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Hepatitis C Main Forums => On Hepatitis C Treatment => Topic started by: art1951 on October 25, 2014, 01:43:09 pm

Title: Harvoni Side effects
Post by: art1951 on October 25, 2014, 01:43:09 pm
I am new to the forum and started taking Harvoni on October 17th.  Is anyone else taking it and experiencing any side effects?  I am getting daily headaches and fatigue when I first take the pill in the evening.  The fatigue seems to be letting up during the day.  I was experiencing nausea for the first few days but that seems to be better now.

I have 1b and my liver is f3 with a viral load of 4.7 million.  AST 75, ALT 93

Thanks, Art
Title: Re: Harvoni Side effects
Post by: Bucky on October 25, 2014, 03:13:23 pm
I am new to the forum and started taking Harvoni on October 17th.  Is anyone else taking it and experiencing any side effects?  I am getting daily headaches and fatigue when I first take the pill in the evening.  The fatigue seems to be letting up during the day.  I was experiencing nausea for the first few days but that seems to be better now.

I have 1b and my liver is f3 with a viral load of 4.7 million.  AST 75, ALT 93

Thanks, Art

Hello Art,
Welcome to the forum, hate you need us but glad you found us.
I can't help you with your question as I used different medications. You could actually be one of the first members to get approved for it. Insurance companies are not wanting to pay for it.
Bucky
Title: Re: Harvoni Side effects
Post by: Bucky on October 25, 2014, 03:25:04 pm
From Harvoni site:  The most common adverse
reactions (≥10%) were fatigue and headache in subjects treated with 8 , 12 or 24 weeks of HARVONI.
Bucky








 
Title: Re: Harvoni Side effects
Post by: art1951 on October 26, 2014, 11:13:43 am
Thanks for the reply.  I have seen the general list of side effects.  What I am wondering about are the side effects worse in the beginning or do they progressively get worse as the medication builds up in your system.  I have seen some posts where they say that the brain fog and fatigue gets better anywhere from the 2nd week to the 6th week.  I am not sure if that was from sovaldi alone which you would think would have similar symptoms since it is the major component in Harvoni.
Thanks,
Art
Title: Re: Harvoni Side effects
Post by: Bucky on October 26, 2014, 11:23:44 am
Thanks for the reply.  I have seen the general list of side effects.  What I am wondering about are the side effects worse in the beginning or do they progressively get worse as the medication builds up in your system.  I have seen some posts where they say that the brain fog and fatigue gets better anywhere from the 2nd week to the 6th week.  I am not sure if that was from sovaldi alone which you would think would have similar symptoms since it is the major component in Harvoni.
Thanks,
Art
Hi Art,
Since I used S&O I can tell you that my fog and vision got better around six weeks (I would say from Sovaldi) but the sun sensitively got worse (listed SE for Olysio). I did not get fatigued on treatment but I did get sleepy. As you probable know there is a difference. Do drink plenty of water to stay flushed out.
Bucky
Title: Re: Harvoni Side effects
Post by: 2Blave on October 26, 2014, 02:57:08 pm
Hi, Art.
Welcome. I don't know about the Harvoni, but I'm pretty sure that Sovaldi can't be taken alone. I think I'm understanding that all these new therapies are combo drugs.
Good luck
Title: Re: Harvoni Side effects
Post by: BattleTheBeast on October 27, 2014, 05:32:23 pm
Hi Art,

Welcome.  i am 1 week ahead of you on S&0, I am newly diagnosed but apparently had it for many many years. Type 1a, viral load over 8 million, F4 and started getting symptoms which is how I found out what was wrong with me in the first place. 4 months of torment, biopsies, specialists and finally they figure out it is Hep C, surprise! So regarding symptoms, I am struggling to figure out what is S&O related and what was already happening due to being sick before I even started. So now I am 17 days in and it's been rough but I imagine it would have been without the treatment as well. I have good days and ok days and really really crappy days where I can't function at all. Constant now that wasn't before for me is lower body aching, mostly legs, slight nausea and headache but water helps and if I get too tired my kidneys kick into the pain mix. I am drinking a ton of water, trying to flush 64 ounces a day. I have a horrible itch from Olysio; you don't need to worry about that.

All I can say is that you need to listen to your body, rest when you need it, drink a ton of water and if something doesn't feel right call your doctor and ask. You can also call My support path (Gilead) and talk to someone there but don't be shy about it, we are all on fairly new wonder drugs and I really think we need to be vocal to make sure we are doing the best things for ourselves.


Just my two cents ;D ok maybe 10 cents. I have been posting an almost day by day of how I feel here you can find if you want. Maybe it will give you some ideas.

~Mel~

~Just wishing the doctor's office would call and give me my 2 week results, praying for my miracle ~

Title: Re: Harvoni Side effects
Post by: art1951 on October 27, 2014, 06:18:27 pm
Thanks for the responses.  After reading some of the stories of the side effects from the other drugs I am a bit embarrassed to even mention mine.  They seem trivial in comparison and I am still not sure what is due to the existing liver problems and what is coming from the medication.  I can already feel moments when the headaches and fatigue are not as bad. 

I have my first blood work (14 days) this Friday and am hoping for the best.
Thanks,
Art
Title: Re: Harvoni Side effects
Post by: lporterrn on October 27, 2014, 07:28:23 pm
As someone said to me art1951 - it isn't a contest. Even mild side effects deserve attention!
Title: Re: Harvoni Side effects
Post by: art1951 on October 27, 2014, 08:27:29 pm
Didn't you take Harvoni in a clinical trial?  Did you experience headaches and did they let up as the trial progressed?
Title: Re: Harvoni Side effects
Post by: lporterrn on October 28, 2014, 04:58:35 pm
Yes, I took Harvoni, and yes, I had headaches, and yes, they let up, but not completely. Many days I took one 500 mg tylenol, which is the best choice for headaches, and is a very safe amount. Just don't exceed 3000 mg per day - 2000 mg if you have cirrhosis.
Title: Re: Harvoni Side effects
Post by: FRED220 on October 28, 2014, 05:47:41 pm
Hello Lucinda, besides headaches what other sides did you have?
Title: Re: Harvoni Side effects
Post by: bb23 on October 28, 2014, 06:50:38 pm
I'm new to this forum. I am 51 and treatment naive. Chronic hep c for for almost 3 decades. Discovered I was infected with the virus sometime in 97 but suspect I contracted it sometime in the 80s. I was a high risk candidate on a few levels and had a transfusion in the hospital in 87 before they screened for hep c let alone identified the virus. It was called "Non A Non B" at the time I believe. Tattoos and drug use were also risk factors. I have been monitoring since I discovered on and off and interferon was not very appealing due to the harsh and long term side effects in the early stages of that drug development. My liver was relatively undamaged and all the docs said I can afford to wait for better treatments. 2 biopsies performed and the most recent one in 2011 showed 0 Fibrosis. But I started feeling really awful and a year and a half later a Fibrospect/Fibrosure blood test showed F4 cirrhosis. This was strange to the doctors and I had several tests done and all of them consistently showed the same F4 result. However knowing the better drugs were around the corner I held out. I have insurance through my job and right before Harvoni was approved I saw a hepatologist and he prescribed it. I was approved based on my advanced liver damage status and a pre-authorized letter from my liver specialist. I started right away on Oct 18 almost a week after it was on the market. I am a lucky one. Side effects seem subtle so far and I can imagine is nothing compared to the older treatments. My job is very unstable so I am hoping I can keep this going for the 12 weeks I have been prescribed and finish. And hopefully be cured. Frankly I am terrified of the further damage of this virus and complications. So far some fatigue and a little insomnia. Some digestive issues and irritability, but I am used to these symptoms from the disease. My doctor also does not trust the blood tests and feels I may not even be cirrhotic. Keeping fingers crossed and hoping for a cure. Treatment naive with or without cirrhosis are required 12 weeks. And my viral load was slightly above 6 million just before I started. Good luck to every one else fighting this horrible disease and I feel confident these new generation of antivirals will save many lives. Hopefully prices will come down as more competitors will come out with similar treatment medications.
Bobby
Title: Re: Harvoni Side effects
Post by: lporterrn on October 28, 2014, 07:26:18 pm
Welcome Bobby and thanks for giving real feedback and hope to others who are in a similar situation.
Title: Re: Harvoni Side effects
Post by: art1951 on October 29, 2014, 09:40:21 am
Bobby,
Thanks for adding your perspective and feedback.  It looks like we are a day apart with the Harvoni but thankfully I am still at f3 with the liver.  I have been having headaches but can associate the severity with work related stress and am trying to manage that.  I am also getting fatigued by end of work day and having trouble repeatedly waking up at night.  So far the overall impact to my daily life is negligible and I am excited to get through with this.  They did push my first blood test back to week 4.
Thanks,
Art 
Title: Re: Harvoni Side effects
Post by: bb23 on October 29, 2014, 01:21:21 pm
Bobby,
Thanks for adding your perspective and feedback.  It looks like we are a day apart with the Harvoni but thankfully I am still at f3 with the liver.  I have been having headaches but can associate the severity with work related stress and am trying to manage that.  I am also getting fatigued by end of work day and having trouble repeatedly waking up at night.  So far the overall impact to my daily life is negligible and I am excited to get through with this.  They did push my first blood test back to week 4.
Thanks,
Art 
Art I'm sorry you are getting headaches. Mine are mild and very short lasting. How was your stage F3 determined? Was it a biopsy? I'm due for my first follow up this coming Monday. And when do you take the Harvoni? Morning or night? You can message me if you want to keep it private.
Title: Re: Harvoni Side effects
Post by: art1951 on October 29, 2014, 01:32:11 pm
No need for privacy.  These are the types of information that I was looking for when I joined the board and so I want to make sure that others have access as well.  It looks like we are the first since Harvoni was approved.

I seem to get sleepy after taking the medication so I have been taking it at night.  It could simply be that I am already tired and it hits me when I sit down in the evening.  I was a little nauseous the first two days and did not want to have to deal with it at work.

I had a biopsy done to determine the liver stage.

Today the headaches are under control by taking 1000 mg of Tylenol.  I do have other issues that may be contributing to it (blood pressure 145/75).  I am definitely more tired and am having trouble getting motivated to exercise.
Title: Re: Harvoni Side effects
Post by: bb23 on October 29, 2014, 02:06:34 pm
No need for privacy.  These are the types of information that I was looking for when I joined the board and so I want to make sure that others have access as well.  It looks like we are the first since Harvoni was approved.

I seem to get sleepy after taking the medication so I have been taking it at night.  It could simply be that I am already tired and it hits me when I sit down in the evening.  I was a little nauseous the first two days and did not want to have to deal with it at work.

I had a biopsy done to determine the liver stage.

Today the headaches are under control by taking 1000 mg of Tylenol.  I do have other issues that may be contributing to it (blood pressure 145/75).  I am definitely more tired and am having trouble getting motivated to exercise.
I was already tired and sleepy from my liver damage so I don't notice it more. In fact I seem to have a bit more energy at times. I guess you should try to drink more water to stay hydrated and flush out. Remember now you have dead viruses floating around. I suppose we may be amongst the first wave of people on Harvoni. My biopsy over 3 years ago showed no fibrosis. Strange that blood tests leaned towards F4 not long after the biopsy. Biopsies are crude and could be erroneous at times by taking tissue sample from a healthy part of your liver or on the flip side an unhealthy part. It does not present a uniform study of the whole liver. I have been told this by some experts. The FDA approved the Fibroscan and hopefully it will replace biopsies soon as a more accurate reading and non invasive. Also I generally stay away from Tylenol. It makes me (my liver) feel awful. Hope the headaches subside. Some side effects do subside as you adjust. And some may pop up as you stay on the meds longer. Every one reacts different. I am generally very sensitive to most medication hence why I'm surprised I don't have headaches as I notice you have and Lucinda had. Hopefully I won't develop these headaches. They reported in trials that the headaches were mild and not lasting which is what my status is with headaches at this point. Also do you take natural supplements for your liver?
Title: Re: Harvoni Side effects
Post by: art1951 on October 29, 2014, 04:14:22 pm
My doctor asked me to stay away from supplements for now.  I was taking some homeopathic supplements but have stopped.
Title: Re: Harvoni Side effects
Post by: bb23 on October 29, 2014, 04:31:26 pm
Mel congratulations on your new results. We have a similar stage status and genotype. Your new results from 10/23/14 - 13 Days into treatment  VL 20, AST-27, ALT 27 Bili - 1.1 That is great.
Title: Re: Harvoni Side effects
Post by: Butterfly2014 on October 30, 2014, 12:54:47 am
I am new to the forum and started taking Harvoni on October 17th.  Is anyone else taking it and experiencing any side effects?  I am getting daily headaches and fatigue when I first take the pill in the evening.  The fatigue seems to be letting up during the day.  I was experiencing nausea for the first few days but that seems to be better now.

I have 1b and my liver is f3 with a viral load of 4.7 million.  AST 75, ALT 93

Thanks, Art


:)


Hi Art, I am on my 2 nd day of harvoni and I have felt a mild headache and some weird like momentarily stabbing pain around my liver area thankfully every thing I have felt have been tolerable and I hope that while on the treatment it remains that way :-) Hope your treatment goes Well and you get cured. Happy and positive wishes send your way
Title: Re: Harvoni Side effects
Post by: art1951 on October 30, 2014, 08:33:48 am
Butterfly,
What stage is your liver?  I started my Harvoni on a Friday and did feel flu like symptoms on the 2nd and 3rd day but then only headache and some fatigue after that.  The headache is easily manageable with Tylenol.

Thanks and hope your treatment works.  I have never felt any pain in the area of my liver.
Title: Re: Harvoni Side effects
Post by: Butterfly2014 on October 30, 2014, 03:22:43 pm
Butterfly,
What stage is your liver?  I started my Harvoni on a Friday and did feel flu like symptoms on the 2nd and 3rd day but then only headache and some fatigue after that.  The headache is easily manageable with Tylenol.

Thanks and hope your treatment works.  I have never felt any pain in the area of my liver.


To be honest my Dr never spoke to me about what stage my liver was i do know i had a biopsy and mri and both show that i had no cirrosis and only show it was inflamated. But now i am curious so next time i see the Dr i Will ask about that :-)
Title: Re: Harvoni Side effects
Post by: art1951 on October 30, 2014, 04:28:22 pm
Make sure that you ask them for your blood test results and monitor your own viral load and AST, ALT and Bilirubin counts like Mel does above.  They will let you know how your treatment is progressing.  Don't just leave it in the hands of the doctors.

The ones that I have seen get the prescription so far have all been stage f3/f4 on their liver.  You need to be aware of that as well and get educated on what that means.  There are a lot of good resources on this forum.
Thanks,
Art
Title: Re: Harvoni Side effects
Post by: goodbyehepc on October 31, 2014, 06:42:55 pm
Hi
New here. Just got my first batch of Harvoni today and I am about to pop my first pill. I will report any side effects in a few days. I am very worried because I'm extremely sensitive to most meds.

Background
-Hep C chronic for slightly over 30 years (was first diagnosed last year)
-No liver damage according to cat scan
-I don't drink, smoke or do drugs, am extremely healthy
-I'm proof that it's a myth that only those with Cirrhosis will get Harvoni (if your with MetroPlus)
-Insurance first denied Solvadi and Olysio but approved Harvoni 72 hours later. The responses came pretty fast.
-My liver tests have shown improvement the past 6 months (strangely)

I attended a presentation on Hep C by the liver foundation and they said you need to contest if your insurgence  denies you, eventually they will have to pay and they also said that Hep C is at epidemic level so treatment will reach all people - just a matter of time.

Will report any symptoms thanks and good luck to all!



Title: Re: Harvoni Side effects
Post by: Bucky on October 31, 2014, 07:06:51 pm
Hi
New here. Just got my first batch of Harvoni today and I am about to pop my first pill. I will report any side effects in a few days. I am very worried because I'm extremely sensitive to most meds.

Background
-Hep C chronic for slightly over 30 years (was first diagnosed last year)
-No liver damage according to cat scan
-I don't drink, smoke or do drugs, am extremely healthy
-I'm proof that it's a myth that only those with Cirrhosis will get Harvoni (if your with MetroPlus)
-Insurance first denied Solvadi and Olysio but approved Harvoni 72 hours later. The responses came pretty fast.
-My liver tests have shown improvement the past 6 months (strangely)

I attended a presentation on Hep C by the liver foundation and they said you need to contest if your insurgence  denies you, eventually they will have to pay and they also said that Hep C is at epidemic level so treatment will reach all people - just a matter of time.

Will report any symptoms thanks and good luck to all!
Welcome and congratulations on getting Harvoni.
Keep us posted,
Bucky
Title: Re: Harvoni Side effects
Post by: art1951 on November 01, 2014, 11:34:49 am
Hi
New here. Just got my first batch of Harvoni today and I am about to pop my first pill. I will report any side effects in a few days. I am very worried because I'm extremely sensitive to most meds.

Background
-Hep C chronic for slightly over 30 years (was first diagnosed last year)
-No liver damage according to cat scan
-I don't drink, smoke or do drugs, am extremely healthy
-I'm proof that it's a myth that only those with Cirrhosis will get Harvoni (if your with MetroPlus)
-Insurance first denied Solvadi and Olysio but approved Harvoni 72 hours later. The responses came pretty fast.
-My liver tests have shown improvement the past 6 months (strangely)

I attended a presentation on Hep C by the liver foundation and they said you need to contest if your insurgence  denies you, eventually they will have to pay and they also said that Hep C is at epidemic level so treatment will reach all people - just a matter of time.

Will report any symptoms thanks and good luck to all!

Thanks for joining.  I am two weeks in and the side effects seem to be negligible at this point.  I do have headaches and just take Tylenol and they are manageable.  The first week was a bit worse but it may have been the Harvoni going after the virus.  I also am a non-smoker and don't drink or do drugs.  The doctor told me that that was why it took so long for the hep-c symptoms to appear.  I had blood transfusions as part of a series of operations on my leg in the 60s.  My sonograms all came back ok but the liver enzymes were up and that's what triggered my being referred to a hepatologist.

I have my first blood work on the 14th. 

Let us know how its going.
Thanks,
Art


Title: Re: Harvoni Side effects
Post by: goodbyehepc on November 01, 2014, 11:55:38 am
Thanks for joining.  I am two weeks in and the side effects seem to be negligible at this point.  I do have headaches and just take Tylenol and they are manageable.  The first week was a bit worse but it may have been the Harvoni going after the virus.  I also am a non-smoker and don't drink or do drugs.  The doctor told me that that was why it took so long for the hep-c symptoms to appear.  I had blood transfusions as part of a series of operations on my leg in the 60s.  My sonograms all came back ok but the liver enzymes were up and that's what triggered my being referred to a hepatologist.

I have my first blood work on the 14th. 

Let us know how its going.
Thanks,
Art

Thanks Art! This gives me something to look forward to. It's the day after my first dose and I feel very hung over from the Harvoni but I definitely feel it working. What helped my hepc was to eat a very good healthy diet of anti-inflammatory foods and exercising, and keep away from spicy foods and any food the liver has to work hard to process. My GGT and AST actually normalized because of this and my viral load went down but my tumor markers were still high and of course I still have the virus which I hope will be zapped very soon!
Title: Re: Harvoni Side effects
Post by: art1951 on November 01, 2014, 12:20:30 pm
I also felt hung over the first day and like I had the flu on the second day with achy joints etc. After the fourth day it was just a headache and a bit of fatigue.  At least we missed the whole Olysio routine.  It sounds like some had major reactions to it.
- Art
Title: Re: Harvoni Side effects
Post by: goodbyehepc on November 01, 2014, 12:36:02 pm
I also felt hung over the first day and like I had the flu on the second day with achy joints etc. After the fourth day it was just a headache and a bit of fatigue.  At least we missed the whole Olysio routine.  It sounds like some had major reactions to it.
- Art

Oh really? I am confused as to what Harvoni is, is it  a combo of Sovaldi/Olysio or is it an entirely different drug? Any info to article would be appreciated.
Title: Re: Harvoni Side effects
Post by: goodbyehepc on November 01, 2014, 12:37:29 pm
I also felt hung over the first day and like I had the flu on the second day with achy joints etc. After the fourth day it was just a headache and a bit of fatigue.  At least we missed the whole Olysio routine.  It sounds like some had major reactions to it.
- Art

BTW do you feel like your appetite is somewhat curbed from Harvoni?
Title: Re: Harvoni Side effects
Post by: art1951 on November 01, 2014, 12:52:27 pm
 Harvoni is a combination of Ledipasvir and Sofosbuvir created by Gilead.  Sofosbuvir cannot work alone and was most recently combined with Olysio which had some nasty side effects like sensitivity to sunlight.  There are also reports of several deaths in Japan that may be related to Olysio.  Read Mel's daily report on s/o in this forum and you will see what he is going through.
"Hepatitis Forums » Hepatitis C Main Forums » On Hepatitis C Treatment » New S/0 Diary of Treatment"


I am not having any issues with appetite.
Title: Re: Harvoni Side effects
Post by: goodbyehepc on November 01, 2014, 01:08:27 pm
Harvoni is a combination of Ledipasvir and Sofosbuvir created by Gilead.  Sofosbuvir cannot work alone and was most recently combined with Olysio which had some nasty side effects like sensitivity to sunlight.  There are also reports of several deaths in Japan that may be related to Olysio.  Read Mel's daily report on s/o in this forum and you will see what he is going through.
"Hepatitis Forums » Hepatitis C Main Forums » On Hepatitis C Treatment » New S/0 Diary of Treatment"


I am not having any issues with appetite.

Thanks. I know it's Ledipasvir and Sofosbuvir but wasn't sure if those two are just a variation of S+O. TBO I have read forums of people taking S+O and had to stop because too many people had different side effects that ranged from mild to severe i.e.. It seemed to me that those who had more severe reactions appeared to have  liver disease going beyond stage 1 but sometimes  the details of their exact condition  was not revealed so I had to stop reading as it was making me depressed.
Title: Re: Harvoni Side effects
Post by: art1951 on November 01, 2014, 05:00:58 pm
Olysio is manufactured by Janssen and Harvoni is Gilead's response so that they can keep all of the revenue.  I believe that it Harvoni is also more effective and I believe the cure rates are:
S+0 94%
Harvoni Genotype 1a 96%
Harvoni Genotype 1b 98%

Which GenoType are you?

I am having my best day yet with very little headache.  I did get a good nights sleep last night which probably helped.  I am also drinking a lot of water as recommended on this forum.

Title: Re: Harvoni Side effects
Post by: sunrise on November 01, 2014, 08:31:26 pm
Hi Art
     Congrads on the Harvoni! I couldve have waited but decided to go w s/o treatment. In 34 days. Appetite way up. Side effecfs minimal.  I do get prickly feeling on skin now and then. Not bad with sun just try to avoid it. Waiting on vl test results from Monday.  Ateast my bilirubin is .1 and ast and alt going down. Started at 40 and 25. Now 25 and 18 at 2 weeks. Good luck and hope your headaches go away. I do have one side effect that bugs me. Anxiety. Altbough I had it prior to tx. It seemz more pronounced now.

Title: Re: Harvoni Side effects
Post by: art1951 on November 02, 2014, 10:09:26 am
Hi Art
     Congrads on the Harvoni! I couldve have waited but decided to go w s/o treatment. In 34 days. Appetite way up. Side effecfs minimal.  I do get prickly feeling on skin now and then. Not bad with sun just try to avoid it. Waiting on vl test results from Monday.  Ateast my bilirubin is .1 and ast and alt going down. Started at 40 and 25. Now 25 and 18 at 2 weeks. Good luck and hope your headaches go away. I do have one side effect that bugs me. Anxiety. Altbough I had it prior to tx. It seemz more pronounced now.
Sunrise - it sounds like the s/o is working well for you.  Do you mind giving the fibrosis stage of your liver.  Do you think that the side effects are less for those who are not yet at f4?  Good luck, it looks like you will soon be free of this.  I have to wait another two weeks to get my blood checked.  My blood pressure seems to have gone up a bit and I am monitoring it and trying to get it back under control.  I find that exercise works for me for anxiety and blood pressure management.
 
Title: Re: Harvoni Side effects
Post by: sunrise on November 02, 2014, 10:25:58 am
Hi Art
     I was diagnosed in June. Doc said I was at F0-F, inflammation was progressing. It probably does make some difference, but good thing the liver does regenerate to some level. Thanks for the feedback. I need to exercise more. Ive been having other things. Worrying about results from mri. Waiting is the worst. Wish you the best on your treatment. Truly a blessing.
Title: Re: Harvoni Side effects
Post by: goodbyehepc on November 02, 2014, 12:29:45 pm
Hello all,
I am on the third day on Harvoni (I've taken it twice each night and will take the third dose this evening). I am happy to report that while I experienced some side effects on the first two days (flu like symptoms like slight stiff joints, brain fog, fatigue, slight headache for a short period of time, dry mouth) I am not really feeling any side effects this third day. I take it around 8PM after having my dinner and I take it with a glass of milk. This is my first ever treatment for HepC which I've had for over 30 years. I am not in advanced liver disease stages as far as they can tell, my cat scan came negative and and ultra sound came out negative.

Today I am going to try to exercise or go for a power walk .

Thanks
GHC
Title: Re: Harvoni Side effects
Post by: art1951 on November 02, 2014, 04:37:56 pm
GHC- nice to hear that you are doing ok.  Maybe you were correct and those with little liver damage have fewer side effects.  I felt better today but might have over done it and am feeling the fatigue.

Art
Title: Re: Harvoni Side effects
Post by: goodbyehepc on November 02, 2014, 06:26:41 pm
GHC- nice to hear that you are doing ok.  Maybe you were correct and those with little liver damage have fewer side effects.  I felt better today but might have over done it and am feeling the fatigue.

Art
Hi Art,
I think it really has to do with your health condition and also whether you've done hep treatment before and how resistant you are to the meds but then again what do I know.

You may have to pace yourself. I went for a power walk today that's how side effect free I felt but I didn't have the same stamina- only got five hours of sleep last night. 

Do you feel any different though since now it's been almost a week?
GHC
Title: Re: Harvoni Side effects
Post by: Mike on November 02, 2014, 07:44:22 pm
Hi Art,

We're all pulling for you. I believe you're the first forum member to treat with Harvoni.

Remember that these are potent drugs and there will be some side effects. I treated with Sovaldi and had a headache for the first few weeks. It seemed to dissipate around week 4.

Best wishes, Mike
Title: Re: Harvoni Side effects
Post by: goodbyehepc on November 02, 2014, 10:43:34 pm
Hello,
I have taken my third dose of Harvoni and am happy to say that the side effects have diminished greatly upon taking the pill- this time there was just a slight fog and a bit of fatigue. I must report that I never really got a headache (just a tad). Again I have taken it after my meal with a glass of milk. This is really an amazing drug as it seriously has minimal side effects- thus far. Thanks
GHC
Title: Re: Harvoni Side effects
Post by: art1951 on November 03, 2014, 08:38:54 am
I am going into week 3 and it does seem like my liver is getting a break and doing better.  I mention this because I had been having issues with edema (legs swelling) and it seems to be better for the past 3-5 days.
I also believe that this is a wonder drug and only mentioning symptoms so that others have something to refer to.  One of the biggest issues that I had going through this process was not having a clear understanding of what was ahead of me.  I didn't find this forum for the first 3 months.  I had issues with what I felt was a lack of flow of information from the doctors and a very slow pace on their side.  They scheduled my second appointment for 5 weeks after the biopsy and were not planning to give me the results until then.  That doesn't work for me and I need to know what's going on.

The side effects so far today are negligible and I am hoping to get back on the elliptical tonight and start exercising again.

I still have to wait until the 14th for my next blood test but am starting to feel better so I assume the viral load is going down.

Thanks,
Art
Title: Re: Harvoni Side effects
Post by: goodbyehepc on November 03, 2014, 08:47:05 am
Art
Glad your leg swelling went down and I'm happy to hear you are getting back strength to exercise. TBH I don't think the healthcare problem in this country was just with healthcare insurance, it was also with the management and procedures doctors take and the chaos often around it. To truly reform healthcare there need to be an assessment of what and how doctors are doing.

I'm going to attempt an aerobics today. :-)
Title: Re: Harvoni Side effects
Post by: bb23 on November 03, 2014, 08:11:24 pm
I just left my Hepatologist. And I seem to be the first patient he has on Harvoni. I'm on day 17 and fatigue is pretty much all I am still dealing with. Most other symptoms subsided and luckily I have not experienced many head aches. Blood tests are scheduled for next week. And He predicts I will be down to 0 viral load already. Many patients on Sovaldi seem to get their viral load down to almost nothing in the first 2 weeks. I just noticed a patient posted about getting approved with F0 status. They usually have been approving F3/F4 status. I'm F4 hence why I got approved so quick, even the doctor was surprised how quick. I think the insurance companies approve this combo 1 pill quicker than O/S combination cause it's cheaper. Good luck to every one.
Bobby
Title: Re: Harvoni Side effects
Post by: art1951 on November 03, 2014, 09:19:25 pm
Bobby,
Glad to hear you are doing well. I am also getting over the headaches but did have a bit of fatigue today.  If you are F4 and no side effects then they must vary by individual not simply by the state of the liver.  I can tell that I am doing better each day.  Looking forward to my first blood test.  My doctor does not seem to concerned.  My next appointment with him was scheduled for January after I had run the course.  He upped it to mid December after I reported headaches.

At f4 are you experiencing any problems with your liver?  I just started noticing the edema within the last 2 months but it is letting up already.

Keep us informed of how you are doing.

Thanks,
Art 
Title: Re: Harvoni Side effects
Post by: goodbyehepc on November 04, 2014, 12:12:02 am
I just left my Hepatologist. And I seem to be the first patient he has on Harvoni. I'm on day 17 and fatigue is pretty much all I am still dealing with. Most other symptoms subsided and luckily I have not experienced many head aches. Blood tests are scheduled for next week. And He predicts I will be down to 0 viral load already. Many patients on Sovaldi seem to get their viral load down to almost nothing in the first 2 weeks. I just noticed a patient posted about getting approved with F0 status. They usually have been approving F3/F4 status. I'm F4 hence why I got approved so quick, even the doctor was surprised how quick. I think the insurance companies approve this combo 1 pill quicker than O/S combination cause it's cheaper. Good luck to every one.
Bobby

Hey Bobby,
 I've never had a biopsy only a cat scan that came out negative, would that mean I'm an F0? I got the Harvoni 4 days ago - and yes they approved it after they said nay to the s/o> I'm on my fourth day of Harvoni. I take it late in the day after dinner thinking it would make me tired (which it did at first)  but not so any more -my fatigue seems to come and go, and this morning when I woke up I had what I guess you would call a  Harvoni hangover. I woke up with very slight flue like symptoms and felt fatigued until the afternoon. Then I got a burst of energy and did a power walk after a cat nap.  I took my dose after dinner and got somewhat fatigued again then I was able to do a workout. No headache for me though after I take a dose I seem to get stuffy head, even heard ringing (tinnitus)  a few times in the first few days. Has your appetite gone up?
GHC
Title: Re: Harvoni Side effects
Post by: bb23 on November 04, 2014, 01:43:47 am
Bobby,
Glad to hear you are doing well. I am also getting over the headaches but did have a bit of fatigue today.  If you are F4 and no side effects then they must vary by individual not simply by the state of the liver.  I can tell that I am doing better each day.  Looking forward to my first blood test.  My doctor does not seem to concerned.  My next appointment with him was scheduled for January after I had run the course.  He upped it to mid December after I reported headaches.

At f4 are you experiencing any problems with your liver?  I just started noticing the edema within the last 2 months but it is letting up already.

Keep us informed of how you are doing.

Thanks,
Art
Hi Art,
I'm really not feeling any discomfort with the liver. I do hear some noises though related to digestion issues probably. Glad the headaches went away. I do not have edema or ascites! There are different stages of cirrhosis as you know. I am probably what's considered early stage compensated cirrhosis. My biopsy from 2011 was F0. So there is still a doubt about the fibrospect/fibrosure tests. I may do a Fibroscan at the end of my treatment! No more biopsies! Weird that you got edema at F3. Glad it went down. Usually edema is present in more advanced stages of liver damage.
Title: Re: Harvoni Side effects
Post by: bb23 on November 04, 2014, 02:16:59 am
Hey Bobby,
 I've never had a biopsy only a cat scan that came out negative, would that mean I'm an F0? I got the Harvoni 4 days ago - and yes they approved it after they said nay to the s/o> I'm on my fourth day of Harvoni. I take it late in the day after dinner thinking it would make me tired (which it did at first)  but not so any more -my fatigue seems to come and go, and this morning when I woke up I had what I guess you would call a  Harvoni hangover. I woke up with very slight flue like symptoms and felt fatigued until the afternoon. Then I got a burst of energy and did a power walk after a cat nap.  I took my dose after dinner and got somewhat fatigued again then I was able to do a workout. No headache for me though after I take a dose I seem to get stuffy head, even heard ringing (tinnitus)  a few times in the first few days. Has your appetite gone up?
GHC
Hi GHC,
A CT scan doesn't determine F stage. It does however show any abnormality in terms of size and blood flow and obstruction and lesions and such. My status was determined by bio markers from blood tests such as fibrospect and fibrosure. My CT Scans looked normal too and so did ultrasound. The gold standard of gauging stage of fibrosis and scarring has been biopsies but even they can be inaccurate. Mine is a good example which has perplexed doctors. Biopsy from 4 years ago showed F0 but suddenly less than 2 years after blood tests (noninvasive) showed a big jump to F4. I take my Harvoni in the morning cause it's easier to monitor that way and to be consistent with the time. Usually when I wake up. The side effects were more noticeable in the first 3-4 days. But mostly went away day 5. Head aches were very mild in the beginning and short lived. Now they are not even noticeable. Gotta drink lots of water. You will do just fine from the sound of it. And my appetite is not so good at the moment. But I felt really hungry in the first 48 hours. If at any point a biopsy is suggested, look in to a Fibroscan. Good luck to you.
Title: Re: Harvoni Side effects
Post by: goodbyehepc on November 04, 2014, 09:10:39 am
Hi GHC,
A CT scan doesn't determine F stage. It does however show any abnormality in terms of size and blood flow and obstruction and lesions and such. My status was determined by bio markers from blood tests such as fibrospect and fibrosure. My CT Scans looked normal too and so did ultrasound. The gold standard of gauging stage of fibrosis and scarring has been biopsies but even they can be inaccurate. Mine is a good example which has perplexed doctors. Biopsy from 4 years ago showed F0 but suddenly less than 2 years after blood tests (noninvasive) showed a big jump to F4. I take my Harvoni in the morning cause it's easier to monitor that way and to be consistent with the time. Usually when I wake up. The side effects were more noticeable in the first 3-4 days. But mostly went away day 5. Head aches were very mild in the beginning and short lived. Now they are not even noticeable. Gotta drink lots of water. You will do just fine from the sound of it. And my appetite is not so good at the moment. But I felt really hungry in the first 48 hours. If at any point a biopsy is suggested, look in to a Fibroscan. Good luck to you.

Hm interesting. By bio markers you mean tumor markers? I do show tumor markers as being high but they say that's common with chronic c people. Wherever my liver is at I can't do anything about it right now except what I'm doing now which is taking the Harvoni to treat the hep c but I will talk to the doctor next time I see him and demand more information. I've seen several doctors and they refer to my condition as early stage of liver disease. I have to ask him though about these blood test blood tests  fibrospect and fibrosure.
Title: Re: Harvoni Side effects
Post by: art1951 on November 04, 2014, 09:39:33 am
Hi Art,
I'm really not feeling any discomfort with the liver. I do hear some noises though related to digestion issues probably. Glad the headaches went away. I do not have edema or ascites! There are different stages of cirrhosis as you know. I am probably what's considered early stage compensated cirrhosis. My biopsy from 2011 was F0. So there is still a doubt about the fibrospect/fibrosure tests. I may do a Fibroscan at the end of my treatment! No more biopsies! Weird that you got edema at F3. Glad it went down. Usually edema is present in more advanced stages of liver damage.

I did think it was unusual that my doctor told me that my liver was in pretty bad shape but the biopsy showed f3.  He was not able to get any consistent results with the fibroscan. He did mention that there were no symptoms of ascites.

I am going to go back and review and see if there were any fibrospect or fibrosure tests done.

Thanks,
Art

Title: Re: Harvoni Side effects
Post by: bb23 on November 04, 2014, 01:43:53 pm
I did think it was unusual that my doctor told me that my liver was in pretty bad shape but the biopsy showed f3.  He was not able to get any consistent results with the fibroscan. He did mention that there were no symptoms of ascites.

I am going to go back and review and see if there were any fibrospect or fibrosure tests done.

Thanks,
Art

Title: Re: Harvoni Side effects
Post by: bb23 on November 04, 2014, 01:50:14 pm
Art F3 is definitely not good but not as bad of shape as F4 obviously. You had a Fibroscan (transient elastography)? Those devices/machines are not available in too many places.
Title: Re: Harvoni Side effects
Post by: art1951 on November 04, 2014, 03:28:52 pm
Art F3 is definitely not good but not as bad of shape as F4 obviously. You had a Fibroscan (transient elastography)? Those devices/machines are not available in too many places.
They have one at Dallas Methodist.  They mentioned that they have used it about 80 times in the previous 2 months since they purchased it and only twice would it not get a good reading.  The cost was $700 per test.
Title: Re: Harvoni Side effects
Post by: bb23 on November 05, 2014, 06:13:24 pm
They have one at Dallas Methodist.  They mentioned that they have used it about 80 times in the previous 2 months since they purchased it and only twice would it not get a good reading.  The cost was $700 per test.
It's only $350 at the facility that I know of here, and insurance does not cover yet.
Title: Re: Harvoni Side effects
Post by: bb23 on November 05, 2014, 06:23:19 pm
Hm interesting. By bio markers you mean tumor markers? I do show tumor markers as being high but they say that's common with chronic c people. Wherever my liver is at I can't do anything about it right now except what I'm doing now which is taking the Harvoni to treat the hep c but I will talk to the doctor next time I see him and demand more information. I've seen several doctors and they refer to my condition as early stage of liver disease. I have to ask him though about these blood test blood tests  fibrospect and fibrosure.
GHC,
Tumor markers are different from bio markers/biochemical tests/blood serum biochemical markers. Labcorp uses Fibrosure and Fibrospect is another name for a similar test. Tumor markers are used to check for cancer.
Title: Re: Harvoni Side effects
Post by: goodbyehepc on November 05, 2014, 08:01:40 pm
GHC,
Tumor markers are different from bio markers/biochemical tests/blood serum biochemical markers. Labcorp uses Fibrosure and Fibrospect is another name for a similar test. Tumor markers are used to check for cancer.

Thank you for the clarification. They said people with hep c usually score on the tumor markers and that it's common but I don't see anyone speaking about this....
Title: Re: Harvoni Side effects
Post by: JoeK9999 on November 06, 2014, 03:53:42 pm
I started Harvoni 13 days ago for genotype 1a, F0-F1. Diagnosed 19 years ago, probably got it in the early 70's.
I have had some side effects that I am not sure if
is from the Harvoni, or not but wanted to share.
After the 4th day I had swelling in my right groin lymph gland. On the 6th day I had a tiny blister like thing on my thumb. After 2 days it became huge and covered 1/3 of my thumb pad with red lines running up my arm and inflaming my lymph system in my arm. The doctor gave my 10 days of Keflex. After 5 days of Keflex,the lymph swelling in groin is almost gone. The red inflamed arm lymph nodes are gone. The blister is getting better but still there. Other than that no other side effects. The good news is that my AST is 25 and ALT is 28 after the 10 day test. It's in normal range and better than it has been in 20 years. After 4 weeks of treatment I am taking my 1st viral load test.  Has anyone had swollen glands or skin problems with Harvoni?
Title: Re: Harvoni Side effects
Post by: goodbyehepc on November 06, 2014, 03:58:14 pm
I started Harvoni 13 days ago for genotype 1a, F0-F1. Diagnosed 19 years ago, probably got it in the early 70's.
I have had some side effects that I am not sure if
is from the Harvoni, or not but wanted to share.
After the 4th day I had swelling in my right groin lymph gland. On the 6th day I had a tiny blister like thing on my thumb. After 2 days it became huge and covered 1/3 of my thumb pad with red lines running up my arm and inflaming my lymph system in my arm. The doctor gave my 10 days of Keflex. After 5 days of Keflex,the lymph swelling in groin is almost gone. The red inflamed arm lymph nodes are gone. The blister is getting better but still there. Other than that no other side effects. The good news is that my AST is 25 and ALT is 28 after the 10 day test. It's in normal range and better than it has been in 20 years. After 4 weeks of treatment I am taking my 1st viral load test.  Has anyone had swollen glands or skin problems with Harvoni?
WOW I never heard of those reactions and I can't say that I've had anything close to that. In fact my side effects have been pretty minimal other than tiredness which comes and goes and a weird pepper like taste in my mouth. Good job on the AST+ALT numbers. Did the doc say those things were from the Harvoni?
Title: Re: Harvoni Side effects
Post by: JoeK9999 on November 06, 2014, 04:15:05 pm
My doctor has no clue because it's such a new drug. These things were not reported in the clinical trials, but who knows. Hopefully when
more and more people take it they will report different side effects here.
I did have a mild headache the first 2 days and some stomach grumbling, but it
was all minor. Before I started I had a lot of fatigue. It's gone now! I think Harvoni is going to rid us of this demon quickly.
Title: Re: Harvoni Side effects
Post by: goodbyehepc on November 06, 2014, 04:33:53 pm
My doctor has no clue because it's such a new drug. These things were not reported in the clinical trials, but who knows. Hopefully when
more and more people take it they will report different side effects here.
I did have a mild headache the first 2 days and some stomach grumbling, but it
was all minor. Before I started I had a lot of fatigue. It's gone now! I think Harvoni is going to rid us of this demon quickly.

Yea I would get a lot fatigue too, now my fatigue is different and side effect related I wonder when it will go away.  We WILL be free of this horrible virus thatstays way way too long!
Title: Re: Harvoni Side effects
Post by: sc1984 on November 06, 2014, 11:56:35 pm
Hi all. I'm new to the site and was just recently diagnosed about 2 months ago; I am 30 years old.  I am supposed to be starting Harvoni, just waiting on my private insurance but have been approved for the remainder of pay through the company that provides the medication. I've been lucky so far. Originally it was supposed to be Pegatron with Sovaldi, but I just got the updated news today, and I am happy I don't have to give myself a needle. I'm super scared to take the meds and have NO idea on what to expect. :/ I'm a Mom, have two kids, a great husband, I work full time, and have activities for my kids everyday and am worried about how my quality of life is going to be affected. :/
Title: Re: Harvoni Side effects
Post by: sc1984 on November 07, 2014, 12:13:41 am
I guess reading more on this, I'm not sure my genotype and all of that off hand, I would have to find my paperwork again however I know that the disease is very low with me, and I have no liver damage at all and no cirrhosis. I should be starting Harvoni within the next 3 weeks tops though, I live in Canada, not sure if that makes a difference with me receiving the treatment as I said, I have no damage, and I don't even have side effects at all from the disease that I am aware of. I mean I'm tired a lot but I work almost 40 hours a week, take two children daily to extra curricular activities and have my husband and run my household...so I attribute the terrible fatigue to that. I feel as though I shouldn't be as scared about the medications and I know I'm newly diagnosed and guess I shouldn't complain seeing as many of you have it so much worse :( I am hoping the medication works, my doctor says I have a 98% chance of clearing it with this medication so I am really hopeful. I don't want to have to live with this my whole life. It scares me to death. I would have only contracted it sometime in the last two years. (I would have added to my comment but am unsure how to do so and/or even reply to anyone--forgive my newbie status).
Title: Re: Harvoni Side effects
Post by: JoeK9999 on November 07, 2014, 06:08:20 am
sc1984 Harvoni is the miracle we have all been waiting for. I have known many people who have had to go through 24 -48 weeks of interferon and ribarin with horrible side effects. You are very lucky to have caught this early and don't have any problems from this yet and that this miracle drug is here now.
Don't worry, get on the Harvoni  even if it takes 6 months or so to before you can get it. Many people don't start getting symptoms for 20-30 years. Some people get symptoms and liver problems quickly. You will be able to function and the side effects are minimal if any. You should only have to take it for 8 weeks. I don't really have any side effects to speak of after 2 weeks on Harvoni so far. As I said above I did have a swollen groin lymph node and a thumb sore that inflamed my arm lymph nodes, but it may or may not be from the Harvoni and Keflex (antibiotic) has resolved it. I haven't heard anyone one else with those type of side effects. Usually just a mild headache and /or some fatigue for the first week or two if any. I believe I have had this for almost 40 years even though I was diagnosed in 1995, but don't know for sure so my body may be so used to the HepC that the meds killing it and flushing it out of my system caused these reactions. Like you I have no liver damage, just inflammation of the liver, but in the last 10 years I have had fatigue , stomach problems and some infections that I believe are from the Hep C which not only attacks your liver, but attacks your immune system as your immune system is constantly trying to fight this disease, but it can't because it keeps disguising it self. 8 weeks and then you are cured and don't have to worry and a great burden will be lifted off of you. You can then enjoy your family and life without this in the back of your mind. 
Title: Re: Harvoni Side effects
Post by: art1951 on November 07, 2014, 08:22:50 am
Hi all. I'm new to the site and was just recently diagnosed about 2 months ago; I am 30 years old.  I am supposed to be starting Harvoni, just waiting on my private insurance but have been approved for the remainder of pay through the company that provides the medication. I've been lucky so far. Originally it was supposed to be Pegatron with Sovaldi, but I just got the updated news today, and I am happy I don't have to give myself a needle. I'm super scared to take the meds and have NO idea on what to expect. :/ I'm a Mom, have two kids, a great husband, I work full time, and have activities for my kids everyday and am worried about how my quality of life is going to be affected. :/

I am on day 21 of Harvoni and so far it has not impacted my daily routine.  Many people are reporting little to no side effects.  Some of us are impacted for the first 3 days as our bodies adjust to the medication and it fights the hep-c.

I have had daily headaches that are manageable with Tylenol.  I have had headaches before I started on Harvoni but they are more severe since I started the medication.  I have also experienced fatigue on some days but it is not an every day occurrence and I find that if I get a good nights sleep I am not bothered by it.

It sounds like you have already gotten past the main hurdle in getting access to the Harvoni.  The stress related to not knowing what comes next and what your course of treatment is can be difficult to manage.  Many have been dealing with this for years and at least you caught it early and have a plan to get rid of it.  If there was ever a time to be diagnosed with hep-c this is it.  The medication and support systems are all there to help you get over it.

Good luck and let us know when you start taking it.

- Art
Title: Re: Harvoni Side effects
Post by: JillLynn on November 07, 2014, 09:46:27 am
I've been on Harvoni since October 17.     I am feeling pretty good on it.    I tried the 48 weeks twice of peg/inter and my Hep C came back both times.  The second time after 9 mos.  I was so disappointed and that treatment is like death!!!!!    This is SO much better!  I'm just praying to be virus free.  My joints ache so bad......I think this is from having Hep. C for 40 years.   Time will tell.........In 2 weeks my Hep C should test clear according to my Dr.  Then I'll be on the harvoni for another 2 mos.    YES I AM NERVOUS this won't work since the other 2 treatments failed me twice but I am hopeful of course.  To be rid of this virus will be amazing.  I wonder how long it takes for ones body to heal once the virus is gone?   
Well......  I better go walk.......I do feel better once I'm outside in nature.   I am starting to feel nauseas from the harvoni for the last 2 days.  But I can handle anything for 12 weeks!!!!  nothing will ever be as bad as ribovirin and pegintron/pegasus....those were killer treatments.    Let me know how you are doing on Harvoni and best to us all!   
Title: Re: Harvoni Side effects
Post by: Cbrunette on November 07, 2014, 02:26:42 pm
Hi Everyone,
I'm new to this site, but I have greatly appreciated reading all of your comments. A little about my Hep C experiences. I became infected at 2 months old when I was a premature twin and received 12 blood transfusions and two complete blood exchanges in 1979. I'm 35 now (for those who don't like math like me). I have been diagnosed since 1995 and I underwent 48 months of Peg Interferon/Ribavirin in 2000. That was the worst year of my life, and the treatment failed.

I'm a Gen. 1a with a relatively low viral load today (1.5 million), but back in 2000 I was around 9.5 million. I'm not cirrhotic, but my fibrosis levels are unclear. Somewhere around F3. I often get asked if I am fatigued, and I answer with I don't know since I've had this my whole life. I think I am, but without anything to compare it to, it's hard to say.

I started Harvoni on November 1st, and so far my side effects have been minimal. I was greatly fatigued Day 1 and 2 (I slept for 13 hours on Day 1). My headaches have definitely been there, but always low-level and intermittent. Today (Day 7) I no longer have headaches, and the fatigue has returned to my normal levels. I also experienced brain fog for the first 5 days, but that also seems to be letting up.

I really thank everyone for commenting about drinking a lot of water because I have noticed that I'm very thirsty on Harvoni. I have increased my water intake to about 6-8 cups a day, when before I might've only had one (I know... not good).

I'm posting today because I've noticed that both of my hands are swollen. Nothing major, but not normal for me. I don't know if it's related or not to Harvoni, but I'll be checking with my doctor.

For all of us taking these new drugs, it brings tears to my eyes thinking of possibly living a life free of Hep C. Also, I can't be happier knowing I will no longer have to experience the horrific side effects I went through with Interferon. I had to quit college for a year, move home, stop driving and was on serious anti-depressants. I experienced rage, short-term memory loss, extremely achy hands, etc.

So far, Harvoni is a miracle, and like many of you, I needed this very much.

Thank you all, and I look forward to reading more of your comments. We can beat this virus together. =o)
Title: Re: Harvoni Side effects
Post by: goodbyehepc on November 07, 2014, 02:35:42 pm
Welcome Cbrunette! I think in time the headaches may even stop. I wonder why some people get them and others don't.... I never actually got headaches, at first I only experienced a stuffy head and brain fog similar to ones when you have allergy/hay fever. Each day I get more and more energy but my sleep is messed up (always has) Good luck and keep us posted!
Title: Re: Harvoni Side effects
Post by: JoeK9999 on November 07, 2014, 08:03:46 pm
Hi Everyone,
I'm new to this site, but I have greatly appreciated reading all of your comments. A little about my Hep C experiences. I became infected at 2 months old when I was a premature twin and received 12 blood transfusions and two complete blood exchanges in 1979. I'm 35 now (for those who don't like math like me). I have been diagnosed since 1995 and I underwent 48 months of Peg Interferon/Ribavirin in 2000. That was the worst year of my life, and the treatment failed.

I'm a Gen. 1a with a relatively low viral load today (1.5 million), but back in 2000 I was around 9.5 million. I'm not cirrhotic, but my fibrosis levels are unclear. Somewhere around F3. I often get asked if I am fatigued, and I answer with I don't know since I've had this my whole life. I think I am, but without anything to compare it to, it's hard to say.

I started Harvoni on November 1st, and so far my side effects have been minimal. I was greatly fatigued Day 1 and 2 (I slept for 13 hours on Day 1). My headaches have definitely been there, but always low-level and intermittent. Today (Day 7) I no longer have headaches, and the fatigue has returned to my normal levels. I also experienced brain fog for the first 5 days, but that also seems to be letting up.

I really thank everyone for commenting about drinking a lot of water because I have noticed that I'm very thirsty on Harvoni. I have increased my water intake to about 6-8 cups a day, when before I might've only had one (I know... not good).

I'm posting today because I've noticed that both of my hands are swollen. Nothing major, but not normal for me. I don't know if it's related or not to Harvoni, but I'll be checking with my doctor.

For all of us taking these new drugs, it brings tears to my eyes thinking of possibly living a life free of Hep C. Also, I can't be happier knowing I will no longer have to experience the horrific side effects I went through with Interferon. I had to quit college for a year, move home, stop driving and was on serious anti-depressants. I experienced rage, short-term memory loss, extremely achy hands, etc.

So far, Harvoni is a miracle, and like many of you, I needed this very much.

Thank you all, and I look forward to reading more of your comments. We can beat this virus together. =o)

Cburnette: I read about your swollen hands. I have had some swelling that you can read in my first post above. Mine is much different, but I have a feeling they are Harvoni related. My Doc didn't really say if it was or wasn't related to the Harvoni. I have a feeling that as more and more people take it, we will see more and more side  effects that were not reported or they just passed them off as non-related. I took my 15th pill today am doing well. Let me know what the doc says about your hands.
Title: Re: Harvoni Side effects
Post by: goodbyehepc on November 09, 2014, 12:21:55 pm
Hi All
I'm on Harvoni now 9 days and I have absolutely no side effects whatsoever! About day 7 they dissipated which I'm very grateful for. I do feel the drug is making a huge difference in my body, there are so many things that seems to be disappearing such as joint pain, constant low energy,  and many more I can't even explain. It really is a wonder drug. I hope and pray you will all get it soon and heal as well.
GHC
Title: Re: Harvoni Side effects
Post by: JoeK9999 on November 09, 2014, 01:01:34 pm
goodbyehepc: That's great news. I have been on it 17 days and I am feeling great also.
Fatigue, muscle and joint pain, stomach related issues are all disappearing. It is a wonder drug.
Title: Re: Harvoni Side effects
Post by: goodbyehepc on November 10, 2014, 01:07:51 am
goodbyehepc: That's great news. I have been on it 17 days and I am feeling great also.
Fatigue, muscle and joint pain, stomach related issues are all disappearing. It is a wonder drug.

That's great to hear and something to look foreword to!
Title: Re: Harvoni Side effects
Post by: Cbrunette on November 10, 2014, 03:55:55 pm
Quick update: Regarding my swollen hands, the doctor didn't think there was a connection to Harvoni. I've noticed though I've been very thirsty since starting the meds, so I think there still might've been a connection. Good news is that with a small dose of ibuprofen and increased water intake I'm doing fine now. This is now my Day 10 and honestly I don't notice any side-effects anymore. Fingers are crossed, but this treatment is going beautifully so far. Best of luck everyone! I can't wait to read on here once we're all done with the meds and we get to rejoice with SVR postings.
Title: Re: Harvoni Side effects
Post by: Dandelion on November 10, 2014, 07:19:44 pm
I'm waiting to start H and see Dr. Dec 1st. Meanwhile, I wonder if Bucky or someone could explain to me the diff between feeling fatigued and sleepy. I'm feeling very sleepy lately and it has me concerned.
Thanks in advance,
June
Title: Re: Harvoni Side effects
Post by: Mike on November 10, 2014, 07:26:05 pm
Fatigue is that the whole body feels tired, with no energy (physically/mentally exhausted). You can be fatigued and not sleepy. Sleepy relates to the brain being tired and needs to rest.

Best wishes, Mike
Title: Re: Harvoni Side effects
Post by: Johnny_Wayne on November 11, 2014, 08:33:57 pm
Hi Art, I take Harvoni first thing in the morning with my other meds. So far 6 days in and no side effects. At least no more side effects than those which are normal for me with a failing liver.
Title: Re: Harvoni Side effects
Post by: daleb0411 on November 12, 2014, 10:08:11 am
im 7 days in headache is only prob.take before bed seems to
work best.good luck everyone on this.
Title: Re: Harvoni Side effects
Post by: Bucky on November 12, 2014, 10:49:18 am
I'm waiting to start H and see Dr. Dec 1st. Meanwhile, I wonder if Bucky or someone could explain to me the diff between feeling fatigued and sleepy. I'm feeling very sleepy lately and it has me concerned.
Thanks in advance,
June

June,
Fatigue is "hitting the wall" and your arms and legs feel like they weigh 100lbs each. Sleep doesn't really help it a whole lot.
Sleepy is nodding off while watching TV or reading. Sleep does help and you feel refreshed after a nap or a good nights sleep.
Just my observation, I am not a medical professional yet.
Bucky
Title: Re: Harvoni Side effects
Post by: art1951 on November 12, 2014, 11:20:07 am
Hi Art, I take Harvoni first thing in the morning with my other meds. So far 6 days in and no side effects. At least no more side effects than those which are normal for me with a failing liver.

I am now 26 days in and the fatigue and all other side effects are gone except headaches.  My blood pressure has also gone up significantly but I am think that is more due to stress at work and around the hep-c.  I am going to my primary care physician next week to check and get the blood pressure under control and see if that is what is causing the headaches.  I may just be one of the unlucky ones that get the headaches with Harvoni.

- Art
Title: Re: Harvoni Side effects
Post by: JillLynn on November 12, 2014, 01:11:55 pm
  Art....i started my Harvoni the same day you did, October 17.  I have serious nausea.  No headaches.   You have NO nausea?    Just curious.   I feel bloated and super sick to my stomach.   
Title: Re: Harvoni Side effects
Post by: art1951 on November 12, 2014, 01:34:00 pm
  Art....i started my Harvoni the same day you did, October 17.  I have serious nausea.  No headaches.   You have NO nausea?    Just curious.   I feel bloated and super sick to my stomach.
For the first 3 days I felt nausea and dizzy.  Since then I have had a few days where my stomach was upset if I did not take the Harvoni with a meal.  I have been taking mine at night around 8:00.
Title: Re: Harvoni Side effects
Post by: fllazylady on November 12, 2014, 04:08:40 pm
My name is Paulette AKA Fllazylady..
I am on day three I take my meds at 10 AM in the morning have had no trouble with nausea I take it after my breakfast I drink a lot of water 16 ounces before from the time I wake up till I have my pill and then another 16 ounces after my Pill and I've been feeling great I only had a slight headache on the first day and that's all that I've experienced... I'm 67. I'm retired so I don't have to go to work so maybe it's different for me because I don't have the stress of being out for the day. I read in a post not sure where about the importance of drinking the water maybe that's the difference between keeping the nausea way is keeping the water in my system I'm not sure but I've been forcing 64 ounces every day at least...I would definitely try switching my time up if I'm not feeling well. I would change up the time with or without food however you're doing it..
I will keep posting daily to help all those of you that are having a rough time I'm sorry for that we all need this cure and we all need to help each other to get through it..keep up the post
Title: Re: Harvoni Side effects
Post by: fllazylady on November 12, 2014, 04:11:43 pm
 Are we not allowed to speak about the help of cannabis for side effects of treatment???
I vapor three times a day with cannabis to help my side effects maybe that's why I'm not having any..
For those of you that have it legal in your state you might want to talk to your doctor..I am a Michigan girl...
Title: Re: Harvoni Side effects
Post by: Mike on November 12, 2014, 06:50:33 pm
I haven't seen any issues regarding the discussion of medicinal marijuana. My feelings are that it helps a lot of folks with a lot of different illnesses.

In fact, I've read research that indicates that marijuana use can help with side effects and lead to greater treatment compliance.

The only drawback is that some insurance companies are requiring a clean drug test (including marijuana & alcohol) prior to approving Sovaldi-based treatments.  These requirements don't really correlate with positive treatment outcomes, however.

A Hep-C infection is a qualified medical diagnosis in all states that allow medicinal marijuana use.

Best wishes, Mike
Title: Re: Harvoni Side effects
Post by: fllazylady on November 12, 2014, 09:02:50 pm
I just spent the last three months in Michigan with my best friend that has lung and brain cancer. Spent a lot of time in the hospital they are voted best hospital in Michigan and the doctors there are all on board with it. They highly recommended it for side effects I was really amazed at how they have changed their mind about the use of cannabis for medical need to help with the effects of chemo n radiation..they give you a list of growers and dispensaries. It is legal there..also had another friend up there with breast cancer that took the cannabis oil and it shrunk her tumor to nothing..it's amazing when you hear these people stories of how cannabis is helping them and how they outwardly talk about it in all the hospitals there now...finally something on the market besides pharmaceuticals to help people get through with their pain and suffering...it's plant life and it's healing....
Title: Re: Harvoni Side effects
Post by: BattleTheBeast on November 13, 2014, 07:35:58 am

A Hep-C infection is a qualified medical diagnosis in all states that allow medicinal marijuana use.

Best wishes, Mike

I don't think that is the case in New Jersey. I just checked yesterday and it's not on the list of acceptable reasons to have it approved.  http://www.nj.gov/health/medicalmarijuana/pat_faqs.shtml

I wish it was, might be worth trying with all the weird things going on with me.

~Mel~
Title: Re: Harvoni Side effects
Post by: bb23 on November 13, 2014, 04:59:52 pm
I just wanted to check in. It's been a week or so since my last entry. I will be coming up on 4 weeks tomorrow with Harvoni. I am very happy to announce that my blood tests from last week (week 3) came back very promising! It was already showing an Undetected viral load from over 6 million before treatment. AST = 25 and ALT = 27 which are both in normal range now. My Platelets are very low but that could be from my advanced liver damage which could be from cirrhosis. The cirrhosis is not for certain either since it was determined with blood tests. I am very hopeful and very excited about this miracle drug. I have no side effects now and when I did initially, they were manageable. If I have side effects, I don't even notice it any more so I may have adjusted and acclimated. You can all feel confident that this drug will give you very fast results and it's very tolerable. I am very blessed for this treatment finally after all these years. I am glad I held out and did not choose to do that poison interferon with Ribavirin. Good luck to all.
Bobby
Title: Re: Harvoni Side effects
Post by: Payson6 on November 13, 2014, 07:55:07 pm
I have had hep. C for 40 years, my husband had a liver transplant in 97 after finding out in 92 that we both had it.  Unfortunately he died in 2008 from kidney falior because of the transplant.  But he was blessed for those 11 years.  And now I am blessed to being able to start this cure with Harvoni.  I started Monday, Nov. 10.  That is why I got on the internet to see about these head aches and brain fog. They didn't mention brain fog as a side effect and it's not a biggie but was nice to come on here and see someone else mention brain fog.  This is day four.  I seem to have more energy then i have had before I started, no fatigue, today's headach is worse, going to sleep at 8:00 pm eastern normally 11 but tonight it's 8:00 now and I'm not tired maybe by 9
Title: Re: Harvoni Side effects
Post by: lporterrn on November 14, 2014, 01:49:22 pm
Welcome Payson6. Hope your treatment goes easy.
Title: Re: Harvoni Side effects
Post by: JillLynn on November 14, 2014, 02:52:46 pm
I am still super nauseous on Harvoni.   Now I have Zofran for the nausea and even that's not working.  I am so bummed it's affecting me this way.
   Trust me I'm still super grateful to be on this treatment....just wish the side effects weren't so bad for me.     I'm very small though and that may have something to do with it......100 lbs.
Title: Re: Harvoni Side effects
Post by: lporterrn on November 14, 2014, 07:10:44 pm
Hi JillLynn,
Nausea is a drag. A couple of things to try: Hunger can intensify nausea, so eat a cracker or other small piece of food every hour. Ginger helps with mild to moderate nausea. Peppermint, chamomile, or raspberry leaf tea may also alleviate nausea. Try an acupressure technique by applying pressure to the inside of your wrist, approximately two fingers above the crease where your hand meets your arm. You may also purchase wristbands developed for motion sickness sold in drugstores.

We don't know anything about cannabis and Harvoni, but it is times like this that I wish we had scientific data and Federal legal access to it. 
Title: Re: Harvoni Side effects
Post by: JillLynn on November 15, 2014, 11:50:30 am
Thank you for the suggestions and I agree about the cannabis.   I know you said you got headaches on harvoni.    2 more months.......I can do anything for 2 months to cure hep C.
Title: Re: Harvoni Side effects
Post by: fllazylady on November 15, 2014, 02:26:21 pm
A headache on the first day that's it I've taken no more Tylenol since I have a little bit of a slight feeling of like the flu but nothing that bothers me enough to keep me down
Have a great weekend
Title: Re: Harvoni Side effects
Post by: goodbyehepc on November 16, 2014, 12:29:56 pm
Hello all,
I want to write something positive about the Harvoni treatment, so that newcomers can get the feedback from a user who didn't experience the stated side effects. Remember that the side effects are in a low count and that the majority of people during trials did not experience them. I felt some of those side effects of fatigue and flu-like symptoms, feeling of heaviness etc in the first few days but then they dissipated each day and but by 7th day they were gone. Some days it feels like a headache is about to emerge but I take deep breaths , drink water and go for a power walk to oxygenate my body which helps.

I have also experienced a remarkably diffidence in energy. Each day I get more and more energy and I want to move and dod things. My sleep pattern was way off in the past few years only getting 4 or 5 hours of sleep and some nights 7 but I have purchased a sound machine last week and sleep with white noise and so far I've slept up to 8 hours the past three nights. This is a miracle. 

Please drink lots of water as you will need it taking this drug. And eat as healthy as you can, it will make a huge difference. I also suggest to take this at night after a meal. Although it's been only two weeks I have a feeling that my Hep C is nearly knocked out! I will get tested in a week or two.

Thanks and good luck to you all, feel free to ask any questions.

PS My doctor thinks I'm in early stage of liver disease (if that) and my alts had almost normalized on their own and viral count had been relatively low 1.3 million.
GHC
Title: Re: Harvoni Side effects
Post by: BattleTheBeast on November 16, 2014, 12:57:05 pm
Hi GoodbyeHepC,

So awesome you are doing well with the treatment and have minimal side effects. I have been trying to make sure that when I post issues I have going on I am blaming the Cirrhosis and not the treatment.  I have a very sick liver and it's impacted me in ways I am just finding out. My road to recovery started with a horrible bout of exhaustion to the point of almost calling an ambulance, because of that and many months of testing we finally figured out I had Hep C and probably had it for many many years.

These treatments are a miracle, if you think about how devastating Hep C can be and how debilitating it is then it's easy to deal with whatever minor side effects we have to cure it. These treatments are killing a very strong infection that doesn't die easily and there will be some type of impact in our bodies as it fights for freedom. As Goodbye previously stated; drinks lots of water, eat healthy and I'd like to add to listen to your body, when it needs to rest, let it and please follow your doctor's instructions because they have way more experience dealing with this beast then we do.

~Mel~
Title: Re: Harvoni Side effects
Post by: goodbyehepc on November 16, 2014, 03:35:13 pm
Hi GoodbyeHepC,

So awesome you are doing well with the treatment and have minimal side effects. I have been trying to make sure that when I post issues I have going on I am blaming the Cirrhosis and not the treatment.  I have a very sick liver and it's impacted me in ways I am just finding out. My road to recovery started with a horrible bout of exhaustion to the point of almost calling an ambulance, because of that and many months of testing we finally figured out I had Hep C and probably had it for many many years.

These treatments are a miracle, if you think about how devastating Hep C can be and how debilitating it is then it's easy to deal with whatever minor side effects we have to cure it. These treatments are killing a very strong infection that doesn't die easily and there will be some type of impact in our bodies as it fights for freedom. As Goodbye previously stated; drinks lots of water, eat healthy and I'd like to add to listen to your body, when it needs to rest, let it and please follow your doctor's instructions because they have way more experience dealing with this beast then we do.

~Mel~
It's good you distinguish between the hep c issues and side effects of the treatment. I do think the state of one's health and liver will determine the kind of reaction one will have to Harvoni (or to any drug treatment for that matter) but I was just going based on clinical trial reports regarding side effects for Harvoni, they don't even mention brain fog but I guess that's because that's to be expected that in the beginning of taking a heavy duty drug like this you get some kind of effect to your system. BTW the groups of people in the trials comprised people with Hep C and liver disease in of all stages. I wonder if they left some information that may have effected a small minority? 
Title: Re: Harvoni Side effects
Post by: JoeK9999 on November 17, 2014, 06:14:36 am
art1951: Can you explain your brain fog? After about 3 weeks of being on Harvoni,
I am getting a dizzy feeling in the brain, almost like a spatial disorientian at times.
It happens at night mostly. I take the pill at noon everday.
Title: Re: Harvoni Side effects
Post by: magicpill on November 17, 2014, 08:30:30 am
I think your disorientation might be do to other medications,I don't know if this is your case.I had those same side effects about 2nd week into treamant,adjusted my meds and symptons eased,i am 23 days into it and doing good.
Title: Re: Harvoni Side effects
Post by: art1951 on November 17, 2014, 08:40:00 am
art1951: Can you explain your brain fog? After about 3 weeks of being on Harvoni,
I am getting a dizzy feeling in the brain, almost like a spatial disorientian at times.
It happens at night mostly. I take the pill at noon everday.

I did have some brain fog for the first 5 days and the symptoms matched what you described above, after that it cleared up and I have not been bothered by it since.  I also experienced significant fatigue for the first week and then they disappeared over a 2 week period. 
The side effects do seem to vary significantly from individual to individual.  You can find plenty of people on here that have none at all.  I still have headaches but they are manageable with Tylenol and I think they are more related to stress and blood pressure but they do seem worse since I have started the Harvoni.  I am going to see the primary care dr about them this week.  I am cautious because I don't want them to panic and pull me off the medication.  I agree with all of those that refer to it as a wonder drug and am looking forward to my first blood results.

-Art
Title: Re: Harvoni Side effects
Post by: mario555 on November 17, 2014, 10:22:30 am
Just started Harvoni 3 days ago. I am on a 24 weeks plan because of my F4 and the fact I tried (unsuccesfuly) to do Interferon (2000) and PegIntron (2010). No side effects worth mentioning except a ''hunger'' which is not usual for me. I've been eating all the time over the last 3 days!
I'm F4 with no apparent cirrhosis and have had the disease for the last 35-40 years (my guess).  I am a 59 years old Canadian, in relatively good health, don't drink, somewhat careful with my food and an occasional pot smoker. I am supposed to get tested regularly to see how the medication works but I am not terribly interested to have those blood tests. The only blood test I'm interested in is the one 12 weeks after completion. With the 98%+ cure rate promised by the company, I don't want to get poked, prodded or examined anymore!
The cost is taken care of by my insurance company (max $50,000/yr) but we are at the end of 2014... So, I'll get a second $50K in 2015. The remainder is assumed mainly by Gilead's millennium organisation.  My net, out of pocket expense, should be around $20-35,000 after 24 weeks of medication.  Not cheap! but I think it has the potential of increasing my lifespan by 15 years so, it is something worthwhile.
Good luck to all. Plan carefully the costs (plan for the worst and hope for the best!), jump through the hoops as required, become friend with your pharmacist (can lower your cost by 7-8%), take a second job.  These are the things I've been doing over the last year while I was following all the details of Gilead. I did purchase some of their shares 1 1/2 year ago on the stock market to better follow them. I doubled my money in 18 months! The proceeds were used to help finance my medication.
Title: Re: Harvoni Side effects
Post by: Doluska on November 17, 2014, 10:38:28 am
Hi Mario! I am Canadien too. But I am on s/o plus RIBA. Don't know yet how long it will be, cose my MD told me it depends on blood work results. For me it was a real battle to get my pills, and I even didn't hope to get Harvony. Doktor told me : if you ready to weit half a year go ahead, but my enzymes were very hi, so I started my current treatment. I wanted to ask you: why your hope is only 15 years of life in case of successful treatment? I 've never heard about those numbers. Anyway, I wish you good luck and much more years ahead, than 15. D
Title: Re: Harvoni Side effects
Post by: mario555 on November 17, 2014, 11:10:56 am
You want to know how I estimate a 15 year additional life:  This is where I took the ''15 additional years'':  I'm an accountant so, I like to do estimates, count and evaluate possibilities, etc... At the rate my liver was getting worse (2000 I was f2, 2010 was f3, 2014 was/is f4) and I'm 59 so I ''estimated'' I'd be in compensated cirrhosis stage by age 66 and after that it is a slippery slope toward major health effects (my main concern was a backflow from my vena cava, a large vein under your liver).  I estimated I'd be dead (or wanting to be) before age 69.  So, if I get 'cured', I'd most probably have a more 'normal' death at the average age of 82-83 years old.
I needed to get started on an effective treatment because after all those years of living with Hep C, I was starting to have negative thoughts and poor behaviours.  I was becoming 'mad' at myself and the disease! I couldn't take it anymore! I wanted the virus out of my body!
I started following Gilead the maker of Harvoni 2 years ago right after they purchased the company who had invented the first part of the pill now used (Sovaldi).  Gilead paid $12 billions for that company so it got my attention! I followed the 3 phases for the trial and followed everything I could find about Hep C. People bitch about the high cost of the medication but, $12 billions was a hell of a big price to pay for an investigational pill. As I explained to my wife; you don't have to pay $900/day for the pill, you can try inventing one! Gilead has one which they paid dearly for.  If the pill makers don't get rewarded, they'll stop inventing new pills and I'll suffer.  So, I accept to pay whatever the cost because the alternative is ??????? 
Finally, enzymes are a poor predictor of your disease level. I was lucky enough to use a new machine that can 'read' the state of your liver in 2 minutes! I tried it at 2 different occasions and both readings were really close so, the machine works!  This reading will tell you how bad your liver is.
The pill got accepted in Canada at the end of October. My insurance had no specific restriction on which type of pills I take but had that maximum $50K per year. I'm just lucky the dates worked out the way they did but, I prefer to have a new mortgage on the house and bitch about paying it rather than being buried with a mortgage free home! (although my wife might not be as keen as me....)
Title: Re: Harvoni Side effects
Post by: cici3030 on November 17, 2014, 11:55:27 am
Hi all, I'm new here. Day 6 on Harvoni. F0-F1 which is confusing because my blood work and cat scan showed F3, but biopsy says F0-F1.  Diagnosed last year but suspect I have had it for about 10yrs. Genotype 1a. I'm not sure what my viral load is, a letter from the doctors office just said low viral load. I have been reading the posts which have been helpful. The side affects that I am having are fatigue, muscle aches that just started yesterday,  waking 2-3 times at night and the worst is the headaches.  The headaches started the 2nd day and have not stopped since. They are very intense and nothing seems to help. I have tried everything it seems. Let me just say that I have always had headaches but never this intense and for this long. My husband went and bought me some peppermint oil and a gel eye mask(cold) . This actual helped a little bit but I cant use them while working. I have also noticed my blood pressure is high since starting the meds. I'm really hoping that the headaches go away or at least get better during treatment. I haven't talked to the doctor about it because I don't think there is much he can do about it. Otc meds don't do any good so I stopped taking them. I'm praying that these symptoms get better and for all of you with your treatments. 
Title: Re: Harvoni Side effects
Post by: Anand on November 17, 2014, 12:10:14 pm
Hi everybody,

I just completed 5 days of 12 weeks of Harvoni treatment.  So far I have not had any side effects.  I had a BOT -1day (Beginning of treatment) blood work, the so called base line numbers that includes VL, Hbg, and Platelets.  I am due for a blood work for BOT+7days.  If not on Friday, then by Monday (11/24/14), I hope to get the BOT+7d numbers.  I will then write my Hep C bio and the results in my next blog.  Thanks, inhaste, Anand.
Title: Re: Harvoni Side effects
Post by: magicpill on November 17, 2014, 12:20:44 pm
Art are you drinking plenty of water and eating good
Title: Re: Harvoni Side effects
Post by: penny on November 17, 2014, 01:52:09 pm
Art
A guy on another board said he always has normal bp 120 but since harvoni it is 150.
Title: Re: Harvoni Side effects
Post by: art1951 on November 17, 2014, 02:58:27 pm
Hi all, I'm new here. Day 6 on Harvoni. F0-F1 which is confusing because my blood work and cat scan showed F3, but biopsy says F0-F1.  Diagnosed last year but suspect I have had it for about 10yrs. Genotype 1a. I'm not sure what my viral load is, a letter from the doctors office just said low viral load. I have been reading the posts which have been helpful. The side affects that I am having are fatigue, muscle aches that just started yesterday,  waking 2-3 times at night and the worst is the headaches.  The headaches started the 2nd day and have not stopped since. They are very intense and nothing seems to help. I have tried everything it seems. Let me just say that I have always had headaches but never this intense and for this long. My husband went and bought me some peppermint oil and a gel eye mask(cold) . This actual helped a little bit but I cant use them while working. I have also noticed my blood pressure is high since starting the meds. I'm really hoping that the headaches go away or at least get better during treatment. I haven't talked to the doctor about it because I don't think there is much he can do about it. Otc meds don't do any good so I stopped taking them. I'm praying that these symptoms get better and for all of you with your treatments.
I take 1000 mg of extra strength Tylenol twice a day and can usually manage the headaches. I just take the first dose as soon as I am awake.  I did have to take Excedrin migraine one day.

gool luck,
-Art

Title: Re: Harvoni Side effects
Post by: art1951 on November 17, 2014, 02:59:53 pm
Art are you drinking plenty of water and eating good

I am drinking about 64 oz of water and watching what I eat.

Thanks,
-Art
Title: Re: Harvoni Side effects
Post by: Doluska on November 17, 2014, 03:04:15 pm
Hi Mario! I was planning to take mortgage for the treatment too, but Olysio gave me pills as a compattionate case, and Sovaldi was paid by my insurience. I agree with You, that to get rid from the virus worth any possible try. About 15 years... I strongly believe that not us decide when, our numbers written up there, and we just can help ourselves by doing what we can. It helps, but decision is not ours. I wish you many healthy years ahead. And you will have it. Don't think that I am very religious, and naive person. I am a nurse, with long years of practice in 3 country's , including Canada, and I saw many miracles and many failures.  Who are really successive in treatment ? Optimists! Good luck with Harvoni! D
Title: Re: Harvoni Side effects
Post by: penny on November 17, 2014, 03:41:46 pm
CiCi and Art
Was your BP normal before?Are you on BP meds?

Hi Anand
Thanks for the update. So happy for you.
Title: Re: Harvoni Side effects
Post by: cici3030 on November 17, 2014, 04:11:20 pm
Penny
My blood pressure was high before starting Harvoni but under control. Now since starting the medicine, its on the high side again. I'm on a baby dose of Lisinopril 20mg. But may need to increase, will see what the doctor says.

-CiCi
Title: Re: Harvoni Side effects
Post by: fllazylady on November 17, 2014, 04:16:12 pm
 I have really been pondering on why I'm not having side effects like people are listing here, in hopes that I can find a way to have everyone feel the way I feel through the journey to our cure..my daily practice I meditate in the morning I meditate in the afternoon I try to stay calm as I can so that my body can heal. I don't really have to deal with going to work or taking care of children. I'm just trying to find a common thread to try to make this journey to our cure a good one for all. I don't believe that we have to suffer to get there..we have suffered enough..I have listed a Healing meditation so grab your headphones and let your body heal...http://m.youtube.com/watch?v=rEXa_3ELy_o
Sending you all Light n Love
Paulette
Title: Re: Harvoni Side effects
Post by: mario555 on November 20, 2014, 09:20:07 am
It is really encouraging to hear from people that now have many weeks of Harvoni treatments under their belts. What comes out generally from the posts is that the treatment is well tolerated by most.
My situation is F4 genotype 1a with a heavy viral load and 2 unsuccessful tries with Peg+RBV.
I only have one week of experience with Harvoni and the side effects are minimal. What did happen during these last 7 days are that I have an appetite that is surprising! From the second day on, I eat like a starved person. I also have more energy for little spurts during the day. I still get tired easy but I'm more willing to undertake activities than before. After 2-3 days, I felt some kind of pressure release around my liver like if it would have disgorged itself. I also have pinching 2-3 times a day.
It is nice to see that based on other people's experience, I should continue having little side effects.
Something to note:  I never had high blood pressure in my life. I usually get 120/80. After 7 days, I now have readings of 142/98 which is still low on the scale but way off for me.  I would suggest that people who had borderline high pressure to keep an eye on this reading. I'll be taking care of my salt intake and I'll make sure I go for walks more often.
Other than that, good luck to all. This is the best medicine to date. 23 more weeks to go!
Title: Re: Harvoni Side effects
Post by: Anand on November 20, 2014, 11:28:36 am
Hi Penny,


thanks for your interest and concern.  I appreciate that. Now I have a question. You are asking a lot questions.  Are you a patient with Hep C?  or are writing a book?  Thanks.   Anand
Title: Re: Harvoni Side effects
Post by: Anand on November 20, 2014, 12:14:13 pm
Hi Penny,

If you do write a book you only add to the knowledge base and it is a good thing.  I omitted to include in previous post.  Thanks.   Anand
Title: Re: Harvoni Side effects
Post by: JillLynn on November 24, 2014, 10:11:57 pm
I'm feeling very fatigued the last 2 days on harvoni.   i'm into my 6th week AND can not sleep on this stuff for some reason.   I'm up and down all night and I'm sure that doesn't help with the fatigue and brain fog.   I feel like I have a fever but when I check I don't.  Sleep would sure help.   But all in all....this is not so bad at all.  Next Monday is my 2nd viral load test.   My dr. added in another one instead of waiting for week 12 because we were expecting "undetectable" at week 4 and it didn't happen.   But oh so close! 

Jill

Thank you for all the shares y'all.
Title: Re: Harvoni Side effects
Post by: Lynn K on November 24, 2014, 10:33:06 pm
I take 1000 mg of extra strength Tylenol twice a day and can usually manage the headaches. I just take the first dose as soon as I am awake.  I did have to take Excedrin migraine one day.

gool luck,
-Art

Hi Art
You should have a look at this about tylenol

http://www.fda.gov/Drugs/DrugSafety/ucm239821.htm

FDA Drug Safety Communication: Prescription Acetaminophen Products to be Limited to 325 mg Per Dosage Unit; Boxed Warning Will Highlight Potential for Severe Liver Failure


and

http://www.cnn.com/2014/01/15/health/fda-acetaminophen-dosage/

The FDA has set the recommended maximum for adults at 4,000 milligrams per day. It's easier to reach this limit than you might think; one gel tablet of Extra Strength Tylenol, for example, contains 500 mg.


Just an FYI to all yuo tylenol takers out there to be careful especially if you have liver damage

Best to all
Lynn
Title: Re: Harvoni Side effects
Post by: mario555 on November 25, 2014, 08:08:21 am
I'm only on my second week with Harvoni and I can't sleep!!! I tried taking the pill at 9 pm before going to bed and I get a kind of ''heat puff'' up to 2-4 hours after taking the medication. I can't fall asleep while ''puffing''. I then tried to take the medication earlier (6 pm) and now I just can't sleep!
Anyone of you who encountered this side effect at the beginning of treatment? Does it go down in intensity or does it increases?
I haven't experienced 'brain fog' or tiredness (after 2 weeks) but I'm just buzzed out and can't seem to have a full night of respite. PLease give me your tricks if you have any because I'm on a 24 weeks treatment and I don't really want to wait 22 more weeks to sleep!
Title: Re: Harvoni Side effects
Post by: JillLynn on November 25, 2014, 09:30:33 am
I'm with ya Mario.  i can not sleep on this harvoni.  I'm going to be watching to see what others are doing to sleep.  Hopefully we can get a solution.  I don't like ambien, and the other things they use for sleep like tranzadone or sinequan .....so I'm just dealing right now but some tips on what else might do the trick would be greatly appreciated!     melatonin doesn't work either for me, have tried it several times.
Title: Re: Harvoni Side effects
Post by: art1951 on November 25, 2014, 11:47:44 am
Hi Art
You should have a look at this about tylenol

http://www.fda.gov/Drugs/DrugSafety/ucm239821.htm

FDA Drug Safety Communication: Prescription Acetaminophen Products to be Limited to 325 mg Per Dosage Unit; Boxed Warning Will Highlight Potential for Severe Liver Failure


and

http://www.cnn.com/2014/01/15/health/fda-acetaminophen-dosage/

The FDA has set the recommended maximum for adults at 4,000 milligrams per day. It's easier to reach this limit than you might think; one gel tablet of Extra Strength Tylenol, for example, contains 500 mg.


Just an FYI to all yuo tylenol takers out there to be careful especially if you have liver damage

Best to all
Lynn

Lynn,
I have been aware of the issues with Tylenol and was surprised when my doctor recommended it.  I have since gone to my primary care physician and determined that the headaches were due to elevated blood pressure.  The blood pressure is now under control and the headaches have gone away.  We are going to adjust/remove the blood pressure medication after I am off the Harvoni.

Thanks,
Art
Title: Re: Harvoni Side effects
Post by: cici3030 on November 25, 2014, 12:36:39 pm
Hi all, on Day 14 on the Harvoni. I was suffering from very bad headaches for a while, and blood pressure was high. But the last couple of days have been very good. Very little headaches and blood pressure is within the normal range. I have not had trouble going to sleep but do wake up 2-3 times at night, can usually go back to sleep pretty easily so far. It does seem like the longer I take the meds the more difficulty I have with waking up during the night. I take the meds at 8pm.  I am so thankful to get relieve from those headaches that I can handle some lost sleep.  I have noticed getting brain fog periodically but doesn't last that long. Good luck to the rest of you.
Title: Re: Harvoni Side effects
Post by: art1951 on November 25, 2014, 01:43:05 pm
I typically get 5 hrs of sleep but my pcp has asked me to up it to 8 hrs.  He also prescribed .25 mg of Clonazepam to relieve the stress or anxiety and help me get to sleep.  It is working well so far.  I am under quite a bit of stress at work and head up an engineering organization.

-Art
Title: Re: Harvoni Side effects
Post by: Rubye on November 25, 2014, 02:25:45 pm
Art, I have found that the quality of sleep I get means everything on these drugs (S/O for me). I think Harvoni and S/O are quite similar and I am now going into week 9 and feeling pretty normal now with no sides. I did have the BP problem and a lot of other stuff that almost made me quit. However, all my labs are those of a normal person, except for platelets, and I am undetected with only 3 more weeks to go.

So, hang in there. I used to read that the times passes so fast. Well, when you're in the midst of being uncomfortable it doesn't seem to but looking back I can seriously hardly believe I have come this far. You have a mentally demanding job being an engineer so get that sleep. :)
Title: Re: Harvoni Side effects
Post by: fllazylady on November 25, 2014, 07:55:20 pm
Seems like a lot of people here have a sleep issues why don't you all switch dose to a.m. after breakfast. I dose at 10AM after breakfast.  I have had no side effects and feel great energy during the day and I sleep wonderful at night just change the dose time..hope you get better sleep. It's very important to get rest when you have Hep..
The only thing I have noticed is my appetite is huge..LOL

Send you all Big Hugs
Title: Re: Harvoni Side effects
Post by: JoeK9999 on November 26, 2014, 12:46:57 pm
Just for everbody's info:

My Hep doctor told me that the HVC RNA Quantitative (viral load test) is not as accurate as the HCV RNA Qualitative test. A viral load test that comes back as <15 UND, could really be a POSITIVE HCV RNA Qualitative test. He says any test with undetected as a result is meaningless. You want to see
Negative or Positive only for a determination.

I know everyone sees all the viral load tests coming back as undetectable after 3-4 weeks, but if you get a the Qualitative test back as positive don't get upset. 

Title: Re: Harvoni Side effects
Post by: magicpill on November 26, 2014, 01:10:11 pm
Good information,i am waiting on results 1st blood test on 30 day on harvoni.I am noe 33 days into treatment
Title: Re: Harvoni Side effects
Post by: JoeK9999 on November 26, 2014, 01:44:04 pm
Magic,
My Hep doc didn't want to take any HVC RNA tests until 24 weeks after done with treatment. I did get a cbc and a liver panel after 10 days and all was normal including a big drop in ALT and AST. He didn't seem concerned about testing. He basically said take all the meds for 8 weeks and I should be cured. I am on the 8 week plan as I have never been treated, no cirrhosis and my prior viral load was under 6 million.

I had a scheduled appointment after 27 days of  Harvoni and practically had to beg him for a viral load test. He ordered the Qualitative test instead and I got a positive back today (not happy) especially since he said he already knew I would show negative. Anyway I am on day 34 about the same into it as you. Let me now how your test comes out.
Title: Re: Harvoni Side effects
Post by: Rubye on November 26, 2014, 02:47:19 pm
My doctor orders the quanitative test because my hospital uses the newer Abbott test --

"Some newer viral load tests can detect very low amounts of viral RNA, and some laboratories no longer do qualitative HCV RNA tests if they use one of these versions of viral load testing."  http://www.hivandhepatitis.com/hep_c/hepc_test.html


The NP who gave me my prescription didn't want to order any viral loads during tx so I returned to my original gastro who orders the viral loads for me. I had one at 4 weeks, then at 8 weeks and will have new ones at one week EOT and 12 weeks EOT. I think I would go crazy not knowing even though I understand being undetected during treatment is essentially meaningless and it's the EOT 12 that counts. Still...
Title: Re: Harvoni Side effects
Post by: JoeK9999 on November 26, 2014, 04:01:41 pm
Rubye,
Thanks for the info and link. It still seems like the quantitative is definitive test
which says either positive or negative. When I have had the viral load test and most people who get one 15 is usually the low end. I would have liked to have known
if my viral load was near or under 15 rather than a positive or negative.
My doc without wanting tests says 8 weeks for me and check for an SRV in 6 months.
Title: Re: Harvoni Side effects
Post by: JoeK9999 on November 26, 2014, 04:02:52 pm
I meant "qualitative" is a definitive test.
Title: Re: Harvoni Side effects
Post by: Rubye on November 26, 2014, 04:16:19 pm
This concerns me because it makes me worry if my doctor is doing the right test, but then I have to think he knows what is best because he on the cutting edge of Hep C treatment as a hepatologist in a transplant center.

My two VL's while on treatment have been quanitative. The first one at 4 weeks said I was <12 with a weak positive and it also said I was undetected. This last test, which was also quanitative, said nothing but that I was undetected. Same lab. Same test. Different results.

Maybe qualitative is best for saying simply whether or not a person has the virus vs the quanitative which says more precisely what a person's viral load is.


Title: Re: Harvoni Side effects
Post by: Bucky on November 26, 2014, 04:17:38 pm
This is what mine looked like on 9/18/14 EOT. Qualitative is not mentioned. I see an IDS at a major teaching hospital so I would say this is the most current test method. I could be wrong though.
Component Results
Component   Standard Range   Your Value
HCV, RNA QUANTITATIVE       TARGET NOT DETECTED
HCV RNA ULTRALOG       TARGET NOT DETECTED
HCV RNA COMMENT       REFERENCE RANGE: TARGET NOT DETECTED
Results determined using the COBAS Ampliprep Taqman real time PCR. The reportable linear range of this assay is 43 to 6.9E+0.7. This test is intended for use as an aid in the management of HCV-infected individuals undergoing anti-viral therapy.
Bucky
Title: Re: Harvoni Side effects
Post by: JoeK9999 on November 26, 2014, 06:18:29 pm
I wouldn't worry about the tests your doctor is doing. I'm sure all the tests today are fine. I have to get all mine done through Labcorp.
I think you're right about the preciseness of the viral load. I guess my doc doesn't careand just wants to see if it's still there or not. But then again he didn't even want to see any tests until 6 months EOT. It's his belief, if you take the pill everyday and don't abuse body, you will be cured from Harvoni. Based on all the results it looks like you get to undetected at some point within a few months and stay that way and a small percentage don't stay that way. I never read anything about the people who didn't respond. For all we know, they didn't take all their meds and went out drinking and drugging. Thinking back to my younger days, I wouldn't have paid much attention to it and gone on my merry way. It would be interesting to hear from the people who failed from Harvoni. It's a crap shoot.
Here's an interesting fact sheet I came across.
http://hcvadvocate.org/hepatitis/factsheets_pdf/Phase_3_Genotype_1_SOF-LDV.pdf
Title: Re: Harvoni Side effects
Post by: Rubye on November 26, 2014, 06:33:17 pm
I hope that's true of the Sovaldi/Olysio also. Gilead has called me a couple of times as a reminder to pick up my new script and I've thought how the heck could anyone possibly forget. Unless they have HE. I suppose I'm rather naive about the possibility of someone drinking or doing drugs while on tx, but perhaps that is indeed why some people fail tx. To me it is such a gift to be able to have these drugs that I simply don't get being irresponsible with them. I don't normally talk this way but for this I am a bit sanctimonious.  :)
Title: Re: Harvoni Side effects
Post by: goodbyehepc on November 26, 2014, 06:34:50 pm
I'm feeling very fatigued the last 2 days on harvoni.   i'm into my 6th week AND can not sleep on this stuff for some reason.   I'm up and down all night and I'm sure that doesn't help with the fatigue and brain fog.   I feel like I have a fever but when I check I don't.  Sleep would sure help.   But all in all....this is not so bad at all.  Next Monday is my 2nd viral load test.   My dr. added in another one instead of waiting for week 12 because we were expecting "undetectable" at week 4 and it didn't happen.   But oh so close! 

Jill

Thank you for all the shares y'all.

Hi Jill
I am almost done with week 4 on Harvoni and I got a bit fatigued the last week. Brain fog has increased and I have had trouble sleeping too. I also have night sweats that wake me around 3:30 in the morning. I have bursts of energy )mostly the first two weeks. I should get myfirst test results back next week since bening treatment.

all the best
GHC
Title: Re: Harvoni Side effects
Post by: Lynn K on November 26, 2014, 08:22:45 pm
Hi JoeK999

In defense of us Sovaldi Olysio relapsers the not so happy few that we are...
I would like to point out that as a 3 time nul responder to previous interferon based treatment diagnosed with cirrhosis in 2008 GT 1a.

I am neither a drinker or a drugger and I did not miss a dose of Sov/Oly on my 12 weeks treatment. Some of us are just very difficult to cure especially those of us with cirrhosis.

I just hope that 24 weeks of Harvoni will get it done this time.

Cheers
Lynn
Title: Re: Harvoni Side effects
Post by: Rubye on November 26, 2014, 08:41:29 pm
I hope the Harvoni works for you Lynn. Perhaps it is as simple as needing more time. I know I worry about not making it on the s/o because I have cirrhosis and only have 12 weeks.
Good luck to you.
Title: Re: Harvoni Side effects
Post by: Lynn K on November 26, 2014, 09:58:00 pm
Hi Rubye

I recently saw the FDA has approved Sovaldi Olysio as a combo treatment and that "the FDA recommends 12 weeks of Olysio-Sovaldi for people without cirrhosis and 24 weeks of the combination therapy for those with cirrhosis."

http://www.aidsmeds.com/articles/Olysio_Sovaldi_approval_1667_26373.shtml

http://www.prnewswire.com/news-releases/olysio-simeprevir-gains-additional-fda-approval-as-once-daily-all-oral-interferon--and-ribavirin-free-treatment-option-in-combination-with-sofosbuvir-for-adults-with-genotype-1-chronic-hepatitis-c-infection-281674661.html

https://www.olysio.com/shared/product/olysio/prescribing-information.pdf

Maybe you could ask your doctor about extending your treatment duration to 24 weeks. I believe had I been able to do 24 weeks I would have made SVR but of course I will never know for sure.
Title: Re: Harvoni Side effects
Post by: Rubye on November 26, 2014, 10:17:16 pm
Thanks Lynn. However, I already asked and they said my insurance won't pay. That's what they told me since January but they finally broke down and gave me the 12 week script. Then I had to go in circles with the doctor to get him to do an appeal letter. It's Oregon politics around people with Extra Help. They've made statements like no one with Medicaid will get Sovaldi in the Willamette Valley. So, I feel lucky to have gotten the 12 weeks. Plus, I really don't have the energy for another fight. It's not the insurance for me but rather the doctors.

But, thank you.
Title: Re: Harvoni Side effects
Post by: Lynn K on November 26, 2014, 10:21:17 pm
Yeah can relate to fighting with insurance so good luck I hope you don't have to be back fighting them again later for Harvoni I have read the odds for people with cirrhosis on 12 weeks Sov/Oly are about 86% for our cohort in clinical trials hope you fall on the good side of the odds

Best to you and yours
Lynn
Title: Re: Harvoni Side effects
Post by: Rubye on November 26, 2014, 10:30:53 pm
86% is not too shabby. We shall see.
Another reason I don't want to fight for another 12 weeks is that I've had a very hard time the last 8 weeks. If I should fail with the S/O I want to go with Abbvie but maybe wait a few months to see how others do.

Have you already started the Harvoni Lynn?
Title: Re: Harvoni Side effects
Post by: Lynn K on November 27, 2014, 12:05:27 am
Yes day 9 down 159 days to go. So far just tired maybe a bit more than usual

That's about it

Happy Turkey day to all
Lynn
Title: Re: Harvoni Side effects
Post by: Ralph on November 28, 2014, 04:46:12 pm
Started HARVONI 10 days ago on an 8 week program. Treatment naïve, viral load 3.9m, normal enzyme levels, stage 3 level 3. I take my pill each morning about 7am without food and then eat within the next hour. I'm continuing to take most all supplements such as multi-vitamins, heart health and prostate health supplements.
I am waiting to experience my first noticeable side effect. So far everything about this new drug seems to good to be true. I hope it isn't. Feeling thankful that the timing of this new treatment lined up for me.
I like to have a beer now and then, but haven't. Can anyone tell me that would be ok while on this therapy?
Title: Re: Harvoni Side effects
Post by: goodbyehepc on November 28, 2014, 05:24:25 pm
Started HARVONI 10 days ago on an 8 week program. Treatment naïve, viral load 3.9m, normal enzyme levels, stage 3 level 3. I take my pill each morning about 7am without food and then eat within the next hour. I'm continuing to take most all supplements such as multi-vitamins, heart health and prostate health supplements.
I am waiting to experience my first noticeable side effect. So far everything about this new drug seems to good to be true. I hope it isn't. Feeling thankful that the timing of this new treatment lined up for me.
I like to have a beer now and then, but haven't. Can anyone tell me that would be ok while on this therapy?

May I ask how they determined stage 3 level 3?
Title: Re: Harvoni Side effects
Post by: goodbyehepc on November 28, 2014, 05:25:11 pm
Started HARVONI 10 days ago on an 8 week program. Treatment naïve, viral load 3.9m, normal enzyme levels, stage 3 level 3. I take my pill each morning about 7am without food and then eat within the next hour. I'm continuing to take most all supplements such as multi-vitamins, heart health and prostate health supplements.
I am waiting to experience my first noticeable side effect. So far everything about this new drug seems to good to be true. I hope it isn't. Feeling thankful that the timing of this new treatment lined up for me.
I like to have a beer now and then, but haven't. Can anyone tell me that would be ok while on this therapy?

In general liver disease and any kind of alcohol are not a good mix.  Maybe you might want to go through the process of treatment, then give your liver a chance to regenerate and heal?
Title: Re: Harvoni Side effects
Post by: Ralph on November 28, 2014, 06:40:25 pm
Stage and level were determined with a biopsy take during a surgery 2 years ago. My enzyme levels have most always been normal which contradicts the biopsy findings.
I'm just craving a beer, not indulging. I am looking forward to cracking one open in a few months though!
Title: Re: Harvoni Side effects
Post by: goodbyehepc on November 28, 2014, 06:47:55 pm
Stage and level were determined with a biopsy take during a surgery 2 years ago. My enzyme levels have most always been normal which contradicts the biopsy findings.
I'm just craving a beer, not indulging. I am looking forward to cracking one open in a few months though!

Yea I it does seem strange to have normal enzyme levels at that stage. Well good luck with it all.
Title: Re: Harvoni Side effects
Post by: Lynn K on November 28, 2014, 09:34:32 pm
Hi Ralph

ALT and AST levels can be low or even normal. But the duration of years of your liver being under constant attack from hep c is why you are now F3 which is just one stage of liver damage below cirrhosis. Seeing as your test was a couple of years back and I assume you have been drinking at least occasionally since then it is entirely possible you could now have cirrhosis.

Just wondering if you have discussed with your liver specialist their opinion on your continuing consumption of alcohol.

Once upon a time I was grade 1 on my first liver biopsy back in 1993 but 15 years later I was told in Jan 2008 I have cirrhosis. I used to love beer spent 8 years drinking beer in the land of beer Germany while I was in the Army. Can't ever have a beer again now not even if I finally beat hep c.

I just hope you will think about how much you really need that beer. Even if you are cured F3 is considered advanced fibrosis and is treated as urgent need for treatment just as much as F4 cirrhosis
Best wishes and hope you make SVR
Lynn
Title: Re: Harvoni Side effects
Post by: dragonslayer on November 29, 2014, 10:49:55 am
Rubye,
Thanks for the info and link. It still seems like the quantitative is definitive test
which says either positive or negative. When I have had the viral load test and most people who get one 15 is usually the low end. I would have liked to have known
if my viral load was near or under 15 rather than a positive or negative.
My doc without wanting tests says 8 weeks for me and check for an SRV in 6 months.

Thats exactly what my hepatologist said.. Im also on 8 wks treatment having commenced treatment 4 days ago .. I asked him didnt he want to test me right after treatment?  But he seemed only interested in the 6 month result.. So, we wait... With a cure rate of around 95% though, it doesnt seem too much of a gamble...
Title: Re: Harvoni Side effects
Post by: BattleTheBeast on November 29, 2014, 11:18:37 am
Stage and level were determined with a biopsy take during a surgery 2 years ago. My enzyme levels have most always been normal which contradicts the biopsy findings.
I'm just craving a beer, not indulging. I am looking forward to cracking one open in a few months though!

Hi Ralph,

I am stage 4, don't drink and never really did. I even quit smoking a year ago before I even knew about the Hep C; believe me when I tell you that you do not want your virus to progress. I feel like crap all the time and it stinks!


~Mel~

Title: Re: Harvoni Side effects
Post by: UndetectableC on November 29, 2014, 04:37:56 pm
This thread is great - thank you to all who shared!  I was feeling alone out there with my sides, and just a bit whiny. I'm on the 8 week Harvoni regimen and have had lots of mild to moderate side effects. I do tend to be sensitive to medications in general.
Week 1 - burst of energy the first couple days, tummy troubles, flushing, chills, side aches
Week 2 - all the same side effects, plus super irritable and tired, had 2 boils, lost 8lbs.
Week 3 - same sides plus head fog rolled in, leg cramps, back cramps, but less irritable, appetite returned - gained back 2 lbs
Week 4 - Same sides, plus super irritable again, more 'spacy', cramps persist, night sweats increased, appetite decreased, lost 2lbs again, blurry vision now and then
Week 5 - less irritable, insomnia, continued night sweats and a nosebleed so far this week. Starting to feel pressure headaches.

I probably forgot something, but that's the majority of my sides and experiences. The only pain meds I've used is analgesic cream for the cramps.

It's unpleasant, but not debilitating, thankfully. But I don't feel comfortable driving with the vision issues and spacy head.

Thanks to everyone for sharing their experiences,too. 
Title: Re: Harvoni Side effects
Post by: Anand on November 30, 2014, 08:53:15 pm
Harvoni VL after 1 week***

Hello everybody,

I hope y’all had a nice Thanksgiving.  I have some good news to share.  This is about viral load after one week after BOT (Beginning Of Treatment). Actually it is after 7 ½ days, to be technical about it, due to the fact that I consumed 8th tablet of Harvoni at 8 PM and the blood drawn the next morning.   I had indicated that the information may be available last Monday but due to some snafu I was able to get it only yesterday. Be that as it may, you will see the results later. Now briefly my Hep C bio.

I had a heart attack when I was 50 years of age, 27 years ago. I also had Hep C laden blood transfusion at that time.  I was told in 2006, the then available interferon + Ribavarin are not suitable due to my weakened-heart and low percentage of cure rate.  It was suggested that I wait as there were some promising research going on.  Now fast forward to 2014.  When Sovaldi touted to be the forerunner and savior of  new class of medicines for Hep C, I sprang into action only to find out that I wait until October 10th.  The villains are Ribavarin due to its side effects of anemia and Olysio with its drug interference with Coumadin that I take as blood thinner.  Now hello to 12 weeks of  Harvoni.

My geno type is 1a, VL is in the range of 1.18 to 1.86 million IU/mL ( 3 measurements at 6 months span) with BOT-1 day or baseline data at  1.33 million IU/mL, am treatment naïve and my liver at the cusp of stage 3 and stage 4. After some stress test of my heart I was declared by the cardiologist that I was good to go.

I took my 16th tablet today and I have had no side effects so far.

 Here are the results.  I have given results as BOT-1d/BOT+7d for easy comparison.

Viral load (IU/mL):    1.33 million/20  yes 20
                                MDL or Minimum Detection Limit is 15 IU/mL                 
AST (U/L):                 74/21
ALT (U/L):                    82/29

I am not fooling myself that the game is over.  I have long ways to go. Thanks.   Anand

***(written on 11/27/14 but posted here on 11/30/14)
Title: Re: Harvoni Side effects
Post by: gam1959 on November 30, 2014, 09:21:54 pm
I am new to the forum and due to start Harvoni this Tuesday Dec 2,2014 . Is this your first treatment ? What could I expect in regards to working daily?
Gerry M
Title: Re: Harvoni Side effects
Post by: Lynn K on November 30, 2014, 09:36:48 pm
Hi Gerry

I just took Harvoni pill number 13 on my 24 week treatment. I have treated 3 times with interferon based treatments (null responder) an once with Sovaldi Olysio (relapsed) I am 56 y/o female diagnosed cirrhosis Jan 2008 on biopsy.

I work full time and continue to do so. I think I may be extra tired of maybe just the Thanksgiving turkey.

Good luck on treatment
Lynn
Title: Re: Harvoni Side effects
Post by: gam1959 on November 30, 2014, 09:56:28 pm
Thank you Lynn for sharing and giving me hope to work .  I realize that it is easy to get caught in comparing side affects from self.  This is my first treatment and have refused to take interferon and now my time has come to try noninterferon.  I do have some anxiety for side affects. My faith will carry me and prayer.

Thank you Gerry
Title: Re: Harvoni Side effects
Post by: Mike on November 30, 2014, 10:01:30 pm
Hey Anand,

That's great news! These new drugs are working miracles everyday!

Best wishes, Mike
Title: Re: Harvoni Side effects
Post by: sunrise on November 30, 2014, 10:15:05 pm
Hey warriors
      Hope you a had a grateful and wonderful Thanksgiving.  On my 64th day od S/O treatment.  Love my ambien 5 mg a night and a wonderful nights sleep. Doc had told me ( which I don't drink) that drinking alcohol is like putting fuel on the fire. So IMO it is imperative that you don't drink while on treatment.  I am hepc g1 had it about 23 yrs diagnosed in June with 5 mil vl. My 4 week PCR was no numeric quant of virus yay! My alt and ast have dropped from start 46, 25 to 17, 13. Amazing huh. It is a blessing my doc told me I was at stage 1. Wierd as o was no angel all these yrs. Wanted to waot for Harvoni bit needed to start tx right away as o was progressing rapidly. Good luck warriors keep up the good fight!!..... Sunrise
 
Title: Re: Harvoni Side effects
Post by: sunrise on November 30, 2014, 10:17:32 pm
Oh and gam 1959 I have had anxiety as well. Doc gave me.5 mh of klonapam. Does the trick.
Title: Re: Harvoni Side effects
Post by: Anand on December 01, 2014, 10:45:32 am
Mike,

Thanks. You guys are the real warriors.  I did not go through the early days of agony of interferon and ribavirin.  Now I have a question.

 When I calculate 7 days after beginning of treatment I actually use the residence time of the Harvoni in the blood stream.  for example when I take my first tablet on, say, Wednesday 8 PM, the medicine has been in the blood for 1 day at 8PM Thursday and so on. Therefore the 8th tablet taken on the following Wednesday 8PM will signal that Harvoni has been in the blood stream for 7 days.  Am I right?

Thanks.  Anand
Title: Re: Harvoni Side effects
Post by: elizabethfaraone on December 01, 2014, 01:34:04 pm
Thank you for posting this topic.  I'm waiting for HARVONI to be delivered to me today (Dec. 1) but the package has seemed to have lost it's way.  It will find it's way to me soon.  I'm so excited!

I will be 53 years old in January.  I have genotype 1a with a mutation called Q80K polymorphism and have avoided treatment since diagnosis in 2001 with the belief that a safe and effective cure would be developed.  I can't be sure how or when I contracted the virus but I can point to at least 10 instances of possible transmission from childhood to diagnosis.  I'm a healthy eater, have never been a user of alcohol, tobacco or drugs and have become very gentle with myself.  Recent fibroscan, ultrasound and blood work indicate I am healthy.  I've been battling chronic fatigue and body aches that have increased in severity over the past 20 years.  I also have a chronic lung condition (probably genetic) that leads to lung collapse when I am in a weakened state and this the main reason I avoided treatment with Interferon.

I have paid close attention to the developments in treating hepatitis C and was very excited when Michael Sofia was successful in treating patients three years ago with the medicine he developed while working at Pharmasset.  Two years ago, I began my quest to start treatment with what is now called Sovaldi.

I'll make sure to post any side effects I experience while taking HARVONI.  Thank you for letting me join this discussion.
Title: Re: Harvoni Side effects
Post by: jberlin on December 01, 2014, 01:36:31 pm
Mario,

Continued good luck & keep us posted as it has been a few days. I hope the treatment is going even better than their stock.

-jack
Title: Re: Harvoni Side effects
Post by: jberlin on December 01, 2014, 01:39:53 pm
Elizabeth, Good luck as you begin, and do keep us updated.  -jack
Title: Re: Harvoni Side effects
Post by: dragonslayer on December 01, 2014, 01:49:50 pm
Just started Harvoni 3 days ago. I am on a 24 weeks plan because of my F4 and the fact I tried (unsuccesfuly) to do Interferon (2000) and PegIntron (2010). No side effects worth mentioning except a ''hunger'' which is not usual for me. I've been eating all the time over the last 3 days!
I'm F4 with no apparent cirrhosis and have had the disease for the last 35-40 years (my guess).  I am a 59 years old Canadian, in relatively good health, don't drink, somewhat careful with my food and an occasional pot smoker. I am supposed to get tested regularly to see how the medication works but I am not terribly interested to have those blood tests. The only blood test I'm interested in is the one 12 weeks after completion. With the 98%+ cure rate promised by the company, I don't want to get poked, prodded or examined anymore!
The cost is taken care of by my insurance company (max $50,000/yr) but we are at the end of 2014... So, I'll get a second $50K in 2015. The remainder is assumed mainly by Gilead's millennium organisation.  My net, out of pocket expense, should be around $20-35,000 after 24 weeks of medication.  Not cheap! but I think it has the potential of increasing my lifespan by 15 years so, it is something worthwhile.
Good luck to all. Plan carefully the costs (plan for the worst and hope for the best!), jump through the hoops as required, become friend with your pharmacist (can lower your cost by 7-8%), take a second job.  These are the things I've been doing over the last year while I was following all the details of Gilead. I did purchase some of their shares 1 1/2 year ago on the stock market to better follow them. I doubled my money in 18 months! The proceeds were used to help finance my medication.

I wish I had bought shares.. Well, I kind of did, indirectly, via my mutual funds.. But I knew that stock would explode.. after all, Abvie, Gilead, BMS, etc, etc, should all make out like a bandit once they start reaping the rewards of their investment in this field. 
Title: Pinching pain in my liver
Post by: mario555 on December 01, 2014, 05:07:38 pm
I'm in treatment with Harvoni for 3 weeks now. I have 24 weeks to do for my 1a F4 status. Everything is going well with few side effects EXCEPT for "pinching pains" in my liver every 2nd day or so. Pain is similar to liver pains I used to have while not on treatment. Anybody on Harvoni  has any of those?
Title: Re: Harvoni Side effects
Post by: Doluska on December 01, 2014, 05:16:52 pm
Hi Mario! I have kinda feeling of heaviness  at my liver site. My Md. told that this is good sign, and he is on this field more than 50 years. D
Title: Re: Harvoni Side effects
Post by: dragonslayer on December 01, 2014, 05:24:06 pm
Hi Mario! I have kinda feeling of heaviness  at my liver site. My Md. told that this is good sign, and he is on this field more than 50 years. D

Im not feeling heaviness in my liver site.. Is this a bad sign?
Title: Re: Harvoni Side effects
Post by: Doluska on December 01, 2014, 05:50:00 pm
I don't think so. Most of the side effects and feelings are very individual. My liver is not in the best condition, it may explain some of the simptoms too. Or my doc. Just wanted to give me some encouragement. We are clinging to any good sign with hope, we want to be cured so badly! I am so scared and trying my best to turn anything to good and promising...
Title: Re: Harvoni Side effects
Post by: dragonslayer on December 01, 2014, 05:54:30 pm
I don't think so. Most of the side effects and feelings are very individual. My liver is not in the best condition, it may explain some of the simptoms too. Or my doc. Just wanted to give me some encouragement. We are clinging to any good sign with hope, we want to be cured so badly! I am so scared and trying my best to turn anything to good and promising...

Over the last few years, I would get occasional bouts of Upper Right Quadrant pain... It was a mild kind of heaviness that would come and go.  Hasnt happened recently, but a month ago when I saw my hepatologist to get my prescription handled, they asked if i had any symptoms..  He did my bx for me which turned out very minimal liver damage, so when I told him I had this periodic upper right side pain, he tells me I dont have any marked fibrosis or inflammation, and that the liver doesnt 'feel' pain, so its not that.. Weird how so many patients are reporting the same thing, and the hepatologists almost universally deny it exists!
Title: Re: Harvoni Side effects
Post by: Doluska on December 01, 2014, 06:49:00 pm
I'd tell more: my doc. Told me that I have no side effects, and it is only in my head. I was so mad!! May be he compeers to interferon ? But I was feeling awful first weeks, and even now, after 5 weeks I am weak and shaky. This site gave support and feeling that I am not alone. But, I am trying not to pay attention to scary and pessimistic notes. Only hope and positive news!
Title: Re: Harvoni Side effects
Post by: elizabethfaraone on December 01, 2014, 07:12:16 pm
I'd tell more: my doc. Told me that I have no side effects, and it is only in my head. I was so mad!! May be he compeers to interferon ? But I was feeling awful first weeks, and even now, after 5 weeks I am weak and shaky. This site gave support and feeling that I am not alone. But, I am trying not to pay attention to scary and pessimistic notes. Only hope and positive news!

It's easier to tell the patient they don't have side effects than to collect the data.  So we just have to talk to each other to get better understanding.
Title: Re: Harvoni Side effects
Post by: mario555 on December 01, 2014, 09:05:12 pm
Most doctors I know (hepathologists) say exactly that; the liver can't feel pain! I would bet they most probably don't have Hep c... I've had pains "pinching" and sometimes "pulling hard" and it didn't come from anywhere. So it is not my imagination! Many Hep c sufferers will attest to that.
On another note, it's interesting to see someone who worries because of no pains and another one who worries 'because' of the pain!!  Being the first batch of patients on Harvoni, it's interesting to see everyone's experience
Title: Re: Harvoni Side effects
Post by: elizabethfaraone on December 01, 2014, 09:09:25 pm
Most doctors I know (hepathologists) say exactly that; the liver can't feel pain! I would bet they most probably don't have Hep c... I've had pains "pinching" and sometimes "pulling hard" and it didn't come from anywhere. So it is not my imagination! Many Hep c sufferers will attest to that.
On another note, it's interesting to see someone who worries because of no pains and another one who worries 'because' of the pain!!  Being the first batch of patients on Harvoni, it's interesting to see everyone's experience

Well that's strange for them to say.  The liver is an extremely richly innervated organ.  Why would they say something so stupid.  Punch someone in their liver, and they will feel A LOT of pain.  Read here:  http://www.ncbi.nlm.nih.gov/books/NBK53061/
Title: Re: Harvoni Side effects
Post by: mario555 on December 01, 2014, 09:28:43 pm
Real funny your "punch in the liver" and then I looked at the pictogram. Now it's even funnier!
On the serious side. What I don't get is their continued belief in the liver having no pains while they must be in contact with many liver sufferers who report pain. May be they mean the 'threshold of pain'!!
Title: Re: Harvoni Side effects
Post by: elizabethfaraone on December 01, 2014, 09:36:52 pm
Real funny your "punch in the liver" and then I looked at the pictogram. Now it's even funnier!
On the serious side. What I don't get is their continued belief in the liver having no pains while they must be in contact with many liver sufferers who report pain. May be they mean the 'threshold of pain'!!

I think doctors are just queens of denial.
Title: Re: Harvoni Side effects
Post by: Rubye on December 01, 2014, 11:01:02 pm
Interesting. I've had that "heaviness" at my liver but have been writing it off as gas. It's only been since I started s/o tx though.
Title: Re: Harvoni Side effects
Post by: Bucky on December 01, 2014, 11:06:05 pm
Most doctors I know (hepathologists) say exactly that; the liver can't feel pain! I would bet they most probably don't have Hep c... I've had pains "pinching" and sometimes "pulling hard" and it didn't come from anywhere. So it is not my imagination! Many Hep c sufferers will attest to that.
On another note, it's interesting to see someone who worries because of no pains and another one who worries 'because' of the pain!!  Being the first batch of patients on Harvoni, it's interesting to see everyone's experience

I felt like I was kicked by a horse when I had my biopsy. My liver felt something.
Bucky
Title: Re: Harvoni Side effects
Post by: jberlin on December 01, 2014, 11:13:30 pm
Anyone that had a liver biopsy before they became CT guided would say the liver has pain cells.  I had one in 1977 when I became jaundiced and it felt like a mule kick, then I had to lay on my side for 4 hours to make sure the bleeding stopped...   Lots of things have things have improved medically since then!  -jack
Title: Re: Harvoni Side effects
Post by: PaulG on December 01, 2014, 11:46:14 pm
Yes I had a liver biopsy like that years ago But the laying on my side was the worst part more then the pain from that huge needle.Never did that again
Title: Re: Harvoni Side effects
Post by: Bucky on December 01, 2014, 11:47:13 pm
Anyone that had a liver biopsy before they became CT guided would say the liver has pain cells.  I had one in 1977 when I became jaundiced and it felt like a mule kick, then I had to lay on my side for 4 hours to make sure the bleeding stopped...   Lots of things have things have improved medically since then!  -jack

The last one I had was US guided and I had IV sedation so I did not feel a lot. I still had to wait for three hours with a weighted blanket on the puncture site.
Bucky
Title: Re: Harvoni Side effects
Post by: art1951 on December 02, 2014, 08:55:51 am
UNDETECTED!!

Finally got my 4 weeks results.  They actually forgot to ask the lab to do the RNA tests and I had to remind them a week later so they are 6 weeks in.

AST           23/was 75
ALT           15/ was 93
HCV RNA, QUANTITATIVE REAL TIME PCR NOT DETECTED

I am still having some issues with blood pressure and headaches but my primary care is adjusting the medication and it is getting better.

-Art
Title: Re: Harvoni Side effects
Post by: badbradley on December 02, 2014, 09:05:16 am
Art         That's what we all love to see!! Happy Day! The 6 wk. draw always made more sense to me. I am skipping the VL check - waiting the 12 wks. for SVR12. Congratulations!!       Brad
Title: Re: Harvoni Side effects
Post by: jberlin on December 02, 2014, 09:11:56 am
Fantastic news Art!  Make sure you are drinking lots of water and keep marching toward being cured.  All of us are happy for you and eagerly await your next status update. -jack
Title: Re: Harvoni Side effects
Post by: Bucky on December 02, 2014, 09:21:47 am
Art,
Congratulations, this is very good news indeed!
Bucky

Title: Re: Harvoni Side effects
Post by: elizabethfaraone on December 02, 2014, 10:04:55 am
Congratulations, Art!
Title: Re: Harvoni Side effects
Post by: PaulG on December 02, 2014, 10:13:56 am
Congratulations !!!!!!!!!
Title: Re: Harvoni Side effects
Post by: fllazylady on December 02, 2014, 02:24:56 pm
Good news Art.. Going for my CBC/Platelets with differential that's the only blood work they ask for.at 4 wks. At 6 weeks I go for something different each time after..
Sounds like we are all on the cure train... Woo Hoo...
Happy Holidays...
Title: Re: Harvoni Side effects
Post by: Vicky on December 02, 2014, 04:27:36 pm
I thank you all for your input.  I am in the process of getting approved for Harvoni.  Anxious to get through it.  I spent 3 different years on combinations of interferon and other medications.  I was diagnosed in 1989, the medications never worked but make me horribly sick.  I ended up with cirrhosis and liver cancer.  Luckily 2-1/2 years ago I received a great liver and I'm doing very well, except for the hep c.  Anyone else post liver transplant?
Title: Re: Harvoni Side effects
Post by: fllazylady on December 03, 2014, 01:56:15 pm
Wow God Bless you. I'm sure it's been a hell of a ride..Hopefully Harvoni will save us all in this New Year.. Welcome and keep us posted.. I'm 4 weeks in..I am so grateful to see a cure in my lifetime
Title: Re: Harvoni Side effects
Post by: scared of meds on December 03, 2014, 03:11:03 pm
Hello Everyone,
My name is Margo and I was diagnosed with Hep C in 2010. I did not do the Interferon with the other drugs as I was terrified of the side effects.  My dr. had me signed up with a psych for depression and a dermatologist because of the rash I would get because of the meds.
I am now seeing a different person, she is a Nurse Practioner and all she does is treat Hep C patients.  She was very patient with me and my issues with strong drugs. Well... I just received my VL over 6 mil. So she is now applying with my insurance company to get approved for Harvoni.
I want to be rid of this disease but am terrified of the side effects. I guess I am writing to get some encouragement. Thanks

Title: Re: Harvoni Side effects
Post by: elizabethfaraone on December 03, 2014, 03:18:16 pm
Hello Everyone,
My name is Margo and I was diagnosed with Hep C in 2010. I did not do the Interferon with the other drugs as I was terrified of the side effects.  My dr. had me signed up with a psych for depression and a dermatologist because of the rash I would get because of the meds.
I am now seeing a different person, she is a Nurse Practioner and all she does is treat Hep C patients.  She was very patient with me and my issues with strong drugs. Well... I just received my VL over 6 mil. So she is now applying with my insurance company to get approved for Harvoni.
I want to be rid of this disease but am terrified of the side effects. I guess I am writing to get some encouragement. Thanks

Hi, Margo.  I was diagnosed in 2011 and initially resisted Interferon but was then convinced by my doctor to get treated with it.  Biggest mistake I ever made.  My symptoms were severe and I stopped immediately, but the side effects continued for three months.  I've waited for years for a safe and effective medicine, and I believe Harvoni is just that.  I started yesterday and am feeling tired and had stronger body aches than usual yesterday that subsided last night.  I'm not feeling side effects today.  I know many people who have used Sovaldi and have been successfully cured with no serious side effects.  So I encourage you to take Harvoni.  It has been three years since patients were first treated successfully with Sovaldi and I haven't heard any bad news about Sovaldi.
Title: Re: Harvoni Side effects
Post by: scared of meds on December 03, 2014, 03:26:52 pm
Does Solvaldi have to be taken with something else? I am just waiting as my paperwork was just submitted today to my insurance company for Harvoni. I probably will take it but I am afraid of the residual effects.
Title: Re: Harvoni Side effects
Post by: Lynn K on December 03, 2014, 03:37:37 pm
Hi

I treated 3 times with interferon based treatments was tough but survived. Unfortunately I was a null responder and there were no more treatments available for me I had developed cirrhosis and had no treatment options.

Finally Sovaldi and Olysio were approved separately and I was able to treat with them both off label for 12 weeks. I was undetectable at week 4 and stopped at 12 weeks felt fine the whole time. Unfortunately I did not achieve SVR 12 and relapsed 12 weeks after I stopped the meds. So now I am taking Harvoni I just started week 3 of 24 and don't feel really and different maybe had some flushing the first day or two. Maybe a very mild headache whether from meds or not who knows other than that nothing to report.

Good luck on treatment go kick some dragons butt!
Lynn
Title: Re: Harvoni Side effects
Post by: mario555 on December 03, 2014, 03:49:04 pm
I was treated twice with peg ifn and it was hell. Like Lynn, I'm 3 weeks in and have no side effects to write home about. Good luck and don't worry about it. For 90+% of the people it will put an end to the disease.
Title: Re: Harvoni Side effects
Post by: scared of meds on December 03, 2014, 04:22:02 pm
I can't tell you how much I appreciate your feed back.  I guess I feel in control if I am not putting anything too powerful into my body. So taking a powerful drug would make me out of control, BUT...I am going to kick some dragon butts. I am getting my courage up and going to take Harvoni, provided my insurance accepts it and then move on with my life. I appreciate all of you more than you know. I have to go now but will return.
Love to all,
Margo
Title: Re: Harvoni Side effects
Post by: elizabethfaraone on December 03, 2014, 04:41:35 pm
Margo, keep in mind I don't work so I can rest all day.  If I had to go to work, I wouldn't be able to tolerate this treatment.  I am very, very tired and when I do something like walk up two flights of stairs after I've been sitting for 15 minutes, I feel like I've walked six miles.  But this is NOTHING compared to the Interferon treatment  With Interferon, there is nothing I could do to escape the suffering.  With Harvoni, rest brings relief.
Title: Re: Harvoni Side effects
Post by: UndetectableC on December 03, 2014, 05:06:21 pm
I thank you all for your input.  I am in the process of getting approved for Harvoni.  Anxious to get through it.  I spent 3 different years on combinations of interferon and other medications.  I was diagnosed in 1989, the medications never worked but make me horribly sick.  I ended up with cirrhosis and liver cancer.  Luckily 2-1/2 years ago I received a great liver and I'm doing very well, except for the hep c.  Anyone else post liver transplant?

I'm not post transplant, but I wanted to wish you the fastest approval possible. Hope to read that you're in TX very soon!
Title: Re: Harvoni Side effects
Post by: Doluska on December 03, 2014, 05:36:00 pm
Don't think twice! Start now! I am after cancer treatment, 2 heart surgerys and was waiting for those med's 25 years!! We are so lucky to live at this time! More then this, I was fighting two months to get Sovaldi/Olysio, in Canada it is a whole other story. I wouldn't survive Interferon, no chance. I wish Harvoni was avalible when I started, but even now, I am happy, becouse Harvoni is my plan B. Side effects are manageable. Believe me, if I with my hear,depression and fibrosis 3-4 can take it, everybody should try and be successful! Good luck!
,
Title: Re: Harvoni Side effects
Post by: elizabethfaraone on December 03, 2014, 05:39:38 pm
Don't think twice! Start now! I am after cancer treatment, 2 heart surgerys and was waiting for those med's 25 years!! We are so lucky to live at this time! More then this, I was fighting two months to get Sovaldi/Olysio, in Canada it is a whole other story. I wouldn't survive Interferon, no chance. I wish Harvoni was avalible when I started, but even now, I am happy, becouse Harvoni is my plan B. Side effects are manageable. Believe me, if I with my hear,depression and fibrosis 3-4 can take it, everybody should try and be successful! Good luck!
,

I agree, Doluska.  And I've been paying attention to what's goin' down in Canada.  I was very upset by it.  I downloaded this video and posted it on my YouTube channel:  https://www.youtube.com/watch?v=MZgX_Nmf5NA
Title: Re: Harvoni Side effects
Post by: Doluska on December 03, 2014, 08:11:19 pm
Thank you, Elisabeth ! It was educating, thak's God, I am not in Alberta! This doctor sounds very cinical!! Unfortunately, more than half of them are like this. Working in a health care I saw a thousands of  doctors who doesn't care and only very little who really, really thinks about the patents, and compattionate. Please, aim for the best, and do not take less than this. D.
P.s. Interesting, that a lot of them thinks that they are God. Ups! Big mistake! They gonna die too!
Title: Re: Harvoni Side effects
Post by: Lynn K on December 03, 2014, 09:40:11 pm
Also not post transplant but did mean to mention I am a 56 year female and work 40 hours plus occasional overtime on second shift in a machine shop.

Still going strong.

Lynn
Title: Re: Harvoni Side effects
Post by: UndetectableC on December 03, 2014, 10:43:13 pm
I'm only on my second week with Harvoni and I can't sleep!!! I tried taking the pill at 9 pm before going to bed and I get a kind of ''heat puff'' up to 2-4 hours after taking the medication. I can't fall asleep while ''puffing''. I then tried to take the medication earlier (6 pm) and now I just can't sleep!
Anyone of you who encountered this side effect at the beginning of treatment? Does it go down in intensity or does it increases?
I haven't experienced 'brain fog' or tiredness (after 2 weeks) but I'm just buzzed out and can't seem to have a full night of respite. PLease give me your tricks if you have any because I'm on a 24 weeks treatment and I don't really want to wait 22 more weeks to sleep!
Some suggestions:
Massage before sleeping, if possible. Hot bath or shower before bed. Warm milk or herbal tea. Read a boring book or watch a droning documentary. Deep breathing that simulates sleep breathing helps calm my body down for sleep. If you have a partner that can sleep, mimic their breathing.

I drink loads of coffee which probably doesn't help w/ sleeping, but I have had very few headaches. I'm on week 5 now. I've gotten the 'heat puff' and clammy skin (I call them flushes because they remind me of hot flashes minus the sweats) since about the 3rd day on Harvoni- always after I take it, and still get it. I get random flushes, too.
I also had a burst of energy at first. By week 3 I was irritable and spacy- probably from fatigue. In week 4 I crashed and got more sleep. I've taken a few naps, too since then. This has been the best week, so far for SEs.  Maybe I'm getting used to it. The worst of it is hopefully behind me.
Hope this helps. Wishing you a speedy treatment! May the weeks fly by!
Title: Re: Harvoni Side effects
Post by: goodbyehepc on December 03, 2014, 11:08:14 pm
Hello
I'm happy to report NO detection of virus after four weeks of Harvoni. Blood results are stellar with everything normal except slightly high is Lymphocytes. Has anyone experienced the same?

Also my Iron is also high which is strange but maybe something I ate that week? 


Thanks
GHC
Title: Re: Harvoni Side effects
Post by: dragonslayer on December 03, 2014, 11:50:41 pm
Its interesting to read how many people here seem to be having side effects from Harvoni compared to those in the trials which show that those experiencing side effects were in the great minority.

To wit, from the 12 wk cohort, side effects are as follows.  Out of 539 participants:

Fatigue                13%
Headache             14%
Nausea                 7%
Diarrhea               3%
Insomnia              5%
Title: Re: Harvoni Side effects
Post by: Lynn K on December 04, 2014, 12:01:31 am
Hi dragonslayer

Well if you consider the name of this post Harvoni side effects everyone is coming to this to post their side effects so it would be a skewed sampling not exactly a scientific survey to say the least.

I am on day 16 with nothing much to report just a couple of mild headaches which could have been sides of just a normal headache and I had some facial redness the first day or two.

So I am reporting in as no significant side effects.

Best to all the Warriors out there
Title: Re: Harvoni Side effects
Post by: dragonslayer on December 04, 2014, 12:33:46 am
Right, Lynn... The posters in This thread are not exactly an unbiased sample!  Ive been on Harvoni for only 7 days and have experienced a few headaches and insomnia.. Guess what... I experience occasional headaches with or without Harvoni.. And insomnia?   Have had that for years.... Plus which, on my second day of Harvoni, I started coming down with a pretty bad cold from which Im starting to recover which created a whole load of other possible Harvoni symptoms.. Hmmm... Which belonged to the Harvoni? which belonged to the cold?   Im going with the cold as the major contributor.  Hopefully, when it dries up, so will its attendant symptoms, leaving me with only the occasional headache and insomnia.. Which I had all along.. I used to think it was the HCV that was causing it... Who knows. I suspect Im just a lousy sleeper who gets headaches.
Title: Re: Harvoni Side effects
Post by: UndetectableC on December 04, 2014, 12:59:24 am
Its interesting to read how many people here seem to be having side effects from Harvoni compared to those in the trials which show that those experiencing side effects were in the great minority.

To wit, from the 12 wk cohort, side effects are as follows.  Out of 539 participants:

Fatigue                13%
Headache             14%
Nausea                 7%
Diarrhea               3%
Insomnia              5%

Those are handpicked patients, and not very many of them.  A good many of them have been though much harsher treatments. I expect those numbers to change as more people are treated. It would be interesting to see the % of SE's reported by TX naive vs pts with previous treatment.
I agree that colds, aches and such are an everyday part of life. However, I've now lost 10lbs without trying very hard. Others have reported weight loss, too.  That's not listed up there.  If you look at the Sovaldi side effects, some of them are being reported in this thread which makes sense since Sovaldi is in Harvoni. Just my 2cents.
Title: Re: Harvoni Side effects
Post by: Lynn K on December 04, 2014, 02:31:49 am
Sure I agree and maybe that is why nothing much bothers me I have never been sensitive to meds and no known allergies. Plus I did multiple attempts with interferon so I guess I am fortunate and battle scarred veteran.

I also didn't have any sides worth noting while I was taking Sov Oly for 12 weeks from March to June.

Guess I am just a tough old bird. Also I wish I could lose 10 pounds actually 20 would be perfect I will send them your way. Just kidding sorry it is tough on you like I said guess I am fortunate not to have sides.

Lynn
Title: Re: Harvoni Side effects
Post by: elizabethfaraone on December 04, 2014, 08:28:15 am
I can feel how strong this medicine is and it has to be to kill this virus.  Although I am doing well on the third day, I am much more tired and achy than usual and I feel disconcerted and more foggy brained.  But the real tell is when I look in the mirror.  My face is totally drained of color and I have very dark circles under my eyes.  All of that said, I love this medicine and am so happy to finally be treated with it.  I came to this forum on side effects before I started the medicine so that I could post the side effects I might experience.  If every patient honestly reported their side effects, we would have a better picture and be able to prepare patients to be able to deal with the possible side effects.  From day one, I've taken 400 mg of Tylenol along with the Harvoni (I normally don't take pain killers, but since I was having pain BEFORE I started the Tylenol, I figured I should start taking pain killers).  I've avoided pain killers because I understand the stress it puts on the liver, but while I'm taking this medicine and feeling achy, I will continue to use the Tylenol.
Title: Re: Harvoni Side effects
Post by: fllazylady on December 04, 2014, 08:40:31 am
We all are having some sides but nothing we can't handle to be free of HepC...
For those having trouble sleeping switch your dose time to AM.. I love the energy I am getting from the Harvoni...why take it at night???? I welcome this new found energy..
I'm doing more now than I did before in the daytime.. Use it to your advantage..
Sending you all Light n Love this Holiday Season..
Title: Re: Harvoni Side effects
Post by: mario555 on December 04, 2014, 08:48:58 am
I would guess that if all the Harvoni users would report their side effects, we might not be a very representative group because most of us are battle hardened and we're most probably much more in tune with our bodies and side effects than the regular population.
It is hard to tell if some of my side effects are Harvoni related or just good old shitty days....  What is coming out though is that Brain fog and headaches seem to be common.  Lack of sleep plagues us but most are experiencing bouts of increased energy.
It's too bad Hep Mag doesn't have the funds needed to be able to capture our side effects and lab results (and eventually our cured rates) and put those in a worksheet. We'd then have actual life statistics that could help future patients evaluate what's really happening with the medication.
Title: Re: Harvoni Side effects
Post by: goodbyehepc on December 04, 2014, 09:05:27 am
I can feel how strong this medicine is and it has to be to kill this virus.  Although I am doing well on the third day, I am much more tired and achy than usual and I feel disconcerted and more foggy brained.  But the real tell is when I look in the mirror.  My face is totally drained of color and I have very dark circles under my eyes.  All of that said, I love this medicine and am so happy to finally be treated with it.  I came to this forum on side effects before I started the medicine so that I could post the side effects I might experience.  If every patient honestly reported their side effects, we would have a better picture and be able to prepare patients to be able to deal with the possible side effects.  From day one, I've taken 400 mg of Tylenol along with the Harvoni (I normally don't take pain killers, but since I was having pain BEFORE I started the Tylenol, I figured I should start taking pain killers).  I've avoided pain killers because I understand the stress it puts on the liver, but while I'm taking this medicine and feeling achy, I will continue to use the Tylenol.

It gets better after a week. Trust me those side effects are just your body processing the medicine. YOu will slowly get jolts of energy and then the side effects change. I too have gotten circles but I am undetected of the virus since week four. And I still take it and I don't feel like I"m taking anything.
Title: Re: Harvoni Side effects
Post by: art1951 on December 04, 2014, 09:07:00 am
I am going to take fllxlady's suggestion and move my dosage to the morning.  I have already moved my blood pressure medications to the morning and it seems to work better. 
I am on week 7 and am feeling much better and starting to exercise again.  I do have lots of energy in the morning but start getting fatigued around 2:00 on.  Hopefully moving the Harvoni to the morning will also resolve that.
I am looking forward to the possibility of weight loss and need to drop 20 pounds or so.
Thanks for all the encouragement on this site.  I started this thread as a newbie because most of the apprehension that I was having was not knowing what Harvoni would do to my life and was looking for a good place to go for reference.  I wanted to share my experience so that others would have something to refer to.  It has been a huge help to me to hear others stories good and bad.  I don't have anyone outside this forum that is actually going through the same problems and they don't understand the depths of the issues that you are going through.

Thanks for listening,
Art



Title: Re: Harvoni Side effects
Post by: goodbyehepc on December 04, 2014, 09:13:28 am
I am going to take fllxlady's suggestion and move my dosage to the morning.  I have already moved my blood pressure medications to the morning and it seems to work better. 
I am on week 7 and am feeling much better and starting to exercise again.  I do have lots of energy in the morning but start getting fatigued around 2:00 on.  Hopefully moving the Harvoni to the morning will also resolve that.
I am looking forward to the possibility of weight loss and need to drop 20 pounds or so.
Thanks for all the encouragement on this site.  I started this thread as a newbie because most of the apprehension that I was having was not knowing what Harvoni would do to my life and was looking for a good place to go for reference.  I wanted to share my experience so that others would have something to refer to.  It has been a huge help to me to hear others stories good and bad.  I don't have anyone outside this forum that is actually going through the same problems and they don't understand the depths of the issues that you are going through.

Thanks for listening,
Art

Hey Art,
You know I was going to move mine to morning, my plan was to take it an hour or so earlier each day but then my body got used to it and now I don't really have any side effects. That 2PM nap was usual for me for so many years but now I get tired at the end of the day like 7 PM I need to lie down. I think it will get better. Right now I'm week five and was undetected on week four. I do rest of December and then January and will be done in February 1st! I'm glad to hear you will start exercising you will actually feel better as a result and you may even find it easier than ever on the treatment. Good luck
GHC
Title: Re: Harvoni Side effects
Post by: art1951 on December 04, 2014, 09:40:20 am
GHC,
If I had the ability to take nap at 2:00 I would be doing fine.  I seem to recover quickly with a little rest.  I think I can manage this and it is getting better each week.  I work from 7 am till 5:30 each day.  I had thought about going home at lunchtime and resting but no longer feel it is necessary.

I do have additional energy now and am not sure if that is just because I am returning to normal or a side benefit of the Harvoni.  It does feel like my body is no longer having to fight the hep-c and I seem to be healing more quickly from infections etc.

Thanks,
Art
Title: Re: Harvoni Side effects
Post by: elizabethfaraone on December 04, 2014, 09:45:57 am
GHC,
If I had the ability to take nap at 2:00 I would be doing fine.  I seem to recover quickly with a little rest.  I think I can manage this and it is getting better each week.  I work from 7 am till 5:30 each day.  I had thought about going home at lunchtime and resting but no longer feel it is necessary.

I do have additional energy now and am not sure if that is just because I am returning to normal or a side benefit of the Harvoni.  It does feel like my body is no longer having to fight the hep-c and I seem to be healing more quickly from infections etc.

Thanks,
Art

On day 2 of taking Harvoni, I noticed that the many tiny, hard "pimples" that I've had on my torso and arms since February are disappearing quickly.  I suspected they were due to the advancing of my Hepatitis C and I guess I was correct.
Title: Re: Harvoni Side effects
Post by: art1951 on December 04, 2014, 11:41:52 am
Hello
I'm happy to report NO detection of virus after four weeks of Harvoni. Blood results are stellar with everything normal except slightly high is Lymphocytes. Has anyone experienced the same?

Also my Iron is also high which is strange but maybe something I ate that week? 


Thanks
GHC
GHC,

Great news on being undetected!!!
My 4 week tests showed
    ABSOLUTE LYMPHOCYTES 2075
    LYMPHOCYTES 24.7
Overall my blood work looked fine, I did not see a test for iron.

Thanks,
Art

Title: Re: Harvoni Side effects
Post by: John3333 on December 04, 2014, 12:08:30 pm
Hi guys. I am new to the forum but have been reading it for quite some time. I have been approved for Harvoni and will be getting my meds next Friday the 12th. I have CVS Caremark but my doctor wanted the meds shipped to him instead of directly to me. I am excited because I didn't think I would be approved.

I was diagnosed with Hep C in 2001, and i suspect I contracted it in or around 1990. I am genotype 1a.  Back in 2002 I had a liver biopsy where I was stage 1 with a Knodell score of 6 which indicated mild inflammation. I did the 48 weeks of tx hell to no avail. My liver enzymes are moderately elevated, I have no symptoms other than occasional fatigue. This could be due to the hep C or having a 4 year old and 6 year old at my age, (50) plus a very stressful job, LOL. I am physically fit and try to eat right, and from 1995 until present I have not used alcohol.

I want you guys to know that the information you post helps a lot of people, even if they are not active in the forum. I learned a great deal from you guys and Lucinda, and i am glad and grateful that you guys are out there posting your experiences. I am reading the different reactions that everyone has had to the Harvoni, and I figure that if I could make it through the 48 weeks of tx hell, I should have no problem with 12 weeks of this stuff. My only fear is irritability being I have small children.

Thanks to all and keep fighting!!!
Title: Re: Harvoni Side effects
Post by: Galeygirl on December 04, 2014, 02:04:16 pm
Hi everyone. I've been on Harvoni for 5 weeks. My liver enzymes are normal as of 4 weeks of treatment.  I am 1a with no cirrosis and minimal fibrosis. I've had all the listed side effects of Harvoni and then some for the whole time.  Although they note diarrhea, they don't mention the cramping that accompanies it. And along with the nausea comes vomiting. I saw a post here from someone that weighs 100 pounds and has all the side effects too. I also am around 100 pounds, so I'd be curious to know the weights of people who have the worst side effects. I've also had my gall bladder removed (thank you riba/peg). Even though the percentages of people with side effects are low, it is still 3-14 people out of 100... Some of us are just lucky that way!! I will say that it is nothing compared to treatment with ribavirin and interferon so I refuse to complain! Just stating the facts ;)
Title: Re: Harvoni Side effects
Post by: John3333 on December 04, 2014, 02:21:48 pm
Hi everyone. I've been on Harvoni for 5 weeks. My liver enzymes are normal as of 4 weeks of treatment.  I am 1a with no cirrosis and minimal fibrosis. I've had all the listed side effects of Harvoni and then some for the whole time.  Although they note diarrhea, they don't mention the cramping that accompanies it. And along with the nausea comes vomiting. I saw a post here from someone that weighs 100 pounds and has all the side effects too. I also am around 100 pounds, so I'd be curious to know the weights of people who have the worst side effects. I've also had my gall bladder removed (thank you riba/peg). Even though the percentages of people with side effects are low, it is still 3-14 people out of 100... Some of us are just lucky that way!! I will say that it is nothing compared to treatment with ribavirin and interferon so I refuse to complain! Just stating the facts ;)




Hi Galeygirl.

I am home today with my sick daughter, so I have been reading all the threads. I am sorry you are having so many side effects. I am a little nervous myself about starting the meds. Do you get irritability? That's my biggest concern, I don't want to be going off on the kids LOL. Remember, you don't have to much longer to go, so hang in there! Think about how bad the ribs/peg was, after that, you can survive anything for a couple more weeks. Good Luck!
Title: Re: Harvoni Side effects
Post by: Galeygirl on December 04, 2014, 03:46:21 pm
Not anymore irritable than just what I was from the Hep c!!
Title: Re: Harvoni Side effects
Post by: Rubye on December 04, 2014, 06:24:17 pm
GaleyGirl, trust me, bad side effects are not limited to small people. I am big at 5'9" and 180 lbs and have had a terrible time on the S/O. I know you're on Harvoni, but people were saying the same thing about S/O and the bad side effects are because a person is small. I know others who are not small and some have had bad sides. It does seem to me though that women have more sides than men. I hope you feel better soon.
Title: Re: Harvoni Side effects
Post by: UndetectableC on December 04, 2014, 06:34:19 pm
Hi guys. I am new to the forum but have been reading it for quite some time. I have been approved for Harvoni and will be getting my meds next Friday the 12th. I have CVS Caremark but my doctor wanted the meds shipped to him instead of directly to me. I am excited because I didn't think I would be approved.

I was diagnosed with Hep C in 2001, and i suspect I contracted it in or around 1990. I am genotype 1a.  Back in 2002 I had a liver biopsy where I was stage 1 with a Knodell score of 6 which indicated mild inflammation. I did the 48 weeks of tx hell to no avail. My liver enzymes are moderately elevated, I have no symptoms other than occasional fatigue. This could be due to the hep C or having a 4 year old and 6 year old at my age, (50) plus a very stressful job, LOL. I am physically fit and try to eat right, and from 1995 until present I have not used alcohol.

I want you guys to know that the information you post helps a lot of people, even if they are not active in the forum. I learned a great deal from you guys and Lucinda, and i am glad and grateful that you guys are out there posting your experiences. I am reading the different reactions that everyone has had to the Harvoni, and I figure that if I could make it through the 48 weeks of tx hell, I should have no problem with 12 weeks of this stuff. My only fear is irritability being I have small children.

Thanks to all and keep fighting!!!

I think the irritability is from the insomnia. Maybe napping with them will help?
Title: Re: Harvoni Side effects
Post by: sunrise on December 04, 2014, 07:45:03 pm
Welcome to the forum. Wisbing you UD for good after tx. My side effects witbS/O has been anxiety which I tried to fight but gave in on my 7th week with klonapam. I do take 5 mg ambien at bedtime as I have to sleep so I can run my biz in the morning.  Other that that, oh lets not forget weight gain. Ive gained 35 lbs since tx started! Other than tbat its been pretty good. Best of luck on your journey.....17 days to go!
Title: Re: Harvoni Side effects
Post by: scared of meds on December 05, 2014, 12:07:16 pm
Ok I have been approved by my insurance company to receive Harvoni. I am so scared as I have always been into holistic health. I do want to rid my body of this disease but I am afraid of the residual effects of the medication. I hope to hear from someone as I am afraid of not being in control and that in itself is an oxymoron. I hope you are all doing well.
Thanks,
Margo
Title: Re: Harvoni Side effects
Post by: Galeygirl on December 05, 2014, 12:14:38 pm
There are some side effects with Harvoni, but nothing that can't be handled. It is nothing like the prior treatments with Interferon.
Title: Re: Harvoni Side effects
Post by: scared of meds on December 05, 2014, 12:20:37 pm
Thanks, I appreciate your encouragement. I am sure I will be ok, it is just a bit unnerving for me, but at the same time I hear of people having more energy shortly after taking Harvoni so I am going for it.
Thanks again,
Margo
Title: Re: Harvoni Side effects
Post by: sunrise on December 05, 2014, 02:34:49 pm
Hi Mario
      Hope you get thru tx easily. Find out from your doc  what supplements you can take. You have to be careful with interactions so definitely ask. I have to be really careful as Olysio has so many. Ypu will be fine as harvoni is the latest and greatest of txs. I had to try s/o first and if I relapse I will definitely do harvoni. It beats keeping this terrible virus in my body hands down! Best wishes
Title: Re: Harvoni Side effects
Post by: sunrise on December 05, 2014, 02:35:45 pm
Sorry typo I meant Margo ::)
Title: Re: Harvoni Side effects
Post by: UndetectableC on December 05, 2014, 04:01:25 pm
Ok I have been approved by my insurance company to receive Harvoni. I am so scared as I have always been into holistic health. I do want to rid my body of this disease but I am afraid of the residual effects of the medication. I hope to hear from someone as I am afraid of not being in control and that in itself is an oxymoron. I hope you are all doing well.
Thanks,
Margo
Hi Margo
I tend towards the holistic approach myself and rarely take any meds unless I absolutely must.
There's never been a shorter course of treatment available than right now. It acts so quickly that many people report feeling better within the first few weeks. People are breezing through treatment with minimal side effects and you will, too. :)
Title: Re: Harvoni Side effects
Post by: nicole_1234 on December 05, 2014, 06:58:39 pm
Hi. I'm new to the forum. On day 3 of Harvoni. I am non cirrhotic, treatment experienced (48 weeks of Peg/Interferon in 2007) so my TX is 12 weeks of Harvoni.

I have no idea what my viral load is and my last Liver Function Panel was in September showing ALP 57 ALT 55. I've probably had the virus for about 15 years.

From the looks of this feed it seems many are still trying to get the drug so I am very grateful to have gotten it and to be able to share my side effects. They are nothing compared to the interferon/ribavirin evil duo and just knowing it's 12 weeks instead of 48 is so much easier to tolerate (they asked me to go 72 weeks on interferon because I was a slow responder and I just couldn't).

However, I am experiencing an upset stomach, not nausea or cramping, just rumbling discomfort almost as if I hadn't eaten anything in 24 hours or something. I take the pill at noon and the stomach problems begin after dinner. I haven't slept well the first two nights. Partially because of my stomach and partially because I feel very wired and anxious. I am trying to stay really positive and also take it easy this first few days. I'm sure my mind and body are getting used to it and will calm down and settle in soon. This feels like an easy choice and one I am glad I have been able to access this drug. Praying it works.

Despite that, these side effects are definitely tolerable so I hope everyone here that wants it gets to have it. And whether it works for me or not, I will advocate for others to get it in any way I can. It seems very unfair that they have made this so expensive.
Title: Re: Harvoni Side effects
Post by: Bucky on December 05, 2014, 07:34:12 pm
Hi. I'm new to the forum. On day 3 of Harvoni. I am non cirrhotic, treatment experienced (48 weeks of Peg/Interferon in 2007) so my TX is 12 weeks of Harvoni.

I have no idea what my viral load is and my last Liver Function Panel was in September showing ALP 57 ALT 55. I've probably had the virus for about 15 years.

From the looks of this feed it seems many are still trying to get the drug so I am very grateful to have gotten it and to be able to share my side effects. They are nothing compared to the interferon/ribavirin evil duo and just knowing it's 12 weeks instead of 48 is so much easier to tolerate (they asked me to go 72 weeks on interferon because I was a slow responder and I just couldn't).

However, I am experiencing an upset stomach, not nausea or cramping, just rumbling discomfort almost as if I hadn't eaten anything in 24 hours or something. I take the pill at noon and the stomach problems begin after dinner. I haven't slept well the first two nights. Partially because of my stomach and partially because I feel very wired and anxious. I am trying to stay really positive and also take it easy this first few days. I'm sure my mind and body are getting used to it and will calm down and settle in soon. This feels like an easy choice and one I am glad I have been able to access this drug. Praying it works.

Despite that, these side effects are definitely tolerable so I hope everyone here that wants it gets to have it. And whether it works for me or not, I will advocate for others to get it in any way I can. It seems very unfair that they have made this so expensive.

Hi Nicole,
It could take a week or so for your stomach to settle down. I was treated with S&O and snacked all day on healthy liver friendly foods. I also took my meds with food and don't forget water, water, water. This quelled the digestive problems that I was having.
Bucky

 
Title: Re: Harvoni Side effects
Post by: scared of meds on December 05, 2014, 11:19:48 pm
Thanks Sunrise for your reply. I will probably start Tuesday. I am going to take the plunge and hope and pray for the best. I can not tell you how much I appreciate the support of this forum.
Thanks again,
Margo
Title: Re: Harvoni Side effects
Post by: sunrise on December 05, 2014, 11:53:16 pm
Margo you're going to do so good. Try not to be scared. These nes medications are really well tolerated for most. Especially since you are not cirrhotic. I know that with s/o tx is is very important to eat with meds. The nurse for Gilead in class told us with sovaldi it didn't matter. Not the case with olysio, it is VERY important to eat. I have never expwrienced nausea nor diarrhea with thea meds. I alwaus take mine around 5 or 6 pm with a meal. Keep the faith.Margo. Courage is not lack of fear, it is the strength we have inspite of fear. Go slay this dragon Margo!
Title: Re: Harvoni Side effects
Post by: gea on December 06, 2014, 06:58:51 am
Day 20 on Harvoni and I am happy to report that I really don't have ANY side effects !   When I read some of your posts, I think, "oh yeah"....   Agitation perhaps more than normal, feel cold or hot more than usual.... runny nose?  Is that one here?   But that could just be the lovely weather we are having!  I still seem to sleep normally and no headaches, but then, I have always been a lucky one and never experienced headaches in my life....   This medicine is SWEET !   Sorry for all of you that are experiencing side effects, hope twelve weeks goes quickly for you!  SVR is wished to all for Christmas!   :-)
Title: Re: Harvoni Side effects
Post by: BattleTheBeast on December 06, 2014, 07:11:50 am
Gea,

That's awesome news and I hope I am as lucky as you have been when I start Harvoni, my body sure didn't like the Olysio!!

Hope you remain side free and kill the beast for good within!!

~Mel~
Title: Re: Harvoni Side effects
Post by: gea on December 06, 2014, 07:45:38 am
Thanks Mel !   From what I have read about your encounter with Olysio, you are gonna LOVE  Harvoni !    It's all good !
G
Title: Re: Harvoni Side effects
Post by: BattleTheBeast on December 06, 2014, 07:54:17 am
Crazy me has been up all night again, now I'm debating if I should hold off on the S/O and wait for the Harvoni to arrive.... Btw I am at exactly 8 weeks on S/O as of yesterday and have brand new bottles sitting here. I really don't want to open them in the hope that they can go to someone less fortunate, not everyone has the insurance I do and I'm actually very fortunate.


~Mel~
Title: Re: Harvoni Side effects
Post by: gea on December 06, 2014, 08:03:40 am
Mel, you sound like me with what I call "survivor's guilt"....   I was upset that my specialty pharmacy had me approved for the $5 co-pay !    I actually WANTED to pay my normal co-pay for Harvoni !   My heart bleeds for those on this forum that have to fight for the medicine, have gone thru years of treatment that was so difficult, have experienced relapse on lesser drugs....   But, as someone well put it, it is not a competition, it's an experience for each of us...   And some have an experience better than others, but hopefully will still all get to the same end result... SVR !   
Title: Re: Harvoni Side effects
Post by: icantwait on December 06, 2014, 08:46:02 am
Hi All, I am another one that just got the approval FAX for Harvoni from Express Scripts after the usual run around and countless phone calls. I understand the huge economic issue that the price of the drug is causing and I am thankful to get the approval. I will feel better when it is in my hands next week. I have had the disease for over 30 years along with the chronic disease of severe alcoholism. I have been sober for three years and hoped I had dodged a self inflicted bullet. I bounced back from viral loads literally off the chart, horrible skin, having two TIA's(scary losing all language comprehension), Porphyria Cutanea Tarda(PCT) and generally poor health from drinking two liters of vodka a day for decades. I never pursued any treatment for my hep C as I did not want to take away resources from those that needed them when I was still drinking. About 6 months ago, at 58, the hep C started taking off. I now have spider veins, edema in the legs, red palms, nausea and fatigue. I am F3, VL 3.1 Million and my macroglobulin is 493(thick blood). I am keeping my fingers crossed and hope that I will not have many side effects from the medication. It probably won't be any worse than the hangovers I had every morning for years. I will accept what ever happens and today, I am grateful for another day of life and what it will bring. Thanks to all for sharing you experiences and hopes here.
Title: Re: Harvoni Side effects
Post by: BattleTheBeast on December 06, 2014, 09:02:32 am
Icantwait,

Welcome and congratulations on your sobriety! I hope your road to Undetected is as easy as possible.

Your new life is just beginning!

~Mel~
Title: Re: Harvoni Side effects
Post by: mario555 on December 06, 2014, 09:33:04 am
Welcome to you ''Icantwait''. Count yourself lucky that you took action before it was too late! You sure ran yourself hard for all those years (many of us can relate to that...) but you now have Harvoni which should make you feel a bit better in the days following your first pill!!! Don't even worry about side effects because most of us have been through Peginterferon and Riba and that was hell... This is why we are a bit scared about this new treatment.  Most of us are in a state where medication can only improve us, the alternative being not so rosy.  We're born in perfect timing because of all the new advances with Hep C.  So, good luck and continue to stay away from your old buddies. Don't forget; People, Places and Things!!! (the ones who went through AA or NA will know what this is about...)
Title: Re: Harvoni Side effects
Post by: John3333 on December 06, 2014, 10:36:37 am
gea, I feel the same way. I figured I would get denied and I was ready to fight, but I was approved with a 5 dollar co-pay as well. I was thrilled but I felt guilty also. It's so unfair that some can get the meds but others can't.  I get the meds this coming Friday as they are being shipped to my doctor. I think I am going to take flazylady's advice and take the pill in the morning when I get up.

ican'twait, I wish you all the luck in the world! Take it one day at a time this medication is going to save your life.
Title: Re: Harvoni Side effects
Post by: fuzzy72 on December 06, 2014, 10:53:18 am
Hello,  I am newly diagnosed and will start Harvoni today. I am a 54 yr old female, RN for 28 years, worked in critical care. Not sure but believe I may have contracted this disease in the 80's from a needle stick. Anyway, I have cryoglobunemia, lichen planus, and biopsy shows grade 2 stage 4.  Viral load six million, genotype 1. Does anyone know if the cure rates are affected by the cryo? I find very little info on that.
Title: Re: Harvoni Side effects
Post by: nicole_1234 on December 06, 2014, 11:59:30 am
Day 4 on Harvoni and last night I finally slept and didn't wake up with an awful headache. Before bed I gave my self a 20 min "abyanga" self massage with warm sesame oil, it's an ayurvedic practice I highly recommend. Then I took a hot bath. I also drank a ton of water yesterday. Really helped with everything and I feel rejuvenated. Also I have been reading that for some the body adjusts after a couple days so perhaps it's that as well. Feeling less anxious today as well.
Title: Re: Harvoni Side effects
Post by: BattleTheBeast on December 06, 2014, 12:10:04 pm
Day 4 on Harvoni and last night I finally slept and didn't wake up with an awful headache. Before bed I gave my self a 20 min "abyanga" self massage with warm sesame oil, it's an ayurvedic practice I highly recommend. Then I took a hot bath. I also drank a ton of water yesterday. Really helped with everything and I feel rejuvenated. Also I have been reading that for some the body adjusts after a couple days so perhaps it's that as well. Feeling less anxious today as well.

That's so great Nicole! I am going to Google your abyanga message you mentioned. I love essential oils and they help to keep me a little calmer when I feel like falling apart. So glad you are adjusting so quickly!

Mel
Title: Re: Harvoni Side effects
Post by: nicole_1234 on December 06, 2014, 12:43:39 pm
That's so great Nicole! I am going to Google your abyanga message you mentioned. I love essential oils and they help to keep me a little calmer when I feel like falling apart. So glad you are adjusting so quickly!

Mel

Yes Mel, check it out. http://www.chopra.com/ccl/the-benefits-of-ayurveda-self-massage-abhyanga And thank you!
Title: Re: Harvoni Side effects
Post by: Doluska on December 06, 2014, 02:07:29 pm
Hi Fuzzy! Welcome to the RN's hepc club. I am 56 y.o. And live in Canada. Practiced nursing in 3 country's, glad that I am in Canada, but here it is not so easy to get to new med's. I am on s/o+ RIBA for 12 weeks. I'd've felt better if I could have it for 24 weeks, but nobody going to pay it here, health Canada didn't approve it. My hope for Harvoni for 12 weeks to continue and kill the virus forever, but I not going to be worried about it now. Good luck for your treatment, and ask Lucinda if you have any concerns, she is a grate record and very supportive. D.
Title: Re: Harvoni Side effects
Post by: gea on December 06, 2014, 02:22:32 pm
@ John3333,  I take mine (day 20 now) early in the morning, with about 16 ounces of water, something light to eat, and my coffee.  Then I continue to hit the water throughout the day, probably consuming about 40 ounces.   I thought perhaps if it were going to cause insomnia, it would not be as likely taking it early in the day ???   I have, as previously talked about, had no side effects, although, I believe Linda states that her headaches began at week four.....  fingers crossed !
G
Title: Re: Harvoni Side effects
Post by: mario555 on December 06, 2014, 02:52:54 pm
I would not think the cryobulemeia (ouf... Not sure of the spelling..) should not affect the cure rate with Harvoni because that disease is caused by hep c in many cases. Actually I would guess taking Harvoni will "improve" that problem. I read (Wikipedia) that 35 % of hep c sufferers have that problem. So good luck and please let me know if you find that symptom has improved after 1 full week of Harvoni.
Title: Re: Harvoni Side effects
Post by: John3333 on December 06, 2014, 08:08:46 pm
@gea, thanks for the information. The people that post on here, I don't think they know how much it has helped people like me who are getting ready to follow their path. It's good to know what others have experienced. Glad you have no sides.
Title: Re: Harvoni Side effects
Post by: fuzzy72 on December 07, 2014, 09:26:28 pm
Day 2 of Harvoni,  I take it early and drink water all day. So far so good. Keeping a positive attitude as best I can.  I do believe it helps. My husband is also positive but no extra hepatic complications.  Hopefully,  they will approve him to start in January.  He is retired now but was a RRT. We've got too much living to do to let this win!
Title: Re: Harvoni Side effects
Post by: sunrise on December 07, 2014, 09:34:37 pm
You will be fine fuzzy.  Im on sovaldi olysio combo with minor side effects.  You will coast thru it. Harvoni from what I'm reading is really amiracle. Best of luck. it sounds like you're off to a good start. I have 13 more days on my 3 month treatment. Wish me luck I hope for undetected forever...enjoy your time enjoy your holiday best wishes sunrise
Title: Re: Harvoni Side effects
Post by: nicole_1234 on December 07, 2014, 09:37:03 pm
Day 5 into Harvoni. I had a horrible anxiety attack last night accompanied by lots of uncontrollable crying. I do have a history with anxiety but I haven't had an attack like that in over 2 years so it felt related to the chemicals. Used to get them a lot on the peg/interferon treatment and for years after off and on. Since then yoga and meditation has helped a lot. But at this point I never know what's from the hepc, the treatment or just my biological makeup. Has anyone else had this? Before it happened I felt wired and edgy.

Afterwards I did a long guided meditation before I went to bed and I slept well. But I woke up in a sullen mood. Yesterday in the daytime I had been extremely happy. Anyway, trying to stay grounded and positive. Feeling mood swings and don't know if it's just me or the Harvoni.
Title: Re: Harvoni Side effects
Post by: sunrise on December 07, 2014, 09:57:25 pm
Hey Nicole
      I am on S/O treatment and yes I suffer from anxiety.it did intensify during this treatment. I did wind up getting some klonopins about my 7 week in. I really tried to do it without but it was becoming very hard. Talk to your doctor if you need to don't feel embarrassed because if you need the help you'll get it. just try to take things easy you'll be fine. I do take my ambien at night 5 milligram so I get a good night's sleep. Best of luck keep fighting the fight girl. Blessings sunrise
Title: Re: Harvoni Side effects
Post by: Doluska on December 07, 2014, 10:31:09 pm
Hi guys! Anxiety and crying, this is from med's, no doubt. RIBA rage as well. I am trying my best not to be rude and making a jokes about myself. Antidepressant is a must for me now. When my hepatologyst asked me :" May be u can be without antidepressant for 12 weeks?" I answered :"yes, Why not? Just a little bit of complication - I'll bite people on the streets. Is it OK?" Well, he smiled. Good night and wonderful week ahead. D
Title: Re: Harvoni Side effects
Post by: sunrise on December 07, 2014, 10:36:51 pm
Good come back D ! I know the anxirlety came on for me as the weeks progrssed
 How can I say...everything go more intense. I had this feeling of dread hanging over me. It's hard to explain but I definitely needed some pharmaceutical help. I try not to but I felt like snapping.....
Title: Re: Harvoni Side effects
Post by: UndetectableC on December 07, 2014, 10:47:46 pm
Day 5 into Harvoni. I had a horrible anxiety attack last night accompanied by lots of uncontrollable crying. I do have a history with anxiety but I haven't had an attack like that in over 2 years so it felt related to the chemicals. Used to get them a lot on the peg/interferon treatment and for years after off and on. Since then yoga and meditation has helped a lot. But at this point I never know what's from the hepc, the treatment or just my biological makeup. Has anyone else had this? Before it happened I felt wired and edgy.

Afterwards I did a long guided meditation before I went to bed and I slept well. But I woke up in a sullen mood. Yesterday in the daytime I had been extremely happy. Anyway, trying to stay grounded and positive. Feeling mood swings and don't know if it's just me or the Harvoni.

I felt an energy burst right away. I get edgy feelings from time to time, and weepy, too. They gently describe this SE as "Insomnia". And the spacy feelings and brain fog as "Fatigue". My husband (and probably several others) will confirm my moodiness. Hot baths, meditations and humor help.  It sounds like you are doing the right things to take care of yourself. Don't forget to drink enough water, too. Hang in there. :)
Title: Re: Harvoni Side effects
Post by: nicole_1234 on December 08, 2014, 12:38:25 am
Thank you all for sharing. It's somewhat comforting to know I'm not alone in this and that we can support each other. I will see how I go the next week and if there is more anxiety attacks I will consider meds. I hope not, i really worked hard to get to a place where I didn't need Xanax weekly for sleep and panic, and it's been 2 years of no meds at all and very healthy lifestyle.

In the mean time I will keep doing all the stuff I know how to try and balance the edginess. Yoga, meditation, baths, rest.
Title: Re: Harvoni Side effects
Post by: sunrise on December 08, 2014, 12:51:38 am
I hope that works for you Nicole. I got your araveduc massage site. Sure was nice. Warmed up some coconut oil and sooo relaxing thanks so much. Goodnight fellow warriors sweet dreams of UD :-)
Title: Re: Harvoni Side effects
Post by: JillLynn on December 08, 2014, 09:57:00 am
I just finished week 7 on Harvoni.   My virus is undetected as of week 6.   But my liver enzymes keep going up.     I had them rechecked Friday and they are even higher now.
I'm truly puzzled by this.    They have been normal for years and definitely on my charts I can see since October 1, 2014 they have been normal every blood test.    I'm just baffled by this.   

My Dr. said it could be from exercise, that those muscles release the same kind of enzymes.....but I haven't been exercising a ton other than walking a lot.

so I don't know ...  I'm kinda freaking out about this.
Title: Re: Harvoni Side effects
Post by: John3333 on December 08, 2014, 10:12:43 am
Don't freak out JillLynn, your virus is undetected so just keep taking the meds, it will work out, you'll see. Remember, Harvoni is a new drug, so there are going to be some things that we haven't heard about yet. Maybe some of the others who have more experience can offer some insight. I think the main thing is you are responding to the meds.
Title: Re: Harvoni Side effects
Post by: mario555 on December 08, 2014, 10:19:02 am
JillLynn. Did you check what you're eating? Try reduce anything that could be laden in fat (croissants, nuts, peanut butter, ice cream, etc....). Fatty food are the only items that can make my enzymes really jump. My ALT which hovers around 110 normal can jump to well above 400 if I eat nuts or ice cream. 
Also, it is true that exercise can do that also mainly exercise with long sessions (5-10 milles run, etc...)  Good luck!
Title: Re: Harvoni Side effects
Post by: art1951 on December 08, 2014, 11:30:19 am
When my liver enzymes were up my doctor initially thought that I needed to have my gall bladder removed.  They may just do that by default. 

Do you still have yours?

- Art
Title: Re: Harvoni Side effects
Post by: JillLynn on December 08, 2014, 11:53:55 am
Art....I do still have my gall bladder.  So this happened to you too?  hmmmmmm.
  Now my dr. is ordering a CPK blood test,   abdomen and pelvic ultrasound.    None of my symptoms (bloated, swollen and sore lower abdomen, and nausea) have anything to do with the antiviral Harvoni he said.       So...more tests and hopefully we can find out what the heck is going on.

Jill
Title: Re: Harvoni Side effects
Post by: JillLynn on December 08, 2014, 11:57:01 am
thanks John and Mario.     I eat really well.......so I don't think its from that.....but we'll see.   I'll definitely keep you posted.     I'm staying on Harvoni for sure.  I've only got 5 weeks left and still feeling super positive.    Just wish my liver enzymes would go down.   I know they'e not super high......but they're high for me.

ast-110
alt-241   
bili up a bit too but still low at 0.4
Title: Re: Harvoni Side effects
Post by: fllazylady on December 08, 2014, 07:29:05 pm
Hello Warriors,
Just wanted to check in let you know that I took my labs today. Four weeks in now. A couple of days before I can get results will post then but just had the weirdest day today. I was at the hospital early to have labs done and took my pill with me but Ended up taking it on empty stomach. I will never do that again..hit me hard for the first time achy Breaky weak leg feel like my head is in a fog..had to lay down type of stuff..just thought it was different been doing really well with hardly any sides at all. I always have breakfast before my pill. Think that really helps me because I don't think I could do this on an empty stomach. Made me feel really weird...heavy pharmaceutical feeling..don't like it..won't look back at this train stop..better day tomorrow I'm sure of it...Happy Holidays y'all.....
Title: Re: Harvoni Side effects
Post by: BattleTheBeast on December 08, 2014, 07:31:55 pm
Hi fllazylady,

Sorry you had a yucky day and tomorrow will be better. We are on the way to the cure!

Mel
Title: Re: Harvoni Side effects
Post by: fllazylady on December 08, 2014, 07:46:11 pm
 Thanks Mel I'm sure it will be a Great Day tomorrow..Riding the train to cure town....
Woo Hoo...
Take Care
Paulette
Title: Re: Harvoni Side effects
Post by: John3333 on December 08, 2014, 07:55:16 pm
Keep us posted JillLynn, stay positive and finish the treatment!

flazylady, thanks for posting your journey with Harvoni as I will be starting it soon. I am glad you guys are here posting your experiences, it's big help. 
Title: Re: Harvoni Side effects
Post by: scared of meds on December 08, 2014, 08:39:12 pm
Yes, I second John3333, I also will be starting my treatment soon and all of you sharing your experiences helps and encourages those of us who are just getting started. Thanks again,
Margo
Title: Re: Harvoni Side effects
Post by: BattleTheBeast on December 08, 2014, 09:17:35 pm
I just made the big switch from S/O to Harvoni and as grateful as I was to be on S/O I am even more grateful to be on the Harvoni. I had 8 full weeks before the switch and it was 8 tough weeks for me with the Olysio but I wouldn't quit for anything.

With the help of many angels I was finally able to move off of it and start Harvoni on Saturday morning. I can tell you so far it's been much easier on me than the Olysio was and I am beyond thankful.

Stay strong, stay positive, drinks lots of water, eat healthy and keep encouraging each other!

Mel~
Title: Re: Harvoni Side effects
Post by: sunrise on December 08, 2014, 09:37:15 pm
Hi Flazylady
     I just wanted to let you know that when I took my class with Gilead, the nurse has informed us that with Solvaldi it was not necessary to eat      .unfortunately she was not able to recommend anything about the other drug I had to take as it was being prescribed off label. With Olsyio, being that is it is a protease inhibitor.  That said, Harvoni is solvaldi with a different type of protease inhibitor.  as I read the prescription instructions for the protease inhibitor i was taking, it was very important to eat with it. Therefore I would recommend probably it would be good to eat, as you had such a bad reaction to taking it on an empty stomach. I'm sorry you had to go through that at the hospital and I hope you feel better.... sunrise
Title: Re: Harvoni Side effects
Post by: sunrise on December 08, 2014, 09:43:06 pm
Hey Mel
         just wanted to tell you congratulations on the Harvoni and tjat ypur tummy is feeling better. so you go to the doctor tomorrow for your blood? I'm really excited to hear the results. Get back to us on this, as I'm waiting with bated breath... Sunrise best wishes
Title: Re: Harvoni Side effects
Post by: BattleTheBeast on December 08, 2014, 10:02:14 pm
Hey Mel
         just wanted to tell you congratulations on the Harvoni and tjat ypur tummy is feeling better. so you go to the doctor tomorrow for your blood? I'm really excited to hear the results. Get back to us on this, as I'm waiting with bated breath... Sunrise best wishes

Hi Sunrise,

I go to the Doctor on Wednesday and probably won't get the results until the Monday after, they can be slow here in NJ but honestly I feel so much better today than even yesterday it's kind of scary. I am afraid to say I feel good and jinx myself. I have been so sick since last May that I am nervous that I don't feel horrible, isn't that crazy?

Thanks for your support, I am excited to find out how I am doing as well. I mean 8 full weeks of S/O combo and now Harvoni, what a lucky lady!

Mel~
Title: Re: Harvoni Side effects
Post by: sunrise on December 08, 2014, 10:19:43 pm
True that!
         Probably will do the trick!. I only have 12 days after today and to be honest, im scared about relapsing.  I know it's my anxiety rearing its ugly head, but I am fearful.  Maybe some words of encouragement migjt come in handy?  Thanks sunrise....
Title: Re: Harvoni Side effects
Post by: BattleTheBeast on December 08, 2014, 10:45:13 pm
True that!
         Probably will do the trick!. I only have 12 days after today and to be honest, im scared about relapsing.  I know it's my anxiety rearing its ugly head, but I am fearful.  Maybe some words of encouragement migjt come in handy?  Thanks sunrise....

Sunrise,

You know what's next if it doesn't work and so do I, the thing is that we have something now that wasn't there even 6 months ago, OPTIONS, so in another 6 months we will have more. We will all win this battle one cure at a time, maybe not today but it's coming. So just know inside that we will win and we will celebrate and we will encourage each other on our journeys, because in the short time since I have been here that's what I have learned and I am more than grateful,

Mel
Title: Re: Harvoni Side effects
Post by: sunrise on December 09, 2014, 12:22:37 am
Thanks Mel
     In my rational mind I know you're right. Of course my emotional mind is a different story. But you are right, there are other options,and I will keep that open mind after I finish my treatment. Thanks for the pep talk, and have a good night I'm glad you're not itching so much... Sunrise
Title: Re: Harvoni Side effects
Post by: nicole_1234 on December 09, 2014, 12:34:18 am
Day 6 on Harvoni and experiencing pain in my side and extreme edginess, like I want to jump out of my skin. The nurse told me Harvoni was similar to Ribavirin sx and I'm feeling it today. This edginess usually progresses in to an anxiety attack. I feel a tightness in my chest like I cannot breath. Shaky body and I can't sit still. Going to drink water and try to chill in a bath. I don't like this feeling though. I hope it gets better and not worse as I continue tx. Trying to think happy grateful thoughts and let it pass through me, healing me.
Title: Re: Harvoni Side effects
Post by: sunrise on December 09, 2014, 12:45:07 am
Hey Nicole
     Sorry your feeling like that. Still not considering a klonipam? I don't need it octen but it sure helps me when im like you are describing. .
Title: Re: Harvoni Side effects
Post by: nicole_1234 on December 09, 2014, 01:14:14 am
Hi Sunrise. It took me years after my peg/interferon tx to get free of xanax. I never became addicted to it but it was on off/on crutch and I feel like it altered my chemistry in a way that made me very unstable. I haven't touched a psychiatric drug in almost 2 years. At the end my depression/anxiety was really bad and I had awful reactions to zoloft and I felt like the drugs started to create the problem I was trying to fix in the first place. I decided to quit it all and go homeopathic and did exercise, yoga and meditation which helped tremendously.

I feel like klonipam is in the same family and if I can I want to avoid. For me, its a slippery slope. Of course if I end up sobbing for hours on end like I did on the peg/in treatment  I will talk to my doc. I just took a warm herbal bath and feel a bit better. I won't be stupid brave, but I am going to try to use the homeopathic resources I have for now to curb the anxiety.

Title: Re: Harvoni Side effects
Post by: sunrise on December 09, 2014, 07:31:38 am
I totally understand Nicole as I had to get away from xanax myself. I tried so hard to not use anything, but being on these meds I couldn't take supplements which helped immensely. The problem I had is I couldnt sleep and everday was getting harder and harder for me to function. My anxiety level had gone from 20 to 100 mph. So this is why I had to do something. I respect your strength, and hope you feel better sans pharmis. I hope that for me when this is over and I'm cured I woll be able tp wean myself off as well and get back to my supplements.  Best wishes. Have a great day...sunrise:-)
Title: Re: Harvoni Side effects
Post by: BattleTheBeast on December 09, 2014, 08:01:05 am
Hi Nicole,

Have you tried Essential Oils? When I am ready to snap I try to break out the Lavender Oil and it really does help me. See if you can find a good health food store around, they all have essential oils and you can see what works for you.

Sounds crazy how just smell can help but honestly it really does! Once you figure out what works best for you, there are alternative places to purchase that may be more cost effective (like Amazon)

Wishing you calm and Zen,

Mel
Title: Re: Harvoni Side effects
Post by: mario555 on December 09, 2014, 08:11:17 am
I'm now at the 4 weeks mark with blood tests scheduled for Thursday. My side effects have abated and I can now take the medication with no worry. I will agree that if you don't have side effects, I feel like maybe the pills were stale? What a crazy idea. For the ones that went on interferon, we ''knew'' we had a powerful medication; death was watching us! Now, with the few side effects, we feel we should feel something or else we worry!  I did have anxiety at the beginning but I took care of that with an old medication ''valium''. Valiums stay in your body for 2-3 days which gave me a chance to cool down and it did wonders for my mood...  I do not advocate pills much but, it is the least of our problem! We have to get a cure for a silent killer. After I get cured, I'll deal with whatever else there is. So for the ones starting Harvoni, be confident the treatment is generally well tolerated (as is written in the pamphlet). Good luck to everyone!
Title: Re: Harvoni Side effects
Post by: BattleTheBeast on December 09, 2014, 08:25:40 am
I'm now at the 4 weeks mark with blood tests scheduled for Thursday. My side effects have abated and I can now take the medication with no worry. I will agree that if you don't have side effects, I feel like maybe the pills were stale? What a crazy idea. For the ones that went on interferon, we ''knew'' we had a powerful medication; death was watching us! Now, with the few side effects, we feel we should feel something or else we worry!  I did have anxiety at the beginning but I took care of that with an old medication ''valium''. Valiums stay in your body for 2-3 days which gave me a chance to cool down and it did wonders for my mood...  I do not advocate pills much but, it is the least of our problem! We have to get a cure for a silent killer. After I get cured, I'll deal with whatever else there is. So for the ones starting Harvoni, be confident the treatment is generally well tolerated (as is written in the pamphlet). Good luck to everyone!

Hey Mario,

I was almost UD at 4 weeks; test showed <15 but my ALT and AST were back to 27 so I was thrilled because if nothing else my liver was getting a rest after years of this horrible infection. I go for my next test which turns out to be almost the end of 9 weeks on Wednesday. Beginning week 9 I was switched from S/O to Harvoni so I am looking forward to positive results. Either way I am going to keep fighting this and Harvoni so far has been much easier for me than the Olysio part of the the S/O combo.

People should do what works best for them no matter if it means a Valium, a Xanax or essential oils, the idea is to get through the treatment and be cured!

Mel
Title: Re: Harvoni Side effects
Post by: sunrise on December 09, 2014, 09:11:36 am
Amen to that Mel
         Have a Blessed day everyone. Off to work :-)
Title: Re: Harvoni Side effects
Post by: nicole_1234 on December 09, 2014, 11:13:25 am
Yes Mel thank you. I put lavender in a diffuser near my bed and was able to sleep. I will get through this. And to folks starting Harvoni don't worry it IS much easier to tolerate than peg/interferon tx. I'm just a sensitive battle weary soul. But I will prevail!!
Title: Re: Harvoni Side effects
Post by: nicole_1234 on December 09, 2014, 11:36:21 am
And Mel I'm rooting for you for this 9 week test you will be UD!!!
Title: Re: Harvoni Side effects
Post by: BattleTheBeast on December 09, 2014, 11:53:51 am
And Mel I'm rooting for you for this 9 week test you will be UD!!!

Thanks so much Nicole! I will take all the good will I can get!
Title: Re: Harvoni Side effects
Post by: BattleTheBeast on December 09, 2014, 11:55:05 am
Yes Mel thank you. I put lavender in a diffuser near my bed and was able to sleep. I will get through this. And to folks starting Harvoni don't worry it IS much easier to tolerate than peg/interferon tx. I'm just a sensitive battle weary soul. But I will prevail!!

Nicole,

I feel you, have you read some of my down in the dumps posts? I lose it all the time but as long as I get back up again that's what matters. Everyone is here to lift each other so here's a hand for you!

Mel~
Title: Re: Harvoni Side effects
Post by: fllazylady on December 09, 2014, 12:38:47 pm
So does this mean when we are cured we are cured??? Do we have to worry about relapse?? Just wondering...
Well I'm much better today Mel n Sunrise.. Never will I take that on an empty stomach..
Sending Light n Love to all..
Have a super day...
Title: Re: Harvoni Side effects
Post by: JillLynn on December 09, 2014, 05:26:26 pm
hello fellow warriors..........Now I think it's the zoloft that's making me so nauseous with the Harvoni.   Not positive, but am weaning off of it just in case.   As you know my ALT/AST levels have been rising since week 6 ( On Monday they were high, Friday even higher) so tomorrow I'm getting an abdominal and pelvic ultrasound and blood tests.     The zofran makes me feel even more nauseous and it's for nausea so not sure what's up with that.   It worked in the beginning.
      So....yes yes yes it beats the hell out of 48 weeks of PEG/RIB. (which I did 2X).   The first time my virus NEVER went away.  The 2nd time I was undetected for 9 months and my last blood test it was back.   So I'm whats known as a "chronic relapser" in the HCV world.
            I just wish I hadn't started the anti-depressant a month before treatment.   BUT.... I HAD NO IDEA I was going to get Harvoni.    The nausea has worn me down.   

I'm watching all of your updates......always sending healing light and love to you all......truly my fellow warriors on this HCV CURE JOURNEY.

peace
love
hug
Title: Re: Harvoni Side effects
Post by: sunrise on December 09, 2014, 05:36:05 pm
Oh JillLynn
       Im so sad you are suffering so badly. I hope that when you get off the Zoloft that your stomach will feel better. being that I'm on S/O I really haven't had a problem with nausea. But what I do have a problem with. It never has gone away, but the doctor is convinced it's not my liver. My alt and my AST have been down now to17and 15 so I don't understand where my pain is coming from. It usually starts in the early afternoon. Such a weird disease... I hope you all have a better evening much love... Sunrise
Title: Re: Harvoni Side effects
Post by: sunrise on December 09, 2014, 05:37:43 pm
I guess I left the part out where I have a pain on my side my right side
Title: Re: Harvoni Side effects
Post by: BattleTheBeast on December 09, 2014, 05:50:25 pm
Hi JillLynn and Sunrise,

I have good days and bad days. Today was a bad day and yesterday was a good day. I am learning that moving to Harvoni from S/O is not a just so simple and that Olysio is really messing with me still. I can't wait until my body normalizes from it. At least my rash is gone. Having a horrible issue with running to the restroom and lots of pain involved and that started late last night. Perhaps its a little stomach bug (One can only wish).

Tomorrow I go to the IDhero and I will ask him about what's happening and see if he has any suggestions. For now, I will stay hydrated and muddle through my misery.

I wish you both healing thoughts and tons of strength to get through this chaos called Hep C we are dealing with. When I see another person is cured it helps me to get through and we got a special one today with Bucky. Remember when it's a bad day to know we have hope and can do this.

Mel~
Title: Re: Harvoni Side effects
Post by: UndetectableC on December 09, 2014, 06:02:55 pm
Oh JillLynn
       Im so sad you are suffering so badly. I hope that when you get off the Zoloft that your stomach will feel better. being that I'm on S/O I really haven't had a problem with nausea. But what I do have a problem with [pain in my right side]. It never has gone away, but the doctor is convinced it's not my liver. My alt and my AST have been down now to17and 15 so I don't understand where my pain is coming from. It usually starts in the early afternoon. Such a weird disease... I hope you all have a better evening much love... Sunrise

if you Google "Can My Liver Feel Pain?" there's a really good web article that explains the pain we experience. Basically, your liver can't feel pain, but it can definitely cause pain.
Hope you are doing well today.
Title: Re: Harvoni Side effects
Post by: sunrise on December 09, 2014, 06:46:07 pm
Thank you undetectable I will Blessings Sunrise
Title: Re: Harvoni Side effects
Post by: Doluska on December 09, 2014, 09:29:44 pm
Dear Lynn! It is Zoloft, ask your shrink if u can go on remeron, my shrink was sitting with the pharmacist from Olysio for 1 hour and checking wich antidepressant is good for me; choise wasn't too wide: or Zoloft or remeron, I didn't want Zoloft, it cosing severe abdominal diskomfort for me, so - Remeron. And it works perfect. I have very good shrink, she found for me the ONLY antidepressant that is not filtered by liver, and this is Pristiq, it may be interesting for many of you,  fighters! Unfortunately, it cannot be used with Olysio, but after the treatment I will defenately go back to Pristiq, to be gentle with my poor liver. Good sleep and a lot of hope for all of us. D
Title: Re: Harvoni Side effects
Post by: JillLynn on December 10, 2014, 09:53:28 am
I woke up thinking of you all and this is my first stop of the day always!     
 
Doluska.......my sister in law who got colon cancer is on remeron.  (good news for her yesterday, she doesn't have to have another test for 3 years!) we were ecstatic!    Pristiq is pretty new right?    I don't want anything that can hurt my liver thats for sure.

I'll be checking in on you all........hoping and sending love and healing thoughts to each and every one of you that today is a good day!
 
Title: Re: Harvoni Side effects
Post by: sunrise on December 10, 2014, 10:03:12 am
That is so sweet of you JillLynn.we are here for you just as you are here for us. I think we all realize that how important it is that we have support. It's also my first stop in the morning too. I did read that article and it was very interesting about pain on your side. I really need to start eating more liver friendly foods I've been cheating a lot being that I'm on the medication.everybody have a blessed day and will talk to you soon much love sunrise
Title: Re: Harvoni Side effects
Post by: JillLynn on December 10, 2014, 10:14:12 am
I have to read that article Sunrise.....gonna read it now.  Really hope you have a pain free day!  xxoo


thank you Undetectable C for the article (I'm googling after this)
Mel.......big hug, hope today is a good one for you too.
Nicole
and flazylady and
Doluska......
hug hug hug!
Title: Re: Harvoni Side effects
Post by: nicole_1234 on December 15, 2014, 12:52:39 am
Hi everyone,

Just checking in. I'm 12 days in to Harvoni and my sx have gotten much better. Sleeping well, only slight headache/hangover feeling in the morning and still a bit more sensitive emotionally, but not freaking out panic type of thing. It's much more bearable now. Drinking lots of water and talking walks for exercise. Hopefully next week I can get back to yoga too!

Nicole
Title: Re: Harvoni Side effects
Post by: JoeK9999 on December 15, 2014, 06:28:01 am
I went to my doctor at 6.5 weeks into treatment, liver panel tests still normal. He decided to change me from 8 weeks to 12 weeks of Harvoni. I feel a lot better about that since at day 27 my virus was still detected. If he didn't change me to 12 weeks, I would have pushed it.
My vl was 3.8 million before treatment, but that test was take several months before I started the meds. In the back of my mind I always worried that just maybe I had a big spike in vl right before I started. Playing it safe.
I found out my doctor's wife was very ill and she passed away at a month into my treatment. That is when I found out about his wife. I know his mind was more on his family than his patients.

I am at day 54 today.
I feel better than I have in years. The overwhelming fatigue is gone, the stomach
related aches and pains are gone, the feelings of dizziness (almost vertigo) or gone.
These symptoms were all before I began treatment and rapidly began disappearing
after I began the meds.
Something is working and my body feels like it is rid of this virus. 32 more days and I am done. Taking this medicine for me, feels no different than taking a vitamin.

Genotype 1a
Infected for 25-39 years
Treatment naive
Title: Re: Harvoni Side effects
Post by: Proudgmma on December 15, 2014, 07:20:56 am
Hi all.

I am on day 3 of Harvoni and have absolutely no side effects except I am feeling better.

In reference to those of you having insomnia while on Harvoni, switch taking your pill to the mornings. I take mine after breakfast and have noticed after taking it I feel a little stimulated for a few hours but wears off by the evening. I believe this is what's keeping you from sleeping at night. I have no problems and sleep thru the night.

Good luck to everyone!
Title: Re: Harvoni Side effects
Post by: goodbyehepc on December 15, 2014, 09:38:54 am
I went to my doctor at 6.5 weeks into treatment, liver panel tests still normal. He decided to change me from 8 weeks to 12 weeks of Harvoni. I feel a lot better about that since at day 27 my virus was still detected. If he didn't change me to 12 weeks, I would have pushed it.
My vl was 3.8 million before treatment, but that test was take several months before I started the meds. In the back of my mind I always worried that just maybe I had a big spike in vl right before I started. Playing it safe.
I found out my doctor's wife was very ill and she passed away at a month into my treatment. That is when I found out about his wife. I know his mind was more on his family than his patients.

I am at day 54 today.
I feel better than I have in years. The overwhelming fatigue is gone, the stomach
related aches and pains are gone, the feelings of dizziness (almost vertigo) or gone.
These symptoms were all before I began treatment and rapidly began disappearing
after I began the meds.
Something is working and my body feels like it is rid of this virus. 32 more days and I am done. Taking this medicine for me, feels no different than taking a vitamin.

Genotype 1a
Infected for 25-39 years
Treatment naive

Hey Joe
All fantastic news! I asked my doctor why do some people take it 8 weeks and others 12 and he told me the normal time to take the treatment is for 12 weeks (naive) patients and for other they do longer treatment. He said 8 weeks is just a trial. I wanted to take it for only 8 weeks as it became undetected in the fourth week but after reading how some people relapse I wan to take no chances. SO yes you are right it is like taking a multivitamin and at this point my side effects are all gone (except can't sleep much even after switching my pill to morning). I only have the rest of December and then all of January so it's not that bad
Thanks

GHC
Title: Re: Harvoni Side effects
Post by: JillLynn on December 15, 2014, 10:32:57 am
Going for my 9 week VL.   Praying still undetected and that my liver enzymes go down!     I was in so much abdominal pain last night I slept in a ball.       For me, I believe, if I had to stay on harvoni for 48 weeks like I did peg/rib twice....it would be just as bad.   I've had horrible nausea and abdominal distress everyday.     So happy for you that don't have any sides.    WE all know drugs affect us all differently, and this has not been a picnic for me.


I've been infected since I was 19 years old and have had HCV for 41 years.
 Not sure if this matters or as I've stated before I'm a tiny female.    I never understand how the same dose for someone 100lbs. is the same as someone 400lbs.
Title: Re: Harvoni Side effects
Post by: sunrise on December 15, 2014, 10:36:39 am
JillLyn
 I feel so bad you have to go through these bad side effects. Have you talked to the doctor about some medication to help you? Let me know if you talk to anybody professional.I would think if you were having such bad side effects that the doctor would have to help you let me know... Sunrise
Title: Re: Harvoni Side effects
Post by: mario555 on December 15, 2014, 10:46:38 am
I Lynn,
Sorry to hear about your side effects. You seem to be alone with these stomach problems. For one thing, your virus is undetectable so the medication is working.  On the other hand, your enzymes are still very high which could tell you there is something else going on.  That would definitely open up a discussion with your doctor!!!
As for your comment about body sizes and dosing, you can feel assured that you are getting probably twice as much medication than a 200 pounds male but, you kicked the virus!
Hang on and get rid of the virus permanently!
Title: Re: Harvoni Side effects
Post by: badbradley on December 15, 2014, 11:53:43 am

 Not sure if this matters or as I've stated before I'm a tiny female.    I never understand how the same dose for someone 100lbs. is the same as someone 400lbs.
Hi Jill,
           I wondered the same thing. I treated on the same meds as Bucky, who is not a small boy - 6' 5", 240 lbs. We both did 12 wks. S/O. I am 5' 2" - 120 lbs. So, it has no bearing on body mass, as opposed to ribavirin and interferon treatments. These meds act directly on the virus, mainly viral replication, so it does it's magic in the blood stream, leaving one to consider blood volume-male vs. female,and the weight of each. Bucky has about 2 times the  blood volume than myself. These are highly effective and highly potent meds we're on as you know, Bucky is cured, and I'm waiting for the final verdict yet. UD as of end of treatment. So I have to conclude that even blood volume is no match for these meds.
    As I did not treat with Harvoni I can't further compare side effects, Olysio caused some minor problems for me - the usual,tiredness muscle aches. There seems to be a correlation between male vs. female regarding side effects. Seems more females have greater side effect issues-understandably.
   Hope you start feeling better soon. I like your back-flipping panda!
                                                                       Brad
Title: Re: Harvoni Side effects
Post by: sunrise on December 15, 2014, 01:54:58 pm
I agree Brad
    Ive gained weigbt since starting tx, but im a, hate to admit , now 180lb 5'6" in. I was 150 going in. That has been one of my side effects, insatiable hunger. Besides anxiety. Not any problems with sun sensitivity.  I wonder whats up with JillLynn. I'm sure there is some inderlying issue. Thats why I hope you call doc hun. I too was on S/O, but harvoni has sovaldi in it so it is probably comparable
Title: Re: Harvoni Side effects
Post by: nicole_1234 on December 16, 2014, 12:55:25 am
Jill Lynn, I had some stomach problems the first week on Harvoni. It's subsided now on the second. It was less painful, more of a rumbling really empty stomach feeling even if I had just eaten. I usually eat pretty healthy but I noticed raw veggies and juice were hard to digest so I basically started eating a ton of carbs. Healthy whole wheat bread and not so healthy pasta and muffins. I decided to just eat whatever I like and makes me feel good and comforting. Now my stomach doesn't bother me. It could also be I just adjusted to the meds. I'm sorry it's bothering you so much. Have you considered keeping a diary of foods you eat and how much water you consume and see if anything specific is triggering the worst of it?

I am having terrible emotions again today. Part of it is my nature of not being able to take it easy and I'm trying to do a million things at my usual pace and I have brain fog and it totally slows me and frustrates me and then I have a mini meltdown and cry about it. It's hard because I'm not myself and I'm afraid to tell everyone what's going on other than my closest friends. My boyfriend is also being extremely unreliable and having a hard time understanding and it's making me super sad.

I just realized I have to stop expectations of myself and others, remind myself daily I'm on treatment for 12 weeks it will be over before I know it, and in the meantime I cant "do it all" and I gotta slow down. I have to say I am generally an anxious person and do a lot of work to stay relaxed and have a peaceful mind. But I was feeling so balanced this last year from meditation and yoga and I feel like these meds are messing me up again.
Title: Re: Harvoni Side effects
Post by: SHEBA91514 on December 16, 2014, 02:39:45 am
I thank you all for your input.  I am in the process of getting approved for Harvoni.  Anxious to get through it.  I spent 3 different years on combinations of interferon and other medications.  I was diagnosed in 1989, the medications never worked but make me horribly sick.  I ended up with cirrhosis and liver cancer.  Luckily 2-1/2 years ago I received a great liver and I'm doing very well, except for the hep c.  Anyone else post liver transplant?


Hello all you wonderful and courageous people. I just visited with my hematologist today. Had my liver transplant 11th anniversary  on 12/06/14, yeah. I have Hep C also and he recommended Harvoni. So just wanted to touch bases with all you wonderful people and thank each and every one of you for sharing your experience with this magic pill. Will keep visiting for more input but have no clue as to when I will start if I do with this treatment. He is sending me for testing and blood work and will take it from there. Thanks again to all of you!  Sheba
Title: Re: Harvoni Side effects
Post by: JillLynn on December 16, 2014, 08:47:56 am
Good morning!
I got my tests back......Not the viral load results yet.......and I'll be darn my liver enzymes are still high.     AST-84   ALT- 168      Not astronomical, but my liver enzymes have been in normal range for a long time.   Just started elevating at week 6.   

Sunrise:  my Dr has given me compazine and zofran for nausea/upset stomach and neither works.    I've been drinking peppermint tea and trying ginger but nothing helps really....but I keep trying.   

I walk a lot to keep my mind off it......but I have to be honest.....I am puzzled and concerned!

Nicole.  Sorry your'e having a tough time (at least yesterday) with your emotions.   Todays a new day and I hope it's better for you.    We're all here to listen if it isn't.     No treatment is ever easy for me either and I hear you about meditation and yoga ( helps so much ) and it's easy to get knocked off our square when something like this enters our system.

Sunrise:   I have gained weight too!!   and I never gain weight.    and my stomach is really bloaty feeling and looking.   I just emailed my Dr. again to see about a lower GI or MRI.   

I'll be praying for you all........you all mean so much to me!  I wish I could have you all over for support groups and coffee and water and real life hugs!   

  Jill
Title: Re: Harvoni Side effects
Post by: mario555 on December 16, 2014, 09:22:13 am
To Nicole1234. Strange that you talked about emotional problems...  Yesterday I felt like I would blow up and felt like crying which is totally out of character for me. The emotions and feeling of tiredness and despair lasted 45 minutes but I had to leave work and go directly home. Those feelings abated after that time but... I don't really wish to experiment that again!
I'm 5 weeks into treatment (24 weeks) with Harvoni and have not had too many side effects until this emotional episode yesterday.  As for food, my weight never varies. I did gain weight in the first 2-3 weeks but I lost it since.  I just make sure I don't eat bad food (although since my liver feels better, I've had ''too many'' home made French fries and other shit I didn't eat before...).
So, for the emotional part, it seems to happen to people during treatment so make sure you can free yourself and change your frame of mind when it happens. Good luck!
Title: Re: Harvoni Side effects
Post by: CHepCFree on December 16, 2014, 09:55:25 am
Is anybody getting pain in the liver area?  That is the only side effect I've experienced.  I'm on Day 11 and this started at Day 7.  I called the doc and he said go to the emergency room.   All they did was keep me there 5 hours and do some bloodwork which showed my enzymes were fine.  I also called Gilead and they could not answer if that was one of the side effects reported and they only report those most often reported.   
Title: Re: Harvoni Side effects
Post by: JillLynn on December 16, 2014, 10:17:43 am
C HepCFree......I haven't had pain in my liver area and I have 3 more weeks of Harvoni.    5 hours...yikes!
  Sure hope it goes away soon.     
and hope you can get an answer.


Jill
Title: Re: Harvoni Side effects
Post by: JillLynn on December 16, 2014, 11:07:00 am
Update:   Just talked to my Hepatologist.......he says my symptoms are NOT related to the Harvoni.

So, thought i should share this!
He's waiting for my viral load results before recommending what we do about the abdominal stuff going on.

Jill
Title: Re: Harvoni Side effects
Post by: coco on December 16, 2014, 01:35:14 pm
I have now completed 1 month of harvoni.  At this time I only experience a little nausea for about 1 hour after taking it. For the 1st week I was nauseated, couldn't stay awake and was very, very tired.  All of that has passed except I don't sleep well.  This has been much, much, much better than the interferon.  That treatment was horrible.
Title: Re: Harvoni Side effects
Post by: BattleTheBeast on December 16, 2014, 03:57:18 pm
Update:   Just talked to my Hepatologist.......he says my symptoms are NOT related to the Harvoni.

So, thought i should share this!
He's waiting for my viral load results before recommending what we do about the abdominal stuff going on.

Jill

Hi Jill,

It's a little crazy isn't it? I felt like a darn pin cushion for a while when they were trying to get diagnose me. I'm glad it's not the treatment making you sick but hope they can figure out what is without too much trouble. I will be thinking of you.

Mel
Title: Re: Harvoni Side effects
Post by: HHburme on December 16, 2014, 10:19:33 pm
Harvoni day #4. Had manageable headaches, minor flu-like symptoms, nothing major. Now experiencing mouth sores......anyone else have this ??
Title: Re: Harvoni Side effects
Post by: BattleTheBeast on December 17, 2014, 07:52:36 am
Hi HH,

I had seen that on the forum before:

http://forums.hepmag.com/index.php?topic=1781.msg8243#msg8243 (http://forums.hepmag.com/index.php?topic=1781.msg8243#msg8243)

Hope you are feeling better!

Mel
Title: Re: Harvoni Side effects
Post by: JillLynn on December 17, 2014, 10:57:35 am
thank you Mel! 
  I know it's crazy!
Waiting on my 9 week viral load.....I know you'll be doing the happy dance with me when we hear the great "undetected" news!     I should know later today!  feeling positive!!!!!!!!

Title: Re: Harvoni Side effects
Post by: mario555 on December 17, 2014, 12:39:15 pm
Six weeks into treatment with Harvoni and my blood pressure keeps going up!
BP start of treatment = 120/80
BP at week 4 = 140/95
BP at week 6 = 150/100  !!!!!
I've never had blood pressure problems before. Anybody who had that problem lately? What actions have you taken to bring it down?  Does it keep going up?? There are some of you who are more advanced than me in their treatments. Did this happened to you?
Thanks for anyone who would have comments/suggestions for me
Mario
Title: Re: Harvoni Side effects
Post by: BattleTheBeast on December 17, 2014, 01:10:01 pm
Hi Mario,

Mine's been pretty stable, no major changes and usually 120-125 over 80. I have had it higher one time when I was fighting back pain during a visit.

That's been the case through S/O and now Harvoni.

Mel
Title: Re: Harvoni Side effects
Post by: art1951 on December 17, 2014, 01:34:31 pm
Six weeks into treatment with Harvoni and my blood pressure keeps going up!
BP start of treatment = 120/80
BP at week 4 = 140/95
BP at week 6 = 150/100  !!!!!
I've never had blood pressure problems before. Anybody who had that problem lately? What actions have you taken to bring it down?  Does it keep going up?? There are some of you who are more advanced than me in their treatments. Did this happened to you?
Thanks for anyone who would have comments/suggestions for me
Mario

Mario,
I had issues of about the same magnitude and had my general practitioner put me on blood pressure medication until I get off Harvoni.  I was getting headaches when my bp was up. 
-Art
Title: Re: Harvoni Side effects
Post by: JillLynn on December 17, 2014, 04:50:36 pm
   HCV RNA still not detected at 9 weeks!!!!!!
YAY!! happy dance!!!!!!!!
Shake it up baby....twist and shout!   

Title: Re: Harvoni Side effects
Post by: Doluska on December 17, 2014, 05:20:53 pm
Way to go! I am so happy to know that there is sucsess for most of us!!!!! We'll win, for sure!!!! Happy and bright holidays ! D
Title: Re: Harvoni Side effects
Post by: Doluska on December 17, 2014, 05:30:15 pm
Mario! I am on 8 weeks on S/O now, and my BP climbs up and HR as well. But my heart is badly compromised, so, I cannot complain, I knew that it will be hard, and my cardiologist is closely following me. Go to your family MD, he will take care about it. Don't live it unattended . It is not good for your heart and vessels. Good luck, D
Title: Re: Harvoni Side effects
Post by: RiseUp on December 17, 2014, 05:47:18 pm
Congrats JillLynn!  Great news! I'm on day one, took first pill this morning.  Praying for the best for all of us warriors.
Title: Re: Harvoni Side effects
Post by: nicole_1234 on December 17, 2014, 05:53:12 pm
Congrats Jill Lynn!!!! That's great news!

I just did 2 weeks test and I won't have my vl yet but I do see my Alt is down from 55 to 14 and AST from 63 to 18 so something is working! I'm feeling positive (to get negative;)


Ps I was in ER all day yesterday with my mother, she fractured her hip. Saw a lot of illness and even death the last 24 hours and just realizing to count my blessings and there is so much suffering in this world, yet there is always something to be grateful for. My mom is doing well and in good care.
Title: Re: Harvoni Side effects
Post by: BattleTheBeast on December 17, 2014, 05:56:00 pm
   HCV RNA still not detected at 9 weeks!!!!!!
YAY!! happy dance!!!!!!!!
Shake it up baby....twist and shout!   


WOOOHOOOOOOO!!!!!!!!!
Title: Re: Harvoni Side effects
Post by: ak on December 17, 2014, 06:14:25 pm
SO HAPPY FOR YOU... WHOOHOO is right!
Title: Re: Harvoni Side effects
Post by: badbradley on December 17, 2014, 08:44:55 pm
JyllLynn       Another UND! I'm very happy for you! What great news for the holidays. It's a good day!          Brad
Title: Re: Harvoni Side effects
Post by: JillLynn on December 17, 2014, 09:58:13 pm
BadBrad, ak, Mel, Nicole, RiseUp, Doluska :    THANK YOU!

Because my liver enzymes have been so abnormally high I was worried that the virus was back...I am feeling so relieved and hopeful and THANKFUL to have the support and sharing that we have we here.  it helps!

I'm wondering how sunrise is?  Haven't seen her today.   I start to look for you guys if I don't see you.  I care! xx

Nicole.....so glad your mom is ok......big hug!
Title: Re: Harvoni Side effects
Post by: UndetectableC on December 18, 2014, 10:44:44 am
Six weeks into treatment with Harvoni and my blood pressure keeps going up!
BP start of treatment = 120/80
BP at week 4 = 140/95
BP at week 6 = 150/100  !!!!!
I've never had blood pressure problems before. Anybody who had that problem lately? What actions have you taken to bring it down?  Does it keep going up?? There are some of you who are more advanced than me in their treatments. Did this happened to you?
Thanks for anyone who would have comments/suggestions for me
Mario

I have not had my BP taken since I started Harvoni, however, I did have a nose bleed one night which I attributed to high blood pressure from stress.
Title: Re: Harvoni Side effects
Post by: mario555 on December 18, 2014, 12:30:45 pm
For my blood pressure...  Since I've had my reading 3 days ago with an elevated blood pressure (150 over 100), I've started doing a little bit of effort to lower it down naturally (long walks, taking it easy, lowering my salt intake). It seems to have a direct effect on my light headaches which have almost disappeared. I'll continue these efforts and let you know how it goes...
Title: Re: Harvoni Side effects
Post by: jayme1017 on December 20, 2014, 11:29:03 am
Hi all,
I just wanted to share that I am experiencing a substantial "brain fog" for lack of a better term. Day 12 of Harvoni. A few people close to me have commented and I feel SO discombobulated it's debilitating. Of course I am VERY willing to go through this or worse to cure this horrific virus but I just wanted to share my frustration since this is really the only place I can do that. I don't have other side effects other than the occasional headache and feeling quite tired at end of day especially. Good vibes to you all!!
Title: Re: Harvoni Side effects
Post by: BattleTheBeast on December 20, 2014, 11:51:34 am
Hi Jayme,

I'd like to think that when we feel bad it's because the medication found some of the virus and it's very busy using all our internal energy to attack it! I know it may seem a bit weird but thinking that way works for me. This is a tough virus but these medications are tough as well and I would think there has to be some kind of impact while it's out there doing it's thing to rid us of the beast!

So take it as a positive sign, write notes for yourself till the fog lifts, maybe take a nap and let your body rest. I also had more brain fog when I didn't sleep enough or was super tired!

Mel
Title: Re: Harvoni Side effects
Post by: BattleTheBeast on December 20, 2014, 11:52:55 am
For my blood pressure...  Since I've had my reading 3 days ago with an elevated blood pressure (150 over 100), I've started doing a little bit of effort to lower it down naturally (long walks, taking it easy, lowering my salt intake). It seems to have a direct effect on my light headaches which have almost disappeared. I'll continue these efforts and let you know how it goes...

Hi Mario,

How are you doing with the High BP and headaches? Just checking on you...

Mel
Title: Re: Harvoni Side effects
Post by: nicole_1234 on December 20, 2014, 11:53:32 am
Hi Jayme, I'm experiencing the brain fog as well. I constantly walk in to a room thinking to do something and by the time I get there I've forgotten what I wanted to do. People tell me to write things down but I even have a hard time remembering what to write. I'm just trying to go with it for now, be kind to myself, rest easy and not worry too much. Luckily you're only on an eight week treatment and me 12 weeks. We can do it!
Title: Re: Harvoni Side effects
Post by: mario555 on December 20, 2014, 12:44:49 pm
To Mel. Headaches are very low intensity and not continuous. On the other hand, my blood pressure is still around 150. I was 120/80 my whole life so I'm positive it's treatment related. I have tintinitis where I hear noise but its intensity appears to be related to my changes in blood pressure. When I go for a long slow walk, the noise level decreases!! I have read other posts where other people mentioned this. Blood pressure increases and hearing sounds where not mentioned as side effects in the studies so I must be an unfortunate one... I don't care, I'll only be at risk for 18 more weeks.. I've changed my behavior a bit after reading you guy's posts on good nutrition and exercise. Thank you all...
Title: Re: Harvoni Side effects
Post by: BattleTheBeast on December 20, 2014, 01:02:57 pm
Hi Mario,

So glad you have found a way to help yourself but high BP is not something worse messing with so keep checking with your Dr. I really think they rushed these medications through (I am glad on one hand, a little apprehensive on the other) because there is so much money to be made with a treatment/cure for Hep C. This is big bucks, billions of dollars.

For me Olysio was poison and I still dealt with it for 9 weeks because beating Hep C is such a tough thing to do that  I figured I could deal with just about anything. I can tell you that now switched to Harvoni it's so much easier. I need to drink a ton of water to keep headaches down but I have not had to resort to even a tylenol for a headache since the switch over to Harvoni.  Last office visit and 5 days into Harvoni my BP was slighly elevated, like 128/84 but I am going to keep an eye on it because it always used to be perfect or a little low.

It's so cool how we can all share what's happening with us and our lessons learned through treatment.  We can see how others are managing their way through this because most of the doctors prescribing this weren't part of the clinicals and really only know what's been published which isn't much. I also think that in the clinical trials many people just "put up" with the sides if they are mild because they don't want to risk the chance of being removed. The trials can be really hard to get into unless you exactly match the criteria they are currently testing.

I learned from the people who handle the clinical trials at my ID docs office that in my area people with GT 1a, F3-F4, high viral load and treatment naive are very common so therefore I would have been at the bottom of a 200 plus person waiting list at their office alone. She recommended that if I could get my insurance to cover my medication it would be a much faster option. Not to mention if you want to do a clinical trial its mandatory to get a liver biopsy (no thank you).

Anyway enough of my rambling... have a great weekend.

Mel
Title: Re: Harvoni Side effects
Post by: HHburme on December 20, 2014, 02:07:31 pm
My BP is up, my Doc increased my meds to control. Had tinnitus prior to tx, but the sound (high frequency pitch) has increased. Day 8 of H and what I consider to be minor SE. I feel at times like the battle inside increases and have some weird sensations. 1 down, 11 more weeks to go.

Fight the Good Fight !!
Title: Re: Harvoni Side effects
Post by: BattleTheBeast on December 20, 2014, 02:27:18 pm
Thanks for sharing HH,

I really feel like we get a more realistic view of what's happening to people on the new medications than what the clinical trials showed.

I really believe any minor sides were downplayed or ignored by patients wanting so badly to be cured (would i complain about a little headache if I thought they would stop my trial, heck no).  I don't think we will get hit with any awful sides just these little nagging issues that pop up. Even a rise in BP can easily be explained off to stress of being on a trial or being sick in general.

I also firmly believe that when I felt the worst was when the medications were really attacking the virus about 2 weeks into treatment. Once I got back 6 weeks it was like a weight was slowly coming off of me. I was carrying a pretty high VL to begin and was really sick before I even started treatment.

Just my thoughts and thank you HH, glad you have your BP under control with the Dr.

Mel
Title: Re: Harvoni Side effects
Post by: paparocks on December 20, 2014, 05:47:42 pm
new to this site_____my doc seems to think that her office will have no problems in finding a solution to overcoming the financial hurdles involved with Harvoni ...and my insurance company. So maybe I'm getting ahead of myself when I say I'll be starting the treatment soon.
 I have epilepsy as well as hepc, with intractable sleeptime seizures. I'm curious if anyone here maintains regular sleep patterns...like sleeping through the night undisturbed? and not dozing off during the day?     
Title: Re: Harvoni Side effects
Post by: nicole_1234 on December 20, 2014, 06:14:01 pm
new to this site_____my doc seems to think that her office will have no problems in finding a solution to overcoming the financial hurdles involved with Harvoni ...and my insurance company. So maybe I'm getting ahead of myself when I say I'll be starting the treatment soon.
 I have epilepsy as well as hepc, with intractable sleeptime seizures. I'm curious if anyone here maintains regular sleep patterns...like sleeping through the night undisturbed? and not dozing off during the day?     

My sleep was disturbed the first few nights but now I sleep normally.
Title: Re: Harvoni Side effects
Post by: BattleTheBeast on December 20, 2014, 06:41:54 pm
Hi Paparocks,

Glad to have you join us! Sounds to me like you have a great doctor and his office is going to do all they can to help you, that's great news. Not everyone has that support so consider yourself blessed!

I've had sleep issues for a couple of years so it wouldn't be a fair assessment but I will share what's happened with me. I am no worse than I have ever been and the past couple of weeks slightly better at night. I try not to nap during the day unless I've had no sleep at night.

Wishing you the best with your treatment. let us know how you are doing!

Mel
Title: Re: Harvoni Side effects
Post by: RiseUp on December 20, 2014, 07:35:50 pm
Hi fellow warriors, I'm into day 4 Harvoni and so far no sides.  Just want to thank everyone for all their posts.  That have been very helpful.

I waited 17+ years to try treatment again and glad I found this forum. We all will beat this dragon, keep the faith and stay positive.   
Title: Re: Harvoni Side effects
Post by: badbradley on December 20, 2014, 07:48:19 pm
RiseUp,     Hope all goes well with treatment! Give that dragon a beatdown!
                                                 Brad
Title: Re: Harvoni Side effects
Post by: RiseUp on December 20, 2014, 07:58:59 pm
badbradley, thanks, I'm determined to clear the dragon this time.  How are you doing?
Title: Re: Harvoni Side effects
Post by: badbradley on December 20, 2014, 08:12:28 pm
RiseUp,       I'm doing well thanks. I'm about 6 wks post treatment. I'm feeling better each week. Have no signs of the dragon, knock on wood! Glad to be done with oly!
Title: Re: Harvoni Side effects
Post by: RiseUp on December 20, 2014, 08:21:09 pm
 badbradley,  that's great news.  Keep feeling better and keep the faith.  Happy for you.
Title: Re: Harvoni Side effects
Post by: BattleTheBeast on December 20, 2014, 08:32:53 pm
RiseUp,       I'm doing well thanks. I'm about 6 wks post treatment. I'm feeling better each week. Have no signs of the dragon, knock on wood! Glad to be done with oly!

Hey Brad,

So glad you are feeling better, that Oly well I think I still am having some stomach issues from it and it's been 2 weeks. I am so glad to be on Harvoni now.

Did you have any stomach issues after to deal with and if so how long did they last?

Thanks,

Mel
Title: Re: Harvoni Side effects
Post by: badbradley on December 20, 2014, 08:56:39 pm
Hi Mel,    I had some slight nausea at the start of treatment. No stomach issues after week 2 on treatment or post treatment. The best part of being med free is sleeping and dreaming again. I've had more dreams post treatment than I ever had in my life.
You know the kind of dreams that seem so real they're hard to bounce back from for a while. Love the rem sleep!
     It is good to hear your feeling better on Harvoni. I can "feel" your improved spirit after making the switch.
     BTW, You are making a difference! You are so helpful to many. Take care
Title: Re: Harvoni Side effects
Post by: BattleTheBeast on December 20, 2014, 09:18:01 pm
Thanks Brad,

It's so nice to be able to ask each other things, it really does help! I am so much better on Harvoni, 2 weeks in and I am starting to remember who I am again. I even left the house yesterday with makeup on and dressed nice to go out for a late birthday lunch with my middle child. I haven't done that for many many months.

I can't really remember the last time I had a nice dream, before starting treatment it was more like nightmares when I did sleep. Maybe my liver was trying to tell me about the beast attacking it!

It sure would be great to be able to have a nice dream again. The place I signed up to go Float at is opening in a week or so. I am so totally ready now to get into the isolation float chamber and totally relax my mind and body. I really hope it works for me.  I think I have been too tense for too long! Trying to keep up with work and home, family and responsibilities when you feel like crap tends to do that to you!

Brad, you help many on here as well. It's a real group effort and this forum is full of amazing people with so much knowledge and even more than that; so much heart.

Mel
Title: Re: Harvoni Side effects
Post by: Katie on December 21, 2014, 03:25:00 am
Hi everyone,  I've been on Harvoni 18 days already!  It is good to read about your experiences.  The treatment has been very beneficial for me.  My brain fog and fatigue left after the first couple days but my tinnitus increase to the point of sounding like the TV static...really bad for 2 days.  Then 2 days of absolutely no noise, which I haven't had for about 10 years or maybe more as that kind of sneaks up on you, and then it returned at a low level.  It was so wonderful to have silence so I am hoping that noise will end in the future.  I was always so exhausted I had to force myself out of bed.  Had bad insomnia for such a long time, I didn't know what it felt to be rested and now I am sleeping, and dreaming.  I am still not getting a full 8 hours of good rest, but at least 5-7 hrs, so it is wonderful.  I really think I was missing out on REM for many years because even when I did sleep I woke up exhausted and never felt like I had a dream.  Never!

My main problem is motivation.  Usually I am always busy doing projects but now that I feel much better, I can't get my butt in gear.  I just putz around.  Oh Well.

I wanted to ask if anyone is losing more hair than usual when showering?  My last shampooing it seemed like there was more hair loss than normal shedding.  Not an amount to panic over but just a bit more.

I did want to suggest acupuncture for those who are tense and even those with headaches and other issues.  It really forces your body to relax and lets the energy flow.  I don't understand how it works, but I am fortunate there is a great acupuncturist here who has helped me over the past 10 years when I was feeling so rotten.  When you are tense and anxious you have blockages and it can affect your entire health, including blood pressure, sleep and aches and pains.  Just a thought.  Like any field, there are really good practitioners and really bad ones so do your research.

I am very lucky with how I feel and hope all of you have less problems as your treatment continues.  Just having most of my brain back is remarkable.  Still a ways to go, but I find myself laughing easier, being more positive and just finding joy in the little things.  Before I was diagnosed (10 years ago) I told a friend I had "lost my spark" and I feel as if I am getting it back.  Slowly, but surely!  Enjoy your holidays and I'll be in touch again!
Katie
Title: Re: Harvoni Side effects
Post by: Katie on December 21, 2014, 03:25:57 am
My comment posted twice.  opps.  I guess I need to go to bed.  Goodnight!
Title: Re: Harvoni Side effects
Post by: JillLynn on December 21, 2014, 09:34:34 am
Mel....I love the"""" GO AWAY""" flashing icon!  You are something!     xxoo's
Now I gotta see if I can learn how to do that!

BadBrad.....I had my first "remembering" dream night before last!  It was amazing to wake up with a dream right there.  It's been a million years since I remembered a dream, mainly because I always feel like I'm "surface sleeping".....   Mine was of birds in my Tri colored beech tree I planted 25 years ago thats huge now,  and the hawk who was just sitting with them.     Normally, as everyone knows birds fly away when the hawk shows up.  I want more!

katie....No hair loss for me.   I did on PEG/RIB but not Harvoni.  someone else just posted the same question in one of our  threads here.



The suns coming out here....have a great day everyone!

Jill
Title: Re: Harvoni Side effects
Post by: BattleTheBeast on December 21, 2014, 12:49:32 pm
Mel....I love the"""" GO AWAY""" flashing icon!  You are something!     xxoo's
Now I gotta see if I can learn how to do that!
The suns coming out here....have a great day everyone!

Jill

Jill,

It's actually a dragon picture and then I layered the Go away on top of it but it's too small to see the dragon. There's this online animated avatar creator that's super easy to use but I didn't get the sizing right first time around.

I was having one of those nights without sleep again I was messing around with avatars. I have been running for the past couple of hours. Got grocery shopping done and the boys medication is now at home. I am about to crash for a couple of hours. I seem to have a real issue with intense lower back pain when I don't sleep so I am hoping a little heating pad time and a nap will knock the pain away.

What's up with Hep C and insomnia? UGH!!!! Its been either I am completely out of it and can't be awake or I am full of energy (and pain) and wide awake! I do have to admit I had 3 normal nights of sleep in the past two weeks, no dreams yet but I actually slept for 7-8 hours straight like a normal person, it was so amazing to sleep through the night!!!

Have a great day and enjoy the sun.
Title: Re: Harvoni Side effects
Post by: paparocks on December 21, 2014, 01:05:11 pm
thanks for the responses. the side effects of sleep issues and head aches are worrisome both. my epilepsy meds prevent me from taking Tylenol as well as keeping my sleep patterns consistent. my current regiment consists of 2mg of lorazepam @ bedtime to knock me out along with Vimpat(also a great drug from Gilead) and lamictal...all at night to keep me down and reduce the severity of my seizures. that may be hard to interpret, but in short, I'm pretty drugged up. introducing another med that reverses their effect may only mean more of the lorazepam which is addictive.....at worse I can see myself having to detox after the 12 weeks. I'd rather be stoned than dead. so I'm glad this community is here for advise, and I apologize ahead of time if I start posting as if I were a drunkard in the near future.
...curious about the drug testing by the insurance companies ahead of the approval. I dont live in a medical marijuana state but find that it is a great drug to combat the negative effects of my current meds..I stopped smoking a few weeks ago and it looks as if I may be keeping it that way.___depression, mood swing, lack of appetite, and worse of all Rage issues. I pray my wife can handle me.   
Title: Re: Harvoni Side effects
Post by: BattleTheBeast on December 21, 2014, 01:59:25 pm
Papa,

Take lots of walks when you feel up to it. Count to 100 when you feel the rage creeping and I highly recommend going to a health food store and checking out some essential oils, I know it sounds crazy but for me smelling lavender essential oil totally calms me. Bergamont is another one that helps me.

Here's an blog from someone talking about it with more details http://marycrimmins.com/top-10-essential-oils-to-support-anxiety/ (http://marycrimmins.com/top-10-essential-oils-to-support-anxiety/)

On 12/19 I celebrated my 1st year without a cigarette. When you stop smoking it really brings on the crazies! I actually use a Vapor Set up without nicotine because after smoking for 40 years I needed to do something and this was a way to slowly titrate down the nicotine, completely stop the tar and all the other evil chemicals in a cigarette. I applaud you quitting but tough timing to do so. I still want a cigarette and it's been over a year.

You for sure have some challenges ahead, even the Vimpat that you are on for your seizures can cause insomnia as well as some mood challenges. Just let loose on the forum any time you need to, we will all help you through the crazies; we have all been there (I admit it!)

Have a great day!

Mel
Title: Re: Harvoni Side effects
Post by: Haggis on December 21, 2014, 02:25:20 pm
Hey folks. New here.
I'm Genotype 1a, treatment naive and just started Harvoni yesterday. I was surprised that BC/BS approved me for it because I've had a positive diagnosis for 12 years and have probably had the virus for 20+, but my fibrosis hovers in the 1-2 range.
Anyhow, so far so good. A little bit of nausea yesterday, but no biggie. The thing I have noticed most is a metallic taste in my mouth. Is that a thing?
Title: Re: Harvoni Side effects
Post by: Katie on December 21, 2014, 02:36:58 pm
Hey folks. New here.
I'm Genotype 1a, treatment naive and just started Harvoni yesterday. I was surprised that BC/BS approved me for it because I've had a positive diagnosis for 12 years and have probably had the virus for 20+, but my fibrosis hovers in the 1-2 range.
Anyhow, so far so good. A little bit of nausea yesterday, but no biggie. The thing I have noticed most is a metallic taste in my mouth. Is that a thing?

Hi Haggis:  I did have a metallic taste just for the first couple days.  No more and I am on day 18.  I have been very fortunate and am feeling better and sleeping better than I have in years.  See my above post.  Welcome aboard and hope all goes well for you.
Katie
Title: Re: Harvoni Side effects
Post by: nicole_1234 on December 21, 2014, 07:09:29 pm
Hi Katie. I did notice some extra hair loss today when I showered, a big handful more than usual! I'm 18 days in. Well I'm glad it's 12 weeks I have a lot of hair. On 48 wk interferon I looked awful (and felt awful) by the end with half my hair and 20 lbs underweight. So just finding every reason to be thankful now!

Papa, before they started me on Harvoni I had to get a marijuana and alcohol test and be negative in order to start. And they will test periodically. I'm in Los Angeles on Kaiser. I'm sure different insurers have different standards, but as my doctor told me, they want to make sure they arent handing over $1200 pills to people that are intoxicated and might not adhere to proper regimen.
Title: Re: Harvoni Side effects
Post by: BattleTheBeast on December 21, 2014, 07:33:09 pm
Hey folks. New here.
I'm Genotype 1a, treatment naive and just started Harvoni yesterday. I was surprised that BC/BS approved me for it because I've had a positive diagnosis for 12 years and have probably had the virus for 20+, but my fibrosis hovers in the 1-2 range.
Anyhow, so far so good. A little bit of nausea yesterday, but no biggie. The thing I have noticed most is a metallic taste in my mouth. Is that a thing?

Hi Haggis,

Welcome to the forum, so happy you are here to share with us and even more happy you were able to get approved with a 1-2 range; it's really positive sign that you were approved and I am so excited for you to get treatment@

I never had a metallic taste and if I keep drinking the water consistently it seems to help with any little sides I do have on Harvoni.  I haven't had anything I would say is even worth mentioning as far as a side effect other than I really feel better than I have in years!

Keep smiling, stay positive and keep sharing. You found a huge group of people who support each other, it's really a special place.

Happy Almost Xmas!

Mel
Title: Re: Harvoni Side effects
Post by: Katie on December 21, 2014, 08:06:49 pm
Nicole 1234- I appreciate your reply.  It's always nice to have some confirmation on possible side effects.  Hope you are doing alright.  I read some of your earlier posts and it looks as if it has been difficult for you.  We are on the same time frame as tonight will be my 19th pill!  Time is going by fast, and that's good.

Take care, avoid stress if possible, drink lots of water and don't be hard on yourself!  I have pushed myself for years when I felt exhausted and crappy (ex:  I painted the siding of my entire house summer of 2013) and was a project person that amazed people, but all of a sudden I have no motivation even though I feel SO much better than I have in years!   I figure I just need to take it easy and let my body heal and I'm not worrying about it.  It's OK to let it go for now.  The projects will wait for me, so I just concentrate on keeping the house tidy and preparing nutritious meals.  Kind of like that old song...Don't Worry...Be Happy.  :)
Title: Re: Harvoni Side effects
Post by: JillLynn on December 22, 2014, 08:45:11 am
MEL.....whoa!  I have such horrible lower back pain too.    I can't believe you said that.......I sure hope it goes away.  I  ache all over..joints, muscles......I feel like I'm a 100 years old.     I've got 20 more days of Harvoni and if these aches/pains don't go away I've got serious investigating to do as to what the heck is going on now.   I haven't taken any acetaminophen but today I just might have to.   

Off to give more blood today and hoping my liver enzymes are going down.
20 more pills to go.....but who's counting? 

I never gain weight and sure have on this harvoni.    I'm 5'  100lbs and am up to 107......that's a lot for my size.  My jeans are mighty uncomfortable.   

I am sleeping again for the last 3 nights and so thankful for the gift of sleep. 
   
filled with hope for us all!   a cardinal just showed up on my feeder as I wrote that.  I'm taking that as a good sign.
Title: Re: Harvoni Side effects
Post by: JillLynn on December 22, 2014, 08:59:21 am
 haggis. Hi and welcome.   I had the metallic taste for just a few days and it went away.    Now that I'm off zoloft I have no nausea either.  The zoloft did not mix well with the harvoni and I had so much nausea.  Now that I've weaned off it.....all gone!

paparocks (great handle)   My husband (at the time boyfriend) stood by me on peg/rib twice.  Each time for 48 weeks.   It made me the worse human being ever as far as anger and rage.  He knew it was from the medication but why he chose to come over everyday and see me used to make me crazy.   I was like just stay away because I can't help myself.  I was too sick and couldn't be any other way.    I learned a lot about people being sick and acting so hateful because when you're that sick.....you just can't help it.   
      He loves me more than ever crazy guy!  (big smile!) 
I'm sure your wife knows your true heart and will forgive any temporary changes from your normally sweet patient loving self!   Best to you!

Jill


Title: Re: Harvoni Side effects
Post by: sunrise on December 22, 2014, 09:00:25 am
Hi JillLynn
 I'm so sorry you're feeling so bad honey. Even though I wasn't on harvoni. I have been taking the sovaldi with olysio.I gained 35 pounds as well as major leg and ankle pain. It might be attributed to the sovadi  part of the drug. I finished my treatment yesterday. And I'm going to get blood work today. I will let you know how things go with the pain and if I start losing weight. I hope you feeling better you might want to take something for it and drink plenty of water. Merry Christmas sweetie
Title: Re: Harvoni Side effects
Post by: JillLynn on December 22, 2014, 09:23:59 am
thank you sunrise........
     You are finito!!  oH hallelujah to that!  NOW, hoping so much the sides of weight gain and pain will go away for you as well.   
    when I mention my side effects to some people who don't understand HCV they always say "Oh everyone feels that way"  or "everyone has brain fog" not just HCV people.  So again I'm grateful for you and everyone being here.

I don't know what's from HCV or whats from my genetics or age or childhood .....but I know this virus we've been carrying around for years has taken it's toll on top of just other life stuff.    When you said you related to my post but didn't really feel it until your divorce.  I didn't either until my radio show was budget cut in Dec. 2009.     The universe (God) knew  it was time for me to deal.    Everything always makes sense when it's supposed to.

   Merry Christmas to you too Sunrise.  I thought of you this morning...the sunrise was deep pink and I wondered if you were enjoying it too!

Good luck with your bloodwork.   We'll all here wishing you the BEST BEST results!

Title: Re: Harvoni Side effects
Post by: mario555 on December 22, 2014, 01:08:41 pm
4 week test while on treatment. I just had a depressing news this morning concerning my 4 week blood draw after starting Harvoni. My ALT at 95 and AST at 90 are still twice the norm. I was hoping for half that. I haven't received my VL yet (takes 2 full weeks in Canada) but I sure hope it will look better! I am f4 borderline cirrhotic with 8 millions VL. My doctor has me for a 24 weeks treatment so I guess I know why now... I'll post my VL later on this week.
Title: Re: Harvoni Side effects
Post by: sunrise on December 22, 2014, 02:03:36 pm
Hey warriors!
          Well just got 5 viles taken out of me EOT. VL cbc. Waiting to hear. Hey Mario sorry for the disapointing news Don't fret though because it takes longer for folks that are more advanced to get their numbers down. Since you are on 24 week treatment that is a good tbing. Try to put it aside and have a nice holiday. You can deal with it after the new year comes. Hope you're drinking lots of water and getting your rest. Feel better hun. Everyone reacts different to these meds.
         Hey Jill Lynn, love your wolf avatar. Hunt down the hcv beast!!!!. Thanks for thinking about me when you saw the sunrise :-)....  blessings for a good day
Title: Re: Harvoni Side effects
Post by: BattleTheBeast on December 22, 2014, 03:45:43 pm
4 week test while on treatment. I just had a depressing news this morning concerning my 4 week blood draw after starting Harvoni. My ALT at 95 and AST at 90 are still twice the norm. I was hoping for half that. I haven't received my VL yet (takes 2 full weeks in Canada) but I sure hope it will look better! I am f4 borderline cirrhotic with 8 millions VL. My doctor has me for a 24 weeks treatment so I guess I know why now... I'll post my VL later on this week.

Hey Mario,

Keep your spirits up and in tact! You are going to be ok; we had close the same starting  VL load and I am F4 as well. I wasn't UD until week 9's test. Stay strong, stay happy, you have so many more weeks of medication left to take, there's a reason they recommend 24 weeks!

As Sunrise mentioned, drink lots of water, get plenty of rest, listen to your body!

You've got this!

Mel
Title: Re: Harvoni Side effects
Post by: derekoti on December 22, 2014, 04:32:12 pm
I really appreciate everyone taking the time to post their experiences with the treatment it gives me hope. Im kinda scarred because the Int/Rib/Incivek treatment a few years ago almost killed me my platelets were in the low 6s after 2 weeks, so Im really praying I can tolerate Harvoni. My doctor says he thinks it was from the ribaviron the last time. But after reading your posts Im hopeful, I start harvoni on the 3rd jan
Title: Re: Harvoni Side effects
Post by: Katie on December 22, 2014, 04:47:07 pm
Welcome to this forum derekoti!  You will find it very helpful.  Harvoni is easy on you compared to the old treatment.  I am fortunate as I have noticed very minor negative side effects and am feeling SO much better since starting the treatment.  I am amazed as I was expecting only negative.  I chose not to take the treatment 10 years ago as I didn't feel it was worth it but there are many on this site who did and are in a similar condition as you who are doing really well.

So here's to 2015!  It's going to be a great year and we are here for you!

Katie
Title: Re: Harvoni Side effects
Post by: JillLynn on December 22, 2014, 04:53:43 pm
mario....I'm being a prayer warrior for you right now.......good luck with those VL results! 



Derek.....WELCOME!    Harvoni is a million trillion times better than PEG/RIB.....did it twice nearly killed me both times too......seriously one rough evil of a ride!    Will be watching for your posts.


Jill
Title: Re: Harvoni Side effects
Post by: BattleTheBeast on December 22, 2014, 09:45:02 pm
mario....I'm being a prayer warrior for you right now.......good luck with those VL results! 

Derek.....WELCOME!    Harvoni is a million trillion times better than PEG/RIB.....did it twice nearly killed me both times too......seriously one rough evil of a ride!    Will be watching for your posts.

Jill

Jill you aren't just a prayer warrior, you are a complete warrior, I am in awe of what you have already done in an attempt to rid yourself of the virus and how you continue to fight. You are an inspiration!

Mel
Title: Re: Harvoni Side effects
Post by: sunrise on December 22, 2014, 10:07:46 pm
Yes welcome Derekoti
         You will do great. I'm just finishing Sovaldi Olysio and from what o hear its even easier on you. Just make sure to drink plenty of water andlisten to your bodys' energy cycles. I had alot of days where mid day I became fatigued and needed a nap. It really helped. Best wishes for your recovery. ...Sunrise
Title: Re: Harvoni Side effects
Post by: Katie on December 22, 2014, 10:28:01 pm
How are you doing Sunrise?  I have been reading your posts for the past month, prior to starting and then for the past 19 days while on S/O.  Thank you for sharing and being such a strong supporter of everyone.  It must be difficult waiting for that end of treatment blood work and know I am sending you high energy, good vibes.

Have a blessed Holiday Season!

Katie
Title: Re: Harvoni Side effects
Post by: sunrise on December 22, 2014, 10:39:00 pm
Same to you Katie
           Wish you the best as well and thank you. I just know how scarey ot can be. All the unknowns.Nice to have you with us. Have a Blessed Holiday.... Sunrise
Title: Re: Harvoni Side effects
Post by: Subwayco on December 24, 2014, 12:10:04 am
Hello everyone,

This my first post and I have had Hepatitis C 1a for 44 years.  I try not to do anything that could effect my liver.  Nothing!  I will tell you in a later post all about me and my journey.  I have cirrhosis but my liver is soft and I have the usual symptoms.  I am retired but like doing backyard projects.  If I go at it hard, I can't do anything the next day.  I've learn to paste myself but I wish I had more energy.
I've treated 3 times prior to my new treatment and I had some response but nothing that lasted. I'm now on Harvoni. and I'm almost 5 weeks into it.  I do have additional fatigue and sometimes a strong headache but really don't feel the drug.
That said, my 4 week labs shows my AST and ALT are now in the normal range.  I had 9,000.000.00 viral count and the labs showed my viral count as 40.  40?  What does that mean?   Does it mean if I tested a week later it would be zero? Seems like an odd number?  Could it be possible I have cells that just won't go away or should I not worry.

I have read most of the posts on this forum and already have gained a lot of knowledge. 

If you have the time please respond especially it you have similar results at week four.

Thanks for any and all help you can provide me!
Sincerely,
Rob
Title: Re: Harvoni Side effects
Post by: Lynn K on December 24, 2014, 12:18:29 am
Hi Rob

I have read there is no reason for you to worry. You have had a significant reduction in viral load and that is what matters. The experts say there is no connection with being UND at 4 weeks and eventual SVR12.

I could get some links you can read but really no worries you are on your way to being rid of this lousy virus.

How many weeks of Harvoni are you taking? I am assuming you are taking 24 weeks with cirrhosis.

Good luck to you
Lynn
Title: Re: Harvoni Side effects
Post by: Subwayco on December 24, 2014, 01:31:55 am
Thank you Lynn,

It's just an odd number that's all.  I'm have cirrhosis and they want me to take Harvoni for 4 months.  I've had upper right quadrant pain that really kicks up if I lift heavy items.  I don't seem to feel it that much now so that's a good thing.  With a count of 40 I should be glad rather than concerned.  Thank you for your comforting works. 

Merry Christmas,
Rob
Title: Re: Harvoni Side effects
Post by: Katie on December 24, 2014, 02:01:58 am
Rob...Congratulations!  You are doing terrific!  I will have my 4 week test in about 10 days and am hoping for similar results.  Keep us posted how you are doing and feel free to ask questions.  This forum has been so helpful to me and you'll have lots of support here.  It really is wonderful how this group shares and takes care of each other.

Enjoy your holidays and don't worry.  You are on the right path!

Katie
Title: Re: Harvoni Side effects
Post by: JillLynn on December 24, 2014, 10:15:27 am
Subway Rob........Nice seeing you here.    I was worried when at 4 weeks my viral load was still detected too, because so many weren't. 

Everyone on here put my mind at ease.    By week 6 I was the BIG UNDETECTED.   Even though its the SVR12or24.....it's still a boost to be undetected.   It has helped me just knowing that.

Like several on here including you,  I'm a "chronic relapser" of HCV treatments........so I know it ain't over til it's over but I'll take good my news along the way, thank you very much!     

keep up the good the fight....I KNOW YOU ARE!!!!!  Damn. you've been through a lot my friend!

Big cyber hug!

Jill
Title: Re: Harvoni Side effects
Post by: JillLynn on December 24, 2014, 10:18:20 am
Mel...thank you for what you wrote earlier.   That touched my heart a lot!     You have a gift my sister.

love, Jill
Title: Re: Harvoni Side effects
Post by: RiseUp on December 24, 2014, 10:26:17 am
Good morning my fellow warriors, I'm on day 8 Harvoni and happy to report that I have had no sides so far.  I want to thank everyone for all of their posts, they have been encouraging.  Looking forward to my 4 week blood results.  Keep the faith.
Title: Re: Harvoni Side effects
Post by: JohnJRJ on December 25, 2014, 05:54:02 am

First Harvoni pill taken @ 3:45 pm 24 dec 14:
ringing in ears (volume 10) @ 9:30 pm bed @ 11:13 pm fast to sleep, wake up 2:23 am ringing @ volume 7, pain in right quadrant & painful cramp in right calf
Title: Re: Harvoni Side effects
Post by: RiseUp on December 25, 2014, 09:05:42 am
Good Morning and Merry Christmas.  Just started day #9 no sides at all.  Praise the Lord.  Everyone have a Blessed and Merry Christmas.

Texasdave, how are you today?
Title: Re: Harvoni Side effects
Post by: JillLynn on December 25, 2014, 09:30:59 am
Beautiful sunrise RiseUP!  (or is that a sunset?)    love it either way!  Awesome to the no sides!   

John:   up all night huh?......  Sorry about the ringing in your ears and your pain.   Hope it's just the first day effects.
 
MERRY CHRISTMAS EVERYONE......if you don't celebrate,  then a good ole MERRY DAY TO YOU TOO.

I've got 2 feeders full of goldfinch,  cardinals on one and bluejays and chickadees on the other.   Miss the snow but oh well!   Being undetected is such a boost....having HOPE is too.   Feeling grateful!

Title: Re: Harvoni Side effects
Post by: sunrise on December 25, 2014, 09:56:29 am
Merry Christmas all warriors. Saying prayers for our healing and mercy. Thank you all for sharing both good and not so good times. Blessings... Sunrise
Title: Re: Harvoni Side effects
Post by: visoianu on December 25, 2014, 06:53:43 pm
I have started taking Harvoni eight weeks ago. Initial viral load a little under ½ million. After 4 weeks the load dropped to 40 and the liver enzymes became normal. I expected no detection by the end of 4'th week (rapid virological response) but it did not happen. The doctor increased the duration of the treatment from 8 weeks (as initially planned) to 12 weeks.
Main side effects: 1. A few days of slight headache, long gone; 2. High blood pressure, which I control by taking high blood pressure medicine in the morning and Harvoni in the afternoon; 3. Nightmares almost every night first five weeks. Then stopped.
Title: Re: Harvoni Side effects
Post by: Katie on December 25, 2014, 07:03:42 pm
Hi Visoianu!  Welcome and Happy Holidays to you this Christmas Day!  I am curious if you had high BP before starting treatment as my last check I had 104/62 and I am usually normal at about 115-120 over 70.  Just curious.  I hadn't had a dream I could remember for years and also had insomnia but since Harvoni, have been sleeping good (5-7 hrs a night) and had wonderful dreams, some disjointed and some like a good story, plus my brain fog and fatigue are basically gone.  It is wonderful to feel like my old self again, and better each day.  It is interesting to see how it affects people differently.

All and all, the benefits far outweigh any negative effects from this treatment for me and hope that is your experience as well.

2015 is going to be a great year!!!

Katie
Title: Re: Harvoni Side effects
Post by: Doluska on December 25, 2014, 09:38:56 pm
Hi gays! I didn't write couple of days! Marry Xmas for all of brave people, that are fighting the damn virus! I am ok, but getting a little bit tiered, my heart is weaker than usual, and I am taking it easy. I will finish my treatment in 3 weeks, and then - the game of waiting will start. I am happy, that my VL was undetected, in 4 weeks, but I don't think that from now I can be sure for the victory. I am telling to myself: go slowly, have plan B, live day by day, and do what u must to do. Hope for the best, but be ready for everything. This is my approach. It was working for me many times. And keep going, keep going! Good luck for all warriors!!!
Title: Re: Harvoni Side effects
Post by: BattleTheBeast on December 26, 2014, 12:43:43 am
Hiya Doluska,

Thanks for checking in, hope you are having a nice holiday and just taking care of you. It's going to be OK, we are all warriors and with all the new meds coming we will beat this horrible virus, we are the trailblazers! 2015 is going to be a much much better year for over 90% of us and that number keeps going up!

Hi visoianu,

I wasn't undetected at 4 weeks and was really bummed at first but you know what?I was undetected at 9 weeks and have a bunch more to go.  It sure sounds like you have a great doctor who is watching you closely to make sure you get the best treatment possible. Be patient, be happy we aren't on Interferon with only a 60% chance of beating this beast. We will win this war...

Take care,

Mel
Title: Re: Harvoni Side effects
Post by: JoeK9999 on December 26, 2014, 06:00:55 am
Update on side effects.
I am just starting week 10 of Harvoni. Side effects were basically non-existent until
about week 6. At week 6-7,  I began to get fatigue and brain fog. Did anyone else feel basically great for the first 6 weeks or so and then start having this happen?
Title: Re: Harvoni Side effects
Post by: JoeK9999 on December 26, 2014, 06:14:02 am
I have started taking Harvoni eight weeks ago. Initial viral load a little under ½ million. After 4 weeks the load dropped to 40 and the liver enzymes became normal. I expected no detection by the end of 4'th week (rapid virological response) but it did not happen. The doctor increased the duration of the treatment from 8 weeks (as initially planned) to 12 weeks.
Main side effects: 1. A few days of slight headache, long gone; 2. High blood pressure, which I control by taking high blood pressure medicine in the morning and Harvoni in the afternoon; 3. Nightmares almost every night first five weeks. Then stopped.

Visoianu,

I was on the 8 week treatment also and began with 3.8 million VL.
After 4 weeks I was detected and my ALT/AST went normal also. My doctor also moved me to a 12 week course of Harvoni. I haven't found the stats on Harvoni, but on the
Sovaldi/Olysio trials 43% were detected at 4 weeks still, and all those detected and undetected at 4 weeks ended up with the same rate of cure after a 12 week treatment.
Lucinda, the moderator, was UND at 4 weeks and then detected at 6 weeks and she is cured so just keep taking the pills for 12 weeks and all should be okay. I am just beginning week 10 and with barely any side effects for the first 6 weeks and feeling good, I am now getting fatigue and brain fog. I guess this is just how Harvoni works on some people.
Title: Re: Harvoni Side effects
Post by: JillLynn on December 26, 2014, 09:07:11 am
Hi All!    good morning!

 Hey Joe.....  I have a tad over 2 weeks to go on Harvoni.  ( my last blood draw will be Jan 12)  I am way more fatigued than usual.    My night owl days have come to an end that's for sure. 

     I haven't checked my BP or anything else so that could be high too, just not going to go to the DR until January 28 when I see my Hepatologist.     I don't really have much brain fog but at the end of the day, as I just said,  I am whipped.     And that's not me at all.
   
Soon though......this phase of whipping HeP C's butt will once again be over.    Been here before and hope to never have to be here again.   

  I'm just ready for this to be over.  Bottom line, just so ready!

   
       Harvoni:  I hope and pray is my last ever HCV drug......

and I hope and pray for all of you too!



Jill
Title: Re: Harvoni Side effects
Post by: elizabethfaraone on December 26, 2014, 12:23:56 pm
I am not working and resting through this treatment with Harvoni.  For the first two weeks, I took Tylenol as a preventive measure.

Day 1: Felt very achy and very tired most of the day and my nervous system felt a little strange but now I'm not feeling achy or tired and and I feel a fresh sensation coursing through my body - very strange

Day 2: Woke up and felt my usual achy, fatigued self.  The tiny, hard "pimples" that I've had on my torso and arms since February are disappearing quickly.  Sleeping a lot as rest brings relief from the body aches and extreme fatigue that the medicine is causing. With interferon, no amount of rest could bring relief from it's side effects, so I'm not complaining. But make no mistake, Harvoni is a strong medicine.

Day 3: I’m super tired

Day 5:  Very tired. Experiencing a little bit of sharp pains in my liver, but not intense pains. Just short-lived, mild, sharp pains.

Day 6:  Mild side effects from medicine have decreased.

Day 11:  My immune system feels stronger than it has been in the past 28 years. I've been prone to urogenital infections and I'm happy to say I no longer feel that vulnerability. There is a certain weakness that is hard to explain in that area that I am no longer feeling.  I'm still tired and achy, but not as tired and achy as the first few days of taking Harvoni. I don't feel like I'm experiencing side effects, although the fatigue might be a side effect. It's hard to know since I was fatigued before I started the Harvoni.

Day 13: Went to my sister's church Christmas party last night and danced, but shouldn't have. It made me feel sick. I have to continue to be gentle with myself while I'm taking this medicine. Resting up today.

Day 16:  I’m extremely tired but I’ve had to do more because construction work is being done in my apartment so I have to prepare and clean up afterwards.  The fatigue is more intense than usual. And I really can't do much of anything. Just came back from food shopping and I'm exhausted and feeling slight nausea. I also feel like it's more difficult for me to deal with other people's drama, but I must when it is thrust upon me. I wish I were on the beach in Tulum at this moment, with my friend, Juan, taking care of me. He was always such a good caretaker.

Day 20:  Side effects from Harvoni are still present but mild. Very tired, brain fog and an unusual feeling that is hard to describe. Felt like crying all day yesterday but still happy with the knowledge that I am being cured.

Day 21:  Just looked in the mirror and the circles under my eyes are SO DARK.

Day 22:  Went to my sweet doctor today. He told me that yesterday, AbbVie announced a deal with Express Scripts, the largest pharmacy benefit management organization in the United States, making Viekira Pak the exclusive hepatitis C drug covered by Express Scripts for patients infected with the genotype 1 virus. Wow. When I look at information online, it seems to me that Harvoni is the superior medicine. Is there no end to this insanity.

Day 25:  I'm still feeling very tired and am having a hard time with my housework. I'm also experiencing lung pain (I have a history of spontaneous pneumothorax), which is probably more due to the weather, but being weak can also bring on the pain.  Christmas day I was feeling sick from going out Christmas Eve. I stayed home instead of celebrating. Emotionally, I'm OK but I do notice that I get sad feelings and I understand it is a side effect of the medicine, so the sadness doesn't bother me at all. Now I know what it is like to have a chemical balance that causes sadness LOL. I wouldn't take antidepressants as they can muck things up even more. It's OK to feel sad and I think it's better, for me, just to accept the sadness, knowing it will pass.
Title: Re: Harvoni Side effects
Post by: paparocks on December 26, 2014, 12:36:48 pm
I went to a health seminar back in August. CREATION health was the title. It was very helpful in that I never realized the importance of when to sleep as to how much time(hours) to sleep. In the seminar it was suggested through actual studies that laying down at 10pm as to 11pm increases the amount of actual HARD sleep a person gets no matter if you're getting up an hour earlier or not.
Just something to consider for those having sleep issues.
_interpersonal relationships
_environment (clutter/cleanliness)
all improve ones ability to live happy healthy lives and improve your feeling of good health over all.....if you dont practice any of these things and are feeling sicker than you would prefer try something new and see if these things may help.
I feel like crap most of the time because of my epilepsy and simple adjustments have greatly improved my quality of life over all....I dont look forward to the weeks I will be on Harvoni but I'm confident I will adjust and be ok no matter what...
Title: Re: Harvoni Side effects
Post by: BattleTheBeast on December 26, 2014, 12:52:21 pm
Hi All!    good morning!
 
       Harvoni:  I hope and pray is my last ever HCV drug......

and I hope and pray for all of you too!

Jill

Hi Jill,

Morning, sounds like you are going ok, can you share some of your sleep time with me? I am back on the insomnia and rash phase which now must be blamed on the Sovaldi, yanno the drug with no side effects?
Our friend Rubye sent me a link the other day; sometimes I feel like I am really crazy and making this stuff up but I am on this insane roller coaster 3 days up, 4 days down, 2 days up and back down again! Check this out but pay particular attention to the more common list at the bottom and I swear I am so not a hypochondriac but I sure do feel like a whiny baby, I can't even imagine me on Interferon, the strength you all showed and many multiple times, just blows me away.

http://www.drugs.com/sfx/sovaldi-side-effects.html

The bottom list with the more common ones that you don't need to talk to your doctor about? I have every flipping one of them except the nausea which you had for me, so thank you and I am sorry I let you have that one. I would be happy to trade but they all kind of suck.

Anyway, I see my IDhero next Wednesday and I can't wait to hear what he has to say when he sees my arms covered in that wonderful hivelike rash. Not only did it come back, it's even more extreme. He's gonna need to fix something to handle the itch or I will be wearing long sleeves the rest of my life to hide the scars!  Next summer if you see a brunette walking on the Jersey Shore with long sleeves on that will be me!

Hey where's Willy?  Almost time for another missing persons report!

Have a happy Friday beautiful lady! Only a few more weeks for you and then we all wait together..

Mel
Title: Re: Harvoni Side effects
Post by: BattleTheBeast on December 26, 2014, 12:59:43 pm
Hi Elizabethfaraone,

Awesome post and diary you are keeping! I would tell you that you will feel better soon but I am not the one you should ask!

Keep hanging tough and doing exactly what you are doing, listen to your body and continue to be kind to it!

Hey Papa,

This is what happens when you don't sleep for 3 days, you get manic like I am right now............ I must stop and calm myself. I really need sleep. Oh and I have no interpersonal relationships right now because I am in hiding for my own well being and I love my family and friends to much to subject them to often to this Mel. For the clutter and cleanliness, I have my cleaning friend coming weekly just because I was sick before treatment even started so I knew I couldn't handle it alone with the teenage boy! But it really does feel better when the house is more organized.

And you will be ok no matter what, Harvoni is a cake walk, except my cake was made in an easy bake oven. Cake Boss is making yours!

Mel
Title: Re: Harvoni Side effects
Post by: Katie on December 26, 2014, 02:40:49 pm
Thanks for that site Mel!
What's strange is I looked up Harvoni side effects, which has ledipasvir /sofosbuvir and Solvadi has sofosbuir in it as well and the side effects listed only fatigue and headache as regularly occurring and hardly anything else.  One would think they would share more. Many of the side effects listed for Solvadi were what I experienced before treatment, from Hep C, so it is difficult to figure what is causing what.

I am so fortunate as my positives are still much greater than negatives, but then I do not have cirrhosis and this is the first treatment I have taken.  There are some on this forum who didn't experience any negatives until later on during their treatment so that may be coming for me.  I am still sleeping better than I have in years and am so grateful.

Sleep:
No caffeine after noon ( I do cheat with a little bit of chocolate in the early evening)

Stay hydrated throughout the day drinking a minimum of 1/2 gal of water

No Vit B12 after 2:00 pm (energy vitamin and it really wires me)

Magnesium and/or Taurine helps make you restful.  I would only take 1 pill before going to bed, which is less than they recommend (I use Gabatone and it really does make me peaceful but haven't needed it recently)

I always read for about 1/2 hour as reading helps my mind go to a different place and wind down preparing for sleep.

You probably know all of this Mel, but it is what has worked for me and prevented using drugs.  I have had horrible insomnia for close to a decade.

So 2015 is right around the corner and Here is to a Hep Free world for all of us, and for many more in the future!

Katie
Title: Re: Harvoni Side effects
Post by: elizabethfaraone on December 26, 2014, 05:14:44 pm
Sovaldi is the brand name for Sofosbuvir.
Title: Re: Harvoni Side effects
Post by: Katie on December 26, 2014, 05:19:45 pm
I know that Elizabeth, but mentioned it in case someone else wasn't sure.  Hope you are doing better today!Sounds like you are having a rough time of it  Lack of sleep is the worse as it affects everything else. Here's to Happy New Year!
Title: Re: Harvoni Side effects
Post by: RiseUp on December 26, 2014, 08:19:21 pm
Hi fellow warriors, took pill #10 today and very happy to report that I have had no side effects at all.  74 more to go.  Keep up the good fight everyone.
Title: Re: Harvoni Side effects
Post by: Rubye on December 26, 2014, 09:42:41 pm
Easy bake oven. Too funny Mel.

Title: Re: Harvoni Side effects
Post by: BattleTheBeast on December 26, 2014, 10:02:20 pm
Easy bake oven. Too funny Mel.

That's what happens when I am awake too long and delirious. I am laughing at all my posts yesterday and last night, oh my grammar teacher would be slapping my knuckles now!

I did sleep for 4 hours today and am about to try and knock myself out again. I'd like to have one semi-normal day this weekend.

Mel
Title: Re: Harvoni Side effects
Post by: goodbyehepc on December 27, 2014, 12:43:41 am
I went to my doctor at 6.5 weeks into treatment, liver panel tests still normal. He decided to change me from 8 weeks to 12 weeks of Harvoni. I feel a lot better about that since at day 27 my virus was still detected. If he didn't change me to 12 weeks, I would have pushed it.
My vl was 3.8 million before treatment, but that test was take several months before I started the meds. In the back of my mind I always worried that just maybe I had a big spike in vl right before I started. Playing it safe.
I found out my doctor's wife was very ill and she passed away at a month into my treatment. That is when I found out about his wife. I know his mind was more on his family than his patients.

I am at day 54 today.
I feel better than I have in years. The overwhelming fatigue is gone, the stomach
related aches and pains are gone, the feelings of dizziness (almost vertigo) or gone.
These symptoms were all before I began treatment and rapidly began disappearing
after I began the meds.
Something is working and my body feels like it is rid of this virus. 32 more days and I am done. Taking this medicine for me, feels no different than taking a vitamin.

Genotype 1a
Infected for 25-39 years
Treatment naive

Hi
Just incase your doctor didn't mention it the trials show that Harvoni is better to take 12 weeks than 8- there is a higher cure rate with 12 and less chance of relapse than taking it for 8 weeks.
GHC
Title: Re: Harvoni Side effects
Post by: Katie on December 27, 2014, 01:30:27 am
Glad you are doing so well Joe.  I am having the same result and am at day 24!  Next week, I can get my first blood work for my VL and I know it is going to be good news because I feel better than I have in YEARS! 

I am getting my spark back and my brain is working.  I was always very articulate and then about 12 years ago I started getting foggy and the last couple years I couldn't find the right word or name or date and I worried about getting Alzheimer's.  With my work I really needed to be sharp. I found my writing skills weren't impaired nearly as much.  I also felt like my vision was disconnected and I could be looking at something and not see it, if it was just slightly obscured.  Like I was looking through a tunnel.  All of that is going away. Harvoni is truly a miracle drug, and we are the lucky ones. Many went before us who didn't have this cure available.  I retired in 2013 so the stress of the job and of pretending I was healthy as an ox is gone and that's a blessing.  It is difficult to pull that off when you aren't sleeping and you have a difficult time completing a sentence sometimes. 

I will not be worried if it is NOT UD at 4 weeks but expect it to be way down.  For once I am excited about starting a New Year.  I welcome 2015 for me, for you and for everyone on this forum!  Bring it on!!!!
Title: Re: Harvoni Side effects
Post by: goodbyehepc on December 27, 2014, 02:01:00 am
My BP is up, my Doc increased my meds to control. Had tinnitus prior to tx, but the sound (high frequency pitch) has increased. Day 8 of H and what I consider to be minor SE. I feel at times like the battle inside increases and have some weird sensations. 1 down, 11 more weeks to go.

Fight the Good Fight !!

Hi
I was getting the tinnitus myself but it stopped about 6 weeks into treatment. I'm now on my ninth week and experiencing something new- achy joints and pains in one of my legs in particular which I will go to the doctor on Monday to see what's going on. I was undetectable at week four.
GHC
Title: Re: Harvoni Side effects
Post by: goodbyehepc on December 27, 2014, 02:06:49 am
GHC,
If I had the ability to take nap at 2:00 I would be doing fine.  I seem to recover quickly with a little rest.  I think I can manage this and it is getting better each week.  I work from 7 am till 5:30 each day.  I had thought about going home at lunchtime and resting but no longer feel it is necessary.

I do have additional energy now and am not sure if that is just because I am returning to normal or a side benefit of the Harvoni.  It does feel like my body is no longer having to fight the hep-c and I seem to be healing more quickly from infections etc.

Thanks,
Art

Hi Art
This is great news! You must be undetected by now  yes ? I have been getting join and muscle pain increasingly the past week. I'm not sure if it is from the medication or because I've dipped into some holiday sweets that have caused some inflammation in my body. How are you feeling now? I did not notice but I never get that afternoon Hepc tiredness anymore.
Happy Holidays
GHP
Title: Re: Harvoni Side effects
Post by: JillLynn on December 27, 2014, 09:50:58 am
Mel...DARN!  I'm sorry your rash is back and you aren't sleeping.  That makes me feel bad!
I wish I could post pictures on here of when I had the reaction to INT/RIB.   I'd like to compare with yours.    I soooooooo feel for you!!!!!!!! Oh my sister I'm so sorry this is back.   

I don't think for one second you are whiny or hypochondriac.    I get it...I truly do!
     my arms and legs and hands today look kinda like I was a burn victim from all the itching I did on that last treatment.   

I don't know why I have the gift of sleep right now.......but I'm grateful for it.  Not really doing anything differently.  Wish I could give you some suggestions but I really think it's just from being on the harvoni.    But I'm not sure about that either. 


Please keep us posted Mel.    DARN!  I just am feeling so bad you are having that reaction again.   
I'm saying extra prayers!


 GHC:    Thank you for sharing about your joint pain (I wasn't going to because I'm just assuming it's from the harvoni or maybe I'm just falling apart) NOT!
   Before I came to the forum just now,  I was researching back pain and even just wrote down the phone number of a pain clinic to see once I'm off treatment.   I've never had back and knee pain like I'm having right now.   I'm hoping and praying it's from the harvoni.  That's why I"m not going to the DR until I"m off treatment.   waiting waiting and hoping hoping.
 I'll be interested in knowing what your DR. says GHC.


it's a rainy day in MI.....glad you are all here!    big hugs! 
Title: Re: Harvoni Side effects
Post by: dragonslayer on December 27, 2014, 10:49:30 am
Hi
Just incase your doctor didn't mention it the trials show that Harvoni is better to take 12 weeks than 8- there is a higher cure rate with 12 and less chance of relapse than taking it for 8 weeks.
GHC

Can you please provide documentation of this, when dealing with treatment naive, non cirrhotic patients with viral loads < 6mil.  Ive studied the Ion-3 trial results which deal with the 8 wk treatment duration, and what you say isnt born out by the study result.

Specifically, from the Ion-3 trial:

"The treatment difference between the 8-week treatment of HARVONI and 12-week treatment of HARVONI was –2.3% (97.5% confidence interval –7.2% to 2.5%). Among subjects with a baseline HCV RNA <6 million IU/mL, the SVR was 97% (119/123) with 8-week treatment of HARVONI and 96% (126/131) with 12-week treatment of HARVONI. "

In addition, Table 7 of the results for Ion-3 shows the relapse rate for those with viral load < 6mil to be 2% in the 8wk group, and the same 2% in the 12.  So Im most anxious to see where you are getting your trial information from.
Title: Re: Harvoni Side effects
Post by: JoeK9999 on December 27, 2014, 11:31:51 am
Can you please provide documentation of this, when dealing with treatment naive, non cirrhotic patients with viral loads < 6mil.  Ive studied the Ion-3 trial results which deal with the 8 wk treatment duration, and what you say isnt born out by the study result.

Specifically, from the Ion-3 trial:

"The treatment difference between the 8-week treatment of HARVONI and 12-week treatment of HARVONI was –2.3% (97.5% confidence interval –7.2% to 2.5%). Among subjects with a baseline HCV RNA <6 million IU/mL, the SVR was 97% (119/123) with 8-week treatment of HARVONI and 96% (126/131) with 12-week treatment of HARVONI. "

In addition, Table 7 of the results for Ion-3 shows the relapse rate for those with viral load < 6mil to be 2% in the 8wk group, and the same 2% in the 12.  So Im most anxious to see where you are getting your trial information from.

Paul you are correct. GHC was responding to me about me getting switched from 8-12
weeks. I met the 3 criterias for 8 weeks. At 27 days I was still detected and my vl test prior to treatment was 3 months prior to treatment. I know as much if not more than a lot of the doctors about the drugs, results and treatment time from lots of reading for years. I didn't pay too much attention to my 3.8 million VL prior to treatment because initially I was going on 12 weeks anyway. My doc changed to 8 weeks after a 10 day normal liver function. Then I read one study done about untreated Hep C VL fluctuation where it proved VL can fluctuate a lot in a short period of time untreated. I only had VL tested 3 times in my life before tx. 14 million 5.8 million and 3.8 million. 
Based on the unknown and a 27 day detected, I would have insisted on 12 weeks if my doctor didn't switch me on his own. I don't know for a fact if 4 more weeks will make a difference, but I did not want to chance it.
Title: Re: Harvoni Side effects
Post by: dragonslayer on December 27, 2014, 11:56:29 am
Paul you are correct. GHC was responding to me about me getting switched from 8-12
weeks. I met the 3 criterias for 8 weeks. At 27 days I was still detected and my vl test prior to treatment was 3 months prior to treatment. I know as much if not more than a lot of the doctors about the drugs, results and treatment time from lots of reading for years. I didn't pay too much attention to my 3.8 million VL prior to treatment because initially I was going on 12 weeks anyway. My doc changed to 8 weeks after a 10 day normal liver function. Then I read one study done about untreated Hep C VL fluctuation where it proved VL can fluctuate a lot in a short period of time untreated. I only had VL tested 3 times in my life before tx. 14 million 5.8 million and 3.8 million. 
Based on the unknown and a 27 day detected, I would have insisted on 12 weeks if my doctor didn't switch me on his own. I don't know for a fact if 4 more weeks will make a difference, but I did not want to chance it.

Hi Joe... I read one other post where VL was still positive after 4 wks.. But after 6 wks, had gone on to become UD.  The trial results interestingly show 0  on-treatment virologic  failures both in the 8wk group (0/215) and 12wk (0/216), indicating that even had you stayed with the 8k duration, you almost certainly would have cleared before the end of 8 wks.  I understand that in your case, having had viral load results of as  high as 14mil and also very close to 6 mil, and not having had the most recent test prior to treatment any more recent than 3 mos, why you and the doctor felt it prudent to increase your duration.. For my part, Ive had 3 viral loads done: ~3 mil in 2008, ~1 mil in 2011, and 2.4mil in 2014 3 wks before treatment was to commence.   I think anybody who can get prescribed and covered for 12 wks is lucky and should go for it.  Nevertheless, the 8wk trial results are every bit as encouraging for the group for whom it is meant as are the 12 wk trial results.   Best of luck....
Title: Re: Harvoni Side effects
Post by: jberlin on December 27, 2014, 12:29:21 pm
Great discussion all!  Please be careful in suggesting treatment options, as everyone's situation is different.  I enjoyed the addition of results from scientific studies as it really helps to inform our forum readers, but the warning in big print needs to be always to discuss treatment options with a medical professional that has direct experience with treating Hep C. I hope everyone is having a nice holiday season.  -jack
Title: Re: Harvoni Side effects
Post by: goodbyehepc on December 28, 2014, 02:40:10 am
Can you please provide documentation of this, when dealing with treatment naive, non cirrhotic patients with viral loads < 6mil.  Ive studied the Ion-3 trial results which deal with the 8 wk treatment duration, and what you say isnt born out by the study result.

Specifically, from the Ion-3 trial:

"The treatment difference between the 8-week treatment of HARVONI and 12-week treatment of HARVONI was –2.3% (97.5% confidence interval –7.2% to 2.5%). Among subjects with a baseline HCV RNA <6 million IU/mL, the SVR was 97% (119/123) with 8-week treatment of HARVONI and 96% (126/131) with 12-week treatment of HARVONI. "

In addition, Table 7 of the results for Ion-3 shows the relapse rate for those with viral load < 6mil to be 2% in the 8wk group, and the same 2% in the 12.  So Im most anxious to see where you are getting your trial information from.

Both my doctor and pharmacist confirmed 12 week treatment is better - my insurance company wanted to stop paying for treatment at 8 weeks but my doctor was able to show from the studies that 12 week treatment was more effective and less chance for relapse. Nowhere in the study does it say treatment should be for 8 weeks it merely states that one can do 8 but the studies show 12 weeks is more effective and less chance of relapse.  One cannot trust this virus - it's known to show as gone and then come back. And I know plenty of people that did old treatments and that's what happened. Now they are on Harvoni some for 12 weeks and some longer.

Go to:
Harvoni.com or Gilead website or  http://www.gilead.com/~/media/Files/pdfs/medicines/liver-disease/harvoni/harvoni_pi.pdf

See: Table 6 Study ION-3:
Response Rates after 8 and 12 Weeks of Treatment in
Treatment-Naïve Non-Cirrhotic Subjects with Genotype 1 CHC

The relapse for 8 weeks is 5% the relapse for 12 weeks is 1%
Title: Re: Harvoni Side effects
Post by: goodbyehepc on December 28, 2014, 02:49:38 am
Hi Joe... I read one other post where VL was still positive after 4 wks.. But after 6 wks, had gone on to become UD.  The trial results interestingly show 0  on-treatment virologic  failures both in the 8wk group (0/215) and 12wk (0/216), indicating that even had you stayed with the 8k duration, you almost certainly would have cleared before the end of 8 wks.  I understand that in your case, having had viral load results of as  high as 14mil and also very close to 6 mil, and not having had the most recent test prior to treatment any more recent than 3 mos, why you and the doctor felt it prudent to increase your duration.. For my part, Ive had 3 viral loads done: ~3 mil in 2008, ~1 mil in 2011, and 2.4mil in 2014 3 wks before treatment was to commence.   I think anybody who can get prescribed and covered for 12 wks is lucky and should go for it.  Nevertheless, the 8wk trial results are every bit as encouraging for the group for whom it is meant as are the 12 wk trial results.   Best of luck....

I agree with all this especially about doing 12 weeks - my doc wanted that for me. We fought tooth and nail for 12 weeks because the insurance company wanted to stop at 8 weeks but they are not the doctor nor the patient so it's easy for them to say if you show a certain VL at 8 weeks then stop. Pfft yet they know there are people on Harvoni now who are doing treatment second time around because their virus came back. One would think they would want to go for the treatment duration which shows the least amount of chance for relapse which seems to be 12 weeks for many
Title: Re: Harvoni Side effects
Post by: JoeK9999 on December 28, 2014, 07:20:41 am
My opinion is if you can stay on the treatment longer the better the chances
even if the SRV percentages are lower as the treatment duration lengthens. They did a 6 week Harvoni trial and about 67% achieved SRV and the rest did not. A 2 week increment increased the odds tremendously.  Gilead throws in the disclaimer that 8 weeks can be considered and
the only reason they put that in was to encourage the insurance companies to force
a cheaper treatment path. Insurance companies are not advocates of the patients.
They are all basically big stock brokerage houses looking for as big a profit as they can make. Yes I believe and it is a fact that 8 weeks cured high percentages, but I personally want the best chance I can get. No different than taking antibiotics for too short a time. The stats from millions are already available for antibiotics.
The Harvoni clinical trials were a sampling of a few thousand people.The real study is what is going on now with all of us. 100's of thousands.
Title: Re: Harvoni Side effects
Post by: dragonslayer on December 28, 2014, 09:08:59 am
Both my doctor and pharmacist confirmed 12 week treatment is better - my insurance company wanted to stop paying for treatment at 8 weeks but my doctor was able to show from the studies that 12 week treatment was more effective and less chance for relapse. Nowhere in the study does it say treatment should be for 8 weeks it merely states that one can do 8 but the studies show 12 weeks is more effective and less chance of relapse.  One cannot trust this virus - it's known to show as gone and then come back. And I know plenty of people that did old treatments and that's what happened. Now they are on Harvoni some for 12 weeks and some longer.

Go to:
Harvoni.com or Gilead website or  http://www.gilead.com/~/media/Files/pdfs/medicines/liver-disease/harvoni/harvoni_pi.pdf

See: Table 6 Study ION-3:
Response Rates after 8 and 12 Weeks of Treatment in
Treatment-Naïve Non-Cirrhotic Subjects with Genotype 1 CHC

The relapse for 8 weeks is 5% the relapse for 12 weeks is 1%

Yes, in so far as this stat goes.. The error youre making is that you're failing to recognize that this 5% value is NOT segmented by viral load..  When they segment the results by viral load, we get the results seen in the paragraph beneath table 6:

" Among subjects with a baseline HCV RNA <6 million IU/mL, the SVR was 97% (119/123) with 8-week treatment of HARVONI and 96% (126/131) with 12-week treatment of HARVONI. "

Table 7 bears this out as well, showing a 2% relapse after 8 wks in the lower viral load group, but a 10% relapse in in the higher viral load group. 

Once you segment the data by viral load as seen in the Ion-3 published results, you'll find that there is NO data that favors 12wks treatment over 8 for viral loads < 6mil.

When you read the data you must look at all the relevant data.

>>And I know plenty of people that did old treatments and that's what happened. Now they are on Harvoni some for 12 weeks and some longer.<<

Sure.. Because  prior treatment failures have a 12 wk or 24 wk treatment protocol!  Those results are reported in the Ion-2 study.  You cant make any determinations about 8 wk treatment protocol for treatment-naive lower VL patients from the data derived from patients with prior treatment failure and no VL segmentation.   People should really stop conflating the study results!
Title: Re: Harvoni Side effects
Post by: lporterrn on December 28, 2014, 11:20:39 am
Isn't it amazing how complicated data can be? Add in emotions and opinions, and we can have a field day! I looked at the data too, and wondered what I'd do if I was a clinician, or what I'd be concerned about if I was a patient. I can see the argument for extending the treatment to 12 weeks for GT 1a VL < 6 mil. (see table 6 http://www.gilead.com/~/media/Files/pdfs/medicines/liver-disease/harvoni/harvoni_pi.pdf (http://www.gilead.com/~/media/Files/pdfs/medicines/liver-disease/harvoni/harvoni_pi.pdf)The biggest problems with these data are they are still relatively small (esp GT 1b's) and I have not seen a real breakdown of the results. For instance is the a difference between stage 2 vs stage 3 GT1a's?

Here is where it gets really tricky - when data say one thing and your doc or your gut say something else. We use data in a quest for certainty - to make sound decisions. But this data is all so close, that in the end the only certainty we get is that final lab results - either we are cured or we aren't. What I really hope for every patient is that they can live with the decisions, embrace them, then let them go. What will be will be. If you can let poor outcomes be nothing more than a temporary disappointment and then get back on track, it helps. Yes, we are dealing with our lives, but life is what we are doing in the moment, and these moments are all so precious.

I think it is time to agree to disagree, and move on from this discussion.   
Title: Re: Harvoni Side effects
Post by: audreywald on December 28, 2014, 02:25:07 pm
Hi Everyone,
My name is Audrey and I was just approved for the Harvoni. I don't know how this happened but it isn't going to cost me a penny. I am on disability because of this illness and have been for about 10 years. Last checked I was at around stage 3 and a half and my viral load was over 15 million. I think that is why Medicare is picking up the whole tab. An old friend of mine just finished this tx and she is pronounced CURED with minimal side effects. I tried the peg/riboviran and each time they took me off of it. First time after 2 shots because I told my Doc that I could understand why people wanted to kill themselves on these drugs. She stopped me that day. 2nd time I made 7 weeks but I got a retinal bleed, told her I wanted to "tough" it out. She told me I could lose my vision and I changed me mind then and there. Third time (new doc; Steven Flamm) in Chicago at Northwestern Univ hospital. After severe pain in areas I did not even know I had organs, I saw my doc at week 13 and he took me off. Said my viral load had not dropped enough to be worth keeping me on it.
So even if I were willing to try the old drugs again (which I am not) Medicare will not pay again foor the old stuff. But they are paying for this new regime, it will be delivered Wednesday, gotta see my doc and then I begin.
Anything I should know?
Title: Re: Harvoni Side effects
Post by: nicole_1234 on December 28, 2014, 03:34:18 pm
Hi Audrey! Congrats on getting Harvoni. All I can say is that it is so much better than interferon/riba and my side effects have been minimal. I only had the nerve to do interferon treatment once and I did 48 weeks but was a slow responder. When they asked me to continue to 72weeks I couldn't do it. But Harvoni is a breeze in comparison and in 2 weeks my vl shows <15. I take my 4 week test this week and am praying for undectected. Good luck and once you start we are all here for you should questions arise or just if you need support.

Nicole
Title: Re: Harvoni Side effects
Post by: elizabethfaraone on December 28, 2014, 04:54:12 pm
Hi Audrey.  You'll find Harvoni is easy to tolerate.  I've been resting the entire time and that keeps the side effects minimal.  You sound like you are sensitive to medication, as am I, and Harvoni's side effects are minimal with me.  I tried Interferon once many years ago and I stopped after the first shot.  Talk about painful.  I was bruising and losing a pound a day.  And I felt the side effects for three months.  I'll never forget it.  It was frightening.  I had no interest in continuing and decided then to wait for the development of safe and effective medicines.
Title: Re: Harvoni Side effects
Post by: HHburme on December 28, 2014, 06:02:27 pm
Hi Audrey !!   Good to hear to hear you will be starting harvoni. I'm on day 16. Dr Flamm is my hepatologist, really smart and super cool. Good luck to you.

Fight the Good Fight !
Title: Re: Harvoni Side effects
Post by: art1951 on December 28, 2014, 10:50:59 pm
Hi Art
This is great news! You must be undetected by now  yes ? I have been getting join and muscle pain increasingly the past week. I'm not sure if it is from the medication or because I've dipped into some holiday sweets that have caused some inflammation in my body. How are you feeling now? I did not notice but I never get that afternoon Hepc tiredness anymore.
Happy Holidays
GHP

GHC
I was undetected at 6 weeks.  I did have an issue at 8 weeks where I had to go without medication for 5 days while they where working out the copay.  It ended up costing me $8,634 out of pocket for the last 4 weeks. The doctor worked through Gilead etc. but in the end I had to pay.  I am now having another issue that my doctor is leaving the practice and had given me notice that I have to find another doctor.  The good news is that I am about 3 weeks from being done.
I am having some joint pain after exercising but think it is normal and not due to the Harvoni.  Are you doing better now?
- Art
Title: Re: Harvoni Side effects
Post by: elizabethfaraone on December 28, 2014, 11:31:17 pm
Art, that's pretty awful that you had to go without for five days.  I hope everything works out.  My thoughts are with you.
Title: Re: Harvoni Side effects
Post by: Roger on December 29, 2014, 03:29:23 pm
I thought I'd pipe in here, as I took my #39 Harvoni pill this morning...

I feel better every day, and the side effects have been "easy" and are getting even easier.  It "is" amazing how we / I took the way I felt (for years) as normal.  I actually didn't know what "feeling good" or "feeling normal" was.  Now that the dragon is on its knees, I have a whole "new" way of feeling.  It is amazing how we take things for granted - until there is actual change! (remember the frog in the pot of water?)

That tired, sick feeling that I had for years, is leaving me - and my joints are really a lot better too.  I think having 80% of my joint pain disappear during this
Harvoni Tx helps "everything" in me feel better.  Before I started Harvoni, I didn't know how much of my creaky bones was "getting old" and how much was the dragon.

Now that the dragon is on its knees, and my joints feel W-A-Y better, I know a lot of my joint pain was the dragon and not my age!  Just that one little bit of knowledge is enough to help a number of 'old age' related things feel better.  I feel pretty young, I must admit.

The Harvoni side effects have been very mild, with some ill stomach that comes & goes; some fatigue - that comes & goes, and a few minor headaches - but really nothing to write home about.  Now that the dragon is dying, the side effects are even easier.  At times I still get a wave of 'tired', even a little ill to my stomach - but not bad and not for very long.  The insomnia that Gilead spoke to me about has been nonexistent too.

I had my 2nd blood test and my liver & kidney functions are excellent!
They forgot to do my VL, so I had that done last Friday and I am waiting for those results.  It is exciting seeing the VL go down to zero!
Title: Re: Harvoni Side effects
Post by: Katie on December 29, 2014, 04:07:26 pm
Roger:  I am on my 26th pill, and like you am feeling SO much better and sleeping through the night.  Just feeling rested is something to cheer about. Before treatment when I did get more than 4 hours, I would wake up exhausted.  My brain fog and ability to concentrate is about back to "normal" and seems to be improving each day.  My tinnitus still comes and goes but when it goes it is almost all gone, but my hair thinning seems to be with me, even though it isn't very much...just noticeable.  That may be due to me not taking my normal supplements as I figured I didn't want to take a chance with something interacting.  I take some Chinese herbs and am not sure about them.  So I am only taking my D3 and Vit Bs.

I am anxious to have my first blood test in a couple days!

I have joint issues too but I doubt Harvoni will help with that as I have worked hard out in the field and just damaged myself, however I'll take any relief it gives, so I am hopeful.

Congratulations on your good health and we are so lucky as some are really suffering.  This has been a breeze for me.  My New Year's wish is for everyone to begin to feel the benefits and have a healthy, virus free 2015!

Katie
Title: Re: Harvoni Side effects
Post by: Doluska on December 29, 2014, 04:22:08 pm
I am praying so hard to be hepc free in 2015 for all of us! And if you asking me - people that invented this medication and made it work deserve Nobel price! We are lucky to live in 21 century.d
Title: Re: Harvoni Side effects
Post by: elizabethfaraone on December 29, 2014, 04:44:25 pm
I AGREE!  The person who developed Sovaldi (sofosbuvir) is Michael Sofia.
Title: Re: Harvoni Side effects
Post by: Katie on December 29, 2014, 04:54:46 pm
Elizabeth,  Is there a contact email where we could thank him?  What a blessing for so many and he certainly deserves to be applauded and recognized!
Title: Re: Harvoni Side effects
Post by: elizabethfaraone on December 29, 2014, 04:58:21 pm
I know he's on linkedin.
Title: Re: Harvoni Side effects
Post by: nicole_1234 on December 29, 2014, 05:17:55 pm
Katie I'm on my 26th Harvoni pill too. I'm feeling much better each day as well. And Roger I agree, I have no idea what it's like to feel "normal" and can't wait to find out. These drugs are a push and pull of sorts, I feel the burden of the Hepatitis disappear as my viral count goes down, but then I still feel medicated and edgy from the drugs. It's hard to say what's what. But the blessing perhaps is that we are all so aware of our bodies and when we do beat this once and for all we will be so grateful and realize not only the bad days but the good days too, when we are full of radiant health!

I started taking anti anxiety drugs after week 2 to calm down at night because I was so edgy I was having panic attacks. I want to get off them now because they make me sleepy in the daytime. It's a coin toss right now, panic attacks or grogginess.  I think I will try without again and perhaps the edginess of the Harvoni has worn off as my body adjusts.



Title: Re: Harvoni Side effects
Post by: Katie on December 29, 2014, 05:38:06 pm
Nicole, I am so glad to hear you are doing better.  For years I have pushed myself to stay active in spite of my fatigue and exhaustion.  I have arthritis from previous injuries in my wrists and right knee and last summer I painted the siding on my entire house with a knee brace and wrist braces!  I am proud of that and the exercise did me good, but it was a battle each day tackling it. 

What is rather strange is now that I am feeling so much better, my motivation is gone.  I really think Harvoni is giving me a "what the heck attitude", and you know, it doesn't even bother me (which is really strange).  I think my body just wants to heal and so all of the half done projects can just wait. 

I am sorry you still have anxiety and hope that goes away soon.  I was anxious before the treatment and would get shaky but that feeling is gone.  Keep up the fight and focus on the positive and know you aren't alone.

Katie
Title: Re: Harvoni Side effects
Post by: nicole_1234 on December 29, 2014, 05:52:37 pm
Thanks Katie. Yeah I'm like you, I think I over did it all the time with something to prove to myself, and not let the illness get the best of me. I'm one of the most active, ambitious people I know. But I always felt like I was walking through spiderwebs in my head, so to speak.

But now that I'm on the treatment I am taking time to heal and rest and be ok with it. I'm still getting lots of stuff done, just not in manic mode. Taking time to rest when I need. It's a great excuse and hey, it's the holidays! It's good we're kind to ourselves now and try to take it easy. Hopefully its the last hurdle on our way to vibrant health!
Title: Re: Harvoni Side effects
Post by: Katie on December 29, 2014, 06:52:16 pm
Nicole: I think when you see no cure in sight for a chronic illness you either give up and go to a dark place or fight like hell and like you said, prove to yourself it isn't going to control your life.  I have always been self sufficient and I refused to crumble, but it was a battle every day.  Having this treatment come along was exactly what I was waiting for and thrilled that I lived to see it and benefit from it.  It gives me so much hope for other horrible chronic illnesses.  I LOVE SCIENCE, and that's why I am a biologist!

Thanks for sharing and have a great evening.  Don't worry, be happy (my theme song lately!  <BIG SMILE>

Title: Re: Harvoni Side effects
Post by: nicole_1234 on December 29, 2014, 11:54:57 pm
Since I started Harvoni, i've fallen off my usually pretty consistent exercise program, 3 long hikes and 4 or 5 yoga flow classes a week. I've been taking short walks with my dog 20 minutes or so and find myself short of breath and even small amounts of exercise seem hard. Today I tried an iyengar yoga class (not a lot of fast movement) and found myself getting dizzy with even the slightest amount of exertion. The kind  of dizzy where I feel I have to sit down and my hands begin to tingle and my eyes go blurry.

Should I get my blood pressure checked when I go for my blood tests tomorrow? Has anyone else experienced this? I will of course talk to my RN about it as well.
Title: Re: Harvoni Side effects
Post by: visoianu on December 30, 2014, 12:15:25 am
Update:
Diagnosed with hepC about 1-1/2 years ago. Probably born with the virus or acquired before age 10. Started Harvoni 8-1/2 weeks ago.
Viral load:
256000   July 2013
496000   Oct   2014
59            November
Not detected today (i.e. <15)
From my experience, the best time to take this medicine is in the afternoon. This is because I have the impression that, in this way, the medicine spends more time in the system and is more effective. First 4 weeks I took it in the morning, when my digestion is very fast.
Then I changed to afternoon and I could feel it is more effective.
About the blood pressure, I think this medicine contributed to its increase. I had it under control with medication before starting Harvoni. Then it increased significantly.
The nightmares are occurring only once or twice per week now. For me this is a sign that I am more tired than usual.
Title: Re: Harvoni Side effects
Post by: Katie on December 30, 2014, 12:29:13 am
I would definitely have your BP checked and explain what is happening to your doctor or nurse.  Could the anti anxiety drugs have anything to do with it?  I get worn out faster with any exertion too, than I did before.  Be sure you are eating good and keep drinking that water.  Maybe take even shorter walks but a couple during the day.  My day consists of taking breaks about every half hour because otherwise I just feel tired. So I do a little and take a break and then do a little more.  I've just been pacing myself and then I get more done.  If I push myself I end up being done for the day! 

I take my pill at 8:30 at night and have been sleeping really well and actually wake up refreshed.  I figure it gives the drugs time to work while I am resting and they haven't bothered, but seem to actually help, my sleep.

Let me know how it goes tomorrow!  Good luck!

Katie
Title: Re: Harvoni Side effects
Post by: art1951 on December 30, 2014, 08:32:12 am
Since I started Harvoni, i've fallen off my usually pretty consistent exercise program, 3 long hikes and 4 or 5 yoga flow classes a week. I've been taking short walks with my dog 20 minutes or so and find myself short of breath and even small amounts of exercise seem hard. Today I tried an iyengar yoga class (not a lot of fast movement) and found myself getting dizzy with even the slightest amount of exertion. The kind  of dizzy where I feel I have to sit down and my hands begin to tingle and my eyes go blurry.

Should I get my blood pressure checked when I go for my blood tests tomorrow? Has anyone else experienced this? I will of course talk to my RN about it as well.

Nicole,
I would definitely watch the blood pressure but you are right about at the point where I started to get more energy.  I am sure that it is not the same for everyone but it was around week 6-8 when I actually started feeling 'normal' again with energy that didn't come and go in spurts.  Hang in there.  You are almost there.

Art
Title: Re: Harvoni Side effects
Post by: elizabethfaraone on December 30, 2014, 08:40:46 am
Art,

Thanks.  I needed to hear that too.  I just completed my fourth week and I'm still feeling lousy.  It worries me when I hear others say they're feeling great by the second week.  I had my blood drawn yesterday and will know my viral load soon.
Title: Re: Harvoni Side effects
Post by: BattleTheBeast on December 30, 2014, 09:27:31 am
Art,

Thanks.  I needed to hear that too.  I just completed my fourth week and I'm still feeling lousy.  It worries me when I hear others say they're feeling great by the second week.  I had my blood drawn yesterday and will know my viral load soon.

Hi Elizabeth,

Check out my posts, I think I am the queen of bad days. What's important to remember is that if we were sick before with Cirrhosis issues/symptoms they aren't going to just go away (I sure wish they would). The medications are very strong and they add another level of a war inside of us. Hang tight warrior sister, you made it this far and you are on treatment, that's huge! I wasn't UD at week 4 and was all bummed but everyone is different and we all have our own battle albeit with the same monster.

I am almost 12 weeks into treatment now, I started with S/O and was switched to Harvoni after 8 full weeks. When I had my blood work at 9 weeks I was Undetected and my AST and ALT were normal. I have good days and I have not so good days but if/when I can clear the virus then I will continue to work on being as healthy as I can be without the beast inside me. They say the liver is the one organ that can heal itself, let's hope that's true and we can all live long and healthy lives after SVR.

Keep smiling, 2015 is going to be the year of SVR!

Mel
Title: Re: Harvoni Side effects
Post by: elizabethfaraone on December 30, 2014, 09:35:16 am
Mel, are you genotype 1a with q80k polymorphism?  Apparently, olysio doesn't work for those with q80k polymorphism.
Title: Re: Harvoni Side effects
Post by: BattleTheBeast on December 30, 2014, 09:50:39 am
Hi Elizabeth,

I am not sure if I have the q80k polymorphism but I am going to my doctor tomorrow and can ask to have the test run tomorrow if he feels it will be helpful.

From what I am reading about it, it's not that it doesn't work, it's that it doesn't work as well:

http://hepatitiscnewdrugresearch.com/olysiosimeprevir-resistant-variant-q80k.html (http://hepatitiscnewdrugresearch.com/olysiosimeprevir-resistant-variant-q80k.html)

I had a horrible rash and did not tolerate Olysio very well which is why I was switched to Harvoni, looks like as more data comes out this was possibly a good move if I do have q80K.

Thanks for the information,

Mel

Title: Re: Harvoni Side effects
Post by: elizabethfaraone on December 30, 2014, 10:00:21 am
Mel, yes, you are correct, it doesn't work as well ... and we should take what works the best
Title: Re: Harvoni Side effects
Post by: BattleTheBeast on December 30, 2014, 10:48:06 am
That's true but what is best is evolving as we go, we are the pioneers here.

BTW Elizabeth, if you are in Plainfield we are almost neighbors, I am down in the Princeton area. Are you seeing an ID doctor?

Mel
Title: Re: Harvoni Side effects
Post by: elizabethfaraone on December 30, 2014, 11:00:40 am
I'm seeing a gastroenterologist who is very sweet and serves the poor and loves them and fights for their right to the medicine.  If not for him, I wouldn't be on the Harvoni.  I spent a year trying to get Sovaldi/Olysio.  But, in the end, it's good that I'm on the Harvoni instead.  I do wonder if Sovaldi/Daclatasvir works for every genotype.  I wanted that combination as soon as it proved effective at Pharmasset in Princeton.
Title: Re: Harvoni Side effects
Post by: elizabethfaraone on December 30, 2014, 11:03:52 am
Remember this?  http://hepatitiscnewdrugs.blogspot.com/2012/11/daclatasvir-and-sofosbuvir-promising.html
Title: Re: Harvoni Side effects
Post by: Jay on December 30, 2014, 02:15:53 pm
I'm loving Harvoni! 4 weeks down, and, with a little luck, only 8 more weeks to go.  I just take one before bedtime and seem to have more energy throughout the day. I am very hopeful that, after 30 years, I am, finally, likely to be able to put this behind me. (But I am glad I waited, the inteferon had previously scared me off of treatment)
Title: Re: Harvoni Side effects
Post by: Subwayco on December 30, 2014, 04:19:35 pm
Hi Nicole,

I must have missed your post when checking out the group postings.  I showed my wife your post and she looked at me and said "That's you".  I'm 66 now and I thought that the brain fog was a Hep-c condition but I also thought about maybe it was just the thing you go thought when getting old .  I was also a good speller but now sometimes when I write on the computer I make numerous errors. Spell check has become a close friend.  It's true when you find some experiencing the same things as myself it is in some ways comforting.  I'm at the beginning of my 7 week and all numbers are normal according to my blood test two weeks ago.

Hope you had a nice Christmas if you celebrate it!  I learned a lesson last week that I should have figured myself.  At a Christmas eve group dinner I was so excited and was all over talking to those who had attended!  I was feeling fine but at 9.00 I was suddenly very fatigued and went home and just fell immediately asleep.  Then I realize the logic I should have known.  Just because you might have cleared the virus doesn't mean your going back to being superman.  Your liver has been greatly impacted.  Even close friends couldn't understand.  But, that is the story, your cured from Hep-c but the damage to the liver is going to take a while to erase.  I guess that's why I though the medicine might not work because I didn't feel that it was.  In my case I have been told I have cirrhosis so I figure it's going to months and possibly years to really start to feel better. 

I hope you are doing well and I hope our brains snap out of it.  It can as you know be quite embarrassing.

We'll see where this road goes!

Take care,
Rob - Subwayco

 
Title: Re: Harvoni Side effects
Post by: audreywald on December 31, 2014, 11:59:16 pm
Hi Everyone. I am starting Harvoni tomorrow. The pills came today but I had already taken my antacids. Anyway, I'm a little nervous. Can anyone tell me what the beginning is like? My viral load is over 15 million and I've had it for about 40 years; I think my good years (meaning not too bad) are running out. Any advice at all?
Title: Re: Harvoni Side effects
Post by: audreywald on January 01, 2015, 12:18:04 am
You can't know what this means to me. 2014 was the worst year of my life, On Nov. 29th. my then 21 year old grandson disappeared. Left his money, his keys, his ATM card, door unlocked and was just ... gone. If you Google his name you will find out all about him; Lucas Prassas. I raised him and I spent at least 6 months in bed, not really sure if I wanted to live.
But getting this medicine, so easily and free, and not having to do any of the work gives me hope. I really did not think I would  live to  see this day. So maybe, just maybe there is a reason to keep fighting the dragon. Maybe I am supposed to be on this earth a little longer. Maybe my boy is still alive and I will be around to see him.
Starting meds tomorrow. January 1st. Sounds a little hopeful, right?
Title: Re: Harvoni Side effects
Post by: Katie on January 01, 2015, 12:57:45 am
Audrey, Everyone reacts a bit differently and it seems to depend on your overall health and your liver condition as to the side effects.  All in all, no one is really complaining about the side effects as it is so much easier than the previous treatment.  Take it easy, rest when you need to, and think positive thoughts.  I am sorry for all of your sadness and hopefully 2015 will turn out to be a good year for you.  Harvoni is a miracle drug, and for me, I started to feel better almost immediately.  We are so lucky to have this breakthrough in time for us and for millions.  Celebrate your good fortune and keep praying for your boy.  When he comes home, he's going to find you in good health!  Wouldn't that be wonderful!!!

Katie
Title: Re: Harvoni Side effects
Post by: Dragon70 on January 01, 2015, 01:43:48 am
Hi Elizabethfaraone,

Awesome post and diary you are keeping! I would tell you that you will feel better soon but I am not the one you should ask!

Keep hanging tough and doing exactly what you are doing, listen to your body and continue to be kind to it!

Hey Papa,

This is what happens when you don't sleep for 3 days, you get manic like I am right now............ I must stop and calm myself. I really need sleep. Oh and I have no interpersonal relationships right now because I am in hiding for my own well being and I love my family and friends to much to subject them to often to this Mel. For the clutter and cleanliness, I have my cleaning friend coming weekly just because I was sick before treatment even started so I knew I couldn't handle it alone with the teenage boy! But it really does feel better when the house is more organized.

And you will be ok no matter what, Harvoni is a cake walk, except my cake was made in an easy bake oven. Cake Boss is making yours!

Mel
Title: Re: Harvoni Side effects
Post by: Dragon70 on January 01, 2015, 01:45:40 am
I am getting a rash. I noticed that it was one of the more severe reactions. Can anyone tell me why this is such a big deal and why I should report it asap. I don't want to get off of the Harvoni for a rash. I'm doing great otherwise.
Dragon70
Title: Re: Harvoni Side effects
Post by: BattleTheBeast on January 01, 2015, 02:02:21 am
Hi Dragon,

Just let your doctor know. I think they mean the kind of rash where your tongue and throat swell and you can't breath.  People get that from bee stings and peanut butter! I have lived with the rash and it comes and goes. I haven't figured out what exactly triggers it but my doctor checks it out and I take a benedryl if it gets really bad. There are other options as well.

If you are still breathing fine and you aren't having a severe allergic reaction just let your doctor know about it and have him/her check it out for you.

Mine starts as these bumps under the skin and then the itch starts! I keep my skin moisturized, use oatmeal soap and avoid long hot showers when it flares up.

I've been told it's ezcema, it's allergies, it's from the cirrhosis but I have been dealing with it a while. It got way way worse for me when I was on the Solvaldi and Olysio combo.

Hope that helps a little. HNY!

Mel
Title: Re: Harvoni Side effects
Post by: Rubye on January 01, 2015, 02:29:52 am
It seems to me that skin problems go with cirrhosis. I've had rosacea for a few years now but what's interesting is about two weeks in with the Sovaldi/Olysio my face cleared right up. I had the itching too, like Mel started as little bumps under the skin, but I would rub in a lot of Eucerin Calming lotion every hour or so and it quit. Plus, with the cold weather most of us have to stay well lubricated regardless. :)
Title: Re: Harvoni Side effects
Post by: Lynn K on January 01, 2015, 06:14:50 am
This was all I could find on rashes

http://www.drugs.com/sfx/harvoni-side-effects.html

Seek medical attention right away if any of these SEVERE side effects occur while taking ledipasvir / sofosbuvir:
Severe allergic reactions (rash; hives; itching; difficulty breathing; tightness in the chest; swelling of the mouth, face, lips, or tongue).

To me it doesn't sound like itching and a mild rash is much of a concern but when in doubt ask your doctor is always best.

Happy New Year
Title: Re: Harvoni Side effects
Post by: elizabethfaraone on January 01, 2015, 09:16:10 am
Hi Audrey.

I'm so sorry about your huge loss and my heart hurts for you.  Life can be so hard.

I'm very sensitive to medicine in general and Harvoni is easy for me to take, so long as I rest all of the time.  I'm so happy to have this medicine.  For the first two weeks, I took Tylenol as a preventive measure with the Harvoni at 9 am and then I stopped taking the Tylenol.  It's important to eat well during treatment, I think, in order to minimize any side effects.

Bring as much joy into your life as you can.  I watch good movies and read good books to raise my spirits and I spend time with people I love.  Don't be afraid to ask people for help.
Title: Re: Harvoni Side effects
Post by: elizabethfaraone on January 01, 2015, 10:03:41 am
Audrey, I get the feeling that your grandson loved you very much and if he met an early death, he would want you to take the best care of yourself.  He lived a full life with you as his caretaker and he learned a lot.  Although he was a lonely fella, there was much that he loved about his life.  It is always sad when we lose someone we love a lot.  There was a special bond between the two of you and so it will be hardest for you to recover from.  Just remember that he loved you very much.  I know that for sure.  You were his heaven on earth.  One of the things you are missing about him is how he totally accepted you, whether you realize it or not.  Don't let anyone's opinions get in the way of feeling the love he had for you - his acceptance of you.  Love never dies, and remember his love for you will always be.  I've lost my mother, father and younger sister, and they suffered when they were dying.  Their death was a relief from their suffering.  And they are still with me.  There are many planes of existence and it is important to know that when we are separated from the ones we love (be it because they live somewhere else or they have left this earth), they are always a part of us - always with us.  https://www.youtube.com/watch?v=MRHN7nUg26M
Title: Re: Harvoni Side effects
Post by: mario555 on January 01, 2015, 04:28:02 pm
7 weeks in a 24 weeks treatment. My side effects are incredible! I asked my wife to go to a new year party. I had been too tired to go to anything for many years! She flipped! Although I didn't last until midnight, I danced, ate, had 1/2 glass of wine. I almost felt like anyone else! Also, I have been bugging her to go for long walks and today I went to the gym (only 20 minutes though...). This is proof that something has changed! My headaches are almost gone and except for a hearing problem, I feel 10 (15?, 20?)years younger!
My message? If you are hesitating on taking the treatment, don't! This is a frigging miracle!
My wife saw me during 2 unsuccessful Int-Rib treatment and she can't believe what's happening with me!
I am 59 years old, F4, 1a, and I have been carrying the disease for 45 years. Before starting the treatment, I was at the end of my overstretched rope and I was losing hope rapidly. So, miracles DO HAPPEN! my 4 weeks alt,  ast were still at 90 but... I have many more weeks to have the miracle continue.
Good luck to everyone and don't hesitate to get started on the treatment!
Title: Re: Harvoni Side effects
Post by: Lynn K on January 01, 2015, 04:37:25 pm
Hi Mario

Congratulation on feeling so much better!

I don't want to rain on your happiness but you really should not drink alcohol at all ever again for he rest of you life. You have F4 i.e. liver cirrhosis you said. Also you are currently on treatment and should not drink on treatment anyway.

Even if you cure hep c you will still have cirrhosis which means you can't drink alcohol ever.

But anyway again congrats go dancing in the streets enjoy you renewed energy and have a long and healthy life
Title: Re: Harvoni Side effects
Post by: Doluska on January 01, 2015, 07:25:05 pm
I wouldn't drink during the treatment! Why risk so disiairable SVR? But in case of success - I'd allow myself a seep of shampain on New year eve. It is not a big deal! Have a happy and healthy year everybody! D
Title: Re: Harvoni Side effects
Post by: mario555 on January 01, 2015, 08:07:40 pm
Actually, the main emphasis of my message was to appease the fear of the hep c sufferers who might hesitate to consider getting treated because of side effects. For us previous interferon riba patients, we were very leary about this new medication. My message was more about the (almost) immediate benefits of this medication.
The 1/2 glass of wine over a 4 hour outing at new year eve was definitely not my best advice. Sorry for that.
Title: Re: Harvoni Side effects
Post by: audreywald on January 01, 2015, 08:09:15 pm
Audrey, I get the feeling that your grandson loved you very much and if he met an early death, he would want you to take the best care of yourself.  He lived a full life with you as his caretaker and he learned a lot.  Although he was a lonely fella, there was much that he loved about his life.  It is always sad when we lose someone we love a lot.  There was a special bond between the two of you and so it will be hardest for you to recover from.  Just remember that he loved you very much.  I know that for sure.  You were his heaven on earth.  One of the things you are missing about him is how he totally accepted you, whether you realize it or not.  Don't let anyone's opinions get in the way of feeling the love he had for you - his acceptance of you.  Love never dies, and remember his love for you will always be.  I've lost my mother, father and younger sister, and they suffered when they were dying.  Their death was a relief from their suffering.  And they are still with me.  There are many planes of existence and it is important to know that when we are separated from the ones we love (be it because they live somewhere else or they have left this earth), they are always a part of us - always with us.  https://www.youtube.com/watch?v=MRHN7nUg26M

Title: Re: Harvoni Side effects
Post by: audreywald on January 01, 2015, 08:20:33 pm
I don't feel that Luke is deceased. I did at first but he has been missing since November 29th, 2013. I think if he were deceased someone would have found or even smelled something by now. We live in a small town called Wynne, in Arkansas. He knew I was ill and it scared the hell out of him; what would happen to him when I died. Luke is bi-polar and on the autism spectrum. I am not saying he has no feelings but he does not think like neurotypical people. In other words, much as he loves me he could leave me just like that. I know he felt he was a burden to me. He could be very difficult; but he was always my greatest joy; the love of my life. No one that knew him well thinks he is dead. That does not mean I will see him again but one reason I decided to try any meds again was in the hope of buying myself some quality time. For my other 2 grandsons, my husband and my daughter. Thank you for your feedback though. I appreciate any and all kindnesses.
Title: Re: Harvoni Side effects
Post by: Lynn K on January 01, 2015, 10:00:04 pm
Hi Mario

Sure I understand your thoughts trying to reassure people that treatment is not a big deal and super happy for you that you are feeling great!

You just had me worried when you made the remark about a 1/2 glass of wine. I too looked longingly at having a sip of Champagne but my better half said not gonna happen which is for the best so I toasted the new year with sparking Apple juice.

Ah well it is what we must do if we want to hang around the planet for a while longer.

Best to you and yours Happy New year
Lynn
 
Title: Re: Harvoni Side effects
Post by: pappy on January 02, 2015, 02:42:08 pm
Well one week in I must say the side effects are ever present but not bad . Mostly a mild headache but if you eat the wrong foods you can have some nausea . The energy level does certainly go up and i am very happy to be be trying to get past this . Good luck to everyone and I hope it is a happy new year to all .
Title: Re: Harvoni Side effects
Post by: sunrise on January 02, 2015, 11:07:10 pm
Hi warriors
      Hope its ok to crash the Harvoni party. I feel like  a misfit just finishing sovaldi olysio 12 weeks. I did not know if I had the Q 80 morphism. Studies show that sovaldi cacelled this out. Now if I relapse l ( I pray not) then I will think maybe there is a chance. Gratefully I , if necessary will do the Harvoni treatment.  Im off tx now since dec 21 . Still have aches in ankles, also stiff in morning. Never was this bad before tx. Hope it subsides. Still waiting for eot results . Holidays must have delayed. Getting 4 week  after tx test done jan 19. Countdown. Thanks for letting me crash :-) Sunrise. Took the S/ O train woo woo!
Title: Re: Harvoni Side effects
Post by: Roger on January 02, 2015, 11:34:27 pm
Sunrise,

I too am taking Harvoni, and know nothing about the side effects of sovaldi / olysio.
Would you mind explaining the side effects of that Tx?
Title: Re: Harvoni Side effects
Post by: sunrise on January 02, 2015, 11:49:26 pm
Sure. Remeber though everyone reacts alittle different.  1st week just little tingles intermitently on skin. Random and not painful.2 nd week appetite started increasing. Started to get anxiety come on strong towards afternoon. That stayed til done. Just now starting to subside.developed lump on Achilles tendon with stiffness and pain. Appetite continued to be on the rise thoughout treatment.  35 lb weight gain aaah! Became UD 4 weeks in. Waiting for eot results
 My bilirunin elevated slightly and my blood pressure as well.working on good diet now and still sore. Other than that im getting thru. Still have side pain on and offf......blessings Sunrise
Title: Re: Harvoni Side effects
Post by: Roger on January 02, 2015, 11:53:36 pm
WOW! Way different side effect vs Harvoni.
I don't really understand why a doctor would prescribe anything but Harvoni.
Thanks.
Title: Re: Harvoni Side effects
Post by: badbradley on January 03, 2015, 12:02:23 am
Roger,
        Also treated with S/O. Intermittent headaches were the norm for about the first 4 wks. Olysio caused some sun sensitivity eyes sensitive to bright light, minor nausea. Thigh and glute pain,joint pain - on and off. Dry mouth early on. My mouth felt like it had been burned from hot liquids, lasted for about 1 wk. Heard this from a few others as well. That's about it for me. All is well after 7 wks post treatment.
                                                                           Brad
Title: Re: Harvoni Side effects
Post by: sunrise on January 03, 2015, 12:14:11 am
Harvoni hadnt been approved yet and doc felt.I should start tx as my inflammation was rapidly increasing.  Figured if s/o didnt work then other options were coming. Really side effects were tolerable half of my treatment is also part of yours. To get rid of this serious disease I was gonna give it a shot. Puts the older txs to shame....Sunrise
Title: Re: Harvoni Side effects
Post by: Lynn K on January 03, 2015, 01:05:36 am
I also treated with Sovaldi Olysio from March to June 12 weeks unfortunately I was found to have relapsed at my 12 week post viral load tests.

I didnt have much in the way of sides. I maybe had some of the warned sun sensitivity and some mild headaches. I may have had some extra joint pain in my knees where I already had some issues. But that is all.

I will be finishing week 7 on Monday with 17 weeks to go on Harvoni. I should be taking my last pill May 4th.
Title: Re: Harvoni Side effects
Post by: elizabethfaraone on January 03, 2015, 06:30:08 am
Sunrise, thanks for crashing the party and for being honest.  I'm taking Harvoni now and tried to get the Sovaldi/Olysio combination, but was refused.  I refused treatment with Interferon/Ribavirin prior to Pharmassets success over three years ago with what we now call Sovaldi/Daclatasvir and I was chomping at the bit for Sovaldi.

It is important that we document our side effects during treatment and what recovery feels like after treatment.  I've heard that Sovaldi stays in our bodies for three months after treatment, but I don't know if this is true.  I do know that when I tried Interferon/Ribavirin in 2003 (I stopped after the first shot because side effects were so severe and dangerous for me),  I felt the horrible side effects for three months afterwards.  Yikes!  That was a very scary time for me.

I have gained a lot of weight with Harvoni.  I think this happens when taking antivirals because the same thing happens to me when I take acyclovir for shingles - I gain weight.

Thanks again and keep posting here.
Title: Re: Harvoni Side effects
Post by: Doluska on January 03, 2015, 06:33:02 am
I started my S/O treatment on  October, became undetected on 4 th week , finishing in the mid January. My appetite went up a lot, and I gained weight, I am tiered at the end of the day and my heart isn't working properly, but it was compromised before. This is nothing if I would get SVR. And actually I am happy having Harvoni as a plan B, if this treatment will not be successful. Good and happy year ahead of all of us! Oh, forgot about anxiety leve, it was up and is still up, antidepressant helps a lot.
Title: Re: Harvoni Side effects
Post by: Roger on January 03, 2015, 02:09:04 pm
Now that Harvoni is approved, are doc's still prescribing the other treatments?
Title: Re: Harvoni Side effects
Post by: elizabethfaraone on January 03, 2015, 02:19:02 pm
I don't know, but the medical industry certainly did push the toxic meds immediately following the success of sofosbuvir/daclatasvir over three years ago - lots of advertising advising people to get tested and cured - guess they wanted to sell their medicines before they became defunct.
Title: Re: Harvoni Side effects
Post by: Roger on January 03, 2015, 02:43:34 pm
Can you imagine what it's like for those companies that own patients like Olysio which is now all but obsolete? With the advent of Harvoni, it seems like ALL competition is defunct.  Hopefully Harvoni won't have adverse effects (think thalidomide) down the road!
Title: Re: Harvoni Side effects
Post by: elizabethfaraone on January 03, 2015, 02:47:52 pm
we won't know until time passes
Title: Re: Harvoni Side effects
Post by: Roger on January 03, 2015, 02:54:33 pm
Exactly!  That's the point... we rush to the cliff with hopeful enthusiasm - 'believing'.
Title: Re: Harvoni Side effects
Post by: Doluska on January 03, 2015, 03:09:01 pm
I will be grateful to Jansen ( Olysio) till the end of my life, because they donated me 12 weeks supply of pills, delivered it to my home, asking nothing from me! Even it will be no success, it is very generous. Gilad is kind of " imperialist- shark", they don't give nothing for free, well, at list, for Canadians. It is different story for Canadians: people dying  here, if they don't have insurance. Literally dying.... Sad. And no marcy from government, no from Gillad. Harvoni- yes, bravo! And I hope that if I will need it I will be able to afford it with help of insurance or by myself... For now- thank's for Olysio.d
Title: Re: Harvoni Side effects
Post by: Roger on January 03, 2015, 04:03:27 pm
Gilad is kind of " imperialist- shark", they don't give nothing for free, well, at list, for Canadians. It is different story for Canadians: people dying  here, if they don't have insurance. Literally dying.... Sad. And no marcy from government, no from Gillad.

Doluska,

I understand what you mean.  If you don't mind explaining the Canadian insurance situation I appreciate it. I was under the impression that all medical is covered by the Canadian government health plan.  Not so?  How does it work there?

As a Canadian, you might want to Google 'gilead momentum'.  Read up on how Gilead can help in Canada. I 'thought' they had a program in Canada somewhat similar as they do in the states.  I have not read a lot about it - but you can. I'd like to hear back what it's all about. (and about your government health plan & HCV Tx).
Title: Re: Harvoni Side effects
Post by: sunrise on January 03, 2015, 04:24:02 pm
Thanks Elizabeth
    Nice to feel wanted. As a recipient of Solvaldi and Olysio completely paid for by Gilead and Janssen, I feel very grateful and so lucky to have gotten treatment at F1 . Whatever happens I as well have no animosity towards these cos. Hopefully soon this will not be a problem of affording or not. I was so scared I would be turned down. To my surprise I got both meds!
    In closing I understand a company needs to get paid, but playing with lives should not happen. Everybody should be treated period. IMO
Title: Re: Harvoni Side effects
Post by: Doluska on January 03, 2015, 05:07:55 pm
Hi again! Thank u for asking. Situation is like this: health Canada paying for hospitals, doctors visits and medicine, while u are in hospital. That's all. Prescribed medication, dental and some special treatments - u are on your own. If u lucky to have insurance- they will cover some of your expenses, if not - sorry, it is not our business. this is it. Most of the working people do have insurance, but poor, homeless, drug addicts, stupid people who has work, but didn't bother to get insurance, sick people on disability - meet the sucamstenses of death penalty if they have pleasure to have Hep C. Sad. About Momentum... If one pay cash -$  85.000 for Harvoni- they may give u 20% of it. It is not bad when one has the rest. If not - nothing, nil, zero. In Canada they approved all new meds for hepC 3-4-5 months later than US. When people started Harvoni in States - it wasn't approved here. It took 4 months for approval with all this - I consider myselth very, very lucky to live in Canada, to be able to get new medicine anyway, even with all difficults that I was meeting on my way to get them. And I am looking forward for cure. Be happy and healthy - this is what we all aiming for. D.
Title: Re: Harvoni Side effects
Post by: CHepCFree on January 04, 2015, 08:44:05 pm
Finished 4 weeks of Harvoni and preparing for blood test tomorrow.   Side effects to date have been ringing in my ears, that is driving me crazy, some sleepless nights and a digestive system that is not working all that great, i.e. BM's are minimal.  I've read on these posts side effects that are not listed on the Gilead site and thus would recommend that everyone....no matter what your side effects..to report them to Gilead.   They don't know unless you tell them and we need to help our fellow heppers understand they are not alone in some of these side effects.   I saw someone here had tinnitus (ringing in the ears) for six weeks and then it stopped but there are so many posts, I can't find it any more.   If anyone is or has experienced that would love to hear from you.   thanks
Title: Re: Harvoni Side effects
Post by: Katie on January 04, 2015, 09:00:42 pm
Hi CHep..I had tinnitus prior to treatment and figured it was because of a long term sinus infection I had about 12 years ago.  When I first started Harvoni the first several days the mild ringing went to LOUD static noise, like a TV and it was horrible. Then a miracle occurred, I had NO noise whatsoever for 2 days.  The first silent, clear eras in 12 years.  Unfortunately it returned but is sometimes almost gone, so I think the medication definitely affects it.  Since I had it previously it is hard to say, but am keeping my fingers crossed it may go away for me.  My side effects have been mostly positive which I have mentioned on my other posts.  One negative is my hair is definitely thinning as I am shedding much more than usual.  Not that big of deal...yet and I have had other unrelated medication cause that in the past (for gallbladder) and when I stopped it, my hair thickened up.  The only other thing is my motivation is gone and I figure even though I am feeling 100% better now I just don't feel like doing much.  That is totally out of character as I have always been known for taking on and completing big projects.  I just figure I need to let my body heal, and those project will wait for me.

I just had my first 4 week blood work done and will find out the results on Thursday.  I am really looking forward to it as I am feeling better (and looking better too) than I have in years, so the results have to be positive.  We will have to compare notes, and good luck to you.  Everyone seems to react a bit differently as there are so many variables.

Katie
Title: Re: Harvoni Side effects
Post by: Roger on January 04, 2015, 09:10:28 pm
Finished 4 weeks of Harvoni and preparing for blood test tomorrow.   Side effects to date - BM's are minimal.  I've read on these posts side effects that are not listed on the Gilead site and thus would recommend that everyone....no matter what your side effects..to report them to Gilead.   

Free,
Good advise about people reporting to Gilead!  Their clinical study was small compared to all the guinea pigs out there using their Tx now.

Regarding the constipation, I too experience that.  Gilead mentioned diarrhea, but that has not been my situation.  To counteract the constipation I eat about 7 dried plumbs in the morning, 3 or 4 during lunch and 7 around dinner time.  That seems to take care of things the next day.  Before I figured that out, it was pretty dismal.  Plums are cheap, and good for you.  Give it a try.
Title: Re: Harvoni Side effects
Post by: CHepCFree on January 04, 2015, 10:11:58 pm
Free,
Good advise about people reporting to Gilead!  Their clinical study was small compared to all the guinea pigs out there using their Tx now.

Regarding the constipation, I too experience that.  Gilead mentioned diarrhea, but that has not been my situation.  To counteract the constipation I eat about 7 dried plumbs in the morning, 3 or 4 during lunch and 7 around dinner time.  That seems to take care of things the next day.  Before I figured that out, it was pretty dismal.  Plums are cheap, and good for you.  Give it a try.

I hope people call Gilead.  You are right that trials were small.  We are thr rel test cases.   

Yep finally bought some prune juice and found some tea with senna which is an herbal laxative.  May try some actul plums.     Thanks.   
Title: Re: Harvoni Side effects
Post by: CHepCFree on January 04, 2015, 10:17:13 pm
Hi CHep..I had tinnitus prior to treatment and figured it was because of a long term sinus infection I had about 12 years ago.  When I first started Harvoni the first several days the mild ringing went to LOUD static noise, like a TV and it was horrible. Then a miracle occurred, I had NO noise whatsoever for 2 days.  The first silent, clear eras in 12 years.  Unfortunately it returned but is sometimes almost gone, so I think the medication definitely affects it.  Since I had it previously it is hard to say, but am keeping my fingers crossed it may go away for me.  My side effects have been mostly positive which I have mentioned on my other posts.  One negative is my hair is definitely thinning as I am shedding much more than usual.  Not that big of deal...yet and I have had other unrelated medication cause that in the past (for gallbladder) and when I stopped it, my hair thickened up.  The only other thing is my motivation is gone and I figure even though I am feeling 100% better now I just don't feel like doing much.  That is totally out of character as I have always been known for taking on and completing big projects.  I just figure I need to let my body heal, and those project will wait for me.

I just had my first 4 week blood work done and will find out the results on Thursday.  I am really looking forward to it as I am feeling better (and looking better too) than I have in years, so the results have to be positive.  We will have to compare notes, and good luck to you.  Everyone seems to react a bit differently as there are so many variables.

Katie

Sorry to hear about hair loss.   Recommend you report this to Gilead.  Now that you mention no motivation, I am observing that recently.   Hopefully all this little challenges wiil disappear after 8/12/24 weeks.  I'm a 12 week tour. And of course, let our big challenge be gone!
Title: Re: Harvoni Side effects
Post by: Katie on January 04, 2015, 11:48:39 pm
You might want to check with your doctor on Senna.  It is hard on your liver, from what I've read.  I bought a bag of flax seed and cook it along with rice or oatmeal and that works really well too.  Eat lots of green veggies and maybe fiber such as Metamucil to stay regular.  As long as I eat a couple fruits a day and some high fiber cereal etc, I am fine but if I miss a day, I can tell.  Prunes are great so you may not need anything else.

I'm not going bald, or anything drastic but it is definitely noticeable and am glad the treatment is only 12 weeks!  I'm not panicking yet.  HA!
Title: Re: Harvoni Side effects
Post by: Katie on January 05, 2015, 12:17:17 am
It looks as if senna is a problem after long term use but since our liver is healing and already compromised I wouldn't use it.  Check this out and there is lots of other info if you just Google senna liver.  I'd definitely ask your doctor if you are planning to use this daily.

http://www.nlm.nih.gov/medlineplus/druginfo/natural/652.html#Safety
Title: Re: Harvoni Side effects
Post by: goodbyehepc on January 05, 2015, 12:58:26 am
Isn't it amazing how complicated data can be? Add in emotions and opinions, and we can have a field day! I looked at the data too, and wondered what I'd do if I was a clinician, or what I'd be concerned about if I was a patient. I can see the argument for extending the treatment to 12 weeks for GT 1a VL < 6 mil. (see table 6 http://www.gilead.com/~/media/Files/pdfs/medicines/liver-disease/harvoni/harvoni_pi.pdf (http://www.gilead.com/~/media/Files/pdfs/medicines/liver-disease/harvoni/harvoni_pi.pdf)The biggest problems with these data are they are still relatively small (esp GT 1b's) and I have not seen a real breakdown of the results. For instance is the a difference between stage 2 vs stage 3 GT1a's?

Here is where it gets really tricky - when data say one thing and your doc or your gut say something else. We use data in a quest for certainty - to make sound decisions. But this data is all so close, that in the end the only certainty we get is that final lab results - either we are cured or we aren't. What I really hope for every patient is that they can live with the decisions, embrace them, then let them go. What will be will be. If you can let poor outcomes be nothing more than a temporary disappointment and then get back on track, it helps. Yes, we are dealing with our lives, but life is what we are doing in the moment, and these moments are all so precious.

I think it is time to agree to disagree, and move on from this discussion.

Yup the data is small but it is what it is.  I have put the question on this forum a while back trying to figure out 8 weeks Vs 12 and saw no feedback. And TBH I do not understand a word that Paul is saying. To scientific for me. Ultimately I need to stick  to my doctor's decision as he is responsible not the people on this forum. I do think it's sad you shutting the door on any discussion on the matter in an open forum though. People should be allowed to discuss things openly. That's the purpose of a forum...
Title: Re: Harvoni Side effects
Post by: nicole_1234 on January 05, 2015, 02:00:08 am
I've noticed some extra hair shedding when I wash or brush, but nothing crazy and also glad it's only 12 weeks. Seems like it won't be noticible.
Title: Re: Harvoni Side effects
Post by: Lynn K on January 05, 2015, 03:03:02 am
I have noticed hair loss for the last few years while not on treatment. I basically have lost all my body hair and some areas on my head are a little thin but at least in my case I believe it is a symptom of my cirrhosis.
Title: Re: Harvoni Side effects
Post by: mario555 on January 05, 2015, 08:26:56 am
To the last few posts. I agree with the tintinitis (25% in left ear). Mine seems to be loudest in the hours following the pill or, if I get too excited. This ear problem is an 'advanced warning system " that I'm getting hyper. I did have that same problem before but at a much lower level.
Hair thinning. Yes I do but I' ve started with a full head of hair so only my wife sees it in the shower drain (men are blind to that Ha, ha)
Bowel movement. I'm usually so regular I could set my watch with them! Now, I have major difficulties to go. Thanks for the "prune trick"...
Personal drive. I am a baby boomer so, I 've always been hyper keen to make an extra buck! Since I've started the treatment, I have trouble to get going! What is affected is the" undertaking", the first few steps. I' m lucky to be able to reduce my work load for the next 4 months.
So all together, I agree there are side effects in addition to the ones experienced by Gilead studies.
On the other hand, I feel like bursting with energy. I have to go for walks all the time. I am almost hyper which I have to control or else "the ear ringing..."
Mario
Title: Re: Harvoni Side effects
Post by: Roger on January 05, 2015, 02:51:18 pm
Mario,
I notice that you are in Canada.  Did you have any problems getting Harvoni?
Was there an additional cost for the drug in your Provence?
Do you mind sharing how the Canadian system works for these types of
expensive drugs? Thanks!
Title: Re: Harvoni Side effects
Post by: wa7uib on January 05, 2015, 03:05:13 pm
Iam newbie to this forum. Alot of good information I've read on here, so I signed up for it. I just started on Harvoni 4 days ago. The side effect Iam noticing is it does make me tired and or sleepy. No headaches or anything. I've had Hep C probably since the 60's at my guess. Never noticed anything from it till I got into my 60's, now its starting to take it's toll. I was diagnosed with siroses as well. Don't know what stage it's at. I've only seen my Hepatologist once and had blood tests and a Ultra Sound. So, I have more to go through there I am sure. I also developed a chronic disease caused by Hep C called PCT. It causes sores and blisters on my hands. So, Iam taking the Harvoni now in hopes it can make me better. Thanks for all the posts guys..It really helps to read what others are doing and been through on here and mayby even what to expect.
Title: Re: Harvoni Side effects
Post by: Lynn K on January 05, 2015, 03:47:12 pm
Hi wa7

I also have had hep c since I am guessing 1978 and found out in 1990.

I have treated and did not respond to the old treatments so currently I am am starting week 8 of 24 weeks. I was diagnosed with cirrhosis in Jan 2008.

As far as I know there are basically compensated and decompensated cirrhosis. Decompensated me and your liver can no longer function fully and complications start to set in.

When I was diagnosed the first thing my doctor did was give be the pneumonia vaccine usually for those over 65 and got me vaccinated against hep a and hep b. We also did an upper endoscopy to check for esophageal varicies they are enlarged blood vessels in the swolling tube that kind of look like vericose veins. I had a repeat 2 years later and the vessels had enlarged enough to be at risk of bleeding si I had several banding procedures to destroy the enlarged veins.

I get blood work every 6 months plus an abdominal ultrasound to check fir liver cancer. Hopefully your doctor is setting up similar program for you. You need to be under the care of a hepatologist preferably associated with a liver transplant center if you can. They are best trained to follow patients with advanced liver disease like your and I have by having cirrhosis.

Good luck to you hope you make. SVR
Lynn
Title: Re: Harvoni Side effects
Post by: mario555 on January 05, 2015, 05:54:06 pm
Health care in Canada covers visits to doctors and hospitalization. It doesn't cover medication. We have an overly generous welfare system that will pay medication to welfare recipients and prisoners. If you're not on welfare, you must rely on your own money or private insurance. So, if you need a new liver, they'll do the transplant for free.
In my case, I had planned the medicine expense 2 years ago in case I would not be covered. I was lucky to have my insurer cover 100,000 out of a 160,000 bill. Gilead covered the rest. I have nothing but good things to say about Gilead.
No provinces offer any kind of financial aid. If you're employed and have no insurance or if you're insured with the wrong company, you're screwed.
The state of health care is dependent on governments that change every 4 years. I don't think they give a hoot as to what happens to me.
It is so hard to get financed for medication that we are but a handful of us to be treated with Harvoni. If you are poor, or a bandit, you'll get the medication for free. So, if you can't contribute financially to society, governments will keep you healthy! For the ones paying taxes.... Good luck!
Title: Re: Harvoni Side effects
Post by: mario555 on January 05, 2015, 05:56:31 pm
By the way good news ; just got my 4 weeks viral load.... UND.....
Title: Re: Harvoni Side effects
Post by: Katie on January 05, 2015, 06:16:16 pm
Mario!  That is wonderful!!!!  I get my results on Thursday and know they will be positive.  I don't care about UD at this point as I am just at 4 weeks, but many are seeing that result. 

Happy New Year to you and everyone on this forum.  It is so remarkable after all the years of suffering and waiting for a cure that actually works!  I am totally jazzed for all of us!

Katie
Title: Re: Harvoni Side effects
Post by: HHburme on January 05, 2015, 07:30:01 pm
Mario....Great news !!!    On your way to being cured !!!   So exciting to hear that the treatment is working.  Another week before I get the 4 week blood work, fingers crossed.

Fight the Good Fight !! 
Title: Re: Harvoni Side effects
Post by: CHepCFree on January 05, 2015, 10:52:50 pm
It looks as if senna is a problem after long term use but since our liver is healing and already compromised I wouldn't use it.  Check this out and there is lots of other info if you just Google senna liver.  I'd definitely ask your doctor if you are planning to use this daily.

http://www.nlm.nih.gov/medlineplus/druginfo/natural/652.html#Safety

Thanks for the info on senna.  I only did two days in a tea with other ingredients but will stop and do more prune juice.   I love the taste of that, believe it or not.   Just had my 4 week test today and scheduled for a fibroscan next week.   I had a biopsy 10 yeas ago an was a 2.5.   Insurance didn't ask for anything at this time, but I want to know what stage the damage is.   Anyway...thanks for the senna info. 
Title: Re: Harvoni Side effects
Post by: Katie on January 05, 2015, 10:58:50 pm
You are welcome CHep!  I have been researching supplements on what affects the liver negatively for the last 10 years.  St John's wort and Kava Kava are a couple of bad ones.  I LOVE prunes and prune juice and prune filled pastries are my favorite, although I avoid the bakery section and try and be good.  Some people don't know what they are missing.  <Big Smile>
Title: Re: Harvoni Side effects
Post by: CHepCFree on January 05, 2015, 11:09:46 pm
I hope people call Gilead.  You are right that trials were small.  We are thr rel test cases.   

Yep finally bought some prune juice and found some tea with senna which is an herbal laxative.  May try some actul plums.     Thanks.

Phone number for Gilead to report side effects is 1-800-445-3235.   They will take your name and information.   Very friendly...
Title: Re: Harvoni Side effects
Post by: Roger on January 06, 2015, 12:30:08 am

Health care in Canada covers visits to doctors and hospitalization. It doesn't cover medication.  If you're not on welfare, you must rely on your own money or private insurance. So, if you need a new liver, they'll do the transplant for free.

Gilead covered the rest. I have nothing but good things to say about Gilead.

Mario,
Thanks for the explanation.  So while you are in the hospital (liver transplant) they'll "give" you the needed drugs - but when you leave the hospital you are on your own for the need drugs?  Is that correct?  If it is correct, do they "make sure" a transplant person is "setup" with the funds necessary to pay for the drugs - or else no transplant?

What type of private insurance are you allowed to purchase? I was under the impression that private insurance was against the law in Canada (BC?).

I have heard many good things about Gilead too.

Title: Re: Harvoni Side effects
Post by: mario555 on January 06, 2015, 07:07:46 am
Roger. Private insurance is available but not widely held (medical). It will pay what's over and above 'basic care'. For example, a single room at the hospital, ambulance drive, etc. Also in the more populous provinces, you could have "preferential access" but, if the doctor receives payment from you or an insurance company, he has to "hop out" of the government regime. In Canada, all health services are paid by governments or else, get out! There is absolutely no way of limiting health services because everyone would prefer to have a hospital at every Street corner and a doctor in the basement of your home. If it's free, you must ration services in order to control costs. Access will be determined by the severity of your disease. YOU CANNOT BUY MEDICAL SERVICES at any costs. If you want access right away, you must go to a private clinic (very, very few) or go to the states. An interesting point is that I have never met/known someone who sued his doctor. Doctors do require medical insurance but the cost is reasonable.
I don't know about transplants. Some medication can be received after a prior authorization. My guess for Harvoni would be 2 years before it goes on that list.
It's not a bad system because if you have a heart attack, you'd be seen in 5 minutes, patched up, operated on and walk out of the hospital with $0 in costs. Unfortunately, the system is being abused by welfare people that will come at the hospital with a cut on their finger and the'll use an ambulance to jump the queue!
I am in Florida right now and I see hospital signs saying 5 minutes delays. Back home it would be 9 hours wait...
Finally, when I last saw my hep doctor before starting treatment, he had just received a Fibroscan. I was the first to try it and tried it again 2 weeks later to make sure it worked well (F4 both times). Total cost to me? $0...
It has its strengths and weaknesses. I read that for many people in the states you are one major disease away from bankruptcy. In Canada, a major disease will provide you with rapid access...
Title: Re: Harvoni Side effects
Post by: Roger on January 06, 2015, 11:56:04 am

In my case, I had planned the medicine expense 2 years ago in case I would not be covered. I was lucky to have my insurer cover 100,000 out of a 160,000 bill. Gilead covered the rest.


Mario,
Thanks for the explanation.  Did you purchase insurance in the state to cover your Harvoni? I'm confused what you meant by the statement that I highlighted above
Title: Re: Harvoni Side effects
Post by: mario555 on January 06, 2015, 12:19:15 pm
My insurer is "The Canadian chamber of Commerce" due to the fact I'm self employed. Rates are determined by the group history rather than your personal history. Self employed are usually younger than me so rates are low. As for the Florida business, I am just starting my new life as a snowbird. I bought my pills in Canada from my neighborhood pharmacy and brought them here. Also, Harvoni is cheaper in Canada than in the states. $26,000 for a month supply.
Title: Re: Harvoni Side effects
Post by: Roger on January 06, 2015, 12:28:17 pm
I see. We have a lot of misconceptions here, regarding the Canadian system.
I had read somewhere that the Canadian government negotiated a cost from Gilead of $56K for a 12 week Tx.
Title: Re: Harvoni Side effects
Post by: derekoti on January 07, 2015, 01:25:55 am
this is day six for me taking harvoni and i have not had any side effects yet praying it stays this way throughout the 24 weeks
Title: Re: Harvoni Side effects
Post by: goodbyehepc on January 07, 2015, 01:42:31 am
GHC
I was undetected at 6 weeks.  I did have an issue at 8 weeks where I had to go without medication for 5 days while they where working out the copay.  It ended up costing me $8,634 out of pocket for the last 4 weeks. The doctor worked through Gilead etc. but in the end I had to pay.  I am now having another issue that my doctor is leaving the practice and had given me notice that I have to find another doctor.  The good news is that I am about 3 weeks from being done.
I am having some joint pain after exercising but think it is normal and not due to the Harvoni.  Are you doing better now?
- Art

Hey Art
Wow this is too bad you had pay out of pocket. I'm sorry to hear that. I also had insurance fiasco at the end of week 8. They too didn't want to pay for the rest of the 4 weeks. They denied authorizing for 4 more weeks but we appealed it and then miraculously won. I also have to find a new doctor and hope to get a better one soon.
Now I have 2.5 weeks more to go. I am undetected but I've been experiencing a lot of muscle and joint pain toward the latter part of my treatment, and to top it off a few days ago I am feeling  s soar throat so I'm coming down with something etc. ughhh but the joint and muscle aches are not related to this. I actually have some fluid build in one of my  knees. My doctor and I are wondering if I worked too hard on my body exercising because of all the surge of energy I got since from the treatment.
You must be nearly finished? How are you doing now? Any side effects?
GHC
Title: Re: Harvoni Side effects
Post by: Katie on January 07, 2015, 01:48:44 am
I am having a real sweet tooth lately where the craving is almost unstoppable.  Is anyone else experiencing this.  I know sugar isn't a good thing to be eating but the craving is especially bad in the evening.  In the past couple years I have enjoyed ice cream a bit too often but now it is anything sweet.  Ugggg!

Thanks,

Katie
Title: Re: Harvoni Side effects
Post by: goodbyehepc on January 07, 2015, 01:51:18 am
I am having a real sweet tooth lately where the craving is almost unstoppable.  Is anyone else experiencing this.  I know sugar isn't a good thing to be eating but the craving is especially bad in the evening.  In the past couple years I have enjoyed ice cream a bit too often but now it is anything sweet.  Ugggg!

Thanks,

Katie

Yes, I have as well ever since beginning treatment but not sure why. I'm trying with all my might to stay away but some days are harder then others but try try try
GHC
Title: Re: Harvoni Side effects
Post by: mario555 on January 07, 2015, 08:34:38 am
Strange side effects for me. As I am finishing my 8 weeks out of 24 I have noticed something strange. Please do not laugh! I've had problems over the last 15 years with a growing case of hemorrhoids, let's say 6 out of 10 for severity. It's now at a level 1,almost disappeared! Now I want to know if any of you had an improvement for any kind of blood pooling may it be in your ankles, hemorrhoids or other? Sorry again for introducing this subject....
To Lynn K. Thank you for your talk of last week about my poor behavior. It did some good! I was in a large mall yesterday and saw a Ben and Jerry booth. Decided to get myself that big sunday. As I was waiting my turn, I thought of you and other members who have been super careful with their nutrition and as I approached the counter I started feeling guilty and thinking of the damage the scrumptious sunday would do to my liver. I left the counter without the sunday....
At the start of my 9 week I have very little side effects. My health is generally improved and I can't feel my liver anymore which is wonderful. To all the newcomers, don't hesitate to start the treatment. Kudos to all the people that suffered those 48 weeks of interferon, you have been way tougher than me!
Title: Re: Harvoni Side effects
Post by: fuzzy72 on January 07, 2015, 08:39:23 am
 :) Just rec my RNA 4 week test result: not detected! Side effects have been few, before starting Harvoni I had "aching" similar to flu aches from head to toe. I assumed this was the cryoglobulinemia. After the first week of Harvoni the aches diminished greatly. I still have some but not nearly as bad as before. I do get headaches but honestly, I had headaches before. I do wear out easily though and hope that will improve as well. I hope the cognitive impairment gets better too. Before Harvoni, I had no appetite and had lost 25 lbs in about 3 months. I have an appetite now and actually become so ravenously hungry at times I think I could eat a smorgasbord.I have 8 more weeks of Harvoni to go and the results have really pimped my enthusiasm. My spouse has not started treatment yet but hopefully, in the next 2 weeks. I am still angry with the MD who misread my report 11 years ago. Had I known then I doubt I would have the cryo or Cirrhosis. For 11 years I was treated with high dose steroids for several months at a time. This is contraindicated in Hepatitis B and C.
Title: Re: Harvoni Side effects
Post by: fuzzy72 on January 07, 2015, 08:46:16 am
Katie, I have the sweet tooth craving too. I will suck on a piece of hard candy if its really bad but otherwise trying not to cave in. My spouse and I have really moved to change our diets to a more healthy way. We never were big at fast food but now there's no fast food, very little to no processed food either. My spouse is retired and thank god he loves to cook and is very conscious of the food we eat.
Title: Re: Harvoni Side effects
Post by: art1951 on January 07, 2015, 11:55:41 am
Hey Art
Wow this is too bad you had pay out of pocket. I'm sorry to hear that. I also had insurance fiasco at the end of week 8. They too didn't want to pay for the rest of the 4 weeks. They denied authorizing for 4 more weeks but we appealed it and then miraculously won. I also have to find a new doctor and hope to get a better one soon.
Now I have 2.5 weeks more to go. I am undetected but I've been experiencing a lot of muscle and joint pain toward the latter part of my treatment, and to top it off a few days ago I am feeling  s soar throat so I'm coming down with something etc. ughhh but the joint and muscle aches are not related to this. I actually have some fluid build in one of my  knees. My doctor and I are wondering if I worked too hard on my body exercising because of all the surge of energy I got since from the treatment.
You must be nearly finished? How are you doing now? Any side effects?
GHC

GHC
I have another 7 pills to go and then will get retested and should have results the following week.

I have not had any issues with joint and muscle pain other than those that I normally get after not exercising for a while.  I still do have headaches but they are easily manageable with Tylenol.  I have had headaches for years but they are a bit worse on Harvoni.  I could tell when I was out of pills for 5 days that the headaches were starting to go away on the 4th and 5th day.

Any way you measure it, it has been relatively easy and I definitely feel better and have more energy.  I am sure there are lots of individual variables such as state of the liver etc. that come into play.  I am hoping for undetectable again next week and then in 12 weeks.

I have noticed that most of the swelling in the ankles that I was getting has also gone away.  I am assuming that my liver is not under as much stress as it was and is now performing better.

As far as craving sugar, I have never met a piece of chocolate that I could resist so it is difficult to tell if the craving is worse or not.

Thanks,
Art

Title: Re: Harvoni Side effects
Post by: Roger on January 07, 2015, 01:31:06 pm
I notice a little ill stomach feeling - come and go, but not too bad.  Not like the old Tx!

Fatigue that comes & goes in waves is more noticeable... especially if I exert myself.
But it's livable.

My doc told me to stop all manual work and grab a book for the 12 weeks. She said - 'take a vacation - you are healing, so go heal'.  Good advice!
Title: Re: Harvoni Side effects
Post by: Katie on January 07, 2015, 05:46:28 pm
Hi everyone,  I am curious about the blood work you are getting for the viral load.  There are 2 kinds.  One that gives the actual number...  IU/ml and another one which is more sensitive to tiny amounts to see if it is still present (positive or negative without a number).  Evidently, if it gets below a certain amount it may not be detected with the first type of test.  Do you know about this?  Many are reporting undetected at 4 or 8 weeks and I am curious.  I get my first 4 week results tomorrow.

Thanks for your input!

Katie
Title: Re: Harvoni Side effects
Post by: JoeK9999 on January 07, 2015, 06:20:57 pm
Katie,
The viral load test which shows the actual number is the quantitative test.
The other test is called the qualitative test.  Both have a lower limit of detection so
neither will definitively say every last strand of virus is gone. We all have to wait for the 3 month EOT test to know that it isn't replicating again.
Title: Re: Harvoni Side effects
Post by: Katie on January 07, 2015, 06:38:09 pm
Thanks Joe!  I'll check on the EOT test.  I figured I was missing something and appreciate your response.  There is a lot to keep track of and that was never explained to me. From all of the sites I have read, I must have missed that along the way.

Katie
Title: Re: Harvoni Side effects
Post by: Roger on January 07, 2015, 06:42:51 pm
We all have to wait for the 3 month EOT test to know that it isn't replicating again.

Joe,
I'm glad Katie brought this up, as I was reading an article on Hepatitis Central and was "trying" to figure this out myself last night.  Can you please explain the EOF test?

If the two basic tests are not 100% accurate down to 0, then do the doc's use the EOF test to be 110% sure the dragon is dead?
Title: Re: Harvoni Side effects
Post by: JoeK9999 on January 07, 2015, 08:08:11 pm
Katie,
EOT = "End of Treatment".  It seems that the norm today is to do a Hep C test
12 weeks after treatment ends. Some doctors still want to wait for 24 weeks after.
At that point it does not matter which test is done (qualitative or quantitative).
Undetected at the 12 or 24 week after your last dose, indicates the virus is not replicating anymore and thus has been eradicated from our bodies.  All of us
want to know why the few percentage relapsed after the EOT. I have seen speculation that the ones who relapsed we're either re-infected through blood or had major immune disorders. I don't know if that is fact or fiction and
I am not in the medical field. At some point there will be more published about it.
In the meantime we all need to finish all of our medicine so we will be cured and we can quit worrying about the dragon!!!
Title: Re: Harvoni Side effects
Post by: ranjankoyn on January 07, 2015, 08:11:30 pm
I just got my six week draw last week it showed <15 still detected
Title: Re: Harvoni Side effects
Post by: Katie on January 07, 2015, 08:41:42 pm
Katie,
EOT = "End of Treatment".  It seems that the norm today is to do a Hep C test


HA   So that's why when I searched for the Hep C EOT test nothing came up.  hahahaha...I just am not good with acronyms even though in my field we used them all the time.  Biologist for the State of Alaska.  Have no idea how I got infected other than I did know some druggies way back when and did do some histology work for a cancer clinic back in the 80's but it could have been anywhere I guess.  Drove me crazy for the first year or two until a friend told me to "Let it GO as you have it so deal with it".  That's what good friends are for!

Thanks again for your clarification.  I like understanding so I know what to ask my doctor and can get more out of his response.  My appointment is tomorrow!  I am excited as I have been from 2,600,00 to 16,500,000 for the past 10 years and I can tell it is working by how I feel

Thank you!

Katie
Title: Re: Harvoni Side effects
Post by: BG42 on January 08, 2015, 10:39:47 am
Hello everyone!

(first post)

I found this thread a few days ago because I'm currently waiting for my insurance company to approve Harvoni. My GI doc believes I am a good candidate for the treatment and thinks they will approve. My VL is 4 million and I am at stage 3 fibrosis. I quit drinking alcohol a couple years ago after I found out I had Hep C.  I have had hep c for most likely over 30 years. I undoubtedly got it from blood products that I received in the hospital, in the 1980's, as a kid.

I'm nervous for the treatment and, like all of you, have the side effects on my mind. I work in a job that requires quite a bit of energy. Also, I enjoy exercise and running so I wonder if running will make me feel better or worse while I'm treating.

I also want to thank all of you who have posted in this thread. you have no idea how helpful it is to read posts from people who are undergoing treatment right now. It is also very encouraging to see all the undetectable  virus loads after just four weeks! I will be on a 12 week treatment myself.

Keep posting, I'll keep reading, I'll even update my progress myself! Thanks for being there!

Title: Re: Harvoni Side effects
Post by: Roger on January 08, 2015, 11:02:39 am
BG,
This is a great place to get info, double check your doctor, etc.

Occasionally, I feel ill to my stomach (more so in the first weeks of Harvoni Tx), but it passes within 20 mins or so.

Occasionally I get a mild headache (again, more so in the first weeks of Harvoni Tx), and they too pass in 20 mins or so.

Without 7 or 8 dried plums 2 - 3 times a day, I experience constipation.

Especially those first weeks, I would get REALLY fatigued - easily.  Tired is not the correct word - fatigue is better.  When I rest a while it too passes.

My doc told me NOT to do labor (I'm retired and like to work in my garden) for the 12 weeks. 'Take a vacation, let your body heal', she said.  Good advice.

It is much better now that I'm almost 2/3's into Tx - but during that first month I would not have wanted to be at a job that was a strain.

My 2¢.  You'll get plenty of advice here. Just keep asking!
Title: Re: Harvoni Side effects
Post by: Amj1951 on January 08, 2015, 11:06:17 am
Hello everyone!

(first post)

I found this thread a few days ago because I'm currently waiting for my insurance company to approve Harvoni. My GI doc believes I am a good candidate for the treatment and thinks they will approve. My VL is 4 million and I am at stage 3 fibrosis. I quit drinking alcohol a couple years ago after I found out I had Hep C.  I have had hep c for most likely over 30 years. I undoubtedly got it from blood products that I received in the hospital, in the 1980's, as a kid.

I'm nervous for the treatment and, like all of you, have the side effects on my mind. I work in a job that requires quite a bit of energy. Also, I enjoy exercise and running so I wonder if running will make me feel better or worse while I'm treating.

I also want to thank all of you who have posted in this thread. you have no idea how helpful it is to read posts from people who are undergoing treatment right now. It is also very encouraging to see all the undetectable  virus loads after just four weeks! I will be on a 12 week treatment myself.

Keep posting, I'll keep reading, I'll even update my progress myself! Thanks for being there!

BG42, I am new too (Harvoni for 12wks.) and I was so afraid to take the first pill and I came here for help and there is lots of help and support from people who really do understand. I promise after you take the first one your anxiety will go down. I am active and its early true, but so far I feel good and knowing that pill is killing a horrible disease is a great feeling. Good luck to you : )
Title: Re: Harvoni Side effects
Post by: mario555 on January 08, 2015, 11:22:00 am
Welcome to the group! Try not to worry too much about the side effects! As stated in another post, your anxiety will fall off after the first pill... As for the benefits, watch after the second or third pill; your new found strength will become evident. Good luck and keep reading the posts..
Mario
Title: Re: Harvoni Side effects
Post by: Tutu on January 08, 2015, 01:07:07 pm
I am on day30, got my blood work all my liver enzymes are in the normal range and my HCV Quantative <12  LOG 10HCV <1.08 Yay! 8 more weeks!  I do have a question though has anyone else had any pain in their liver, not bad but just enough to know that you have a quiver in the liver?  I have also had intestinal issues like cramping.  I told this to my Dr and now he wants to see me and possibly D/C my meds :-(

Anyone else had these side effects besides the fatigue which has gotten better

Pat
Title: Re: Harvoni Side effects
Post by: mario555 on January 08, 2015, 01:38:53 pm
I did (do) have little pulling in my liver once in a while but I was UD after 4 weeks same as you. I would suggest you continue with your med after seeing your doctor. Don't forget that "normal people" have pains in their livers also... Good luck!
Title: Re: Harvoni Side effects
Post by: JoeK9999 on January 08, 2015, 01:47:21 pm
HA   So that's why when I searched for the Hep C EOT test nothing came up.  hahahaha...I just am not good with acronyms even though in my field we used them all the time.  Biologist for the State of Alaska.  Have no idea how I got infected other than I did know some druggies way back when and did do some histology work for a cancer clinic back in the 80's but it could have been anywhere I guess.  Drove me crazy for the first year or two until a friend told me to "Let it GO as you have it so deal with it".  That's what good friends are for!

Thanks again for your clarification.  I like understanding so I know what to ask my doctor and can get more out of his response.  My appointment is tomorrow!  I am excited as I have been from 2,600,00 to 16,500,000 for the past 10 years and I can tell it is working by how I feel

Thank you!

Katie

Katie - My doctor ordered the Aptima HCV RNA qualitative test for me at 4 weeks and I was stll detected. He and all the literature on this test claim it maybe the most sensitive test available. I didn't like being detected and not knowing my viral load, but I don't want false hope either. My 12 weeks of Harvoni is complete next Thursday and he doesn't want to test for 24 weeks EOT after that. I asked for a 12 week EOT test for sanity also and he said okay. These are the only tests that count. Fingers crossed!
It will be the same Aptima test.
Title: Re: Harvoni Side effects
Post by: Katie on January 08, 2015, 01:59:34 pm
Strange side effects for me. As I am finishing my 8 weeks out of 24 I have noticed something strange. Please do not laugh! I've had problems over the last 15 years with a growing case of hemorrhoids,
At the start of my 9 week I have very little side effects. My health is generally improved and I can't feel my liver anymore which is wonderful. To all the newcomers, don't hesitate to start the treatment. Kudos to all the people that suffered those 48 weeks of interferon, you have been way tougher than me!

I'm not laughing Mario.  Since HepC can affect the blood vessels in the esophagus, it could very well affect the other end as well.  I see my doctor today and will ask him.  I have the same problem and sometimes it is very bad...at other times not so much and I too have noticed they seem to have shrunk down to being not noticeable.  Interesting.  I never thought about it until I read your post as it is easy not to notice the improvements and concentrate on the negative.  I am so lucky as my side effects have been 90 % positive.

BG:  Glad you found this site.  Please listen to your body and don't push yourself and drink lots of water (1/2 gallon plus a day).  I worked for 10 years feeling terrible in a high stress job and pushed myself through each day.  I retired almost 2 years ago as I just couldn't do it anymore, but I have to say, I'd have an easier time working now, than I did then, but am so grateful I don't have to.  If you have any personal leave available, you might want to keep that in mind if it is too much for you.  As far as your work out...maybe do shorter runs at a slower pace and if that works do a couple a day.  Just listen to your body as exercise is always beneficial.

Good luck to you, and keep us posted!

Katie
Title: Re: Harvoni Side effects
Post by: Katie on January 08, 2015, 02:03:39 pm
Katie - My doctor ordered the Aptima HCV RNA qualitative test for me at 4 weeks and I was stll detected. He and all the literature on this test claim it maybe the most sensitive test available. I didn't like being detected and not knowing my viral load, but I don't want false hope either. My 12 weeks of Harvoni is complete next Thursday and he doesn't want to test for 24 weeks EOT after that. I asked for a 12 week EOT test for sanity also and he said okay. These are the only tests that count. Fingers crossed!
It will be the same Aptima test.

I like seeing the viral load too especially at this early stage to make sure it is dropping.  How exciting to have it go from millions to less than 100 as so many have experienced.  I'll let everyone know how it goes today and don't know what test he gave me, so we'll see.

Thanks Joe!

Katie
Title: Re: Harvoni Side effects
Post by: JoeK9999 on January 08, 2015, 06:24:57 pm
My doctor didn't even want to do the 1 month test.
His opinion is no test matters except 6 months after end of treatment.
He believes everyone goes undetected with Harvoni by the end of treatment
and it is a waste of money to do them during treatment. He did do at least 3 CBC's and Liver panels which showed ALT down in normal range along with everything else.
I practically had to bend his arm to order the 1 month HCV test.
I guess he just doesn't have the greatest bedside manner. Oh well. He's the doctor.
Title: Re: Harvoni Side effects
Post by: kate0b1 on January 08, 2015, 06:48:40 pm
@BG42, I am three weeks into tx and go to gym usually 3 times a week, mostly because like Art i have never met a piece of chocolate i didn't like. I kinda took it easy the first week just to make sure but it was fine so just jump in.
Title: Re: Harvoni Side effects
Post by: Roger on January 08, 2015, 07:56:54 pm
My doctor didn't even want to do the 1 month test.

I guess he just doesn't have the greatest bedside manner. Oh well. He's the doctor.

Joe...
and your the customer!  Do not fear telling him what you want. It's your life, peace of mind, and money.  Those who are tenacious live the longest.  Those who "do what the doctor says", believe that the"doctor is always right", have the most problems...
Title: Re: Harvoni Side effects
Post by: Katie on January 08, 2015, 08:08:37 pm
Hi everyone.....

So here is my 4 week report!

End of November VL =  2.692,043 with normal ALT/AST
The virus fluctuated from over 2 million to over 16 million during the past 9 years and I am lucky to not have cirrhosis.  This is my first treatment as the old horrible one was not worth it due to the small cure rate percentages, so I refused it.

4 week blood work:  VL = 59   

So for all of you newbies.....this is a miracle drug and welcome aboard!  Don't Worry....Be Happy and we are around to reap the benefits.  I feel so blessed and so grateful!

Katie
Title: Re: Harvoni Side effects
Post by: BG42 on January 08, 2015, 08:21:07 pm


So what happens to us hep c patients after we are cured, after SVR? For example, will my stage 3 liver go back a little bit possibly? (stage 2 or even a stage 1?)

I feel lucky to have the opportunity to be able to treat this!

@Katie That is fantastic news! Congratulations to you! Are you on an 8 or 12 week treatment?
Title: Re: Harvoni Side effects
Post by: Katie on January 08, 2015, 08:26:00 pm
Mario:  I asked the doctor about the hemorrhoids and he stated that if you have cirrhosis the scar tissue can cause pressure with the veins and that pressure goes to the most sensitive areas which can affect the esophagus and the anus and lower rectum. 

In my case since I don't have cirrhosis, it is independent however since I am keeping myself well hydrated that could also benefit the issue.  I was not good at drinking water, or any liquids unless it was really hot out and we just don't have much hot weather here.  Guess who is going to maintain this healthy addition of drinking over 1/2 gallon of water a day!

Hope this helps!

Katie
Title: Re: Harvoni Side effects
Post by: Katie on January 08, 2015, 08:31:09 pm

So what happens to us hep c patients after we are cured, after SVR? For example, will my stage 3 liver go back a little bit possibly? (stage 2 or even a stage 1?)

I feel lucky to have the opportunity to be able to treat this!

@Katie That is fantastic news! Congratulations to you! Are you on an 8 or 12 week treatment?

BG42:  Thank you!   I am on 12 week and won't have any additional blood work until then.  As for the cirrhosis, you should ask your doctor or research that online.  My understanding is that the liver can heal itself, but I don't think the scar tissue can be reversed.  I am not a doctor and do not have any medical expertise, so I must have read that somewhere.

Does Anyone out there know the answer to BG's question?
Title: Re: Harvoni Side effects
Post by: Tutu on January 08, 2015, 08:57:16 pm
The scarring or fibrous will not heal but other parts of the liver will regenerate
Title: Re: Harvoni Side effects
Post by: Roger on January 08, 2015, 09:12:43 pm
Tutu,
What does that mean?
The scaring is spread throughout the liver, not just in one place.
My doc said all stages will heal, and I just assumed that it meant
the new replaces the old dead tissue - but now I'm not sure of this.
How does it work?
Title: Re: Harvoni Side effects
Post by: kate0b1 on January 08, 2015, 09:28:07 pm
Katie, that is so awesome news, I might be a little excited now to get my labs next week lol, but could you please keep the cold weather where it belongs? It's 10 degrees in the the great north east as we speak.
Title: Re: Harvoni Side effects
Post by: Katie on January 08, 2015, 09:53:52 pm
Thanks Kate.  You should really be looking forward to it.  Everyone in the doctor's office was cheering with my results.

Did you see my Alaska weather update on the other thread?  You'll want to move to Alaska when you read it.  HA!

I'll be thinking of you next week and Island Girl gets her results on Monday.  We are all on our way and after so many years of suffering and feeling like biohazzard it doesn't really seem real yet.....But it IS!   <big Smile> and ((((((((HUGS)))))))

Katie
Title: Re: Harvoni Side effects
Post by: mario555 on January 08, 2015, 10:40:12 pm
Kathie. Thanks a lot for the info. It's nice of you to think of others while you have your own problems to deal with. It's well appreciated.
For the ones having problems getting tests after 4-8 weeks or whenever, think that if you want a test that tells "you" something useful to help relieve the anxiety, it's medically necessary!! In most cases that same doctor would give you a prescription for valium to relieve stress in a heartbeat! Why not replace the script against a test??
To the other ones talking about liver cell regeneration. I have read so much stuff I can't pinpoint the exact research. The research had been done on a long time scale and was hard to put together because of the time delay in finding cured people willing to participate in a multi-year study and the waiting time in order to wait for improvement. The results were that on average we'd see a 1 to 2 grade improvement. I am F4 and I was told I was borderline cirrhotic. (not real sure of that state???). I was happy with the long read because I saw that Longshot chance. The study was done from late 90 to mid 2000. It only concerned INF - INF +riba.
Title: Re: Harvoni Side effects
Post by: JoeK9999 on January 09, 2015, 06:01:40 am
Katie - Great news. Keep the positive attitude going. It helps us all.
Mario - I read at least one report on this board of the liver stage going 2 stages back in the right direction after a year of prior peg/rib treatment.
See below. It was one of Lucinda's post.

You are on your way in the right direction. The anxiety is the worst part of these new treatments. Hopefully in one year we will look back and can laugh together about it. We are not hearing much from people on the trials probably because they have moved on with the hep c free worry gone. They have other problems now like getting their car fixed:-)


Re: Serious issue with my four week blood test, help!
« Reply #7 on: December 05, 2014, 02:58:03 PM »
Quote
Petra - I would also add, "That panic is unnecessary." We humans panic because of things we fear may or may not be happening. The one thing I know is that even without an SVR, if the ALT/AST normalize, your liver is benefiting. Studies have shown this. I was a responder-relpaser after 48 weeks of PEG+rib and my liver bx went from stage 2 to stage 0 - I never regretted doing those 48 weeks.
Title: Re: Harvoni Side effects
Post by: kate0b1 on January 09, 2015, 06:10:02 am
Joe, good morning, I like your post, it helps so much to have people understand the panic about labs re: trying not to panic about my labs that i haven't even gotten yet lol. One thing my PA said when i relapsed was that for 6 months my body was without hep c for the first time since i was probably 17 years old, i know she was mostly trying to get me stop crying, but that stuck with me over the last year and it makes sense. Everyday you are able to let your liver be normal or close to it is a day your liver gets to help itself.
Title: Re: Harvoni Side effects
Post by: JoeK9999 on January 09, 2015, 06:24:22 am
Kate,
You are absolutely right. When we all heard and started this it was clear in our minds
this was the miracle cure we have all been waiting for. And then weeks into it we all have the fear in the back of our minds that we are going to be one of the tiny percentage that relapse.
It's nothing but anxiety. We all want to know the details of that tiny percentage, but it really isn't published. The best news is that even that tiny percentage will be cured in the near future because the researchers have finally discovered and moved in the right direction to kill this virus once and for all. In the meantime our livers don't have the stress, prior to treatment.
Title: Re: Harvoni Side effects
Post by: kate0b1 on January 09, 2015, 06:33:13 am
I tying to remind myself I have never been in the top 1% of anything lol so why would i be in the 1% for relapsers from this right! Im making that number up by the way i don't even know what % of the trials relapsed or were non responders. Im pretty sure we haven't even got to the 12 week out labs of all of us.
Title: Re: Harvoni Side effects
Post by: JoeK9999 on January 09, 2015, 06:49:44 am
I like that train of thought. I'm going with it-:)
Title: Re: Harvoni Side effects
Post by: lucy321 on January 09, 2015, 09:34:20 am
I've been on Harvoni for two months and have one more dosage to go.  So far so good.   
Insurance coverage is a night mare and the specialty pharmacy is an even bigeer nightmare... they suck.  anyway...
i have had a slight headache now and then but that could be attributed to other things like starring into a computer screen or my phone.  I am however always tired. which they did say was a side effect.  What I don't remember hearing as a side effect was coupled with being tired, I also have insomnia.  so tired tired can"t sleep.

I am not complaining.  Harvoni, if it works, is medical marvel.  And we should all be excited. 
Title: Re: Harvoni Side effects
Post by: mookie5150 on January 09, 2015, 09:38:20 am
I started Harvoni on Christmas Day- I like to call it my Christmas miracle. I have the opposite of the most common side effects. I have not slept in almost the two weeks since I started taking it. I am now using medication to help me sleep. Honestly, it is like I have taken a hit of speed when I take Harvoni- which I don't actually mind during my work day but not being able to sleep without meds is making my mind very foggy. I have had one or two really bad headaches but maybe those were caused by sinus problems. I was prescribed the 8 week treatment plan due to my low viral low- 200,000 and I just had my first blood test after starting the pill so I will know in two weeks if it is working and how well. I am hopeful for the cure. Overall I am so happy Harvoni came along. I was diagnosed 6 years ago but prob had it for 20-30 years before finding out. My last biopsy 3 years ago had my fibrosis at level 3 damage. Due to other health problems my doctor and i decided to wait for this easier treatment. Good luck to all of you!
Title: Re: Harvoni Side effects
Post by: Mugwump on January 09, 2015, 10:49:32 am
Tutu,
What does that mean?
The scaring is spread throughout the liver, not just in one place.
My doc said all stages will heal, and I just assumed that it meant
the new replaces the old dead tissue - but now I'm not sure of this.
How does it work?
The liver is similar to a mesh net in structure. It is held together by connective tissues that hold all the blood vessels in a web. What happens is the mesh that holds the structure together stiffens and has constrictions and imperfections from scar tissue damage caused by cell death.

The only testing that can be done for permanent liver damage is done by comparative imaging of the blood flow patterns differences from a normal liver and even so testing is not really that conclusive. Function levels can return and some people on the verge of complete liver failure can and do recover to live normally. 

Thus the testing done by chemical assay, ALT etc are only a good indication of the level of current functions of the organ not the overall capacity of the liver to heal itself.

How well a liver will heal after it is free from any damaging disease or influence like chronic drug and alcohol abuse will differ in people and is not something that anyone can quantify in a general way.

Here is hoping we all find out how well our livers can heal in 2015

Eric
Edit
PS My VL count just came in >15 so I am going steelhead fishing and will stop thinking about my liver. Harvoni is a working another test right now could easily read ND.

But this thread was about side effects from Harvoni to me the side effect of getting the news about the virus being almost undetectable is a side effect I feel very good about reporting!
Title: Re: Harvoni Side effects
Post by: Roger on January 09, 2015, 12:38:18 pm
The liver is similar to a mesh net in structure. It is held together by connective tissues that hold all the blood vessels in a web. What happens is the mesh that holds the structure together stiffens and has constrictions and imperfections from scar tissue damage caused by cell death.

Eric,
Thanks for the explanation. Does the scar tissue get replaced by new tissue and if so, does the old scarred tissue dissolve away? (there's only so much room in there, one would think)
Title: Re: Harvoni Side effects
Post by: Katie on January 09, 2015, 01:54:11 pm
The liver is similar to a mesh net in structure. It is held together by connective tissues that hold all the blood vessels in a web. What happens is the mesh that holds the structure together stiffens and has constrictions and imperfections from scar tissue damage caused by cell death.

The only testing that can be done for permanent liver damage is done by comparative imaging of the blood flow patterns differences from a normal liver and even so testing is not really that conclusive. Function levels can return and some people on the verge of complete liver failure can and do recover to live normally. 

Thus the testing done by chemical assay, ALT etc are only a good indication of the level of current functions of the organ not the overall capacity of the liver to heal itself.

How well a liver will heal after it is free from any damaging disease or influence like chronic drug and alcohol abuse will differ in people and is not something that anyone can quantify in a general way.

Her is hoping we all find out how well our livers can heal in 2015

Eric

Good job on that description, Eric.  Thanks for explaining as I have found the unknown the very worse thing to deal with!  2015 is going to be life changing for so many HEPC infected folks and it can only get better each year moving forward.  It is such a big deal, and I am surprised we don't hear more about it!

Katie
Title: Re: Harvoni Side effects
Post by: Mugwump on January 09, 2015, 03:07:07 pm
Eric,
Thanks for the explanation. Does the scar tissue get replaced by new tissue and if so, does the old scarred tissue dissolve away? (there's only so much room in there, one would think)
Roger I really do not know, but I suspect the levels of connective and vascular tissue regeneration possible varies from individual to individual.
Title: Re: Harvoni Side effects
Post by: Katie on January 09, 2015, 03:20:29 pm
I am sure there is regeneration to some extent as the good tissue of the liver will be able to do it's work of detoxifying the body.  Remember a liver transplant can be a small portion of a healthy liver so even if there is some tissue damaged from cirrhosis, the improvement should be very noticeable and positive.  The human body is remarkable and it will be years before they know all of the benefits this will have for patients.  The big deal is continuing a good healthy life style to ensure the liver isn't once again compromised with bad choices and can continue it's healing and repairing.  Just my feelings about it and I am feeling very good with the future for everyone regardless of their present condition.

Katie
Title: Re: Harvoni Side effects
Post by: BG42 on January 10, 2015, 06:38:35 am
I've been on Harvoni for two months and have one more dosage to go.  So far so good.   
Insurance coverage is a night mare and the specialty pharmacy is an even bigeer nightmare... they suck.  anyway...

Lucy,

Did you have to go through AETNA's Specialty Pharmacy? My coverage is through AETNA, and my GI Doc said (after prescribing) that the next step would be the specialty pharmacy would call me when I was approved. That was 4 weeks ago and I still haven't heard anything. Naturally, I'm skeptical.

Keeping on topic with side effects, I have been reading these posts and see that some of you take your dose at night, and some in the morning. Do you make that decision on how your body will react to the medication? I was looking up pros/cons of taking Harvoni in evening vs. in morning. I'm an early bird (hence me posting at 6:38 am on a Saturday), so I would imagine I would take in the morning when I'm used to taking vitamins anyway.
Title: Re: Harvoni Side effects
Post by: Lynn K on January 10, 2015, 06:47:28 am
If you haven't heard anything yet you might consider calling your prescription drug provider. It seems like we don't get our meds unless we are proactive. I had a nightmare experience with express scripts they denied Harvoni initially. I finally found a contact email address and sent them a polite but strongly worded email. I had the meds in hand 2 days later.

As far as when just go with when you know you will consistently be able to take them at around the same time every day.

As for me I'm on the west coast and it is 3:45 AM so this night owl says good night to the early bird.

Good luck
Lynn
Title: Re: Harvoni Side effects
Post by: kate0b1 on January 10, 2015, 06:53:55 am
@BG42, good morning, I am also a morning bird. I take mine in the am along with my vitamin, mostly so I won't forget it, the bottle is sitting next to the coffee pot. I think some people have had fatigue and they may be taking it night. The first week I had some but it was the holidays so crazy busy anyway. I have been sleeping really well (a lot of dreams, but not bad ones). And as far as your meds, all of these meds go through a specialty pharm. Please find out from your insurance who yours is (i.e., I have BC and we go through carmark). When i did triple therapy, my doc's office went through a different one and caremark let it go through for one month then took over). when i started this med, i made them start with caremark/cvs so i would not have a problem. If you have a really stick pharmacy plan, they may let it go through but your co-pay could be much different.
Title: Re: Harvoni Side effects
Post by: JoeK9999 on January 10, 2015, 07:21:29 am
For any of you that have to deal with Express Scripts:

I had a problem with Express Scripts and emailed David Queller - VP Sales & Account Management. It was resolved quickly after that.
DQUELLER@express-scripts.com
Title: Re: Harvoni Side effects
Post by: D Fischer on January 10, 2015, 08:45:45 am
Hi all I started the Harvoni on 1/1/15 and can honestly say there have been little or no side effects from the treatment. I have had a couple of really light headaches that i am attributing to hunger more than the Harvoni. No fatigue to speak of I have been hitting the gym after work as usual 3 times aweek (35-45 minute cardio then weight machine circuit) with no loss of energy. when I read the side effects chart (pasted below) it states that 16%-18% report fatigue I am interpreting that to mean 84- 82% do not get this and that is the same for headache (11%-17%) 89-83% do not get this. I am guessing that I am falling in with the majority of the people in the trials. About me I am 60 yrs old have had Hepc since the late 90's no longer use tobacco or alcohol, I am an occasional light cannabis user and have never had any symptoms. Can anyone expound on this?

Table 2 : Adverse Reactions (All Grades) Reported in ≥ 5% of Subjects Receiving 8, 12, or 24 Weeks of Treatment with HARVONI
    HARVON I8 WEEKS
N=215   HARVONI 12 WEEKS
N=539   HARVONI 24 WEEKS
N=326
Fatigue   16%   13%   18%
Headache   11%   14%   17%
Nausea   6%   7%   9%
Diarrhea   4%   3%   7%
Insomnia   3%   5%   
Title: Re: Harvoni Side effects
Post by: goodbyehepc on January 10, 2015, 09:56:47 am
Strange side effects for me. As I am finishing my 8 weeks out of 24 I have noticed something strange. Please do not laugh! I've had problems over the last 15 years with a growing case of hemorrhoids, let's say 6 out of 10 for severity. It's now at a level 1,almost disappeared! Now I want to know if any of you had an improvement for any kind of blood pooling may it be in your ankles, hemorrhoids or other? Sorry again for introducing this subject....
To Lynn K. Thank you for your talk of last week about my poor behavior. It did some good! I was in a large mall yesterday and saw a Ben and Jerry booth. Decided to get myself that big sunday. As I was waiting my turn, I thought of you and other members who have been super careful with their nutrition and as I approached the counter I started feeling guilty and thinking of the damage the scrumptious sunday would do to my liver. I left the counter without the sunday....
At the start of my 9 week I have very little side effects. My health is generally improved and I can't feel my liver anymore which is wonderful. To all the newcomers, don't hesitate to start the treatment. Kudos to all the people that suffered those 48 weeks of interferon, you have been way tougher than me!
mario555
Not so strange. hemorrhoids have to do with several things, age, and diet are big ones. But with someone who has Hep C it makes sense they are disappearing as your body is becoming free of Hep C your liver will operate better , I too have found improvement on my digestive system overall. SO it makes sense the disappearance of your hemorrhoids. If you google the functions of the liver and how it works with foods and connects to the digestive process you'll understand why people with hep c become sensitive to foods that are high in bad sugar, fat and gluttonous grains. I have found that my body can deal better with a diet that is low on grains (i'm in my fifties and have been told less inflammatory foods is better), less carbs and low fat diet. Simply put, the less of those things in my body the less work my liver had to do. In fact, prior to beginning treatment my viral load actually went down from 2 million to 1.6 million and then 1.3 million. I had incorporated juicing into my diet the past two years. That has helped my health tremendously. Instead of taking a multivitamin I would add a green juice daily to my diet to get extra vitamins. Even with the hep c gone I continue to juice (though I do not do it daily as much).
GHC
Title: Re: Harvoni Side effects
Post by: Roger on January 10, 2015, 01:20:08 pm
@BG42, I am also a morning bird. I take mine in the am along with my vitamin, mostly so I won't forget it, the bottle is sitting next to the coffee pot. I think some people have had fatigue and they may be taking it night.

Kate, are you taking the pill with food?  In Europe the Gilead instruction sheet says 'take with food'. In the USA the FDA did not say that.  I called Gilead and they explained this to me, and then said that they do 'recommend' that it is taken with food at approx the same time daily. I take mine right after I eat, in the morning...
Title: Re: Harvoni Side effects
Post by: Roger on January 10, 2015, 01:25:32 pm
Speaking to fatigue, headaches, and the other little side effects... I think they are a symptom of the dragon dying. I'm in my 8th week and feel better than I have in years!

When I was 60, I was in my GP's office discussing some things.  I brought up that my joints hurt constantly. She said, 'You're 60!  Get use to it!"... so I just took for granted that joint pain came with age.

This last week my joint pain is 85% gone.  Really! and that foggy mind, sluggish body (liver?) feeling is 85% gone too.  I took my doc's advice and am just taking things easy during Tx (no more manual labor in the garden) and the further into Tx I get - the better I feel.  It is amazing.

I have had the HCV blues for so many years, that I thought that's how 'everybody' feels!  WOW!
Title: Re: Harvoni Side effects
Post by: kate0b1 on January 10, 2015, 01:28:18 pm
roger, I take mine right before i walk out the door for work, before I eat, but I eat usually a bagel with cream cheese for breakfast almost everyday (before anyone jumps about the full out carb meal, i eat nuts, cheese and an apple for lunch). My PA said it docent matter like the old meds, but i don't like to wait to long to eat after taking it. The old meds I had to eat 20gms of fat with (i may never eat peanut butter again). and I have found if i wait to long to eat on the w/e i get a little queasy.
Title: Re: Harvoni Side effects
Post by: kate0b1 on January 10, 2015, 01:31:21 pm
I had some achy old bones before my first tx and crazy achy old bones during last tx (thanks interferon and riba), i have been feeling so much better even just 3 weeks into this, its kinda amazing (maybe we will all be like the movie where they all get younger lol)
Title: Re: Harvoni Side effects
Post by: Roger on January 10, 2015, 01:40:24 pm
If you haven't heard anything yet you might consider calling your prescription drug provider. It seems like we don't get our meds unless we are proactive. I had a nightmare experience with express scripts they denied Harvoni initially.

I don't understand why a specialty pharmacy would be hard to deal with. Can someone explain this to me?  They are getting paid to do some paperwork and get the pills into FedEx. Why should they hassle a customer?

My doc gave me 2 names on their list, I choose Walgreen's Specialty Pharmacy, and made contact with them. They were absolutely wonderful!  Friendly, helpful, just like they should be... they are getting paid just like the pharmacy on the corner after all.

Strange thing happened though...  Bottle #1 was from Walgreen's.

#2 - I got a call from a small family pharmacy in my town telling me that my prescription is ready for pick up.  I picked it up.  The next day I got a call from Walgreen's Specialty telling me they are going to FedEx me #2!  I told them to hold it, etc, as I already have it.

#3 - Same situation.  This time I called my insurance company the following day and asked them if my deductible is paid, since Gilead pays it... It was not.  He said , 'why would it, this bottle isn't scheduled to be shipped until the 17th'!  I told him that I already have #3, and he nearly flipped out!  Too bad.  What's up with that system?
Title: Re: Harvoni Side effects
Post by: Katie on January 10, 2015, 02:26:20 pm
Kate:  You are funny!  I am feeling younger and better than years.  When I would complain about not sleeping or fatigue, friends would tell me it is just part of getting old!  I refused to believe it.  I take no other medication other than Harvoni and always slept like a rock, up until about 8 years ago...maybe longer...My insomnia got worse and for the past 5 years I was deprived of sleep.  It used to irritate me when they said this as it wasn't just being tired, it was horrible fatigue where my joints were so weak, and I had to force myself to do every little thing and I fought it and did more than many of my "healthy" friends to keep my sanity.  Since the first week of taking Harvoni, I am sleeping, and dreaming and I wake up feeling good without brain fog.  My spark is back.  I am happy and take joy in little things.  I feel younger.  The bags under my eyes are basically gone.   We have all been suffering because our liver hasn't been detoxifying our body.  We've been slowly poisoned and now, instead of being compromised and working against the virus  the liver is able to do it's job.  It is miraculous and the difference is incredible and we aren't even cured yet!  I can concentrate and focus and my mind is clear.  So yes....we are younger, and I am so grateful!  For those with cirrhosis, suffering with side effects, I believe you will get there too but it is understandable it will take longer so don't give up or let it get you down.

BG: I take my pill a couple hours before I go to bed.  I figured that way it gives it restful time to do it's work and I am not unknowingly taking something that works against it with teas or supplements or even food.  It's been working for me and my sleep improved almost immediately. 

I have lots of joint issues due to the field research I did which required hard physical labor, so I don't think any improvement will be seen from the treatment, but who knows.  That would be a bonus.  My arthritic knee is feeling better but I had a Synvisc shot a couple months ago which usually gives me some relief for about 6 months.  No improvement on my lower back or my wrists.

Enjoy your day!  Life is good and getting better all the time

Katie
Title: Re: Harvoni Side effects
Post by: goodbyehepc on January 10, 2015, 03:23:36 pm
I had some achy old bones before my first tx and crazy achy old bones during last tx (thanks interferon and riba), i have been feeling so much better even just 3 weeks into this, its kinda amazing (maybe we will all be like the movie where they all get younger lol)

Hahahahaha That's exactly what I've been thinking  "Cocoon"
Title: Re: Harvoni Side effects
Post by: audreywald on January 10, 2015, 04:47:03 pm
Kate, are you taking the pill with food?  In Europe the Gilead instruction sheet says 'take with food'. In the USA the FDA did not say that.  I called Gilead and they explained this to me, and then said that they do 'recommend' that it is taken with food at approx the same time daily. I take mine right after I eat, in the morning...
I am new to the forum and started taking Harvoni on October 17th.  Is anyone else taking it and experiencing any side effects?  I am getting daily headaches and fatigue when I first take the pill in the evening.  The fatigue seems to be letting up during the day.  I was experiencing nausea for the first few days but that seems to be better now.

I have 1b and my liver is f3 with a viral load of 4.7 million.  AST 75, ALT 93

Thanks, Art
Title: Re: Harvoni Side effects
Post by: audreywald on January 10, 2015, 05:56:00 pm
I am on Harvoni 9 days. very tired, queasy, but the worst is ... lets just say I am wearing an adult diaper. Out of clean sheets.

Does ANYONE know id Imodium is safe? I called the people at support solutions and they told me to call my doctor. Which I will try but I just took 1 Imodium? they're really not adult diapers; I have a very chunky 11 year old autistic grandson who is not potty trained. I can get it on but it's cutting into my hips something awful. I would really appreciate any experiences anyone might be willing to share.
Title: Re: Harvoni Side effects
Post by: Lynn K on January 10, 2015, 06:36:44 pm
Hi Roger

"I don't understand why a specialty pharmacy would be hard to deal with. Can someone explain this to me?  They are getting paid to do some paperwork and get the pills into FedEx. Why should they hassle a customer?"

They are getting paid by the companies they provide the meds for to keep costs down. Express Scripts has been denying patients right and left for Harvoni stalling until Viekira Pak was approved so the could make the preferred provider and block Harvoni and Sovaldi.

They will still provide Harvoni for the patients who were already on Harvoni and those that cannot take Viekira Pak.

Basically the prescription drug providers are taking medical decisions out of the hands of doctors and putting them in the hands of bean counters.

Exclusive: Express Scripts presses for expansion of drugs it won't cover

http://news.yahoo.com/exclusive-express-scripts-presses-expansion-drugs-wont-cover-181705898--finance.html;_ylt=AwrTWVVZtrFU9HAAOfjQtDMD

Express Scripts drops Gilead hep C drugs for cheaper AbbVie rival
http://news.yahoo.com/express-scripts-cover-abbvie-hepatitis-c-drug-drops-050323412--finance.html;_ylt=AwrTWVVZtrFU9HAAWvjQtDMD


I was basically on the edge of angry, frustrated, tears asking if they were waiting for me to die of if they would prefer paying for the complications of advancing cirrhosis, a transplant and anti-rejection drugs for the rest of my life assuming I am able to get a transplant and survive the procedure.

Not a fan of express scripts

Title: Re: Harvoni Side effects
Post by: Roger on January 10, 2015, 09:27:41 pm
Lynn,
My point is, the Specialty Pharmacy gets their profit/commission no matter what (don't they?).  The insurance companies dictate what they will pay for (with our money) and if the insurance has said "ok", why the heck would a vendor care if the insurance decided to spend the money?  That makes no sense to me.
Title: Re: Harvoni Side effects
Post by: Lynn K on January 10, 2015, 09:56:36 pm
As I understand it the treatment protocols are established by the prescription drug providers. They are in fact insurance for prescription drug coverage.

I went several rounds and many phone calls with Express Scripts. One time the person on the phone at express scripts said it was BCBS who established the approved drugs. So I called BCBS they said no that is Express Scripts call. They are the contracted providers for providing prescription drug coverage (ie Insurance) they keep those that contracted them by happy keeping costs down thus maintaining their relationship and not fired and replaced by another prescription drug provider.

When I did finally get to someone in authority she said she is a manager at Express Scripts/Accredo. She was the one who approved my medicine. Not Blue Cross Blue Shield.

At least as how I understand it. There have been numerous posts by people fighting with their prescription drug providers to get Harvoni.

Doesn't make sense to me either
Title: Re: Harvoni Side effects
Post by: JoeK9999 on January 11, 2015, 06:00:55 am
List of my Side effects throughout treatment:
I am on my 12th and final week of Harvoni with 5 more pills to take.
I don't know for sure if these are Harvoni related, but this is what I experienced.

Week 1 - Had a tiny blister on thumb that turned into a huge blister and
red painful streaks ran up my arm through my lymph system. Doctor gave me 10 days  of Keflex which cleared it.
Weeks 2 through 6 - Felt great, no fatigue or stomach indigestion.
Weeks 6 - 9.5 - Fatigue and stomach indigestion.
Weeks 9.5 - through 11 - Felt pretty good. A little fatigue.
Week 11 through now - A lot of dizziness, a little fatigue. No more stomach indigestion. Just noticed red palms are not as pronounced. A note on reddened palms. I have 2 friends that are both cured from prior treatments and they still have reddened palms.
Title: Re: Harvoni Side effects
Post by: kate0b1 on January 11, 2015, 06:49:20 am
ahg @joek, I'm a little jealous you only have 5 days left, I can't even wait to be able to say that. Are you having labs @ EOT or just the 12 weeks out?
@audreywald, this may sound weird but could you try increasing your fiber in your diet, a few years ago my dog had some bowel issues and the vet said to try pumpkin, it has a crab ton (no pun intended) of fiber in it, I just mixed it with her food but maybe you could make muffins or something with it. Imodium gives me a stomach ache for some reason. I did however have a stomach ache yesterday, I think maybe from not drinking enough water (w/e coffee girl here), after i drank two glasses of water it went away.
@goodbyehepc, thanks for remembering the name of the movie for me, still some brain fog here lol.

kate
Title: Re: Harvoni Side effects
Post by: JoeK9999 on January 11, 2015, 07:46:41 am
Kate - I had a CBC and Hepatic Panel blood draw 2 days ago at the 11 week mark.
My next test is 12 weeks out after EOT.  We all go through the stress in the back of our minds, but it is based on different types of past treatment stats. My first month on Harvoni, I was on cloud nine with no doubt about a cure. The stress started half way through.

I feel like there is no reason why I won't be cured as I took every pill and that
that is how everyone one else on Harvoni should feel also. As long as you take all the pills and stay away from anything that could re-infect you or run your body down, then the cure is in sight!

If you really look closely at the results only <1% of the people that were followed relapsed. The rest in that group they showed as without SRV were "lost to followup". So no one knows what happened with them. Have a great day and a healthy life.
Title: Re: Harvoni Side effects
Post by: BG42 on January 13, 2015, 06:42:22 am
Hello everyone! All'a quiet on the thread!

I found out my delay in the insurance company approving comes from them telling my doctor they think I should have an 8 week treatment. Obviously they do not want to pay for another 4 weeks.

The good news is the ball is rolling, and at least I know I will at least be able to have an 8 week treatment. But I naturally worry that 8 might not be enough. I read that the guidelines for some insurance companies state that if your VL is under 6 mil, they will pay for 8 weeks of Harvoni. They will pay for 12 weeks if it is above 6 mil.

I apologize if this is the wrong thread for this question, but have you guys experienced exploring 8 weeks of treatment versus 12 weeks of treatment? Is anyone on 8?? I just don't want to do it "part way" and not be cured.
Title: Re: Harvoni Side effects
Post by: Lukey on January 13, 2015, 07:18:46 am
I'm on for 8 weeks. I think it was determined by my gastro MD for 8 weeks, based on my 5.1 million VL, general state of liver health, as well as possibly my weight. Ppl with cirrhosis need to be on it longer, I think.
Title: Re: Harvoni Side effects
Post by: JoeK9999 on January 13, 2015, 07:18:59 am
BG42 - I was initially supposed to go on the Harvoni 8 week treatment. At week 4, I was still detected which may or may not matter as many have reported detected at 4 weeks. And at least one at 6 weeks and still cured with 12 weeks treatment.
Also my VL was 3.8 million, gen 1a, but the pre-treatment VL test was done 3 month prior to treatment.

I was switched to the 12 week plan and now down to my last 3 pills.
There are many on this forum on the 8 week plan and I 'm sure the results will be great. My thinking is like yours and I didn't want to chance it, so I pushed for 12 and got it.
Title: Re: Harvoni Side effects
Post by: Lukey on January 13, 2015, 07:23:26 am
Joe, how has your blood work changed so far? UD yet? If so, when did you first get your UD status?
Title: Re: Harvoni Side effects
Post by: JoeK9999 on January 13, 2015, 07:34:35 am
Lukey - I am not getting another VL until 12 weeks after EOT.
Everyone in the trials were undetected at 8,12,24 EOT.
I also read one  S/O patient post that was <15  still Detected on the day of his last
medication and 3 months later was Undetected. I don't really care about anymore tests until the 12 week and 24 after treatment is over. Those are the only one's that count.
As I keep saying, if you take all your meds, and live healthy,there is no reason why you shouldn't be cured.
Title: Re: Harvoni Side effects
Post by: art1951 on January 13, 2015, 08:30:50 am
I took my last pill yesterday and had blood test drawn.  I will let everyone know if I see changes over the next few days as the Harvoni clears from my body.  I am still getting mild daily headaches but manage them with one or two Tylenol a day.
I should get the blood results within 5 days or so but was undetected at 6 weeks and don't expect much to change.
Starting the 12 week countdown to EOT results.
Thanks,
Art
Title: Re: Harvoni Side effects
Post by: Lukey on January 13, 2015, 08:41:48 am
Lukey - I am not getting another VL until 12 weeks after EOT.
Everyone in the trials were undetected at 8,12,24 EOT.
I also read one  S/O patient post that was <15  still Detected on the day of his last
medication and 3 months later was Undetected. I don't really care about anymore tests until the 12 week and 24 after treatment is over. Those are the only one's that count.
As I keep saying, if you take all your meds, and live healthy,there is no reason why you shouldn't be cured.

Congrats. I hope to be in your same status someday soon.
I live very healthy but I do seem to need my magnesium to help keep my bowels moving along. I'm hoping this will not affect my Tx.

Joe
Title: Re: Harvoni Side effects
Post by: jayme1017 on January 13, 2015, 09:10:14 am
Lukey,
I don't think you are supposed to be taking Magnesium with Harvoni..if you do they recommend 4 hours before or after the dose. Check with doc??!
Jayme :)
Title: Re: Harvoni Side effects
Post by: Lukey on January 13, 2015, 09:17:13 am
I take it at least 4 hours away from Harvoni. They know I take it.
I'll call Gilead and see what they say about it.

The trouble is, most people are woefully deficient in Magnesium, and it's not something I think we should avoid. It's possible the constipation I had was from Harvoni, I'm not sure.
Title: Re: Harvoni Side effects
Post by: jayme1017 on January 13, 2015, 09:24:13 am
oh sorry...obviously you would have checked into it :)
I have wanted to take something for my gaseous stomach lately which started at week 4 (one week ago) but have just avoided taking anything more because I am paranoid than anything else. I was told it was ok to take Tums, GasX, or immodium as long as it was 4 hours apart. I am hoping the gas is due to my improved digestive system now that my liver enzymes are in normal range...
Title: Re: Harvoni Side effects
Post by: mario555 on January 13, 2015, 09:24:57 am
To all the ones finishing their 8-12 weeks treatment. Please let us know your VL at week 4 and 12. I'm on week 9 out of 24 and would love to "foresee" what will happen!!
After 9 weeks I have no more strong side effects. I just  can't wait to be finished with the treatment...
Title: Re: Harvoni Side effects
Post by: JoeK9999 on January 13, 2015, 09:59:25 am
Mario and all:
For the last several years I have been
working on software project for the insurance industry. It's all statistical based
software to show risk. Two things I have learned: 1.) Insurance companies are only interested in increasing their profits.Customers come second.
2.) Based on the statistical information I work on, Harvoni's stats pretty well prove you will be cured if you take the pills for the required time frame.
You have to look at the available stats very closely. Included in the non SRV
are patients that were "lost to followup" and they were the most. In my work I would have just thrown them out completely, but Gilead included them in there overall %'s.
Anyone that doesn't get cured with this drug will be a medical marvel and only give the researchers more incentive to find the variables that were not considered and find a new method to cure the few medical marvels. Like someone else said in a previous post "I have never been in the top few percent of anything, why should anything change now?" I doubt we will see many if any medical marvels on this Harvoni forum as everyone here is dedicated to taking there meds and being cured:-)
Title: Re: Harvoni Side effects
Post by: Doluska on January 13, 2015, 10:04:25 am
Totally agree! Good post: we need more of this kind of info! Thank you!d
Title: Re: Harvoni Side effects
Post by: JoeK9999 on January 13, 2015, 10:17:00 am
The stats in tabular form are here:

http://www.gilead.com/~/media/Files/pdfs/medicines/liver-disease/harvoni/harvoni_pi.pdf
Title: Re: Harvoni Side effects
Post by: Mugwump on January 13, 2015, 11:35:41 am
I am on Harvoni 9 days. very tired, queasy, but the worst is ... lets just say I am wearing an adult diaper. Out of clean sheets.

Does ANYONE know id Imodium is safe? I called the people at support solutions and they told me to call my doctor. Which I will try but I just took 1 Imodium? they're really not adult diapers; I have a very chunky 11 year old autistic grandson who is not potty trained. I can get it on but it's cutting into my hips something awful. I would really appreciate any experiences anyone might be willing to share.
I would be very cautious about the use of Imodium on this treatment as holding back fluids if you are not experiencing dehydration is not a good idea. Yes let Gilead and your doctor help you make the decision.

I hope you get over it soon!  I did have one episode of the trots and because of the number of trips to the john to pass water I seriously considered temporarily getting a poo chair or at least a chamber pot to put next to the bed. Thank heavens my spouse is an understanding and caring individual as my sleep pattern is still out of wack.

Things are however getting better at week 6 and I am now capable of sleeping for more than 2-3 hours at a time.
I don't think this situation is directly due to Harvoni, but there is no doubt that the sudden extra hydration necessary for this treatment to work can change bowl movement frequency in some people.

Funny but as a child in the 1950's and 60's in some places we lived there were chamber pots, because heading out to the outhouse in winter was worse. So a step back in time dealing with difficulties can be very useful.

A more modern suggestion might be to get a portable RV style toilet that can be in the same room where you sleep if that might work for you.

Kind Regards
Eric

 
Title: Re: Harvoni Side effects
Post by: Bob V on January 13, 2015, 12:14:48 pm
Hi guys I posted this yesterday on my own thread but I guess I should of posted it here. Thanks for all the great input on this thread.

Add to the post I did 5wks labs today, so just waiting now to see if I'm UD.

 Bob V
Member
Posts: 10
 

My take on Harvoni day 35
« on: Yesterday at 12:06:04 PM »
QuoteModify
My 411
I'm 62 retired and have a low stress life. I'm an endurance athlete and spend most mornings swimming, biking or running. Knowing I was going to start treatment I cut way back on my training. I still SBR every morning but nice and easy.

I nap most afternoons. I'm very in tune with how my body is feeling, almost to an obsession. I take my Harvoni at noon every day. So I think my symptoms are most likely related to Harvoni.

Pre Harvoni on a 1-10 scale 10 feeling great, I was at 9-10 most days. Now I do get slight headache's but the biggest thing is the fatigue. I'm always tired and I feel like I'm coming down with a cold. This isn't a big deal because I can just do nothing if I want, my wife is great with this.

For the people who have to work, I know you have it tougher try and hang in there it's only 12wks. We can best this.

Good luck everyone.
-------------------
Dx hep non AB 1972, Hep C 1991
GT 1A
VL 3.7m
Liver B 1992, unremarkable
Liver ultrasound 2014, normal
Treatment Interferon 90's x2 failed
Started Harvoni 12/08/2014
 


Title: Re: Harvoni Side effects
Post by: dragonslayer on January 13, 2015, 03:49:06 pm
I would be very cautious about the use of Imodium on this treatment as holding back fluids if you are not experiencing dehydration is not a good idea. Yes let Gilead and your doctor help you make the decision.

I hope you get over it soon!  I did have one episode of the trots and because of the number of trips to the john to pass water I seriously considered temporarily getting a poo chair or at least a chamber pot to put next to the bed. Thank heavens my spouse is an understanding and caring individual as my sleep pattern is still out of wack.

Things are however getting better at week 6 and I am now capable of sleeping for more than 2-3 hours at a time.
I don't think this situation is directly due to Harvoni, but there is no doubt that the sudden extra hydration necessary for this treatment to work can change bowl movement frequency in some people.

Funny but as a child in the 1950's and 60's in some places we lived there were chamber pots, because heading out to the outhouse in winter was worse. So a step back in time dealing with difficulties can be very useful.

A more modern suggestion might be to get a portable RV style toilet that can be in the same room where you sleep if that might work for you.

Kind Regards
Eric

Can you please provide evidence for your statement that Harvoni requires extra hydration to work?  I see nothing about it in the detailed prescribing document, but maybe I missed something.
Title: Re: Harvoni Side effects
Post by: Lukey on January 13, 2015, 04:59:56 pm
oh sorry...obviously you would have checked into it :)
I have wanted to take something for my gaseous stomach lately which started at week 4 (one week ago) but have just avoided taking anything more because I am paranoid than anything else. I was told it was ok to take Tums, GasX, or immodium as long as it was 4 hours apart. I am hoping the gas is due to my improved digestive system now that my liver enzymes are in normal range...

Improved digestive system, that sounds like something I'd love to get, and I probably will sooner or later. I have fought a sluggish GI tract for years. Would love to improve it. :)
Title: Re: Harvoni Side effects
Post by: Lynn K on January 13, 2015, 10:37:06 pm
Hi Joek999

I sure hope it works for me the odds were in my favor on Sovaldi Olysio but I guess some aren't as fortunate as others.

With my history and plus the Sovaldi Olysio relapse I am on 24 weeks of Harvoni. After taking to my doctor we are going to add Ribavirin if my insurance will approve. so kind of a hybrid treatment right now 8 weeks of Harvoni done and whenever we can add the Riba all the way to the end of treatment with riba.

If I have the Riba next week that will be 9 weeks of Harvoni and 15 weeks of Harvoni Riba hopefully that will do something good.
Title: Re: Harvoni Side effects
Post by: Sweetie1 on January 14, 2015, 01:12:22 am
HI, I am starting month 3 on Harvoni. I had some headache/neckaches the first few weeks but these are better. I think the Harvoni may be constipating thus maybe causing the headaches. Cereal at night really helps. I had severe itching and it went away after about 2 weeks on Harvoni (amazing) I get very tired a couple hours after taking it. My nose is very congested though don't know if that is from the weather or the medicine. All in all very little to complain about. My 4 week blood test showed viral load undetectable. Hope it will still be that way 3 months after stoping. Good luck to everyone.
Title: Re: Harvoni Side effects
Post by: Mugwump on January 14, 2015, 01:13:09 am
Can you please provide evidence for your statement that Harvoni requires extra hydration to work?  I see nothing about it in the detailed prescribing document, but maybe I missed something.
The infectious disease specialists that are treating me told me specifically that 2 liters of water per day is the absolute minimum  while using Harvoni and they use the physicians info directly available from Gilead. So I will take their word for that.
I do not concern myself if I exceed the 2 liters as long as it does not come from a gallon or two of tea or coffee!

When I first started taking Harvoni it caused me to become dehydrated because I did not follow the recommendations on the first day or two thinking that I was drinking enough liquids with just tea and coffee.  It was a mistake as I became quite dry mouthed and anxious because of dehydration and a slight headache and lack of sleep. As soon as I started following the recommendations of the health professionals and drank more water the problems disappeared.

So I will keep hydrating myself carefully as it is working to moderate the known Harvoni side effects of "brain fog", lack of sleep, anxiety. I am not thinking of having a water pack with a tube attached to a back pack water jug and drinking water till my kidneys float off to Texas BUT a sensible increase in water intake seems to be the ticket for me, at least. 

Perhaps someone else has different advice from their doctors and specialists but mine all told me to drink more water on this med!

Regards
Eric
Title: Re: Harvoni Side effects
Post by: Mugwump on January 14, 2015, 01:16:13 am
HI, I am starting month 3 on Harvoni. I had some headache/neckaches the first few weeks but these are better. I think the Harvoni may be constipating thus maybe causing the headaches. Cereal at night really helps. I had severe itching and it went away after about 2 weeks on Harvoni (amazing) I get very tired a couple hours after taking it. My nose is very congested though don't know if that is from the weather or the medicine. All in all very little to complain about. My 4 week blood test showed viral load undetectable. Hope it will still be that way 3 months after stoping. Good luck to everyone.
Hello Sweetie1  and that is fantastic to hear! I too am having about the same experience with this med.
Title: Re: Harvoni Side effects
Post by: nicole_1234 on January 14, 2015, 02:41:28 am
Paul: I don't think you need water for Harvoni to work, it just dehydrates you so it's benefici to drink lots of water so you feel good, just like they say anytime you are sick.

Katie: I saw you wrote about sugar cravings. I started a diet a few days ago to deal with candida issues called the Body Ecology Diet and they recommended eating probiotic food such as cultured vegetables, kefir (milk, goat milk or my fav young coconut kefir) and apple cider vinegar (which I mix in a glass of water with 4 drops of stevia).

They say these foods relieve sugar cravings and they really did for me. Also if you can find stevia at the health food store it is very sweet and supposedly good for you. I haven't researched outside the book though. But a little goes a long way and you can put a couple drops in your tea or a smoothie and that might help me the craving.
Title: Re: Harvoni Side effects
Post by: Katie on January 14, 2015, 02:55:57 am
Thanks Nicole.  Candida is a difficult thing to deal with.  I had a horrible systemic case of it about 10 years ago.  I did pH tests and did the lemon fast and then did the probiotics and eventually got rid of it.  My acupuncturist/chiropractor was a big help too, so I wish you good luck with that.

I don't need the sweetener in my apple cider vinegar.  I just take it straight!  Always have loved vinegar and don't mind the little "shudder"..  HA!

I have just decided to clear the house of all sweets and just have fresh fruit available.  Seems to be OK but I actually get a bit anxious at night wanting sugar.  When that happens I just have a small bowl of good cereal with a little bit of banana or blueberries.  I am really working at it ( as I grind my teeth)  HA!
Title: Re: Harvoni Side effects
Post by: Mugwump on January 14, 2015, 03:42:41 am

I have just decided to clear the house of all sweets and just have fresh fruit available.  Seems to be OK but I actually get a bit anxious at night wanting sugar.  When that happens I just have a small bowl of good cereal with a little bit of banana or blueberries.  I am really working at it ( as I grind my teeth)  HA!

I hear you and sugar craving is a curse without a doubt. I purchased an inexpensive nifty cheap digital food scale to use for the duration of this treatment. The experience cooking for seniors with diabetes and other conditions taught me the importance of portion control and dietary balance in relation to levels of activity regardless of food groups.

It is much easier to use sensible portion control and a gentle approach to your dietary needs than to blame yourself for food cravings. Go easy on your hunger and your liver will thank you but do not intentionally starve yourself. I only eat a small portion if I start becoming weak as I have a BMI that is rather high and getting my liver to metabolize body fats is part of the equation for me. This is where drinking more water comes in, it definitely does help those of us who are overweight to adjust to a liver which all of a sudden is doing a more efficient job than it has done while it was heavily infected with HCV and therefore not working as well as it should.

Just my thoughts and an encouragement for those who are on this treatment and need to lose weight to remain healthy. Obviously if someones body mass index indicates malnutrition or is too low then your doctor should help you with dietary suggestions while on Harvoni or a combo therapy for that matter.

Healthy self discipline is not a dirty word even though the fast food industry is loth to endorse the concept! One of the funniest movies I have ever watched was "Supersize Me" http://www.imdb.com/title/tt0390521/

I often wonder why it was not banned in some states. LOL

Cheers and good health to all of us going though this treatment!

Eric





 
Title: Re: Harvoni Side effects
Post by: Sweetie1 on January 14, 2015, 10:46:30 am
Hi again, I just wanted to mention that everyone should also get the vaccination for Hepatitis A. It is a 2 dose vaccine a couple months apart. If you have any liver damage and get Hepatitis A it can be bad.
Does anyone else have this terrible congestion of the nose? Even some blood at times?
Title: Re: Harvoni Side effects
Post by: mario555 on January 14, 2015, 11:31:09 am
No congestion that I have read about. As for the bloody nose it might be related to dry conditions in your house. It's been really cold lately...
Title: Re: Harvoni Side effects
Post by: Bob V on January 14, 2015, 12:22:40 pm
Good morning everyone, it's still morning here in SoCal :)

As I posted yesterday I have fatigue everyday. My brother is also on Harvoni, week 6. Pre Harvoni he had generalized pain constantly, since starting Harvoni he is pain free. He was extremely depressed, talking to him now he's a different person.

A 411 on my brother, this is Hep c related
  He has issues with high T levels and had been to several docs, got we don't know, nothing we can do, etc. He found a research endocrinologist, this guy spent 1.5hrs with him and went over three years of labs. He told my brother that his labs were not normal because of trending..the docs missed several things. He told my brother that all of this is related to his Hep C and needed to get treated or all of this is for nothing.
This doc knows about Harvoni and put my brother on thyroid med to go with the Harvoni. This might also be a why he's pain free, who knows.

Title: Re: Harvoni Side effects
Post by: Bob V on January 14, 2015, 12:42:39 pm
Eric
This is great, I'm using it on my FB page.

"It is much easier to use sensible portion control and a gentle approach to your dietary needs than to blame yourself for food cravings."
Title: Re: Harvoni Side effects
Post by: audreywald on January 14, 2015, 03:56:57 pm
I honestly don't know if I am posting in the right place but I really need some feedback. I am on day 9 with Harvoni. The first week was very mild but I didn't go to the bathroom for 5 days. The nurse said I could try a little Miralax. Well now, to put it nicely, I am having to wear an adult diaper. I get no warning time. and I would rather wear this than constantly be changing and washing sheets and blankets. Also last night I got extreme vertigo and landed on my friends lap. My viral load started at over 15 million and I have had Hep C for around 40 years. Does anyone think that makes a difference as to side effects> Also can't eat but trying to stay hydrated. Has anyone been dealing with anything like this?
Title: Re: Harvoni Side effects
Post by: elizabethfaraone on January 14, 2015, 04:25:58 pm
By the way good news ; just got my 4 weeks viral load.... UND.....

Title: Re: Harvoni Side effects
Post by: elizabethfaraone on January 14, 2015, 04:33:20 pm
Health care in Canada covers visits to doctors and hospitalization. It doesn't cover medication. We have an overly generous welfare system that will pay medication to welfare recipients and prisoners. If you're not on welfare, you must rely on your own money or private insurance. So, if you need a new liver, they'll do the transplant for free.
In my case, I had planned the medicine expense 2 years ago in case I would not be covered. I was lucky to have my insurer cover 100,000 out of a 160,000 bill. Gilead covered the rest. I have nothing but good things to say about Gilead.
No provinces offer any kind of financial aid. If you're employed and have no insurance or if you're insured with the wrong company, you're screwed.
The state of health care is dependent on governments that change every 4 years. I don't think they give a hoot as to what happens to me.
It is so hard to get financed for medication that we are but a handful of us to be treated with Harvoni. If you are poor, or a bandit, you'll get the medication for free. So, if you can't contribute financially to society, governments will keep you healthy! For the ones paying taxes.... Good luck!

I think it is offensive that you are scapegoating the poor.  The poor don't deserve this kind of abuse but they do deserve treatment for their illnesses.  By the way, I am poor and you made this comment on my birthday.  I deserve to be healthy and to live.  It's sounds like you were helped out by charity, so how can you scapegoat anyone for getting assistance in attaining the medicine.  How would you like it if you were criticized for getting the charity you are getting from Gilead.  If you really thought the poor are better off, you would become poor and start living the life of Riley you believe the poor to be leading.  But deep down inside, you know you are wrong about the poor.  You just need to kick the dog when you come home from a stressful day.
Title: Re: Harvoni Side effects
Post by: dragonslayer on January 14, 2015, 04:40:53 pm
I think it is offensive that you are scapegoating the poor.  The poor don't deserve this kind of abuse but they do deserve treatment for their illnesses.  By the way, I am poor and you made this comment on my birthday.  I deserve to be healthy and to live.  It's sounds like you were helped out by charity, so how can you scapegoat anyone for getting assistance in attaining the medicine.  How would you like it if you were criticized for getting the charity you are getting from Gilead.  If you really thought the poor are better off, you would become poor and start living the life of Riley you believe the poor to be leading.  But deep down inside, you know you are wrong about the poor.  You just need to kick the dog when you come home from a stressful day.

According to what Mario says, sounds to me like the poor are more than taken care of, and its the un-poor the government are scapegoating!
Title: Re: Harvoni Side effects
Post by: Lukey on January 14, 2015, 04:47:50 pm
I honestly don't know if I am posting in the right place but I really need some feedback. I am on day 9 with Harvoni. The first week was very mild but I didn't go to the bathroom for 5 days. The nurse said I could try a little Miralax. Well now, to put it nicely, I am having to wear an adult diaper. I get no warning time. and I would rather wear this than constantly be changing and washing sheets and blankets. Also last night I got extreme vertigo and landed on my friends lap. My viral load started at over 15 million and I have had Hep C for around 40 years. Does anyone think that makes a difference as to side effects> Also can't eat but trying to stay hydrated. Has anyone been dealing with anything like this?

Do you think you're taking a tad bit too much Miralax? Can't you adjust the dose of it so you won't have to wear a diaper? The nurse said I could take Miralax too but I have not yet resorted to it. I have 1 BM daily, but yesterday I had 2. I have backed off the meat for now and am eating  mostly all plant foods. That certainly helps, and so does drinking lots of water. Avoid flour, fried foods, cooked cheese, etc. Get lots of fiber in vegetables and other plant foods. I would have tried that before resorting to a laxative.
I very seldom go a day without having a BM. I make it a point to keep my bowels moving. Anything less than 1 BM a day is what I'd call constipation.

Joe

Title: Re: Harvoni Side effects
Post by: audreywald on January 14, 2015, 04:57:15 pm
Oh, I quit the miralax a week ago. I guess it's still working though.
Title: Re: Harvoni Side effects
Post by: Lukey on January 14, 2015, 06:03:06 pm
Oh, I quit the miralax a week ago. I guess it's still working though.

Hopefully you'll get over that soon. Harvoni is supposed to cause "D" too but it doesn't with me, at least not yet.
Title: Re: Harvoni Side effects
Post by: Katie on January 14, 2015, 06:50:48 pm
Audrey:  How miserable!  Maybe you were coming down with an intestinal problem or had a reaction to the Miralax.  Seems some are having more issues with constipation than the side effect listed of diarhea.  Try to break the cycle and eat!  If you are only drinking, especially fruit juices you will continue to be "loose".  Oatmeal, brown rice and salads would probably be good, and scrambled eggs for protein.  You also can take white rice with 2X the amount of water and make a thick gruel so it is actually partially digested and really easy on your tummy.  You can add a little broth or fruit to it an I liked it with just a tad of soy sauce.  I had GI issues a few years ago.  Bananas are good too and of course probiotics!  Take care as it can be dangerous and dehydration can sneak up on you.

Updated as I responded to Lukey instead of Audrey.  Sorry about that.

Katie
Title: Re: Harvoni Side effects
Post by: Deborah on January 14, 2015, 07:04:11 pm
I started taking Harvoni on December 12 (8 weeks) and started my second bottle this week. Seeing the doctor tomorrow for first labs.  The first couple days were a bit odd, because I was stressing about possible side effects, but once I adjusted my food & water intake I was good to go.  I need to eat smaller meals, and drink 100% more water than usual (and I already drink a lot of water).  If I don't drink enough I quickly start feeling really bad -- nauseated and light headed.  The good news is that as soon as I start drinking I feel better.  I eat my pill as I'm climbing into bed, around 11:00, and wash it down with a large glass of water.  Then as soon as I get up in the morning I start drinking water.  I am an insomniac anyway, but most of the time I now sleep really hard and dream a lot.  And my energy level is far better than it's been in years!  Also, I find my eyes are a bit more light sensitive.  For people who are experiencing nausea and light headedness, I would suggest you dramatically increase your water intake.  Hydration is SO critical with this drug! 

 
Title: Re: Harvoni Side effects
Post by: Katie on January 14, 2015, 07:22:09 pm
Deborah!  Welcome to the forum.  It has been so beneficial to me!  I am hitting the half way mark with tonight's pill at 42 days!  The weeks are flying by and I am feeling exactly the same as you.  Sleeping good after years of being sleep deprived (which all my friend said was "old age") and the horrid fatigue is gone.  I may get tired, but it is just tired, not that weak, painful feeling of not wanting to put one foot in front of the other.  I am feeling like my "spark" is coming back and my brain is clear and working again and I find JOY in simple things. 

Good luck on your blood work and keep us posted.  Feeling like you do, you just know the outcome is going to be amazing!!!!

Katie
Title: Re: Harvoni Side effects
Post by: mookie5150 on January 14, 2015, 07:29:14 pm
Just got back my first blood work after just 3 weeks on Harvoni and my viral load in undetectable! Granted I did have a relatively low viral load to begin with - 200,000 but the virus has taken its toll on my body and liver for decades. My last biopsy had me at fibrosis stage 3 and that was 3 years ago. I feel so blessed and happy that at 56 I now have hope for a healthy and vibrant golden years! Good Luck to all.
Title: Re: Harvoni Side effects
Post by: kate0b1 on January 14, 2015, 07:31:32 pm
Happy half day katie

kate
Title: Re: Harvoni Side effects
Post by: kate0b1 on January 14, 2015, 07:32:21 pm
mookie, congrats, I go friday for my 4 week labs.

kate
Title: Re: Harvoni Side effects
Post by: BattleTheBeast on January 14, 2015, 07:49:51 pm
Mookie,

That's great news! It just makes me so happy when I see how well everyone is doing and the minimal side effects. I mean really, if we eat right and drink tons of water it totally makes a huge difference and that's pretty easy to do. I am so grateful to have these new drugs available and I hope everyone who needs them can get access to them sooner rather than later.

It's no fun getting hit with Hep C and Stage 4 and then realizing this is the reason you haven't felt good for such a long time. What is fun is the fog lifting and the word undetected and knowing that one day soon we will all be rid of this nasty beast.

Hooray for all of us!

Mel
Title: Re: Harvoni Side effects
Post by: Katie on January 14, 2015, 08:19:23 pm
Mel...I love your posts.  They are uplifting for everyone.  Thank you!

Kate...Thank you and good luck on your results.  I just know they are going to be AWESOME and we will all celebrate and remember you are only 1/3 of the way through, so if you are not UD it isn't the end of the world.

Mookie:  YAY...what incredibly wonderful news.  It is so wonderful to see everyone coming along so well and just think only 3 months have gone by since Harvoni was available.

Here is to healthy livers detoxifying our bodies and giving us the good health we deserve!

Katie

Title: Re: Harvoni Side effects
Post by: BattleTheBeast on January 14, 2015, 08:33:01 pm
Hi Katie,

Thanks, I really try to be positive and the days I can't well I just read what everyone else is saying and realize how lucky I am, take a few really deep breaths, try and get a good nights sleep and hope tomorrow is better for me.

Life can be a real roller coaster and some days you just have to hang on and go with it. Took me a really long time to learn to stop fighting and enjoy the ride, there's always something good if you really look hard enough.

For me yesterday stunk (my own fault because I didn't eat right) so I decided to go on Kiva and find someone I could help and so I made a loan to someone in another county who is trying to get their certification to become a primary teacher. http://www.kiva.org/lend/825002 (http://www.kiva.org/lend/825002) It wasn't a lot of money but hopefully it will help her finish her education and then she can use it to help others. That made me end my yucky day in a good way and today I woke up and was feeling much better. Sometimes we have to lift ourselves!

I appreciate all of you so much, way more than you know. Believe it or not I actually tend to isolate and this forum and all of you brings me back to the real world outside of work.

Hope you all have a great night.

Mel
Title: Re: Harvoni Side effects
Post by: wa7uib on January 15, 2015, 06:40:56 am
Thank you everyone for all of your post and sharing your experience with the new wonder drug Harvoni. It has been very helpful to me. I am a newbie here and to the harvoni treatment. I am about 2 weeks into it now. Just thought I would let you al know that at first I experienced the fatique, and being sleepy after taking my morning dose of Harvoni. About 12 days into it my fatique went away totally. I never got any headaches. And now I seem to have no side effects at all. I am on only a 8 week regiment at this point. We will see how my bloodwork looks as i progress to see if I need to try to stay on them longer. I also have a chronic skin disorder on my hands called PCT that is usually caused by Hep C. I have noticed that my sores and blisters have regressed to the point of just the old scarring from the sores I had. Havent seen any new ones thusfar. Very happy about that. So let's dont give up hope. Thanks again to all that share their situations here on this forum.
Title: Re: Harvoni Side effects
Post by: BattleTheBeast on January 15, 2015, 07:54:43 am
Hi Wa7!

Welcome, really appreciate you sharing.

I am so happy your PCT is becoming a thing of the past and that your side effects are getting better. It's a journey we are on and an amazing one at that. Twelve months ago everyone was still on Interferon unless they were lucky enough to get into a clinical trial with the new medications. Twelve months ago maybe 50% of us had the chance to reach SVR24, today it's upwards of 90% for GT1's and its just going to get better. (I am not sure of the other GT stats because I only have enough brain left to understand whats happening with mine right now)

Anyway so glad you found us and we look forward to you sharing your journey and helping us hold each other up through it all.

Mel
Title: Re: Harvoni Side effects
Post by: HHburme on January 15, 2015, 11:00:46 am
4 week labs are in........UND !!!   
Title: Re: Harvoni Side effects
Post by: BattleTheBeast on January 15, 2015, 02:14:51 pm
Hooray!!!!!!!!!!
Title: Re: Harvoni Side effects
Post by: JillLynn on January 15, 2015, 03:04:03 pm
Hi Guys! Been a while and I see familiar faces and new ones.    Good to see you all!

Just had my 12 week blood test and my liver enzymes are once again normal (thankful) and am waiting on the UNDETECTED 12 week test from Harvoni.      I'm feeling very tired but not sure if it's from the Harvoni or the -20 in Duluth on my owl and wildlife viewing trip.   It was fantastic being immersed in nature the last 8 days and not thinking about anything other than drinking water and peeing in the road because we have to drink so much water on this stuff and there are no bathrooms.  It all worked out beautifully!!   

I will believe my Hep C is truly gone once I'm "one year" virus free.   Because my 2nd time on treatment which was supposedly so successful came back at the 9 month mark.  Of course I'm thinking positive and feeling like its gone....but because of my past history with treatments.......I won't celebrate like I did the last time until 12 months goes by.   Then LOOK OUT WORLD I'm going to write it in the sky!!!!
   
     But that doesn't mean I won't be celebrating every day in the meantime, because every virus free day is truly a gift in my book!

much love and prayers to all!  Jill
Title: Re: Harvoni Side effects
Post by: Katie on January 15, 2015, 04:49:50 pm
Jill Lynn!  I am SO happy to read your post and was wondering if you were on you nature jaunt!  What a great thing to do to celebrate your end of treatment and you are BRAVE going out in the Minnesota winter.  This year has been a bad one.  I have family in Minn. on FB and they have kept me informed on weather, as SSE Alaska has had 40-50 degree weather (and LOTS of rain) for all but 2 weeks this year.  Really unusual.  We are normally milder here on the panhandle since we are coastal and farther south, but this is downright weird.  Peeing in the woods is a common practice in Alaska, so you'd fit in well here!  HA!

Did you, or are you planning to go to the raptor clinic in St. Paul?

Just to update you, my 4 week test came back with VL at 59 so I am totally excited with that result and so is my doctor.  I hit my 1/2 mark last night with my 42nd pill and the time has flown by so I am excited for my 12 week blood work.  With so many getting UD at 4 weeks, I sometimes feel a slight worry creep into my thoughts but then go back to my knowledge of the virus and know I am doing great and marvel at the wonders of science and Harvoni.

Good hearing from you!

Katie


Title: Re: Harvoni Side effects
Post by: mario555 on January 15, 2015, 05:11:13 pm
Congrats! It must be a hell of a relief to be finished! I am at week 10 out of 24 and I just can't see the end!
As for peeing in the trail... If you get lost you can always use the yellow spots to find your way back!! Good use of your newfound health!
Title: Re: Harvoni Side effects
Post by: kate0b1 on January 15, 2015, 06:22:16 pm
you can't see the pee, it's to watered down lol you will have to use bread crumbs

kate
Title: Re: Harvoni Side effects
Post by: Mugwump on January 15, 2015, 06:27:49 pm

   
     But that doesn't mean I won't be celebrating every day in the meantime, because every virus free day is truly a gift in my book!

much love and prayers to all!  Jill

Thanks and ditto on the prayers
Eric
Title: Re: Harvoni Side effects
Post by: Katie on January 15, 2015, 06:30:02 pm
Welcome newbies!  Congratulations on all those with UD results.  It warms my heart to see the good results so many are having!

I just wanted to let everyone know I posted a couple things on "On Hepatitis C treatment/ Starting Harvoni" thread to explain, very generally, how a virus works, in case you are interested.  It is just my simplistic way of trying to understand this monster and thought it might be beneficial.  If it is too much information for you, I certainly understand, but for me, the more I know the better I feel.  Some others liked getting the information so I wanted to let you know.

Katie
Title: Re: Harvoni Side effects
Post by: Katie on January 15, 2015, 06:30:45 pm
LOL...Kate...isn't that the truth!
Title: Re: Harvoni Side effects
Post by: kate0b1 on January 15, 2015, 06:41:14 pm
PS katie, thanks for the information, you can never know to much. AND I'm so ready for my labs tomorrow i downloaded the app so i will get them as soon as they are in !!
kate
Title: Re: Harvoni Side effects
Post by: Katie on January 15, 2015, 06:47:53 pm
Kate...I'll be thinking of you and am excited for you too!  More Happy Dances!!!!  WoooHooo!
Title: Re: Harvoni Side effects
Post by: nicole_1234 on January 15, 2015, 08:21:39 pm
Wow your stories are so inspiring. So many survivors and fighters!
Title: Re: Harvoni Side effects
Post by: Katie on January 15, 2015, 08:37:37 pm
I honestly don't know if I am posting in the right place but I really need some feedback. I am on day 9 with Harvoni. The first week was very mild but I didn't go to the bathroom for 5 days. The nurse said I could try a little Miralax. Well now, to put it nicely, I am having to wear an adult diaper. I get no warning time. and I would rather wear this than constantly be changing and washing sheets and blankets. Also last night I got extreme vertigo and landed on my friends lap. My viral load started at over 15 million and I have had Hep C for around 40 years. Does anyone think that makes a difference as to side effects> Also can't eat but trying to stay hydrated. Has anyone been dealing with anything like this?

I commented for you but addressed it to Lukey instead of you.:(  please scroll back as I updated it.  There may be helpful info for you as I have had GI problems in the past.  Hope you are doing better.

Katie
Title: Re: Harvoni Side effects
Post by: audreywald on January 16, 2015, 12:31:03 am
Hi Mario

Sure I understand your thoughts trying to reassure people that treatment is not a big deal and super happy for you that you are feeling great!

You just had me worried when you made the remark about a 1/2 glass of wine. I too looked longingly at having a sip of Champagne but my better half said not gonna happen which is for the best so I toasted the new year with sparking Apple juice.

Ah well it is what we must do if we want to hang around the planet for a while longer.

Best to you and yours Happy New year
Lynn
Title: Re: Harvoni Side effects
Post by: Deborah on January 16, 2015, 12:34:53 am
I love harvoni!!  Just got my 3 week blood results = undetectable!  I'm now at week 5 and on the home stretch.  Virtually no side effects but elevated BP and constantly drinking water to keep the hydration up and nausea/fogginess down.  Great energy and sleeping decent.  Walking on air tonight!
Title: Re: Harvoni Side effects
Post by: audreywald on January 16, 2015, 12:45:59 am
I started Harvoni on January 1st. Seems kind of cool date to start, right? Viral load was over 15 million and have around 3plus cirrhosis. I cannot believe how quickly this all went down. I will be a 24 weeker as I have a lot of cirrhosis, high VL and have probably been sick with this dragon for 40 years. So I think they really rushed it through. I see my doc on Feb 2nd and then I will get my first blood test. Am I expected to have cleared the virus at this time? Does it mean I will not likely clear it at all? For me they said if it gets down to 15 I will be considered cured. My stomach hurts all the time (it has been for quite awhile) and I have very little appetite. I won't lie, reduced appetite always pleases me as I need to lose some weight. I take an anti anxiety pill at night to sleep. Can anyone explain ALT and AST and the other things you guys mentioned, like bilirubin? Like what they are and what they do for the body? BTW, I live in a small town in Arkansas now and see Dr. Matt Garner in Jonesboro. He seems like a fine Dr. to me. Any other Arkansas people out there?
Title: Re: Harvoni Side effects
Post by: Katie on January 16, 2015, 12:47:52 am
WooooHooo Deborah!  What great news.  It is a wonderful feeling and almost unbelievable, huh?

HepC has met it's maker.  What a blessing and so many people don't understand what a HUGE deal this is.  We Do!

Katie
Title: Re: Harvoni Side effects
Post by: Katie on January 16, 2015, 01:07:33 am
Can anyone explain ALT and AST and the other things you guys mentioned, like bilirubin? Like what they are and what they do for the body?

Hi Audrey,

AST-ALT are enzymes which aid some chemical activities within cells of the muscle, liver and heart.  Evidently when there is something wrong with any of them the injured area can release these enzymes into the blood stream, so if they are elevated it indicates something is wrong.  It is a signal for the doctor to run additional tests and it is a common sign for Hep C.

Bilirubin is waste from natural breakdown of the red blood cells which happens in the liver and is excreted by the bile ducts and gall bladder.  Elevated levels are usually due to liver disease or blocked bile ducts.

There may be more on that but that is what I'velearned since diagnosed with Hep C.

Sorry your stomach is still giving you problems.  Be sure to talk to your doctor about it as it could be something unrelated to Hep C.  You may need to have some probiotics to help get your natural flora back since the bowel issue and please try the gruel from white rice.  You just cook up rice with 2X the water and simmer it until it is like baby food.  You can add  things to it for flavor such as fruit or broth and I like it with just a little soy sauce.  It helped my tummy a few years ago when I had some digestive issues.  Bananas are good too.

Many are UD at 4 weeks but I came in at 59 and feel great about it.  As long as the viral load drops at a fast rate, you are responding and more than likely will be cured...in fact 98% likely. Some aren't UD until their 12th week so don't get discouraged!

Hope you feel better!

Katie
Title: Re: Harvoni Side effects
Post by: Lynn K on January 16, 2015, 01:11:34 am
One more thing on bilirubin elevated levels fo bilirubin is what caused people with severe liver damage to turn yellow.

Jaundice is yellowing of the skin and eyes. This condition forms when there is too much bilirubin in your system. Bilirubin is a yellow pigment that is formed by the breakdown of dead red blood cells in the liver. Normally, the liver gets rid of bilirubin along with old red blood cells.
Title: Re: Harvoni Side effects
Post by: Katie on January 16, 2015, 01:17:33 am
Absolutely Lynn.  Thanks for adding that.
Title: Re: Harvoni Side effects
Post by: mario555 on January 16, 2015, 08:56:22 am
And a tiny addition about the 4 weeks test into your treatment. 4 weeks tests are not indicative for a cure! It is more a check up to make sure the product works! Even if you have let say 100 for your VL, it means millions of viruses have died. The product killed everything except 100 swift ones! In the following weeks those viruses will also die.
Higher up in these posts, there was a discussion about statistics. It was explained that if you don't get cured, you'd be a wonder of nature! The 2-3% not cured include the ones that didn't finish the treatment, the ones that got lost in follow up, the ones who didn't take the medication properly, etc... Being on 24 weeks will ensure all the little screw-ups you might do in treatment will be lost on the shear number of pills taken (168 pills!). Harvoni punches through everything if taken long enough! Don't worry, be happy! You have a miracle pill that will do the trick! I'm starting my tenth week out of 24 and whatever side effects I've had is now my 'normal state' and with the help of this group, I'll finish the full treatment!
As for stomach issues, be careful not to eat crap, you will have stomach troubles if you do!
Finally as the weeks of treatment pass, I have noticed that your nutrition will improve naturally. You'll hesitate in eating crappy food and it will come naturally! I am 5 pounds lighter and I had none to lose! Good luck to all!
Title: Re: Harvoni Side effects
Post by: PressBella on January 16, 2015, 10:26:30 am
Hi, I've only been on my Harvoni treatment for a 2 days, but I've noticed tha I'm very irratable and a little anxious.  has anyone been feeling these side effects?
Title: Re: Harvoni Side effects
Post by: nicole_1234 on January 16, 2015, 10:54:03 am
Yes PressBella, but for me they subsided after a few weeks. I'm on week 6 and it's really quite easy now. My remaining side effect is a little fatigue sometimes and a slight headache when I wake up but it goes away with a glass of water.

If you scroll through my posts you see I was very anxious and even took Ativan for a couple weeks. To me, I believe it was just the medicine demolishing the Hep C.
Title: Re: Harvoni Side effects
Post by: PressBella on January 16, 2015, 11:07:25 am
Thank you so much.  My husband is in Afghanistan and its a little frightful with this anxiety and dealing with it alone.
Title: Re: Harvoni Side effects
Post by: mario555 on January 16, 2015, 11:32:16 am
You are not alone! We are a bunch of battle weary soldiers! You'll get high class support with the group! As for the anxiety, I did have some during the first few weeks but I took a couple of valium here and there and it did the trick!
Title: Re: Harvoni Side effects
Post by: PressBella on January 16, 2015, 11:37:22 am
Yes, this group is so helpful.  I don't feel alone with dealing with this right now.  Just knowing I have the group helps alleviate a lot of stress. 
Title: Re: Harvoni Side effects
Post by: JillLynn on January 16, 2015, 11:50:29 am
Hi Katie! the wx  concerns me too...especially for the wildlife.       Hi Kate.....haha about the bread crumbs....and so true about non-yellow pee!  :) :)
 Now that I'm home I'm not doing in the road or paths anymore Mario....back to civilization for the moment!  AND 20 in Detroit has never felt better :)

Still waiting for my 12 week viral load results.   I didn't know harvoni caused :diarrhea:   my friend and I thought it was from my vegan lifestyle going a bit awry in Duluth....good to know it was from the Harvoni.   Getting a little better everyday.   

Boy when I think back on the harvoni journey I'm just amazed at this new treatment.   If I hadn't started zoloft (antidepressant) one month prior to learning I was going to kick my hep C's butt,  I'd have had NO side effects.   Those 2 drugs did NOT mix well at all.     So if you are on an antidepressant this could be making you feel nauseas and abdominally sick....it sure did me and also increased my liver enzymes.     Once I weaned off....no more problems at all.

2015 is our year friends!    For those of you doing treatment for the first time,  I'm thrilled you have such better chances than us old timers did in the past at curing this. It's a remarkable time really!

love, hugs and positive thoughts to you all!       



Title: Re: Harvoni Side effects
Post by: Mugwump on January 17, 2015, 05:51:02 am
Hi Audrey,

AST-ALT are enzymes which aid some chemical activities within cells of the muscle, liver and heart.  Evidently when there is something wrong with any of them the injured area can release these enzymes into the blood stream, so if they are elevated it indicates something is wrong.  It is a signal for the doctor to run additional tests and it is a common sign for Hep C.

Bilirubin is waste from natural breakdown of the red blood cells which happens in the liver and is excreted by the bile ducts and gall bladder.  Elevated levels are usually due to liver disease or blocked bile ducts.

There may be more on that but that is what I'velearned since diagnosed with Hep C.
Yes bilirubin is naturally produced by the liver for the purposes of digesting food and contains a balanced quantity of hydrochloric acid necessary for digestion. Essentially the liver is also a wonderful recycling plant as well as a chemical factory that needs to be free from impediments like HCV that kill off too many cells and people! Again it is a question of how well the functions are balanced, while the human might need sleep the liver never does, it works and functions 24/7.

So if during Harvoni treatment you are inconvenienced by having to discharge urine which is part of the way the body disposes of excess bilirubin then this is a very small price to pay indeed for the chance to kill off HCV in your system!
Quote
 

Sorry your stomach is still giving you problems.  Be sure to talk to your doctor about it as it could be something unrelated to Hep C.  You may need to have some probiotics to help get your natural flora back since the bowel issue and please try the gruel from white rice.  You just cook up rice with 2X the water and simmer it until it is like baby food.  You can add  things to it for flavor such as fruit or broth and I like it with just a little soy sauce.  It helped my tummy a few years ago when I had some digestive issues.  Bananas are good too.

Many are UD at 4 weeks but I came in at 59 and feel great about it.  As long as the viral load drops at a fast rate, you are responding and more than likely will be cured...in fact 98% likely. Some aren't UD until their 12th week so don't get discouraged!

Hope you feel better!

Katie
Thanks for the detailed description of the bio-chemical mechanisms at work.

I hope you don't mind what I have added in as a comment because the suppositions I have added are pure logic at least in my mind.  I do not at all mind if others who are trained in logic and bio-science interject by correcting any false assumptions that I may have made.

GREAT POST  KATIE!

Eric
Title: Re: Harvoni Side effects
Post by: BG42 on January 18, 2015, 07:37:54 am
Looks like just two days ago, AETNA and Gilead reached an agreement to discount pricing of Harvoni. This comes out now, while Aetna is working to pre-certify me for Harvoni!

http://news.aetna.com/aetna-gilead-agree-discount-pricing-hepatitis-c-drugs/

I feel like we are right there at the very beginnings of seeing millions of people cured from this disease!


Title: Re: Harvoni Side effects
Post by: Yorocco25 on January 18, 2015, 11:10:18 am
Hello everyone! Tonight will be 13 for me. The last 2 nights I have had really bad shivers. Similar to those of the interferon/riba tx. Has anyone else had these side effects?
Title: Re: Harvoni Side effects
Post by: dragonslayer on January 18, 2015, 05:33:37 pm
I just got my six week draw last week it showed <15 still detected

I'm a little confused.. Isnt a quant rna reading of <15 usually considered UNdetected?
Title: Re: Harvoni Side effects
Post by: BattleTheBeast on January 18, 2015, 06:21:33 pm
Hi Yorocco, BG and Pressbella,

So happy that you found us! I am even happier that you are on your way or soon to be on your way to SVR with Harvoni (our magic little orange pill).

We are all so lucky to have these new treatment options available to us and it's so great we have these amazing new drugs that give us more than a 90% chance of obtaining SVR.

Drink lots of water, eat as healthy as you can, exercise when you feel up to it, don't take any other medications or vitamins without checking with your doctor. Post your questions and your successes, hold each other up on the bad days and just know you aren't alone on this journey. There are tons of great articles and stories on the Home Link that can also help you along the way http://www.hepmag.com/ (http://www.hepmag.com/)

Looking forward to seeing all the SVR's in 2015!

Mel

Here's the link to check drug interactions:  http://www.hep-druginteractions.org/interactions.aspx (http://www.hep-druginteractions.org/interactions.aspx)
Title: Re: Harvoni Side effects
Post by: Lynn K on January 18, 2015, 08:42:56 pm
Hi Dragonslayer

My lab report has this note about results

HCV RNA BY RT-PCR, QUANT - Details
HCV QNT TEST INFO   See Notes   See Below
The quantitative range of the assay is 15 IU/mL to 100 million IU/mL
using COBAS(R) TaqMan(R) HCV test, v 2.0. The limit of detection (LOD)
and lower limit of quantification (LLOQ) for this assay is 15 IU/mL.
Results less than the quantitative range of the assay will be reported
as "HCV RNA detected, less than 15 IU/mL"


 Basically too few to count but still detected
Title: Re: Harvoni Side effects
Post by: dragonslayer on January 18, 2015, 10:17:57 pm
Hi Dragonslayer

My lab report has this note about results

HCV RNA BY RT-PCR, QUANT - Details
HCV QNT TEST INFO   See Notes   See Below
The quantitative range of the assay is 15 IU/mL to 100 million IU/mL
using COBAS(R) TaqMan(R) HCV test, v 2.0. The limit of detection (LOD)
and lower limit of quantification (LLOQ) for this assay is 15 IU/mL.
Results less than the quantitative range of the assay will be reported
as "HCV RNA detected, less than 15 IU/mL"


 Basically too few to count but still detected

Thanks Lynn,
So, when its considered Undetected, I presume the count is also < 15IU/ml, only it reads UNdetected?  I was confused because, if 15iu/ml is the bottom limit of detection, then I would have thought if you measure less than that, youd be considered undetected.. Weird..  Im having an EOT viral load blood draw on Wed, and thought if I measured < 15, Id be ok.. But I guess Id better be hoping for that AND UNdetected as well, as Ive just learned they are NOT the same.!   Or if youre undetected, does the report dispense with the '<15iu/ml' note, and simply report, 'UNdetected'?  thanks for the info...
Title: Re: Harvoni Side effects
Post by: Lynn K on January 18, 2015, 10:28:54 pm
I guess qualitatively the virus can be detected but quantitatively they can out count them because it is below the tests ability to determine.

So quantitative think quantity. For qualitative think quality.

Or said otherwise they can detected the presence of the virus but because there are so few they cannot tell how many in a given volume of blood 3, 5 maybe 14 IU/mL but less than 15 IU/mL

When it is considered undetected is when the test cannot detect the presence of the virus at all. Which because of the limits of testing and my experience having relapsed after being a UND at 4 weeks Sol Oly this still may not mean there is not one single virus particle present again just below the tests threshold to detect.

Hope that helps
Title: Re: Harvoni Side effects
Post by: Lynn K on January 18, 2015, 10:36:34 pm
This is what my last result said

HCV RNA RT-PCR, QT   See Notes IU/mL   See Below
HCV Not Detected
Title: Re: Harvoni Side effects
Post by: dragonslayer on January 18, 2015, 10:44:58 pm
Wow Lynn.. thats a great explanation.. So what we all hope for is 'Not Detected', not, '<15IU/ml'.   Nothing with this disease appears simple or straight forward!  I know there is a rna Qualitative test, as well as the Quantitative test..   And Ive read that the Qual test is more sensitive and can detect below 15, but wont come up with an actual number... And that the Quant test can only measure down to 15... There's the rub. I had assumed that, if you had less than 15IU/ml, youd be considered, by that Quant test, to be undetectable, since by definition, it cant read any lower.  But I guess I would have been wrong!
Title: Re: Harvoni Side effects
Post by: Lynn K on January 18, 2015, 10:48:36 pm
I only know what my test and the notes say as reporters by lab corp other labs may report their results differently which of course only adds to our confusion

Title: Re: Harvoni Side effects
Post by: Katie on January 18, 2015, 10:50:35 pm
Hi Lynn and Dragon,After reading your posts I checked my reports and the sensitivity varies.
My most current one listed < than 12 and indicates the virus is detected but is not quantifiable.
 
In 2013 it is < 43 (different lab)
 
2012 same lab and same limit of <43 but they ran a more sensitive test which doesn't give the viral load and it is <5. They ran this by mistake as it is for those on treatment whose level has dropped down and is called a quantitative TMA.
 
In 2009 the range was less than 49.

My fist quatitative RNA PCA was listed as ultra sensitive and the lower limit was 10.

So there is differences in their limits and probably depends somewhat on the lab used.  Since my labs are sent out, in 2006, it was Oregon and more recently Peace Health in Vancouver, Washington and a couple from Quest Diagnostics.

It gets confusing but I am sure their techniques are constantly improving.

Lynn:  Your post with the explanation is good and don't know why I posted this but it does show there are test with different limits out there.

Katie
Title: Re: Harvoni Side effects
Post by: Lynn K on January 18, 2015, 10:53:39 pm
Yes a good example of other labs but yours did say less than 12 detected so like I was saying detected but not quantifiable exactly as your most current report says
Title: Re: Harvoni Side effects
Post by: dragonslayer on January 18, 2015, 10:55:02 pm
Thank you Katie for chiming in.   Maybe the mods will post a definitive explanation of how to interpret the various Quantitative and Qualitative lab results all of us are seeing.. Lynn, your postings and examples were really helpful.  Thanks.
Title: Re: Harvoni Side effects
Post by: Katie on January 18, 2015, 10:55:28 pm
My last VL was 59 so I have never been under the limit.
Title: Re: Harvoni Side effects
Post by: Katie on January 18, 2015, 11:00:54 pm
Yes a good example of other labs but yours did say less than 12 detected so like I was saying detected but not quantifiable exactly as your most current report says

Definitely Lynn and that's why it is so important to continue treatment as those little buggers can be hiding out and start replicating again. Sure hope my 12 week EOT comes back UD but I'll feel better when I am 6 months completed and still UD. 
Title: Re: Harvoni Side effects
Post by: Lynn K on January 19, 2015, 01:53:54 am
Hi Katie

From everything I have seen once you become UND on treatment you will stay that way. At least in the trials there were no breakthrough failures only relapse failures.

So onward to SVR 12 for us all
Title: Re: Harvoni Side effects
Post by: Katie on January 19, 2015, 02:16:52 am
Thanks for that Lynn.  I must have misunderstood. I thought if the detectable limit on the test was 15 or 12 or 5, or whatever, that was considered undetectable for that test however since it couldn't test to zero, you may have a relapse where it started to replicate again and that's why they do a check well after the 12 weeks.

I would hate to think I was cured and then have it pop back up again so it is a very important distinction.

I thought I read that on a Hepatitis site but am not going to hunt it down at this point.  Guess I've been giving out wrong info and I hate doing that.
SVR!12  HoooRAH!   >:(

Thanks,

Katie

Title: Re: Harvoni Side effects
Post by: Lynn K on January 19, 2015, 02:43:20 am
Hi Katie

I showed as HCV not detected last year on Sovaldi Olysio at week 4, not "HCV RNA detected, less than 15 IU/mL". Same result at EOT, HCV not detected which was 12 weeks after I started so in June. But when we did the SVR 12 test in September I was found to have relapsed and my viral load was essentially the same as before treatment 6 months earlier.
My results from 9/3
HCV RNA RT-PCR, QT        2422260

HCV LOG 10    6.384

Needles to say I was very, very disappointed so it is important to me that people understand that EOT is not the end of waiting to be sure. Only at 12 weeks post can you say you are SVR and cured
Title: Re: Harvoni Side effects
Post by: Sweetie1 on January 19, 2015, 07:31:41 am
Hi Everyone,

    Day 68 of Harvoni out of 12 weeks! I don't really feel anymore side effects. The strange thing is I have always needed to sleep 8-12 hours and now I am going to sleep at midnight and waking up at 7 or 7:30 am. It's pretty amazing. Blood tests at week 4 showed virus undetectable. I am wondering if this new sleep pattern is a result of the virus going away. I hope it is gone and stays gone!
Title: Re: Harvoni Side effects
Post by: JoeK9999 on January 19, 2015, 08:15:12 am
One point to make that is that any VL test on Harvoni treatment is irrelevant as others have quoted their doctors as saying. The only reason they were done on the clinical trials was to evaluate Harvoni. We are not on trials. This is the real thing. When I spoke to Gilead, they simply said treatment lengths do not change and is not based on tests results while on treatment, and to get a 12 week post treatment test to find out my status. INT/RIB protocols were different and test based treatments.

You are either on the 8,12,or 24 treatment plan based
on your variables. The treatment plan is not going to change. You finish your treatment and wait for 12 weeks, 24 weeks and 48 weeks for VL test.
Same as you take your 7,10 or 14 days of antibiotics for an infection and either cured or not. If not you take a different antibiotic.

You can have a 4 week UND and a 6 week Detected and an 8 week UND again.
Is anyone having a weekly test? I don't think so. Based on the trials everyone is UND at EOT so why bother getting a test at the last day of Harvoni?  I prefer to quit worrying, get my 3,6,and 12 week tests after EOT showing UND. And if I turn out to become one of the slim minority that didn't make it, a new treatment is around the corner. I did my job by finishing my 12 weeks and now I live life again and take a test in 11 more weeks. Good luck to all!
 

 
Title: Re: Harvoni Side effects
Post by: dragonslayer on January 19, 2015, 09:26:00 am
>> I prefer to quit worrying, get my 3,6,and 12 week tests after EOT showing UND.<<

Joe, do you mean 3, 6, and 12 MONTH?  I scheduled an EOT test for this week as my last day of my 8 wk treatment is tomorrow.  I realize that in the trials, everyone was UND at EOT..  However, I believe that trial conditions and results can be somewhat different from real world results.. The sample is smaller, conditions more highly controlled, and in general, I dont see any harm in getting an EOT test if for no other reason  then to be able to ascertain, if, by some unfortunate set of circumstances, the 12 wk SVR test turns out to not be UND, youd know if it was an on treatment failure, rare as that would be, or a relapse.
Title: Re: Harvoni Side effects
Post by: JoeK9999 on January 19, 2015, 09:59:17 am
Yes I meant months. Everyone is entitled to get whatever tests they want.
To me EOT test means nothing. That's for me.

I read a story of someone who did S/O for 12 weeks,was still detected  at <15 at the 12 week mark, and by 12 and 24 weeks after EOT was undetected, so that implies that their immune system was able to clear the rest. Think about the anxiety they went through for months.

And other stories of people who on S/O were UND at 4, 8 and 12 weeks on treatment and then relapsed.
You are right, we haven't seen the real world results from Harvoni.
Like you, I  plan on being cured from Harvoni. All I can believe until I see some more stats are that relapses on Harvoni occur from either re-infecting yourself through another infected person's blood or a severe immune disorder that can't fight hard enough. We did our job and took the medicine as prescribed and can only wait now.
We will see true real world results in the coming year and hopefully we won't be paying attention to them because we became worry free.
I feel very confident about SVR based on the ION1 thru 3 trials that were done.
The best of luck to you with your virus free life!
Title: Re: Harvoni Side effects
Post by: hope4cure on January 19, 2015, 02:39:14 pm
Hello All,

Just found this website and want to share my experience so far.

Started Harvoni on 1/16.
Side effects: feeling very tired about 6 or 7 hours after taking the pill. I have had to take a nap each day (only 3 days so far) for about 1 to 2 hours. It is still early on so it could change.

No other side effects felt

I am under 40, geno type 1, liver stage 0 and my count is under 6 million so my Doc says I only need to take it for 8 weeks.

I probably have had hep c for all of my life (blood transfusion at birth.) Found out I had it about 1 1/2 years ago.

The notion of only the very sick getting this medication does not seem to apply.
Title: Re: Harvoni Side effects
Post by: HHburme on January 19, 2015, 03:02:16 pm
hope4cure welcome to the group. So glad to hear you are on your way to getting cured with harvoni. Day 38 for me, had some SE first 10 days and then really nothing to speak of. Lots of good info here....hang around.
JoeK...thanks for your comments. I think like you, that what really counts is SVR12.
Title: Re: Harvoni Side effects
Post by: Wilson on January 19, 2015, 05:15:51 pm
4 days on Harvoni. Feel normal.  Amazed  my insurance is paying for 12 weeks. My doc says I only need 8 weeks. She was amazed that my insurance paid as well. Liver biopsy was 1-2, no fibrosis.  Only found out in 2013. Never drank. Also found out I have hemachromitosis (iron overload genetic disorder). Had elevated liver function test for decades.  No one ever bothered to check out the elevated results. Once I started to have blood taken off, my Liver function and enzymes returned to near normal.  I will keep reading the great stuff people are posting.  I am taking my pill at 6:00 pm.  Heard I can sleep through possible side effects. Only 52 days to go then wait 12 weeks to ensure I'm clear.  My ferritin level is in access of doctor recommendation. Does anyone know if having a unit of blood taken off for my iron overload defect?
Title: Re: Harvoni Side effects
Post by: BattleTheBeast on January 19, 2015, 05:23:04 pm
Hi Wilson,

Welcome, glad you found all of us! Sounds like you are on your way with the Orange Magic Pill :)

I don't know anything about your condition but I am sure someone on here will be able to answer you question.

Take care and keep posting how you are doing!

Mel
Title: Re: Harvoni Side effects
Post by: Wilson on January 19, 2015, 05:34:04 pm
My viral load has never exceeded 2m. My doctor said your viral load does not mean anything. I am going to take a three day weekend for the next seven weeks to use my vacation time that I was saving for treatment. Now that I am on  harvoni I feel like this is great time to enjoy myself.
Title: Re: Harvoni Side effects
Post by: Katie on January 19, 2015, 05:52:31 pm
Hi Hope and Wilson!  Welcome aboard!

Hey Wilson, I had a doctor tell me that too, that the viral load in the blood wasn't concerning but what was happening in the liver, obviously.  I have read that a higher VL shown by the test is concerning both for treatment and for possible liver damage, which makes sense too as if it is high in your blood then it could be working over time in the liver.

I try not to think about that so much and just concentrate on how wonderful I feel.  I am on day 47 and on the 12 week treatment with 1a.  My 4 week test came back at 59 down from close to 3 million but 5 years ago it spiked to 16 million. It is working and I feel better than I have in years!  My liver is able to do it's job and detoxify my system and I feel 10 years younger.  I'll take that.

Good wishes to both of you and congratulations for getting on the Harvoni miracle cure!

Katie
Title: Re: Harvoni Side effects
Post by: Katie on January 19, 2015, 05:59:30 pm
Hi Katie

I showed as HCV not detected last year on Sovaldi Olysio at week 4, not "HCV RNA detected, less than 15 IU/mL". Same result at EOT, HCV not detected which was 12 weeks after I started so in June. But when we did the SVR 12 test in September I was found to have relapsed and my viral load was essentially the same as before treatment 6 months earlier.
My results from 9/3
HCV RNA RT-PCR, QT        2422260

HCV LOG 10    6.384

Needles to say I was very, very disappointed so it is important to me that people understand that EOT is not the end of waiting to be sure. Only at 12 weeks post can you say you are SVR and cured

Lynn,  I'm so sorry you had to go through that, but fortunately Harvoni is here for you now.  Did the doctor explain how it could be UD for that long and then come back?  That's why, in my mind, I am putting 6 months as my time to feel confident.  I know that is more than probably needed, but since I worked with bacterial viruses in college, I just don't trust those nasty sci fi parasites at all.

I'm rooting for you and everyone on this forum

Katie

Beautiful day here, 52 degrees and blue sky.  This is such a weird winter in SSE Alaska!  8)
Title: Re: Harvoni Side effects
Post by: Lynn K on January 20, 2015, 01:48:12 am
Katie

HCV not detected  does not mean they are all gone just lower than the ability of the test to detect the presence of the virus. For me the surprise was that the virus as back at 2 million plus just 12 weeks after stopping treatment. I did not think it would rebound that quickly.

Hi JoeK999
I am planning on asking my doctor to forget about the EOT test and instead test at 4 weeks post.. I agree with you the EOT test is pointless since everyone who clears the virus stays that way while on treatment.

I have read that if you make it to 4 weeks your chances are good at 12 weeks. Would rather have an early warning of relapse if it goes down that way or preferably an early sign of hope for SVR 12.
Title: Re: Harvoni Side effects
Post by: Katie on January 20, 2015, 02:03:06 am
Thanks Lynn, so then what I was trying to say before, but evidently not good enough was right there with you.  Guess I just am too literal and that sometimes is a problem for me.  So ya, I am staying with my 6 months before I relax.  HA!  I'll just remember UD may not be UD at VL = 0 until you give it time after treatment.

Virus replication is exponential and can go so fast it is scary.  The virus my lab work used could replicate millions of cells in a single host cell, I don't know about our monster virus, but all virus replication climbs very quickly and is one reason 1a & b were so difficult to treat...the rate of replication..

Good luck tomorrow, and I hope it is smooth sailing for you or at least easily tolerable.

Katie
Title: Re: Harvoni Side effects
Post by: Lynn K on January 20, 2015, 02:07:10 am
yeah obviously if they were truly gone they could not come back unless I have zombie hep c virus that came back from the grave

That is a joke by the way

Or aliens or zombie aliens either way we will kilz dem allz deder den dornailz!
Title: Re: Harvoni Side effects
Post by: Katie on January 20, 2015, 02:22:10 am
Lynn...you got that right.  :o   HA!

Sleep well!

Katie
Title: Re: Harvoni Side effects
Post by: kate0b1 on January 20, 2015, 05:58:53 am
@lynn, so funny having zombie virus's, I'm not counting any chickens before 12 weeks post. Relapse day was almost worse than the day i found out i had it. I will dutifully go and get my labs as ordered (i already have my scrips until june) but the only one i really care about it that one.

kate
Title: Re: Harvoni Side effects
Post by: Amj1951 on January 20, 2015, 07:00:54 am
Hello all, reading through the side effects is interesting. I had insomnia the first 3 days, Ive had a couple of minor headaches, I wondered if I was getting the bug from chills, but it all stopped and today I take my 14th pill and I continue to feel great. I feel I have so much energy its crazy!! I have had some forgetfulness but I THINK its getting better.. though I may have forgot if I forgot : )

My only complaint is sleep. I have a hard time going to sleep but once I do I sleep but I am waking up so early, but if this is the worst part of the pill for me, then I can gladly do this for 10 more weeks. I am on the 12 week treatment.

I DO believe there is a lot to be said for the water. The more water, the less side effects.

My questions.. as I read about others side effects. The ones who feel nauseas or fatigued. Are you on other medication or supplements too or do you only take the Harvoni? Do you have other problems other than the Hep C? I take one other pill, Losartan tctz to help control the protein in my kidney, but I feel nothing from it.

I just did a blood test and a 24 hour urine for my kidney doctor so it'll be interesting to see how the Harvoni is affecting me and working this early. I don't know if he'll do a VL test. I mentioned it but who knows. If not, then in two weeks my Liver Doctor will do it.

I am excited for all who have shown they are clear of the virus and for all of us who WILL clear it soon!
Meredith
Title: Re: Harvoni Side effects
Post by: hope4cure on January 20, 2015, 11:21:36 am
Amj1951 - I am not taking anything else, nor did I before starting Harvoni. Yesterday was my 1st day back to work while taking the medicine and 4th day on it and I did find myself getting tired around the same time, but I think being at work doing something helped me not get as tired, though I probably would have fallen a sleep if I was at home.

I may ask my doctor if I can change the time I take the medicine from morning to night. I am just worried I would forget to take it at night. I am finding myself feeling paranoid that I forgot to take it just 5 or so minutes after I took the dang pill. Today I just counted how many pills I have left and checked on my calendar to make sure it matches. That actually made me feel much better.

Good luck to everyone and never give up hope.
Title: Re: Harvoni Side effects
Post by: Bob V on January 20, 2015, 12:29:02 pm
Hi everyone,

I just got my 5 week lab results, VL under 15. This is great news but if I was totally honest I was hoping for UD. Still I'll take it.
-------------------------
Dx hep non AB 1972, Hep C 1991
GT 1A
VL 3.7m
Liver B 1992, unremarkable
Liver ultrasound 2014, normal
Treatment Interferon 90's x2 failed
Started Harvoni 12/08/2014

Title: Re: Harvoni Side effects
Post by: Bob V on January 20, 2015, 01:08:18 pm
Hope4cure
When I take my pill I write the dose # on a calendar or I would second guess myself too.
Title: Re: Harvoni Side effects
Post by: HHburme on January 20, 2015, 01:33:59 pm
BobV...I do the same thing. I also turn the presription bottle upside down so I know that I took the pill.
Today, I find a shipment of harvoni sitting on the front porch. Anyone could have come by and taken. This is the 3rd shipment and the first two required a signature. Wow !!
Title: Re: Harvoni Side effects
Post by: Lynn K on January 20, 2015, 01:41:27 pm
Amj951

Just was until today only taking Harvoni and Spironolactone a diuretic due to edema.

I do feel like I have been more tired but I work second shift so my hours are messed up anyway.

I just took my first Ribavirin this morning so we will see how that goes as far as sides.

Good luck on treatment
Title: Re: Harvoni Side effects
Post by: anniemybaby on January 20, 2015, 04:49:14 pm
I'm on my second day of harvoni my viral load is low so I'm on an 8 wk treatment I m nervous and scared I just feel so infected I even hate working im a cna in healthcare and I'm guessing that's where i got infected with hep c
Title: Re: Harvoni Side effects
Post by: Bob V on January 20, 2015, 05:29:54 pm
Lynn K,
Sending good vibes

Annie
I hear you. I'm nervous and scared too, it should get better with time. You'll get some good support on this forum. Good luck.
Title: Re: Harvoni Side effects
Post by: anniemybaby on January 20, 2015, 05:51:15 pm
Thank you and I'm taking it day by day it only took fighting with mg insurance company months before they agreed to it I've been reading people need to take ribavarin while taking harvoni why is that?
Title: Re: Harvoni Side effects
Post by: Katie on January 20, 2015, 07:49:15 pm
Lynn:  Thinking good thoughts for you.
Amj:  hope you have good news with your test results.

To Annie and Bob V
Welcome Annie. It is very scary at first but the more informed you become you'll learn you're going to be OK. I felt like I was a biohazard for years after I got my diagnoses but now that there is a cure I am very hopeful and looking forward to kicking this monster.  In a few years, Hep C will be a thing of the past, and we are on the breaking edge!  I find it exciting and am grateful this cure came about for me, and everyone in time to give us our lives back!  With a low virus load, you will respond quickly and you have support here. You aren't alone!

Bob, Congratulations on your great results!  My 4 week test came in at 59.  Remember the first 4 weeks killed millions and now you have another 4 or 8 weeks to go to get rid of just a few.  Even those without detection could very well have some under the test's ability to count them and none of us will know if we are clear of this virus until a good 12 weeks after we are finished.  The tests during treatments only tell us if it is working, and yours is definitely working and so is mine.  So please don't stress about it. 

Viruses are strange, unearthly parasites and since they have had this marvelous breakthrough we will kick it once and for all.  I feel very confident about this.  I am very fortunate as I am healthy other than joint issues, but have no other medical problem and have no negative side effects other than small, slightly annoying things that come and go.  Perhaps they aren't even related to the treatment!  All in all, I am feeling better than I have in years and so just keep drinking your water, eat as good as possible and rest!    I am finally able to sleep as I suffered with severe insomnia for many years.  Now, I am sleeping like a log and actually waking up rested.  That in itself is so wonderful, I don't have words to describe.  Yes, sleep is a beautiful thing.  Focus on the positive and try not to stress out over things, which sometime is easier said than done.   Know you are not alone and we are here for you.  :)

Katie

Title: Re: Harvoni Side effects
Post by: Haggis on January 20, 2015, 08:51:38 pm
Hey folks.  Quick update. My labs at 3 weeks came back undetectable, so yay for me. I still get a couple headaches per week, generally in the middle of the night or early morning, which is weird. (I wake up in the middle of the night with a headache and sometimes carry it through the morning.)  No biggie.

Pretty kick-ass, right?
Title: Re: Harvoni Side effects
Post by: badbradley on January 20, 2015, 08:55:24 pm
Right on Haggis!!
Title: Re: Harvoni Side effects
Post by: Bob V on January 20, 2015, 09:51:47 pm
Katie
Thanks for the post, I kinda needed that. Glad your better too.

Haggis
That's great news.
Title: Re: Harvoni Side effects
Post by: anniemybaby on January 21, 2015, 05:47:45 am
Katie thank you I find after I take my harvoni and go to bed I some I wake up feeling very strange like I slept for hours and it'll only be a half an hour I feel very very groggy n have a hard time functioning in the morning this is only day 3 for me
Title: Re: Harvoni Side effects
Post by: Katie on January 21, 2015, 06:17:50 am
Annie just give yourself some time and nap during the day if you can. I can't as I just am not a napper.  :-\  Quite a few on Harvoni are sleeping better so I am hoping that will kick in for you.  Do you think part of it is because you are so nervous about the treatment?  Our subconscious can do things.  When I think about it, others have had sleeping issues so maybe it just affects people differently too.  Hang in there.  The time flies by and you'll make it!

Katie
Be sure to drink at least 1/2 gallon of water a day to flush out toxins.  That is important.
Title: Re: Harvoni Side effects
Post by: JoeK9999 on January 21, 2015, 06:33:42 am
Bob V - Listen to Katie. I also was detected at 4 weeks. I was in the first group to start Harvoni and freaked out because I was hearing of all the undetected at week 4.
It turns out that that has nothing to do with SRV12 /SRV24 cure rates.
Also as time goes on I am seeing more and more that are not undetected right away.
Also I mention this all the time, but here I go again. Lucinda, one of the moderator's and a longtime Hep C columnist who was in the trials was undetected at 4 weeks, then was detected at 6 weeks and she is cured. When I called Gilead after my 4 week test, they told me treatment is Not based a on treatment results and to finish the recommended beginning treatment plan with a test at 3 months post treatment.
That's all we can do and the stats say most will be cured.  The overall trial results included failures of people that were lost to followup and some of the tables show how many they were. We have to base results on the people that were followed.
I am done with treatment and have 11 more weeks before I take my 12 week test.
And I will have anxiety until that time, but all any of us can do is pray for our SRV.
Title: Re: Harvoni Side effects
Post by: kate0b1 on January 21, 2015, 06:45:37 am
@joe, lol, i am still waiting for my 4 week labs and am already worrying about my june labs (12 week post). Im not so much worried about this lab (well mostly) but having relapsed last tx puts a different spin on it.

kate
Title: Re: Harvoni Side effects
Post by: JoeK9999 on January 21, 2015, 06:57:45 am
Kate,
I have put so many spins on mine from unknown Resistance-Associated Polymorphisms
that may be lurking in my body, if the food or water I am drinking or even anxity has reduced the potency. The longer we take this stuff, the more of a worry wart we turn into. Human nature. We all have the best odds ever to rid ourselves of this.
We all have to hang in there a little longer and keep the faith. That's all we can do.
Title: Re: Harvoni Side effects
Post by: mario555 on January 21, 2015, 08:52:01 am
Joek. Happy to hear you finished your treatment! The best, best, best wishes for SVR12! you see, me too I'm some kind of freak with polymorphisms, who must be affected by stuff I eat, wrong water I drink, things I do or shouldn't do. All of this will probably affect my cure, worsen my case, etc... As a worrywart I'm quite famous!
As someone here said "We've never won any kind of lottery so what makes us think we could be" the one freak of nature" who won't be cured!
I 'm so worried that I was borderline 12-24 week treatment and I was happy to help push for 24! We' ve had so many deceptions before that most of us can't really believe we'll be cured!. Then I read posts here and realize we'll probably all be cured in 2015.  I'm at week 10 out of 24 and I need to read you guys results after 4 or 12 week post treatment results. Keep writing and good luck!
Title: Re: Harvoni Side effects
Post by: Bob V on January 21, 2015, 10:57:09 am
Joe K
Thanks for that, I've been running this though my brain since yesterday.

Congrats on finishing tx and best of luck with SVR.
Title: Re: Harvoni Side effects
Post by: Lukey on January 21, 2015, 01:09:27 pm
Bob V and Haggis - Congrats on the good results but IMHO, I think you should make a new post and tell us all about it. There are some or many of us that do not go into this thread every time it gets replied to.

Why hide your good results in this thread?

Title: Re: Harvoni Side effects
Post by: Bob V on January 21, 2015, 04:07:16 pm
Bob V and Haggis - Congrats on the good results but IMHO, I think you should make a new post and tell us all about it. There are some or many of us that do not go into this thread every time it gets replied to.

Why hide your good results in this thread?
-----------
Lukey
Where should we post them?
Title: Re: Harvoni Side effects
Post by: concerned father on January 21, 2015, 04:56:44 pm
20 years ago my wife and I adopted a gorgeous baby girl.  Prior to the adoption, we were told that she had been infected with Hep C by her biological mother at birth.  This virus didn't change our minds about adopting her as we both fell in love with her the second we saw her.  Although I’m not a very spiritual person, I kept praying for a miracle treatment.   Harvoni is here and I think that I received the miracle I was asking for.  However, our daughter is reluctant to start the treatment for fear of the side effects.  Although they are minor compared to the potential outcome, she is still reluctant to start the treatment.   Do you have any advice?
Title: Re: Harvoni Side effects
Post by: Doluska on January 21, 2015, 05:09:12 pm
Show her Simptoms  of cirrhosis and outcomes of HepC. Not just your opinion, but published statistics and medical facts. It is better to be scared, than untreated.  Side effects are minimal! D
Title: Re: Harvoni Side effects
Post by: Lukey on January 21, 2015, 05:39:25 pm
I had Hep C for 32 years and had headache and constipation on Harvoni only for a few days but now those symptoms are gone. It's not bad at all and by now I may have kicked my HCV all the way to Jupiter.

Reassure her that there may be slight headache and flu like symptoms (that respond well to Tylenol) for a few days but the light at the end of the tunnel is not a train coming at her.

Please keep us updated on her progress and post it in new posts if possible so we won't miss it.

Joe
Title: Re: Harvoni Side effects
Post by: anniemybaby on January 21, 2015, 06:43:55 pm
I was wandering about something since my Dr only has me on the 8 wk harvoni at the end of my 8 wk mark if I'm still detectable will I have to start over or will she just keep me on it for 4 more weeks I guess I've been reading a lot of posts and I haven't seen anyone that had just an 8 wk course feeling nervous I hate this I want this out of my body NOW
Title: Re: Harvoni Side effects
Post by: Katie on January 21, 2015, 06:59:01 pm
Bob and Joe...It is human nature to over worry things.  I know every time someone says they are undetected at 4 weeks, a little doubt creeps into my mind since I was still detected with 59.  I just remind myself of the facts and how the virus works and how the treatment works and I feel immediately better.

Focus on the positive.  So many little things are improving with me.  Things the doctors or the trial runs don't address or maybe even know about.  Just think how poorly our liver has been working for the last decade or two or more.  It's primary function is to remove toxins and it hasn't been able to do that with the attacks of this virus. 

Our bodies have been slowly poisoned and ill health has been the result and some of it creeping up to where we felt it was normal due to aging or whatever.  My skin texture has improved, my tinnitus seems to almost be gone on occasion although it does still kick in. I am sleeping and DREAMING, my fatigue is gone, my brain is clear and working again, the arthritis in my wrists is hardly even noticeable where as a year ago I couldn't open anything, could not stand any twisting movement or flexing the wrist back.  (This is a HUGE deal)

I know if I mention some of these things to my doctor, he will not attribute it to the treatment, but whether is is being better hydrated, or sleeping better or the actual Harvoni, the treatment is the cause for all of it and I am grateful; so very grateful.

That's my spiel for today!  Ha!

Katie
Title: Re: Harvoni Side effects
Post by: Mugwump on January 22, 2015, 02:04:23 am
Show her Simptoms  of cirrhosis and outcomes of HepC. Not just your opinion, but published statistics and medical facts. It is better to be scared, than untreated.  Side effects are minimal! D
I see this from a different perspective and respectfully disagree as I believe the daughter might not just be scared but have a healthy skepticism towards ever being free from this disease.

Dear Father

Please consider telling her this;

My beautiful daughter Megan wept as I kissed her forehead and told her that there was a new treatment and it promised to at least give me a chance to live out the rest of my days free from HCV. It was one of those moments that only a parent and child can understand fully.

She was never stern with me when I refused going for another course of interferon and told her that I would not go on the transplant list or even consider putting another human at risk by accepting a partial transplant from a close match. I have had a full life so it is only fitting that the option of getting a transplant go only to those who have never had the chances at life that I have had.

I know my decision to not consider the transplant option when the disease finally put me down two years back upset her and my spouse greatly and I do understand fully why it did. It is extremely hard dealing with this disease.

Perhaps she is just waiting and knows that the past treatments were not that great. As one father to another it is best to help keep her mind open to the possibility that this treatment really is the cure we have all prayed for.  She is still young and most likely not suffering greatly from the disease as heavily as some who were infected later in life. Her immune system must be good and most likely has kept the disease from causing cirrhosis.

If she is just waiting to see if there are relapses then that is ok, as someone who has HCV I can fully understand her reluctance. 

Instead I would strongly encourage her to keep up on what happens in the next little while to those who have been treated with Harvoni and understand that if she waits too long and the disease progresses it can cause serious side effects other than just the premature death of healthy liver cells. Which is the same problem that happens to most individuals with chronic alcoholism.

Many people live long and happy lives having this disease but the disease does cause other afflictions as the years progress because it over stimulates the immune system  over a long period of time and these secondary afflictions are hard to stop.

I am sure she knows this already but if she does not then these facts must be kept in mind.

HCV is know to cause autoimmune diseases over time, these are the secondary problems I am aware of there may be others;

Non specific Graves Disease (which is the immune system attacking the thyroid gland)
Autoimmune Arthritis
Autoimmune Liver Disease (which is the worst) and cannot currently be treated.
Along with this the very real increased risk of liver cancers because of the nature of the way the virus weakens the liver cell reproduction system.
In men especially the increased iron in the blood puts us at increased risk of heart attack and other problems.

For all these reasons clearing the virus from your body is a good idea and Harvoni does exactly that, nothing more and nothing less.  The side effects are very minor and are well documented on this website and elsewhere and they are turning out to be absolutely minimal for the majority of healthy individuals with no liver damage yet. And the treatment is shorter in duration for those with essentially undamaged livers.

She has time on her side I am sure she will listen and respect what you tell her and know that you are a loving parent deeply concerned about her well being, as are for me are my daughter and spouse and others.

Best wishes from one Dad to another.

Eric   
Title: Re: Harvoni Side effects
Post by: Katie on January 22, 2015, 02:24:17 am
Well said Eric!

Being totally informed is what is needed, and if I was in her shoes, I would probably want to see results of this treatment, but since she has had it from birth, it's been with her already 20 years and I may not push it but I would make sure she understands.

To the father:  This is an excellent site which I have gone through.  Lots of good information and a good place for her, and you to start.

Katie

I forgot to "paste" the the site.  Sorry!

http://hepatitiscnewdrugresearch.com/hey-i-have-a-question-about-cirrhosis.html   
Title: Re: Harvoni Side effects
Post by: mario555 on January 22, 2015, 08:50:10 am
My grain of salt for the father of the young woman suffering from Hep C. Assuming she has no real damage yet from the virus, I would wait before treatment. Over the next 2-3 years new, shorter treatments will become available. Also, we will know a lot more about the long term side effects of Harvoni.
Most of us have no choice and no waiting time left so whatever long term side effects we get, we don't care as much. We have no choice!
For the young woman, her reproductive years are just beginning and she has 60 good years ahead of her. Why risk it if not absolutely necessary?
Having a choice, I'd wait a couple of years after the medication is out to flush out all the unknown risks.
Jensen, Merk, Achilion, Abbott and Gilead are all literally racing to come out with better, faster treatments. Also the prices will come down tenfold because of the increased competition.
My last word on this... If there is no compelling reason to initiate treatment, wait a few years!
Title: Re: Harvoni Side effects
Post by: mario555 on January 22, 2015, 08:52:49 am
Ho! I forgot... Make sure the daughter has her Hep A and B vaccine!
Title: Re: Harvoni Side effects
Post by: elizabethfaraone on January 22, 2015, 11:19:21 am
According to what Mario says, sounds to me like the poor are more than taken care of, and its the un-poor the government are scapegoating!

You misunderstand what I meant by "scapegoating." A scapegoat is a person or group made to bear the blame for others

You are clearly blaming the poor.  Therefore, you are scapegoating the poor.
Title: Re: Harvoni Side effects
Post by: elizabethfaraone on January 22, 2015, 11:31:26 am
Health care in Canada covers visits to doctors and hospitalization. It doesn't cover medication. We have an overly generous welfare system that will pay medication to welfare recipients and prisoners. If you're not on welfare, you must rely on your own money or private insurance. So, if you need a new liver, they'll do the transplant for free.
In my case, I had planned the medicine expense 2 years ago in case I would not be covered. I was lucky to have my insurer cover 100,000 out of a 160,000 bill. Gilead covered the rest. I have nothing but good things to say about Gilead.
No provinces offer any kind of financial aid. If you're employed and have no insurance or if you're insured with the wrong company, you're screwed.
The state of health care is dependent on governments that change every 4 years. I don't think they give a hoot as to what happens to me.
It is so hard to get financed for medication that we are but a handful of us to be treated with Harvoni. If you are poor, or a bandit, you'll get the medication for free. So, if you can't contribute financially to society, governments will keep you healthy! For the ones paying taxes.... Good luck!

I want to correct the misinformation being spread by Mario.  I have compassion for Mario, but I also know that he has been misinformed.  Here is proof that the working class and poor in Canada are being denied treatment with Harvoni:  http://globalnews.ca/video/1779835/vancouver-resident-needs-hepatitis-c-treatment
Title: Re: Harvoni Side effects
Post by: Lukey on January 22, 2015, 11:48:03 am
To each his own but I wouldn't wait. I've waited over 20 years for something better than Interferon, and Harvoni is now here and I'm on it for 8 weeks, and my SFX have been minimal. Harvoni has a 95%+ efficacy rate for type 1a.

IMHO, the sooner the better, and no time is better than now. She will someday thank you for it. Get it out of the way ASAP. With that success rate, why wait?

Joe
Title: Re: Harvoni Side effects
Post by: Bob V on January 22, 2015, 12:01:51 pm
Eric, Katie, Mario
Excellent posts. I was thinking of responding but you guys cover it well.

All add my own feelings on treatment. I was in the original Interferon tx back in the 90s x2. Due to the side effects and the feeing I was lied to by the drug co as to effectiveness I refused any of the new treatments until Harvoni. This includes my Dr wanting to put me on S&O in early fall, still didn't like what I was seeing. My new GI doc could not understand that I would/did not try the newer treatments over the years. I looked him straight in the eye and said "doc if you told me I would die in a couple of months if I did not take a drug that had ANY Interferon I would still not take it" I have brother and friends that feel the same way.

I guess I should add I wasn't feeling any effects in the 40+ years since my first diagnosis, other then treatment. I was willing to except all of what goes with this. I knew I might have liver failure, cancer, cirrhosis, etc.

I understand the posts on this is a great drug etc and for us that have been dealing with it and tried other treatments it is. But that doesn't mean everyone needs to get on Harvoni ASAP. The newer drug trials look promising. As for us on Harvoni we don't really know how effective it's going to be, yet and won't know long term side effects for years. I've been telling my friends it's time start looking at treatment but I feel they are looking at how things go with me first.

Just my .02

Title: Re: Harvoni Side effects
Post by: audreywald on January 22, 2015, 12:56:59 pm
Does anyone suffer from severe leg cramps before or during treatment with Harvoni? Mine are excruciating.
Title: Re: Harvoni Side effects
Post by: audreywald on January 22, 2015, 01:06:56 pm
20 years ago my wife and I adopted a gorgeous baby girl.  Prior to the adoption, we were told that she had been infected with Hep C by her biological mother at birth.  This virus didn't change our minds about adopting her as we both fell in love with her the second we saw her.  Although I’m not a very spiritual person, I kept praying for a miracle treatment.   Harvoni is here and I think that I received the miracle I was asking for.  However, our daughter is reluctant to start the treatment for fear of the side effects.  Although they are minor compared to the potential outcome, she is still reluctant to start the treatment.   Do you have any advice?

Tell her they are not so bad. Anyone who has been on the peg/ribavirin will tell her that while at times unpleasant, it's a piece of cake compared to the old stuff. Plus, this is her best shot at getting and staying WELL and beating down this dragon once and for all.
Title: Re: Harvoni Side effects
Post by: Lukey on January 22, 2015, 01:09:39 pm
Does anyone suffer from severe leg cramps before or during treatment with Harvoni? Mine are excruciating.

I don't know but it doesn't seem as though Harvoni could cause that. Leg cramps are almost always associated with low Magnesium with many people, myself included. I take 400-600 mg of Magnesium citrate and chloride on Harvoni  but I keep it 4 hours away from Harvoni. Perhaps you should also.

Joe
Title: Re: Harvoni Side effects
Post by: Subwayco on January 22, 2015, 01:11:10 pm
Hi Audrey,

I also have cramps that can get extremely painful.  I used to take Potassium and Magnesium. I heard somewhere that you shouldn't take Magnesium while on Harvoni so I stopped.  Believe me I totally know what you mean.

Take care,
Subwayco
Title: Re: Harvoni Side effects
Post by: Lukey on January 22, 2015, 01:25:05 pm
If you can show me a link that says where we should not take Magnesium on Harvoni, please do. When I called Gilead about it they did NOT tell me NOT to take Mg.

The bottle says not to take antacids within 4 hours of Harvoni, but the way I interpret it is, that doesn't mean you need to avoid all antacids during Harvoni Tx, it just means you need to keep it 4 hours from your Harvoni daily dose.
One antacid is Milk of Magnesia.

Rumors can be born, and people can avoid things that don't even need to be avoided.
Magnesium is a critical mineral that many people are WOEFULLY deficient in. I'd almost be willing to bet that some of you are experiencing Magnesium deficiency symptoms, but are so afraid of not getting an SVR that you're willing to pay attention to hearsay information at the expense of your own well being.
Title: Re: Harvoni Side effects
Post by: Amj1951 on January 22, 2015, 01:40:45 pm
I think I would call my doctor and talk to him/her about side effects before taking any supplements to be on the safe side.

Good luck,
Meredith
Title: Re: Harvoni Side effects
Post by: Picnic on January 22, 2015, 02:27:24 pm
Magnesium info:
MAGNESIUM1,2
• > 90% of magnesium test results typically fall into a clinically
acceptable “normal” range
• Poor correlation of serum magnesium levels with total body
magnesium stores
• Improved clinical outcomes rarely result from magnesium screening
• Symptoms of deficiency do not typically appear until < or = 1.0 mg/dL
• Levels > 9.0 mg/dL may be life-threatening
• Physiological appropriate range 1.0 – 3.9 mg/dL

1Ryan MF. Ann Clin Biochem 1991;28:19-26.
2Rosenbloom ST. J Am Med Inform Assoc. 2005;12(5):546-553
Title: Re: Harvoni Side effects
Post by: mario555 on January 22, 2015, 04:22:23 pm
To Elizabeth. I find you're overreacting a whole lot about my "opinion" about the poor! I was asked my opinion on the health care in Canada and I gave it. I am not spreading false statements, I gave it once! Spreading would require me to do it multiple times (I think). Also, these posts are called "side effects of Harvoni". I surely do not want to talk about social, economic or political subjects. I am more interested in knowing how you're doing on treatment. I don't think this is the right forum to discuss my views on the state of the welfare in Canada. I suggest we let this subject die here so we don't bother the rest of the group! So glad to hear you're doing well with the treatment. Good luck!
Title: Re: Harvoni Side effects
Post by: Subwayco on January 22, 2015, 04:26:45 pm
Mario,

Your a very wise man!

Subwayco
Title: Re: Harvoni Side effects
Post by: Lukey on January 22, 2015, 04:31:37 pm
Quote
Magnesium info:
MAGNESIUM1,2
• > 90% of magnesium test results typically fall into a clinically
acceptable “normal” range
• Poor correlation of serum magnesium levels with total body
magnesium stores
• Improved clinical outcomes rarely result from magnesium screening
• Symptoms of deficiency do not typically appear until < or = 1.0 mg/dL
• Levels > 9.0 mg/dL may be life-threatening
• Physiological appropriate range 1.0 – 3.9 mg/dL

1Ryan MF. Ann Clin Biochem 1991;28:19-26.
2Rosenbloom ST. J Am Med Inform Assoc. 2005;12(5):546-553

That sounds like Magnesium info from an allopathic website, but I've probably FORGOT more about Magnesium than they (or 95% of you) ever knew.
It all depends on who you choose to take your info from. I learned many years ago that allopaths have no clue about how many people are Mg deficient.

The USA RDA of Mg is not enough for most people, and most people don't even take oral Mg, or they take Calcium which negates it. I can show you the REAL authorities on Mg if you're willing to let go of your MD's hand for 5 minutes.

Joe
Title: Re: Harvoni Side effects
Post by: Lukey on January 22, 2015, 04:33:45 pm
Quote
Magnesium info:
MAGNESIUM1,2
• > 90% of magnesium test results typically fall into a clinically
acceptable “normal” range
• Poor correlation of serum magnesium levels with total body
magnesium stores
• Improved clinical outcomes rarely result from magnesium screening
• Symptoms of deficiency do not typically appear until < or = 1.0 mg/dL
• Levels > 9.0 mg/dL may be life-threatening
• Physiological appropriate range 1.0 – 3.9 mg/dL

Thank you but I don't think this is info I personally would want to take seriously.  I've dealt with some of the foremost authorities on Magnesium in the world. I know from 1st hand experience too. Mg deficiency is much more prevalent than allopaths realize or would like you to believe. Our foods have much less Mg than they once did, so if you don't take Mg, how is anyone supposed to get enough Mg? They don't, and cramps are a sign of EXTREME Mg deficiency.
Title: Re: Harvoni Side effects
Post by: Mike on January 22, 2015, 05:30:05 pm
To the concerned father:

I would tell my daughter that the current treatments are nothing like the old days - there's really a night and day difference.

The treatments, especially Harvoni, are well tolerated. The vast majority taking the Harvoni have very mild, if any side effects. This wasn't the case a mere  1-1/2 years ago when everything was Interferon+ Ribavirin-based.

Keep in mind that there's a perceived social stigma associated with Hep-C (drug user, low-life, unclean, dirty) none of which are true. It could be quite possible, that your daughter is  more concerned about the social stigma associated with an infection than the actual treatment. She might be worried that if she's on treatment,  her friends will find out and her whole social structure will come crashing down.

In the old days, Hep-C treatment was so bad and the side effects so intense, you couldn't hide the fact that you were on treatment for something- especially since the treatment took 48 weeks complete.

Now, the treatment is short, well tolerated, and you can complete it without anyone knowing the difference.

You might discuss this with your daughter.

You might also talk to your her about taking baby-steps (no pun) and ask if she would be willing to talk to a specialist about treatment. Maybe you could arrange the appointment for her and you and mom could come along for support. You could also help her develop a list of questions to ask.

Best wishes, Mike
Title: Re: Harvoni Side effects
Post by: concerned father on January 22, 2015, 05:50:48 pm
Hi everyone and thanks for your advice, please keep them coming.  Mike, my daughter is very upfront with her friends with respect to her situation, the last thing she wants is to infect someone else.    She is being followed by a specialist and we will get results of her latest blood test next month.  The last test indicated that her viral load was very low and that her liver had not yet been affected.  The doctor told her that if her new blood test is about the same, she will only need a treatment of 8 weeks.  I am hopeful that she will take advantage of this opportunity as her treatment will be fully covered by our insurance.  Mario, when we adopted our daughter, her doctor at the time made sure that she was immunized for Hep A and B.  I hope I will be able to convince her to take the treatment.  As previously mentioned, please keep your advice coming as I will be using some of your comments in my discussion with her.
Title: Re: Harvoni Side effects
Post by: Mike on January 22, 2015, 07:03:25 pm
Hi Concerned Father,

It sounds like your daughter has a supportive family, supportive friends, is educated about Hep-C, knows her current status as well as the current treatment options available. She probably understands that current treatments are short (8 weeks), well tolerated and very effective.

Given this information, I'm not sure there is much more you can say or do other than continue to be supportive.

Best wishes, Mike
Title: Re: Harvoni Side effects
Post by: Mugwump on January 22, 2015, 07:40:19 pm
Concerned Father
One minor side effect that seems to be the most common is mild head aches. The effect completely disappeared for me when I got in the habit of drinking more fluids with the pill instead of just sipping some water and eating regularly. However the head aches were so minor they were not even worth wasting an aspirin tablet on.

From what I have read here and elsewhere some people that are underweight seem to suffer more from the side effects than those who are either normal in weight or slightly over weight like myself.

However the individuals that keep busy and work and get good physical exercise and diet all seem to report almost no side effects whatsoever.

In conclusion, if your daughter does drink water as she works or exercises and eats a normal diet then the chances are there will be no noticeable side effects from taking Harvoni.

Because I was not in the habit of drinking water because other disabilities have kept me from being as physically active as I should be, Harvoni caused me to go dry mouthed and anxious and the fear of it not working like the last treatment caused me to doubt which fed off the side effect of being underhydrated.

As soon as I started hydrating myself to the needs of my system the problems and side effects completely disappeared. At 7 weeks of treatment I feel better than I have in 30 years, I now actually have normal saliva levels which I have not experience since I was in my 30s (I am now 62) which in turn is good for my dental health. My strength in my back muscles is returning to a good level so I can exercise and work again. So for those who have had serious liver damage this medication is a God send.

A person who has never gone through the advancement of the virus to full blown active HCV with a high viral load and the terrible debilitating effects of long term impaired liver function and secondary immune response afflictions cannot know how painful and difficult life with HCV becomes over time.

Harvoni taken as directed seems to buck the trend because it is targeted at stopping the replication of HCV in the body, therefore because your daughter is still fighting the disease with a young immune system treatment should be a breeze. With a healthy liver she will clear the virus in no time and stands an even better chance of not having the disease return than individuals who have aged and less active immune system that have allowed the disease to progress to cirrhosis.

The whole reason for interferon was to cause the body to create and excess of immune cells to kill the virus. Which was rather the same as swallowing the spider to catch the fly in some regards.  Seeing that her system is doing the job correctly she should be able to clear the virus completely just by having the virus replication stopped by Harvoni.

It might be a good idea to look into the reports and stats of people who were treated successfully and cured with interferon an ribiviron to see how many of them relapsed. I suspect that Harvoni's final regarding relapse rates will turn out even better for those who take it that in the short course and do not have serious liver damage.

My best wishes to you both on working through this disease as a father and daughter.

Eric
Title: Re: Harvoni Side effects
Post by: anniemybaby on January 22, 2015, 08:14:13 pm
Can I take milk thistle while on harvoni
Title: Re: Harvoni Side effects
Post by: anniemybaby on January 22, 2015, 08:17:58 pm
I've been reading about special diets to promote liver health I've never really been a health food kinda person but if it'll help my liver I'll try anything my mouth started getting very sore and I'll b on harvoni a week now
Title: Re: Harvoni Side effects
Post by: Katie on January 22, 2015, 08:29:14 pm
I've been taking Milk Thistle for years but stopped during this treatment.  I decided to give up all supplements other than my B's, D3 and C and I have been feeling so good I forget them lately.  That is just my opinion, based on no guidelines.

Be sure you are drinking lots of water (minimum of 1/2 gallon per day).  Others have stated it helped them with mouth issues.  This amount of water is over and above juice, coffee or tea and don't drink soda during this treatment. Especially a cola product as it isn't good for a healthy liver.  7-up may not hurt.  ???

You may want to gargle with warm salt water as that promotes healing with the membranes.

Sorry you are having issues Annie.  Give it some time and I am sure it will get better for you.

Katie
Title: Re: Harvoni Side effects
Post by: Lukey on January 22, 2015, 08:31:56 pm
Can I take milk thistle while on harvoni

I've never been told not to but I don't take MT right now. I plan to go back on it after Tx.
I'm not an expert but I'd pass on most herbs during Tx.

Eat whatever you'd call a healthy diet. I'd make sure to get plenty of protein but not too much, plenty of fiber to ensure good digestion and elimination, and healthy fats. I'd avoid junk food, sweets and sugar and try to eat functional foods like proteins, vegetables, fruit and other plant foods.

Joe
Title: Re: Harvoni Side effects
Post by: Katie on January 22, 2015, 08:39:20 pm
Good advice Lukey.  Fat and sugar are hard on the liver and I love them both!  I have really had a sweet tooth lately which is something new to me and I have a battle with it at night.
Title: Re: Harvoni Side effects
Post by: elizabeth on January 22, 2015, 09:02:12 pm
i will  be starting treatment soon what will be the best time morning or night  to take Harvoni. my work is very strenuous at times and this has me really worried.but i am very very excited about going on my treatment just found out today i am 1A and my viral load is 2 million liver biopsy on Feb 2nd. tried all the old treatment back in 1996 could not handle them and the sure rate at the time was like 20% to cure 80% not to cure so just was not worth it.i am a sctive 52 year old  but always so dingy and tired but i just keep puching threw i look so forward to not being tired and having such bad stomach issues. i have also read it raises the blood pressure and i have to take meds for that already . any info would be nice  and Thank you
   
Title: Re: Harvoni Side effects
Post by: Lukey on January 22, 2015, 09:15:27 pm
Hi Katie,

I don't think you could get me to believe in 100 years that fats are bad for the liver.That's a myth that may have originated on Hep C websites. When I first saw that on a Hep C website many years ago, I dismissed it as mis-information.

I never believed in the "fat is bad for the liver" theory. I eats LOTS of fats, I have for many years.
Would you believe 5 or 6 GALLONS of coconut oil every year?

Coconut oil is for sure not hard on the liver. It has many anti viral properties and is like food for the thyroid. It also helps balance blood lipids.

Healthy fats are GOOD for the liver, not bad.
I use real butter, NEVER margarine. EVOO, avocados, whole free range non GMO eggs, whole fat cultured organic dairy, nuts, seeds, full fat cheese, poultry with the skin. I don't use low fat anything. Anything lowfat is crap in my book, and is a frationated food.

People that eat lowfat diets are flirting with disaster in my book.
Cholesterol is good for you and actually protects you from major diseases.

I probably ate more fats today than you've eaten in the last month, and I doubt I'd  change that.

Joe
Title: Re: Harvoni Side effects
Post by: Lukey on January 22, 2015, 09:18:20 pm
I haven't eaten sugar in decades.
If I felt like I wanted sweets I'd eat dried fruits or even whole fruit like bananas, organic apples, etc. I used to freeze over ripe organic bananas and make an ice cream type thing with them. I'd blend them in a food processor with coconut milk and put cinnamon on it.

Joe
Title: Re: Harvoni Side effects
Post by: Lukey on January 22, 2015, 09:21:24 pm
i will  be starting treatment soon what will be the best time morning or night  to take Harvoni. my work is very strenuous at times and this has me really worried.but i am very very excited about going on my treatment just found out today i am 1A and my viral load is 2 million liver biopsy on Feb 2nd. tried all the old treatment back in 1996 could not handle them and the sure rate at the time was like 20% to cure 80% not to cure so just was not worth it.i am a sctive 52 year old  but always so dingy and tired but i just keep puching threw i look so forward to not being tired and having such bad stomach issues. i have also read it raises the blood pressure and i have to take meds for that already . any info would be nice  and Thank you
 

Take the Harvoni any time of the day, just take it at the same time every day.
I take mine noon to 1 PM, so you get an even level of the med in your blood 24/7.
Let us know how it goes for you.

Joe
Title: Re: Harvoni Side effects
Post by: HHburme on January 22, 2015, 09:22:06 pm
S
Title: Re: Harvoni Side effects
Post by: anniemybaby on January 22, 2015, 09:27:14 pm
Katie thanks for all the advice it really helps me sleep st night knowing there's someone just like me out there I took you advice today n pushed for drinking lots if water ugh I'm not a real big water drinker unless its summer u didn't know sodas were bad for liver I don't really drink a lot a Pepsi once in awhile ice tea is my weakness I'm trying to live a healthier life which is better said than done as for my mouth issues I had to call Dr its really hurting me n it burns when I eat or drink anything
Title: Re: Harvoni Side effects
Post by: Katie on January 22, 2015, 09:52:12 pm
Elizabeth:
Hi Elizabeth and welcome to this forum. It is filled with information and you'll see that all of us are really doing well on this treatment. Some better than others and it seems to depend on what shape your liver in in, but not always.

I personally take my pill a couple hours before bed and it has worked well for me but others have good results with taking it in the mornings or during the day.

You sound right where I was before treatment and maybe better but then I am older than you.

I had horrible fatigue (where your joints feel mushy)
horrible insomnia and wasn't dreaming so feel I wasn't getting into REM
When I did sleep I woke up exhausted
horrible brain fog which was bad for my job. It was as if my brain and my mouth got separated sometimes.  I kept my writing skills but my verbal skills decreased by at least half and I was always very articulate.  Was difficult finding the right words sometimes. It forced me to retire almost 2 years ago and it was the right thing for me to do.

I developed a hiatal hernia (esophagus) and had bad acid reflux ( probably due to a long bad sinus infection where I would cough until I sometimes threw up. 

All of these symptoms of Hep C, which I suffered with for years started to diminish with my first pill and I am almost going to starting my 3rd bottle on my 8th week now and am feeling better than I can really remember.  I feel 10 years younger and now truly realize how this nasty other worldly nasty virus damaged me.  The toxins building in your body because the liver isn't functioning properly is like slowly getting poisoned and it sneaks up on you to the point you think it is normal.  Even the hernia seems better, for whatever reasons and I have had other small improvements probably from good rest and staying well hydrated but even those are related from this treatment.

I will emphasize that.Dink LOTS of water to flush out the toxins!

I am excited for you because you are going start feeling so much better.  I found the side effects they mentioned for taking Harvoni, were actually what I was already experiencing before treatment.  This isn't the case for everyone.

I refused the old treatment for the same reasons you did not follow through and am glad I waited.  I am even happier and grateful that this breakthrough came in time for it to help all of us.

Good luck and know you are not alone!

Lukey:

I should have been more specific and stated BAD fats should be avoided and I use coconut oil, olive oil and real butter as well.  I did mention that your advice was good, however and of course we definitely need healthy fat for many metabolic functions.

Katie
Title: Re: Harvoni Side effects
Post by: Lukey on January 22, 2015, 10:02:21 pm

Glad to hear we agree on that. If we had't, I wouldn't have pushed the issue. I'm not here to try to change anyone, I just speak of what I do and at times I probably say more than I should. I realize it's not a holistic website.

I think I'd rather go to jail than eat a meal without fats. :)
I may eat more fats than I should at times, like a pint of heavy whipping cream in 2 days a week or so ago.  It sure was yummy, and fats don't make me gain weight.

Joe
Title: Re: Harvoni Side effects
Post by: Katie on January 22, 2015, 10:08:39 pm
Lukey...you are funny and you know jail would only feed you bad fats!  Ha.  You are also lucky you don't gain weight.  I LOVE ice cream and have to limit it so have a bowl for me.   :'(
Title: Re: Harvoni Side effects
Post by: dragonslayer on January 22, 2015, 10:12:58 pm
Lukey, how are your cholesterol levels enjoying all those saturated fats?    ;)
Title: Re: Harvoni Side effects
Post by: Lukey on January 22, 2015, 10:24:06 pm
About 250 the last I knew, and I think that's good. I'd never take a statin drug.

Eating cholesterol does not raise blood cholesterol levels. Coconut oil balances blood lipids.
I hope to keep my cholesterol level in the 250 range.
I don't even want to hear what my MD has to say about my cholesterol as long as it's in the 200-300 range.

Joe
Title: Re: Harvoni Side effects
Post by: Lukey on January 22, 2015, 10:25:38 pm
I think fats are great. I don't gorge on them but I eat fats with every meal. :)

Taking IP6 can get rid of fatty liver but I'm not taking IP6 on Tx.

Joe
Title: Re: Harvoni Side effects
Post by: Lukey on January 22, 2015, 10:28:22 pm
I haven't had ice cream in decades b/c it has sugar in it. I made my own with frozen bananas and coconut milk, which was not only delicious, it was healthy.

I've quit eating fruit and have lowered my carb intake a lot. I was eating too much fruit, and it can be like sugar in ways and actually cause cravings. I have less cravings on low carb diet.

Joe
Title: Re: Harvoni Side effects
Post by: Mugwump on January 22, 2015, 10:52:34 pm
i will  be starting treatment soon what will be the best time morning or night  to take Harvoni. my work is very strenuous at times and this has me really worried.but i am very very excited about going on my treatment just found out today i am 1A and my viral load is 2 million liver biopsy on Feb 2nd. tried all the old treatment back in 1996 could not handle them and the sure rate at the time was like 20% to cure 80% not to cure so just was not worth it.i am a sctive 52 year old  but always so dingy and tired but i just keep puching threw i look so forward to not being tired and having such bad stomach issues. i have also read it raises the blood pressure and i have to take meds for that already . any info would be nice  and Thank you
 
Make sure that you take the pill at the most convenient time for your routine, personally I log it so as to make certain there is no double of missed doses. It does not really matter when just make sure you keep your dietary need up. It is a good idea to drink a fairly good sized glass of water when you take the pill as this will help with ingestion and ease any problems with digestion.

What you will experience is a significant increase in bilirubin excreted by your liver as the dead virus particles and liver cells that have been killed by HCV start to be removed from your system naturally. For me this caused some limited biliousness and bloat gas which translated into a major case of wind and belching.

But remember in some cultures it is considered good manners and a compliment to the cook to belch or even break wind! Unfortunately this is not the case in our backward uptight society hold on you will begin to experience what is like to have a normal digestion system. AND I LOVE IT I can actually lay claim to being a genuine OLD FART and not just brag!

Get good rest and let the medication do its job, stay hydrated and active and you will be surprised how easy this treatment really is! The "foggy brain" headaches and biliousness will ease as your treatment progresses.

 My mind is sharper, my guitar playing is almost on a performance level, my muscles, arthritis and all the other problems effected by having impaired liver functions are working better than they have in 30 years. It is amazing and until you experience the changes it will be hard to believe but IT IS REAL for those who have only minor damage from HCV but are effected in ways they do not realize because they are used to feeling sick all the time!

GO FOR AND BEAT THE BEAST WE ARE ALL CHEERING FOR YOU AND WISHING YOU GOOD HEALTH!!!!!
ERIC
Title: Re: Harvoni Side effects
Post by: Lynn K on January 23, 2015, 02:42:00 am
To all those considering various supplements while taking treatment I would proceed with caution and discuss your ideas with your doctor or pharmacist.

Personally I don't want to do anything to risk the success of my treatment and have stopped taking everything, no vitamins no prilosec (specifically on the list to avoid). They can't test for interactions with everything known to human kind to try taking and this is a very short time we are talking about here.

Please ask you doctor before adding a mineral or herbal supplement while on treatment.

Audry

I have cirrhosis and have had like you said excruciating leg and foot sometimes body cramps for the last several years. One thing I think for me could be contributing is the diuretic I am taking. I have noticed I seem to be having almost no cramps now 9 weeks on treatment. I have also heard being dehydrated can cause leg cramps so make sure you are drinking the recommended daily fluid intake eight 8-ounce glasses of fluid a day, because all fluids count toward the daily total.

http://www.mayoclinic.org/healthy-living/nutrition-and-healthy-eating/in-depth/water/art-20044256
Title: Re: Harvoni Side effects
Post by: Amj1951 on January 23, 2015, 06:54:58 am
Hi all, I fully agree with Lynn. Only you with your doctor should decide if you need anything extra while on the Harvoni or at any other time.

Legs ramps can also be caused by low potassium as well as low magnesium and lack of water. I know everyone has different opinions about supplements, but I find if you eat the proper foods, you should not need them. I know that is a debate in itself, but eating nuts, fruits, veggies will give you what you need each day.

One thing I’ve learned over the years living with one kidney is what is good for my kidney may not be good for my liver and vise versa. High protein diets.. especially a lot of meat.. specifically red meat is not good for my kidney. A high fat diet is not good if you have belly fat which is a contributor to a fatty liver… though they say a low carb diet is good for the liver but at the same time that is not good for my kidney.

I think having labs done at least once a year, if not twice is a great thing then you know for certain what your body is lacking OR has too much of.

I’ve asked about Milk Thistle but been told it’s not good on the kidney.. at least on my kidney. I do know it has benefits though. Don’t laugh, but my basset hound had a problem with her liver that went on for a few months and her numbers were so high. The vet put her on two milk thistle a day and after about 6 months……. She was back to normal. For me that proves Milk thistle has benefits, but as Lynn said only your doctor can help with this decision.

I think while on Harvoni, we should not take anything that a doctor does not tell us to take because they don’t know yet everything that Harvoni interacts with and I personally would not want to take anything that might affect how it works because I want it to have a 100% chance in my body!

Anyway, that’s my two cents : )
Meredith
Title: Re: Harvoni Side effects
Post by: elizabeth on January 23, 2015, 10:28:44 am
Katie thank you so much for responding to my post. As i read these comments i become very excited about the treatment. I am just tired if being sick and tired lol. I know we all relate on that subject. I will continue to check back with this forum because i find it so Helpful  :) now to wait and see what biopsy says and if insurance will pay!
Title: Re: Harvoni Side effects
Post by: mario555 on January 23, 2015, 11:17:27 am
Hi Elizabeth,
If you can, try to get a "Fibroscan" rather than a biopsy. It's painless and takes 5 minutes...
Title: Re: Harvoni Side effects
Post by: Lukey on January 23, 2015, 11:47:00 am
Elizabeth :

Do you prefer only females to reply to your posts? I see that you thanked Katie but did not even acknowledge Eric and I for replying to your questions.

Joe
Title: Re: Harvoni Side effects
Post by: Lukey on January 23, 2015, 11:59:30 am
I have a belly that's a tad bigger than it should be but I'd bet $5 that's not because of me eating a high fat diet, it's because I eat more food than I need to feed my body. I also hoped lowering carbs in my diet would reduce my belly size but it did not.

I'm not going to deprive myself of healthy dietary fats for weeks on the slim hope of it reducing my belly size. I learned through trial & error many years ago that I can eat fats "until the cows come home" and not put on any weight from it. Many people can eat fats w/o gaining weight and I'd even go as far as to say that most people are this way. Coconut oil feeds the thyroid and helps people lose weight.

I don't often eat chicken skin, but I eat some once in a while in soups.
I feed most chicken skin to my cats who will gladly eat it.

Joe
Title: Re: Harvoni Side effects
Post by: Lynn K on January 23, 2015, 12:19:07 pm
I eat fast food Big Macs and egg mc muffins and TV dinners but yet my cholesterol is 120 go figure
Title: Re: Harvoni Side effects
Post by: Lukey on January 23, 2015, 12:20:13 pm
Amj1951 :

Now that my Harvoni SFX have all but gone away, I could cut back or even stop magnesium now but I'm going to wait until my 1st blood work results are back and go from there. If it looks like I'm going to clear HCV in 8 weeks, I'll keep taking the Mg, and if not, I might quit the Mg and cross my fingers.
I feel like I'm responding very well to Harvoni, but as I said earlier, we won't know for sure until we see the blood work. :)

My head feels a whole lot clearer now!!! I'll drink (filtered water) to that. Where'd that brain fog go that I had the other day?
Oh, I see. My liver may now be de-congested and functioning a lot better.

If I can clear HCV like many do on Harvoni, I'm going to be some kind of grateful to Gilead and modern pharma. So far, Harvoni seems like a wonderful med. I had been against all meds for decades, but Harvoni seems to do just what it was made to do and do it well and do it quickly (when you consider a virus that some people have had for 30+ years) and not make the patient sick in the process. I guess it's no surprise they've made meds like this. It's what they're worked on for years and is now a reality.

Joe
Title: Re: Harvoni Side effects
Post by: Lukey on January 23, 2015, 12:28:27 pm
Leg cramps can sometimes be relieved by taking K [potassium] but I'm kind of sure that Mg (magnesium) controls K, so if you take Mg vs K you're more apt to get control of the imbalance vs just relieving the cramps if you take K.

Joe
Title: Re: Harvoni Side effects
Post by: elizabeth on January 23, 2015, 06:07:00 pm
Elizabeth :

Do you prefer only females to reply to your posts? I see that you thanked Katie but did not thank or even acknowledge Eric and I for replying to your questions.

Joe
I am so sorry i am just learning this page just signed in yesterday trying to figure out how to follow a post i make , thought my email would notify me on all responce I am very sorry Joe and Eric i am still looking for them  from you to now .
Title: Re: Harvoni Side effects
Post by: Lukey on January 23, 2015, 06:13:40 pm
No problem. I had no idea about that.
I'm such an internet veteran that I know most forums like my back yard. :)
Title: Re: Harvoni Side effects
Post by: elizabeth on January 23, 2015, 06:21:36 pm
thank you for the advice i am ready to slay this blood dragon and send it back to hell for sure. i am so happy i have found you all and please be patient while i learn to navigate this site my hopes are very high i will ask about the fibroscan indeed . i was also trying to figure how to do a profile picture etc and i need to ask what the intials SFX and so on mean. I have already realized from reading the post that most of my issues are from this HCV   and that makes me feel better knowing it may all be over soon :)
Title: Re: Harvoni Side effects
Post by: Amj1951 on January 23, 2015, 06:34:43 pm
Welcome to the forum Elizabeth. Each time you come on it will get easier and you don't ever need to worry about thanking people each time they speak to you. I have found its very easy to fit in here and there is some great information to be found. It definitely makes the treatment a lot easer : )

Good luck with your treatment!
Meredith
Title: Re: Harvoni Side effects
Post by: Katie on January 23, 2015, 06:41:18 pm
Hey Elizabeth..the acronyms confused me at first too.  Someone was mentioning the EOT tests and I was Googling all over trying to find them.  EOT was End Of Treatment.  HA!  SF = Side Effects,  TX = treatment  VL = Viral Load,  S/O = Sovaldi and Olysio (treatment came out 2013).

Another one you see often is SVR or SRV and not sure what it stands for except that it means you have cleared virus.  There is sometimes 8 or 12 signifying weeks of treatment.

NOTE to participants on forum: Please correct me if I am wrong as I am certainly not the expert and it took me awhile to figure them out and please add to it as I know this isn't everything.

Katie

No thanks needed as Meredith stated.  We all benefit from everything posted and it is a support group not meant to belittle in any way.
Title: Re: Harvoni Side effects
Post by: Lukey on January 23, 2015, 06:58:15 pm
SVR = sustained virological response (lasting benefit of Tx, not sure if it means cured though).

SRV = Stevie Ray Vaughn

SFX = side effects
Title: Re: Harvoni Side effects
Post by: Katie on January 23, 2015, 07:00:23 pm
Thank you Lukey.  That has been driving me crazy!  Stevie Ray Hahahaha I think someone transposed, huh!
Title: Re: Harvoni Side effects
Post by: Lynn K on January 23, 2015, 07:00:39 pm
Here is a list of abbreviations and acronyms some are a bit dated this list was compiled in the Interferon days

Hepatitis C Acronyms/Abbreviations
Hepatitis C Acronyms and some Definitions:
 
 
HCV - Hep C : Hepatitis C virus
Boceprevir: Victrelis
Teleprevir: Incevik
Inf: Interferon

GS-7977 Experimental drug by Gilead Sciences Inc. Phase 3 trials underway in conjunction with Rbv. Now is called Sofosbuvir or Sovaldi

Riba/Rbv: Ribavirin
Bx: Biopsy : Invasive liver sample removed and analized to determine liver condition
Fibroscan: Non invasive Ultrasound Technique for determining liver condition
Fibrosure/Fibrotest: Combination of blood test scores used for determining liver condition
Dx: Diagnosis
GT: Genotype
IR: Insulin Resistant
IL28B: A gene polymorphism which helps in Tx prediction -  CC , CT , TT
Sx: Side effects
Tx : Treatment
 
SOT: Start of Treatment
EOT: End of Treatment
RVR: Rapid viral response - Undetected virus at 4 wks. Tx
cEVR: Complete Early Viral Response: PCR Und at Week 12 (P/R Tx)
EVR: Early Virological Response:  >2 Log Drop at Wk. 12
eRVR - Extended Rapid Viral Response - Und virus @ Wk.4 - Wk. 12
Und : Undetected virus
SVR: Sustained Viral Response: Und after 6 months EOT
P/R Tx: Pegelated Interferon / Ribaviron Treatment (old term - SOC: standard of care)
VL: Viral Load - amount of virons per IU (International Unit)
IU: International Unit (1 IU = 2.5 VL Copies apx )
HVL: High Viral Load (≥800,000 IU)
LVL: Low viral load (<800,000 IU)

PCR: Polymerase Chain Reaction
RT-PCR quantitative: using Reverse Transcription-Polymerase Chain Reaction- to count how many virus are in blood

RT-PCR qualitative: a "positive" or "negative" using Reverse
Transcription-Polymerase Chain Reaction to see if there are at least 50 IU/mlviruses detected in bloodRNA: RiboNucleic Acid
Rx: Prescription
TMA: Transcription Mediated Amplification
All oral Tx: Interferon-free treatment (Phase 2 Clinical Trials)
 
More Acronyms:
 
AFP: Alpha-FetoProtein
ALP: Alkaline Phosphatase (Alk Phos)
ALT/SGPT: Alanine Aminotransferase - liver function blood test
AST/SGOT: Aspartate Aminotransferase - liver function blood test
CBC: Complete Blood Count
DAA: Direct Acting Anti-viral
ELISA: Enzyme-Linked ImmunoSorbent Assay
EPO: Erythropoietin Epoetin alfa (Epogen/Procrit), Darbepoetin alfa (Aranesp)
ESA:: Erythropoiesis Stimulating Agent
ESLD: End-Stage Liver Disease
GGT:: Gamma Glutamyl Transpeptidase
HCC: HepatoCellular Carcinoma (Liver Cancer)
HDL: High Density Lipoproteins (Good Cholesterol)
HGB: Hemoglobin
IFN: Interferon (Alpha 2a/2b)
IU: International Unit 1 IU (2.5 VL Copies apx)
LDL: Low Density Lipoproteins (Bad Cholesterol)
LFT: Liver Function Test
LLN: Lower Limit of Normal
NAFLD: Non Alcoholic Fatty Liver Disease (Steatosis)
NASH: Non Alcoholic SteatoHepatitis
Neup: Neupogen
PEG: PolyEthylene Glycol
PegIFN: Pegylated Interferon Alpha (2a/2b)
PI : Protease Inhibitor
RBC: Red Blood Cell Count
RIBA: Recombinant ImmunoBlot Assay
TMA: Transcription Mediated Amplification
TSH: Thyroid stimulating hormone or Thyrotropin
ULN: Upper Limit of Normal
VLDL: Very Low Density Lipoproteins
WBC: White Blood Cell Count
Title: Re: Harvoni Side effects
Post by: Katie on January 23, 2015, 07:07:50 pm
Perfect Lynn.  I just knew you'd come through and I am going to copy this into a document for reference.  Acronyms are great but to the newbies they can also be intimidating.

Thanks again and how are you doing on your changed treatment?  Hope all is well.

Katie
Title: Re: Harvoni Side effects
Post by: anniemybaby on January 23, 2015, 07:14:33 pm
Today is day five of harvoni I feel like a new person I can't explain it I just feel better Dr prescribed me n oral rinse for my mouth issues but overall I feel great
Title: Re: Harvoni Side effects
Post by: anniemybaby on January 23, 2015, 07:18:40 pm
Lynn thanks for all the abbreviations I was lost didn't understand most if them
Title: Re: Harvoni Side effects
Post by: Katie on January 23, 2015, 07:43:31 pm
Great news Annie!  Did the doctor say what caused the mouth sensitivity or burning?  Just curious.

Lynn is a wealth of information and that list is great.  Very helpful!

Enjoy the new you.  I hope your improved health continues and just think....you are only on day 5.  How encouraging is that?  We are on a really powerful and wonderful treatment and finally we can feel we will win this battle.

Katie
Title: Re: Harvoni Side effects
Post by: sunrise on January 23, 2015, 07:47:04 pm
Katie you're so sweet.
SVR=Sustained Virilogical Response. Means that you have responded to DAAs= direct acting antivirals. Thus not showing detection of virus in blood...
Title: Re: Harvoni Side effects
Post by: Katie on January 23, 2015, 08:01:37 pm
How are you doing Sunrise?  Sending positive thoughts for your current bloodwork.

Sweet?  Ha  That isn't the normal adjective used for me but I'll take it.

I am so jazzed as I got a knee brace today for my bad leg and so far it is working great.  It is a high tech one, very light weight and strong and the joint moves so smoothly.  Think I may have to invest in some long denim skirts.  It works under my jeans but a little snug. I had a bulky neoprene brace; made me sweat and then my ankle would swell and it never stayed in place so I was always tugging on it.  Needless to say, it went in a closet.  So I have a bionic knee, am walking almost normal and I love it so far.  with my brace and Harvoni I am really looking forward to a great spring and summer full of gardening and maybe even fishing!  Life is good!

Katie
Title: Re: Harvoni Side effects
Post by: anniemybaby on January 23, 2015, 08:23:15 pm
Thanks Katie and no he didn't say wat was causing the mouth pain but I didn't go to my GI Dr went to my MD I will b calling my GI Dr Monday just so I keep everyone on the same track
Title: Re: Harvoni Side effects
Post by: BattleTheBeast on January 23, 2015, 08:30:41 pm
Rinsing your mouth with food grade organic coconut oil for 10-20 minutes doesn't amazing things for you. Gets rid of bacteria hiding in your mouth, whitens your teeth, freshens your breath, helps heal the gums (my gums are more sensitive on treatment).  They call it oil pulling but it's just swishing :)

Kind of weird at first until the coconut oil melts, you can start with a teaspoon. It really does help, they have apparently been doing it forever in India :)

Glad you are feeling so well!

Mel
Title: Re: Harvoni Side effects
Post by: sunrise on January 23, 2015, 08:32:49 pm
Thanks for asking Katie
            Good that you have a better support brace for your knee. It will help so much for mobility.
             As for me, its been a tough day. Left work early. Just anxious,  and worried about results. I keep having this pain on my right side and doctor keeps telling me its not my liver. It sure feels like my liver area. Also as I was leaving his office he says hows " no one " he is treating with S/ O has relapsed. That makes me worry as what is he gonna do if I relapse? Tell me I'm the only one? Almost feel like its setting me up for a hard time if I do relapse.  I pray I don't.  Sorry for whining.  Just afraid. Thanks for being so supportive. ... Sunrise
Title: Re: Harvoni Side effects
Post by: BattleTheBeast on January 23, 2015, 08:37:01 pm
Sending you a cyber hug Sunrise! I am going to be a big mess while I am waiting for results as well but we have to remember that no matter what we will beat this beast and we have the best chance ever to do so. You are going to win and we are going to cheer for you and laugh and cry tears of happiness with you when it happens.


xoxoxox

Mel
Title: Re: Harvoni Side effects
Post by: sunrise on January 23, 2015, 08:48:08 pm
Thanks Mel!
          Sending big hugs your way! Where have you been? Its been alittle quiet without you around! I know you've been in and out of forums, but we haven't chatted. How are you feeling? Skin finally calm down? Enjoy your evening.  I'm already in bed.... Blessings Sunrise
Title: Re: Harvoni Side effects
Post by: Katie on January 23, 2015, 09:12:51 pm
Oh Sunrise.  I'm sending you a big (((((HUG))))) right now.  I can't imagine going through what you and so many others have and coming to the end of your treatment and the waiting just has to be a nightmare.  All of you have been such an inspiration for me and you are in my thoughts every day.

One thing I am confident about is that this research is not over and they will improve and have other treatments available.  This breakthrough in 2013 is what spurred on to Harvoni and I have no doubt other improved treatments are right around the corner.

Keep the faith and know we share all of your concern and fears and hopes in one form or another.  Those little anxieties and worries creep in and we just have to concentrate on the facts and how this virus has met it's maker and is DYING or is DEAD.

The pain you are experiencing could very well be your gallbladder, as it is all connected.  Or maybe it is your liver readjusting to working again and still healing and repairing itself.  It has been under attack for a long time and the repair will take time as well.

Sleep well Sunrise and hope you feel better tomorrow

Katie
Title: Re: Harvoni Side effects
Post by: sunrise on January 23, 2015, 09:28:43 pm
What a great spirit you have!
         You are right. I must remember this isn't the end. Just the beginning.  I hope everyone and their tx. are all doing well. Just alittle battle weary. Have a goodnight all .... Blessings .. Sunrise
Title: Re: Harvoni Side effects
Post by: Mugwump on January 24, 2015, 01:18:47 am
Thanks for asking Katie
            Good that you have a better support brace for your knee. It will help so much for mobility.
             As for me, its been a tough day. Left work early. Just anxious,  and worried about results. I keep having this pain on my right side and doctor keeps telling me its not my liver. It sure feels like my liver area. Also as I was leaving his office he says hows " no one " he is treating with S/ O has relapsed. That makes me worry as what is he gonna do if I relapse? Tell me I'm the only one? Almost feel like its setting me up for a hard time if I do relapse.  I pray I don't.  Sorry for whining.  Just afraid. Thanks for being so supportive. ... Sunrise
Sunrise, for years many live with slight pain from the bile duct. I know I have as any pressure from the upper large intestine or a bloated digestive system with gas has caused pain. It is very hard to quantify as it comes and goes. My infectious disease specialist said that it is common for those who have had mild cirrhosis to experience bile duct and gall bladder pain. So I live with this problem.
Taking Harvoni has definitely highlighted the pain but it is absolutely nothing in comparison to the pain I experienced that finally led me to go for interferon-rib treatments 11 years ago. At that time I had driven 16 hours straight to come home for 4 weeks before retuning to the north of Canada to work as essentially a cook who took care of a small crew with emergency first aid training and experience in reading logging plans so I was essential a second foreman and took care of many details other than safety and the camp operations when the boss was away. So the job was a very good one that I could not afford to drop.

The pain at that time became so bad that I had to give up work and the blood work indicated that HCV was doing the dirty work and starting to cause cirrhosis. So I had to make a choice between being treated or possibly going down for the count if a secondary viral infection caused my immune system to go for six.

What I am saying is because the Harvoni is causing the liver to discharge the cells that have been killed by HCV more rapidly than we are accustomed to then those of us with even slight liver damage will experience a greater level of bilirubin production. This excess of waste from the liver which is cycled through the digestive system and kidneys can and does exacerbate a sensitized bile duct and gall blader system (if you have one).

I almost went into emerge a week and a half ago because of biliousness and gall bladder pain, but the great news is that it is finally starting to ease off.

Remember taking an antacid is contraindicated on Harvoni so please consult your specialists if the pain gets any worse and like me report this as a side effect to the toll free contact line for Harvoni, the number is printed on the big sheet that comes with the meds.

KIck the crap out of this disease Sunshine and everyone here. The chance at a future without HCV demands that we get mean with the little gremlins and squash them into hell were they belong. Don't ignore pain but put it in perspective and find out why, chances are it is caused by the death of cells that had gremlins and their millions of zombie children eating away at your liver!

Hugs and regards
Eric
Title: Re: Harvoni Side effects
Post by: Katie on January 24, 2015, 01:29:38 am
Eric, that last paragraph was VERY visual.HAhahaha

"the death of cells that had gremlins and their millions of zombie children eating away at your live"

Good info for sunrise and all of us.  I've had an intermittent dull ache once in awhile that was unusual and your comment makes sense. Thanks

Katie
Title: Re: Harvoni Side effects
Post by: sunrise on January 24, 2015, 01:57:11 am
Hi Eric
      That is good advice. I wish I had done the harvoni tx. I had already staetes my sovaldi olysio tx. 2weeks before harvoni hit the market. The wierd thing is I had this pain start in May, which is what led me to find out I had HCV. I was diagnosed in June 2014. My doctor ran alot of tests including an ultra sound, and much bloodwork. Who knows what it is , but makes sense it could be from my gall bladder. Although my bilnever got higher than .4 during tx. Thank you for your support and compassion. It sure goes a long way...Blessings ..Sunrise
Title: Re: Harvoni Side effects
Post by: kate0b1 on January 24, 2015, 08:22:44 am
@sunrise, you know I'm the queen of lab waiting anxiety right? so i know what I'm talking about lol, more people than not are cured with those meds so I'm feeling you got this ! and I'm pretty sure Mel has just refilled her purple ink so we don't want her to have wasted getting it filled.
@Mel, talk to me about the coconut rinse, this sounds very intrigueing

kate
Title: Re: Harvoni Side effects
Post by: BattleTheBeast on January 24, 2015, 10:22:23 am
Hi Kate,

Google "Oil Pulling" and you can read all about it and it's benefits.  Here's the Western take on it http://www.webmd.com/oral-health/features/oil-pulling (http://www.webmd.com/oral-health/features/oil-pulling)

Basically there is nothing bad about trying it and you can purchase an Organic Food grade Coconut oil without breaking the bank. If you don't like using it for swishing (oil pulling) you can use it for cooking, as a skin or hair moisturizer and a few other things. It really is a great "oil" to have around the house.

I think it's so funny because I had all these crazy thoughts in my head about what Oil Pulling was and had freaked myself out about it. I normally only swish with about 1-1/2 teaspoons because that's what fits comfortably in mouth. It's a little weird at first until the oil melts but once it does it's just like swishing with anything.

Do not spit it out in the sink or toilet because it hardens back into an solid and will clog your pipes up.

Let me know if you try it, love hearing how it works for others!

Sunrise,

I had started S/O the same day Harvoni was approved, I was only switched because of allergic reactions to the Olysio. I know how you feel about it, when Harvoni was approved I kept wondering if I should have just waited and taken that instead but I was ok with the S/O because I knew if for some reason I didn't clear with the S/O I could try the Harvoni next. It turned out that 9 weeks in I was switched over.

I don't know how this is all going to play out for me, being on both may be good or bad, who knows? What I do know is that my really sick liver has had a true break from this nasty virus for a while and that it feels good not to feel so bad. I am just trying to take it day by day and cherish these good days I get to have now. If I don't beat it this time,  I get to try another new medication and will beat it next time.

I think all of us on treatment already are all going to be SVR or on the way to SVR in 2015. I think 2014 was the year of the miracle Hep C cures and that that Beast is on it's way to Infinity and Beyond in 2015!

Mel
Title: Re: Harvoni Side effects
Post by: anniemybaby on January 24, 2015, 03:09:08 pm
Thanks Mel I'll hafta try that coconut oil I heard a lot of good things about it in nursing if I wasn't for my mouth I feel outstanding I hope I didn't just jinx myself hahaha but honestly I've been on harvoni 6 days n I already feel better than I have in yrs
Title: Re: Harvoni Side effects
Post by: BattleTheBeast on January 24, 2015, 03:39:01 pm
I am so glad you are feeling better! It really took me a while to feel better because I was so sick when I started the TX.

Now that I am many weeks into it I am really feeling human again, what an amazing chance we are all being given....

Mel
Title: Re: Harvoni Side effects
Post by: anniemybaby on January 24, 2015, 05:51:25 pm
I agree Mel we all got a second chance I'm not real sure of all my numbers everything happened so quickly I was diagnosed with hep c  may 2014 type 1a had a liver biopsy in July showed fibrosis don't know the exact numbers n I'm not sure wat my viral load is I'm not sure Dr ever told me everyone here is so educated I feel so lost that I don't know anything bout this disease inside my body why don't I know everything bout my stages n my viral load why didn't my Dr educate me
Title: Re: Harvoni Side effects
Post by: Katie on January 24, 2015, 06:07:06 pm
Hi Annie, Remember many of us were diagnosed years, if not decades ago so we've had time to research and then we also had tests every year with the opportunity to ask the doctor questions.

If I were you, I would either call, or stop by your doctor's office and ask for copies of all of your tests for the last couple years, or when you first became their patient.  They are your records and you are entitled to them.

Anytime you have a test, just ask for a copy and begin your medical file. This comes in handy down the road if you need dates and treatments for your history. Example: I had a Workman's Comp Claim and they wanted my history for the past 10 years.  I tried to just estimate the time of different procedures (I've had lots of joint issues) and even the years blended all together and my medical file really helped out.  With a case like that you need to be accurate.

You will learn to be proactive with your health and that's important. You are doing good so don't beat yourself up.  We all started where you are!

Katie
Title: Re: Harvoni Side effects
Post by: anniemybaby on January 24, 2015, 06:14:10 pm
Thanks Katie now I'm digging in my house looking for papers I know I have the results of my biopsy but I don't think I have the results of any of my blood work I will call GI Dr Monday and request copy's I'd like to keep track of my viral load next wk is my first blood test after starting harvoni I need to have blood work every 2 wks till end of treatment then she says I need to wait a total of 6 mo from time I started harvoni to be sure I'm cured
Title: Re: Harvoni Side effects
Post by: BattleTheBeast on January 24, 2015, 06:19:13 pm
Hi Annie,

Most doctors won't take the time to explain anything, I happen to be lucky and have an amazing Infectious Disease(ID) doctor who does.

The VL (Viral Load) is only important in the beginning so the doctor can review how long you have to be on treatment. They just want to know if it over or under 6 Million when you start and based on that it helps to tell them how long you should take the medication. The cirrhosis stage and if you have been treated for Hep C also help to determine the duration of the treatment. After that it only matters if the VL is still detected on Undetected.

AST and ALT levels: you can read about them here and it's easy to understand, they also talk a little about other blood tests for the liver. http://labtestsonline.org/understanding/analytes/ast/tab/test/ (http://labtestsonline.org/understanding/analytes/ast/tab/test/)

It will be important for you to know what stage you cirrhosis is because you will want to know if it's getting worse over the years after you are Hep C free.

SVR that people mention is Sustained Virologic Response - in English it means the blood test can't find any Hep C, so if you see SVR4 that means no virus 4 weeks after (EOT) End of Treatment. SVR8 means no virus 8 weeks after treatment and so on. The latest report is that any who reaches SVR12 is 99.8% cured and it's very very unlikely that you won't get to SVR24  so many doctors now consider SVR12 blood work 12 weeks after the end of treatment that is unable to detect the virus as Cured!

You have every right to ask for a copy of all of your tests at no charge from your doctor. I would call ahead of time and request they have a copy of your test results at your next visit. Once you have them, you will be able to learn more about what each one means by posting questions here (there are some really educated people who can help) or looking on the internet. You can also write a list of questions to ask your doctor at your next visit. In the beginning when I found out I went to my doctor with a whole list of questions myself:)

I have only known I had Hep C since August of 2014 and I also have 1a.

Don't feel bad that you don't know everything yet, it takes time to process all of this information but it is important for you to understand and have any questions you have answered.

I hope that helped a little and I wasn't too medical in my answers for you.

Mel

Title: Re: Harvoni Side effects
Post by: anniemybaby on January 24, 2015, 06:25:07 pm
Thanks Mel I didn't know all that stuff I'm gonna read up on all that thanks so much for being so informative I really appreciate that
Title: Re: Harvoni Side effects
Post by: BattleTheBeast on January 24, 2015, 06:40:38 pm
Hi Annie,

You are welcome, keep asking questions, it's how I learned what I know and that's not much compared to so many others on here.

I can remember a few months ago signing in and reading all the posts and feeling like I was reading a foreign language which I kind of was! It's amazing because I was also in such a brain fog from Hep C that I don't think I even had the capacity to learn what most of it meant until I was weeks into treatment and finally felt the fog lifting!

For me the whole point of being a part of this forum is to help each other with questions and our spirits and our knowledge. Remember all these new medications are really bleeding edge and here is where the real life information can be found, some of the trials were actually no not large and to me it's miraculous how quickly these medications were fast tracked to us with FDA approvals.

Mel
Title: Re: Harvoni Side effects
Post by: anniemybaby on January 24, 2015, 06:45:14 pm
Joining this forum was the best thing I could've ever done I've learned so much in a short time feeling blessed
Title: Re: Harvoni Side effects
Post by: lolita on January 24, 2015, 07:58:33 pm
Hello all,

I am a 42 year old female. I contracted Hep C from a blood transfussion when I was only a year old, at that time they didn't test for the virus, so grateful that this treatment is available for us. This is my third week on Harvoni, so far side effects have been: Headache, nausea, fatigue, loose bowels and abdominal cramps. I have a very active life with husband and three kids.
Last week I had my two week blood work and it came viral load undetectable.

Best of luck to all of you.
Title: Re: Harvoni Side effects
Post by: BattleTheBeast on January 24, 2015, 08:02:02 pm
Hi Lolita!

So glad you found us and that you are already on treatment and undetected! I can only imagine how busy you are with three children and a husband! Hopefully now that you are undetected the sides will start to settle down a bit for you.

Mel
Title: Re: Harvoni Side effects
Post by: Lukey on January 24, 2015, 08:42:21 pm
Hello all,

I am a 42 year old female. I contracted Hep C from a blood transfussion when I was only a year old, at that time they didn't test for the virus, so grateful that this treatment is available for us. This is my third week on Harvoni, so far side effects have been: Headache, nausea, fatigue, loose bowels and abdominal cramps. I have a very active life with husband and three kids.
Last week I had my two week blood work and it came viral load undetectable.

Best of luck to all of you.

Congrats on that and welcome.

How were your AST & ALT before and after 2 weeks of Harvoni?

Joe
Title: Re: Harvoni Side effects
Post by: Bob V on January 24, 2015, 10:26:04 pm
Welcome Lolita and congrats on the UD.
Title: Re: Harvoni Side effects
Post by: Bob V on January 24, 2015, 10:30:49 pm
Annie,
Don't feel bad about "not knowing all this stuff" I'm a registered nurse and I'm learning some "new stuff too" 

Bob
Title: Re: Harvoni Side effects
Post by: sunrise on January 24, 2015, 10:31:57 pm
Welcome Lolita
              Sounds like you are a real early responder. That's a great and combined with your health and age you will probably clear the virus well. Best wishes....Sunrise
Title: Re: Harvoni Side effects
Post by: Long_Haul on January 25, 2015, 10:13:19 am
Welcome Lolita, and WOOOOO HOO congratulations on being undetected so early. The side effects tend to reduce and mostly resolve as you continue TX, so don't worry it gets better.  If you haven't read it in the forum before, it is recommended that you drink as much water as you can to help keep the sides to a minimum. A good rule of thumb is to take your weight, divide it in half and that is the number of ounces you should drink. That works for most people.

Good luck and there is a lot of support here should you need it.

AL
Title: Re: Harvoni Side effects
Post by: anniemybaby on January 25, 2015, 05:00:43 pm
My mouth pain is basically gone with the mouth rinse I have some nausea today I'm on my 2nd wk of harvoni trying to do the whole lots of water but ugh I'm not a big water drinker I work all day in a nursing home not much time to stop n drink water when I get home I try to push to drink as much as I can but I gotta wake up at 4am for work n can't b running to bathroom every hour
Title: Re: Harvoni Side effects
Post by: Lynn K on January 25, 2015, 05:13:06 pm
Annie

Just wanted to share I am very bad at drinking water are any other fluids really I at a guess would say I drink 3 glasses a day between everything milk, juice, and water. And this is an improvement for me. But in the water and proper eating areas I am a poster child for all the wrong stuff so I would recommend not to follow my example.

One does what one can
Title: Re: Harvoni Side effects
Post by: Katie on January 25, 2015, 05:18:27 pm
Good news Annie!  Hydrating yourself is important so maybe drink a full glass or two first thing in the morning and on your lunch break so you aren't "floating" when you go to bed.  Do you have the time to eat small amounts of food throughout the day?  That might help the nausea and I have seen that recommended. 

I basically wasn't drinking any water, or hardly any other liquids during the winter months and have noticed many improvements from hydration since I started with this treatment.  I am definitely going to keep it up.  I find now I actually crave the water when I fall behind, like when I go to town shopping and am gone for a few hours. so do the best you can.  You could add a squeeze of lemon to it if that would help.

Yesterday afternoon I got a bit light headed and shaky feeling and then realized all I had to eat that day was a grapefruit and a piece of toast.  I needed some protein so took a handful of nuts and got to making an early dinner.  I sometimes just forget to eat, but unfortunately I always make up for it in the evening.

Take care and the weeks will fly by.  Here's hoping your improvement continues!

Katie
Title: Re: Harvoni Side effects
Post by: Sweetie1 on January 25, 2015, 06:58:43 pm
Hi, I was wondering if anyone else is getting chills, low fever and night sweats on Harvoni? I have 10 days to go out of 3 mths. Undectable at 4 weeks. Keep thinking maybe I am coming down with something but no other symptoms except joint pain.  Thanks so much!
Title: Re: Harvoni Side effects
Post by: anniemybaby on January 25, 2015, 07:51:21 pm
Thanks Lynn yea I'm bad with water n good diets but I'm at least trying on the water thing as far as eating properly not gonna happen not with my lifestyle hahaha I've had a crazy 2014 first had a lumpectomy on breast then a hysterectomy then found out about hep c so 2015 best b my year lol thanks Katie I definetly will do lemon water
Title: Re: Harvoni Side effects
Post by: Katie on January 25, 2015, 08:30:45 pm
Hi Sweetie,

I haven't heard about night sweats as a side effect but everyone is different.  I know I keep saying being dehydrated can cause lots of things that are really subtle and hope you are keeping hydrated.  I contribute much of my improvement to that as I didn't do a good job at drinking water, especially in cool or cold weather.  Since your liver is working and you have drugs in your system, water helps flush all the toxins out, and that's important for so many things, such as your digestive system, your sinuses, two of which have improved greatly with me.  Just my opinion, but many others have found that water helps with problematic side effects.  If you haven't tried drinking at least 2 quarts of water a day, you might want to give it a go!  I take my pill a couple hours before bedtime and am sleeping better than I have in years so I am unable to comment on your daytime drowsiness.

Good luck to you with your end of treatment!  I start my third and final bottle this Tuesday and can't believe how fast the time has gone by.  Feel better!

Katie
Title: Re: Harvoni Side effects
Post by: Katie on January 25, 2015, 08:36:40 pm
Wow Annie...you really have had a rough 2014!  Medical issues really interfere with your life and I am proud of you for working so hard in an important area and reaching out to get through this.  Just keep your spirits up and do the best you can at taking good care of yourself.  Your liver is busy removing toxins from your system with the help of Harvoni so any help you can give it is beneficial.

Take care and good thoughts sent your way!

Katie
Title: Re: Harvoni Side effects
Post by: uriah on January 25, 2015, 11:05:02 pm
Started takingHavoni two days ago first day taking it I started getting bad headaches so I started drinking alot of water headaches went away. I dont know if this will help anyone  that is taking this medication but it help me. It has help for two days now.
Title: Re: Harvoni Side effects
Post by: mario555 on January 26, 2015, 08:19:28 am
Welcome to the new miracle treatment Uriah. You are right to take in lots of water at the beginning. There is some kind of "flushing" that happens and you need water to make it happen! The water requirement will fade somewhat as weeks go by... (and the headaches too).
Here the group advocates 1 quart per 100 pounds. I have a little different recipe with 1/4 of the water to be replaced with Gatorade so as not to deplete my salts and electrolytes! Try what works best for you! Good luck with the treatment!
Title: Re: Harvoni Side effects
Post by: julio on January 26, 2015, 02:44:24 pm
Hi Everyone, I  just   wanted to introduce myself. I  am a 57 year old  male and I  believe I  contracted this virus in November 1983. I  went  hepatitis acute approximately 4-6 weeks after exposure, I  suffered Jaundice,  lack of appetite, fatigue  nausea etc.
Fast  Fwd.
We  have been monitoring  the  liver and  viral  load  through   biopsies  than  later on  a  yearly  ultrasound. The   peg-combo  was so  debilitating  that  I  would  have  had to  taken  leave  from my  career without  pay  because of  the  physical  demands  and geographic isolation of  my  job at  sea so we  decided to  wait  until  either  my  liver  started  going  fibrous  or  a  miracle  drug  was approved  by FDA with  minimal side effects. Well it appears the  miracle is  here.
I  am  treatment Naive
Viral  load is  650K  to  1.2 million  depending  on  the year but  for the last c couple of  years it  has not  gone  above  a million.
I  have  Genotype 1
I  started  on Harvoni  23 January  so I  have  taken it only 4 or 5 days.
I  am  hydrating,  drinking about 8  bottles of water daily. I have  not  had  any   side effects yet. I  did  feel  a weird  headache last  night on the  sides of  my  head but  went to  sleep early. I am taking  it  in the  morning   after  a light  breakfast and  washing  down the  pill with a  bottle of  water. I  am  afraid  to  even  dring  hot  tea  withing  30  minutes  because I  want this  medication to  work and  don't  want to leave anything in doubt.
Evidently  my  liver  was showing  fibrous  because they  can tell from blood tests?  I  have been approved  for 90  days and   to  be  frank I  have  not  been  feeling  great the  last  few  years but that  could  be  because I  am now 57. I  have  fatigue at  times  and  headaches and  I  am  just  so  happy to  have this  drug.
I  will keep  everyone  posted on my  progress and  let  you   know  how  my  viral load is at 4 weeks. Keeping  optimistic  and  always  grateful  for a  chance  to  be  healed of  this  burden.
Title: Re: Harvoni Side effects
Post by: Long_Haul on January 26, 2015, 03:00:15 pm
Welcome to the forum Julio.  It sounds like you have been given some good advice regarding treatment. With such low viral load, you should make it to Sustained Viral Response(SVR). Harvoni in trials was over 95% effective at attaining SVR in patients. Drinking the water is a key in making it with minimal side effects. I am in my fourth week and I get an occasional headache. Having done 3 Interferon based therapies with Ribavirin, I say you made a great choice not to go that route. You will find a lot of good information on the site and the great support here is invaluable. Feel free to speak up if you need an answer as there are no "stupid" questions.  We are all here for the same reason.

Best of luck in your treatment and keep us informed of your progress if you can,

AL
Title: Re: Harvoni Side effects
Post by: BattleTheBeast on January 26, 2015, 03:11:37 pm
Hello Julio!

Glad you found us and welcome. Thank you for sharing your story and like Al said you are on your way to a new life.

You will not be blaming your age on how you are feeling very soon. I think many of us blamed our tiredness and aches on age when it was Hep C all along. I am many weeks into my TX and feel like 10 years have been given back. I can't wait until you tell us how great you feel and that you are Undetected!

Hang in there and post away!

Mel
Title: Re: Harvoni Side effects
Post by: kate0b1 on January 26, 2015, 05:16:03 pm
welcome julio, it's nice/not to have so many travelers with us on this journey. There is a lot of great people here and a ton of great information.

kate 8)
Title: Re: Harvoni Side effects
Post by: Bob V on January 26, 2015, 09:54:08 pm
Hi Julio, welcome.
Title: Re: Harvoni Side effects
Post by: anniemybaby on January 27, 2015, 08:35:34 am
Been on harvoni 9 days now n today when I got up I couldn't function felt very very tired I had to call into work n use n FMLA day I'm still feel very tired which is odd cause I was fine before
Title: Re: Harvoni Side effects
Post by: BattleTheBeast on January 27, 2015, 08:55:02 am
Been on harvoni 9 days now n today when I got up I couldn't function felt very very tired I had to call into work n use n FMLA day I'm still feel very tired which is odd cause I was fine before

Annie,

Take that as a good sign! That means the meds are working and kicking the crap out of the virus, it usually happens somewhere between 1-3 weeks after you start. I had a really high viral load with cirrhosis and was pretty sick when I started. I really hit a wall about week 2 and felt like I couldn't get out of bed for a week, My viral load went from over 8.3 Million down to <15 at my week 4 blood test. That's serious work that medication is doing!!!

No worries, you will start to feel way better very soon!

Mel
Title: Re: Harvoni Side effects
Post by: julio on January 27, 2015, 09:31:21 am
Thank you for the warm welcome it is much appreciated since this HCV has been a weight on me for years. I have not been open about it and have felt stigmatized because of the cause of exposure which wAs a lifetime past.
I am o oh on day 5 feeling mild heads headAches ocasionaly but I am drinking 8 liters of bottled water a day.
I always worry that if I am not feeling very adverse that the medication is not effective on me.
I will have to wait for the 4 week test which is going to require patience and faith which at the moment is not one of my stronger virtues.
I am grateful for a chance to put this whole disease in my past.
Title: Re: Harvoni Side effects
Post by: BattleTheBeast on January 27, 2015, 09:40:14 am
Julio,

We are so glad you are here sharing with us. The more the merrier and we all learn so much from each other! Don't worry because you aren't feeling bad. We all react different to the medications just like we have all reacted different the the actual virus. There's no clear path except for Infected and Undetected and finally one day soon SVR!

You are doing a great job with the water, keep it up!

Patience is something we are all struggling with, we struggle to have the patience to get the medication, then we struggle waiting for it to finally arrive, next is being patient while we wait for that first post starting blood test and on and on... I think the worst one for me is going to be the POST tests, waiting to see if the beast is really gone!

Today to make my liver happy I am on a mission to eat a whole bunch of fresh blueberries. They were on sale so I grabbed a couple of pints and they are supposed to be excellent for our livers! I know mine needs all the help it can get :)

Have a great day and keep posting!

Mel
Title: Re: Harvoni Side effects
Post by: anniemybaby on January 27, 2015, 10:00:25 am
Go for my first blood test Thursday since started harvoni feeling nervous
Title: Re: Harvoni Side effects
Post by: Bob V on January 27, 2015, 10:10:25 am
Been on harvoni 9 days now n today when I got up I couldn't function felt very very tired I had to call into work n use n FMLA day I'm still feel very tired which is odd cause I was fine before
-----------------
Annie
This was how it went with me too, it lasted a few weeks. Now I'm still tired but feeling a little better each day. Today will be dose 51 for me.

Good luck with your labs.

Bob
Title: Re: Harvoni Side effects
Post by: anniemybaby on January 27, 2015, 10:32:36 am
Thanks Bob I'm so glad I'm not alone before this forum I felt like u was so alone I would tell friends n family wat I'm going through n they gave me some support but really couldn't understand my situation
Title: Re: Harvoni Side effects
Post by: Amj1951 on January 27, 2015, 10:41:57 am
I am o oh on day 5 feeling mild heads headAches ocasionaly but I am drinking 8 liters of bottled water a day.
I always worry that if I am not feeling very adverse that the medication is not effective on me.

Julio, you said your drinking 8 liters of water each day? That seems a awful lot of water. Did you mean 8 glasses?

Meredith
Title: Re: Harvoni Side effects
Post by: anniemybaby on January 27, 2015, 12:06:41 pm
Thanks Mel that makes me feel much better
Title: Re: Harvoni Side effects
Post by: BattleTheBeast on January 27, 2015, 12:19:01 pm
You are so welcome Annie, we are the Lone Warriors out here, fighting away. It's tough that Hep C has such a bad stigma. It's a battle we are all facing together. It's meant so much to me to have this forum and all these awesome people holding my virtual hand through this.

Seriously, no matter how close you are to someone or try to explain they just don't get it. They try but they think it's like a flu and all of the sudden we are on medication and should feel better. It doesn't always work that way. I have good days and I have bad days and but every month I am starting to have more good than bad, so something is working :)

Hang in there girl! We are always going to be here for you and each other.

Mel
Title: Re: Harvoni Side effects
Post by: julio on January 27, 2015, 12:24:28 pm
Julio, you said your drinking 8 liters of water each day? That seems a awful lot of water. Did you mean 8 glasses?

Meredith

I m sorry maybe I am mistaken, I drink 8 bottles of water a day each one is ... Maybe 2 pints of 16 oz?
Title: Re: Harvoni Side effects
Post by: anniemybaby on January 27, 2015, 01:07:22 pm
Mel your an absolute warrior I'm glad I've met you and all the others on this forum n your right as soon as I confide in someone its like I have the plague n I'm a drug addict hep c has such a bad rap that no one listens to your whole story they only hear hep c n that's it I've had a few issues at my job because I work in healthcare of course hr know my situation because my GI Dr gave me n FMLA for a yr so I can take it as I need it  :)
Title: Re: Harvoni Side effects
Post by: Long_Haul on January 27, 2015, 02:33:41 pm
I actually used to work in a local hospital and had been on three of my previous TX excursions while there up until I retired. I have always been an open advocate for getting those around me to understand HCV and I never experienced much stigma from the people I came in contact with. Maybe it's the culture I was in and my status with the people I worked with. I never was openly treated differently. I think because I always made it a point to help eliminate any prejudice when I ran across it. We had Medical professionals and others that got bad raps when they contracted HCV and those that had negative comments got an education very quickly. I usually asked the  detractors what they knew about HCV and almost always learned how much misinformation they had in their heads. It did not take long to convince them they were wrong using logic and  some real facts and examples to support the true information. I worked there 16 years and was always given much support from the staff and support people around me when I went through TX. When I had to take time off during INF/Rib/Incivek treatment and got too sick to work, I got a lot of contact at home, cards, phone calls wanting to know how I was doing.  We are the best ambassadors for educating people an HCV and I never miss a chance to inform people about how easy it is to get infected if you are not careful. 

When I listen to you all share your experiences here, I love this site more. We will make a difference in our lives by being the best advocates we can for our own health care and educating others about their situation.  It works and this is a great example.

Thanks to all of you for what you do here, it is priceless!

AL
Title: Re: Harvoni Side effects
Post by: Katie on January 27, 2015, 03:09:05 pm
I posted this awhile back on a different thread and so thought I would share it again as it is a common story with us and I think it's good to know we all do what we have to do to maintain a somewhat normal life when we have an infectious disease.

Al, Your experience in sharing may have been more positive because you were a health care worker. For those of us who have no idea how we got this monster or those of us that made mistakes in our past might cause the uninformed to draw incorrect conclusions about us personally and about the disease. 

Part of my reason to not share was I didn't want to constantly think about it or try and explain something that I couldn't give answers to.  HOW, WHERE, WHEN, WHY and what now?

Previous post:

After 9 years of living with Hep C basically alone, I am now feeling OK about talking about it. I am retired (I made it) so no longer worry about my job.  It was stressful, as I worked for the government as a research biologist and supervised up to 15 technicians and then there is ALL of the politics, so even though I loved the work, I am glad to no longer have that responsibility, and the last couple years were difficult for me. 

I can talk about it because I now have GOOD news about the treatment and I feel I need to educate people to get the word out and help others.  You'd be surprised how many health care professionals know nothing about Harvoni, and how many of them are misinformed about Hep C.  Since they are at high risk you would think they would get updates.  I talked to the phlebotomist at my 4 week blood draw, and she was thrilled to hear about it and asked me to let her know what her results were.  Getting that info out is important.  As for my friends, I see the shock on their faces when I tell them, and a couple have said they knew something was going on with me, but as soon as I tell them about the treatment I am on, the relief on their faces spoke volumes!

It is difficult thinking of yourself as a biohazard and really, that's how I did feel.  I followed the research and just knew they would have a breakthrough.  I am delighted it came around before I had serious liver damage and is now available to cure me.  My blood won't be poison any longer!!!!  It was also surprising how many "friends"  I never saw again after they found out I no longer drank (which I wasn't a heavy drinker and actually quit before the diagnosis because of how crappy I felt) but I guess it was their own insecurity.  No more invites to their Bar-B-Qs  etc, so I guess they weren't worth much.   :P

Genotype 1 is the most common in the US and had low cure rate with previous treatments and bad side effects but that is what Harvoni can now cure.  Hearing the diagnosis for Hep C would be much easier to hear now than it was just 2 years ago as the treatment available then was unlikely to cure you.  So no matter what your results are, the news is no longer a life sentence.  Like my friend told me, what does it matter HOW you got it just move ahead and deal with it.  We all have your back and are here for you.  Today is my 42nd pill, so I am half way there.  The weeks have gone by so fast!

Breathe deep and think positive thoughts.  Everything will be OK.

Katie (January 14, 2015)

I am starting my third and final bottle this coming Thursday!
Title: Re: Harvoni Side effects
Post by: Lynn K on January 27, 2015, 03:25:14 pm
Julio

So I figure you are drinking about 4 quarts of about 4 liters if I figured that correctly. That is a safe amount but few people realize you can drink too much water so the 8 liters made me a bit concerned.

Here is a link from the Mayo Clinic about recommended daily fluid intake for anyone interested

http://www.mayoclinic.org/healthy-living/nutrition-and-healthy-eating/in-depth/water/art-20044256

How much water do you need?
Every day you lose water through your breath, perspiration, urine and bowel movements. For your body to function properly, you must replenish its water supply by consuming beverages and foods that contain water.
So how much fluid does the average, healthy adult living in a temperate climate need? The Institute of Medicine determined that an adequate intake (AI) for men is roughly about 13 cups (3 liters) of total beverages a day. The AI for women is about 9 cups (2.2 liters) of total beverages a day.
What about the advice to drink 8 glasses a day?
Everyone has heard the advice, "Drink eight 8-ounce glasses of water a day." That's about 1.9 liters, which isn't that different from the Institute of Medicine recommendations. Although the "8 by 8" rule isn't supported by hard evidence, it remains popular because it's easy to remember. Just keep in mind that the rule should be reframed as: "Drink eight 8-ounce glasses of fluid a day," because all fluids count toward the daily total.
Title: Re: Harvoni Side effects
Post by: Long_Haul on January 27, 2015, 04:19:41 pm
@Katie, you make excellent points and I fully support anyone's decision to remain quiet about their illness. That is a personal choice. I am not saying that I haven't seen the stigma outside of work. I have had the loss of invites form "friends" that weren't. They were just looking for something from me. You can't educate those that don't like to do things without some emotion attached, they don't listen unless you somehow break through that FEAR that they harbor. The "It can't happen to me" attitude is often lost when you get to have a non-emotional conversation with some people. Usually an uphill battle, but sometimes a breakthrough occurs. In my career, I have been a technician, installer, manufacturing engineer, supervisor, manager, mentor and shoulder to lean on. I have met a lot of interesting and great people and some not so good people and one thing I learned is that everyone has a reason for who and what they are.  Either way, they have a right to be who they are and I am not the one to judge them. For me I treat people like I want to be treated and am frank about topics I know about and listen when I don't. It has served me well to this point.
I wish I was a health care worker, but I was actually technical support staff, so I worked with everyone including the CEO. I always had a great rapport with those I supported and always tried to make them know their success was important to me and that we(The customer and I) as a team would resolve their issues, so they most always felt respected. They in turn returned that respect when we spoke of other things. I am very grateful for having been able to do that.  I honestly do believe I was able to have those discussions at the hospital because people had access to do follow up on medical info we discussed and found what I stated was true. It was a cultural thing that might not work elsewhere.

Here is an example of the culture, when I was about to start my first Int/Riba TX, I sat down with my boss and told him what was about to happen and his response was be here when you can, get your work done on time and make sure I have satisfied customers. He allowed me to nap during the day as needed in an area secluded from view and when I finished the 48 weeks of treatment (5 shots of Interferon a week), I had not missed a day of work related to treatment. I got a great performance review and when I related the fact that I appreciated what he did for me during TX, he said, I forgot you had done that and it was never an issue. The same for the second PEG Int/Riba and again no issues. I guess we all have different opportunities in life and do what we think is best to survive.

Everyone's situation is different and I know I was lucky to be where I was for that part of my life. If it is safe for you to help others, I urge you to do so. Only you can judge that for yourselves. In the meantime, what we share here is invaluable,


AL
Title: Re: Harvoni Side effects
Post by: Katie on January 27, 2015, 04:35:14 pm
Thanks so much for sharing that Al.  I agree and now feel good about sharing information and this forum has been irreplaceable.  The few close friends I did share my health issues with constantly told me my fatigue, and my insomnia and my brain fog was due to age.  They actually got me believing it but now I know it was the Hepatitis as all of those symptoms have gone away.  I feel 10 years younger and have the spunk now, to stand up and educate.  That in itself feels good.

I wish you good health and the cure as you have fought this monster for a long time. We are fortunate to have this treatment and each other for support throughout as that keeps the seed of doubt from creeping in.

Time to get moving and take a walk while it isn't raining.  Hope all of you North-easterners are safe and warm and if you can, please go out and make some snow angles for me!   :D

Katie
Title: Re: Harvoni Side effects
Post by: mario555 on January 27, 2015, 06:59:26 pm
Good news for us who are on par for a successful treatment! I had read somewhere about the improvement in our condition after a successful SVR. I found the article and for the ones who love reading tons of complicated medical material, I have included the link below:

http://www.annalsofhepatology.com/revista/numeros/2014/HP144-03-Long%20(changes)%20(F_060614V)_PROTEGIDO.pdf

For the others, it says that after following people for 15 years after a successful treatment with Interferon (there were not that many, believe me....) there was 50% of patient who showed no more fibrosis and 40% who got rid of the cirrhosis after 5 years post SVR. Most had a visible improvement in their general condition with less fatigue being the most noticed improvement. 
I was always scared of still being sick after treatment and at increased risk for further health problems.  The article shows that at least, the progression stops and for most, a sizeable improvement happens! So, good luck, keep taking your pills and be happy (that we are still alive to see this new treatment!)
Mario
Title: Re: Harvoni Side effects
Post by: anniemybaby on January 27, 2015, 07:05:30 pm
I've decided to stay home for a couple days I'm just soooooo tired almost to tired to even drive that's my only problem right now I don't believe in energy drinks n not sure I should b drinking them while on treatment
Title: Re: Harvoni Side effects
Post by: sunrise on January 27, 2015, 07:23:53 pm
Hey Annie
gee I hope you're feeling better soon. You're right energy drinks are no good for you even if you're not on treatment
Maybe a little coffee might help.Coffee actually is good for your liver so they said in some studies.
Title: Re: Harvoni Side effects
Post by: Katie on January 27, 2015, 07:35:13 pm
Annie, if you are tired, rest. Listen to your body and if at all possible don't push yourself.  Your body is working hard to get rid of this.  One reason I am feeling so good is I have NO responsibilities so can sleep as long as needed and take it easy if that's what my body needs.  I am lucky that way where many here have to continue to work or have children to take care of.  I even make my appointment after 10:30 as my mornings are slow and if I rush my day doesn't go well.

Hope you energy level improves.

Katie

Mario:  Thank you for that information!  I will read the site you posted and the news you shared is great about the liver healing post treatment!  I was under the impression cirrhosis sufferers were stuck with it and the problems it caused, so thank you again!

Katie
Title: Re: Harvoni Side effects
Post by: anniemybaby on January 27, 2015, 07:52:32 pm
Thanks sunrise n Katie n yes I will b resting n I am a coffee person but it seems when I'm real tired I drink a cup of coffee n it just has my heart racing but my body is just blah ugh march 14 is hopefully my last day on treatment unless they opt for the 12 Wk instead of the 8 I guess it all depends on wat my blood work says
Title: Re: Harvoni Side effects
Post by: BattleTheBeast on January 27, 2015, 08:25:29 pm
Katie,

You sound just like me :) Listen to your body! It took me many many years to really understand and do that. I wish I would have listened sooner but happy to have that tiny bit of wisdom these days!!

Annie,

It's a ride, go with it and allow yourself the time to rest, it's ok. Be kind to yourself and know that you are going to beat the beast. It's a little tough right now but it will get better! I love how smart you are being about this!

Mel
Title: Re: Harvoni Side effects
Post by: anniemybaby on January 28, 2015, 04:44:42 am
Thanks mel :)
Title: Re: Harvoni Side effects
Post by: Lynn K on January 28, 2015, 06:07:48 am
Hi Mario

Thanks for the info very informative. I have always figured the damage would stop with SVR and just hoping I am not at the tipping point when I make SVR and go over the cliff anyway. So 50% chance of a reduction in Fibrosis level and retreating from the cliff is the best odds I have heard in years
Title: Re: Harvoni Side effects
Post by: kate0b1 on January 28, 2015, 06:15:03 am
morning everyone, tomorrow is my 1/2 day, I'm super excited (and wow not that nervous) about being half way done  8)

@al, I see a hepc ambassador in our future, great post

kate

 
Title: Re: Harvoni Side effects
Post by: sunrise on January 28, 2015, 06:34:44 am
That's great news Katie
         It seems that these new treatments fly by once you get started. Im 5 weeks post tx. already! You will be amazed as your tx. will be done and over with in no time. On the road to being cured Yeah! Have a great day.
     Everyone have a great day as well. Blessings Sunrise
Title: Re: Harvoni Side effects
Post by: sunrise on January 28, 2015, 06:35:43 am
I meant Kate ;)
Title: Re: Harvoni Side effects
Post by: Mugwump on January 28, 2015, 07:13:17 am
Thanks sunrise n Katie n yes I will b resting n I am a coffee person but it seems when I'm real tired I drink a cup of coffee n it just has my heart racing but my body is just blah ugh march 14 is hopefully my last day on treatment unless they opt for the 12 Wk instead of the 8 I guess it all depends on wat my blood work says
I have found that strong coffee now makes me wired like a kid on red bull. Try half caf it works for me. If you read the studies the SVR rates are better with 12 TX weeks regardless 8 on doctors discretion and only if absolutely no liver problems are evident and the VL is low at start of treatment. So I would not take the chance given the choice.

The SVR for those who have fairly severe cirrhosis indicate that there were relapses after 12 weeks TX. So unfortunately for me the TX option of 24 weeks is necessary.

My nurse indicated that if I do have a relapse or do not clear in 12 or 24 there are new treatment options coming which should be approved within 3 months. I will have a 12 week VL done but the kicker is the 6 month post treatment and between that what happens on my regular liver tests post TX. I feel like a pin cushion....LOL

I know what you mean about being tired though and discussed this aspect today with Haley my nurse. One thought is that the level of waste coming from the liver as the treatment progresses to the point of finally allowing the liver to create new cells is greater in those with cirrhosis and the efficiency of the conversion of glucose is not as good as those on the treatment who do not have cirrhosis at all.

As the liver heals we should start feeling less tired as Harvoni itself should not cause one to experience weakness the way interferon does and also does not effect the production of blood cells the way Ribaviron does.

Here is hoping that we all do the happy dance at the end of 12 weeks and the final weeks of TX for those with minor liver damage turn out to be like the first 4 where the extra energy was evident.

I will post some happy dance music in the form of an early baroque leg busting 2 over 3 step dance and gigue from the Canary Islands as soon as my energy level is back up again. You have my word on that! Heck I might even post the old saw Kemp's Gigue but at a ripping tempo that even Elizabeth the First would trip over.  LOL

Eric
Title: Re: Harvoni Side effects
Post by: mario555 on January 28, 2015, 09:14:19 am
Hello to all. I am now 11 weeks into a 24 weeks treatment. Everything appeared to go fine with the treatment and all side effects were subdued until yesterday!
Yesterday just before taking my pill I had an attack of ringing in my ear. I had had the problem during the first few weeks and it had abated to a 1-2 level. Yesterday it went up to a 9 for no apparent reason. My heart rate was above 80 at rest and I 'm sure my blood pressure was sky high but had nothing to check it with. What a freakish experience!
Another problem I have is a high level of panic attacks when I think of something stressful. Sometimes I' m calm, at rest and then I think of something related to work and in 2 seconds my anxiety goes to a 8-9 level.
Both those problems last 45 minutes before abating.
Anybody had those problems happening after being 'on the pill' for many weeks?
Title: Re: Harvoni Side effects
Post by: sunrise on January 28, 2015, 09:41:02 am
Good morning Mario
     I took a 12 week course of Sovaldi with Olysio, but to be honest with you I had some of the similar side effects. My anxiety level went through the roof, and my blood pressure went up. He prescibed clonapin, and that seemed to help some.I've always had low blood pressure, but it went high for me. You should tell your doc about it. I didn't get ear ringing but my doctor did not seemed concerned. Good luck with that ...Blessings Sunrise
Title: Re: Harvoni Side effects
Post by: JoeK9999 on January 28, 2015, 10:21:13 am
Mario,
I finished 12 weeks 13 days ago.
The last 2 weeks I had a lot of dizziness, developed an itchy rash on my right ankle.
Swollen groin on right side which I thought was  a lymph node.
The dizziness was gone wihtin 2-3 days of finishing the meds, but blood pressure is still high.

I went to my general internist doctor yesterday. Blood pressure still high.
It was always normal around 120/80 or lower before Harvoni. He said the swollen groin is fatty tissue mass (lipoma) and not my lymph nodes. I am getting an ultrasound for it today if I can get it scheduled. He said lower my salt intake and see if the BP goes down.
Title: Re: Harvoni Side effects
Post by: moma on January 28, 2015, 03:51:51 pm
Hello this is my first time communicating with a group on line. I feel a little apprehensive. This my 12th day on Harvoni.
I have had hep c since 1971. During a c section that turned into a hysterectomy I was given a transfusion of contaminated blood. It was all kept pretty much in check until 2001 when I had my 1st heart attack. My liver counts went sky high. I went on Inter/ribro  treatment for 2 months and then couldn't take the horrific side affects.
A year after that-another heart attack. I lost my job and had to move because of health. It has been a very long road to feel somewhat normal again. The thought of Harvoni, another medicine, going into my body has scared me to no end. Anxiety has now turned into depression. Does anyone else feel like this? I feel exhausted mentally and physically. And don't have much faith in any of this. Normally I'm a positive person, the glass is always half full. Has Harvoni messed with anyone's emotions?
Thanks for letting me get this out. MoMa (my grandsons name for me)
Title: Re: Harvoni Side effects
Post by: Katie on January 28, 2015, 04:13:03 pm
Hi Moma and welcome!

Fear and bad experiences will cause depression and any new medication will have an impact.  This forum will be so beneficial for you so read previous posts and you will see you are not alone.

I am a worker.  I love working on my house and for the past 4 years, have been remodeling one room at a time, always moving forward, no matter how crappy I felt from Hep C.  I chose not to try the old treatment do to the low cure rate and bad side effects and am grateful I waited for Harvoni.  My treatment has been easy, in fact I am feeling better than I have in over a decade.  One thing I have noticed is my motivation is GONE.  I just can't get up and at it and could see where depression could kick in, however my undone projects or not so clean house just doesn't bother me.  I have a "what the heck attitude", and that is totally not me!  I even cancelled Christmas as I just didn't want to be bothered with it.  So weird.  So I have to say, the medication is causing this personality change.  Everyone reacts differently and do whatever you can to pull yourself out of depression so you don't spiral down.

This treatment is a miracle and you will see improvements as your liver starts detoxifying your system and doing it's job.  We are so blessed that this breakthrough came in time to help us and we will beat this monster!  Many taking this treatment, including myself, find that drinking lots of water (1/2 gallon/day) to help flush the toxins, really can eliminate side effects or at least reduces them.

With your medical background, I would keep your doctor informed of any changes physically and mentally to make sure there isn't drug interactions.

You will be amazed at how being part of this group gives you support and lots of information.  I hope it helps you through this as it has me! 

Know you aren't alone!

Katie
Title: Re: Harvoni Side effects
Post by: sunrise on January 28, 2015, 04:18:20 pm
Hi moma
     Welcome and don't be scared. I took solvadi olysio which is pretty much the same hing except for the ledaspivir wheich disables a different chain of the RNA than the olysio. Saying that, during treatment i got very intense anxiety. I wound up taking clonapin for awhile , but was able t stop right after. It will work and help you get better, so buck up little camper. These folks here will help you get thru treatment. I am now 5 weeks out and am still undetected!  My doc thinks I am cures. So stay positive and rest when you need. ...Blessings Sunrise
Title: Re: Harvoni Side effects
Post by: anniemybaby on January 28, 2015, 04:41:22 pm
Hi mama I'm also pretty new to the forum I'm on my 2nd wk of harvoni the 1st week was easy my 2nd wk is a bit harder very low energy n very tired I pretty much rely on this forum everyone has helped me n gave me hope there is light at the end of the tunnel for all of us hang in there
Title: Re: Harvoni Side effects
Post by: Mugwump on January 28, 2015, 06:55:55 pm
Hello moma!
It is really important to take your mind off the disease. Depression feeds on itself and leads to misconceptions and fear. I suppose one would have to be a human equivalent of the Rock of Gibraltar to not feel depression being infected with this terrible disease.

Do something nice for yourself or others and do it without thinking, find time every day smile at someone or something and life becomes easier to bear. One can easily become depressed watching CNN or the daily news and become emotional over little things that should not cause the mind to worry.

Some days even before treatment I felt like throwing a shoe at the TV and regularly told telephone solicitors to go some where not very nice. I had to buy my wife some long stemmed red roses 5 weeks ago because I know I almost drove her to tears with my obsession and manic behaviour.  However since then my mind has cleared and I am not flying up to the stars or dropping down into hell like I was at first.

There is no doubt that just thinking constantly about the disease can become the cause  serious depression so one needs to step back and gain a new perspective on what is going on.

Yes even having to be on this med is depressing enough in itself, but I do not believe that Harvoni in itself is causing depression. All here are encouraged by the fact that we are finally starting see those who failed other treatments actually respond and become SVR virus free for the first time.

Do not concern yourself if your first viral load assay at week 4 does not show you to be SVR. Mine did not but did show a count less than 15 so by now I am certain that my reading will be SVR. It is common for those with long term infection like both of us to take a little while longer to clear the virus so do not be scared.

Here is a huge cyber hug and I am certain the whole gang here is sending you the same thing.

SMOOOCH
Eric
Title: Re: Harvoni Side effects
Post by: BattleTheBeast on January 28, 2015, 08:44:44 pm
I am sitting here laughing that Katie cancelled Christmas and I got a $15.00 tree 4' fake crappy tree because the thought of pulling out the big beautiful one and decorating it overwhelmed me.  I would have gone without but it would have made my Grandson sad, so it's still sitting right in front of me, I like the pretty lights and well I just don't care if it's there until the lights burn out.

Oh and the menorah is on the bookcase right next to the tree.

Maybe the end of this year we will celebrate, not sure but maybe....

@Moma - glad you jumped in and joined us. I think these medications are much harder on women than men and it's a journey to get to the end of this battle. My first 8-9 weeks I was a rashed filled basket case with blurred vision and that was the easy part, add in Insomnia and a crappy attitude and you would have ME! It's a process and this beast has been floating around for a while inside of us. I was pretty sick when I started the treatment and it's not a cold that's going to get better in a week. I have cirrhosis and it was no ez path to find my grateful butt here night and night watching the fog lift. Its going to get better, it really will!

Mel
Title: Re: Harvoni Side effects
Post by: badbradley on January 28, 2015, 09:05:40 pm
I even cancelled Christmas as I just didn't want to be bothered with it. 
You ROCK Katie!!!!
Brad
Title: Re: Harvoni Side effects
Post by: Katie on January 28, 2015, 09:32:52 pm
Mario...Guy,that would be scary. Please get in to have your blood pressure checked if this continues!  I think High BP can cause ringing in your ears and may even have something to do with panic attacks, so it's nothing to fool around with.  Did you perhaps have too much caffeine?  I am stuck with decaf and have been for years but one of the symptoms I had from caffeine was a racing heart and a shaky, confused feeling.  I've had tinnitus for a long time but it seems to have lightened up a bit with the treatment. I got it from a year long sinus infection, so figure I am stuck with it. :-\

Hope you are feeling better.

Eric, maybe you should try decaf too.  I serve it to friends and they can't even tell the difference!

Brad:  Thanks for noticing!  HA!  Last Christmas I must have baked over 30 dozen cookies in addition to fudge and many friends were disappointed with my lack of holiday cheer!

Mel:  I love that you are still enjoying the lights.  Let them SHINE sister!

((((Hugs)))) to all of you.

Katie
Title: Re: Harvoni Side effects
Post by: Mugwump on January 29, 2015, 03:40:12 am
Here is a musical hug for all those going through treatment or considering the option. It is a little better recording of Torija or "the sleeping infant" recorded with a little better gear.
https://drive.google.com/file/d/0Bxiw8Fciz7N7cVJ2OXZUUDcxOUU/view?usp=sharing

If your browser does not play the file correctly, Firefox seems to choke on it, then the file has permissions for download but you have to mouse up to the top of the page to find the download option. It took me quite a while figuring out how to create and upload to google drive but fortunately you can and it will except high bit rate mp3 files.

Hopefully my recordings will get better as I get used to the discipline of recording and ease up a bit and start to cut loose and play more freely like I do performing in a coffee house or on a gig.

I am finding keeping the mind sharp doing new things that you have always wanted to do while on treatment is really helping to kick the blues. The side effects of this drug really are minor if you let yourself steal away into something else to pass the time.

My BP is still up but it seems to fluctuate down to normal and my heart rate is actually down from what is was pre treatment. The "brain fog" is most certainly clearing and the moments of being in a haze (call it an Alzheimer interlude)  have completely dissipated.

So moma hang in there, chances are that the fear and uncertainty which are causing doubt are a result of what many here call "brain fog" and it does tend to begin to clear after about 3 weeks of pills. There is some speculation that the flood of dead virus particles in the blood stream is somehow effecting normal synaptic activity.

I have experienced a slowing of the rate at which my eyes focus and as a result more blurred vision than pre treatment.

It might be a good idea to have an eye exam post treatment to determine if there is any significant changes to vision.   

BUT and I emphasize this; the chance to clear the virus once and for all is worth the risk involved without a doubt. Even if I need new glasses at the end of this treatment that is small potatoes compared to needing a liver transplant!

eric
Title: Re: Harvoni Side effects
Post by: kate0b1 on January 29, 2015, 06:22:33 am
eric, what a great thing to listen to first thing in the am.
@katie and mel, I'm loving the posts about christmas, one of my strings of lights went out and i was ok with it (it looked rather crazy but i was like oh well).

kate
Title: Re: Harvoni Side effects
Post by: Amj1951 on January 29, 2015, 09:10:30 am
Hi ERIC! Another beautiful piece of music. thank you  :) I hope you saw my thumbs up on your oriental recipe. Was a huge hit last weekend.

We are heading out (well my friends already left) but we are going Fly Fishing for a few days in Broken Bow. Every time I think of fishing now I think of your tag line under your name : )

I need to get busy packing the jeep. I am in charge of the food and I've been procrastinating on loading up. Hate that part.. well actually I hate unpacking more  I think.

I've been trying to decide do I take all my pills with me? Just got my 2nd bottle. Leave them here? What if the house burns down.. what If the cabin gets robbed. Cant take them on the water. OMG can you imagine them falling in.......... decisions.........

Katie I love your post on Canceling Christmas!! Its so commercial now. Sometimes it feels like we ought to just sent a note out to meet at the mall with a credit card. So many have lost the REAL meaning behind it... but on the plus side.. its a whole year away! : )

MOMA... I hope you start to feel better. I agree with ERIC.. do one thing for YOU : )

I have to get a move on. Have a great rest of the week everyone. Fingers crossed I catch the Big One Martha!! (Actually I'd settle for a little bitty one : ) ha!

Meredith

PS.. Hi miss Kate : )
Title: Re: Harvoni Side effects
Post by: anniemybaby on January 29, 2015, 09:29:56 am
Going in for my first blood work today  :-[
Title: Re: Harvoni Side effects
Post by: Bob V on January 29, 2015, 11:32:37 am
Good luck Annie
Title: Re: Harvoni Side effects
Post by: anniemybaby on January 29, 2015, 12:16:41 pm
Thanks Bob I got a question none of my paperwork says anything about fasting before test n I'm unable to get a hold if my GI Dr do I need to fast prior to this test I'm planning on going around 2pm today and I've already eatn today
Title: Re: Harvoni Side effects
Post by: anniemybaby on January 29, 2015, 12:25:41 pm
Hi Mario I've noticed you were online when ya go in for blood work do I need to fast for that
Title: Re: Harvoni Side effects
Post by: HHburme on January 29, 2015, 12:30:06 pm
no need to fast for viral count.
Title: Re: Harvoni Side effects
Post by: anniemybaby on January 29, 2015, 12:45:22 pm
Thankyou
Title: Re: Harvoni Side effects
Post by: Katie on January 29, 2015, 01:14:44 pm
Here is a musical hug for all those going through treatment or considering the option. It is a little better recording of Torija or "the sleeping infant" recorded with a little better gear.
https://drive.google.com/file/d/0Bxiw8Fciz7N7cVJ2OXZUUDcxOUU/view?usp=sharing


Eric that is LOVELY and I am impressed with your sensitivity and talent!  The rest of us should be so lucky to have that tender creativity within us to set our minds at ease.  I loved it and thanks for sharing. 

Not only do you cook, but you can furnish the dinner music too.   ;)  Keep at it and glad you are feeling better.  Keep an eye on that BP. This music has to help it.

Katie
Title: Re: Harvoni Side effects
Post by: moma on January 29, 2015, 04:57:51 pm
Thank you all for your suggestions and kind words. In the 43 years living with Hep C I got to a point of feeling the virus and I were co-partners sharing a body. It was a way to live with a situation a person can do nothing about. Up until the cirrhosis was detected I had felt pretty lucky if you leave out jaundice and alopesia. Maybe the fear is not remembering what it is like to be normal. All my adult life has been being hyper-aware of my blood coming into contact with anyone.  Checking for years looking to see whatever comes out is too dark or too light! Checking the whites of eyes, the ridges of nails. Hep C has done its share of screwing with this body. The anxiousness might be the thought that this can't possibly work and I'll pay some karmic price to this virus for trying to get rid of it. Like a heart attack and alopesia after Interferon treatment. These are my thoughts today!
As suggested "Do one thing for yourself"- I called and scheduled a acupuncture appointment every week until the end of treatment.
Thanks for letting me write these thoughts out. It helps.
MoMa

 
Title: Re: Harvoni Side effects
Post by: anniemybaby on January 29, 2015, 05:13:06 pm
Moma  those words you wrote touched my soul I've often checked the whites of my eyes n can't tell you how many times I've said to husband omg does my skin look yellow when I looked in the mirror that's wat I saw my husbands like there's nothing wrong with your skin but I would c it thank you for writing such strong words it really touched me :'(
Title: Re: Harvoni Side effects
Post by: anniemybaby on January 29, 2015, 05:18:55 pm
I got my first blood work today I sat in the chair the phlabotomist said oh your hep c positive the way she said it my heart fell to my feet she seemed almost scared to touch me I just want this over with I'm tired of being infected I'm tired of being scared to be around anyone what if I cut my finger what if I have a nose bleed I just want this over with today I feel overwhelmed
Title: Re: Harvoni Side effects
Post by: Katie on January 29, 2015, 05:36:55 pm
Oh Annie, I know just how you feel as I had anxiety over the same things when I was first diagnosed.  So, if you cut your finger, you put a band aid over it.  If you have a nosebleed you tilt your head back with a Kleenex until it stops and dispose of the tissue.  You aren't going to infect anyone unless there is blood to blood contact such as blood to an open sore, or a needle puncture, or sharing personal hygiene items if you cut yourself with those.  It isn't that easy to infect someone. Health care workers have the biggest risk such as EMTs, Dentists, and yes medical lab technicians.  I actually had my blood drawn and the phlebotomy technician told me just touching my skin could be infectious....so some of them are really misinformed.  That is worrisome in itself.

I have spent the past 9+ years feeling like I was a bio-hazard but now we are on the road to recovery and we need to feel good about that.  We are being responsible and we are not a danger to anyone.  We are good and we are going to be OK.  We need to celebrate that fact and heck with those that should know better and don't.

You are going to be FINE!

Katie
Title: Re: Harvoni Side effects
Post by: anniemybaby on January 29, 2015, 05:43:03 pm
Katie i absolutely would b lost without you
Title: Re: Harvoni Side effects
Post by: hope4cure on January 29, 2015, 05:44:25 pm
Finished my first bottle today (14 days) and I don't seem to be getting as tired as I did the first week, but I still do feel sluggish about 6 or so hours after I take it. That is the only thing I notice different since starting the medication.
Title: Re: Harvoni Side effects
Post by: Wilson on January 29, 2015, 08:47:49 pm
I am doing first test at 15 days which is tomorrow no issues what so ever. Read the post about being treated poorly by laboratory or nursing staff. I have personally told staff with an ignorant attitude to stick it in their ear. I have blood work and a pint of blood taken every three weeks or so, every year for years because I have hemocromitosis. (Iron overload genetic disorder). I've had a nurse treat me rudely once.  I immediately told her to get out.  I had a doctor last year - once tell me that it was my fault for getting hepc. I lite into him and filed a formal complaint with the attending physician at the Unversity hospital.   He regretted that. I was assigned a wonderful  young lady and she has been awesome. The other jerk.Had to apoligize to me. Annie,  you don't let anyone treat you disrespectfully.  If you have this happen again, post the location, staff members name and the phone number and we can all call them and complain.  Don't ever let them get you down. Sister you deserve better.
Title: Re: Harvoni Side effects
Post by: Katie on January 29, 2015, 09:19:19 pm
Right On Wilson.  You got it right!  Thank you for that forceful statement because we don't deserve being treated badly when we are being responsible and going through treatment. 

I have had some strong discussions when they go right from Hep C to insinuating drugs.  I didn't bother with the phlebotomy technician, as I was first of all shocked and secondly felt he wasn't worth my energy at the time.  If that happened now, they would get and earful as I am much more educated myself and more proactive.  At that time I was in a state of despair and shock about the diagnosis.  We all grow and become better at sticking up for ourselves as time goes on.

Good luck with your test and here is to destroying this alien monster virus and go on to getting our life back.

Katie

Title: Re: Harvoni Side effects
Post by: BattleTheBeast on January 29, 2015, 09:39:06 pm
Way to go Wilson and I would absolutely pick up the phone and lodge a complaint for you as well.
You are a sweet precious person who has a virus and you deserve absolute respect, no one has a right to make you feel horrible especially a phlebotomist who is trained to take blood, how dare she.

Today when I had my blood drawn at the Labcorp next to my doctor's office my normal guy Werner was an absolute Gem, he has never once missed my vein, he always listens to me and he even had one of the other techs practice on him so he would know how it felt to draw my blood where he does (my wrist area). He wanted to make sure that he did it as painfree as possible and so he had them try it out on him for my next visit. I have hidden veins he says so he has to use a really small device and hit veins that easily roll. He tells me all about how he does, talks calmly to me the entire time, always smiles and is a genuinely nice person who is well trained in his job. I have even written to LabCorp to say how amazing he is.

It's such a stigma to have Hep C, I know I get it but we have each other. One day I hope to help make people understand that this could easily happen to them. That they could be walking around with it and not even know. You know that old saying "People in glass houses shouldn't throw stones" couldn't be more applicable with a hidden disease like Hep C.

We all have your back girl, just holler and we will be there to help you!

Hey Katie, SMOOCH Sister!

Mel
Title: Re: Harvoni Side effects
Post by: anniemybaby on January 29, 2015, 10:23:16 pm
I was wandering do I need to call n order my 2nd bottle of harvoni or will the pharmacy call me
Title: Re: Harvoni Side effects
Post by: Long_Haul on January 29, 2015, 10:29:00 pm
HiAnnie, I have Express Scripts/Accedo, they call me to tell me that I have prescriptions to order and give me another number to call.

Who is the pharmacy, I am sure someone on the site probably has  the same as you.

I call back to mine and place my order and schedule the delivery, usually arounf a week before my last Harvoni.

Hope that helps,

AL
Title: Re: Harvoni Side effects
Post by: Katie on January 29, 2015, 11:05:07 pm
I pick mine up at my local pharmacy and always call it in to them a week before as per the instructions from the pharmacist.  I guess it depends on how your medication is distributed, but I would definitely call to make sure.

Hope you are feeling better Annie.  This whole process is overwhelming and having each other is so beneficial!

Katie
Title: Re: Harvoni Side effects
Post by: anniemybaby on January 29, 2015, 11:11:17 pm
Thank you my meds come ups there are no pharmacy's in my area that carry harvoni
Title: Re: Harvoni Side effects
Post by: Katie on January 29, 2015, 11:16:03 pm
Who lined the meds up for you the first time?  I would think they would let you know what you have to do as they take awhile to get.  Hopefully you have a number to call.

It's always something to deal with and by the time we have it down pat we'll be done and cured.  That's how life seems to be!

Katie
Title: Re: Harvoni Side effects
Post by: Jmayer1969 on January 30, 2015, 03:10:36 am
I took my second dose of Harvoni today toward my 12 week treatment.  Not feeling any different other than backache.  I was searching for food plan while on this treatment.  Any pointers?
Thanks
Jan in Jax,FL
Title: Re: Harvoni Side effects
Post by: Lynn K on January 30, 2015, 03:42:50 am
Hi Annie

Usually the bottle has the number to call for refills with your prescription number on the label along with your name
Title: Re: Harvoni Side effects
Post by: Mugwump on January 30, 2015, 03:43:03 am
I took my second dose of Harvoni today toward my 12 week treatment.  Not feeling any different other than backache.  I was searching for food plan while on this treatment.  Any pointers?
Thanks
Jan in Jax,FL
No special diet is called for according to the literature,  other than making sure you are well hydrated. I have found that if I do not eat within 6 hours of taking the med then there is a tendency to feel queezy in the gut. That is about it. 

There is a strong recommendation directly from Gilead to avoid the use of antacids within 4 hours before and after taking the pill as this can cause the ingredients in Harvoni to bond to the antacid and not be metabolized in the liver essentially wasting the med.

To my way of thinking try to avoid large quantities of saturated fats that wind up causing the liver to work overtime and do throw the blood balance out of wack. That being said the occasional Big Mick or Slurpie is not going to make much of a difference.

Watch the movie Supersize Me, http://en.wikipedia.org/wiki/Super_Size_Me it is a good laugh but does have some actual clinical facts about how terrible the over consumption of large quantities of sugar, fats and refined carbohydrates can and does quickly effect how well your liver can do the job it was meant to do.

In short how well the liver metabolizes Harvoni is really important. A normal balanced diet seems to be the best call regardless of whether or not you tend to attack vegetables or critters or a combo of both. Of course if you are an insectivore and have a penchant for something like chocolate coated ants or meal worms then you are on your own!

Kick the virus to hell where it belongs and best wishes

Eric
Title: Re: Harvoni Side effects
Post by: Lynn K on January 30, 2015, 03:56:23 am
Just to add to avoid use of antacids within 4 hours

If you take a PPI like Prilosec or Nexium the rule is at the same time as Harvoni on an empty stomach.

If you take famotidine i.e. Pepcid or other histamine-2 blockers you take those at the same time as Harvoni and 12 hours after Harvoni at a dose that does not exceed doses comparable to famotidine 40 mg twice daily.
Title: Re: Harvoni Side effects
Post by: smarsman on January 30, 2015, 08:32:53 am
I am on day 5 and other than some extremely mild queasiness which I am not even sure is attributable to the Harvoni, I feel fine with one exception which I have not read about:  I woke up yesterday morning and experienced some imbalance walking to the bathroom.  It dissipated over a 30-45 minute time frame.  And this morning when I woke up although it was a different quality and intensity, there was some imbalance and slight dizziness. 

Has anyone heard about a lack of balance associated with Harvoni?
Title: Re: Harvoni Side effects
Post by: anniemybaby on January 30, 2015, 12:48:25 pm
Hi smarsman I've been experiencing a lot of queasiness as for the dizzy spells I feel somewhat that way but I'm extremely tired and fatigued I'm pretty new to the whole hepatitis thing and don't know near as what other members know good luck
Title: Re: Harvoni Side effects
Post by: moma on January 30, 2015, 08:54:34 pm
Total dizziness. This is day 14 on Harvoni. Feeling a little itchy too. Mostly just tired.
Last night was one of those insomnia times. Like I've said before, I'm not sure if it's the medicine or the virus. I have had these low periods of side effects for a couple of decades just from Hep C! It still doesn't seem possible we can be ridding our bodies of this virus and not having worse side effects!? (not complaining) Especially compared to Interferon, well there is no comparison!
"Do one thing a day" Watched a Netflick movie on my laptop, laying in bed!
Annie your reply was so sweet. I was hoping to share some soul feelings here. Positivity is always a necessity. But we need to let ourselves feel and admit what we think of as 'normal', involves feelings of sadness, fear, separation and anger sometimes. I loved what was said here "I feel contaminated". When my grandson fell one day scrapping his elbow, the first thing I thought was "do I have an open cut anywhere on my hands or arms" before I picked him up. Man, I went through all those feelings in one second. And that is my 'normal' response to most life situations like that.
There is physiological healing along with physical healing needed on this journey.
I want all of me in the same place when the trip is over!   
It will be hard not to drink beer on Super Bowl Sunday!
MoMa

Title: Re: Harvoni Side effects
Post by: Lynn K on January 30, 2015, 09:49:09 pm
Really not so hard to not drink beer if you consider the consequences.

I haven't been able to drink beer or anything else with alcohol since I was dx with cirrhosis Jan 08 not even a non A beer as there is a small alcohol content. But I am still here and giving up beer is a small price to pay for being alive
Title: Re: Harvoni Side effects
Post by: Katie on January 30, 2015, 10:42:14 pm
I used to really enjoy a ice cold beer on a hot day after working in the sun or with pizza and on occasion enjoyed wine with a nice dinner but it started making me feel really rotten so I quit prior to being diagnosed, thinking it was just temporary and haven't had a drop since then in 2004.

I haven't missed it and found lemonade or a fragrant tea does the trick and really tastes better.  One must listen to our bodies as it tells us what is good or bad, sometimes.

Right now I crave sugar, but I try not to listen as I know better.  HA!

Katie
Title: Re: Harvoni Side effects
Post by: Lynn K on January 30, 2015, 10:50:02 pm
OH now you say that as I eat my last cookie from a small bag of Famous Amos

Thanks!
Title: Re: Harvoni Side effects
Post by: Katie on January 30, 2015, 10:59:50 pm
I don't always listen, Lynn.  We can't deprive ourselves of everything, all the time!  Alcohol, no big deal.  Deserts on the other hand.....    ::)
Title: Re: Harvoni Side effects
Post by: Mugwump on January 30, 2015, 11:13:46 pm
OH now you say that as I eat my last cookie from a small bag of Famous Amos

Thanks!
The way I just made myself feel better is to buy pack of Newman O's cookies and because a portion of the profit goes to charity I consider this a tax on my sugar cravings. LOL

But man do those cookies ever taste good, an old fashion real vanilla bean based filling done in a crisp old school sugar cookie biscuit made with real butter! Worth every calorie and insult when balanced off with a good cup of dark roast coffee with real creamer. Call it a Friday present for being a good boy.

Who knows during the super bowl I might even have some poutine with kickass coffee just for old times sake. Damn the calories and torpedoes, full speed ahead I say!

Eric
Title: Re: Harvoni Side effects
Post by: anniemybaby on January 31, 2015, 09:03:42 am
Well its Saturday I'm alittle over 2 wks on harvoni waiting patiently for my 2 wk test result not really having anymore side effects just really tired and the 10 degree weather doesn't help everyone have a happy saturday ;)
Title: Re: Harvoni Side effects
Post by: smarsman on January 31, 2015, 10:27:55 am
Dizziness versus imbalance.  I experience dizziness with a spinning feeling.  This is the third night in a row that when I got up to pee and when I woke up in the morning, that I was wobbley, almost staggering for about 10-15 minutes.  I would not name this dizziness but maybe that's what is being called that by others.  How do you experience your "dizziness"?
Title: Re: Harvoni Side effects
Post by: moma on January 31, 2015, 03:59:27 pm
Woke up to hives on my neck, face and around my belly. Called the help line to ask about taking a antihystimine. No interaction with Harvoni.
Annie I'll trade you weather. I'm in Tahoe and we are walking around in flip flops! We need snow and rain so bad.
Moma   
Title: Re: Harvoni Side effects
Post by: anniemybaby on January 31, 2015, 04:49:35 pm
Moma i hope your feeling better n ohhhh flip flops I almost forget wat they look like have a good sat night I'm on the couch snuggled up with my furbabys hubby went out for a few drinks I never was a big drinker but I loved my weekends of wine n dancing I haven't been out in forever and my GI Dr told me a glass of wine every once in awhile won't hurt but I choose not to don't want it to effect my treatment as for diets I'm on none I eat wat I want n try n drink lots of water
Title: Re: Harvoni Side effects
Post by: Katie on January 31, 2015, 05:00:28 pm
Sounds like you are doing everything right Annie.  Stay warm and keep snuggling.  It's good for the soul.

I am sorry to hear that Moma!  How miserable.  Hope you get some relief!  I love the Tahoe area.  It is beautiful but strange you don't have snow.  Neither do we.  SSE Alaska has skipped winter this year!

I miss my flip flops too!  I live in a rain forest and love the rain but the X-traTuff rubber rain boots are SSE Alaska's tennis shoes!  Ha.  I've seen people show up to concerts, social events and even weddings wearing them because of the rain and no one cares as it makes perfect sense.  Have a wonderful weekend!

Katie
Title: Re: Harvoni Side effects
Post by: anniemybaby on January 31, 2015, 05:08:23 pm
I live in pa n getting more snow tomorrow night into Monday ugh  awww Katie rain forests just remind me of the tropics n I love that
Title: Re: Harvoni Side effects
Post by: Katie on January 31, 2015, 05:19:08 pm
Cool for tropics, but milder in the winter than back east.  This year and even last year have broken records for warm temps.  Our flora and fauna are beautiful.  Love it here.  Clean air, clean water, wonderful woods and muskeg with ferns and moss and seafood galore.  Some people have a real issue with all of the rain (over 150-200 inches a year) but I love the dampness and the mystic fog.  Very calming and energizing.
Title: Re: Harvoni Side effects
Post by: kate0b1 on January 31, 2015, 06:50:58 pm
Katie, I love the rain it's one of my favorite things, and I would go anywhere right now to wear flip flops, they are my second favorite thing lol more snow this w/e here did I mention I HATE SNOW :(
Title: Re: Harvoni Side effects
Post by: Katie on January 31, 2015, 07:01:07 pm
Hi Kate:  I used to love the snow, but with my mobility issues, skipping it this year was so much easier.  They are forecasting snow this next week but it won't last as the highs will get in the upper 30's to mid 40's and then it will rain.  It has been such a weird winter.  Even farther north, hardly any snow and that is strange for Alaska. Our poor polar bears.  Even here, we count on snow melt in the the higher elevations in spring for our out-migrating salmon fry, so we'll see how that goes.  Everything is intertwined and it is a delicate balance that we are messing with.  <BIG SIGH>
Title: Re: Harvoni Side effects
Post by: mario555 on January 31, 2015, 08:12:08 pm
Katie. I wish I could send you some of our snow! I live in ''northern New Brunswick in Canada and we must have close to 10 feet of snow where it hits the ocean shore. If you look north from where I live, you can see Santa Clauss!!!! At least with your newfound health, you'll be able to undertake some new challenges like ''save the north'' or something else rather than being like me and obsessing with Hep C.
I've had the disease for so long and my health status was falling so fast in the last few years that I was beginning to precipitate the end! Like a very slow suicide! I was eating bad, no exercise, a beer here and there and it was getting worse, etc... 
Since I've started this medication, my food choices have improved tremendously and I'm gaining a new appreciation for life.  I've never been fat but since starting the treatment, I've lost 5 pounds and I had none to lose! Its hard to gain weight with carrots!!!!
 To be really truthful, I've had it with the medication; I'm on my 12 th week and I have 12 more to go! My body is smelling like chemicals and I feel its coming out of my ears (who keep ringing anyway!) What keeps me going? The alternative! Even if the medication makes me fell so, so, the thought of dying if I don't finish my treatment keeps me going.  Although the treatment is 90% better than Int-Riba, I think my aging body is getting more sensible to any chemicals I put in.  So, this is my big shot at getting cured!
Also, for the ones fretting about food and the effect it could have on the treatment, don't worry. The medication does nothing else than look for Hep C viruses and attaches itself to it to stop the replication. It doesn't need you to do it, that's all what it does; hunt for hep C viruses! The medication has nothing to do with Interferon that used your body defenses to fight the disease. This medication is not alive, it's a chemical that attaches itself to the virus and sticks to it no matter what. It has absolutely no effect on cold viruses or any other viruses, only an attraction for a specific part of the Hep C virus (which is good or else it could attach itself to let say, heart, eyes, etc... and could prevent replication...). We are the pionners for a new way of curing many diseases through the same type of approach!
Good luck to everyone!
Title: Re: Harvoni Side effects
Post by: BattleTheBeast on January 31, 2015, 08:46:17 pm
Hi Moma,

I had a huge allergic reaction to Olysio when I was on S/O and the ID doctor said Benedryl was fine, he also gave me some prescription as well but I can't remember the name.

@Katie, I always wanted to visit Alaska but I don't think I'd like to live with that much rain. I need sunshine but I'd love to get in on some of that fresh salmon and other seafood! It's ok here but not like it is up in Maine or Mario's neck of the woods.  I remember about 10 or so years ago being up in the Tacoma area for work and going over a smaller bridge down the road from the office and seeing the salmon run, It's an incredible site to see in person.

@Mario - Hang in there! I am on a possible 32 weeks because of the 8 weeks on S/O before I started the 24 of Harvoni. It's a dang marathon! Just cracked open bottle number 3 of Harvoni so I have been on treatment altogether for 16 weeks so like you I am halfway there. Someday it will be over but I will deal with whatever I have to and rid myself of this menace that's taking the spunk out of me. I want my spunk back dangit!!

@Annie, Kate - we will all be watching the weather Sunday night, last check it's moving north so we might get lucky again like last week.

Time to put the ice bag back in the freezer and switch to the heat and massager...

Mel

Title: Re: Harvoni Side effects
Post by: Katie on January 31, 2015, 09:08:50 pm
Hi Mario!  I am sorry you've had such a rough time.  Being sick as the norm really sucks but now we have the opportunity to start feeling good and maybe enjoy our life to it's fullest.  I really started feeling crummy and as soon as I started this treatment improved by at least 75%, so I am happy.

I have had tinnitus for years, probably due to a year long sinus infection.  The first 2 days on treatment it increased 100% and I thought 12 weeks of this is going to be terrible.  It was a loud static roar and I never had it like that before.  Then miraculously I had two days of total silence.  First time in probably 12 years and I got excited, but it came back to the low "normal" level.  It still fluctuate some but it's about the same.  Go figure?  Hopefully your ringing will disappear as it is really irritating and I miss the silence of the woods, but I think I am stuck with it.

I just started my third and final bottle of my 12 week treatment and for about the last week noticed my urine having a very strong odor.  I'm sure it is the build up of the medication as it has been that way even when I drink all my water and it's diluted completely.  I just look at it as an indication that the medicine is working!  Those little buggers are dying and they stink!  HA!

On your offer for sending me snow...no thank you.  I'll be selfish for now and keep our mild temperatures and rain.  We had so much that we had a historic flooding in our town.  The creek in town actually flooded to the point of people near the creek being evacuated.  That has never happened before.  Over 10 inches of rain in 2 days and the ground was already saturated and then we had a 19.2 high tide and it flooded.  It was amazing as we handle our rain very well here!

Take care Mario and keep your spirits up because a new beginning is just around the corner.

Katie
Title: Re: Harvoni Side effects
Post by: mario555 on January 31, 2015, 10:01:14 pm
hi catie. Same with me, the ringing in my ear. It varies from 2 to 9 out of ten. I even had few days where it was 0! What a relief...  As for my urine, same thing, it smells like its 3 days old although I drink 3 quarts of water plus coffee and other liquids.
I'm somewhat strongheaded so it keeps me going (my wife would say very stubborn...). She's an angel having gone with me through all this disease. It sure changed our marital behaviour to say the least! She got tested 4-5 times since I've known I had the disease and she's still not convinced she doesn't have hep c! She eats crappy food at night and wonders why she has trouble sleeping and why her digestion is so poor. She's almost convinced she has a ''ghost hep c'' lurking somewhere!!!
For the first time since 1992, I'm less afraid to give this disease to people because of my UND after 4 weeks. That's somewhat of a relief. I sure hope my sex drive will start to pick up from the pits where it was! Poor wify!
As for energy, it is definitely up by a large margin. It's only my 'get up and get going' that is slow lately. I surely laughed when I saw comments about Christmas trees and stuff. I put the outdoor lights on the morning of the 24 and took them down on the 26! Let me tell you there were few strings attached to the house. I showed her the comments from people on this forum to ''prove to her' I wasn't alone!
It's kind of funny to think I was all alone in my neck of the woods with this disease and since joining this forum, I realize we have lots in common in sickness and in courage!
Good luck and God bless!
Mario
Title: Re: Harvoni Side effects
Post by: kate0b1 on February 01, 2015, 06:59:52 am
OMG can we talk about the pee smell, i thought i was the only one and was just weird. I feel like when you eat asparagus (we eat a lot of it). Im going with what katie says and the virus is dying and it smells lol.

and good morning everyone

kate
Title: Re: Harvoni Side effects
Post by: mario555 on February 01, 2015, 09:36:24 am
Aspargus, coliflower, turnip and similar vegetables will worsen the smell of sweat, piss, etc! It's wonderful for your health but it is smelly. Garlic, onions, indian spices and others will also do that.
Eating sweet fruits will relieve the smell a bit but it is more fatening. 
Title: Re: Harvoni Side effects
Post by: Lynn K on February 01, 2015, 04:54:37 pm
Tinnitus had it for years always figured it was from a lifetime of working in machine shops or as a mechanic. Would be a pleasant surprise to have it be from hep c and that it could stop at some point.

I am pretty good at  ignoring it but it is always there. The only time I don't hear it is at work because on the general noise in the shop.
Title: Re: Harvoni Side effects
Post by: Katie on February 01, 2015, 05:16:47 pm
That is interesting Lynn.  I didn't realize so many with Hep C have tinnitus and actually when I started with the fatigue and other symptoms of Hep C, before my diagnosis,is when my ear ringing started.  I assumed it was the sinus infection, but maybe not!  Those 2 days where I was free of it were so incredible and made me realize how irritating, although not debilitating, it is.  The silence was golden and I would absolutely love to have it go away permanently.  I won't get my hopes up on that but it certainly would be a bonus.

Any body else on this forum experiencing this?

Another new thing for me lately is a bit of vertigo.  A light headed, minor spinning, especially if I look up.  I now have to be REALLY careful on a ladder or step stool.  Yesterday I was on a 3 step ladder getting my closet purged and almost fell backwards.  The last thing I need is a fall, so I am going to be very careful.

Interesting how all these little things pop up.  Harvoni related?  Who knows.

Whatever it is, getting rid of this beast is what we need to focus on and all will be good in the end.

Katie
Title: Re: Harvoni Side effects
Post by: Katie on February 01, 2015, 05:29:54 pm
Aspargus, coliflower, turnip and similar vegetables will worsen the smell of sweat, piss, etc! It's wonderful for your health but it is smelly. Garlic, onions, indian spices and others will also do that.
Eating sweet fruits will relieve the smell a bit but it is more fatening.

Hey Mario.  It doesn't matter what I eat but when I first noticed it, my first thought was...hmmmm smells like I ate asparagus only stronger, but I didn't.  It has been a  week since it started to be noticeable and it always smells strong to where it is rather disgusting.  HA!  Being a biologist, we tend to notice things like that and don't have a problem talking about it.  I tell people I am a poop-ologist as I am always interested in scat, whether it is my dog, or cat or bear or deer!  They just tell me I am sick.  All in fun.  So I stick with my theory, that the little buggers are dying and they smell!  Even Kate agrees with me!  <grin>

Enjoy your day and make some snow angels for me!

Katie
Title: Re: Harvoni Side effects
Post by: BattleTheBeast on February 01, 2015, 06:02:33 pm
Well now I have something else to look forward to, stink asparagus pee!!

I'd say I'm looking forward to it but I am kinda NOT!

Thanks guys!!

Mel
Title: Re: Harvoni Side effects
Post by: kate0b1 on February 01, 2015, 06:06:21 pm
lol Mel, katie says its just the virus dying, so I'm going with that but I'm hear to tell you, I'm just happy someone else has this happing  ;)

kate
Title: Re: Harvoni Side effects
Post by: Katie on February 01, 2015, 06:21:34 pm
 :)  ;)  :D  ;D  :o  ???  :o  8)  ::)  :P  :-X  :-\  :-*  ;D  ;D  :)

I'm still giggling!
Title: Re: Harvoni Side effects
Post by: mario555 on February 01, 2015, 06:31:04 pm
Actually, watching this discussion I'm more laughing out loud than anything else! Happy to see I'm not the only one loosing my mind
  ;D   You guys are funny tonight!
Title: Re: Harvoni Side effects
Post by: Tommync11 on February 01, 2015, 06:36:01 pm
Hey everyone,

Day two of Harvoni slight headaches,stomach growling,hungry,fatigue,funny taste in mouth. all very mild so far. I am not a drinker, non smoker, no drugs,athletic,( well mens slow pitch softball  )lol. so i hope this is what to expect through the duration.i have been reading this thread for the last couple days thought i would chime in and keep ya posted on my journey the next 12 weeks .

Tom 8)
Title: Re: Harvoni Side effects
Post by: Katie on February 01, 2015, 06:45:02 pm
Welcome aboard Tom.  Hope your Harvoni journey is an easy one!  I had a metallic taste just for the first couple days and then it went away and my other symptoms faded fast.  Just some minor issues that come and go but nothing I can't handle, in fact I feel better with this treatment than I did before starting.  In fact I feel 10 years younger as my fatigue had really taken over and my energy and sleeplessness was horrible.  All in all, this has been a blessing, in more ways than one.

You found the right place to be and whatever questions you may have, someone on this forum will share their knowledge and experiences with you.  There is a lot of support in this amazing group.

Katie
Title: Re: Harvoni Side effects
Post by: anniemybaby on February 01, 2015, 06:55:22 pm
I'm so glad I checked out this thread tonite I get alot if tinnitus infections and as for the strong pee yep lol
Title: Re: Harvoni Side effects
Post by: Wilson on February 01, 2015, 06:58:41 pm
Just went back and read the last three abstracts/studies for Having. I don't see anything about urine odors, ringing in the ears, or blood pressure issues. I did not read anything that would indicate dizziness either.  My guess is that these must be some isolated issues with individuals.  Based on the studies it appears that side effects could possibly be caused by stress.  My physician was one of the authors and study managers  of 2 studies in 2014. I had ask her if she could define the 14% with some adverse effects. She said that no patient in either study had any moderate to severe side effects.  Less than 3% had head ache issues.
Title: Re: Harvoni Side effects
Post by: anniemybaby on February 01, 2015, 07:24:21 pm
Thanks Wilson I think the strong urine has to do with our diets lots n lots of veggies its kinda like the saying you r wat u eat lol
Title: Re: Harvoni Side effects
Post by: SunIsOut on February 01, 2015, 08:18:50 pm
Hello Friends,
I was diagnosed around 2000.  I had a biopsy done back then but was Genotype 1a and they did not treat.

I had a transjugular biopsy in 2012 because my platelets were too low for a normal method. I am F4 and Platelets around 50 with plus high iron. I did phlebotomy for about a year.  I could not do regular treatments do to the above reasons.

I changed my diet about 12 years ago knocking out any ingredient that I could not pronounce and last 8 years with as many organic foods that I can.  I exercise and went to the gym today for the bike ride, machines and the olympic pool laps.

I am 59 YoA and feel great.  My doctor prescribed Harvoni on December 30th, the insurance company declined, the doctors are doing the appeal and I hope to know this week plus results on viral load and latest MRI are forthcoming.

I hope this gets approved soon and I can get started. I have waited a long time for this day.  Glad I found this forum.
Title: Re: Harvoni Side effects
Post by: anniemybaby on February 01, 2015, 08:36:56 pm
Welcome sunisout I just finished up my 2nd week on harvoni n feeling OK not 100% but I'm hoping to get there good luck with getting your script I've learned a lot from this forum they are all life savers :)
Title: Re: Harvoni Side effects
Post by: anniemybaby on February 01, 2015, 08:47:41 pm
I'm gonna try working tomorrow I've been so tired but the more I  continue to lay on the couch the worse I'm feeling its starting to effect my relationship with hubby I just don't wanna do or go nowhere maybe depression is setting in I don't know
Title: Re: Harvoni Side effects
Post by: SunIsOut on February 01, 2015, 08:53:50 pm
I'm gonna try working tomorrow I've been so tired but the more I  continue to lay on the couch the worse I'm feeling its starting to effect my relationship with hubby I just don't wanna do or go nowhere maybe depression is setting in I don't know

I love the swimming and it is my exercise dessert!  I joined the college gym for about $90 a semester and if that type of resource nearby I highly recommend it.  Hang in there we will get though this!  :)
Title: Re: Harvoni Side effects
Post by: Katie on February 01, 2015, 09:12:42 pm
Hi Sunisout...My insurance didn't deny it but wouldn't accept it until I had current blood work done for VL and an ultrasound.  My doctor wrote a letter as well and it came through without a hitch, so hopefully yours will be the same.

I am 1a, was diagnosed about 9 years ago from an unrelated checkup and I have no idea where I picked HepC up or how long I have had it.  I had a very physically demanding job for much of my adult life but due to joint issues went into the office for the last 10 years and have been retired for almost 2 years.  About 12 years ago I lost my spark and as the years passed by I felt worse and worse, so the diagnosis made sense to me.  I really struggled the last two so retirement has been very beneficial and I have been remodeling my house and doing things I've always planned on doing but never had time.  I am doing great on the treatment and feel so much better since starting it.

So after all of that, I welcome you aboard and want to let you know joining this forum was the best thing I could have done.  It is good to be able to talk to people who are in a similar situation and the information and support is great.

Harvoni is a miracle drug and I am so grateful the breakthrough happened in time for all of us.  We are on the cutting edge of eradicating this virus and I find that exciting!

Good luck to you, and I hope you have good news shortly!  Keep the faith!

Katie
Title: Re: Harvoni Side effects
Post by: BattleTheBeast on February 02, 2015, 08:14:51 am
Hi Sunisout,

Welcome and a great name! The Sun does come out when you get on this medication and it is a miracle to feel the fog lift. The forum is full of many supportive people and I have found it to be my place to find people who can relate to this road I am on.

I only found I had Hep C (1a) a few months ago and am so grateful for these new treatments. Today I am undetected and on TX with Harvoni.  Hopefully in a few short week you will be able to say the same thing with whatever medication you and your doctor decide is best for you.

Take care,

Mel
Title: Re: Harvoni Side effects
Post by: Amj1951 on February 02, 2015, 09:25:30 am
Just went back and read the last three abstracts/studies for Having. I don't see anything about urine odors, ringing in the ears, or blood pressure issues. I did not read anything that would indicate dizziness either.  My guess is that these must be some isolated issues with individuals.  Based on the studies it appears that side effects could possibly be caused by stress.  My physician was one of the authors and study managers  of 2 studies in 2014. I had ask her if she could define the 14% with some adverse effects. She said that no patient in either study had any moderate to severe side effects.  Less than 3% had head ache issues.

Hi Wilson, on the strong urine, are you drinking a lot of water? Its suggested to drink half your weight in ounces. EX.. if you weigh 150 to drink 75 ounces of water/day. (I know that can vary if you have other issues besides the Hep C. You might ask your doctor about it if so.)

Certain vegetables can cause the strong odor like.. asparagus. You might write down what you've been eating and google to see if they cause a odor.

I have low blood pressure, but mine has gone up to normal or even like 124/82 since being on the Harvoni, so I personally think it affects it, but I don't know that for a fact. Always ask the doctor since they are the ones making the big bucks : )

Meredith
Title: Re: Harvoni Side effects
Post by: pmm on February 02, 2015, 03:58:48 pm
Hello All,

First time posting but I have been looking for awhile. I started Harvoni on 12/27/14. My doctor requested 12 weeks but I was only approved for 8.  My doctor said that was ok because she thought 8 weeks was enough for me. She said she has been requesting 12 just to be sure to get 8 approved.

I had zero side effects until this past Saturday. I woke up feeling dizzy/lightheaded with a headache and just generally crummy. My elderly neighbor came over for a visit and I told her how I was feeling and she said that sounds just like me when I forget my blood pressure meds. I checked my blood pressure and it was very high 149/107 which freaked me out since it is normally low-normal. I called my doctor this morning and she said to go to urgent care and get it checked there (I haven't gone yet today). I have a regular appointment with her tomorrow and she will let me know the results of my 4 week blood work (which includes viral load) fingers crossed!

I guess I can tolerate this for 3 more weeks to get rid of the HepC.

Pattie
Title: Re: Harvoni Side effects
Post by: art1951 on February 02, 2015, 04:05:55 pm
Just went back and read the last three abstracts/studies for Having. I don't see anything about urine odors, ringing in the ears, or blood pressure issues. I did not read anything that would indicate dizziness either.  My guess is that these must be some isolated issues with individuals.  Based on the studies it appears that side effects could possibly be caused by stress.  My physician was one of the authors and study managers  of 2 studies in 2014. I had ask her if she could define the 14% with some adverse effects. She said that no patient in either study had any moderate to severe side effects.  Less than 3% had head ache issues.

I am not sure why but my nurse would always ask if my urine had a strong odor.  It must be an indicator of something.  I would mention it to your doctor just to make sure.

Art
Title: Re: Harvoni Side effects
Post by: Katie on February 02, 2015, 04:21:06 pm
I know dark urine is a concern because of jaundice and liver issues, but the doctor has never asked me about odor.  I think we are just getting rid of toxins and our systems are saturated with the drugs at this point.  (9 of 12 weeks)
Title: Re: Harvoni Side effects
Post by: mario555 on February 02, 2015, 05:04:38 pm
To pmm. For your blood pressure you will find many in here who dealt with this sudden problem. It is not mentioned as a side effect in the product. We also had a discussion wondering if these symptoms where random or a notable side effects.
I have never had high blood pressure in my life. In the first 2 months it went to 150/120. Usually I am a bit on the low side. It has since come down to 130/100. I'm not doing anything about it because my belief is that this high blood pressure is due to the medication and I only have to endure it another 12 weeks. To me it's a worry but my hep c cure is more important.
Obviously, go see your doctor but keep in mind you have a short lived situation and the aggressiveness of her treatments should be tempered by that fact.
Title: Re: Harvoni Side effects
Post by: BattleTheBeast on February 02, 2015, 05:56:11 pm
I know dark urine is a concern because of jaundice and liver issues, but the doctor has never asked me about odor.  I think we are just getting rid of toxins and our systems are saturated with the drugs at this point.  (9 of 12 weeks)

Ya think Katie? I am now at week 17 between the S/O combo and the Harvoni and mine is very clear. Actually it's clearer than it's been for a long time. Maybe because it was darker for so long that I didn't notice the big change until it got really clear along the way.  I do drink a ton of water and not much of anything else. Coffee in the AM and try to limit to 1 big cup most days (10 ounces) from my Keurig brewer, maybe a Gatorade or Pineapple Juice once a week, then the occasional Hot Cocoa when I need a chocolate fix! I have also been working on smoothie recipes but to me they are almost a meal so I don't think of them as a drink.  Trying to so a smoothie for breakfast since I was never a big breakfast eater.

Honestly it probably happened and I was so busy with everything else, like the evil rash and itch I didn't notice!

Mel
Title: Re: Harvoni Side effects
Post by: Mugwump on February 02, 2015, 07:40:49 pm
Katie if you really want to mess with the lab tech try half a jar of pickled beets about 12 hours before a urine sample test. I did that a quite few years back to my doctor when I had a to have an updated professional emergency drivers exam done for a job out in the bush for which the oil company insisted on a screening for drugs, diabetes and alcohol. His assistant almost had kittens on the spot. I got reamed out by the doc though. But passed the test with bright red pee no problem. Next time I might try asparagus.

I don't think Harvoni is causing me to have unusually dark urine but I know if I exercise hard and don't drink enough water or hold back too long it gets darker than usual. So yes most likely Harvoni is a little bit of strain on the human pipes and water reservoir system. I would only be concerned if you start feeling pain in the back associated with the kidney region and it is not relieved by passing urine. I felt a little obvious kidney and bladder pain at times but they have all gone now that I am well into the 24 week stretch.
Title: Re: Harvoni Side effects
Post by: anniemybaby on February 02, 2015, 08:15:23 pm
I've finally got used to drinking tons of water n Im starting to feel totally different going on wk 3 of harvoni things are getting better decided  a complete leave fr my job till done with treatment I need to focus on my health I'm looking for a good healthy cookbook I wanna eat healthy but it gets really expensive so I'm looking for n inexpensive healthy way if eating
Title: Re: Harvoni Side effects
Post by: Katie on February 02, 2015, 08:43:15 pm
I was only commenting on Art's comment about asking if the urine has an odor.  I do not, nor ever had dark urine as my liver fortunately is in good shape.  It's just the past week it is noticeably strong smelling and I am not concerned about it and would not expect it to be listed as a side effect in the trials.  It is just one of those interesting, biological functions that seemed to have changed.

Mario, you are funny.  I love beets, especially fresh out of the garden and have always avoided them prior to a physical.

Annie, I am so glad to hear you are feeling better.  The water really does help but I think our systems adjust to the medication as well.  I have noticed some differences lately.  Nothing serious but I am a bit more tired even after a good sleep and I am a bit light headed with some vertigo.  I contribute this to being on the treatment for 2 months and all that healing certainly has an effect as well.  My system has been working hard to clear this all out and I am sure my immune system and liver is stepping up to cleanse all the toxins in addition to the virus.

All is good and I have a little over 3 weeks to go on Harvoni and am looking forward to the time to continue to move by quickly as the 12 week test after treatment will try my patience.  By that time spring will be rapidly approaching, my remodel will be completed (new floors in the back rooms next week) and I will be busy planting seeds and flowers.  That is always rejuvenating!

Enjoy your evening everyone and have a good rest.  It is so good to be part of this platoon fighting the dragon!

Katie
Title: Re: Harvoni Side effects
Post by: Mugwump on February 02, 2015, 09:01:14 pm
I've finally got used to drinking tons of water n Im starting to feel totally different going on wk 3 of harvoni things are getting better decided  a complete leave fr my job till done with treatment I need to focus on my health I'm looking for a good healthy cookbook I wanna eat healthy but it gets really expensive so I'm looking for n inexpensive healthy way if eating
For one try East Indian cuisine. I make naan bread which are really easy and you can use inexpensive pea and bean based flours in combination with whole wheat roti flour. Contrary to popular belief Indian Cuisine is not all spicy foods! Dal is a staple and can be made with any number of inexpensive beans. This is one of my favourite style soups or dal http://www.simplyrecipes.com/recipes/red_lentil_dal/ this is similar to what I make and the spices are only a question of taste and can range from inexpensive to expensive. But by and large if make your own spices the price is at least 70% less than pre made spice. I try to eat a meat free meal as often as possible and buy red and green lentils and split yellow, green peas and always have them available to make a quick side dish. Mustard greens can be used in soups or added to a dish hot bean dish with or without yogurt on top.   

It is well worth finding amd using a cheap coffee grinder or old school hand grinder, you will find that commercial processed spices are inferior to what you can do on your own for a fraction of the cost and you will use less because it will be fresh.

Chinese food and technique is also good on the wallet if done sensibly.

A large part of great cuisine is not wasting and we in the West are terrible in the way we waste food. The original French methods of creating mirepoix was the use of the base and leaves  the vegetables cleaned of all dirt. Not what it has become today in big time restaurants who waste more food than they serve!  Your carrot and onion tops are browned slightly then into the stock pot. I cringe when is see someone discard the leaves of a head of celery or use nothing but peeled potatoes.  I assure you that if you adopt an old school attitude toward your cooking the costs will drop almost overnight.

Here is a little known fact, during the second world war when the Nazis started using slave labour from the concentration camps they fed the untermensch and Jewish slaves with with the scraps from the army camp commissary kitchens. The doctors could not understand why they were actually not starving until they realized that they were actually feeding them the best part of the food. So they change that policy to deliberately starve the slaves. A sickening fact about human history and an important lesson that we seem to forget about nutrition and diet!

 
Title: Re: Harvoni Side effects
Post by: anniemybaby on February 02, 2015, 09:18:41 pm
Wow mugwomp you sure know your foods very impressive n I'll def try east Indian cuisine thanks for the link I always heard Indian food was good I've never tried it and there's no Indian restaurants in my area I hope I can find those diff ingredients thank you so much and Katie I hope you feel better I absolutely look forward to your posts everyday you've made a big difference on my outlook I don't know where I'd b without this forum I learn something new every day thank you to all :)
Title: Re: Harvoni Side effects
Post by: Katie on February 02, 2015, 09:21:37 pm
I've finally got used to drinking tons of water n Im starting to feel totally different going on wk 3 of harvoni things are getting better decided  a complete leave fr my job till done with treatment I need to focus on my health I'm looking for a good healthy cookbook I wanna eat healthy but it gets really expensive so I'm looking for n inexpensive healthy way if eating

Hi again Annie.  Just wanted to add to Eric's good advice.  During the winter I have a hard time eating enough salads so I make soups.  I love soup and it is an inexpensive way to eat very healthy and you don't have to cook every night.  There are great recipes on line and just GOOGLE Healthy Recipes.  Here is one link:  http://allrecipes.com/recipes/healthy-recipes/

I will buy a bunch of organic Kale and add it to everything; all my soups or stews and even enchiladas or spaghetti sauce!  I prefer kale over mustard greens but that is a personal choice.  Both are really good for you. 

Katie

Title: Re: Harvoni Side effects
Post by: Katie on February 02, 2015, 09:25:35 pm

It is well worth finding using a cheap coffee grinder or old school hand grinder, you will find that commercial processed spices are inferior to what you can do on your own for a fraction of the cost and you will use less because it will be fresh.


Great minds think alike Eric.  I have one grinder for my coffee and one for my spices.  I even dehydrate lemon peels and grind them up to make my own lemon pepper!
Title: Re: Harvoni Side effects
Post by: SickTired1 on February 03, 2015, 02:16:22 am
Count me in on the lightheadedness.  Day 6 of tx harvoni plus full load of riba. Otherwise so far so good!
Title: Re: Harvoni Side effects
Post by: BG42 on February 03, 2015, 06:42:39 am
Hi Everyone,

I'm still waiting to get my final approval for Harvoni. In the meantime, I'm still lurking in the forum thread and reading your helpful and comforting posts! :) They really help, and give me an idea of what to expect when I get approved.

Speaking of the approval, I did get the approval from the insurance company for an 8 week treatment of Harvoni. I received that letter at the same time as my denial letter for the 12 week treatment. My GI doc firmly believes the 12 week treatment is best for me because of my stage 3 fibrosis. So now they are going back and forth and working to get my 12 weeks approval. So for now, I wait. I did get my letter from Gilead saying my co-pay was only 5.00!!! I feel super lucky, so now just waiting for a 12 week approval. Here's hoping I get it!



Title: Re: Harvoni Side effects
Post by: fuzzy72 on February 03, 2015, 07:57:47 am
Hello fellow fighters. I have a question about Harvoni side effects. I have 24 days left of 12 weeks.  At 4 weeks I was undetected. I have night sweats every 1 to 2 hours every night.  This started to be every night right around the 4th week.  I drink plenty of water and other than sleep deprivation and being tired I am tolerating well. I see many discussions on the side effects but rarely about night sweats. I was diagnosed in October 14, also have cryoglobineimia,  cirrhosis.  The cryo has not improved as much as I thought it would by now either. Any thoughts appreciated.
Title: Re: Harvoni Side effects
Post by: Amj1951 on February 03, 2015, 10:07:11 am
Katie if you really want to mess with the lab tech try half a jar of pickled beets about 12 hours before a urine sample test. I did that a quite few years back to my doctor when I had a to have an updated professional emergency drivers exam done for a job out in the bush for which the oil company insisted on a screening for drugs, diabetes and alcohol. His assistant almost had kittens on the spot. I got reamed out by the doc though. But passed the test with bright red pee no problem. Next time I might try asparagus.

I don't think Harvoni is causing me to have unusually dark urine but I know if I exercise hard and don't drink enough water or hold back too long it gets darker than usual. So yes most likely Harvoni is a little bit of strain on the human pipes and water reservoir system. I would only be concerned if you start feeling pain in the back associated with the kidney region and it is not relieved by passing urine. I felt a little obvious kidney and bladder pain at times but they have all gone now that I am well into the 24 week stretch.

Long time!! :) I LOVE your comments about the beets. I really like beets but the first time I actually noticed what happens, I thought I was bleeding to death. It was rather pathetic especially since it was like the middle of the night and I woke a doctor : )

I have missed your recipes. Not sure if you saw my other post but everyone loved the oriental dish.

Something new I was telling Kate, I have not slept well since being on the Harvoni. I sleep good, but wake at like 3,4 or 5 am, but "I" slept a good 8 hours last night so I am hoping that is all behind me. (Fingers crossed!!)

I go for my 4 week labs tomorrow. I think the liver doctor is excited to because they've called me like 4 times to make sure I'll be there.. like why would you miss THAT appointment of all things?!?! : )

I have to get moving. I hope everyone has a great day!
Meredith
Title: Re: Harvoni Side effects
Post by: wa7uib on February 03, 2015, 10:58:56 am
Hi everybody. I been staying abreast of everybody's comments and posts the 5 weeks I have been on the Wonder drug. They are so very helpful. Thanks everbody. We all pull together. I have a question now though. I wonder if anybody has had a problem with urinating every few minutes since they have started the treatment? I have this problem but no infection indicators. Don't have any burning or anything. I drink water all day and wondering if that's all it is. My family doctor put me on antibiotics, and I wonder if I even need those. Anyway thanks for anybody's input.
Title: Re: Harvoni Side effects
Post by: Long_Haul on February 03, 2015, 12:38:19 pm
Meredith, good luck on the blood test!

Larry, hang in there, I sometimes don't get more than a half hour between bathroom trips myself. It comes and goes. Most of the time things are more normal. Hang in there, things should stabilize at some point. It is good that you have you Doc involved.

Best wishes,


AL
Title: Re: Harvoni Side effects
Post by: Mugwump on February 03, 2015, 12:40:11 pm
Long time!! :) I LOVE your comments about the beets. I really like beets but the first time I actually noticed what happens, I thought I was bleeding to death. It was rather pathetic especially since it was like the middle of the night and I woke a doctor : )

I have missed your recipes. Not sure if you saw my other post but everyone loved the oriental dish.

Something new I was telling Kate, I have not slept well since being on the Harvoni. I sleep good, but wake at like 3,4 or 5 am, but "I" slept a good 8 hours last night so I am hoping that is all behind me. (Fingers crossed!!)

I go for my 4 week labs tomorrow. I think the liver doctor is excited to because they've called me like 4 times to make sure I'll be there.. like why would you miss THAT appointment of all things?!?! : )

I have to get moving. I hope everyone has a great day!
Meredith
Meredith I started another thread down the list where we should post things like recipes and the like. And thanks for the compliment about that dish. You can use the basic concept and substitute chicken but it does not work as well with a stir fry beef because of the classic Cantonese concept of hot, sweet and sour in combo with 5 spice so it works better with milder tasting meats.

I will post some other Chinese  classics I know in this http://forums.hepmag.com/index.php?topic=2118.new;topicseen#new thread along with some photos of how to prepare the ingredients correctly along with what the dish should look like. My all time favourite is an absolutely incredible version of how to do a black bean green pepper and cuttlefish dish that if done right the squid is super tender. It is really hard to prepare and in the very best of the West Coast restaurants is very expensive because or the prep involved not because of the cost of the ingredients. I would imagine that in the Southern US you should be able to get decent squid from Mexico. Some of our large high quality frozen squid comes from there. Preparing large squid correctly is an art and out here the Chinese are the absolute masters.

I know you will be UD Meredith! And as far as the sleeping goes, the beautiful part is waking up even if you have only had a few hours and not feeling like you have a hang over for the first time in so long that you forgot what it was to actually feel good.

That is the part that is amazing IMO, how fast the liver and your body actually heals once the infection is gone and your immune system stops working in overdrive.

My arthritis in my spine which was crippling is backing off to the extent that I am stable on my legs and not in serious pain, the swelling and susceptibility to cold in my joints between the phalanges in my hands has abated and actually reduced in size.  I can play music that I have not been able to play in years. Like I have said having an immune system working on over-drive for years to keep HCV from killing you is a two edged sword.  That was the real problem with interferon treatments they all make your immune work so hard that it is like having a very serious case of the flu. Harvoni along with a good natural immune response to clear the virus from the system seems to be a much better answer to out prayers.

Keep thinking the good thoughts everyone!
Eric 
Title: Re: Harvoni Side effects
Post by: moma on February 03, 2015, 01:57:48 pm
Holy Mole! I had a total break down last night. It started with anxiety and went into a full blown panic attack. Thoughts like, what do we know about the long term effects of this drug? Like I was being poisoned and used as a lab rat. Everything closed in on me. I finely took a lorazapam and calmed down after crying for an hour. My poor husband kept saying "it's just the medicine talking, everything is alright". I think if I had not gone through Interferon and had such a horrible reaction to it I wouldn't be so freaked out about Harvoni side effects. I know it's not the same, but when I broke out the other day in a rash I was immediately back 10 years ago taking Interferon. I'm into my 3rd week. Are any of you having depression on this? I'm usually a calm easy going person, not much bothers me. I feel like I'm going to jump out of my skin!!!!
MoMa
Title: Re: Harvoni Side effects
Post by: Katie on February 03, 2015, 02:22:35 pm
Hi Moma, So sorry you are experiencing anxiety. 

I have had some personality changes with Harvoni but not to your extent.  My motivation is gone and everything is a chore which is unlike me.  I make it a point to accomplish at least one thing a day, even though it may be just a small thing.  I have new flooring being put in the back room so my house is upside down with all of the stuff having to be moved out and that doesn't help as clutter is bad for my mental attitude but I congratulate myself on actually getting the rooms cleared out! 

I really don't want to see anybody or go anywhere and am happy to be just where I am.  It doesn't make me anxious, it is just not my normal self and it started almost immediately on this treatment. 

That being said, anytime we take a strong drug it may affect our mental attitude and it differs with the individual.  So I just remind myself of that when I start beating myself up for not being productive.  Others have mentioned anxiety on this forum so I am sure that is what you are experiencing.

I am very confident in this treatment and remember Solvadi has been around for awhile and the treatment has been improved with the combo of ledipasvi and it has undergone testing so I am not worried about long term negative side effects.  One thing I know, it is better than having liver cancer or in need of a transplant down the road.

I hope you are doing better today and it was a one time issue.  We are all here for you and you are fortunate to have a supportive husband!  Blessings to both of you!

Katie
Title: Re: Harvoni Side effects
Post by: mario555 on February 03, 2015, 02:30:43 pm
Moma. If you have (tons of) time, you can go back to Posts done since mid-october. You'll find many posts of people suffering from sudden panic attacks. For me it lasted 5 weeks. Now in my 12th week out of 24 I am starting to accept those panic attacks that go from 0/10 to 9/10 in 2 seconds flat! You might notice they don't last long... I also took Valium because of its long lasting effects. You are not different except that for the first time in the history of hep c, you have a tolerable treatment that will most probably cure us all! You do what you have to do to remain calm but stick with your treatment! You remember the good times we had on interferon and Riba? Just tell yourself the end of treatment is not that far away and the disease might (will) be a thing of the past!
Good luck momy? Or is it moma?
Title: Re: Harvoni Side effects
Post by: Mugwump on February 03, 2015, 02:54:21 pm
I'm into my 3rd week. Are any of you having depression on this? I'm usually a calm easy going person, not much bothers me. I feel like I'm going to jump out of my skin!!!!
MoMa
MoMa
It is very difficult to overcome the habits of worry that bring on depression. In the first weeks of treatment I too drove my poor wife to distraction with worry and irrational fears. I have a firm belief in the good will and spirit of the individuals who are trying to eliminate this terrible disease. There is no doubt in my mind that being HCV active and the feelings of insecurity and helplessness common among those who are diagnosed have caused many good people to give up hope and fall into deep depression.

I personally knew a gifted musician friend who ran a record store out where I live and he took his own life, he left a wife and son alone. The depression of having been diagnosed with the disease profoundly effected him and in the end he did not understand that others were not against him. I witnessed his pain and despair and how the diagnosis of HCV was largely responsible for his declining state of mind. In the early 1990's when he took his life he had a respected classical music record store that was going out of business because of the pitiful state of the industry and the stupidity of the record industry NOT because there was a conspiracy to take away his living as he came to believe. It was a tragedy that I deeply felt and from it I learned much. 

It is indeed unfortunate that there are those who make their living spreading FUD about the medical profession and have created an atmosphere that is counter productive. But it is the price we pay for free speech.

Please be kind to yourself and others, but have no patience with the disease itself which needs to be sent to hell where it belongs. It is ok to be grumpy if something gets in the way of your treatment but don't let the inevitable bumps along the way to SVR get you down!  Give yourself a chance to be happy and you will be. Again it is really important to find things to take your mind off the disease and learn to put the treatment for disease in a clear and straight forward perspective, that way it will be much easier to get through. 

I am certain everyone here is pulling for you so are the good people who are treating you and the people you love.

Keep up the fight you will win!
Eric
Title: Re: Harvoni Side effects
Post by: anniemybaby on February 03, 2015, 03:58:33 pm
I just ordered my last bottle of harvoni had a really strange night last night I usually can sleep n since being on harvoni I'm even extra tired but last night insomnia I didn't go to sleep till about 4:30 am n only slept 2 hrs I finally decided I needed to take something for me to rest not feeling so great but I am drinking lots of water
Title: Re: Harvoni Side effects
Post by: Amj1951 on February 03, 2015, 04:34:52 pm
Meredith, good luck on the blood test!

Larry, hang in there, I sometimes don't get more than a half hour between bathroom trips myself. It comes and goes. Most of the time things are more normal. Hang in there, things should stabilize at some point. It is good that you have you Doc involved.

Best wishes,


AL

Thank you AL!! : ) My follow up appointment is for Friday.. they say should have results by then. I know these aren't the ones that count but I am anxious to hear I am really not a on a sugar pill : ) ha! The energy is scary!

I hope your having a great day!

ERIC.. I'll respond to yours in a bit. I have to run out.
Meredith
Title: Re: Harvoni Side effects
Post by: moma on February 03, 2015, 06:10:03 pm
Thanks everyone for all the feed back. I just couldn't understand these crazy thoughts and feelings. Next time I see my doctor I'm telling him not to be so glib telling his patients there are NO side effects. Makes a person think they are nuts!
Katie I want to see your house when it's all done. It all takes so much time, but worth it.
Mario the name is MoMa like the museum. My Grandsons call me that. They are 4 & 5, and my whole world. I think if it weren't for them I wouldn't bother doing this treatment. But they make me want to stick around.
It just so happens I have a bunch of fresh beets waiting to be cooked. Try cooling them, dice and marinate in a vinaigrette. I love a big bowl of them topped with blue cheese dressing.
Thank all you sweet courageous people.
MoMa
Title: Re: Harvoni Side effects
Post by: Karen1124 on February 05, 2015, 06:11:18 pm
I am new to this site, I received Harvoni today I took my first pill at 2:50 pm.
Praying for the miracle like everyone else here.

Geno 1
VL 2million
40/64
F3
Title: Re: Harvoni Side effects
Post by: pmm on February 05, 2015, 06:34:39 pm
To Mario555

Thank you for responding to my post about blood pressure. I did go to urgent care and they took my bp and said yes it was high but they didn't want to give me anything that might not work with the Harvoni. They told me to put away my home bp monitor (very good advice) and just go there next week for another check. I have also been extremely anxious all of a sudden (I have to be the most not-anxious person ever normally) and I don't know if that is bp or what.

 I also got my 4 week results with my Hep Doctor on Tuesday and I was undetected. Yay!

 That was tempered by the blood work showing a very high ammonia plasma level (148), my doctor said she would report both ammonia and bp to Gilead. My ALT is now 13 and AST is 18 so an improvement there, but it was in normal range before.
Title: Re: Harvoni Side effects
Post by: moma on February 05, 2015, 07:20:18 pm
Hey Mario,
I have crazy blood pressure normally (up and down) and even when it's high I'm not anxious. So I think its the medicine. I'm having a lot of anxiety ever since starting Harvoni. Just keep an eye on the bp, try meditation or acupuncture.
Even now being on bp meds it still creeps up.
MoMa
Title: Re: Harvoni Side effects
Post by: HHburme on February 05, 2015, 07:28:43 pm
Welcome Karen......you are on your way to being cured. Lot of good info and help here. Day 55 of Harvoni for me. I was UD at the 4 week mark and going for 8 week labs soon.
Title: Re: Harvoni Side effects
Post by: Katie on February 05, 2015, 08:04:08 pm
Hi Meredith..What good news on sleeping 8 hours!  It is wonderful!  Glad you are doing better.  Let us know your results so we can celebrate your success with you!  I am sleeping really good too, but have been tired and light headed the past week or so. 

I am on my 3rd and final bottle, so I am not worried about it, and I have been pushing myself a bit with the remodel being done.  My house is upside down as EVERYTHING has had to come out from the back bedrooms and into the living room...ARRRRGGGG!  I gave away 5 big bags of clothes and have several more, plus bags and bags of books!  So I have been busy.  It will be so good to get it all done, everything put back (still have to paint the bedroom but I like painting).  Clutter is destructive to me and my dog and cat wonder what the heck is going on!  HA!

Welcome Karen,  You have found the best place ever to share concerns and get support and information.  It really helps get through those tough days that we all have and the uncertainty.  Only advise I have is eat healthy, drink lots of water, rest when you need to and be proactive and informed.  Knowledge is power and it is reassuring.  It's the unknown that drives me crazy!

Moma, Eric and Patti....sorry about the blood pressure issue and it is something to keep an eye on especially if it isn't normal.  Mine has stayed consistently good, but as we have seen, things can change.  Also on the ammonia plasma level, it can be caused by a high protein diet along with other things, but it is probably just part of your treatment as everyone here seems to have different issues, depending on their overall health.  I would definitely keep on top of it though as your level seems very high.

Annie...are you sleeping better the past couple nights?  Lack of sleep causes so many issues.  I hate it and sympathize, so hang in there. 

Enjoy your day everyone and I just wanted to let you who are snowed in, that we actually have snow in the forecast for this weekend and into next week.  Imagine that;  snow in Alaska!  I don't anticipate it to last long as the temperatures are suppose to be mild, so I am not in a panic about it.  I'm getting spoiled with such mild winter weather.

Katie
Title: Re: Harvoni Side effects
Post by: Katie on February 05, 2015, 08:12:00 pm
I got confused on who posted what.  I should do one post per person from now on, I think.

Pattie, you had the BP issue and the elevated ammonia level.  Sorry as you have gone through a lot, but you are doing SO well.  Keep the faith and my thoughts go out to you for everything to balance out.  Sorry again for the mix up!

Katie

I fixed it and hope I didn't get everything else backwards on the previous post.  Please remember I am lightheaded and sometime thick skulled!   :P
Title: Re: Harvoni Side effects
Post by: anniemybaby on February 05, 2015, 08:53:00 pm
Been extremely tired some days I don't even wanna get out of bed when I need to go somewhere all I can think about is getting back home into my bed :-[
Title: Re: Harvoni Side effects
Post by: Katie on February 05, 2015, 09:05:19 pm
Sorry to hear that Annie.  I think you stated you have lots of snow too.  That can curtail your motivation.  I know I feel so much better if I force myself to get out in the fresh air every single day, even if it is raining. I'll be honest, it is really hard to do sometimes.  The only time I don't is if the wind is blowing like crazy.  Even if it is just to walk around my yard for a few minutes, it is beneficial. 

In the morning I always lay there for close to an hour and relish it as it is the only time I am not in pain with my bad knee and bad back.  As soon as my feet hit the ground, there is pain.  I am going to my acupuncturist/chiro this coming Wednesday and she often can give me relief.  That being said, I know some days I don't want to get up and at 'em either, but moving is good.  Depression can set in if you let the exhaustion take over and I've always believed, the more you do to the more you will be able to do and the better it is for your mental attitude.

You take care.  I worry about you!  Everything is going to be OK!

Katie
Title: Re: Harvoni Side effects
Post by: kate0b1 on February 06, 2015, 06:36:28 am
update on pee (sorry), i am almost done week 7 (last bottle should be here tomorrow), and now my pee has stopped with the weird smell (it lasted from about week 3 to now), so katie do you think this means the smelly aliens are dead??

kate
Title: Re: Harvoni Side effects
Post by: mario555 on February 06, 2015, 07:07:40 am
Kate. I am at week 13/24 and the smell is not over! It's not always there probably because of the water I drink but comes back regularly. Sorry!
Lately what bummed me out was for the early news of the virus coming back after 8 weeks of treatment. I have the feeling we'll see more of that! I think when they do their studies, the patients chosen were determined by their high likelyness to be cured. It makes me think of the wonderful milleage Ford tells you you'll have and after purchasing the car, you never get close to it! I am not saying the product doesn't work, I am saying it might be a tad lower than what's advertised!
This is why I'd be leary to take the medication for 8 short weeks if I'd be close to the borderline with the 12 weeks treatment. I hope I am totally wrong!
Title: Re: Harvoni Side effects
Post by: Karen1124 on February 06, 2015, 09:47:27 am
Good morning all thank you all for the warm welcome! tToday is day two for me I'm taking my pill at 9 o'clock a.m. Yesterday I cook it at 2:50 p.m. Have not had any side effects yet so I'm going to go on with my routine I'm going to jump on the trampoline and walk three and a half miles and pray for no side effects! hope y'all have a great day! I look forward to reading everyone's post each day!
Title: Re: Harvoni Side effects
Post by: anniemybaby on February 06, 2015, 10:46:03 am
Thanks Katie I'm trying you said exactly what my GI Dr said try to get out at least for alittle everyday she's also worried about depression she said its very common in hep c patients I hope your feeling better I don't like to whine to much cause I know there's a lot of people worse than I am I try to remain strong n optimistic have a good day n I hope your acupuncture works heard it does wonders
Title: Re: Harvoni Side effects
Post by: audreywald on February 06, 2015, 11:12:18 am
5 weeks into the Harvoni; over 15, 000, 000 VL. As of today, 5 weeks later. I am UNDETECTABLE!!!

Still having a lot of problems with the acid reflux disease as I can't take  any meds for that (and I had a small arsenal) still have to on it for 5 more months, but it's looking really good, never thought I'd live to see the day!
Title: Re: Harvoni Side effects
Post by: ak on February 06, 2015, 02:44:13 pm
HI haven't posted since I started treatment. On week 2/12 of Harvoni. Overall amazed how well I am tolerating it. Had a few of the expected side effects but one that is really bothering me is having the chills. No matter what I do I cannot get warm. Nose and fingers seem to be frozen. I was never one to be cold in the past so this is quite a change. Also it seems everyday at 4pm I kind of crash and burn.. just feel like I hit the wall, irritable tired, difficulty concentrating, headache.  I take my daily dose at 9:30 PM. I have a history of high blood pressure and can tell the Harvoni can make that worse. I also noted some mild heart palpatations. All in all I can deal with these as I am so grateful to be on this medication.
My best to all,
Ann
Title: Re: Harvoni Side effects
Post by: Katie on February 06, 2015, 03:04:03 pm
Hi Ann.  I am so glad to hear you finally got on the Harvoni blessing!  Your issues with being cold are strange, but I have come to realize, everyone has different experiences with this treatment.  I get worn out much easier than in the past as well even though I feel so much better and my insomnia is gone.  At week 8 I started getting lightheaded and my mood is not as joyful.  I am not really depressed, but just a tad darker than normal and don't care to be around people.  Even long phone calls irritate me!  Ha!  I also experienced more shedding than usual and still am but it is nothing serious.  I just notice more in my hairbrush and after a shower.  Nothing to panic about as other medications have cause this with me as well.

Several folks have BP issues and I would definitely mention that to your doctor along with the cold extremities.  They may be related.  I think I remember you saying you are a nurse (?), so I am sure you know all of this better than I do, but a reminder never hurts!   ;)

Take care and know you are on the road to crushing this monster once and for all!

Katie
Title: Re: Harvoni Side effects
Post by: Katie on February 06, 2015, 03:07:26 pm
update on pee (sorry), i am almost done week 7 (last bottle should be here tomorrow), and now my pee has stopped with the weird smell (it lasted from about week 3 to now), so katie do you think this means the smelly aliens are dead??

kate

Hey Kate!  Congratulations, that surely must mean those smelly little buggers are out of your system!   :D :o :P
Title: Re: Harvoni Side effects
Post by: kate0b1 on February 06, 2015, 05:36:40 pm
@mario, i am leaning toward everyone being on for 12 weeks also, at first I was a little jealous of everyone only being on that long, but now I think everyone maybe should be on 12, lol I'm sure the ins co's care what I think. My last bottle should be here in the am and I won't stop worring about it until it's here, I had a little drama with thus refill so I'm egey about it being here !
Title: Re: Harvoni Side effects
Post by: Katie on February 06, 2015, 06:19:12 pm
5 weeks into the Harvoni; over 15, 000, 000 VL. As of today, 5 weeks later. I am UNDETECTABLE!!!

Still having a lot of problems with the acid reflux disease as I can't take  any meds for that (and I had a small arsenal) still have to on it for 5 more months, but it's looking really good, never thought I'd live to see the day!

Congratulations Audrey!!!!  Here is to you success in stomping out that monster alien!

I have a hiatal hernia and get acid reflux on and off.  Hadn't had a problem at all after starting Harvoni until around my 7th week of treatment.  Lasted about 10 days and then was gone again.  No rhyme or reasons for it but it was really hot.  More so than I remembered.  Maybe your's will get better too.

 Finger crossed for you!

Thanks for sharing your good news!

Katie
Title: Re: Harvoni Side effects
Post by: Karen1124 on February 07, 2015, 11:16:00 am
This is day 3 of  Harvoni. I read Ann's post about having cold hands and feet, I also have been cold which is very unusual for me. I can live with that! Lol! I also feel like I have more energy! Have a great day everyone!   Karen

Title: Re: Harvoni Side effects
Post by: audreywald on February 07, 2015, 03:35:48 pm
If my grandson, Luke is deceased, I don't know if I can go on. He was "my person". Now I posted some really dumb stuff on Facebook and my husband is so mad at me I don't even know if he wants to stay with me. I do want to get well but I don't know if I have no one to take me to my Dr. appts as I am not allowed to drive right now. I am from Chicago but now live in a small town in Arkansas, which I dislike very  much. But my 2 remaining grandsons are here as well as my daughter. My relationship with my daughter is pretty rocky sometimes so I don't think I could live with her even though I am pretty sure she would not let me be on the streets. I don't think it's the drugs or illness that have made me crazy, I think it's my grandsons disappearance that have loosened my screws.
Title: Re: Harvoni Side effects
Post by: Katie on February 07, 2015, 04:43:57 pm
Hi Audrey,  I certainly don't know your situation other than what you've recently posted, but it wasn't that long ago you said you and friends who know Luke think he has just gone away.  Hopefully he is OK and will show up for you so try and keep those positive thoughts.

Are the police aware of this and are they looking?  You might want to contact them and ask if they have heard anything. 

I am sorry you have this stress and if you talk to your daughter and explain what is going on so she understands the pressure and worry, she can be there for you.  Maybe your husband just needs to clear his head.  We all have ups and downs and are emotional when dealing with a serious illness and treatment and you can go into FB and delete posts. It sounds as if he has hung in there with you with other treatments and throughout this disease so he must understand how difficult all of this is for you.  He must be worried about Luke too.  Men react differently than women in most cases when there is a loss and not knowing is a horrible thing to go through.  Communication is important and maybe your doctor can suggest someone to help you through this or maybe a good friend can help.  Don't let depression set in and spiral down as without some support that can happen.

You've made great progress with Harvoni so try and let it continue to cure you and just get through each day with hope and determination.

I send healing thoughts for you and your family.

Katie
Title: Re: Harvoni Side effects
Post by: Mugwump on February 07, 2015, 04:47:54 pm
@audreywald
I can only tell you that HCV causes more than internal injury as the human body tells your mind that there is something terribly wrong. I know that even before I was diagnosed with HCV I knew there was something wrong and I experienced a constant feeling of being in danger. This led me to lose faith in others and do things that made sense to me but were in truth the wrong decision.

YES HCV infection can and does cause severe psychological problems as well as liver damage. It can cause mental aberrations that can make individuals do irrational things and lose the essential sense of security we all need to get along in society. When there is something wrong with your liver and your blood has an imbalance with toxins it certainly can cause imbalance in brain chemistry.

There are other ways that the infection can cause you to have mental instability. In my situation it actually caused long term increased levels of thyroid hormone by causing my immune system to attack my thyroid gland. This caused periods of mental instability for years before I even knew that I had HCV.

You have overcome the first hurdle to being free from this terrible disease keep up the fight against the disease for your sake as well as all who you love and love you! Try to put your life in a true perspective. Fear and uncertainty is hard to deal with so be certain that you are on the road to being free from a disease that certainly does cause more than just liver damage.

I truly understand what is happening and hope you find your way we are all pulling for you.

Eric
Title: Re: Harvoni Side effects
Post by: anniemybaby on February 07, 2015, 06:34:46 pm
I have a question I took my dose if harvoni and vomited about 2 hrs after do I need to worry bout what if I lost that dose
Title: Re: Harvoni Side effects
Post by: fllazylady on February 07, 2015, 06:52:21 pm
Hello Everyone happy weekend,
As you know after 12 weeks of treatment I am still detectable so they added ribavirin for the next 12 weeks with my treatment. I have had elevated blood pressure like 173/80 which is very unusual for me I tend to be normal or low and my heart is beating very fast. Has anyone else had this type of side effect from adding ribavirin to their treatment? Concerns me because today my left arm was hurting and my left leg for some reason and my boyfriend just had a stroke two months ago and it just making me a little leery. I will call my doctor on Monday just wondering if anyone else experienced this. :-\ :(
Paulette
Fllazylady
Title: Re: Harvoni Side effects
Post by: Katie on February 07, 2015, 06:53:05 pm
I'm not sure but it seems it would have dissolved and gone into your system by then.  Might depend on how much food was in your system too.

Maybe a moderator could answer this.

How are you feeling, Annie. Hope you aren't getting sick!

Katie
Title: Re: Harvoni Side effects
Post by: anniemybaby on February 07, 2015, 09:24:36 pm
Hi Katie I'm doing OK thanks for asking I'm just alittle tired of this whole battle and as for the vomiting not sure Dr prescribed me zofran for nausea I keep telling myself 4 more wks I hope your well have a good evening
Title: Re: Harvoni Side effects
Post by: Marijayne on February 07, 2015, 10:19:50 pm
I'm into my 2nd month and everything I read here I can relate too..not much to add that has not already been said.

I did see a Doc the other day and they did my BP 3  diff times and it was 170/100.
 I have always had a BP of 120/80.  I thought it may have been from the Pristiq but now I'm wondering if its the Harvoni. hmmm.
My mind still feels foggy and my energy level has not increased but I'm sure looking fwd for the day it does!
 :-*
Title: Re: Harvoni Side effects
Post by: Deborah on February 08, 2015, 02:43:12 am
I finished treatment 3 days ago.  I am noticing that I can now slack off on water a bit w/o the nausea and light headedness setting in, but still peeing alot.  My sleep is still bad but the bad dreams and sweats seem to be tapering off.  Energy seems to be more normal (less frenetic).  The small side effects seemed to get worse the last week or two, but the finish line was a great motivator!  I am anxious to see if my BP has started to drop back down, which I'm sure it will...  With so many of us experiencing elevated BP, I believe it's important to report it as a side effect.  (I told my doctor AND filed an FDA report online.)  For some people this side effect could be serious but we seem to be the only folks who know about it!  I will be back with the VL in a few weeks! :)
Title: Re: Harvoni Side effects
Post by: Katie on February 08, 2015, 03:03:37 am
Thanks for the update Deborah and congratulations on that last dreamsickle pill.  I have 12 more pills to go.  I felt great the first 8 weeks, in fact better than  I had in years but for this last 2, I haven't felt nearly as good.  My BP is fine, although normal, just slightly elevated, but my energy level bottomed out and my attitude has gotten a bit gloomy, more negative and edgy than usual and my urine still stinks, even when clear.  I think I am saturated with Harvoni.  Maybe that's good as the monster aliens won't find a place to hide!  Death to all of them!!!  >:(

So I am looking forward to finishing up and will be right behind you! 

Hope you keep improving and you have great news with your tests.

Please let us know how you are doing.  It will be interesting to get some results.  Since Harvoni came out so recently there isn't any SVR12 or SVR24 results and I want to check and see what they list the common side effects in say 6 months or a year.  I bet the short list expands some.

Here's wishing you a great new start and a clean, long lasting cure and healthy new life!

Katie
Title: Re: Harvoni Side effects
Post by: kate0b1 on February 08, 2015, 06:13:31 am
@deborah, im a little jealous of being done lol, i just got bottle three yesterday and im happy/sad about it. I am so ready to be done this journey. @katie, i was just thinking last night about my energy level, i was feeling really well but boy my lack of motivation is not great. i am currently in the middle of painting my kitchen cabinets (really long story for another day lol how that came to be) and i could use some help staying on task. No headaches lately but my stomach has been bothering me, i don't know if the meds or just a stomach ache ! on the upside my pee has stopped smelling but now its a really strange green color (wait what lol).  ugh AND i have to work this w/e  :'(
hope everyone has a good sunday
kate
Title: Re: Harvoni Side effects
Post by: Lynn K on February 08, 2015, 06:23:30 am
Congrats on finishing treatment Deborah!

I just received bottle 4 week lucky 13 of Harvoni and week 4 Ribavirin.

My last CBC says I am slightly anemic now after 2 weeks on Riba hemoglobin is now about 10 with 11.1 as low normal but this was expected. The exciting thing is my platelets are 148 and I haven't seen them over 90 in probably 5 years

Good luck to all
Title: Re: Harvoni Side effects
Post by: fllazylady on February 08, 2015, 02:30:31 pm
Wow keep up the good work Lynn. Waiting to see results from first week on Ribaviren n Harvoni combo. Been having issues with High BP. Calling on Monday about that. Can't seem to get under 160/75. Went for a walk and everything this morning trying to rest even resting the blood pressure is high been monitoring for four days now. Was this a problem for you? Other than that I really can't complain a little anxious..
Have a beautiful Sunday
Sending you light and love
Paulette
Title: Re: Harvoni Side effects
Post by: Katie on February 08, 2015, 02:54:25 pm
i am currently in the middle of painting my kitchen cabinets (really long story for another day lol how that came to be) and i could use some help staying on task.

That is an ambitious project Kate!  I am in remodel mode too.  Probably wasn't a good thing to do while on treatment but I thought it would be completed before I started Harvoni.  Then I hurt my back so I've been plugging away....ever so slow.  Got the painting done, trim put up, closet clean out and the floor will be installed tomorrow.  It sounds impressive but it was done with baby steps and I've been kind of stressed over having my house upside down.  So once I can start putting everything back where it belongs and purging stuff I don't need anymore I should be able to relax.  Clutter is bad for mental health and energy.  Forcing yourself to accomplish things when your motivation isn't there is difficult and it really didn't get to me until about 2 weeks ago.  I am not looking forward to having guys here, disrupting my routine but will be elated to have it completed.  So weird and not like me.  <BIG SIGH>

Here's to progress on projects!  (I'd rather just go back to bed)  HA!

Katie

oh...I would think the color comes from something you ate unless it continues.
Title: Re: Harvoni Side effects
Post by: Tpropane on February 08, 2015, 11:40:27 pm
Someone else posted here about swollen lymph glands. I had one in my right groin for a few days. Not too bad. It went a way on it's own. Now I have another under my left jaw. A little more irritating. If not gone in a day or so I'll call my doctor. But when I think about it, HCV is in the blood and has invaded the lymphatic system and every other part of m body. It's bound to work hard and adding extra burden to other systems working to eliminate it. In my case my kidneys (washing with lots of water) seem to be functioning great. To be a little gross, every time I flush I picture flushing HCV down the toilet and saying good riddance. Also I have, like someone else here, had some very hard stools. A lightly steeped cup of Smooth Move herbal tea at bed time seems to do the trick. Plus a BIOK rice vanilla super probiotic on an empty stomach 1 hour before my morning Harvoni.  Don't want to treat any of the sfx with drugs as they aren't that bad. Using super healthy low fat, low sodium, mostly vegetarian diet with a little lean meat or the occasional egg or yogurt. Otherwise I'm a million times better than the old treatment and not suffering at all. Completely manageable. Every corner of my body is helping clear the virus since my liver isn't currently working all that well.
Yawn. Someone else said more sleepy than fatigue. I also kind of agree with that.
Night Peeps.
Sweet dreams of health.
 :)
Title: Re: Harvoni Side effects
Post by: Katie on February 09, 2015, 01:13:32 am
Hi Tpropane,

Personally, I wouldn't use Smooth Move as Senna can be harmful to a damaged liver if used often.  I prefer to not take that chance or to give my liver anything extra to deal with while on treatment.  I munch on dried prunes, eat beans in soup or chili once a week and make low sugar oatmeal cookies with dried fruit, coconut and pecans for a tasty, high fiber snack.  Flax seed is also an excellent source of fiber and I'll put that in everything and it is especially good in rice.

My pharmacist did tell me Milax (over the counter laxative) does not go through the liver.  It goes from the stomach directly to the bowels and out and does work good, just give it time to work and don't over do it.  I only used it once to get things moving and now control the problem with my diet.

Just my opinion and sharing what I do.  I've had chronic constipation for years and control it that way.

Sleep tight and glad you are doing well.  I am too with 17 days left of the magic pill!  YAY!

Katie

Title: Re: Harvoni Side effects
Post by: Mugwump on February 09, 2015, 08:52:14 am
Katie and Tpropane;'
Oh boy the gory details, yes I also have had the "hard rock" problems that is only relieved at the end of the concert when the smoke clears!

What has helped me the most is a good bowl of old fashion gruel in the morning made from whole grain steel cut. There is a reason why the Scots like to wear man skirts and I suspect it comes from eating too much oats and the fact that pants are way too slow! :o  ;)
https://www.youtube.com/watch?v=yThLhbmdNUs
Title: Re: Harvoni Side effects
Post by: Ruthie on February 09, 2015, 09:09:30 am
After taking my first Harvoni last night, it did make me very sick to my stomach. I wasn't surprised because everything hurts my stomach. I took some phenergin. I already take it for stomach problems.

 I had a little headache, but not bad. My right kidney has a few stones, so it was a little achey after the pill. I drank more water for my head and kidney. Then I put the heating pad on my kidney for a bit and it was fine.

From reading this forum, I knew to drink a ton of water. I made chicken and vegetable soup for the week-good nutrients plus liquid. I drank a good 48 oz of water last night.

I do have a bit of a headache this morning, but I may be getting a migraine.

TY for all the tips and discussion so I knew what to expect and how to deal with things!
Title: Re: Harvoni Side effects
Post by: Mugwump on February 09, 2015, 10:39:03 am
After taking my first Harvoni last night, it did make me very sick to my stomach. I wasn't surprised because everything hurts my stomach. I took some phenergin. I already take it for stomach problems.
Great to hear you are on the route to UD Ruthie! In your situation it might be a good idea to eat something mild and easy on the stomach when you take the Harvoni, there is no recommendation against eating a small amount when taking the pill.

In my situation it is completely different, because I take thyroid meds it is better if I do not eat anything substantial at the same time as taking the thyroid med especially foods that load up the digestive system with carbohydrates.

I am lucky I have a cast iron pit down there and taking the Harvoni and my thyroid med with just some water and say a small bowl of cereal or one piece of toast in the early morning when my system will quickly ingest food seems to be the ticket. Then I wait about 3 hours before eating anything over about a hundred calories in food value.

Best wishes and may your treatment be as easy as mine has been!

Eric
Title: Re: Harvoni Side effects/after stopping
Post by: Asherah12 on February 09, 2015, 11:26:15 am
Anyone besides me experiencing side effects from ending the treatment? I was used to the Harvoni, but since stopping have experienced a lot of fatigue and some wierd digestion issues. It's only been four days, after three months of treatment. I have been no detectable viral load since the end of the first month, down from 2 million. At border of 2 and 3 on the liver hardness scale. Thanks!
Title: Re: Harvoni Side effects
Post by: Bob V on February 09, 2015, 11:47:55 am
I've not had any issues with my BP or HR since starting Harvoni. Today will be dose 62 of 84.
On my run yesterday I noticed my HR was high and inconstant for effort. Even stopped and it continued to be high. I was stopped at one point and started to get dizzy looked down and my HR was climbing.... I guess it could of been my HR adjusting to hypotension. I walked the last couple of miles home. Took my BP after eating and it was kinda low 82/60, HR 80. Normal BP for me is 90/60-110/80 so nothing to worry about.

This morning I woke up and I knew I wasn't feeling right. Before getting out of bed I checked my BP 137/80, HR 70. My resting HR is normally 38-42. I've never had a BP that high. If I don't come down with a cold/flu I gotta think it's the Harvoni.

So it's going to be a TV day..maybe take the dog on a good walk.

Title: Re: Harvoni Side effects
Post by: Ruthie on February 09, 2015, 12:28:55 pm
Thanks for the advice, Eric. I took it last night with a bowl of soup. I'm wondering if I had too much on my stomach. But my stomach is such a princess that it may not matter LOL

After a couple cups of coffee and water, my headache went away, so that's a good thing.

Now I just feel blah. I have to believe that's the nasty bug fighting and losing the battle against the Harvoni
Title: Re: Harvoni Side effects
Post by: Karen1124 on February 09, 2015, 01:02:20 pm
Day 5 of Harvoni I've had cold hands and feet twice! I feel like I have more energy! So far so good! I've been drinking a lot of water. (As suggested on this forum) Does anyone know if you can do castor oil packs while on Harvoni? Have a good day soldiers!    Karen
Title: Re: Harvoni Side effects
Post by: hope4cure on February 09, 2015, 01:08:04 pm
Finished week 3 on 2/6 and the only side effect I continue to feel is fatigue. If I am not keeping busy, I end up taking a nap for about 2 hours in the afternoon. I am finding that I am really tired after work, more than normal. The one nice thing about the fatigue is being able to fall asleep very quickly at night. :)

All and all, no complaints so far. Looking back, I would have started to take the pill at night, but I felt the morning time was easier to remember to take and within the same hour each day as recommend.

This week is the big 4 week lab work. I'm nervous and excited at the same time.
Title: Re: Harvoni Side effects
Post by: nicole_1234 on February 09, 2015, 03:11:05 pm
Holy Mole! I had a total break down last night. It started with anxiety and went into a full blown panic attack. Thoughts like, what do we know about the long term effects of this drug? Like I was being poisoned and used as a lab rat. Everything closed in on me. I finely took a lorazapam and calmed down after crying for an hour. My poor husband kept saying "it's just the medicine talking, everything is alright". I think if I had not gone through Interferon and had such a horrible reaction to it I wouldn't be so freaked out about Harvoni side effects. I know it's not the same, but when I broke out the other day in a rash I was immediately back 10 years ago taking Interferon. I'm into my 3rd week. Are any of you having depression on this? I'm usually a calm easy going person, not much bothers me. I feel like I'm going to jump out of my skin!!!!
MoMa

Hi Moma! I had the exact same thing for weeks 2-4 on Harvoni and had to take Ativan to help with panic attacks. I also had a couple of bouts of crying that were quite terrifying. I think it was a combo of being triggered emotionally by starting treatment (like you the horrors of interferon came flashing back to me), and the chemical effect of the medicine. I cannot say for sure why the anxiety stopped but I believe my body acclimated to it after a few weeks and my emotions were comforted when I got my first test that said undetected.

I agree that I wish my nurse had not said no one has side effects because it was a terribly lonely place feeling alone in my inability to cope.

What helped me when I was having anxiety was warm baths, lavender and aromatherapy, any self care like abyanga (warm oil self massage). The Ativan actually made it worse for me. It curbed the anxiety but brought on a depression like none other.

I am 10 weeks in and doing great now other than a headache in the mornings. Although my body is really achy and I wanted to ask anyone on the forum if they are finding their muscles and bones hurting. My the thoracic spine shoulders and neck were bothering me so much I got a massage yesterday but then I woke up with the worst headache ever. It her to move and took me two hours to get out of bed. Now I feel okay with several waters coffee and Tylenol. Two more weeks to go, I hope once I stop treatment I bounce back quickly and the morning headaches stop.
Title: Re: Harvoni Side effects
Post by: Katie on February 09, 2015, 04:15:54 pm
Hi Nicole and Moma....yes there can be many different side effects for different people as this forum has shown.  Makes you wonder if the test folks were asked the right questions or felt intimidated by mentioning those effects that came and went or weren't that big of a deal.

I already have a lot of muscle and bone aches to begin with, however have had a few new ones pop up, on and off.  The cord in my neck, going to my shoulder would be so painful at times it would take my breath away. Fortunately I have a tens unit and that took it away after about 20 minutes.  I have never experienced anything like that before and it has stopped.

I was really happy when I first started, almost giddy from the treatment.  Harvoni definitely affects your mood.  Very happy but no motivation.  Since week 9 I am no longer happy.  I wouldn't say depressed but probably close to it and my new found energy is depleted.  Very tired and kind of sick feeling so I remind myself my system is probably saturated with the medication and my system is working overtime and it will soon be over.  (Feb 25th is EOT).

All in all, I am having an easy go of it compared so many, but certainly sympathize with you.  Hopefully everything will mellow out as the Harvoni leaves our systems and we no longer battle the alien parasite of Hep C so stay diligent and do whatever it takes to feel better!  Wednesday is acupuncture for me!

We are warriors and we will win.

Katheen
Title: Re: Harvoni Side effects
Post by: nicole_1234 on February 09, 2015, 04:22:04 pm
Wow Katheen we have the same EOT date. And thanks for reminding me, I will book an acupuncture appointment today!

Title: Re: Harvoni Side effects
Post by: Lynn K on February 09, 2015, 04:34:23 pm
I guess because I have been through so much before with 3 interferon treatments and now having cirrhosis this treatment with Harvoni is nothing to me any more than a vitamin pill. I guess I am fortunate or maybe because I've "been down so long this looks like up to me"
Title: Re: Harvoni Side effects
Post by: nicole_1234 on February 09, 2015, 04:52:35 pm
It is definitely a walk in the park compared to interferon/riba. Oi
Title: Re: Harvoni Side effects
Post by: Karen1124 on February 10, 2015, 11:25:45 am
Day 6 no problems! Going to walk a few miles!! Have a great day all!
Title: Re: Harvoni Side effects
Post by: Tommync11 on February 10, 2015, 04:30:52 pm
hey everyone,

Well its day 11 on Harvoni side effects are very minimal slight headaches only when i don't drink enough water it seems. fatigue in the afternoons ( normal for me anyway). not really bad at all so far.doc appt thurs for first labs we will see i guess after that.if its doing its job!! will keep you all posted wish  everyone is smooth sailing .ttys

Tom
Title: Re: Harvoni Side effects
Post by: Islandgirl on February 10, 2015, 07:16:41 pm
Greetings fellow warriors 8)

Kathleen and Nicole, we have the same end date - 2/25/15 - also we have the same side effects.  I could have written Kathleen's post, and yes, I'm having joint and muscle pain like Nicole.  Off and on I'm having stomach issues and pain in the right lower abdomen into stomach area.  Harvoni must be in there kicking the dragons around and OUT ;D 

Looking forward to seeing us all post SVR12 (or 24) sometime this year and experiencing the FREEDOM of being able to say CURED!!!!!  We WILL get there!
....Islandgirl
Title: Re: Harvoni Side effects
Post by: Katie on February 10, 2015, 07:27:22 pm
Thanks for that Island girl as sometimes you just wonder what's going on.  Cool that you and Nicole and I will be going through this at the exact same time and can really compare notes.  It helps me so much to have fellow alien dragon fighters with me. 

OMG it is already Feb 10th!  Only 15 more pills!  WOW!  Exciting and kind of scary too.  Then the waiting begins.....I don't wait well so I will need you guys!

Katie
or Kathleen   ;D
Title: Re: Harvoni Side effects
Post by: Ruthie on February 10, 2015, 08:04:45 pm
Is anyone else having crazy extreme thirst? I know we need to up the water on Harvoni, but this is ridiculous. I've drank a good 150 oz of water today (plus 16 oz coffee) and I still feel dehydrated.
Title: Re: Harvoni Side effects
Post by: nicole_1234 on February 10, 2015, 08:20:22 pm
Yeah Katie and Island girl, let's kill this virus for good!!! The 3 months wait will  be over before we know it and it's very very likely we will beat this thing!

Nicole
Title: Re: Harvoni Side effects
Post by: anniemybaby on February 10, 2015, 08:22:51 pm
Just got my last bottle of harvoni 4 wks to go  :)
Title: Re: Harvoni Side effects
Post by: Bob V on February 10, 2015, 08:25:20 pm
Yay! Annie
Title: Re: Harvoni Side effects
Post by: anniemybaby on February 10, 2015, 08:59:25 pm
Awww thanks bob ;)
Title: Re: Harvoni Side effects
Post by: Katie on February 10, 2015, 09:06:27 pm
Hope you are feeling better Annie.  I am in full remodeling mode with 2 carpenters and think it was a mistake to do it at this time.  I am exhausted and it's hard on me, but it will be done in a week.  I can do this...I can do this...I can do this...I can do this...

HA!  Whew...I think it is almost worse than moving.  All my clothes are on my couch and boxes and clutter everywhere.  Time to purge and get to early spring cleaning after the dust settles.  Hope my energy returns soon!

Katie
Title: Re: Harvoni Side effects
Post by: anniemybaby on February 10, 2015, 09:24:37 pm
I'm doing OK Katie thanks for asking hope your well n remodeling can b fun ;) were looking to buy our first home I'm waiting till finished with treatment n back to work full time then I'm going to start looking I'm leaning towards anywhere where there's n ocean n sand lol maybe Delaware have a good night n don't work so hard n good luck I go for my 4 wk blood work on Fri not real sure what it consists of I'm still list lol got my 2 wk done n never heard a word about it fr no one
Title: Re: Harvoni Side effects
Post by: Islandgirl on February 10, 2015, 09:55:02 pm
Annie, I didn't hear anything about my 2 wk either, just the 4 wk and then didn't get the results until a couple of weeks later.  Hang in there.  ....Islandgirl
Title: Re: Harvoni Side effects
Post by: Katie on February 10, 2015, 10:23:21 pm
Annie, please request a copy of all of your tests for your files.  They are your records and they should provide them with no problem.  Good luck with your test and I hope all comes back showing positive results.

Your first home is always so exciting.  Have fun with that and for now just dream and make a must have list.  <BIG SMILE>

Katie
Title: Re: Harvoni Side effects
Post by: Bob V on February 10, 2015, 10:27:46 pm
Annie, Islandgirl
I call my doc a week after labs and ask over the phone for any abnormal results. With VL I ask what the exact wording is.

And I agree with Katie get a hard copy for your records.
Title: Re: Harvoni Side effects
Post by: Islandgirl on February 10, 2015, 11:47:38 pm
You are so right.  I do have hard copies of everything that has been done - even from way back, long before Harvoni.  No one will ever keep track of this as well as we do and there are times we need to review and remind our doc about some of our history.  Too many patients and it's our job to make sure we get the care we need and that something doesn't get accidentally overlooked.  One of the things I appreciate most about our Forum family is the knowledge I've gained.  It makes us stronger and better able to ask the right questions and understand our fight from a broader perspective.  I appreciate this forum and the members more than I can express.  Absolutely love you guys!  ....Islandgirll
Title: Re: Harvoni Side effects
Post by: nicole_1234 on February 11, 2015, 04:02:56 am
Katie, I did something similar a few weeks ago. I decided it was a good time to repaint my entire kitchen and take apart my studio and redo everything. Maybe I'm glutton for punishment or perhaps it just feels good for life to keep moving on and feel like I can accomplish things treatment or no treatment.

Today I'm feeling very blessed to have gotten this treatment, and grateful for my life. I was very lucky to attend the Stevie Wonder Grammy tribute and watching him perform in all his greatness, reminded me how often our struggles make us who we are and sometimes all the better for it. I will always have true empathy for people struggling with chronic illness and I will have a new appreciation for my body and my health for the rest of my days.

I often come to this forum with complaints but I'm also so grateful there's all these strangers willing to listen and care and try to help. Tonight I just want to express my gratitude. Thanks for being here!

Title: Re: Harvoni Side effects
Post by: kate0b1 on February 11, 2015, 06:22:58 am
@nicole_1234, what a nice post, i think thats how many of us feel but its nice to be reminded when we are have a not so great day.
@katie, lol, half of my kitchen stuff is in the dining room right now, and 1/4 of the cabinet doors are in the basement, I'm trying to do this a section at a time so it won't freak my ocd out  ;). I want to get it done before the warm weather, i just ordered a ton of plants (almost finished tearing up the yard for the fence). probably not a great time to do all this since i am also going out of town next week but on the bright side, but by time i am done i will also be done meds (29 days but whose counting).
kate
Title: Re: Harvoni Side effects
Post by: Mugwump on February 11, 2015, 08:46:39 am
@nicole_1234, what a nice post, i think thats how many of us feel but its nice to be reminded when we are have a not so great day.
@katie, lol, half of my kitchen stuff is in the dining room right now, and 1/4 of the cabinet doors are in the basement, I'm trying to do this a section at a time so it won't freak my ocd out  ;). I want to get it done before the warm weather, i just ordered a ton of plants (almost finished tearing up the yard for the fence). probably not a great time to do all this since i am also going out of town next week but on the bright side, but by time i am done i will also be done meds (29 days but whose counting).
kate

@kate
Could be some people are suffering from MSD which results in a sudden attack of RMS because of the treatment?
I m glad Harvoni is not causing any of these problems with me yet!

Martha Steward's Disease quite often causes a sudden onset of Re Modeling Syndrome in my house as well! I am very fortunate that in my monogamous relationship I am not being hit by this again. When I was on interferon we were in the middle of a whole house rewire and reno and it took about three months just to figure out what colour the rooms were going to be painted post electrical work!

All bets are off when I finish my treatment in early May though as it is quite evident that my HDL is swelling in size and is looking different in colour every time is see it! A swollen Honey Do List is a sure sign of an imminent attack RMS!

Of course this is just from the male perspective.

Good thing I keep our sawsall, dry wall tools, levels, squares and other essential tools for major surgery in good shape because they will be put to use in June or perhaps July or August or September ........ To heck with it I will just go fishing!

eric
Title: Re: Harvoni Side effects
Post by: mario555 on February 11, 2015, 09:14:47 am
I am reading all your posts and see many of you are counting down the pills left. Must be an exciting feeling! All I have is that I am on my 2nd part of the treatment! I'm at week 14... By the time
 Iam finished taking the pills, you'll be receiving your news about your SVR12 results. You can be sure I am rooting for you all...
At the beginning of week 14,  I have no more physical effects. Even the thirst is over. What remains is a really bad mood and no patience whatsoever... I can't even wait 30 seconds for my wife to bring the salt; I'm up and getting it myself! Every little thing I try to do seems to bring with it a pack of little problems and with my lack of patience, I must do everything to remain calm. I think God is testing me! As an example, I had to go back to Canada by plane last week. On my way back, I got "chosen" for a full body search at the airport. You'll think 'It happens!'. The problem is that I was chosen 3 times in a 2 flight segment!! To top it off, I have one of those Nexus card where I am considered "low risk"!! This is just an example but in my case it's continuous!!
Anyway, I'll keep counting my pills and try to keep my mood in check; pill 79-78-77... 
Title: Re: Harvoni Side effects
Post by: Asherah12 on February 11, 2015, 09:36:52 am
Mario: I had some of those feelings, and I found out for me that even though the thirst was gone, it helped my mood a lot to drink more water. Meaning, maybe I really needed it even though I wasn't getting the craving prompts. Although nothing makes TSA any more fun.
Title: Re: Harvoni Side effects
Post by: Islandgirl on February 11, 2015, 09:40:22 am
Kate, Katie & Nicole, you guys are getting so much done!  I keep waiting for that burst of energy that some have had :) but keep moving anyway.  Had a bad night but determined  that today will be a good one.  Thanks for being such good role models :)  ...Islandgirl

Mario, I certainly understand the bad mood and lack of patience - I battle that some days too.  I'm caregiver for my 91 year old mother (who lives with me) and yesterday was one of those days when it was really hard to be patient - lots of deep breaths 8)  Hang in there - I'm counting and recounting pills too and silently repeating positive affirmations.  Eric, my honeydo list here never ends here either - hard to prioritize the have to do and want to do list :-\  Now, for enough energy to be able to help accomplish my part in all this!  ...Islandgirl

Title: Re: Harvoni Side effects
Post by: Mugwump on February 11, 2015, 10:22:38 am
. I can't even wait 30 seconds for my wife to bring the salt; I'm up and getting it myself! Every little thing I try to do seems to bring with it a pack of little problems and with my lack of patience, I must do everything to remain calm. I think God is testing me!
Anyway, I'll keep counting my pills and try to keep my mood in check; pill 79-78-77...

Mario
I have a little bit of a sustained blood pressure increase issue and some vision problems and tinnitus issues from the increase. I have been ignoring them because they are nothing in comparison to what happened to me on interferon for the last 12 weeks of tx. I suspect we might be experiencing a slight electrolyte imbalance because of Harvoni.
 
This time of year in Canuck land fruits and veggies with high levels of magnesium and potassium can get a little expensive but it is more sensible than going for supplements. I will ask my regular Doc if he could do a little test regarding electrolytes because perhaps this is what is happening because of the increased level of renal functions caused  by the treatment and the dietary habits of northern peoples during winter.

Perhaps others with more experience and expertise on this could comment? But it seems to make sense to me if you are passing more urine and your liver has been working overtime clearing billirubin.

Oh to heck with the sudden increase in carbhydrates!!! My bmi is too high from the increase in hunger from this treatment! Instead of pigging out on food I will just try some Gator Aid and see if that helps first. It might be cheaper at this time of year than attacking the fruit and veggie section of  grocery stores here in BC!

Sorry to hear that the Americans are starting to treat all Canadians as possible terror suspects again. Guess I will not be going down south any time soon to fish their early river and lake Cutt and Bow season. I have a habit of terrorizing other fly fishermen with my technique using what I call a Karma Bug which catches fish when many other concoctions of fur and feather on a hook do not someone is likely to report me for engaging in unfair fishing practices!

Regards and I hope you feel less anxious soon

Eric
Title: Re: Harvoni Side effects
Post by: anniemybaby on February 11, 2015, 12:11:18 pm
So when I started harvoni alittle over 3 wks ago the specialty pharmacy called me and I asked about any meds I was on I said well I take tramadol for pain n they said that was fine and I said I take advil pm in evenings if pain keeps me awake n they said that's fine well GI Dr called me today to check how my headaches are I said not bad when I take the advil pm she says WHAT you can't take that with liver disease I'm like omg n in tears she says Tylenol is fine if you don't exceed so many MG's so why did the pharmacy say it was OK n GI Dr says no I hope I didn't make things worse by taking advil
Title: Re: Harvoni Side effects
Post by: hope4cure on February 11, 2015, 12:55:36 pm
Annie

My doc said I could take an Advil if I needed to for headaches. I actually got sick the second week into my treatment with a fever (got it from my daughter) and I took 1 Advil for 2 nights in a row.

That is the only medication I have taken since starting Harvoni and even stopped any vitamins I was taking. I have arthritis in one knee and stopped taking Turmeric which helped a lot with my pain and even stopped it.

Not sure why you doc said advil is bad when Tylenol is the one that is hard for your liver. It seems like not all doctors know what can be taken and what can't be taken since it is such a new drug.

Below is the Harvoni facts sheets and I don't remember it saying Advil can not be taken.

http://www.gilead.com/~/media/Files/pdfs/medicines/liver-disease/harvoni/harvoni_pi.pdf

Per goodrx.com:
Ibuprofen and other NSAIDS rarely affect the liver. Unlike acetaminophen (Tylenol) most NSAIDs are absorbed completely and have negligible first-pass hepatic (liver) metabolism. In other words, the way NSAIDS are metabolized makes liver toxicity (hepatotoxicity) very rare. Estimates are that 1 in 100,000 NSAID prescriptions result in acute liver injury. Generally NSAIDs are very liver-safe
Title: Re: Harvoni Side effects
Post by: anniemybaby on February 11, 2015, 01:02:57 pm
Thank you hope4cure that's what I thought n specialty pharmacy said it was OK I don't do well with no sleep n I usually take 2 advil per day but GI Dr scared me :-[
Title: Re: Harvoni Side effects
Post by: Mm on February 11, 2015, 01:27:51 pm
Hi All,
I am midway in my 12 weeks of Harvoni and have been having daily headaches for the past week.  I am wondering if it's me or is the cumlative effect of Harvoni which is increasing my side effects.  I had slight headaches during the first week and they stopped, but started again.  Today I woke up with a headache which is still pretty strong, even after taking 2 advil.  I generally don't get headaches. I take my pill before dinner.

The good news is that I was  undetected at 4 weeks.  Viral load went from almost 6 million  at the beginning of treatment.  At the 2 weeks test, my liver function tests were normal and viral load was down to 68.  This truly is a miracle drug in spite of the headaches.
Title: Re: Harvoni Side effects
Post by: Katie on February 11, 2015, 03:05:30 pm
As far as I can tell, all over the counter pain relievers  are not good for a compromised liver, and it seems doctors may vary with their opinions.  Many on this forum take Tylenol but I have read where ibprofen is better, so who knows.  I think any of them taken every single day would be bad and would personally only take them if I absolutely have to.  I am fortunately not prone to headaches.  I've had a headache, other than with the flu, maybe 6 times in my entire life.  I have had occasional throbs in my temple on treatment, but it passes very quickly. I would encourage drinking more water as some have commented that helps.  Check out this site and click through the pages as it has good general information.

http://www.mayoclinic.org/diseases-conditions/toxic-hepatitis/basics/causes/con-20026939

I hope everyone double checks with their doctors to find out what a safe amount of any medication is if it is needed, and it doesn't hurt to question them on different things but you need to be informed to know what questions to ask.  I always make a list of questions and take to my appt so I don't get distracted and I do that even when I make a phone call to the office.  Having a biology background, I know just enough to be a bit of a pain for doctors and have no problem having them give me explanations.  I often print out things I have come across and take it with me so they know where I am getting the information.  I figure it is my body, and my decision on what treatments to take and they seem to respect that.  If they don't, I don't go back.

Please feel better everyone.  I am so grateful we have these conversations as we are the ones going through this treatment and just think how confused and alone we would feel without each other.  We all suffered with this alien monster for so long, and in some cases decades without any support that I just can't imagine going through this treatment alone.  Many of us are getting close to the end and we will have successes and failures and we'll need each other even more as the weeks pass.

I love you, my kindred spirits!

Katie
Title: Re: Harvoni Side effects
Post by: moma on February 11, 2015, 05:46:37 pm
Waiting for UPS to deliver my second bottle of pills. I only have one left. When I called about tracking the order, they told me deliveries will be late because of storm damage. Mario I'm right there with you having no patience. So you can imagine my reaction.
OK, my doc told me not to take anything but Aleve. Never Tylenol, so now we can be even more confused. Feeling like we're all just dears in the head lights. Thank goodness for all of you. This is the only place I feel safe getting knowledge of this treatment.
OMG the UPS truck just came up the road and stopped at my house! Wow that's a relief. By the way, has anyone spaced out and taken 2 pills in a day?
Good thoughts- MoMa
Title: Re: Harvoni Side effects
Post by: Islandgirl on February 11, 2015, 06:56:37 pm
MoMa, congrats on your UPS delivery!  It's always such a relief when that magic bottle arrives!!  I set the alarm on my phone for 6PM every day to help prevent me from forgetting or from taking a double dose.  I confess that I've resorted to counting pills to make sure what I have left matches my calendar that I've numbered for pills/days through EOT.  Don't trust that doggone brain fog 8)  Sending good thoughts also. ...Islandgirl
Title: Re: Harvoni Side effects
Post by: Katie on February 11, 2015, 08:52:43 pm
I've been known for my patience which made me a good teacher of fish sampling and data techniques.  I don't think they would think that of me now! :o

I have a calendar numbered and take my pill at 9:00-9:30 each day.  I've had to count them twice.  Brain fog definitely in the evening!

My spark came back for the first 8 weeks of treatment but is definitely gone and I have dark circles under my eyes.

I know some of this is from the stress and break in my routine with remodel guys here but most it's from the treatment as I should be EXCITED to be getting the final touches done!

I took a break today to have a light dessert with a friend and we spent an hour and a half talking about the end of life care her beautiful daughter received this summer from MS.  The care lacked much and most was due to lack of communication and hospital procedure.  My friend is having a meeting with the administration and social workers to recommend some changes to benefit the patients.  All in all it was a depressing conversation in my present state. but I was honored she shared with me and it made me feel so blessed and fortunate to not have a horrible disease without hope for improvement or a cure.  It was a good reminder of how many are suffering so much more than I am and just how easy I have it. 

Thought I'd share that with you as we all need reminders once in awhile.

Moma...glad your meds came and I hope you are doing better!  Always good to hear from you Island Girl, Annie and Eric and CONGRATULATIONS to you Mm!

Katie
Title: Re: Harvoni Side effects
Post by: Ruthie on February 11, 2015, 09:02:33 pm
I've had horrendous anxiety all day. It just so happens that one of the pharmacists from the pharmacy I got Harvoni from called today. She wanted to know when I started treatment and any side effects. I talked to her about the anxiety. Apparently, it's quite normal for people with prior mental illness issues to have anxiety problems on Harvoni. I wish my gastro and I had known that before.

I'm going to my GP tomorrow to discuss meds for it.
Title: Re: Harvoni Side effects
Post by: mario555 on February 11, 2015, 10:17:00 pm
Anxiety is suffered by 1/3 the population. I don't think it's a mental problem... I have anxiety at times but the "level" of it on Harvoni is something else... Being calm in bed at 0 level anxiety and all of a sudden being at 9 in two seconds flat because of a fleeting thought is not related to the anxiety periods I felt in the past! Sometimes in my Harvoni crises (have had 4-5 in the first 7-8 weeks) I got kind of scared which never really happened before. I'm happy I did not hesitate to keep a couple valiums close... It is definitely a side effect for some of us. The good part is that it goes away after 8 weeks. Now I only have my bad mood and impatience....
Title: Cure for the Headaches
Post by: Asherah12 on February 12, 2015, 01:55:22 am
I think I said this before, but really really acupuncture or acupressure on the liver heat clearing points got rid of the headaches for me. Ask an acupuncurist where those are. Then there are no worries about taking over the counter meds. I never heard about the anxiety before; I have that anyhow and don't remember if I had it on the Harvoni. Almost a week out after finishing treatment and starting to feel like myself again.
Title: Re: Harvoni Side effects
Post by: nicole_1234 on February 12, 2015, 02:14:23 am
Mario and Ruthie, I was trying to find Lucindas post regarding anxiety on Harvoni. I was suffering from much higher levels when I began treatment and I do have a history with it, but I was doing fine for the previous year and when I started treatment it really kicked in.

I thought it was chemical but now I think it was also an emotional trigger. I know sometimes if you are prone to anxiety other things can make your body feel triggered such as too much caffeine and even though  it isn't a panic attack it can trick your brain with an elevated heart rate and just the fear of having a panic attack can send someone in to one. I know it doesn't make complete sense but anyone who has suffered from this disorder knows what I am talking about.

Anyway, I think the medication was knocking the virus out of me and I felt very wired and edgy, and that triggered my anxiety. I also think the emotional response to starting a treatment again, didn't help. I took ativan for 2 weeks, 1 or 2 (.5mg)per day.

 Once I cleared the virus at 4 weeks, the anxiety slowly began to fade and now at 10 weeks in I am fine. I'm more slightly lethargic and tired, with a bit of brain fog and headaches (mostly when I wake up). But no anxiety.

If any one can find the link to Lucinda's post I recommend anyone suffering anxiety answer the questionnaire she posted. She also recommended to report this to Harvoni, which I admits I have not done yet but I will tell my doctor and ask her to.

In the meantime this is what helped me: Baths, mediation, short walks in nature, and housework to help with the anxiety. All good distractions.  And a couple times just crying my head off.

Nicole
Title: Re: Harvoni Side effects
Post by: nicole_1234 on February 12, 2015, 02:17:11 am
http://forums.hepmag.com/index.php?topic=1952.msg10359#msg10359

here it is
Title: Re: Cure for the Headaches
Post by: Katie on February 12, 2015, 03:23:34 am
I think I said this before, but really really acupuncture or acupressure on the liver heat clearing points got rid of the headaches for me. Ask an acupuncurist where those are. Then there are no worries about taking over the counter meds. I never heard about the anxiety before; I have that anyhow and don't remember if I had it on the Harvoni. Almost a week out after finishing treatment and starting to feel like myself again.

I agree with Asherah on acupuncture and I use it to help with my ruptured disc as well.  It has been very beneficial to me for the past 11 years.

I did find this information on over the counter medications. Two different sites.

Frequently Asked Questions  (Since many have cirhhosis I thought it important to post this and please see statement in bold)
Q: Is it safe to take aspirin or Tylenol if I have hepatitis C?
http://www.hepatitis.va.gov/patient/faqs/aspirin-tylenol-safety.asp

Over-the-counter pain relief medications are usually not harmful. Check with your doctor first and take them in moderation. Overuse of acetaminophen (in Tylenol) can cause liver damage. Patients with hepatitis C should limit their acetaminophen (Tylenol) to two grams (four 500mg tablets) per day. Other drugs for pain include aspirin, ibuprofen, Motrin, Advil, Naproxen, and Aleve. They are safe in HCV patients who do not have cirrhosis. But, if a patient has cirrhosis, then ibuprofen, Motrin, Advil, and Naproxen cannot be taken at all. If you are not sure, always check with your doctor.
Hepatitis C Resource Centers
September 22, 2005; Last reviewed/updated: July 30, 2013


This one gives recomendations to manage pain without medications along with information.
http://www.hepatitiscentral.com/news/is_there_pain_r/

Hope this is helpful.

Hope everyone has a wonderful, pain free day tomorrow and rests well tonight.  Time for me to go to bed.

Goodnight,

Katie
Title: Re: Harvoni Side effects
Post by: Ruthie on February 12, 2015, 08:52:29 am
TY Asherah, Nicole, and Katie. I reported the anxiety last night. I do have bipolar, OCD, and PTSD. I'm pretty sure that's intensified it for me because I'm already predisposed.

LOL on the housework-I washed dishes, cleaned the bathroom, did laundry, and made my mom a homemade peach cobbler. Great minds think alike!

I'm having a possible allergic reaction to the Harvoni. I go to my GP this morning. I have the most God awful sores in my throat and on my tongue. My uvulaI looks crazy! I didn't put two and two together until last night. I did call My Support Path and spoke to a nurse.  I hope and pray the Dr can do something so I don't have to dc Harvoni.
Title: Re: Harvoni Side effects
Post by: Ruthie on February 12, 2015, 09:02:09 am
Mario, I was telling the My Support Path nurse last night that it feels like suped up anxiety! Usually my anxiety is nothing like this.

As for the mental illness, the pharmacist was talking about severe mental illness like bipolar, schizophrenia, etc. I have bipolar plus OCD and PTSD. It's interesting to know that people without these are still having the anxiety issues.

You have made me feel better just in the knowledge that I'm not alone.
Title: Re: Harvoni Side effects
Post by: Islandgirl on February 12, 2015, 09:27:11 am
Hang in there Ruthie, I'm really hoping your doc appt this morning will find a solution for your possible allergic reaction.  God bless you as you deal with the added anxiety issues coupled with that. 

Reading Nicole's post, I realized I could probably use a good cry or two myself.  With my 91 year old mom living with me, it's hard to be able to do something like that without worrying/upsetting her 

On the Tylenol vs an NSAID issue - my doc prefers I take the occasional Tylenol (no cirrhosis) as Hep C is a blood borne virus and aspirin,etc., are all blood thinners to some extent and she doesn't want to chance anything that would impact lab results - not just the Hep C but platelets, WBC, etc.  That's the gist of what I understood, but maybe not her exact words. 

Ruthie, we'll all be waiting to hear how you're doing and what the doc said today.  Good luck!  Sending positive, healing thoughts your way :)  ...Islandgirl
Title: Re: Harvoni Side effects
Post by: mario555 on February 12, 2015, 09:33:59 am
I just received my blood test results after 12 weeks of Harvoni. My ALT and AST are way down from the 200 levels at the beginning of treatment. I am still out of the 'normal range' but just a tad.. I was UND after 4 weeks and I hope it is still there because I am not due for another VL before 12 weeks after EOT. I am somewhat happy with the results. Harvoni does work! I am doubly happy that I am on a 24 weeks treatment because of the still high ALT - AST. These results show me it's a good idea to err on the longer treatment rather than the shortest possible... More studies would have to be undertaken to see the proper length of treatment based on tests results (ie; UND at week 4 but still high ALT - AST at week 12 or like some others here with still detectable VL but with normal ALT, etc..
We all know (or should know) that we are taking a drug that has been rushed through without being fully tested. People like me had no other options! For the ones that are not in a rush to take the pills should wait to see what happens with us first! As of this date, nobody outside the studies has had an SVR12. We are "real life", I can't wait to see in 8-12 weeks what results WE will have...
Title: Re: Harvoni Side effects
Post by: Bob V on February 12, 2015, 11:07:39 am
We all know (or should know) that we are taking a drug that has been rushed through without being fully tested. People like me had no other options! For the ones that are not in a rush to take the pills should wait to see what happens with us first! As of this date, nobody outside the studies has had an SVR12. We are "real life", I can't wait to see in 8-12 weeks what results WE will have...
----
Mario555
Kinda agree with this.
Title: Re: Harvoni Side effects
Post by: Mugwump on February 12, 2015, 11:09:46 am
Mario and Ruthie, I was trying to find Lucindas post regarding anxiety on Harvoni. I was suffering from much higher levels when I began treatment and I do have a history with it, but I was doing fine for the previous year and when I started treatment it really kicked in.

I thought it was chemical but now I think it was also an emotional trigger. I know sometimes if you are prone to anxiety other things can make your body feel triggered such as too much caffeine and even though  it isn't a panic attack it can trick your brain with an elevated heart rate and just the fear of having a panic attack can send someone in to one. I know it doesn't make complete sense but anyone who has suffered from this disorder knows what I am talking about.

Anyway, I think the medication was knocking the virus out of me and I felt very wired and edgy, and that triggered my anxiety. I also think the emotional response to starting a treatment again, didn't help. I took ativan for 2 weeks, 1 or 2 (.5mg)per day.

 Once I cleared the virus at 4 weeks, the anxiety slowly began to fade and now at 10 weeks in I am fine. I'm more slightly lethargic and tired, with a bit of brain fog and headaches (mostly when I wake up). But no anxiety.

If any one can find the link to Lucinda's post I recommend anyone suffering anxiety answer the questionnaire she posted. She also recommended to report this to Harvoni, which I admits I have not done yet but I will tell my doctor and ask her to.

In the meantime this is what helped me: Baths, mediation, short walks in nature, and housework to help with the anxiety. All good distractions.  And a couple times just crying my head off.

Nicole

Edit: Here is a link back to the anxiety and a word of encouragement from Deborah for those worrying about anxiety and bp problems http://forums.hepmag.com/index.php?topic=1952.msg14057#msg14057

Very good points Nicole and Mario
This is precisely why I am doing things that require absolute concentration and a calm approach to achieve a goal. It is a large part of why I study and write classical music. It may just be a hobby but it has helped me deal with the physiological and psychological problems associated with first, having hyperthyroidism, then being diagnosed with HCV.

Long term hyperthyroidism causes mental aberrations that can become quite serious. Not to mention it causes hypertension so it needs to be treated.

But this is my experience with the side effects of HCV and not all individuals will have their immune system trigger auto-immune responses that increase levels of thyroid hormone levels.

Harvoni, on the other hand, seems to return the individual undergoing Tx to a more normal level of response to things like caffeine and other stimulants. Perhaps having a very sudden normal reaction to adrenal functions associated with what was a compromised metabolism, does make people who have had abnormal liver functions and now are normalizing their liver functions because of treatment experience what seems to be dangerous responses to every day stimuli. And these sudden effects could easily be mistaken for something being seriously wrong.

Just my two cents and perhaps that is all it is worth but going by what we are experiencing as a group perhaps feeling normal for a change can be very hard to deal with when you have not felt normal in years. Here is hoping that this hypothesis is correct!

eric
Title: Re: Harvoni Side effects
Post by: Ruthie on February 12, 2015, 12:05:30 pm
Long story short: Dr and I figured out Solvadi has the oral sores listed as a side effect to tell your Dr about immediately. He put me on carafate (sp) to help coat it and ease the pain. And he gave me klonopin for anxiety.
Title: Re: Harvoni Side effects
Post by: Ruthie on February 12, 2015, 12:08:04 pm
Eric, I think you may be on to something there. Our bodies and minds have to get used to being normal. It makes perfect sense.
Title: Re: Harvoni Side effects
Post by: Islandgirl on February 12, 2015, 01:12:45 pm
Ruthie, I'm so glad your doc was able to help!  Good going to him so quickly, gold stars for you girl!  I agree with your and Eric's comments - I've had this so long I doubt I know what normal really is.  Maybe I'll find a whole new me, hehe

Mario, congrats on making progress with your ALT and AST levels!  We will all get there one way or another - one day at a time.  ....Islandgirl
Title: Re: Harvoni Side effects
Post by: Karen1124 on February 12, 2015, 02:32:50 pm
Hi Everyone,
I didn't post anything yesterday was my 7th day today is my 8th day on Harvoni.I was tired yesterday didn't work out much but today I really feel good! Don't know if I was tired just because or if it was the medicine. But other than that no real side effects! Have a good day everyone!  Karen
Title: Re: Harvoni Side effects
Post by: Mugwump on February 12, 2015, 04:38:26 pm
Annie

 
Below is the Harvoni facts sheets and I don't remember it saying Advil can not be taken.

http://www.gilead.com/~/media/Files/pdfs/medicines/liver-disease/harvoni/harvoni_pi.pdf

Per goodrx.com:
Ibuprofen and other NSAIDS rarely affect the liver. Unlike acetaminophen (Tylenol) most NSAIDs are absorbed completely and have negligible first-pass hepatic (liver) metabolism. In other words, the way NSAIDS are metabolized makes liver toxicity (hepatotoxicity) very rare. Estimates are that 1 in 100,000 NSAID prescriptions result in acute liver injury. Generally NSAIDs are very liver-safe
Remember those who have even mild cirrhosis are also at increased risk of vascular bleeding so NSAIDS and or any over the counter med containing ibuprofen if taken in large quantities could compromise the livers ability to heal even small vascular incidents. NSAIDS are anti-inflammatory and can in large doses cause dangerous problems for more than just people who have ulcers. Don't forget minor inflammatory reactions are natures way of dealing with minor hemorrhages.

http://my.clevelandclinic.org/health/drugs_devices_supplements/non-steroidal_anti-inflammatory_medications

The relevant caution from this organization about NSAIDS which includes common aspirin;

Common Side Effects:

Stomach pain or heartburn – this is the most common side effect.
Stomach ulcers – as many as 5% of patients may develop a stomach ulcer while taking NSAIDs. Ulcers may cause stomach pain, but some ulcers develop with no pain at all.
 Bleeding – NSAIDs (especially aspirin) increase the tendency to bleed in general (not just from ulcers). You should not take NSAIDs before surgery. NSAIDs should be avoided if you are taking blood-thinning medications (such as Coumadin). Increased risk of cardiovascular events (stroke or heart attack) especially when they are used for long periods of time or in very high risk settings (immediately after heart surgery).
Headaches, dizziness, lightheadedness, or a decrease in alertness (less alert than normal).
Ringing in the ears – may be due to treatment with salicylates, including aspirin. This can be eliminated by decreasing the dose.
Allergic reactions – rashes, wheezing and throat swelling rarely occur.
Liver or kidney problems are rare side effects. These problems can be evaluated by blood tests in patients who take NSAIDs for prolonged periods. People with any kidney problems should not take NSAIDs for prolonged periods.

For those patients who need to take NSAIDs for long periods of time, careful monitoring with your doctor, including blood work, can help to minimize your risk of side effects. However, serious side effects including ulcers, bleeding and obstruction can occur without any warning.

Please note: The side effects listed are the most common. All possible side effects are not included. Always contact your health care provider if you have questions about your particular medication.

.........................................

I can understand why Gilead is concerned about the possibility of individuals having dangerous internal bleeding because of the use of NSAIDS especially those who have long term liver damage and most likely have a weakened vascular system to some extent. I would not take them even if my GP said it was ok right now, I would rather put up with a little pain even if at times it makes me a grumpy old fart!

That said, personally I would not panic if I took a mild dose just to help get over a case of the flu if I catch it. 

I am in no way suggesting that anyone ever ignore the onset of serious sudden head aches, blurred vision usually accompanied by dizziness, disorientation or the sudden loss  of consciousness. This type of event should only be dealt with immediately by trained professionals even if it does not persist. Not by taking a trip to the drug or grocery store for more aspirin, ibuprofen, acetaminophen or any over the counter med or hairball remedy for that matter! 


eric


Title: Re: Harvoni Side effects
Post by: mario555 on February 12, 2015, 05:04:20 pm
Well laid out Eric. So what do you suggest for 'occasional' headaches or soreness? I am lucky not to suffer much from headaches and I have only used Tylenol. Since reading the posts, I am more mystified than before!! Help!
Title: Re: Harvoni Side effects
Post by: Ruthie on February 12, 2015, 06:05:17 pm
I'm not Eric, but I suffer from migraines, so I'll tell you what I do, Mario. First, drink some caffeine. Black unsweetened coffee is preferable. Then drink  a lot of water. For a regular headache, that helps a lot. For a migraine, I then use essential oils (basil and peppermint) or mentholatum/Vicks and rub it under my eyes, on my forehead, and on the back of my neck. I Then lay down and put a damp washcloth over my eyes.

For body aches and pains, take a hot bath. Just soak in it. Adding Epsom Salts seems to help a lot. I then put bengay, the basil/peppermint combo or mentholatum on the area and add ice or heat.

I try not to take many meds because I have weird side effects to everything. I think that's obvious from my side effects to Harvoni LOL These are all thing I learned from my GP and grandma.

I hope it helps!




Title: Re: Harvoni Side effects
Post by: Katie on February 12, 2015, 06:47:03 pm
I can't respond to headaches, since I don't suffer from them but just about every joint in my body is damaged from the field research I did many years ago.  All that wilderness "fun" required lots of hard work and it has caught up with me.  So I live with pain and only take something if I need it to break a high a fever.

Soreness:  I stretch.  I also have a True Back which is a hard plastic base with knobs that follow along the spine and has a curve you can use on your lumbar or neck.  It is uncomfortable for a few seconds but it stretches the spine and really helps.  It was developed by the Iowa Orthopedic college.

I also have a tens unit for electronic stimulation which is WONDERFUL.  Medicare will pay for it with a doctors approval.  The one I have is the Ultima 20 with 4 electrode pads and it has a variety of pulses for different areas of the body.  I highly recommend it and they also suggest it for headaches.  I use it for my bad knee, wrists, shoulder, neck and even my feet while watching television.

I can't get out of a tub anymore so I take hot showers and I also use ice and heat to relieve any inflammation.

I massage my legs and feet several times a week as I have neuropathy from my ruptured disc and need to see a back surgeon, but really wanted to get my liver taken care of before I even consider any kind of surgery.

Acupuncture is truly a benefit for opening blockages and relaxing everything and is good for organ, muscular and skeletal health.  It has kept me mobile but you need to find someone who is really into it.  I have gone to some that just aren't healers which did nothing for me.  The doctor I see now is also a low impact chiropractor as well and she does wonderful things with her magic fingers and needles.   She has helped many of my friends with headaches and migraines as well.

I always figure, when you are in pain, you REALLY know you're alive!  I would prefer to go dancing, or sky diving or hiking, but they are no longer an option.  LOL!  Fortunately I can still go fishing as long as there aren't any steep boat ramps.

This is just my personal regime and I have developed a high pain tolerance, which I know not everyone has, but it has worked for me and it is all liver friendly.

Katie
Title: Re: Harvoni Side effects
Post by: moma on February 12, 2015, 08:01:46 pm
Hello All,
Anxiety! I'm really pissed off that my doctor patted me on the shoulder as I was leaving his office telling me "and NO personality changes or emotional problems with Harvoni". Really?? No it doesn't come close to what it was like on Interferon, but there are definite anxiety, crying spells and all around wanting to jump out of your skin. I also called Gilead and report these symptoms. I totally agree with the comment that having been on a treatment before make me have horrific flash backs. Fearing all this will turn out not to work like before. Interferon, such a terrible treatment to go through (if you could even get through it). The ordeal of going through that and it no working has left me very leery about Harvoni. But having cirrhosis scares the crap out of me more!
Tomorrow will be 4 weeks into therapy. I have my first doctor's appointment since starting. Do I feel positive? Not really. Does anyone know how long the longest patient has gone undetected after stopping treatment?
Yes, yes, yes, acupuncture saved my life after interferon. I use it for just about every other health problem I've had including a heart attack. I made a standing appointment every Tuesday for the next three months.
I'm so grateful for this forum. Can't tell you how many times I've been trying to explain to some one a symptom or mental problem I'm having during this time and I have referred to some thing one of you have written in order to validate what I'm saying.
Stay Strong,
MoMa

Title: Re: Harvoni Side effects
Post by: Mugwump on February 12, 2015, 08:13:04 pm
Well laid out Eric. So what do you suggest for 'occasional' headaches or soreness? I am lucky not to suffer much from headaches and I have only used Tylenol. Since reading the posts, I am more mystified than before!! Help!
Mario the problem is precisely that pain relievers do not cure the underlying cause of the headaches and headaches and muscle aches can be caused by a chemical imbalance in the blood. I have noticed increased hunger on this med and slight headaches and muscle fatigue and general overall fatigue. But no where near to the extent it happened when I was on Interferon/Rib treatments. I have changed my diet to make sure I am eating things that increase electrolytes but do not have to much carbohydrates because I have enough resources in my body already and my muscles though large are not the largest part of my BMI. I am 5' 8" and 100 kg so I do not worry about starvation to say the least.

I did take one potassium/magnesium combo pill instead of robbing the monkeys of all the bananas in BC and getting my eight servings of fruit and veggies per day that is in the food guide!

It seems to be working and my energy level and aches and pains are easing. It could very well be that an electrolyte imbalance is happening to some of us near the end of treatment. For me the fatigue and headache effect was noticeable but not worrisome.

Like I said sensible use of over the counter meds should not be life threatening but taking them for every little ache and pain could indeed be dangerous and should only be done under close medical supervision.

Regards
Eric
Title: Re: Harvoni Side effects
Post by: Katie on February 12, 2015, 09:43:20 pm
I saw this on Facebook today:

"Healing doesn't mean the damage never existed, it means the damage no longer controls our lives." 
author unknown

I can't say I am there yet, but I am definitely moving in that direction!

Katie
Title: Re: Harvoni Side effects/ none so far drink plenty water
Post by: harvonitoo on February 12, 2015, 10:50:19 pm
I'm on my third month in another week and so far I have only had a few headaches which were manageable with one pill of Tylenol (500mg). I can count those headaches on my hand, probably 3 or 4 maximum. Since I started drinking water of well over half my body weigh in oz. ( 170 lbs weight = drink 85 oz of water thru the day) I still haven't had another headache. I read in here quite a few people suggesting to drink that much water. ( I have noticed an increase in hunger  ;) try to eat as healthy as possible, organic and low in salt foods!  Best of luck!
Title: Re: Harvoni Side effects
Post by: Ruthie on February 12, 2015, 11:41:47 pm
Moms, I'm glad you reported the anxiety to Gilead. There seems to be quite a few with it. The More we tell them about it, the greater chance it will go in as a side effect and can help others in the future!

And OMG, I've been telling my Drs and the pharmacist things everyone has said on here, too!
Title: Re: Harvoni Side effects
Post by: moma on February 13, 2015, 12:42:22 pm
Katie I copied down your quote. My 42 year old daughter has ptsd from a horrible drawn out situation. Quite her job, moved, and basically is frozen. This quote puts everything I've been telling her for 3 years now in plain language. Thanks-
And Ruthie, lets keep on getting the word out to all those who need it. Especially the medical society.
Ok, on my way to see the doc and get some blood test results!
Have a happy day-
MoMa
Title: Re: Harvoni Side effects
Post by: hepcondor on February 13, 2015, 06:37:23 pm
Hi,
New to the site and today was 8th pill. Not so bad with the headaches but this ringing in my ears is driving me crazy. Worse in the mornings and had a very slight panic attack today. Never had it at all before. Don't see this issue with any of you guys.
Also my lower back and knees are now in pain. I have had back surgery in the past but  has not really hurt in years. Don't know if it's related but sure seems a coincidence.
Good luck everyone!!
Title: Re: Harvoni Side effects
Post by: Mugwump on February 13, 2015, 07:01:25 pm
Hi,
New to the site and today was 8th pill. Not so bad with the headaches but this ringing in my ears is driving me crazy. Worse in the mornings and had a very slight panic attack today. Never had it at all before. Don't see this issue with any of you guys.
Also my lower back and knees are now in pain. I have had back surgery in the past but  has not really hurt in years. Don't know if it's related but sure seems a coincidence.
Good luck everyone!!

Yes some here have had panic attacks in the first 10,14 days, but you should start feeling good in a few days. I had a panic attack the first time I had a liver biopsy and I suppose I was a bit like a deer in the headlights to the staff doing the work.

Perhaps the strain put on your liver by Harvoni is causing fear, this is a normal reaction to liver stress. If you are a boxer and someone hits you in the liver this is exactly what happens. I am not making light of this I am putting it in perspective, as a member here called Battle the Beast might say "just think of the drug knocking hep C to hell where it belongs!"

Call your physician if you start feeling extreme pains in the upper right quadrant, or if the panic attack worsens over time. As others have indicated make sure you are well hydrated and do things to relax and you will find that the treatment is much easier to handle.

Welcome and I am glad to hear that you are on the road to clearing the virus from your system.

Eric
Title: Re: Harvoni Side effects
Post by: mario555 on February 13, 2015, 07:39:39 pm
Hepcondor. Welcome to the group! You should find many answers to your worries in here. As an example, I've had ringing in my ears that became pretty loud. It was mainly in one ear and could reach a pretty loud level. It can actually be beneficial if you're married, it's a hell of a good reason to bug off when your wife asks you something! It does go away after 7-8 weeks so I wouldn't worry at this point... As for the panic attacks, mine were heavy but short lived. They should also go away in some weeks. If you ask your doctor, he'll probably say that those symptoms were not mentioned so it's in your head!
Just tell yourself it should be over in 8-12 weeks and then you'll be free of the disease! Good luck to you!
Title: Re: Harvoni Side effects
Post by: Katie on February 13, 2015, 09:05:15 pm
Welcome hepcondor!  I agree with Mario and Eric.  My doctor is more tactful and just says "that's the first time I have heard of that". ;)

One thing they seem to fail to consider are the side effects that may be caused by Sovaldi.  They always tie the side effects from the added peginterferon alfa and ribavirin in previous treatments and their trials were with small groups that may not have included people with a variety of other health issues which may affect how our bodies respond.   I found this site and am going to post what it says. I got there when I GOOGLED Sovaldi Side Effects:
+++++++++++++++
What types of adverse reactions were reported when taking Sovaldi™?

In the clinical studies the most common adverse reactions when Sovaldi™ was used in combination with ribavirin were fatigue and headache. The most common adverse effect when Sovaldi was used in combination with peginterferon alfa and ribavirin were fatigue, headache, nausea, insomnia and anemia. Of course, one should consult with the prescribing information for peginterferon alfa and ribavirin as well for descriptions of the adverse reactions when using these medications.
Although less common, in addition to the adverse reactions mentioned above, the following adverse reactions were also reported:
•   pruritus (itching)
•   asthenia (weakness)
•   rash
•   decreased appetite
•   chills
•   influenza like illness
•   pyrexia (fever)
•   diarrhea
•   neutropenia (lowered neutrophils - type of white blood cell that surrounds and destroys bacteria)
•   myalgia (muscle pain)
•   irritability
Less than 1% of the subjects in the clinical study receiving Sovaldi™ combination therapy reported:
•   Hematologic effects - pancytopenia (particularly in subjects receiving concomitant pegylated interferon).
•   Psychiatric disorders - severe depression (particularly in subjects with pre-existing history of psychiatric illness), including suicidal ideation and suicide.
++++++++++++++++
Who is to say some or all are not caused by the combination of Harvoni.  We are all different and there are folks here that have experienced almost all of these.

I checked another site  on Sovaldi.com which mentioned pregnancy.  Since I am beyond that age, I haven't checked that, but for those of you that are if your doctor hasn't discussed this with you, I thought it important to post.
++++++++++++++++++
What is the most important information I should know about SOVALDI?
SOVALDI combination therapy with ribavirin or peginterferon alfa and ribavirin can cause birth defects or death of your unborn baby. If you or your sexual partner is pregnant or plans to become pregnant, do not take these medicines.

•   You and your sexual partner must use 2 effective forms of birth control and should not become pregnant while being treated with SOVALDI combination therapy and for 6 months after your treatment is over. Talk to your doctor about forms of birth control.
•   If you or your partner can become pregnant you must have a pregnancy test before starting treatment with SOVALDI combination therapy, every month while being treated, and for 6 months after your treatment ends.
•   Tell your healthcare provider right away if a pregnancy occurs while taking or within 6 months after you stop taking SOVALDI combination therapy. You or your healthcare provider should contact the Ribavirin Pregnancy Registry. If you are also infected with HIV and taking medicines to treat your HIV infection, an Antiretroviral Pregnancy Registry is also available. For contact information, please see full Prescribing Information.
+++++++++++++++++
Hope your treatment is smooth sailing Hepcondor, and it is helpful to see you aren't alone when experiencing some changes in your mood or health.  When I start feeling bad, I remind myself I am on a powerful drug and it is temporary and then do something nice for myself, knowing I can get through it.  So can you, and the three months tend to FLY by.  My EOT is the 25th and it seems like I just started!  We are all hear for you so don't be timid about asking questions and if we can, we'll give you are opinions!

Enjoy your weekend!

Katie






Title: Re: Harvoni Side effects
Post by: nicole_1234 on February 13, 2015, 09:58:06 pm
Hepcondor, I had some ear ringing and a few panic attacks in the first couple weeks. It all went away after a couple weeks and I rid my body of the virus and adjusted to the medicine. And I've had achy joints too.

Drink lots of water! It helps with all those things.

Title: Re: Harvoni Side effects
Post by: Katie on February 13, 2015, 10:09:46 pm
Mario,  Have you received your 12 week VL test results yet.  Sending you good vibes on that.  I'll be getting my blood drawn on the 27th.  I am going to wait 36 hours after my last pill to give it a little time without the medication cause if I am still detected, I'd rather know now than later.  Probably wouldn't mater but that is just me doing it my way.

Have a good weekend!

Katie
 
Title: Re: Harvoni Side effects
Post by: mario555 on February 14, 2015, 09:06:54 am
Katie. I will not have a 12 weeks VL given the fact I am on a 24 weeks treatment. Hopefully, once you attain UND which I had after 4 weeks, it doesn't come back. My enzymes are still out of bound but getting really close to normal. I am very thankful to be on a longer treatment because of those enzymes. When I started treatment I was F4 but with no obvious signs of cirrhosis with a VL of 8 millions and ALT - AST above 200. I also failed INF in 2000 and Peg-Inf in 2010 but I never went the whole 48 weeks.
I needed Harvoni now because I had started a downward spiral where I was taking less and less care of myself, I couldn't continue living with hep c.
I had followed Gilead closely over the previous 2 years and knew about the Harvoni coming out. I bidded my time and organized my finances accordingly. I needed this new treatment now! I sure hope the treatment works because I drained my insurance and I wouldn't be able to get additional help from my insurer until the end of 2016.
As I mentioned before, after 13 weeks of treatment there are no more side effects. I am just in a poor mood and impatient. So, good luck to all of us. It's been too long where our lives have revolved around hep c!
Title: Re: Harvoni Side effects
Post by: hepcondor on February 14, 2015, 10:54:25 am
Wow..Just hearing back from you guys that can relate made me feel so much better.
Woke up this morning to a lot less ringing and actually felt pretty good for the first time.
Eric, Mario, Katie, and Nicole..thank you very much!

Actually I did 2 things that could have helped last night. After work I took a vicodin. I know that's not good but I needed to give myself a little break. But more importantly I drank a quart of Gatorade instead of water last night. Felt better almost the instant it was going down. I did drink a gallon of water yesterday too but I guess my body needed the electrolytes. Weird huh.
Another thing is I am feeling a little "pumped up"..like I have worked out with weights or something this morning. Now that's got to be an unusual side effect.

Thanks again and let's kill this thing
Title: Re: Harvoni Side effects
Post by: mario555 on February 14, 2015, 12:21:11 pm
Hepcondor. For your pumped up feeling I did have so much energy in the first few weeks it was unbelievable. Unfortunately it didn't last long! I do undertake big jobs but I tire out at approximately the same time as before.
For your Gatorade. I did suggest that a few weeks ago because I feel too much water will deplete my electrolytes. I mix it like 2 quarts of water for every quart of Gatorade. Makes me feel better...
Good luck for the next week and get yourself back in shape while you have that extra energy but go slow!
Title: Re: Harvoni Side effects
Post by: Bob V on February 14, 2015, 02:57:37 pm
Hi Hepcondor
I was the same way for the first few weeks, I was able to do my normal exercise routine but that changed quick. Then I felt like I was getting sick every day, my runs were a struggle, that lasted another few weeks. Now it's day to day, some I'm almost like pre tx and some days I'm tired. Also I had some BP and heart rate issues last weekend but that seems to have passed.
Title: Re: Harvoni Side effects
Post by: moma on February 14, 2015, 04:34:34 pm
Hi hepcondor welcome.
Panic-Attack is my middle name!!!! Even got a prescription for Valium yesterday. Read previous posts and you'll find most all your symptoms, someone has had. I didn't think Harvoni was going to be such a mental trip. It's not as bad as Interferon, but the memories of past treatments and failures put me back to those times and I start to feel this is all bs.
Stay strong-
MoMa
Title: Re: Harvoni Side effects
Post by: Mugwump on February 14, 2015, 06:18:53 pm
Wow..Just hearing back from you guys that can relate made me feel so much better.
Woke up this morning to a lot less ringing and actually felt pretty good for the first time.
Eric, Mario, Katie, and Nicole..thank you very much!

Actually I did 2 things that could have helped last night. After work I took a vicodin. I know that's not good but I needed to give myself a little break. But more importantly I drank a quart of Gatorade instead of water last night. Felt better almost the instant it was going down. I did drink a gallon of water yesterday too but I guess my body needed the electrolytes. Weird huh.
Another thing is I am feeling a little "pumped up"..like I have worked out with weights or something this morning. Now that's got to be an unusual side effect.

Thanks again and let's kill this thing
After 10 weeks I am playing classical guitar with an easy relaxed power for the first time in over 25 year. I still have some myalgia in my major muscles but it is easing as I make sure that I stay on track eating right and working then resting while drinking fluids that have essential minerals.

I did take a supplement and it did help but the last thing I want to do is go overboard and overdose on potassium or magnesium! So I am not going gung ho thinking that more is better. That can be dangerous to say the least.

Here is hoping the recent break in the weather lets me get out steelhead fishing this year I could use some heavy exercise that will make me sweat rather than just stretching doing tai chi and playing the guitar. I am sure my body will thank me for taking a the break from lazy land!  Yes resting and relaxing during treatment is a good thing but there is such a thing as too much rest!

Keep it up condor you will turn the corner and free yourself in ways that we have all yearned for for years.

Cheers
Eric
Title: Re: Harvoni Side effects
Post by: Rod on February 14, 2015, 07:29:06 pm
Hey everyone im on day 2 of harvoni. Havent had bad side effects so far. Brain fog, blurred vision, burst of energy, sweats, at times but nothing crazy. I take it around 10 in the morning. I havent gone to work yet, but in a day or 2 i will. Kinda paranoid about falling out or something. I work inside installing floors so should i be concerned? Who else works while on treatment? Any tips for me?
Title: Re: Harvoni Side effects
Post by: Katie on February 14, 2015, 07:54:06 pm
Hi Rod, Welcome to the forum and congratulations for starting your treatment.

Did you have any of those symptoms prior to treatment?  I had horrible fatigue, brain fog and insomnia for several years.  They went away when I began Harvoni and I felt  10 years younger.  That lasted 8 weeks and then the fatigue came back and I felt miserable, just ached all over and kind of gloomy and a bit of vertigo for 2 weeks....then yesterday I woke up feeling so much better, as I do today.  With that being said, every person seems to react a bit differently so you'll just have to take things as it comes.  Maybe try and do things that aren't too strenuous or half days if that is possible.  Be sure to stay hydrated as plenty of water (min of 1/2 gal per day)seems to help many of us.  I take my medication a couple hours before bedtime (9:30) and it has worked out well, as I am sleeping a good 7-9 hours a night.  Something I haven't done for so long I can't even remember.  I try to do one active thing a day and if weather has not allowed it, I don't feel as good, so exercise is important.  If you get a metallic taste in your mouth that goes away in a couple days.  You will have subtle changes that come and go and hopefully your side effects are minimal.  I think they depend some on your overall health and how damaged your liver is or isn't.

Good luck to you and if you have any questions or concerns this forum is very helpful and supportive.

You aren't alone and we are all fighting this battle together.  Having people that understand, and are not judgmental is an incredible blessing.

Katie
Title: Re: Harvoni Side effects
Post by: Rod on February 14, 2015, 08:05:04 pm
Thanks Katie im new to all this. I was diagnosed 3 years ago and to tell you the truth ive been freaked out. I have no energy and thats been going on forever.
Title: Re: Harvoni Side effects
Post by: Rod on February 14, 2015, 08:06:44 pm
Oh and my memory is bad.
Title: Re: Harvoni Side effects
Post by: Katie on February 14, 2015, 08:33:33 pm
You will see improvements for sure.  I retired from a high pressured job as a research biologist almost 2 years ago because my fatigue and brain fog was impacting my work and that just stressed me out.  I am so thankful Harvoni showed up in time to help us get our lives back together.  Even when my fatigue returned 2 weeks ago, I was still sleeping and it was different so I knew Harvoni was still working,  That is what comforted me.  I only have 12 more pills to take for my 12 week treatment.  I am happy and yet anxious.  The wait for the blood work to see if I am undetected and if so then the 3 month wait to verify the virus is no longer in my system and replicating will be difficult for me, so I am counting on this forum to help me through that.

Have a positive attitude and be grateful, take good care of yourself with healthy food and adequate rest and listen to your body.  It will tell you what you need and if you start feeling down, just remember your system is fighting a monster alien virus and it is temporary!

Katie
Title: Re: Harvoni Side effects
Post by: Rod on February 14, 2015, 09:01:29 pm
Thanks Katie
Title: Re: Harvoni Side effects
Post by: kate0b1 on February 15, 2015, 07:40:40 am
@rod, hi and welcome, i work full time and like katie am in the middle of a house project. some days are great and some days not so much, i am sleeping well except my husband tells me i have been talking in my sleep like mad lol but i don't remember my dreams. some days i am cold (but its crazy cold here so maybe everyone is cold). i am really bad about drinking water on the w/e's so i usually pay for that in the evening, feeling really achy and usually get a headache (there is a lesson here that i am not apparently getting).

kate
Title: Re: Harvoni Side effects
Post by: Rod on February 15, 2015, 08:08:33 am
I hear ya kate. Are you on reatment now? If so how long? Will our energy return once virus is gone?
Title: Re: Harvoni Side effects
Post by: Rod on February 15, 2015, 08:09:21 am
Treatment
Title: Re: Harvoni Side effects
Post by: Momof3 on February 15, 2015, 11:21:33 am
I am on day 5 and am doing great. I wake up feeling rested I have never EVER felt that way in my entire life. I had a headache on day 3 but I didn't get a good breakfast in that morning so I think that could of been why. I have 3 kids ages 6,2, and 8 months and have no problems so far. I am taking everyday 1 at a time!
Title: Re: Harvoni Side effects
Post by: Rod on February 15, 2015, 11:36:47 am
Right this moment i feel pretty good actually so its good to see and feel it working!
Title: Re: Harvoni Side effects
Post by: Lynn K on February 15, 2015, 08:09:33 pm
Hi Rod and welcome
I am just finishing week 13 of Harvoni with Ribavirin added 4 weeks ago. I have 11 weeks to go on treatment.

I wasn't having any trouble with sides to Harvoni but since adding the riba been having more and more tiredness due to my low hemoglobin from the riba.

Good luck on treatment
Title: Re: Harvoni Side effects
Post by: Rod on February 15, 2015, 08:18:56 pm
Thanks Lynn...good luck on your treatment as well!
Title: Re: Harvoni Side effects
Post by: mario555 on February 15, 2015, 09:34:56 pm
Momof3. Good luck with your treatment. It must be hard to keep up appearances when you have to take care of small children. My best wishes!
Title: Re: Harvoni Side effects
Post by: Momof3 on February 16, 2015, 02:19:03 am
Thanks Mario! I have pretty much set aside these 2 months to strictly taking care of me and the kids (with help of needed). I am limiting things planned to a day to day basis! It's actually kind of fun just going with the flow vs having practically 2 weeks planned out daily! The kids still have their extra activities and my oldest has school but other than that it's going to be as stress free as I can make it! I am prepared for good days and of course the bad ones too! But I am dealing with "today" that's it. I am keeping my anxiety of the what ifs away! But so far it's going good! I am surprised! I really had so much fear of the unknown and health issues has always put me in a funk so just putting all my energy into myself and my kids. I feel great ful for this opportunity to treat with the new meds. When I considered treatment before it scared me to death! I really am speechless when it comes to hearing stories of what people have gone through to fight this disease! 2015 will be a great year in this battle!!! Here's to the CURE!
Title: Re: Harvoni Side effects
Post by: Katie on February 16, 2015, 02:43:12 am
Great attitude Momof3!  Welcome!  This forum will be very helpful and supportive for you.

Good luck and enjoy your children.  They'll keep you busy and your treatment will fly by.  We are all so fortunate to have the Harvoni breakthrough available to fight this alien virus so we can get on with our lives.  I feel very blessed!

Katie
Title: Re: Harvoni Side effects
Post by: kate0b1 on February 16, 2015, 06:25:36 am
@rod, yes i am on harvioni for 12 weeks i am in week 9 and am soo ready to be done, i don't usually wish away my days but i kinda am about this  ;)

kate
Title: Re: Harvoni Side effects
Post by: Mike2 on February 16, 2015, 07:34:20 am
Hi All,
Just took my first dose of Harvoni. Have no idea what to expect but I do plan to do my normal routine which means work, play tennis and exercise. Let me know your thoughts I'm a little nervous.
Title: Re: Harvoni Side effects
Post by: Rod on February 16, 2015, 07:37:55 am
I hear ya kate. Week 9? Your almost there. Keep your head up...it will be over before you know it. Im on day 4 and i wish i was at week 9
Title: Re: Harvoni Side effects
Post by: Rod on February 16, 2015, 07:40:05 am
Welcome Mike...dont be nervous...this aint nothing. Im on day 4 and already feel better
Title: Re: Harvoni Side effects
Post by: Tommync11 on February 16, 2015, 09:37:28 am
Hello everyone,

I am on day 16 on Harvoni. Had my two week labs thursday waiting to hear results other than few headaches little fatigued in the afternoons. I feel normal ! with this being said i hope its working ? i don't take any meds,don't smoke,My diagnoses 3 years ago was high inflammation minimal scarring. I am 45  athletic,work lifting houses.Don"t know if this all plays a part in why the harvoni is not affecting me with crazy sides? could someone elaborate?

Thanks
Tom
Title: Re: Harvoni Side effects
Post by: Tommync11 on February 16, 2015, 09:42:00 am
Hi Rod,

Thought i would tell ya i've been flooring, lifting houses for twenty years!! wish your treatment the best :) stay positive speak no negativity :-X and all will be well.JMO

Tom
Title: Re: Harvoni Side effects
Post by: Rod on February 16, 2015, 10:17:18 am
Thanks man. I really appreciate it. I too have minimal scarring, but i have no idea how long ive had it. I was diagnosed and kinda freaked out but i do see hope. Day 4
Title: Re: Harvoni Side effects
Post by: texasgal on February 16, 2015, 10:28:59 am
I started Harvoni 11 days ago, having upset stomach, heartburn & light tan colored stools for 4 days now no matter what I eat. Drinking a lot of water. I feel like that's not normal & I'm going to call GI today. if I can't get an appointment, I don't know what I can do. Any advice would be helpful.

                                          Thanks, Texasgal
Title: Re: Harvoni Side effects
Post by: Amj1951 on February 16, 2015, 10:39:38 am
Hello everyone,

I am on day 16 on Harvoni. Had my two week labs thursday waiting to hear results other than few headaches little fatigued in the afternoons. I feel normal ! with this being said i hope its working ? i don't take any meds,don't smoke,My diagnoses 3 years ago was high inflammation minimal scarring. I am 45  athletic,work lifting houses.Don"t know if this all plays a part in why the harvoni is not affecting me with crazy sides? could someone elaborate?

Thanks
Tom

Tom you sound like me and many others on here. I really spent many days wondering if they sent me sugar pills because after the first few days.. I have no side effects! Just tons of energy!! One thing I guess was a side effect was with all the energy, I wasn't sleeping as well. I would wake at like 3-4-5am and be wide awake all day. I did not like this. I am now starting my 3rd week of my 2nd bottle and I am back to sleeping normal so I guess that was kind of a side effect. Who knows what next month will bring, but I say bring it on!!

Lynn made a comment once she felt 'boringly normal' and that is really how I feel too. I think... we think with this powerful drug we should be sick or something with side effects, but I feel that is part of what makes it so wonderful. Its working and its easy for most. And of course when the doctor said I am undetected.. well the sugar pill theory went out the window!! : )

Drink lots of water, think positive and look forward to picking out that shiny new toothbrush when they say the magic words... 'You are undetected'.

Some of the sweetest words in the world!! : )
Meredith
Title: Re: Harvoni Side effects
Post by: Amj1951 on February 16, 2015, 10:42:44 am
I started Harvoni 11 days ago, having upset stomach, heartburn & light tan colored stools for 4 days now no matter what I eat. Drinking a lot of water. I feel like that's not normal & I'm going to call GI today. if I can't get an appointment, I don't know what I can do. Any advice would be helpful.

                                          Thanks, Texasgal

Texasgal, I am sorry your having some problems but hopefully they will pass but I agree.... call your doctor. Make sure and tell them what's going on and for myself, if I don't get the answer I want... I call back!! Maybe show up at the door.  : )

BTW.. I am in Dallas!

Meredith
Title: Re: Harvoni Side effects
Post by: hepcondor on February 16, 2015, 10:50:05 am
Good Morning,

Rod,
I sell flooring so I probably have it a little easier. I'm on day 12 and it's getting easier everyday. My biggest complaint now is I have joint issues with my lower back and knees so I pray you that doesn't come up for you.
I do have blurred vision and sometimes I seem to have a little trouble driving so be careful making those "cuts".
Just wanted to wish you and Momo and everyone the best!!
Title: Re: Harvoni Side effects
Post by: hepcondor on February 16, 2015, 10:52:07 am
Nice post Meredith!!

Houston here

Philip
Title: Re: Harvoni Side effects
Post by: TerryLF on February 16, 2015, 11:33:53 am
I would just like to thank everybody posting here. I am new to Harvoni. I just took my first dose at 9 A.M. today, 02/16/2015. I've know for a little over a year and a half that I have Hep C 1b. I went to an emergency room in July 2013 with swelling in my legs and they found that I had cirrhosis, which they determined was cause by Hep C. I had no idea before that, I was one of those people who didn't go to a doctor on a regular basis, to say I was shocked would be an understatement. I've lost a few friends to this disease over the years and never dreamed that I had it. I have to have had it since at least the mid-80s in my estimation. I am now an hour-and-one-half into treatment. I wanted to come here and see what side effects people had been experiencing. My doctor didn't want to give me the Interferon and Ribavirin because of my liver damage, and I was turned down for the Sovaldi, after quite a few ups-and-downs, I was approved for Harvoni. As I said, I appreciate all the input here, and will stay in touch and try to relate my experience as it happens. I am just extremely relieved to finally be starting treatment.
Title: Re: Harvoni Side effects
Post by: Rod on February 16, 2015, 11:45:02 am
Welcome Terry. Im on day 4 and feeling great!  More energy! Side effects arent bad if any at all.
Title: Re: Harvoni Side effects
Post by: Amj1951 on February 16, 2015, 11:46:44 am
Thanks Philip!! It is a small world we live it : )

TerryLF, Think positive and remember it really is all in the water.. at least I think so. Drink half your weight in ounces and it helps so much plus its good for you. EX. if you are 100 pounds drink 50 ounces of water. I hope your like most and experience no or only a few side effects, but no matter what just remember its only for a very short time in the scheme of things and its going to be so worth it!!

I just got off the phone from ordering my 3rd and final bottle of pills. They will be here Friday and its so exciting!! :)

Meredith
Title: Re: Harvoni Side effects
Post by: Rod on February 16, 2015, 11:47:37 am
Hepcondor,

I heard drinking lots of water helps with joint pain etc...
Title: Re: Harvoni Side effects
Post by: Lynn K on February 16, 2015, 12:12:56 pm
Hi Tommy

Lifting houses huh are you faster than a speeding bullet too lol?

Anyway as far as sides most just have the mild headaches and that's about it some do have a rougher go of things but I guess you are in the majority who feel like they are taking a vitamin or a sugar pill.

Good luck my you maintain minimal sides
Title: Re: Harvoni Side effects
Post by: TerryLF on February 16, 2015, 12:32:52 pm
Thanks Meredith and Rod, I am very excited about starting treatment. When my doctor told me he was going to prescribe Harvoni, he said I should be excited, I had to tell him that I would be excited when I actually was approved having been denied Sovaldi. So today, I am officially excited.
Title: Re: Harvoni Side effects
Post by: Rod on February 16, 2015, 12:36:55 pm
To tell you the truth Terry i cant quit smiling!
Title: Re: Harvoni Side effects
Post by: Momof3 on February 16, 2015, 12:43:57 pm
I totally get that feeling of is this really doing something? I feel like I am taking a vitamin everyday that's it!
Title: Re: Harvoni Side effects
Post by: Rod on February 16, 2015, 12:56:11 pm
Its doing something momof3....its healing you
Title: Re: Harvoni Side effects
Post by: Ruthie on February 16, 2015, 01:06:26 pm
I started Harvoni 11 days ago, having upset stomach, heartburn & light tan colored stools for 4 days now no matter what I eat. Drinking a lot of water. I feel like that's not normal & I'm going to call GI today. if I can't get an appointment, I don't know what I can do. Any advice would be helpful.

                                          Thanks, Texasgal

I'm with Meredith, call them until they return your call. For the nausea, ask them for Zofran or phenergin for it. That is a known side effect. They want to do everything they can to keep you on the Harvoni. And talk to them about the heartburn.

Another TX gal here-Georgetown
Title: Re: Harvoni Side effects
Post by: nicole_1234 on February 16, 2015, 04:11:03 pm
Ugh I'm on the last week of this. I'm so over it. My mouth is sore, I had some dark chocolate last night and couldn't sleep. Took me till noon to get going. Sometimes the finish line is the hardest. I really hope I bounce back quickly when medication is over and there's not a ton of residual side effects.

Title: Re: Harvoni Side effects
Post by: Lynn K on February 16, 2015, 04:20:54 pm
The chocolate could have been what made it hard to sleep

http://www.nytimes.com/2009/01/13/health/13real.html?_r=0

Chocolate contains caffeine, as many people know, but in varying amounts depending on the type. A 1.5-ounce Hershey’s milk chocolate bar, for example, contains nine milligrams, about three times as much caffeine as a cup of decaffeinated coffee. But a dark chocolate Hershey’s candy bar has far more: about 30 milligrams. That is the same as a cup of instant tea, and slightly less than a typical cup of brewed tea, about 40 milligrams.

In other words, a dark chocolate dessert, eaten late enough, might leave you counting plenty of sheep.

And chocolate has other stimulants. One is theobromine, the compound that makes chocolate dangerous to dogs and cats because they metabolize it so slowly. Theobromine, which increases heart rate and causes sleeplessness, is found in small amounts in chocolate, especially dark. The National Sleep Foundation recommends avoiding chocolate — as well as coffee, tea and soft drinks — before bedtime
Title: Re: Harvoni Side effects
Post by: Katie on February 16, 2015, 04:29:01 pm
Hi Nicole...We Can and Will Do it...We Can, We Can, We Can!! My teeth hurt last week but are doing alright now.  Also my gloom and doom lasted 2 weeks (9 & 10) and then a couple days ago I perked up again.  I am SO glad for that as I had to rip some trim on the table saw and get it all sanded and stained this weekend.  The carpenters are back and I am in a much better mood.

As for chocolate....love it but I can't tolerate any caffeine after about 2:00 in the afternoon and can only drink decaf coffee even in the am.  I've been that way for years.  So I have my special treats after lunch and if I need something at night I have high fiber cereal with my wild berries out of my freezer or a PBJ.  Both satisfy my sweet tooth cravings.

I am happy it is coming to and end but also very anxious about what the tests will show.  I just know I've done all I can so it is in Harvoni's hands and I hope it is getting the job done. 

So hang in there sister!  The 25th is right around the corner!

Katie
Title: Re: Harvoni Side effects
Post by: concerned father on February 16, 2015, 05:00:47 pm
I am happy to report that my 20 year daughter who was infected at birth by her biological mother has decided to go ahead with the Harvoni treatment.  She will be meeting her doctor on March 2nd to determine if it will be an 8 or 12 week treatment.  I want to thank the people on this forum for their advice on how to convince her to get the treatment.  I will keep you up to date on her progress.
Title: Re: Harvoni Side effects
Post by: Katie on February 16, 2015, 05:27:44 pm
That is GREAT news!  Keep us posted and encourage her to join this forum or at least visit it!  Good Job. Dad!
Title: Re: Harvoni Side effects
Post by: mario555 on February 16, 2015, 05:59:13 pm
To concerned dad. If you remember I voted "no" when you asked our opinion. I remain on my position. Why all of a sudden rush it after waiting 20 years? It might be a good idea to wait and see what happens with us! We will start hearing news about the efficacy of the pills in 2-3 months from the people on this forum. Why not wait a few months more? But there again, what would I do if it was my daughter??
Title: Re: Harvoni Side effects
Post by: anniemybaby on February 16, 2015, 06:12:08 pm
I'm on day 29 of treatment just had my 4 wk blood test will have results by the end of week side effects are diminishing no more headaches still get really tired can't wait to here the magical word "undetected" :)
Title: Re: Harvoni Side effects
Post by: Mugwump on February 16, 2015, 08:17:37 pm
I am happy to report that my 20 year daughter who was infected at birth by her biological mother has decided to go ahead with the Harvoni treatment.  She will be meeting her doctor on March 2nd to determine if it will be an 8 or 12 week treatment.  I want to thank the people on this forum for their advice on how to convince her to get the treatment.  I will keep you up to date on her progress.

Thank you from a dad who would have dealt with this the same way you did. Good job!
Title: Re: Harvoni Side effects
Post by: atomic dog on February 16, 2015, 08:47:01 pm
Day 1, Harvoni: Initially felt a bit anxious, slight headache, light sensitivity, minor diarrhea, my blood sugar plunged (I'm Type II diabetic) and had to hustle to get the numbers back up. Nothing I couldn't handle. Drinking lots of water. I feel a bit tired this evening. Blood work scheduled later this week. One down, 83 tablets to go.
Title: Re: Harvoni Side effects
Post by: Katie on February 16, 2015, 09:33:40 pm
Atomic Dog (love the name!)

The first couple days I had some weird stuff happen and then it all went away or mellowed out.  Being diabetic be sure you monitor that closely.  Congratulations on starting the path to a Hep C FREE life.  Entering the "unknown" is sure to cause some anxiety.  I bet all of us cringed a bit with that first pill not really knowing what to expect.  Turns out, it is a pretty easy cure with the side effects being very manageable and experiencing that you can relax some. 

One thing that happened to me was I felt great (almost giddy and too happy) for the 1st 8 weeks and then week 9 &10 I went into gloom and doom and horrible fatigue (like the old days).  The past couple days have been good and I feel almost normal (whatever that may be)  HA!   I am relieved to have my sense of humor and relaxed attitude back as I was getting a bit worried that something was going wrong.  So that being said, there can be ups and downs and I wish you all ups!

Enjoy your evening and do something nice for yourself!

Katie
Title: Re: Harvoni Side effects
Post by: atomic dog on February 16, 2015, 09:43:39 pm
The encouragement is much appreciated.
Title: Re: Harvoni Side effects
Post by: Katie on February 16, 2015, 09:51:33 pm
Hang in there Annie!  You are doing remarkably well and glad things have improved for you.  Me too!  I am back to feeling good again!  YAY!

Katie
Title: Re: Harvoni Side effects
Post by: concerned father on February 16, 2015, 10:04:16 pm
To concerned dad. If you remember I voted "no" when you asked our opinion. I remain on my position. Why all of a sudden rush it after waiting 20 years? It might be a good idea to wait and see what happens with us! We will start hearing news about the efficacy of the pills in 2-3 months from the people on this forum. Why not wait a few months more? But there again, what would I do if it was my daughter??

Hi Mario

I remember your opinion and I want to thank you for submitting it.  When my wife met her doctor, she asked her if they were working on a vaccine for hep c.  Her answer was no because this virus will no longer exist in 15 years because of this medication.  Her treatment will not start for at least another 4 months due to paperwork and approval.  We are also from Canada and I'm sure you know the delays associated with the approval process.
Title: Re: Harvoni Side effects
Post by: mikeyman on February 17, 2015, 09:50:00 am
Hey Paulette, what is your virial load and ast/alt levels on your 12 week blood work?
Keep the faith,
Mikey
i read there is a new one in the works that is 100%
You still have another 12 wks? Hammer it!
Title: Re: Harvoni Side effects
Post by: TerryLF on February 17, 2015, 10:47:04 am
Just took my second dose 45 minutes ago. I didn't feel bad my first day yesterday, but my body just felt kind of weird. I have diabetic neuropathy and bad back so can't say any joint pain was from Harvoni. When I tried to sleep I got very cold, shook underneath the covers and had real trouble waking up and shivering. I also had some very vivid and strange dreams but haven't read anything on here or Gilead site that says that is a side effect of Harvoni, probably just my mind carrying on, it has been a very stressful time getting to this point with denials and waiting, then final approval. Feeling fine this morning though I'm probably going to lay down a while after breaking the fast. On to day two.
Title: Re: Harvoni Side effects
Post by: atomic dog on February 17, 2015, 10:59:22 am
Also on Day 2, slept pretty well, I know what you mean about vivid dreams and such. Overall, Day 1 was fairly smooth, except for my glucose levels dipping very low (also diabetic) and tiredness. I'll keep closer watch on the glucose. Onward and upward . . . .
Title: Re: Harvoni Side effects
Post by: nicole_1234 on February 17, 2015, 11:24:22 am
I'm not sure what's going on with me. It's the second night in a row I haven't been able to get to sleep until 4 AM. My body aches and I am anxious. My joints especially in my neck are cracking and sore, so is my mouth. And I feel like I have some type of cold sniffly and congested.

Anyway one more week to go. It's really not that bad I think I'm just over it now since I'm close to the finish line. Can't wait!
Title: Re: Harvoni Side effects
Post by: Katie on February 17, 2015, 12:21:42 pm
Hey Nicole...I had the gloom and doom for 2 weeks and then a few days ago I woke up feeling good.  I ached all over, horrible fatique but now see it as just part of the healing cycle.  Things seem to come and go with this treatment. Just so our virus goes and stays GONE.   >:(


We are entering the home stretch, my friend.  Exciting and scaey and I can't think about it too much as I get anxious!

Feel better and rest!

Katie
Title: Re: Harvoni Side effects
Post by: Islandgirl on February 17, 2015, 12:50:55 pm
Nicole and Katie,
Once again, your're describing what's going on with me too. 

I've posted little these last couple of weeks or so due to the fatigue and doom/gloom issues, aches, severe muscle cramps in both legs, etc....  Yes, we're on the home stretch and I should be feeling more upbeat... I've scheduled a massage for the 25th/last pill day as a treat to myself :)  I did so well for so long that I never expected the last part to be like this and I guess it threw me for a loop :)  Gotta buck up here.  Keep focusing on this damn virus staying GONE!! 

Thanks for everyone's comments and encouragement to us all.  I've been reading posts and apologize for not posting back like I used to.  Keep up the good fight and remember the water, don't backslide like I did and realize that's what caused the horrendous muscle cramps.  SVR12 (8 or 24), here we come!  ...Islandgirl 8)
Title: Re: Harvoni Side effects
Post by: Katie on February 17, 2015, 12:58:04 pm
Thanks Island Girl.  10 days ago I thought something went wrong, because I too had felt SO good for 8 weeks.  I think we are just saturated with the meds and it is kicking the alien monster's butt.  I am doing MUCH better now, and actually, it was after I had an acupuncture treatment where she said my energy was really blocked, and one leg was over an inch shorter than the other one.  Totally out of wack.  My energy is flowing now and I am feeling SO much better, so enjoy your massage and throw away that gloom and doom...it is an unfriendly place.  The closest I've ever been to depression.

Katie
Title: Re: Harvoni Side effects
Post by: Islandgirl on February 17, 2015, 01:11:56 pm
Thanks Katie!  I also have an appt with my chiropractor (not the "bone cracking" kind) and I bet he finds something similar to your acupuncturist with you.  He and my massage therapist share patients, though they are separate businesses in separate locations, but it's a good combo for me.  Haven't found an acupuncturist here yet that I've felt confident to try... 

I'm glad you're feeling so much better and, yes, that doom and gloom is an unfriendly place - hard to kick it too 8)  ...Islandgirl
Title: Re: Harvoni Side effects
Post by: hepcondor on February 17, 2015, 01:42:53 pm
Congrats Islandgirl, Nicole, Katie...Almost home!!

Nicole I have major issues with my joints. I had lower back surgery 6 years ago and have felt great until I started this medicine. Now all of the sudden I have trouble getting out of my chair because of the stiffness and pain there. Most of my other joints are a little painful and cracking for sure. I really believe it will go away when we are done this stuff and being cured is so worth it.

Yesterday was day 12 and the hardest for me. After taking the pill around 5:00 I was eating dinner with my family around 6:00 when I became very hyper for about 5 minutes and then got real dizzy and came down like a rock being thrown off a cliff. Couldn't keep my eyes open, body cramped up, got grumpy, and then just had to crash.
Had vivid dreams of a child's jingle that I made up and couldn't get out of my head..weird.
Slept pretty good so today feeling pretty good. A little anxious about today's reaction though.
Thanks for being there everyone!
Title: Re: Harvoni Side effects
Post by: Islandgirl on February 17, 2015, 02:07:28 pm
"HC" Philip, Thanks, and I hope you have a better day and evening.

I have an ankle that was broken many years ago and the older I get, the more trouble I have with it.  No surgery will improve it and I'd be risking the mobility I have.  With our Harvoni treatment, it's really giving me grief, as are my other joints - somewhat like what you're experiencing with your joints too.  Seems I read that others  who completed treatment said it cleared up for them.  Hope that's true for all of us.  Wishing you the best (everyone else too)...Islandgirl
Title: Re: Harvoni Side effects
Post by: nicole_1234 on February 17, 2015, 03:41:15 pm
Thanks for all the comments everyone. It's really hard when my nurse tells me no one has any side effects and then all these things are going on with me and I feel like a wimp. Knowing it's happening with others makes me hopeful its just the medicine and it will soon be over along with the side effects. It wouldn't make sense that something powerful enough to kick out the hepatitis wouldn't have any effect on the body.

I'm in sunny California, but secretly wishing I was stuck in the snowstorm in Nashville with some of my friends where I could have a few "snow days" and just stay indoors and drink hot cocoa and watch Netflix. An excuse to just not go anywhere.  Luckily I have a pretty light work week and only one week left of treatment. I'm exhausted.

I think I took on too much during treatment. More than even a normal healthy person would be able to do. But that's just how I choose to deal with this. Keep moving as if nothing's happened, get as much done as possible, pretend I am superhuman. It works until it doesn't and then I am just burnt out and struggling to keep up with myself.

Title: Re: Harvoni Side effects
Post by: Katie on February 17, 2015, 04:08:58 pm
We are so much alike Nicole.  This remodel was a mistake to do at this time, but it is coming together.  I have been pushing myself too and can hardly walk today.  This old body is rebelling!  This coming week I have to paint, and stain some more trim and then organize all the crap sitting in the living room.  Being fed uyp with this mess, will make it easier to get rid of things though, and my bedrooms will look so nice, so it will be worth it in the long run!

Breathe Deep and do something nice for yourself!

Katie
Title: Re: Harvoni Side effects
Post by: MEG on February 17, 2015, 04:37:30 pm

Now I just feel blah. I have to believe that's the nasty bug fighting and losing the battle against the Harvoni

Katie, so you have the bug too. Are you doing anything different from your normal routine to fight the cold?

Hope you feel better soon.
Title: Re: Harvoni Side effects
Post by: MEG on February 17, 2015, 05:05:26 pm
Hi All, I've been going through this entire thread and I want to thank every one of you for sharing. It's immeasurably helpful!

I'm feeling less tired today, less cold symptoms. But taking it easy as I've relapsed into severe fatigue several times this winter since I got the first cold of the season.

I'm yearning to find out how I feel without this cold interfering.

All those house projects! Oh my. How inspiring!
Title: Re: Harvoni Side effects
Post by: Katie on February 17, 2015, 05:24:08 pm
Hi Meg...So sorry you got a cold...how miserable and hard on your body fighting two things.  I don't have any bug...other than the alien virus and my fatigue pretty much disappeared a few days ago, but for about two weeks (my 8th & 9th) I really fell into a funk and my fatigue was as bad as I ever remember it.  Weak and agitated and unsociable. So unlike me and even worse than before the treatment!  I have come to believe the treatment has cycles and as my immune system kicks in and my liver starts to actually detoxify my body there are some subtle and some not so subtle changes.  For instance, my urine got a really strong, pungent odor for several weeks, before I went into my funk.  That is gone now.  So who knows how things are affected.  When I realized that my liver was fighting the virus and unable to do the job it was suppose to do, it all started making sense.  One real benefit is my skin is much smoother and finer textured.  My pores had gotten noticeably big and I tried EVERYTHING, and nothing worked.  All of a sudden, the were GONE!  Weird.  but if you are filled with toxins and now they are being eliminated, it makes sense to me.

This is just my opinion, but it is how I see it.

Please feel better, and take your vitamin C and stay hydrated.  Flushing your sinuses out with salt water will really make a difference if you are experiencing lots of mucus.  You don't want to end up with a sinus infection where you need antibiotics.

Rest and stay hydrated.

Katie
Title: Re: Harvoni Side effects
Post by: MEG on February 17, 2015, 08:24:30 pm
Katie, thanks so much for your comforting note. It's strange how the fatigue is all over the place?

What was your fatigue level like preHarvoni?
Quote
One real benefit is my skin is much smoother and finer textured.  My pores had gotten noticeably big and I tried EVERYTHING, and nothing worked.  All of a sudden, the were GONE!  Weird.  but if you are filled with toxins and now they are being eliminated, it makes sense to me.

WOW! That is awesome.  I found that after age 45(virus in my body for 30+ years) that I aged more quickly.  As a young adult and well into my early 40s people uniformly thought that I looked much younger. But not any more. I'd not connected it to the hcv. 

Indeed, this evening I am feeling better. Took my dog out for a real walk and did grocery shopping. I'm dying to get on my bike but I have to be so careful about the cold relapsing.
Title: Re: Harvoni Side effects
Post by: nicole_1234 on February 17, 2015, 08:32:45 pm
Oh indeed! Liver is very much connected to how the skin looks. If you can't detox properly, your skin will show it. Funny, I noticed my skin looking better too!
Title: Re: Harvoni Side effects
Post by: Lynn K on February 17, 2015, 08:36:17 pm
Dunno people are surprised when I tell them I am 56 they think I am in my mid 40's. My whole life I have been taken for about ten years younger than I am. It used to bother me but not so much now lol  :)
Title: Re: Harvoni Side effects
Post by: MEG on February 17, 2015, 09:35:47 pm
Well Lynn and Nicole, woe be I !!!

I've done so much research over the years--including CAMs and read that skin takes a hit when the liver is under-functioning.

But my brain did not connect those dots re: why I was now looking my age...LOLOLOL...HCV brain is sumthin' else, eh?

I really can't wait to see my skin glowing again!
Title: Re: Harvoni Side effects
Post by: SunIsOut on February 17, 2015, 09:38:54 pm
Hello friends,
I posted sometime back when I was working through the insurance appeals. My Dr. based on FDA guidance requested 24 weeks and was turned down and appealed.  This time they approved 12 weeks and I got the treatment delivered today by Fedex.  I go to John Hopkins tomorrow for pre-treatement review and will take my first pill tomorrow night.

The Dr. decided to wait on the third appeal and go ahead and get started.  Here are some of my labs;


I am looking forward to getting this behind me. I too at 59 yoa am active and workout at the gym at least once a week with swimming. Today it was shoveling snow.

I have tinnitus that is constant.  I understand the the HCV being blood oriented is not just local to the liver and that my tinnitus could improve from treatment.

I was cautioned to not take Tylenol or Ibuprofen at all.  I have a balanced diet with as much organic produce as we can find.

So here we go folks!  :)
Title: Re: Harvoni Side effects
Post by: atomic dog on February 17, 2015, 10:38:29 pm
Day 2, and after some rough stuff yesterday today was a cake walk--sort of like taking an aspirin (as some folks have said) with negigible side effects (almost transparent). Hope it stays like this.
Title: Re: Harvoni Side effects
Post by: Ruthie on February 17, 2015, 10:55:15 pm
Congratulations, SunIsOut! I'm so happy for you to finally get to begin treatment!

Since you cannot take ibuprofen or Tylenol, drink lots of water if you get a headache. Also, the caffeine from black coffee helps immensely.

Good luck on your journey!
Title: Re: Harvoni Side effects
Post by: Ruthie on February 17, 2015, 11:05:56 pm
I'm in need of encouragement. The sores in my mouth and throat are getting worse. I can barely speak now. The ones on my tongue are annoying, but fine. The ones on my throat are painful and make me feel as though I'm choking.

My GP has tried everything he can think of to prescribe to coat and protect the area, but Medicare has rejected them all. I've made homemade herbal cough drops for it. They help, unfortunately that's short lived. I'm drinking a lot of water and hot peppermint tea.

I don't know how much longer I can handle this. I'm miserable. 10 pills down, 46 to go.
Title: Re: Harvoni Side effects
Post by: Katie on February 17, 2015, 11:37:04 pm
Ruthie,  I am SO sorry to hear that. Absolutely miserable.  You have probably done this but gargling with warm salt water can help and it aids in healing.  There is also a spray that numbs your throat.  Cut back on acidic foods such as citrus fruits and Vit C. 

Are you sure you don't have strep throat?  That's what it sounds like.

I can't think of anything else...wish I could be more help.   :-[

Katie
Title: Re: Harvoni Side effects
Post by: Mugwump on February 17, 2015, 11:53:23 pm
I'm in need of encouragement. The sores in my mouth and throat are getting worse. I can barely speak now. The ones on my tongue are annoying, but fine. The ones on my throat are painful and make me feel as though I'm choking.

My GP has tried everything he can think of to prescribe to coat and protect the area, but Medicare has rejected them all. I've made homemade herbal cough drops for it. They help, unfortunately that's short lived. I'm drinking a lot of water and hot peppermint tea.

I don't know how much longer I can handle this. I'm miserable. 10 pills down, 46 to go.
If it persist and does not effect your ability to breath maybe my mothers old remedy of taking an aspiring tablet and crushing it then dissolving it in  warm water might help reduce the swelling in the sores. DO NOT swallow the liquid gargle with it for as long as you can then the acetyl salicylic acid act locally and very little will  be metabolized in the liver. The anti inflammatory effect should help at least temporarily ease the discomfort.

This way the use of a mild anti- inflammatory should not be dangerous. Check with your doctor to see if this would be OK, but remember this is only something to ease the discomfort while your body deals with what ever is causing the problem. And with anti-inflammatory drugs more is not better in most cases especially if you have other health issues like the damage done by HCV to deal with. 

I really hope your unfortunate condition clears soon. If your GP cannot get a handle on the cause then an eye ear nose and throat specialist might be the only real option. I would also check for any possible causes of airborne contamination where you might be being exposed to mold spores for long periods of time.  Especially if you are living in a house where there is persistent water leaks in the plumbing and/or the roof. If you live in a dry house in a dry climate ignore what I just said. But this is all I can think of doing and what might be causing the problem.
 

take care and get well soon!

Eric

PS no fish today but some gorgeous pics and video of the Stamp River in morning mists with full sun. The fish are only a minor part of being in a place like that and wading a river casting a fly. Now I will sleep and dream of tomorrow and another chance to be in silence and feel alive again! 

The chance to catch a fish and be in a little slice of heaven is what really counts.  Only 3 months ago I considered giving my gear away to some young relatives so they could have some of the peace of mind brought about by fishing a river where all you hear is the song of water.
Title: Re: Harvoni Side effects
Post by: Ruthie on February 17, 2015, 11:59:25 pm
Thanks, Katie. It's not strep, the Dr checked just in case.  We found it's a rare side effect to Sovaldi.

I am gargling with warm salt water. I've tried the OTC sprays, but they don't last long
Title: Re: Harvoni Side effects
Post by: Islandgirl on February 18, 2015, 12:01:38 am
Ruthie, I'm so sorry for what you're going through.  Can your doc refer you to a specialist?  Or, what about your dentist.  A friend of mine got something that sounds like similar some years ago and her dentist prescribed something that had kaeopectate in it to help coat the areas as well as treat it.  I think her condition was connected to gum disease somehow and that her periodontist is who came up with the med.  Don't know if any of this helps, but your doc may need to refer you to someone.  Has he/she done a culture?  Honey is also soothing and a natural antibiotic.  Maybe add honey to your tea?  I'm just sort of throwing out things in the hope something might help.  I'm so so sorry.  Hugs, ...Islandgirl
Title: Re: Harvoni Side effects
Post by: Ruthie on February 18, 2015, 12:02:44 am
Eric, I was just thinking today that I may need to go to my ENT. But now I really want to go fishing...

I did take ibuprofen and it helps. I just don't want to rely on it. I'm allergic to aspirin :/
Title: Re: Harvoni Side effects
Post by: Lynn K on February 18, 2015, 01:41:36 am
Have you tried Tylenol? It is also safe for liver patients as long as less than 2000 Mg. If fact with cirrhosis it is what I am supposed to take.

Of course always clear with your doctor
Title: Re: Harvoni Side effects
Post by: Islandgirl on February 18, 2015, 08:00:25 am
Ruthie,

Good morning, I hope you are feeling a bit better and were able to sleep last night.  Have you tried extra virgin coconut oil?  Look up coconut oil for throat ulcers - a wealth of info - might be worth a try and sure can't hurt you.  You're on my mind and I'm hoping you'll find some relief/solution soon.  Sending love and healing energy :)  ...Islandgirl
Title: Re: Harvoni Side effects
Post by: Ruthie on February 18, 2015, 08:57:11 am
TY, Lynn, I will take Tylenol, too.

IslandGirl, TY for all the tips. I was able to sleep last night with ibuprofen. I've been looking into coconut oil for other things. Maybe this is a good reason to take the plunge and buy some.

I think I'm going to attempt to get in with my ENT.

I did speak to Gilead last week, and this is a known rare side effect. I just hope and pray no one else has to go through it!

And TY all for responding and trying to help me. That's what I needed the most-just to know someone is routing for me. My friends and family are trying, but they're not on Harvoni and they don't have HCV.
Title: Re: Harvoni Side effects
Post by: sunrise on February 18, 2015, 09:06:58 am
Hi Ruthie
     I was reading you thread, and just wanted to give you a hug. I know it's a tough journey. These folks here give some great caring advice. Feel better. That coconut feels great. Thank you for reminding me to eat some Island girl   8) I've  been lazy. Have a comfortable day. Blessings. Sunrise
Title: Re: Harvoni Side effects
Post by: Tommync11 on February 18, 2015, 10:33:03 am
Hey Everyone hope all is  well with all of you :) was wondering if anyone is having lower back pain? i'm day 19 on Harvoni and all a sudden my lower back area is killing me...anyone with me on this?
Thanks
Tom
Title: Re: Harvoni Side effects
Post by: nadewitt on February 18, 2015, 02:46:49 pm
I started my 24 week treatment with Harvoni 3 days ago. I went through treatment with interferon and ribaviron for 14 weeks and failed. Then I went through treatment with Incivik, interferon and ribaviron with horrible side effects and failed there. I was undetectable at 4 and 12 weeks but was hospitalized for blood transfusion and had to stop treatment. The virus came back and I advanced to cirrhosis. So far I have experienced a constant headache, some stomach and digestive problems but after what I experienced before this is nothing. I am really hoping that the mild symptoms doesn't mean the medicine is not working. I am hoping to get some feedback. My doctor doesn't plan to order any labs and won't see me for 6 weeks. What is the normal time to check for progress?
Title: Re: Harvoni Side effects
Post by: charly8 on February 18, 2015, 03:02:14 pm
Hey Everyone hope all is  well with all of you :) was wondering if anyone is having lower back pain? i'm day 19 on Harvoni and all a sudden my lower back area is killing me...anyone with me on this?
Thanks
Tom

I do a little if I am dehydrated.  I think Harvoni takes a little bit of a toll on the kidneys.  You should def. bring it up with doc.
Title: Re: Harvoni Side effects
Post by: Ruthie on February 18, 2015, 03:08:45 pm
Hey Everyone hope all is  well with all of you :) was wondering if anyone is having lower back pain? i'm day 19 on Harvoni and all a sudden my lower back area is killing me...anyone with me on this?
Thanks
Tom

I do, too, if I need to drink more water. Once I drink a couple cups of water, I'm fine. Do bring up with your Dr just in case.
Title: Re: Harvoni Side effects
Post by: nicole_1234 on February 18, 2015, 03:19:29 pm
Ruthie, when western medicine fails to help me I try eastern. Or usually combine the two. Acupuncture can help relieve inflammation and open up blocked channels in your body to allow it to heal. A good acupuncturist should also recommend dietary measures to help you. Most western doctors will tell you to take something for your ailment while an eastern doctor may tell you to perhaps eliminate things that are causing your reaction. If you can find a good one (mine is also an MD and very caring) then I think it's worth a try.

Tom, my neck and upper back have been sore and cracking. Many here have complained of achy joints on tx.

Nadewitt it sounds like you've been through a lot. I think you'll find Harvoni much easier than past treatments. And your digestion issues should improve most likely after the tx clears the virus. I cannot speak to your 6 week test as most have a 4 week, but I will take bets if you haven't cleared the virus by then you will be very close to it. Keep drinking water and eat light healthy meals.
Title: Re: Harvoni Side effects
Post by: mario555 on February 18, 2015, 03:47:12 pm
Nadewitt. Many of us have mentioned the point that if you don't have side effects, the medicine might not be working! I am also on a 24 weeks treatment (starting week 15) and have had all the same worries! Because of the length of treatment, any screw-ups you might experience will probably be 'smoothed out' and the pills will win. You might have seen the results of the studies where almost all of the patients cleared the virus after 24 weeks. So don't worry but be aware that when you feel like no side effects will touch you, they might come back with a vengeance! Anyway, this is what's happening with me.
Finally, old warriors with interferon are expecting trouble based on our previous experiences. This new medication has absolutely nothing to do with previous treatments. It works on a totally different level. So take heart and hang on
Mario
Title: Re: Harvoni Side effects
Post by: fllazylady on February 18, 2015, 05:47:09 pm
Hello Warriors,
It me Paulette. No good news on this end. Spent a week in Hospital battling high BP ever since they put me on Ribavirin to boost the treatment. I'm on week 15 still detectable. After I went on ribavirin my blood pressure was spiking put me in the hospital did stress test Catherization and now they put me back on ribavirin and my blood pressure is going out of control again Doc is changing my blood pressure medicine tomorrow getting a little weary. Has anyone else not cleared yet??
Sending you all Light n Love on your treatment...
Paulette
Title: Re: Harvoni Side effects
Post by: Islandgirl on February 18, 2015, 05:55:16 pm
Paulette, I'm so sorry to hear all you are going through.  Hope your doc gets your BP under control soon!  It can be such a tricky thing and a miserable time getting the right med and getting it adjusted properly for YOU.  Sending you light and love and healing energy right back - feel a hug too!  ....Islandgirl
Title: Re: Harvoni Side effects
Post by: Katie on February 18, 2015, 06:05:45 pm
Oh Paulette, I am so sorry to hear of all of your issues and how frightening that must be.  Some others have had their BP increase on treatment but yours sounds serious.  Seems they are going to have to revisit the side effects, especially with a combo treatment...some folks just on Harvoni also are experiencing BP issues as well.

We are on the road to a cure, and I feel all of us are the final test to set the pace for the future which will modify treatments based on our results.  Especially the disappointing ones.

Thank for sharing.  I am sure it is painful to even make a comment at this point, but know you are helping all of us face the reality that for some of us the journey to a cure may take a  while longer than expected.  I am on my final 12th week of Harvoni and a bit anxious since my VL was 59 @ 4 weeks.  That low number sounded so good at the time, but lately I wish it had been gone at that point.  I will have blood work on the 27th, but even if it comes back UD I won't be comfortable until I get a cleared report at the end of 6 months.

Know we are here for support and are all sending you healing light for your good health.  You are not alone.  Sending you BIG ((((HUGS))))

Katie
Title: Re: Harvoni Side effects
Post by: nadewitt on February 18, 2015, 06:11:32 pm
Congratulations Island Girl. Great labs!
I was lucky in that my side effects didn't come from interferon. All of the bad things were from the antivirals. Harvoni attacks the virus in a similar way that Incivek did so I was afraid of having the same kind of issues with it. I have been pleasantly surprised and hope this keeps up. I am very encouraged by all of the positive posts.
Paulette I hope you can get your problems resolved soon.
Thank you to everyone who answered my previous post.
Nancy
Title: Re: Harvoni Side effects
Post by: Islandgirl on February 18, 2015, 08:01:29 pm
Thanks, Nancy!  I have to go back and re-read my labs once an a while as I almost can't believe it's true :)

I'm sorry to read everything you've been through in your own fight!  My own symptoms were so mild in the beginning that, like you, I wondered if it was working.  It is, and as I got more med in me I began to experience more sides.  Nothing like the older meds though!  Digestive issues (smelly urine too) and some aches, muscle cramps, headache.  Amazingly, LOTS of water intake took care of most of them.  Good luck with your journey and keep us posted!

 I almost forgot - our docs seem to not all follow the same plan with regards to lab work and visits.  I had labs at 2 wks and again at 4 wks, then went to see her.  My next labs will March 25, 4 wks after my last pill, an office visit about a wk later - the September 25 or 26 and if all is good I can call for results or make an appt.  Hope that helps :)  ...Islandgirl
Title: Re: Harvoni Side effects
Post by: sunrise on February 18, 2015, 08:06:05 pm
Hi Paulette
I want to give you a big hug. I hope you feel better. I had bp issues on S/O tx.
 
Title: Re: Harvoni Side effects
Post by: nicole_1234 on February 18, 2015, 11:17:48 pm
So sorry Paulette for what you're going through. Hang in there. Sending healing thoughts to you and prayers for UND on your next test.
Title: Re: Harvoni Side effects
Post by: fllazylady on February 19, 2015, 08:17:51 am
Nicole I can never have enough people praying for me I am just feeling a little defeated lately and overwhelmed with my boyfriends stroke. He usually is the one that takes care of most things so there's been a lot of added task and stress do you think that the stress could have something to do with me not clearing.. I was hopeful at the beginning of this treatment. I'm not giving up by any means my friends have always said that I am a fighter and I am strong I just been feeling a little weak lately. Thank you so much for your response it means a lot to me.
Title: Re: Harvoni Side effects
Post by: nadewitt on February 19, 2015, 08:52:10 am
Paulette I am so sorry for what you are going through. It is so easy to get discouraged when you don't feel good. I have seen several posts where ribaviron has been added to the harvoni. That really scares me because I had such bad side effects when it was combined with incivek and since I have failed treatment twice I can glimpse it in my future. I will be watching your progress with prayers that everything will finally get better and you will get rid of this virus. Is your boyfriend doing better? My prayers are with both of you.

I have another question. Did anyone else experience weight gain since being on harvoni? I am on a pre-diabetic program that monitors my food, activity and weight and since I have been taking the pills (only 4 so far) I have gained 3 pounds without changing anything else.
Title: Re: Harvoni Side effects
Post by: Islandgirl on February 19, 2015, 08:57:26 am
Paulette, you are definitely in our thoughts and prayers.  Even us fighters have our times that it just all seems like too much.  And your boyfriend's stroke would certainly tip the scales. 

My boyfriend of many years had a heart attack this last summer and wound up with two stents.  We walked on the beach that morning, he took his normal 5 mile bike ride that afternoon and shortly after "just wasn't feeling right" - I got him to the ER "just in case" (faster than an ambulance could have gotten here) and they told us I literally saved his life.  That made a huge impact on us as I know your situation did with you guys.  It's so scary, and it's hard to let go of the fear when any new twinge crops up.  And a stroke with the added care must be even worse for both of you.  I'm so very sorry. 

When a guy is the "take care of things" kind of person it's even more scary since it points up that we may not be able to depend on each other they way we always thought we could.  It took me a long time to get comfortable with him taking care of so much as I was/am the take charge and fix it person in my family - kind of suspect you were too - and to come up on the new reality of what can happen, it's rude awakening....  Hard for him too.  God bless you both.

I don't know if the stress impacted your tests but it sure does a number on us.  I pray you'll find UND on your results soon!  Be good to yourself, deep breaths, and know that we all love you and are rooting for you.  Hugs, ....Islandgirl

PS, Nancy (you were posting while I was writing), I've actually lost weight without trying!  I do crave sweets more than usual so am not happy about that...  Hopefully this will level out for you.  Hang in there ...Islandgirl
Title: Re: Harvoni Side effects
Post by: Sixgolds on February 19, 2015, 11:31:17 am
So, my Harvoni journey began at 7:30 pm on Jan 2.  I do try to keep to that time for each daily dosage...sometimes remember 2 hrs later but mostly close to 7:30.  After a week felt like I was been strangled.  First thought was strep (at 67 I know it's more rare) but husband could see nothing in my throat.  Then came the low back pain, OMG ouchies!!!!  the extreme fatigue and headaches began almost immediately!!!  I was a mess!  After a week of little sleep, little movement and lots of pain I was taken to Urgent Care where a strep test was done as part of their intake protocol when throat pain is present.  Doc was quite surprised result was positive for strep!  10 days antibiotic cleared it up.  Back pain and etc persisted but now involved mid back as well as lower.  Just laid around and munch on trail mix with little real food.....it's my "go to" food when I'm feeling miserable.  Of course, I gained 10 pounds in a couple of blinks of my eye...no exercise, poor eating...didn't help my mood.  Wasn't depressed, really, but sure was miserable.  Now, I'm halfway thru the treatment.  Back to mild "in home walking, 30 minutes a day, no more trail mix, healthy eating and more water intake.  I can honestly say I'm feeling a whole heck of a lot better!!!!!  Duh!!!!  It takes work but last week's blood work showed liver enzymes within normal limits for first time in 25 years!!!  Liver biopsy a few year ago showed F2.  I'm G1, twice a relapser.  Awaiting viral load results with hopes that's lower as well.  I've stopped all supplements and vitamins.....C and D are contraindicated, I discovered on Drugs.com.  Back still painful later in the day, Ibruprophen and Aleve help.  Good luck!!!  P.S., sorry for this long posting. :)
Title: Re: Harvoni Side effects
Post by: hope4cure on February 19, 2015, 12:35:54 pm
Got the call for my 4 week lab results yesterday and they told me I was negative. My first reaction was "is that good?" and the nurse laughed and said you are exactly where we want you to be (undetected.)

Basically I now have 3 1/2 more weeks of pills/fatigue (though less often now) and then the 8 week test, then the long 12 week wait to hopefully be completely free of this!

For anyone who is having a tough time on the meds, just hang in there and hopefully in a short while you will be free of this virus.
Title: Re: Harvoni Side effects
Post by: LenFreeHepC on February 19, 2015, 12:58:52 pm
Hi there!

I am new to the thread, thank you guys for posting your experiences, it is very helpful for other people, so I decide to post my experience as well.

I'm 38, has been infected with Hep C most likely since age 8 during blood trans due to trauma (which caused splenectomy).
I live in Canada, treatment naive, last fibro scan showed F0-F1 fibrosis.
Has been approved for the Harvoni treatment, the shipment has arrivee today and I'm supposed to start tomorrow.

Will post here my side effects, hope there will not be many.
Good luck to all of us!
Title: Re: Harvoni Side effects
Post by: DD1369 on February 19, 2015, 01:01:02 pm
Hi All,

It's been awhile (way too much travel at work), and thought I'd better check in again. 

I started on a 24 week course of Harvoni back on December 4th, and just finished week 11 yesterday.  Only 13 more weeks to go!

TBH, Harvoni hasn't been all that pleasant...but way better than the many Interferon/Riba treatments I've been on over the past 20+ years (one went 72 weeks!). I've always cleared the virus, but then relapsed within 2-4 weeks.

With the Harvoni I've mostly had the stock side effects; headaches, nausea, fatigue with a dash of insomnia...but nothing like the previous treatments I've been through.

I was UD at week 4 (1st blood work), and my latest labs (2/6) are showing still UD, with ALT/31 and AST/27...so I'm keeping my fingers crossed!

It's always great to see so many good people supporting each other as we work to beat this horrible disease. Good luck to everyone...feel the positive vibes I'm sending to each and every one of you!
Title: Re: Harvoni Side effects
Post by: Bituman on February 19, 2015, 11:04:07 pm
I'm in need of encouragement. The sores in my mouth and throat are getting worse. I can barely speak now. The ones on my tongue are annoying, but fine. The ones on my throat are painful and make me feel as though I'm choking.

My GP has tried everything he can think of to prescribe to coat and protect the area, but Medicare has rejected them all. I've made homemade herbal cough drops for it. They help, unfortunately that's short lived. I'm drinking a lot of water and hot peppermint tea.

I don't know how much longer I can handle this. I'm miserable. 10 pills down, 46 to go.

Ruthie, sorry I'm so late in responding to your post.  I just now saw it.  I hope your mouth ulcers are better.  If not or if they come back I suggest you get your doctor to get a compounding pharmacy to make you some  Costanzi's Solution.  Here is a link describing it.  http://www.linkedresources.com/medical/costanzisolution.php. and here it is listed in an old UTMB formulary.  http://www.utmb.edu/rxhome/Formulary/Formulary%202009.pdf

In 1975, Dr. John J. Costanzi was my oncologist at Univ of Texas Medical Branch in Galveston. TX.  After my second round of chemotherapy I developed such a bad case of mouth ulcers that I stopped eating.  My body was already weakened from surgery and chemo. With the mouth ulcers and no food, I was dying and had to be hospitalized.  Evidently this was such a bad, yet comomon side effect from chemo, that Dr. Costanzi developed his mouth rinse.   I think it was just something he and the UTMB pharmacy cooked up in an attempt to help his patients. It saved my life.  Within an hour of rinsing the first time, I was eating.  No exaggeration, I've never felt such relief so fast. The next day Dr. C showed up in my room at the hospital and asked if I was craving anything in particular.  Being a 19 year old college student, I of course said, pizza and a beer. Later that evening, he showed up with Shakey's pizza and a 6-pack.  Not only was he a world class oncologist, but also a very cool dude. The main point is, he absolutely knew that his rinse would do the trick.  Over the years I wondered whether some drug company developed a commercial version.  Maybe someone has.  Perhaps your doctor will know or could contact UTMB's pharmacy to ask about it.  I cannot recommend it highly enough. 

Anyway, I hope you don't need it any more, but in case you do it's worth looking into.  Good luck!

Bob

PS-I called it a rinse above, but if I remember correctly, you swish it around in your mouth and then swallow it.  So you would have to make sure no adverse interaction with treatment. 
Title: Re: Harvoni Side effects
Post by: nadewitt on February 20, 2015, 08:51:12 am
I have suffered with GERD since my last Hep C treatment. My doctor put me on Omeprazole and that cleared up the ulcers in my esophagus and stomach and has kept my stomach happy for a couple of years. I can't use this medicine while on Harvoni and the indigestion, heartburn and burning in my throat have returned with a vengeance. Any suggestions? I could really use the help because this is miserable.
Title: Re: Harvoni Side effects
Post by: Deborah on February 20, 2015, 09:16:59 am
texgal, what you are experiencing is pretty normal for this drug.  you might find that the upset stomach settles down if you tweak the time when you take it.  also, it is critical that you drink a lot more water.  And a lot more and a lot more and a lot more. The water will help many things. The tan stools are also common.
Title: Harvoni Side effects and Me ...
Post by: Rexray on February 20, 2015, 11:28:53 am
Hello all, I've been lurking here on and off for some time.

Background and stats:
63 year young male
Diagnosed in the late 90's with HepC and had a biopsy with a viral load of over a million.
Recently had a sonic and catscan, all clear, no cirrhosis or scarring of any type.
Current viral load is appx 2.3 million
Low Blood platelets at <130

In general I work a 44 hour week, ride motorcycles and work hard around the house regularly, albeit I have had malaise and fatigue that comes and goes which has lingered for some years.
I really need to plan activities around my perceived energy level on any given day.
As a note, hold the comments, I am and always will be a red wine drinker, in moderation of course.

I've been seeing my liver doc at UCLA Pfleger Liver institute a few times over the past 8 years to get his opinion.
The first visit he told me I would most probably not die of HepC rather with HepC, and that I should wait for new drugs in development.
I knew even then I'd rather die a natural death than take the chemo-therapy that was available, even though my local doctors tried to get me on the bad drugs.
No thankyou.

Well here we are, and the drug is at hand. I do feel blessed.
I'm not sure what the edicate rules are on this forum about using doctor names, but suffice to say, my UCLA Hepatologist is the main man that did the Harvoni test studies.
I'd be glad to pass his name on to anyone who'd like it.
He did a marvelous job of getting my prescription appeals approved, just as of this week.
Prescribed an 8 week program.
I start the magik bullet tonight.

I'll be very curious to see how the side effects actually influence my daily schedule.
Not looking forward to more fatigue, but on the same hand, I'm hoping in the end fatigue won't be an issue at all. Looking forward to feeling better in general.

Here's hopin'...  ;)
Title: Re: Harvoni Side effects
Post by: Katie on February 20, 2015, 01:37:53 pm
Welcome  Rexray and congratulations on starting Harvoni!

I had horrible fatigue for years plus insomnia.  I managed it well until about 3 years ago and it began affecting my work so I retired in 2013.  As soon as I started Harvoni, my fatigue vanished and I was happy...almost too happy....giddy maybe.  That lasted 8 weeks and then week 9 & 10 I was gloom and doom and my fatigue came back.  Week 11 I feel good again but wear down faster than usual and now I am on my final week 12.  It has been an easy treatment for me, with subtle things that came and went so no major complaints.

Hope your 8 weeks goes as well as mine did.  I do have to mention, I even went off my supplement while on Harvoni.  I would certainly suggest you exchange water for the red wine while on treatment.  It's only 8 weeks, 2 months, after all.

Just my 2 cents worth, because I care!

Katie
Title: Re: Harvoni Side effects
Post by: Rexray on February 20, 2015, 02:03:12 pm
Thanks Katie.
In my youth I was often accused of being too happy (giddy maybe?)  ;D
It's been many moons sonce I've felt such, though I have a good day every once in a while.
Now I'm acused of becoming a grumpy old man...

From reading here many folks mention, edginess, insomnia, wide-awakeness etc. Wide a wake sounds great to me, except maybe not being able to sleep, and grumpiness not so good..
I hit the pillow and I'm out but often wake up after 4 or 5 hours, which I hate.
Makes for a long work day.

Do you think the drug is actually causing the vanished fatigue?
My hopes are that I'll get back some of my youthful resilience and general spirit.
At 63 most people think I'm in my 50's, thanks to my Mom's genes I guess.

Not good to hear you felt great and later not so great.
Title: Re: Harvoni Side effects
Post by: lovemymom on February 20, 2015, 02:08:50 pm
Hello everyone.

My mother was recently diagnosed with Hep C, no clue how she contracted it.  She was given Harvoni for treatment and is experiencing blurry vision.  She hasn't had many other issues but her vision became blurry after her second day on the medication.  Has anyone experienced this?  She called the doctor and was told her blurry vision was not a side effect from the medication and to get her eyes checked. :-/  So, I am turning to the people with real answers.  Can anyone help provide an answer as to if this is a side effect of the Harvoni?  Thank you so much!
Title: Re: Harvoni Side effects
Post by: MEG on February 20, 2015, 02:09:00 pm
Rex: My hopes are that I'll get back some of my youthful resilience..

Hear, hear, hear! Did I say it loud enough Universe?

;-)

Title: Re: Harvoni Side effects
Post by: Katie on February 20, 2015, 02:12:04 pm
Thanks Katie.
In my youth I was often accused of being too happy (giddy maybe?)  ;D
It's been many moons sonce I've felt such, though I have a good day every once in a while.
Now I'm acused of becoming a grumpy old man...

From reading here many folks mention, edginess, insomnia, wide-awakeness etc. Wide a wake sounds great to me, except maybe not being able to sleep, and grumpiness not so good..
I hit the pillow and I'm out but often wake up after 4 or 5 hours, which I hate.
Makes for a long work day.

Do you think the drug is actually causing the vanished fatigue?
My hopes are that I'll get back some of my youthful resilience and general spirit.
At 63 most people think I'm in my 50's, thanks to my Mom's genes I guess.

Not good to hear you felt great and later not so great.

Harvoni definitely took away my fatigue and my insomnia.  I only felt bad for 2 weeks and am now doing good again.  Who knows why.  Still not really up to par as after about 6 hours I wear down.  I am very hopeful that the good things last when I finish and I will regain all of my energy and strength.  It is so wonderful to get my spark back.  I've missed it!  Even my skin has improved and I attribute that to my liver actually removing the toxins, like it was meant to do.  I think this nasty virus has caused us to slowly poison ourselves.  I had large pores all over my face and especially my nose and tried everything.  Now they are just gone!  Now if it would just remove the wrinkles too!  HA!

Katie
Title: Re: Harvoni Side effects
Post by: Rexray on February 20, 2015, 02:18:40 pm
Good for you Katie!
Many annoying health issues I've attributed to aging might just be because of the virus though my viral load isn't nearly as bad as some here.
Skin conditions, slow healing, malaise, joint and tendon pain, et al.,..may all be part of this downhill spiral.
Like I said, Here's Hopin'!
Title: Re: Harvoni Side effects
Post by: fllazylady on February 20, 2015, 04:02:41 pm
Hello Warriors
I am on Undetected as of Friday the 13th woo hoo
Thank you for all your support
Eight more weeks of treatment to stay that way...
Title: Re: Harvoni Side effects
Post by: diamondd on February 20, 2015, 04:57:26 pm
Hey nadewit:
My understanding is that you can take omeprazole while on harvoni, as  long as it's the lower dosage (20 mg). I space my harvoni at least 6-8 hrs. from taking omeprazole. My dr. even thought there was a possibility of taking it in a higher dosage, but we didn't discuss that since I was on the lower dosage.
Apparently, harvoni requires the acid in your stomach to be properly absorbed.
Check back with your dr. about possibilities.
Best wishes.
Title: Re: Harvoni Side effects
Post by: Katie on February 20, 2015, 05:38:47 pm
Congratulations Lazy Lady!!!!!! Flap those beautiful wings and fly free for the next 8 weeks!  The good news is always such an inspiration!!!!!

Katie
Title: Re: Harvoni Side effects
Post by: nicole_1234 on February 20, 2015, 06:51:05 pm
Woohoo Paulette!!!!!! I just knew it. Congrats and I hope this makes all the other hardships easier to deal with. 8 weeks more is great to really make sure it stays gone. I'm so happy to hear this news today!
Title: Re: Harvoni Side effects
Post by: grodeestok on February 20, 2015, 06:55:59 pm
Does anyone know how art1951 is doing?
Title: Re: Harvoni Side effects
Post by: Katie on February 20, 2015, 07:12:30 pm
Congratulations Lazy Lady!!!!!! Flap those beautiful wings and fly free for the next 8 weeks!  The good news is always such an inspiration!!!!!

Katie

How's your BP doing, Paulette?
Title: Re: Harvoni Side effects
Post by: nicole_1234 on February 20, 2015, 07:30:25 pm
Hey I wanted to ask about a good side effect. I'm a singer and songwriter by profession and I had been having a lot of trouble with my voice in the past years, it always felt tired and sometimes constricted in my throat. Since I have been rid of the virus for about 8 weeks now I think, my voice and throat feel much more clear.

I had always thought it was allergies or just aging (I'm only 38 though) or just how my voice was no matter what kind of exercises I did to improve it. Or maybe the bad air in Los Angeles. Could it have been the Hep C?

Title: Re: Harvoni Side effects
Post by: trithis on February 20, 2015, 07:47:35 pm
nadewit: I am at day 23 and have also had issues with heartburn. My Naturopath put me on to organic, unfiltered apple cider vinegar. First sip said "This won't work", but seconds later I was feeling fine. I know that every supplement and blocker impacts the Harvoni effectiveness, so this has been a good thing for me.

Best of luck keeping the GERD at bay!
Title: Re: Harvoni Side effects
Post by: Katie on February 20, 2015, 07:53:21 pm
Hi Sister!  It could very well be related Nicole.  Our liver has not been able to clear out the toxins in our system and that would affect everything.  I mentioned earlier how my skin has improved.  For years I have had huge, noticeable pores and they just miraculously disappeared.  Like, one day they were there and then they were gone.  I thought something was wrong with my eyes, at first!  HA!  I think we will notice lots of subtle changes as we regain our health.

I know in the past year, I have had some discomfort at the dentist where it felt like my throat was closing off.  I would make him stop for awhile so I could clear it and relax it.  Maybe that was from the virus as I have never had that before.  Very uncomfortable.

Keep singing our little songbird.  That is good for the soul.  Do you have any audios for us to listen to?  That would be fun!

Katie
Title: Re: Harvoni Side effects
Post by: TerryLF on February 20, 2015, 09:02:24 pm
Trithis, something to think about, and maybe it's nothing. I'm sure you were told to avoid antacids with Harvoni because the change in PH could affect absorption. I just wonder if the acid in vinegar will make a difference with PH going in the opposite direction. It's probably nothing because I wasn't cautioned about acids, just antacids. Anyone on the site have any thoughts on that.
Title: Re: Harvoni Side effects
Post by: Katie on February 20, 2015, 09:45:26 pm
Rex: My hopes are that I'll get back some of my youthful resilience..

Hear, hear, hear! Did I say it loud enough Universe?

;-)

Hi Meg...I'm sorry I didn't answer you question awhile back on fatigue.  Before treatment it was horrible and got so bad the last 3 years or so that I finally retired.  It was like my joints had 100 pound weights in them and everything was a chore.  My productivity was affected and it wasn't fair to the technicians that worked under me and I am really glad I made the move. 

I have always been a worker and refused to let the fatigue stop me but it certainly slowed me down.  I have to tell you, that in spite of it, I painted the siding on my house in 2013 and painted the garage last summer.  I am in the process of remodeling my 2 bedrooms and just have a couple more walls to paint in my bedroom and then am about done....other than organizing all of my STUFF and downsizing so I can feel less burdened and cluttered.  Clutter really bothers me.

Because of my completion of big projects, no one realized how sick I was but couldn't understand why I isolated myself and didn't attend many functions.  I just didn't have it in me.  Hopefully that will improve as isolation isn't good and isn't healthy but I have become so used to it that may be a challenge.  This forum is so good for me because it not only gives me support but communication with folks fighting the same battle!

I love all of you guys.  You are terrific!

Katie

ps:  I feel better on Harvoni than I have in years and hope all the good "side effects" continue once I quit the meds (6 more days)!
Title: Re: Harvoni Side effects
Post by: Lynn K on February 21, 2015, 07:35:41 am
For those takng omepresol for example PRILOSEC or Nexium

Per the prescribing info sheet for Harvoni page 5 table 3

http://www.gilead.com/~/media/Files/pdfs/medicines/liver-disease/harvoni/harvoni_pi.pdf

Proton-pump inhibitor doses comparable to omeprazole 20 mg or lower can be administered simultaneously with HARVONI under fasted conditions.

The only way to take omepresol correctly with Harvoni is AT THE SAME TIME on an empty stomach.

Check the table for antacids either 4 hours before or 4 hours after Harvoni ONLY

and for H2 receptor antagonists like Pepcid Tagamet etc those are at the same time and 12 hours apart ONLY


The reason is the Ledipasvir is much less soluble in a less acidic environment so you will not be getting the full benefit of the Ledipasvir as effectively you are reducing your dose Sovaldi does not work as effectively alone.

Ask your doctor's office for guidance on taking acid reducing agents with Harvoni
Title: Re: Harvoni Side effects
Post by: Mugwump on February 21, 2015, 08:24:02 am
Hello everyone.

My mother was recently diagnosed with Hep C, no clue how she contracted it.  She was given Harvoni for treatment and is experiencing blurry vision.  She hasn't had many other issues but her vision became blurry after her second day on the medication.  Has anyone experienced this?  She called the doctor and was told her blurry vision was not a side effect from the medication and to get her eyes checked. :-/  So, I am turning to the people with real answers.  Can anyone help provide an answer as to if this is a side effect of the Harvoni?  Thank you so much!
Yes there is blurred vision for some of us. I am on week 12 and was having trouble reading even with my glasses on. My blood pressure increased and I am certain that this increase caused some problems. Plus there seemed to be a marked slowing in how fast my eyes focus.

At week twelve it has all cleared, my blood pressure is back down and my eye sight over distance, sense of colors and speed to focus are now better than they were prior to treatment. For a while during treatment I took myself off the road because I knew my eye sight was causing difficulties in perspective!

So the good news is that your Mom should get over the problem. This problem was well know with Solvoldi treatment and so logically Harvoni causes the same problem. Make sure your Mom drinks water and tries to do things that will help with the increased blood pressure. I am sure she is being monitored for anything dangerous so don't worry.

There is increased renal stress during Harvoni treatment and to deal with it you need more fluids to flush the high level of cell exchange from the liver. All these things are discussed on the thread and elsewhere. Yes Harvoni is a powerful drug and needs to be carefully monitored, but as all here who have experienced other treatments for HCV will agree it is a walk in the park.

Give your Mom a kiss from me and everyone here!

Best wishes for an easy and happy treatment for your mom and many more happy years for you and her together!

Eric
Title: Re: Harvoni Side effects
Post by: fllazylady on February 21, 2015, 09:49:59 am
Katie,
I have noticed great health changes since being on the cure. My nails and hair growing like crazy clear skin feeling stronger more energy. It's amazing how your body can feel when it's healthy I almost forgot what it felt like.
Light n Love
Paulette
Title: Re: Harvoni Side effects
Post by: Rexray on February 21, 2015, 10:36:56 am
Well, after much pointless trepidation yesterday, I took my first dose at 9:30PM last night.
In bed at midnight and up at 6:30AM today, and I feel great. Oddly enough better than I may have predicted.
Here's Hopin'!
Title: Re: Harvoni Side effects
Post by: grodeestok on February 21, 2015, 10:50:58 am
Rexray. Good luck with the treatment!  I was apprehensive too about side effects as I travel for a living. Started 5 days ago and so far no negatives at all!

Here's to hoping the same for you!
Title: Re: Harvoni Side effects
Post by: deniseb00 on February 21, 2015, 12:32:43 pm
I finished my 12 week Harvoni treatment on Feb 3rd. I was about three weeks into treatment when my daily headaches began, as well as slight nausea.  My headaches would start in late afternoon at that time, and then progressed to them starting earlier and earlier. During this time I had been taking prescription pain meds, as well as advil to get me through, as my doctor asked me to do. Headaches continued to worsen, and even now (almost 2 1/2 weeks out of treatment) I am still getting them, which I don't understand, b/c I'm sure the Harvoni is out of my system. I do have an appt with my PCP next week, thinking that perhaps severe headaches are not the result of treatment but maybe have something else going on. Not time for an eye examine, so I ruled that out.  Has anyone else experienced this? I would appreciate any replies. Thank you so much for taking the time to read this. Love and Good Health to all.
Title: Re: Harvoni Side effects
Post by: JoeK9999 on February 21, 2015, 01:55:59 pm
Denise,
I finished 12 weeks of Harvoni on Jan 15.
I didn't get headaches, but had lots of dizziness in the last 2 weeks of Harvoni.
I took me over 4 weeks to get back to normal after EOT.
Hope your headaches resolve soon.
Title: Re: Harvoni Side effects
Post by: Mike2 on February 21, 2015, 02:11:18 pm
Just about finished first week on Harvoni played tennis for 2hrs 2 miles on the treadmil. Slight headache other then that I feel like the drug is giving me lots of energy.
Title: Re: Harvoni Side effects
Post by: SunIsOut on February 21, 2015, 02:35:44 pm
Hello Warriors,
It me Paulette. No good news on this end. Spent a week in Hospital battling high BP ever since they put me on Ribavirin to boost the treatment. I'm on week 15 still detectable. After I went on ribavirin my blood pressure was spiking put me in the hospital did stress test Catherization and now they put me back on ribavirin and my blood pressure is going out of control again Doc is changing my blood pressure medicine tomorrow getting a little weary. Has anyone else not cleared yet??
Sending you all Light n Love on your treatment...
Paulette

My doctors have me waiting to start treatment after my visit last Wednesday.  They are worried that the insurance company will not approve the 24 week treatment.  As a result they want to have me take Harvoni with Ribavirin for 12 weeks. They are trying to get this approved at present.

Here is an article on it. http://www.hepmag.com/articles/Harvoni_ribavirin_cirrhosis_2501_26459.shtml (http://www.hepmag.com/articles/Harvoni_ribavirin_cirrhosis_2501_26459.shtml) 

Did you start Harvoni with Ribavirin?  I do see that Ribavirin does have a known list of side effects and other dangers.

I hope your side effects diminish but wondered how you started the Ribavirin.  Also did you have BP challenges or other diagnosis prior to?  With the exception of this virus I am fit as a fiddle.
Title: Re: Harvoni Side effects
Post by: Keanu2015 on February 21, 2015, 02:41:37 pm
Hi Everyone,
  thank you so much for all the helpful info. I have been reading some of the entries here on and off for days leading up to my start with Harvoni. I found myself praying that I would be approved for the 12 weeks of it that my Gastroenterologist ordered. I know some folks are having a lot of trouble getting approved for it. It's a gut wrenching process for sure. I feel so fortunate and blessed. I am praying that everyone will have access to this same life saving opportunity. I took my first pill yesterday at noon. I chose this as my time, because I am currently taking one 1/2 scoop of Ultra nourish from Natural Wellness and 1/2 scoop Ultimate meal from The Ultimate Life, along with Co Q10 and Garlic vitamins at 8 am. I don't know if they would interfere with Harvoni in any way. I'm assuming not as so far no one I have spoken to at support path objects. I don't see warnings about such anywhere in forums either. Anyway, I actually started feeling the pain in my liver subsiding. I was slightly dizzy and foggy yesterday afternoon and evening but was still able to do 30 mins cardio on treadmill around 7pm! A slight amount of pain was coming back around 10am after breakfast today. I took my second pill at noon and here two hours later I am pain free again. Why am I on the treadmill? Well besides being a Marine who, (not so bright sometimes), has set a goal. I strongly believe that cardio and lots of water will compliment the process of viral elimination from my body. I'm hoping to run/walk for 30 mins every other day along with guzzling water every day all day long. Can anyone help me verify if any of these herbal shakes I've described or vitamins aren't wise to take? I'm looking forward to getting to know you folks here. God bless you all.
Hep C dx 3/2000 = Likely infected mid 80's
Re-dx 1/16/2015- Hep C 1a - Ast 71 - Alt 126 - Fibrosure 0.90 F-4 Cirrhosis - Necroinflammatory 0.89 severe activity- VL 3,874864
Title: Re: Harvoni Side effects
Post by: Katie on February 21, 2015, 03:23:37 pm
Hi Keanu and thanks for your service and congratulations on starting the Harvoni miracle cure!

Personally, I stopped my supplements, some of which I've been taking to help my liver and other issues for a decade.  I didn't want to take the chance of something working against the meds.  I do take Vit D every once in awhile as I am on the low normal side and hit rock bottom years ago that caused all sorts of issues.  I also take a Vit B complex in liquid form as needed, but both of these are taken in the morning and I take Harvoni around 9:30 at night. 

Our physicians aren't always familiar with supplements, and they often think they are a waste of money so I don't count on our them to advise me on that.  Many of the supplements I have taken have plants and seeds and roots listed so I am not sure exactly what is in them, but would do research and found some good for the liver and gallbladder function and for the circulatory system.  I will go back to them once treatment is completed, as they really have helped me in the past and I give them some credit for not having cirrhosis develop.

I would check ingredients and not take it if they contain St John's Wart as that has been listed as a supplement that interacts negatively with Harvoni.  I have a great pharmacist that I ask about interactions with the liver and have always consulted him on anything I take, for the past decade.  He has been great at steering me in the right direction with antibiotics, laxatives and supplements so when I go to my doctor I can discuss it with him.  Fortunately I am really healthy (other than joint issues) so I am not on any prescription medication.

So did you get your approval for the 12 weeks?  I will be finishing up the 12 weeks with only 5 more days to go.  I am in count down mode and am delighted sometimes, and then anxious sometimes.  I have been feeling so much better with Harvoni that I don't want the improvements to slide backwards!  There was a couple weeks that my fatigue and mood was bad but it is gone again, so there have been ups and downs, but overall it has just been a wonderful blessing, as is this forum.  Glad you found us.

Have a great day and keep the faith!  We are going to celebrate 2015 as a great year leading to a healthy life!

Katie
Title: Re: Harvoni Side effects
Post by: Keanu2015 on February 21, 2015, 04:29:29 pm
Hi Katie,
 Thank you so much for your reply! I have been very healthy also with no meds or allergies outside of this awful situation I'm in, as if it's not enough right? I was diagnosed in 2000 with Hep C, (I'm thinking I got it around 85 or 86), and wouldn't even consider the "cure". It seemed too medieval to me. I knew a guy who went through it and he was not recommending it at all. Same as you I had always tried to find the best possible cocktail of supplements to move life ahead. (Currently green powder stuff with lots of plants seeds and roots! along with many vitamins). I read many books and I developed my own little plan with lots of tweaking through the years to try and fight this thing off. I found that if I added more such as ultra thistle or clinical liver supplement and LIV 52 it helped, so I imagined it was buying me more time--perhaps. Lately not a lot of what I was doing helped me much. I've been getting tired and I began experiencing discomfort on good days and some side sticker pain on bad ones, like during a long run. My ultrasound 1/16/15 was unremarkable and normal (Thank God) but my Fibrosure revealed F-4 and A3 inlflammatory -severe activity, so this couldn't have come at a better time for me. My doctor is hard to reach and not very well hands on so far outside of starting the approval process in motion. He said he will see me when I'm finished for a potential colonoscopy.(I put that off when I learned how serious my Hep C had become). I waited almost a month. His secretary let me know my prescrip came in. Yes it came in with 2 refills, so 12 weeks. The nurse at med path suggested I do something precisely as what you just shared. Perhaps spreading the nutritional powder shakes/ vitamins and Harvoni medication out. I think after hearing from you now, I will simply go with the Harvoni alone and a balanced diet moving forward on day 3. I'll put together a post Harvoni herbal health regimine later to try and regenerate my Liver if all goes well.. same. I maintained 2 of my pills as well for cardiovascular health. CoQ10 and garlic -setting the rest aside already. I have to whip this thing, my boys are too young to lose their daddy. Oh my goodness you are so close to there! Prayers your way! Hopefully we can have a huge victory party when it's done... agreed! K
Title: Re: Harvoni Side effects
Post by: MEG on February 21, 2015, 04:48:47 pm
Hi Katie, No worries about answering re; the fatigue. There are so many threads here that I forget where I found and asked what!

Quote
Before treatment it was horrible and got so bad the last 3 years or so that I finally retired.  It was like my joints had 100 pound weights in them and everything was a chore.  My productivity was affected and it wasn't fair to the technicians that worked under me and I am really glad I made the move.

You spoke for me...yes, feeling like my joints are 100 pound weights sometimes....Although, over the years, I've had great periods alternating with in-bed periods...When people see me riding my bike, in all the lycra gear ;-) they're shocked. 

But what they don't get is that people like yourself who have remodeled the house, I was living in the mountains last year and shoveled several times a week---we pace ourselves. It's not like a job where we must be "on" for 8-12 hours per day..

I hear you about the isolation. I am fundamentally a very social person. The adjustment was difficult--to say the least. But at one point I became quite inward focused. Worked on "stuff" from my childhood, etc. that needed addressing. And it became very comfortable to just stay in...

I'm now heading in the other direction--- balancing my genuine love for solitude and love for sharing my life with meaningful friendships.    I moved across the country last summer, preHarvoni, and since October with this protracted cold, it's been rough. Not having the network of friends to lean on yet being physically unable to make new connections.

I wish for you a wonderful last 5 days on the H cure!
Title: Re: Harvoni Side effects
Post by: MEG on February 21, 2015, 04:53:58 pm
Re: antacids and acids...

It was heavily stressed to me that these are the major meds/supplements that I need to be careful with. Lynn, as counterintuitive as it sounds, my doc confirmed that taking omeprazole at fasting along with H is the way to go....

Knowing that Sovaldi and Ledispavir love acidic environments, I've been chucking down a tablespoon of apple cider vinegar with my dinner time dose(I take my other meds in the am)....My sense is that it *may* help but it will not harm. Any little thing to max my chances of an SVR....esp since I'm only approved for 8 weeks.

Have a wonderful, healing day everyone. Thanks so much for being here...
Title: Re: Harvoni Side effects
Post by: trithis on February 21, 2015, 05:54:31 pm
TerryNF & nadewit:
I did some research and found that the human stomach runs a pH between 1-5.

Apple cider vinegar is normally 2-3 pH. Most antacids are well above 7 pH.

Optimum absorption of Harvoni looks to be around <2 pH.

I'm planning to take a sip of apple cider vinegar daily and only use a low-dose omeprazole when things get rough.

My best to all of you!
Title: Re: Harvoni Side effects
Post by: SunIsOut on February 21, 2015, 06:33:16 pm
I took my supplements into John Hopkins and they looked them over. They cautioned that the clinical trials and FDA approvals will include test with vitamins and such but there are too many herbs to test and therefore recommended that I not take them.

I will continue with the L-Theanine, Serapeptase, B complex but all others will wait. They want me to come in after 4, 8 and 12 weeks to test and see how the results are coming along and then again test at 24 weeks.

I hope to start on Wednesday assuming the Ribavirin gets delivered.  Also, just in case no one knows, if you go to the Gilead site for Harvoni you can apply for the coupon so your out of pocket does not exceed $5 per refill.  I gave the coupon to the pharmacy and works great.
Title: Re: Harvoni Side effects
Post by: Katie on February 21, 2015, 07:26:07 pm
Good information Sunisout!  I kind of figured that was the case but am happy to see they are being cautious and giving that information.  So many supplements and then so many companies, some good and some not so good.

Congratulations on starting treatment.  Hope all goes well with you!

Katie
Title: Re: Harvoni Side effects
Post by: Keanu2015 on February 21, 2015, 08:33:54 pm
Thank you Sun is out and Katie,
 That is precisely the type of info I was looking for as well. Additionally I had a thought earlier after writing my last post to Katie. I realized that the herbal shakes and supplements I was taking such as ultra nourish from naturalwellness.com were to protect my liver and also to flush it with antioxidants. It makes sense to me that it would be natural for these components to also see Harvoni also as an intruder. In which case if those things were actually shielding my liver from foreign chemicals it might fight Harvoni! Yup it's probably best to leave the herbs alone for a while.
Thank you!

Hope you will both find your freedom from this wicked virus!
Title: Re: Harvoni Side effects
Post by: nicole_1234 on February 21, 2015, 08:55:36 pm
 yes I quit all of my herbal supplements on the advice of my nurse. They just don't know enough and I truly believe in the medicinal effects of those supplements so I decided to quit in case there was any unknown interactions. I'm going to wait a week after I finished the treatment and then start a nice easy cleanse.
Title: Re: Harvoni Side effects
Post by: Keanu2015 on February 21, 2015, 09:12:46 pm
Thank you Nicole!

        The more I here this, the more I feel better about abandoning all that I've known for the past 15 years. Tomorrow morning I"ll wake up a bit lost as to how I'll replace some of my core vitamins that always show as 'complete' on my fitness pal. Not thrilled that I'll have to drink OJ, what with its 14 grams of sugars/ cup to replace what came to me in green powder as one of the many ingredients of the ultimate meal. Your stats look fab! Happy for you!

K
Title: Re: Harvoni Side effects
Post by: MEG on February 21, 2015, 11:00:33 pm
Keanu----thanks so much for mentioning antioxidants while on Harvoni perhaps being counter productive....people on chemo for cancer are told to not take antioxidants for the very same reason. The only one I've been taking is Vit C to fend off this stubborn cold that began last October(!)....

I'm wondering if I should drop it since it's obviously not helping the cold...I have 4 more weeks to go out of 8 weeks. Trying my best to absolutely maximize H's chances of a cure...

Re: the orange juice...I know, it has so much sugar. I've not had a glass in many years. But how about the whole fruit?
Title: Re: Harvoni Side effects
Post by: Keanu2015 on February 21, 2015, 11:27:52 pm
Hi Meg,

      The fact that you have a persistent cold got my wheels turning after I read this. I'm having some minor issues today with my lungs (Harvoni day 2) I have to cough once in a while. My throat is slightly sore too. Almost like a slight cold beginning. Perhaps it's not related and only coincidental. To be honest I was considering taking a C tab for this lung thing. I'm not sure now either. Perhaps it's a symptom of this drug and the C was never going to work? Thank you for the advice... I'm going to get the whole fruit :) Looks like my home is going to be filled with a lot more perishables than I've had in years! thanks for you input on chemo! I never knew that. So maybe it does make sense for us too. Hope you beat this thing! I think we all have a very good chance now. Nice chatting with everyone here today.. Goodnight friends
Title: Re: Harvoni Side effects
Post by: Katie on February 21, 2015, 11:35:42 pm
Meg...that cold has been with you way too long!  Have you had your Vit D level checked recently.  I used to get colds and would have them for months whereas others would get rid of them in less than a week.  I insisted on a Vit D level checked and it came back at 13. (normal range is 25-75 and over 80 is toxic) When the nurse got the results she actually called me to get me on it ASAP.  Since I've been keeping my level in the normal range, I think I've had 2 short lived colds in the past 8 years!  Maybe longer, actually.  Time rushes by.

It would be worth checking out!

Katie
Title: Re: Harvoni Side effects
Post by: Katie on February 21, 2015, 11:40:19 pm
I have a grapefruit almost every morning with whole grain toast.  My body craves it.  Since I take Harvoni a couple hours before bedtime, I figure it is all good.

Hope you are all enjoying your evening and weekend and you both get rid of the bug (if that's what you have Keanu).  Feel better Meg!

Katie

Title: Re: Harvoni Side effects
Post by: MEG on February 21, 2015, 11:52:15 pm
Thanks Katie for your concern..

Ya, several years ago my D level was 20. I've since been taking anywhere from 2K-5K units depending on time of the year. Go up in the winter and down in the summer. My levels have been anywhere from 40s-70s....

I wish that were the problem!

While on Vit D topic. While surfing around tonight, I found this article on how Vit D may help hcv treatment, svr's...Pretty interesting and great results by an Italian hospital with the interferon/riba protocol...I'd not known that Vit D was in the discussion as a helpful agent in actually managing hcv related liver issues and as a treatment adjuvant.  We learn something every day...;-)

http://www.journal-of-hepatology.eu/article/S0168-8278(12)00602-2/fulltext
Title: Re: Harvoni Side effects
Post by: Katie on February 22, 2015, 12:09:05 am
Interesting.  Thanks Meg and the article explains a lot!  I had a cold that turned into a sinus infection that lasted a year, brought on tinnitus and this was before I was diagnosed with the alien virus Hep C.  A very devastating part of my life, but we survive.  It was actually because of it that I was diagnosed as my liver enzymes came back high.  I was so sick and was on and off antibiotics for that entire year.  I am sure that didn't do me any good...and here it was just Vit D.

Knowledge is power.
Title: Re: Harvoni Side effects
Post by: LenFreeHepC on February 22, 2015, 11:04:47 am
Hi there,

It's my third day on Harvoni. So far so good. I feel maybe just a little nausea, and it takes me longer than usual to fall asleep, but I relate it more to the adrenalin levels, since I'm very excited about all this treatment.

The things is that my virus load is 1M. And according to the recommendations, I am allowed to take the med for 8 weeks only, but my doctor told me first that it's still better to take it for 12 weeks and then she told me actually it's my decision.
This all's been very confusing.
Anyone else here with <6M load? How much time you doctor recommends to take the med in your case?
 
Title: Re: Harvoni Side effects
Post by: MEG on February 22, 2015, 11:14:44 am
Katie, I'm glad the article helped you too.

How interesting that you bring up sinus infections. I'm now recalling that 21 years ago my symptoms began with constant sinus infections. But my pcp at the time couldn't explain why I suffered the profound fatigue that was getting worse and worse. She actually accused me of being depressed and stressed at my job----I'd confided pre-getting sick, during a physical, that work had been stressful, lots of management/personnel problems, but was getting support from a psychiatrist that I'd been seeing for several years for issues unrelated to work. I emphasized that I truly loved ICU/ER nursing despite the then current stress.  Work was my source of feeling productive and accomplished.  She was convinced that she was right.  She reluctantly sent me for more blood work---this is back in the days when they gave you the lab slip and hand-checked the boxes. The ICU nurse in me took over----"don't know what's going on with this kiddo? Let's do a full-on workup!" I checked off LFT's, Thyroid panel, and ANA(checking for lupus(!) and many others that I cannot remember right now. 

Indeed, my LFT's had doubled, at high normal range(40s) compared to teens/20s when I'd had my physical the year before.

To add insult to her injured ego--- I eventually asked for my medical record copies to self-refer to another pcp.  She had written, "I ordered a CBC and patient checked off a litany(!) of inappropriate tests." 

Meanwhile, my psychiatrist called her(without my asking) to let her know that "this patient does not cope with stress by not working. That working is what keeps her going).  That not being believed was causing her added stress and depression." PCP did.not.appreciate. this.

She reluctantly made Infectious Disease referral, yet set me up so that the ID doc, from the initial hand shake, diminished me. Went into this whole pscychobabble that he was unqualified to indulge in. But to his credit and to cover all bases, he did order the HCV test and voilá!

At the next appt where she reviewed the HCV and LFT's, I recall her not apologizing for the additional agony that she caused by not believing me......As a nurse in the ICU, we apologized to parents when we missed something. When it took us longer than it could if only we'd listened to a mom saying, "I know my child and he looks fine to you but he's not fine."   They appreciated the honesty. 

At the end of the appt when she told me she wanted to see me post hepatologist consult, I told her, "Nah, highly intelligent doctors in this city are a dime a dozen(it was true as this is a top medical institution(s) city, but I now can't believe I said that to her) and I'm going to find one who will not sabotage me."

 Her head drooped down in astonishment/shame. 

I can't believe a discussion of sinus infections triggered this long-buried memory. And I apologize for it's length.

The truth is that she was an anomaly. I always enjoyed  excellent and collaborative relationships with my physician colleagues in the ICU. And with my personal health care providers.  My subsequent PCPs(I moved a few times) believed me and were wonderful in every way. My hepatologist is a rock star in my mind because he's super smart---and incredibly human. Known him for 20 years at this point and he's in charge no matter where I live.  We've shared family photos for years.  I give his baby daughter a Christmas gift, etc., etc. 

Good Sunday morning, Kate.....It's amazing all the stories that hepC has authored....we could probably compile our stories into a book. 

I hope you have a healing Sunday.!
Title: Re: Harvoni Side effects
Post by: MEG on February 22, 2015, 11:38:12 am
Hi LenFreeHepC,

Welcome. I've only been here a short while and I'm finding this group to be a wonderful support system and people here share generously whatever knowledge they have.

I happen to be on the 8 week regimen but I was not given a choice....I didn't question it until I came here to learn that most here are on 12 weeks and unfortunately, one of the members on 8 weeks was not undetectable at end of treatment(EOT)......

After dissecting the FDA approval document where they describe all the trial results, the numbers look like for those who have viral loads less than 6million that 8 weeks is enough.  That the relapsers had greater than 6 million viral loads. My problem with this is that the number of patients were relatively small to generalize to the several million of us out there with HCV.   I will be pushing my doctor for 12 weeks.

It appears that 1b genotype patients are doing better on 8 weeks but the tougher to treat 1a are more likely to relapse, if they indeed do.

My advice is that if you have a choice, go for the 12 weeks. The side effects are generally minimal and even if they become more intense, they will never be like the interferon/ribavirin side effects. The extra "insurance" is worth it. I wish I had a choice.

What is your genotype?
Title: Re: Harvoni Side effects
Post by: LenFreeHepC on February 22, 2015, 12:17:57 pm
Hi MEG,

thank you so much for your reply.

I'm 1b.

I wish you will succeed to persuade your doctor to approve 12 weeks for you.

I'll tell you what I'm concerned of: long term side effects. This is why I'd rather take it 8 weeks if possible. But you're right: you cannot be sure in this case..

The problem is that on one side it's unbelievable that we finally have such a treatment. On the other hand though, my mind would be easier if this treatment's been proved itself for many years, you know what I mean.

However, I have jumped to have it the moment it was available to me, so I'd rather take some risks but be free of Hep C I believe.
Title: Re: Harvoni Side effects
Post by: Keanu2015 on February 22, 2015, 12:57:52 pm
Hello Everyone!

      I would like to start by sharing a bit with Len. Len my HCV RNA (iu) was 3874864 My HCV RNA (log IU/ML) 6.59 I'm still not sure how to read those. I figured I was under 6million but then what is 6.59? Anyway, when my doctor started the request for approval those were the figures. I'm on day 3 also and have experienced precisely the same things as you. I had the adrenaline issues as well! Especially after hearing the day before that it was being shipped to my pharmacy...Barely slept that night. I waited over a month for approval and even with my horrific stats I was still worried about my insurance picking it up. My doctor authorized 12 weeks for the reason that I am F-4 cirrhosis, A3 severe activity. I never knew that I would have such numbers if my eyes and skin weren't turning yellow. I never got to such a point and I look at myself everyday. I constantly looked under my eyes for bad signs. I knew I had this thing for a long time but those figures were a scary wake up call. I'm so glad I am able to have a chance at healing. That was the longest month in my life. I am a 1a btw.
Title: Re: Harvoni Side effects
Post by: LenFreeHepC on February 22, 2015, 01:16:44 pm
Hi Keanu2015!

So we started together:) Hope it goes well for both of us and for everyone here.
No, unfortunately I don't know how to read this, have you tried asking your doctor or google it? maybe someone else in this forum knows?

How long you've been having the disease? I've been having it for 30 years now, and have been lucky to stay with F0-F1 until now..
Title: Re: Harvoni Side effects
Post by: Katie on February 22, 2015, 01:18:13 pm
Hi Keanu,  I posted this to a different thread when Lou asked the same thing about logaarithims.  Hope it is helpful.  So your 3 million would equal a 6 log.  :)  Having the VL in the millions is really normal as it replicates exponentially. 

Katie

Hi Lou,  A logarithim is a short cut for really big numbers.  If the question put to you is "How many numbers do we multiply to get 7.924.270 with a base of 10 (how many 10's)?   You basically count how many 10 places and in the case of millions it is 6, (10 million or more would be 7)  It is the reverse of squaring or cubing....(exponential) a number.

Example How many 2's (base of 2 instead of 10) do we need to get to 8?

2 X 2 X 2 = 8 so the answer is log(2) = 3

Base 10 is usually used in science or medical calculations and it just makes dealing with very large or very small numbers easier to deal with.  Hope that helps.
Title: Re: Harvoni Side effects
Post by: MEG on February 22, 2015, 01:21:28 pm
You're welcome, Len. 1bers definitely do better than 1a's...But I have to keep in perspective that overall 95%+ are cured.

Ya, having years of experience with the medication would be great. The good news is that they do extensive safety testing before it hits the major trials. The technology for the testing has improved vastly in the past 20 years.  And it seems like Harvoni and these other DAA's are made to behave like a laser target for the virus----constructed to attack the exact location that instructs it to replicate itself. Unlike conventional chemo for cancer that indiscriminantly attacks all cells. 

Good luck on your 12 weeks and do keep us posted. Just this morning my doctor's nurse practitioner just sent me an email(I wrote to him this w/e since my doc is on vacation and out of the country) saying that they are seeing 8weekers going undetected and reaching SVR12...it was heartening to hear. Although we both agree that we'd feel better if I was doing 12weeks.

I'm due for my 4 week on-treatment labs this Wed. Praying for undetectable. Even though the success will be when I'm  undetectable 12 weeks post EOT, getting little nuggets of good news is always a spirit-lifter....

Have a wonderful day,
Title: Re: Harvoni Side effects
Post by: Keanu2015 on February 22, 2015, 01:38:27 pm
Hi Meg, Len, Katie,
    Thank you for all the great info you shared. I think if you want more (Len and Meg) you should both definitely push your doctors! I don't see a good reason for 8 weeks if you want more, except to pass the insurance company's protocol and they are just trying to save money!  >:(
If the cost for an extra bottle is out of reach there are resources available to help you!
Thank you Katie! I"m going back over what you wrote in a minute I'm lost! lol
Len I think I've had it since 85/86. I think it's great that you stayed F-0 F-1. I have a feeling mine boosted from there to where I am now really fast- since like 2013
Title: Re: Harvoni Side effects
Post by: Katie on February 22, 2015, 01:45:08 pm

Thank you Katie! I"m going back over what you wrote in a minute I'm lost! lol


It's confusing but just think of 10 squared = 100 (log(10) = 2 and 10 cubed = 1000 log (10) = 3 ....etc.  to 1,000,000 = log(10) = 6.

You need a scientific calculator when it doesn't come out even.  I am familiar with it as I got a biology degree and used it all of the time.  I was SO happy when the Texas Instrument science calculator came out and I could put away my slide rule!  HA. Ya, I am old!

Katie
Title: Re: Harvoni Side effects
Post by: LenFreeHepC on February 22, 2015, 02:17:51 pm
MEG, are you in states?
I'm in Canada and my insurance has only approved 80%, but the rest, as I understood from my doctor, was picked by Gilead. Maybe worth asking for yourself.

Keanu,
I really don't know what has influenced this, I've got it in a very young age(8) maybe my immune system was very strong then, also I'm under 40 now, and relatively slim. But I hope it doesn't matter already for us on Harvoni or going to be soon.

I'll keep you posted, will be glad to hear the good news from all of you. It really helps to be here on this forum!!!
Title: Re: Harvoni Side effects
Post by: dennyhil on February 22, 2015, 02:28:03 pm
Hi Folks,

dennyhil here - so glad I found this forum.  Thank you for allowing me in.

I'm 57 yr old man with Hep C.  I went through Interferon / ribaviron treatment in 06 / 07 and it damn near killed me.  I lost my job, and almost lost my marriage.  (My marriage survived and we are OK) - After the treatment my viral load was zero, and I was deemed successful.  2 years later I relapsed.. the viral load returned.

Fast forward 8 years and I've recovered emotionally / financially - I have no symptoms but my doc has been telling me to go to my gastroenterologist and get back into treatment.  That was 1 year ago...   I have done nothing because I live in fear of any treatment after what happened last time.. Now I'm hearing and reading all about this new drug....

The job I have had for the last 7 years has amazing insurance  Providence health care.  My premiums are low, and the coverage is complete.  An example is I've had 2 major surgeries and I've paid zero out of pocket.  I have a friend at work that has exact same coverage as me that has multiple myloma.  He's undergone stem cell transplant and bone marrow, plus everything else that goes with the disease.  same thing - zero out of pocket.

I go in to see my gastroenterologist tomorrow to begin the qualification process for this new drug Harvoni..  I also have begun sessions with a psychologist for additional support.  I have great support of wife and family.  I'm hopeful and excited, and based on what I've read here about success rate and limited side effects, very much "less fearful".

That's my quick story..  I'll be checking in and reporting updates / progress etc.

Lastly I want to give a heartfelt congratulations to those of you that are in the Harvoni program, and to those of you that have successfully completed the Harvoni treatment. You have persevered, and hopefully will have the rest of your life in good health.

To those that can't get the medication due to insurance refusals or other complications, my heart goes out to you..  Please hang in there.. and keep posting.  I have hope that things will change..

I don't know which side of this I'll be on yet - Treatment / insurance refusal / medical complications - I just don't know, but I am diving in, and will post frequently.

Thanks,
  Denny



Title: Re: Harvoni Side effects
Post by: MEG on February 22, 2015, 02:39:59 pm
Hi Len and Keanau, I'm in the states. I'm on Medicare with Blue Cross/Blue Shield managing it. They approved for only 8 weeks and Gilead covered my $6K co-pay.

I will call Gilead first thing tomorrow and tell them my situation.  And the pharmacy who has handled my claim.  Hopefully get the ball rolling before my hepatologist comes back from vacation in 10 days. I have 4 weeks left and boy, the first 4 flew by in the blink of an eye.
Title: Re: Harvoni Side effects
Post by: LenFreeHepC on February 22, 2015, 02:41:14 pm
Hi Denny,

Thank you for your wishes and I join you wishing luck to all those waiting for the approval.

Hope you receive the approval quickly and start the treatment.
Yeah it is supposed to be more successful than interferon. I've never gone through the interferon treatment but was surprised the virus did it's comeback to you after 2 years!! I thought if you're free of it after 1 year you should be good.. wow..
I hope you will share with us the good news very soon!
Title: Re: Harvoni Side effects
Post by: LenFreeHepC on February 22, 2015, 02:42:33 pm
MEG wish you a good luck, pls keep us posted!
Title: Re: Harvoni Side effects
Post by: Katie on February 22, 2015, 02:49:52 pm
Hi Denny and a big welcome to you.  With your great insurance, I bet it goes right through.  We are so lucky this breakthrough came about in time to help all of us. I refused the old treatment as I couldn't take the chance of the side effects as I had to work and the cure rate for GT 1a was so slim, it wasn't worth it.  I was waiting for Harvoni and to my surprise and delight it happened. 

I don't have a clue, where I got the virus or when, but I did get really sick in the late 80's and then after a few months, I felt GREAT, doing fishery field research which included strenuous physical work.  Eventually I ended up in the office training techs and running a project, analyzing data and writing reports.  I swear, sitting behind a desk was the worse thing I could have done.  I got slowly sick to the point where I retired in 2013 and it worked out well as I was ready at that time, but it was so discouraging to retire and feel so lousy!  Then came Harvoni and I am in my 12 week countdown with 4 days left, and I have to tell you, I have felt better this past 11 weeks than I have in years.

I hope your treatment is as good as mine.  My only difficulty was week 9 and 10 where the fatigue and gloom and doom returned and then one morning, I woke up and felt good again.  Just wanted to let you know the effects seem to cycle with ups and downs.  Two others started the same day as I did and our experiences were the same, which I found interesting.

So...good luck to you.  The treatment time flies by and now for me the waiting will soon begin.  That is going to be the most difficult part and hope I am successful with the cure.  I hope EVERYONE is cleared as if it works as well as it is suppose to, This nasty, alien virus will be wiped out!

I'm off to finish painting my bedroom....that's how good I am feeling!

Katie
Title: Re: Harvoni Side effects
Post by: Thomas B on February 22, 2015, 04:22:40 pm
Hello to All!
I am on day 5 with Harvoni. Sides are slight headache and some pain in my liver area with blurred vision. I will do twelve weeks. I have 1a with a viral load of 15 million. I did the Pegasys (peginterferon alfa-2a) in 2001 and lost 50 lbs. and ended in failure. I have been living with hep c for 35 years. My vitamin d is dangerously low. Doc called about it and will start me on it this week. I get a burst of energy about an hour after taking the harvoni that lasts about 6 hours then I go flat. I take it  at 3 pm. I am now having trouble sleeping also. I am very thankful for Harvoni and also for this forum. I have been coming here often prior to starting harvoni and I thank you all for preparing me. I will post any news I have. I pray for us all and for those having trouble getting Harvoni. God bless :)
Title: Re: Harvoni Side effects
Post by: mario555 on February 22, 2015, 04:34:14 pm
Thomas b. Surprising you only got 12 weeks with your viral load and previous fail... I have a similar hep c history and I had 24 weeks prescribed and I am thankful for that. After 14 weeks I am getting similar side effects as the ones I had after 4-5 weeks. It feels like there were "pockets" of viruses that are just being flushed out. Review your history with your doctor and the company's instructions just to make sure you're getting the optimal treatment rather than the cheapest... Good luck!
Title: Re: Harvoni Side effects
Post by: Thomas B on February 22, 2015, 04:38:22 pm
Thanks mario555
I thought the same thing myself. I will discuss it with doc Monday. I should have said some thing at first but I was just over joyed to have been approved. Peace!
Title: Re: Harvoni Side effects
Post by: Thomas B on February 22, 2015, 05:05:01 pm
Hi Folks,

dennyhil here - so glad I found this forum.  Thank you for allowing me in.

I'm 57 yr old man with Hep C.  I went through Interferon / ribaviron treatment in 06 / 07 and it damn near killed me.  I lost my job, and almost lost my marriage.  (My marriage survived and we are OK) - After the treatment my viral load was zero, and I was deemed successful.  2 years later I relapsed.. the viral load returned.

Fast forward 8 years and I've recovered emotionally / financially - I have no symptoms but my doc has been telling me to go to my gastroenterologist and get back into treatment.  That was 1 year ago...   I have done nothing because I live in fear of any treatment after what happened last time.. Now I'm hearing and reading all about this new drug....

The job I have had for the last 7 years has amazing insurance  Providence health care.  My premiums are low, and the coverage is complete.  An example is I've had 2 major surgeries and I've paid zero out of pocket.  I have a friend at work that has exact same coverage as me that has multiple myloma.  He's undergone stem cell transplant and bone marrow, plus everything else that goes with the disease.  same thing - zero out of pocket.

I go in to see my gastroenterologist tomorrow to begin the qualification process for this new drug Harvoni..  I also have begun sessions with a psychologist for additional support.  I have great support of wife and family.  I'm hopeful and excited, and based on what I've read here about success rate and limited side effects, very much "less fearful".

That's my quick story..  I'll be checking in and reporting updates / progress etc.

Lastly I want to give a heartfelt congratulations to those of you that are in the Harvoni program, and to those of you that have successfully completed the Harvoni treatment. You have persevered, and hopefully will have the rest of your life in good health.

To those that can't get the medication due to insurance refusals or other complications, my heart goes out to you..  Please hang in there.. and keep posting.  I have hope that things will change..

I don't know which side of this I'll be on yet - Treatment / insurance refusal / medical complications - I just don't know, but I am diving in, and will post frequently.

Thanks,
  Denny



I am praying for you that you will qualify and get harvoni and be cured. God bless You!
Title: Re: Harvoni Side effects
Post by: Keanu2015 on February 22, 2015, 05:13:13 pm
Hi Denny Thomas and Mario,
     Thank you for sharing all of your stories and info. I'm like a sponge trying to pick it all up! Thomas I TOTALLY agree with Mario. From all of the research I have done and it's also based on years of watching for this miracle cure to present itself, I see that the same way... 24. Maybe they want to add Ribavirin to your regimine?
Katie thank you and I think it's awesome that you are going to be painting. I have tried to avoid it like the plague until I'm forced to paint. When I do I wear a mask w carbon filters. My lungs can't handle any fumes. I get sick from them quick. I attribute all of it to my liver problems. Thomas I have seen this happening to quite a few others with the Vitamin D thing. You're not alone. Denny Good luck.. Hope you're approved soon! Meg I'm glad you were able to use the Gilead coupon! I have Humana Medicare advantage. Coupon was shot down. Co pays were $4000.00...PANF picked them up for me! God bless you all.
Title: Re: Harvoni Side effects
Post by: 575to505 on February 22, 2015, 05:42:56 pm
Hi everyone! I'm new here and new on Harvoni, 10 days to be exact! I take my pill about 9:15 am and I havnt had any side effects! Rather, I've had very minimal ones. I've had 3 slight nose bleeds and that's it. I have heart issues so I'm unable to drink a lot of water. I hope that doesn't hinder getting rid of it.
I eat a lot of fresh and canned fruit. Does anyone know if that will affect negatively? Should I cut back, or cut out completely? What about any other diet changes?
Having no side effects is great but I hope it's working. I guess I'll find out when I take labs at 4 weeks in.
Thanks in advance for your feedback
Title: Re: Harvoni Side effects
Post by: SunIsOut on February 22, 2015, 06:01:53 pm
Hi everyone! I'm new here and new on Harvoni, 10 days to be exact! I take my pill about 9:15 am and I havnt had any side effects! Rather, I've had very minimal ones. I've had 3 slight nose bleeds and that's it. I have heart issues so I'm unable to drink a lot of water. I hope that doesn't hinder getting rid of it.
I eat a lot of fresh and canned fruit. Does anyone know if that will affect negatively? Should I cut back, or cut out completely? What about any other diet changes?
Having no side effects is great but I hope it's working. I guess I'll find out when I take labs at 4 weeks in.
Thanks in advance for your feedback

I met with my team at John Hopkins last Wednesday.  They recommended taking the medication in the morning.  I eat organic yogurt and mix in fresh berries each morning and also have a banana.  I asked about my diet which is organic as much as I can plus meats, fishes, vegetables.  I also eat a sprouted bread from Food for Life http://www.foodforlife.com/product/breads/7-sprouted-grains-bread (http://www.foodforlife.com/product/breads/7-sprouted-grains-bread) which has no sugar added.

The doctors said I did not need to make any dietary changes and to continue to use the healthy choices. I use natures promise on poultry and beef and wild caught or organic fish.

I read the Vitamin D article posted earlier and think it would be good to supplement 2000iu per day.

I am not a doctor but based on what mine told me you are good with your fruit!

I hope to start my treatment this Wednesday once the Ribavirin arrives in the mail. I will be taking one harvoni and one Ribavirin in morning and one more 200mg capsule of Ribavirin in the evening for the 12 week treatment.  :)
Title: Re: Harvoni Side effects
Post by: Katie on February 22, 2015, 06:29:57 pm
. Does anyone know if that will affect negatively? Should I cut back, or cut out completely? What about any other diet changes?
Having no side effects is great but I hope it's working. I guess I'll find out when I take labs at 4 weeks in.
Thanks in advance for your feedback

Welcome 575..I would be cautious with any herbal supplements you might take.  Some of the combos have many ingredients and they all haven't been tested for interactions with Harvoni, even though they may be good for the liver.  Sunisout, mentioned this if you check her posts.  (I am assuming Sun is a she from her name, but could be wrong on that)  HA!

Congratulations on getting this cure and finding this forum.  It has been a blessing for me!

Katie
Title: Re: Harvoni Side effects
Post by: SunIsOut on February 22, 2015, 07:31:29 pm
Ha Ha. No, I am all man. Sailor, golfer, gardener and live on the waterfront in Southern Maryland! Here is my beloved sailboat and I hope to have many more years on the water with her!

(http://farm4.staticflickr.com/3841/15007187238_20396632da_z.jpg)
Title: Re: Harvoni Side effects
Post by: Keanu2015 on February 22, 2015, 07:41:46 pm
Hi 575,
     I'm inclined to agree with Katie and Sunisout on this one. I'm on day 3 of 12 weeks. No one could really give me definitive answers on my supplements and liver health herbal shakes. One fellow at Gilead said, "look if you're not sure, it's only 12 weeks right?". I actually feel that I learned more from putting my feelers out into this forum. We are a team of intelligent sufferers here who are going whip the crap out of this beast!
As far as your various fruits and things I wouldn't worry as long as you are leaning more towards natural. I would think that canned fruit is ok once in a while, but don't staple them because they're high in added sugar and/or sodium and our struggling livers don't like too much of those. I have the fitness pal app on my smart phone. I watch my sugar, sodium and vitamin levels on there throughout the day. I don't think I will supplement with anything now for 12 weeks including vitamin D. I'll look to Tuna fish, Salmon and sardines along with milk and other sources to meet my goal there. Fitness pal also shows vitamin A and Iron levels along with Fiber, carbs and fats. Fiber is good as I'm sure you're aware for your heart. Vitamin A and Iron you'll want to keep down as they harm the liver when it's in distress. Yogurt is an excellent choice as sunisout mentioned. Try for lower sugar-more probiotics varieties to aid in digestion. Good luck to you!
Title: Re: Harvoni Side effects
Post by: Katie on February 22, 2015, 07:43:38 pm
Ha Ha. No, I am all man. Sailor, golfer, gardener and live on the waterfront in Southern Maryland! (https://www.flickr.com/photos/40298922@N04/15007187238/)

Opps...when I typed her...I went wellllll, that might not be the case!  LOL
Perfect name for someone with your activities.  I live on the coast of SSE Alaska and enjoy the inside waters of the Pacific so much.  Our winter has been much better than yours though.  We haven't had winter.  Really odd.  February has been in the high 40's and low 50's with yesterday almost 60 on my front porch.  I've been enjoying it, but it just feels wrong.

Katie

Beautiful boat!
Title: Re: Harvoni Side effects
Post by: Keanu2015 on February 22, 2015, 08:02:34 pm
Nice boat Sunisout! When you said sailor I was wondering if I might have to call you squid. I'm a jarhead lol
Katie, we had a "heat wave" in NE Pa. here today.. It was 38!
Unfortunately looks like the minus digits are coming right back to us tomorrow night. It was great to feel some sun. (Which btw is another good source of Vitamin D!  ;)
Title: Re: Harvoni Side effects
Post by: Mugwump on February 23, 2015, 02:24:15 am
Hi everyone! I'm new here and new on Harvoni, 10 days to be exact! I take my pill about 9:15 am and I havnt had any side effects! Rather, I've had very minimal ones. I've had 3 slight nose bleeds and that's it. I have heart issues so I'm unable to drink a lot of water. I hope that doesn't hinder getting rid of it.
I eat a lot of fresh and canned fruit. Does anyone know if that will affect negatively? Should I cut back, or cut out completely? What about any other diet changes?
Having no side effects is great but I hope it's working. I guess I'll find out when I take labs at 4 weeks in.
Thanks in advance for your feedback
Even though you really do need more water to help flush the system more than normal during treatment, remember that there can be more fluids in what you eat. For instance if this was the summer season and I was living in Texas, then I might just eat a swack of water melon instead of drinking extra water. So consider eating fruits that contain less sugar and more water if at all possible during treatment.

Watch the sugar content of what you are eating and try to include more things like black beans and other legumes that contain higher levels of soluble fibers. This should help greatly as the liver will be exchanging dead cells and many who have more advanced liver disease like myself have found that during the first 8 weeks of treatment you do pass more urine and can become dehydrated more easily and thus run into troubles with digestion and passing stools.

I even did the old school routine of taking 3 table spoons of olive oil straight to straighten out things. THE RELIEF WAS GOOD 'nough said!

It is important that you have a more acidic stomach for the ingestion of Harvoni because the lediposvir component can be effected by too high a ph level in the stomach and will not be absorbed as well if you take antacid tabs!  In fact they are strongly contraindicated and your physician should be contacted if you need help with severe digestive issues, should you run into them.

A balanced diet is the best approach. Liver friendly foods like coleslaw, tacos with beans,  balanced fruit salads, soups that are lower in sodium, plantain chips fried in olive oil and lightly salted with Greek seasonings. Fruits like blueberries that are higher in antioxidants, I use them in salad dressings made with yogurt and spices. Use apples and pears chopped in small pieces in your salads.

This kind of diet making sure to only consume small portions of meats will be the easiest way to help your liver deal with the treatment.

When I started treatment with stage 4 cirrhosis I was in constant pain in my liver and as the treatment progressed there was increased pain in my kidneys due to the rapid increase in pressure on renal system. The pain was not severe or dangerous, neither was the slight increase in blood pressure.

After 12 weeks of treatment the pain in my liver is gone, the ringing in my ears is backed down, my vision is clearing and I feel almost healthy for the first time in a very long time.

To conclude Harvoni will create some stress on the renal and bowel functions, but nothing that cannot be dealt with by a moderate sensible diet and exercise.

take care and eat healthy

Eric
Title: Re: Harvoni Side effects
Post by: nicole_1234 on February 23, 2015, 02:53:00 am
I'm starting to feel a bit nervous again. It's the last two days of treatment for me and all these things are flying through my head. I never found out what my viral load was at the beginning and my doctor said I don't have cirrhosis so I should do 12 weeks, but we haven't tested for that in years I don't know how she would know. I've never done a biopsy and the last time I had an ultrasound I can't even remember when it was. I'm seeing her tomorrow.  Should I ask her all of these questions and make sure it's conclusive why I've been doing the 12 week program?

I'm 38 years old and have had this for maybe 15 years. I've been especially healthy the last couple years and feel pretty healthy. My stats have always been just slightly elevated.

I also saw they were allowing me online to refill again and secretly thought of continuing for 2 more weeks if they allow the refill, but what if they try to charge me full price later for going over my prescribed amount? I'm trying to tell myself I'm just being silly and I should be glad that I can stop now.

I'm happy to end treatment, but just really hope I did everything right and that it will work. Relapsing the last time after 48 week int/riba was the worst day ever. They told me I was a slow responder and should have continued for 72 weeks, but I just couldn't bear it anymore so I quit and the virus came back two weeks later.

Well I'm trying to look on the bright side even if the virus does come back this time at least I know there's other options besides interferon for 72 weeks and taking Harvoni  really wasn't that bad. It's hard when the mind wanders to these places, trying to be in the moment. What will be will be.

Anyway I know a couple other people here are finishing the same day I am, so cheers to us and I hope we all have the best results a big negative 12 weeks from now!

Nervous and hopeful!
Nicole
Title: Re: Harvoni Side effects
Post by: Katie on February 23, 2015, 03:17:53 am
Hi Sister!  I am nervous too.  I don't want the good things to back slide like sleeping and dreaming and basically just doing better all the way around without severe fatigue (except for week 9&10).  Since I was still VL 59 @ 4 weeks and so many come back UD at that time I have doubt creep in, even though what I've read seems to say it doesn't matter what your VL is during treatment as the tests can't go to zero and all that matters is 12 and 24 at SVR.  We've been waiting for so long for a cure that I guess it is normal to have doubts, and I know the next 12+ weeks will be hard on me.  Harvoni works differently than the old treatment as it stops it's ability to replicate and it can't survive without replicating.  It is totally different from int/riba

My insurance needed a current VL before they approved so it is strange you didn't have a check.  Are you sure it wasn't part of another blood test?  I would ask for copies of ALL Of your blood work for your records.  I would ask her how she knows you don't have cirrhosis.  You probably don't since you are so healthy but things can change and it would be nice to know where you stand.

I had an ultrasound every year (for the past 9) and they were always "unremarkable" or normal; I never had a biopsy either.  Didn't want them stirring things up in there. HA!  After I got my diagnosis I really protected my liver and took supplements to assist it as much as I could.  I had already stopped drinking cause it made me feel crappy for a day or two, so that is probably why I am as healthy as I am

We are on the home stretch Nicole along with Island Girl and we are going to do fine!  We have each other and we have really been fairly consistent with our side effects and that is comforting.  I have 3 pills left...you only have 2?  Did I miss one?  I don't think I did.  LOL

I am going to try and have the mind set of Don't Worry, Be Happy and besides, I am STILL working on my remodel....I am so slow but it is looking pretty and I'm getting down to the finishing touches.  That will keep me busy.

Any time you need to talk or vent or complain or to celebrate, I am here for you.

We'll be doing the Happy Dance before you know it!!!!

Katie
Title: Re: Harvoni Side effects
Post by: Tpropane on February 23, 2015, 03:43:46 am
I take my pill at 6 am.I set my iPhone alarm. I take it with a probiotic shot and water that I keep next to my bed. I usually go back to sleep until 7:30 or so. I feel like what ever side effects there might be...I'm far into them or beyond them by bed time. The one thing I don't want to do is lose healing sleep.Starting Week 5 of 24 weeks on Harvoni - I feel so much better. I haven't gotten my 4 week blood-work back yet. (Hopefully tomorrow)  but at 2 weeks I was 174. I kind of feel more energized. I am, however, eating and drinking healthier than I ever have in my life!. I was practically bedridden at the start. But really feeling at the ability to get up and do stuff.I got a new juicer and the tumeric tonic and green juices seem to give me a boost. Coffee with a coconut creamer as I am trying to cut out dairy.My eyes are clearer. My face is less red, my pee isn't brown. Counting small blessings.
Tonight was Oscar Night and to go with another post. I had a glass of champagne. I am drinking lots of water to flush it out. It was stupid and reckless and I wanted more, I could have drunk the whole bottle. I have freaking cirrhosis! I really need to get a grip. So instead of beating myself up over it. I'm going to bed. I'm going to drink a lot of water. And wonder why Gilead isn't advertising at the Oscars or the Grammy's because I'll bet a full third of those people have HCV!
Title: Re: Harvoni Side effects
Post by: Tpropane on February 23, 2015, 03:57:31 am
ISLAND GIRL - before you miss one pill. You need the status of your liver. You are non naive. And therefore hit your doctor over the head with a club before you take the last pill. Confirm via, ultrasound, fibroscan or last case biopsy the status of your liver. You may need 24 weeks....OR NOT. Not would be great. But you need to know. WTF? Be your own advocate!!!
I went from nothing. To cirrhosis in 3 years. My doctor and I (I take full responsibility) sat back and did nothing after boceprovir failed. I think failing on boceprovir caused the rapid liver damage. But that is mere speculation. 0-60 like a Ferrarri.
Title: Re: Harvoni Side effects
Post by: SunIsOut on February 23, 2015, 10:30:34 am
My insurance declined the Ribavirin with Harvoni so I start tomorrow morning. Looking forward to getting this behind me!
Title: Re: Harvoni Side effects
Post by: Islandgirl on February 23, 2015, 11:04:59 am
Good morning!

Katie & Nicole, yes, I'm nervous too 8)  I have 3 pills left and will take the last one when my phone alarm goes off at 6:00 PM on Wednesday, the 25th!!!!!  Yes, that waiting period we're facing is gonna be tough!  Yes, we're gonna make it and have our Happy Dance 8)

Tpropane, I really appreciate your concern and comments.  I may not have put my past history/tests/etc all on line, but all needed tests have been done - including a past liver biopsy which showed stage 1 fibrosis (portal fibrosis) NO cirrhosis; no architectural distortion.  I've also had annual ultrasounds that have always been unremarkable or normal.  My insurance did require an updated viral load (like Katie's) and it was "less than 5 million".  I'm "treatment Naive" - Since I have 1b genotype I never took any of the previous treatments as the chance of success did not outweigh the risk.  I've managed with milk thistle and other healthy lifestyle methods until my GI and I decided the right med had finally arrived.  My insurance approved the 12 wk Harvoni, which my doc requested and I agreed with - with my  history and pretreatment tests results I doubt 24 wks would have been approved or needed. 

You're a sweetheart to worry about it - sorry I didn't put the rest of my history down for you to view.  I did receive the coveted "Not Detected" (UND) on both my HCV RNA PCR Quant and HCV RNA PCR Quant Log at my 4 wk lab results.  ALT 18 & AST 34 - remarkably improved over past tests!

It sounds like you're taking very good care of yourself, we'll look forward to hearing your 4 wk results soon.  Tell us about the tumeric tonic...  Holding positive thought for you as you move toward our shared goal!  hugs,  ....Islandgirl

PS to SunIsOut (love your boat pic)  Hooray!  Hope the fair wind sends you right to "undetected" 8)  Good sailing  ...Islandgirl
Title: Re: Harvoni Side effects
Post by: MEG on February 23, 2015, 11:17:05 am
Hi Nicole, Katie, Islandgirl and Tpropane...I read your posts and I got so emotional for you all......I can't imagine what it must feel like to be taking the last pill of this medication that you've been waiting for for so many years...

Just know that I am sending you light and prayers for a lifetime SVR.  You're such an inspiration. Hugs.
Title: Re: Harvoni Side effects
Post by: MEG on February 23, 2015, 11:18:15 am
SunisOut, Congratulations on your first dosing. Woo-hoooo. Keep us posted.
Title: Re: Harvoni Side effects
Post by: Islandgirl on February 23, 2015, 11:29:12 am
Thanks, MEG!  Wishing you smooth sailing too.  It seems almost impossible that I am almost at the end of my 12 wks, an "unreal" feeling - can't tell you how many times I've rechecked the date vs pills left in the bottle lol  Seemed like it would never get here, now it seems almost too fast.  In a good way 8)  I'll be looking forward to your progress too and sending that light and prayers for a lifetime SVR to you (all of you) too!  ....Islandgirl
Title: Re: Harvoni Side effects
Post by: MEG on February 23, 2015, 11:52:35 am
Thanks Islandgirl.! Here's to healed bodies, minds and spirits ------------and new beginnings!
Title: Re: Harvoni Side effects
Post by: hope4cure on February 23, 2015, 12:11:41 pm
With only 3 weeks left of treatment, I have come down with a pretty strong cold and chest congestion, which is pretty common this time of year. Last week I had an appointment with my doctor to go over my week 4 lab results which came back great, but I told her I was scarred to take anything for my cold. She says to start taking Advil right away. These medications do not interact with Harvoni. Combine this cold with my fatigue, it's been a rough last few days.

She also told me a lot of her patients are saying they don't want to take anything for the fear of somehow messing up the Harvoni medication. She assured me it was OK to take the much needed Advil and I have started to do so (though still at least 4 hours after or before taking the Harvoni, just my paranoia) though she did say it does not matter how close together I take each pill.

She also asked about any side effects and was surprised to hear of the fatigue I am experiencing. She says I am her only patient of about 75 people that have this. She has about 3 patients who reports head aches. That's only about 6% of people with side effects

It really does look like anyone who experiences side effects are the minority, which I think is a good thing for anyone who may be scarred to take Harvoni. I know everyone will react different to it, and people on this post do have some tough side effects, but don't let that deter you because I think many more people do not have any side effects at all and that seems like a good risk to take especially with up to a 97% cure rate.

Just my opinion at least from someone who is on Harvoni and does have a side effect from it.
Title: Re: Harvoni Side effects
Post by: Kathy C on February 23, 2015, 12:42:03 pm
I am now on day 6 with Harvoni
  I too am thankful to be approved for this medicine.
I am taking my Harvoni pill at 7 pm every night. Yesterday I noticed a couple of cold sores on my upper lip, I do not know if it is a side effect of the drug ( I used to get cold sores on my lips but haven't for several years up until now.) I also have had diarrhea a few times, don't know if this is a side effect of Harvoni or if I have picked up a bug.
I have probably have had Hep-C since 1971 when I had a blood transfusion when I had my son, but did not find out that I had Hep-C until 1996 when my liver  blood work work showed higher levels than normal.
This is my third attempt to rid my blood of the virus, the first time was in 1996 and 1998 I was in a double sided trial, it did end up that I got the hep c medicine that was later approved by the The FDA.
Also my second time with a Hep-C treatments was last fall, it was on Solvidi and ribavarin and peginterferon injejections. After 6 weeks I was so sick, constant vomiting and diarrhea and terrible nausa for 1 whole month, I lost 14 lbs and finally my Infectious Disease Dr had to take me off the treatment.
Now I am taking Harvoni .treatment for 12 weeks, I hope and pray that this treatment does work in me
. I am scared but excited at the same time.

I pray for all the people with Hep -C that they will be able to rid themselves of this terrible disease.  God Bless.    KathyC
Title: Re: Harvoni Side effects
Post by: Rexray on February 23, 2015, 12:58:36 pm
...I have a good feeling this will be your time to cure Kathy.
Harvoni at 97-99% cure rate is a pretty good indicator.
Keep us posted.
Sorry to hear you went through all that previous Hell.
I have a lady friend that went thru trials 2 years ago and it was the worst experience of her life.
Though she is a different genotype, my medical papers indicate that there should be similar meds coming out soon for the other genos.
Go reserach!
Title: Re: Harvoni Side effects
Post by: Mugwump on February 23, 2015, 01:21:46 pm
I'm starting to feel a bit nervous again. It's the last two days of treatment for me and all these things are flying through my head. I never found out what my viral load was at the beginning and my doctor said I don't have cirrhosis so I should do 12 weeks, but we haven't tested for that in years I don't know how she would know. I've never done a biopsy and the last time I had an ultrasound I can't even remember when it was. I'm seeing her tomorrow.  Should I ask her all of these questions and make sure it's conclusive why I've been doing the 12 week program?

Nervous and hopeful!
Nicole

Nicole, Katie, Here is a really big hug.

Sometimes it does seem as if someone is rolling dice and yes sometimes snake eyes happens. But  96% is still the best shot we have every had and you won't get them kind of odds in Vegas! ;D

Even if I am in the small group who do come up snake eyes I will not mope and fret this time, there is too much to do in the time I have left on this planet regardless and I will do it. I want to leave here having left something, even if slight,  important for future generations. One cannot do more than this IMO.

Rant begins here;

For one I am doing a raindance for the west coast of North America and encourage others in this endeavor. If we have another dry summer season here things could get very bad for the remaining native salmon stocks on Vancouver Island, the lower mainland, Washington State, Oregon and California. So a summer rain dance is called for.

Oh and I will shoot my truck and remove the license plate and walk everywhere I go or only take the dreaded and maligned BC public transport system. A system that gets bad press especially from our overlord car sales oriented upper political management system of government.
Yes, Milo Minderbinder is still alive and well pulling the strings here in BC from his yacht outside Vancouver.

end of rant

We all need a good laugh and this is what I am working on. It is rather esoteric but that is my nature, trouble is Mozart already has Emanuel Schikaneder so I have had to do the libretto myself.

If anyone here has experience writing for the musical stage please shoot me a PM

Eric

 

Title: Re: Harvoni Side effects
Post by: nicole_1234 on February 23, 2015, 02:53:15 pm
Island Girl I believe Tpropane may have confused my post with your name. Rest assured I saw my doctor today and found out my starting viral load was 620,000 and she is sure I don't have cirrhosis because my blood work was very good before treatment. I think it's just my last minute nerves about everything going well and feeling as scared to stop treatment as I was to start it. Sometimes confronting fears and expectations are the hardest things to do.

2 more pills and then my doctor has allowed me to do a 4 week blood work. She could not confirm that SVR 4 means a 98% chance of cure as some have written here, but will call Gilead to confirm. To me it's just one more hurdle to be sure I have beaten this thing, and I think if it will come back in 4 weeks I'd rather know then, than wait a whole 12 to find out.

Title: Re: Harvoni Side effects
Post by: Lynn K on February 23, 2015, 03:13:11 pm
Hi Nichole

Did you have a fibro sure test that is the only blood test that can attempt to determine cirrhosis other than that it is a fibro scan or a biopsy to determine cirrhosis as fat as I have heard.

My ALT and AST have been just very slightly above normal for years the only test I have that is low because of cirrhosis is my platelet count of 90 and when I first was diagnosed with cirrhosis even my platelet count was in normal range.

Not saying you could have cirrhosis just wondering how your doctor could say you do not based on only blood tests.
Title: Re: Harvoni Side effects
Post by: Katie on February 23, 2015, 03:18:11 pm
Nicole, you aren't alone in your fears, believe me.  Your VL is so low, I am sure you will be fine.  My first test almost 10 years ago was over 4 Million, and couple years later it jumped up to 16 Million and then came back down to 5-3 Million and at beginning of treatment was the lowest at 2.6 Million. 

So instead of slowly increasing as you would think, it bounced all over the place.  95% of the time my ALT/AST were in normal range, so I am sure my supplement regime with Omega 3s, Milk Thistle and lecithin granules really helped getting it under control.  I have felt like I was on a roller coaster ride but the last couple years I felt so terrible so am very grateful and optimistic that this is it.  I get those thoughts of doubt with anxiety as I don't want to go back to that, but I just remind myself of the statistics and the knowledge I have gained and know whatever the outcome the future looks so bright compared to just 2 years ago.  All is good.

I have a VL test at EOT and then wait for 12 weeks.  That's when my nerves will need support and I need to fill my time with gardening and nuturing and maybe even some fishing time.   8)  Fishing doesn't count against your time on earth you know!  That's what my grandpa told me and he lived to see 100 yrs so I believe it.   ;D  :D  ;)

Our HAPPY DANCE is coming.  We just have to be patient and be good to ourselves.

Back to painting......

Katie

To Island Girl too.  Love you both and you are my Sisters in battle!  Awesome warriors!
Title: Re: Harvoni Side effects
Post by: Katie on February 23, 2015, 03:22:33 pm
Nicole, Katie, Here is a really big hug.

Sometimes it does seem as if someone is rolling dice and yes sometimes snake eyes happens. But  96% is still the best shot we have every had and you won't get them kind of odds in Vegas! ;D

Even if I am in the small group who do come up snake eyes I will not mope and fret this time, there is too much to do in the time I have left on this planet regardless and I will do it. I want to leave here having left something, even if slight,  important for future generations. One cannot do more than this IMO.


Thanks for the hug and encouragement Eric.  Your positive attitude helps all of us and I send a hug back, but be careful because I have been painting again.  Almost done but I tend to get almost as much on me as the walls.

Katie
Title: Re: Harvoni Side effects
Post by: nicole_1234 on February 23, 2015, 07:45:18 pm
Yes thank you katie and Eric for the encouragement, it really helps.  Eric I feel the same as you, I will live to the fullest potential no matter what. I feel better today. (although bad headache because I didn't sleep well). But emotionally better.

Lynn, they just got fibroscan at my hospital and haven't used it yet. I cannot be 100% sure you are right without the biopsy, but my doctor has never seen cirrhosis with someone like me with high platelets and overall good stats. Judging my overall health, AST/ALT, etc I'd say she's using her experience and common sense to determine this.

I know some will say I should be more diligent, and that I could be one of the few people who show absolutely no sign but based on my age and how long I've had it and stats I'm going to trust my doctor on this one.

My father died liver failure due to Hep C and alcoholism so I take this seriously. I just had a moment of panic, but I am confident I am doing the right thing by believing my doctor and going for the 12 weeks.

Title: Re: Harvoni Side effects
Post by: dennyhil on February 23, 2015, 07:46:45 pm
Hi Folks,

Just got back from my consultation to qualify for Harvoni.  This is my 2nd of many posts.

Its comforting somewhat going back in after devastating relapse and the doc knows, the nurses know me..  Anyway - long story short.  My doc is "highly confident" that he can qualify me for Harvoni.

I was F3 10 years ago.  He's saying I'm now F4 Cirrhosis(unspecified) and he gives me 90% chance of being cured with Harvoni Ribaviron combo.

Anyway.. I'm off and running - he says it will take a month or 2 to qualify..
Title: Re: Harvoni Side effects
Post by: nicole_1234 on February 23, 2015, 09:23:02 pm
Good luck Dennyhill, I hope you will get it:)

I just did a Google search to see any new stats on Harvoni and its kind of depressing. If you look at news results it's all about stocks and how much money it's making (billions). Nothing about lives it's helping or real people who can't get access because of the cost.
Title: Re: Harvoni Side effects
Post by: Keanu2015 on February 23, 2015, 09:34:28 pm
Hi Denny,

        It took me a little over a month to get approved. I'm F-4 also but treatment naive. I'm on day 4 of 12 weeks. My Harvoni was covered by my ins. - Humana Medicare Advantage and co pay was covered by PANF.

I agree Nicole, right now that's all you're seeing. The economics on this is easier to predict and evaluate based on decisions being made by the large corporations. You and I and everyone else on here are Harvoni's first giant group of medical statistics that will be big time news as 2015 gets into the later months. Hopefully they will be opening the champagne bottles when the cure rates are off the charts amazing!!
Title: Re: Harvoni Side effects
Post by: dennyhil on February 23, 2015, 09:59:53 pm
Thank you Keanu and Nicole..

Very interesting the investing side of this thing.. Believe it or not, it was an investing newsletter where I first heard of this.   My doctor today was very upbeat and positive about this drug.  I said "I'm here to talk to you about the miracle drug"  He just smiled and said "Indeed it is a miraculous drug". 

Think about a lifetime Gastroenterologist that has been trying to help people battle this disease for ...How many years?  I first met him 10 years ago and this is what he was doing.  He tried to help me then with the best method available..  Of course I relapsed.  How many relapses has this man seen?  How much pain and heartache?  How many deaths?  How much loss of hope?   Now he can administer cures.  He had a big smile on his face talking about this drug..

Then we had the talk about insurance companies and the battle for approval.  He's in the trenches fighting for us, he received a grant to help him prove that Harvoni will be long term cost effective..  It was encouraging knowing that guys like this are in the trenches going to war everyday to help people get the medication that they need to prolong lives, live healthy.  He did say it was a battle getting approval, but he was confident that I'll get approved.  Hope has returned..
Title: Re: Harvoni Side effects
Post by: SunIsOut on February 23, 2015, 10:47:27 pm
Thank you Keanu and Nicole..

Very interesting the investing side of this thing.. Believe it or not, it was an investing newsletter where I first heard of this.   My doctor today was very upbeat and positive about this drug.  I said "I'm here to talk to you about the miracle drug"  He just smiled and said "Indeed it is a miraculous drug". 

Think about a lifetime Gastroenterologist that has been trying to help people battle this disease for ...How many years?  I first met him 10 years ago and this is what he was doing.  He tried to help me then with the best method available..  Of course I relapsed.  How many relapses has this man seen?  How much pain and heartache?  How many deaths?  How much loss of hope?   Now he can administer cures.  He had a big smile on his face talking about this drug..

Then we had the talk about insurance companies and the battle for approval.  He's in the trenches fighting for us, he received a grant to help him prove that Harvoni will be long term cost effective..  It was encouraging knowing that guys like this are in the trenches going to war everyday to help people get the medication that they need to prolong lives, live healthy.  He did say it was a battle getting approval, but he was confident that I'll get approved.  Hope has returned..

Nice observation Denny!  Easy to overlook the care provider perspective and I do bet that they have a renewed swagger in facing a patient and saying "We can take care of this for you now".  It is good for everyone. 

In terms of the economics it is a market driven economy.  You have almost zero major bio firms working on new antibiotics as there is no supporting market for it. Kind of sad but this is where our government does or could play a role.  Sometimes the needs of the people are beyond a single company and Nuclear Power is one example where we are so far behind the French it is not even funny. It will take our government to subsidize these type of causes.

Thanks for posting.  :)
Title: Re: Harvoni Side effects
Post by: Katie on February 24, 2015, 12:19:38 am
Hi Denny.  I have a wonderful doctor as well and he has been dealing with this virus since it was discovered and is also a great advocate for patients and SO excited about Harvoni and the results we are all expecting.  He didn't even wait for a denial from my insurance but wrote a letter and got me the 12 weeks without an argument.  When I was diagnosed, almost 10 years ago (and who knows how long I had it or where it came from), it was very grim and he gave me all the facts and didn't push me to try the treatment.  Just made me aware of it.  After our discussion I said no thanks, and I think he was actually relieved since the "cure rate" was so low for GT1.

Hope your approval comes through quickly and you are on the road to eliminating this alien virus and get your health and vigor back with all of us.

Welcome to our forum.  It is a blessing.

Katie
Title: Re: Harvoni Side effects
Post by: Lynn K on February 24, 2015, 12:49:34 am
Hi Nichole

I was not suggesting you have cirrhosis just was concerned about the limited testing but as you have had hep c for much less time then me and your platelets are good it is less likely you have progressed that far.

Like I said my ALT and AST have been only slightly elevated for years. January 2014 before doing any recent treatment my ALT was 78 and my AST was 54 just above normal and yet I had cirrhosis for 6 years when that test was done while my platelet count at that time was 99.

Good that you have a doctor you feel confident in that is most important.

Anyway hope you are successful on treatment and everyone else too for that matter and we can all put hep c behind us!
Title: Re: Harvoni Side effects
Post by: nadewitt on February 24, 2015, 09:13:16 am
Hi everyone. Three weeks ago I had been denied treatment twice, had appealed 12 times. Finally the insurance told my doctor that no matter what they sent in, there was no way I was getting this medicine. I work for a city that is self insured and just has the insurance company manage our benefits so I tried going through our insurance representative. They were told I could only get Sovaldi. Since I failed with incivek-interferon-ribaviron I really didn't want to go that route again. My HR department filed an exception and I was approved for the Harvoni. Two days later my insurance company announced that Harvoni was it's drug of choice and my copay dropped from $40 to $25. Two days after that Gilead sent me a letter saying they would foot the bill for my treatment because I have cirrhosis and have failed treatment twice and couldn't get treatment! Can't take advantage of that now since my insurance will cover it.
I envy all of you who have good, caring doctors. My first 2 experiences were with a doctor who let his nurse take care of me. Most of the time they got me mixed up with other patients. I had to get help with the side effects from my primary physician since when I called about the horrible nausea I was told to drink soda and eat crackers. They ordered labs but ignored the results. My hemoglobin kept dropping and they just ignored it. I was continuing to work and I got so bad my supervisor got me an appointment with a hematologist. My last appointment with the liver doctor I told him I was going that same day to see the other doctor. He stormed out of the office. I went to the other doctor and he hospitalized me and ordered transfusions. I had finished the Incivek but was supposed to continue the ribaviron and interferon for several more months. While in the hospital they wouldn't let me take the medication so when I got out I called the liver doctor to see what I should do. I was told I was no longer welcome in their clinic so my treatment ended. I had been UD but the virus came back with a vengeance. I watched the different companies with their trials of new drugs and decided to jump in again with the Harvoni. I had to find another doctor and there was only one other clinic in my city. The doctor is not caring or supportive. I have to leave messages when I have questions and most of the time I don't get an answer. That is why I was so glad to find this web site. Well, sorry for venting. I am now on day 10 with treatment and besides the constant headache and acid reflux (I've had to start sleeping sitting up) I am doing fine. Thank you to all of you for posting about your experiences.
Title: Re: Harvoni Side effects
Post by: mario555 on February 24, 2015, 09:38:20 am
Sorry to hear about all your problems and happy to hear you are on your way to a cure!
I can definitely relate to your story with your he pathologist, I had a similar support.... I became real good buddy with his secretary/nurse. Just keep taking the pills, the side effects will rapidly recede. Drink water, it's your best ally!
Title: Re: Harvoni Side effects
Post by: Draga on February 24, 2015, 10:36:02 am
Day 5 of Harvoni and the fatigue can be intense at times but after a year of fatigue I'm kinda used to it. No other side effects to speak of but only 5 days into a 12 week program. Wish all of you the best,,,
Title: Re: Harvoni Side effects
Post by: nicole_1234 on February 24, 2015, 10:44:01 am
Nadewitt, what a battle you've been through! Happy you were able to get Harvoni finally and wishing you the best for recovery and the road to being finally cured!
Title: Re: Harvoni Side effects
Post by: Keanu2015 on February 24, 2015, 11:24:58 am
Hi Nadewit,

      My goodness you've been through a lot! Well thank goodness you got the Harvoni and made it here onto this forum! We are happy to hear from you. My doctor just wants to see me when it's all over too that's why I'm here. I'm on Day 5 of 12 weeks. I've learned a lot here already and looking into all of my options for proper medical care. If I need to go to a bigger city for a Dr. who will take me through this thing following the correct protocol then so be it. My doc seemed more interested in pushing me to a colonoscopy than reviewing my blood work at proper intervals! I told him I know I'm 50 but that can wait! Btw Day 5 is much better than day 4 was :) Hope everyone is doing well today!
Title: Harvoni Appeal Process
Post by: Rexray on February 24, 2015, 11:27:43 am
If there is not already a thread on the ins and outs of getting through the Harvoni appeals, maybe there should be one

Here's basically whats happened in my case.
I was with United Health Care until October 2014, right on the cusp of Harvoni coming out on the market. UHC is on-board with Harvoni.

I had an appointment with my UCLA Hep Specialist in November to get the prescription.
Then my company's contract was taken over by another company, so my health care changed to Premera Blue Shield.

The UCLA doctor prescribed it and of course, Premera denied it, basically because the Express Scripts deal came along for AbbVie in the interim.
( http://www.reuters.com/article/2014/12/22/us-express-scripts-abbvie-hepatitisc-idUSKBN0K007620141222 )

After the first denial, my doctor sent his case studies along with my personal HepC status and within a few weeks I was approved by Premera.
I got the complete appeal and approval in the mail.
I have to say it is very comprehensive on both sides.

So, from what I know, your doctor needs some very specific reasons, as well as the HepC/Harvoni vs AbbVie medical research to back the appeal.

Also, my doctor uses Quality Specialty Pharmacy (http://www.qualityspecialtypharmacy.com) who have been very conscientious in communicating with me through this process.

My advise, for what it's worth, is to find a doctor that is well involved/informed with HepC studies and knows the options before you get the prescription submitted to your healthcare provider.

In my case, I just lucked out having seen this particular doctor some years back who has kept me updated on the options. As I said earlie, he happens to be one of the top Harvoni trials doctors. I am welcome to share the details if you PM me.

It's all a money game. Good news is that Gilead is coming around to challenge the market to give us some hope.

(http://www.fiercepharmamarketing.com/story/how-big-are-gileads-hep-c-drug-discounts-enough-spook-investors/2015-02-04)

Big bonus, in the end my co-pay is zero thanks to how my pharmacy handled it.
Man this is going to be a good year!!!  ;D

Title: Re: Harvoni Side effects
Post by: Mm on February 24, 2015, 12:15:55 pm
I'm pleased to report that my severe headaches, which began during my second month of treatment with Harvoni,  have almost gone away. From week 5 -7 they went from mild headaches to strong nonstop, non responding daily headaches. My physician prescribed a small course of pain medication to break the cycle. It took a few days, but it worked. I'm just abou to start my last 4 weeks, of a 12 week course of Harvoni and the headaches, if any at all, are mild and tolerable without medication.

Type 1a
Detected 1990
moderate fibrosis
Non responder to Interferon 1992
Viral load 5,900,00  / undetected 8 weeks
Mm

Keep Fighting The Good Fight.  We will win this battle with the beast! 8)
Title: Re: Harvoni Side effects
Post by: SunIsOut on February 24, 2015, 12:33:50 pm
Wow these doctor stories are something else! I am at John Hopkins Hospital and they have an online system where I can email doctors and nurses. They are super responsive and send me my appointments in the mail and I can read my labs from them as well. I wrote last night about the Vit D and they said I could take the recommend dosage,  they would add it to the labs and that I am very healthy.

I wish all the doctors were like this and these folks are really good.

I took my first dose this morning.  No headache but man did I start getting stomach nausea. I took it at 8:00am with yogurt and strawberries and slept till noon.

Our bodies are all so different.
Title: Re: Harvoni Side effects
Post by: Karen1124 on February 24, 2015, 01:57:21 pm
I keep reading about everyone eating fruit and yogurt and sugary stuff my doctor said only 20 grams of sugar per day is allowed is that because I have cirrhosis he said sugar is metabolized exactly like alcohol anyone got any feedback on that?
Title: Re: Harvoni Side effects
Post by: SunIsOut on February 24, 2015, 02:13:20 pm
I keep reading about everyone eating fruit and yogurt and sugary stuff my doctor said only 20 grams of sugar per day is allowed is that because I have cirrhosis he said sugar is metabolized exactly like alcohol anyone got any feedback on that?

I was not advised to change my diet at all but to just keep eating healthy. I limit processed foods and no fast foods.  I prepare 90% of my meals from home except when I travel.
Title: Re: Harvoni Side effects
Post by: Katie on February 24, 2015, 02:38:09 pm
That's a scary thought as I have had a real sweet tooth on treatment and admit that I have indulged a bit.  Remember the Chocolate cheesecake I said I was going to make?  I did and it was delicious.  I shared it with the carpenters when they were working, but I ate my share.  Gosh it was good!

Katie

Actually it was chocolate raspberry!  My own raspberry jam!
Title: Re: Harvoni Side effects
Post by: SunIsOut on February 24, 2015, 02:50:07 pm
I keep reading about everyone eating fruit and yogurt and sugary stuff my doctor said only 20 grams of sugar per day is allowed is that because I have cirrhosis he said sugar is metabolized exactly like alcohol anyone got any feedback on that?

You sure do learn a lot on this forum.  Seems 100 years ago we average 15 grams of sugar a day and now 155 grams due to sodas( I do not have them) and other processed foods.  I did read up on this and Karen you are right about sugar contribution to fatty liver and non alcoholic cirrhosis.  Big eye opener for me.  I did see that there is a natural sweetener called Stevia from a plant that has 0 calorie, 0 sugar (glucose) and has been submitted to the FDA as a substitute for fructose type sweeteners that are the toxic ones.  Carghill and Merisant are two companies with FDA approvals pending.

Here is more on Stevia

http://articles.mercola.com/sites/articles/archive/2008/12/16/stevia-the-holy-grail-of-sweeteners.aspx (http://articles.mercola.com/sites/articles/archive/2008/12/16/stevia-the-holy-grail-of-sweeteners.aspx)

Thanks for posting Karen.  Definitely got my attention.
Title: Re: Harvoni Side effects
Post by: Katie on February 24, 2015, 02:58:04 pm
Thanks Sun the sailor!  I guess I had better pay more attention and will read your article.  I don't eat a lot of sugar but do quite a bit of fruit and absolutely no soda or processed food, but I do make some low sugar oatmeal cookies with lots of different dried fruit, coconut(organic not sweetened) and nuts, so the dried fruit adds sugar too.  I figured it was a healthy alternative for desserts or ice cream.  May have to rethink that.

Thanks!

Katie
Title: Re: Harvoni Side effects
Post by: Karen1124 on February 24, 2015, 03:24:27 pm
Hi Katie and Sun is out,
I was drinking smoothies and all organic and eating all organic food  vegetables and meat. the doctor that did my biopsy send me to the hep C doctor. He first asked how I ate I told him then he told me about this was in July 2014 he said that it would be coming out in October or November and then he's going to a convention December!he said that this treatment should be perfect for me and that I needed to get prepared and change my lifestyle the first thing he said was that fruit has sugar and that to limit my sugar 20 grams a or less per day.and that I needed to walk or exercise everyday and 2 or 3 days a week resistance exercise.he said if I do what he tells me that my numbers in December would be almost normal.and they were they went down from ast being 235 ASL being 168 to ast 42 and ASL 64 and better than that I felt better since the month after I knock the sugar out and started exercising then I have felt in years!
Title: Re: Harvoni Side effects
Post by: MEG on February 24, 2015, 03:43:15 pm
Hi all..

@nadewitt, my goodness. You are one strong person. I'm so sorry you went thru such horrors with your doctors. But I'm also happy that you're on the Harvoni and on your way to saying good bye to HCV and the healing that will ensue.

@Sun---indeed, I also feel lucky. My hepatologist and his staff are wonderful. They answer emails within the hour or by the end of the day, at the latest.

Mm...omg, you had to endure all those headaches. It's amazing how we all react differently. Here's to a smoother ride to the finish for you!


Title: Re: Harvoni Side effects
Post by: Katie on February 24, 2015, 03:46:05 pm
Karen, that is good to know.  My ALT/AST numbers have almost always been normal for 9 years since diagnosed and were perfect before that.  Every once in awhile they would go just above normal range, like in the 50's-60's and it was usually when I was fighting a cold or flu.  Mine were normal when I started treatment.  And you are right about fruit...sugar is sugar, it's just with whole fruit there are many benefits so I certainly am not going to cut them out.  I have a grapefruit usually for breakfast and sometimes an apple, orange or banana and often my wild frozen berries for an afternoon break.  In the summer I really like getting hydrated with the melons and peaches.  I think the key is, moderation in all we eat and do.

2 pills left...tonight's and tomorrow and then it's blood work time.  WOW that went by fast and to say the least, I am nervous.  Since on treatment I have remodeled my 2 back rooms doing all the painting, and trim myself.  Just a bit more to do an I can start organizing.  I go at it slow, but it is progress and I will be SO happy to straighten up my house.  It's like a war zone and a bit overwhelming.  If it hadn't been for that, I would have probably put it off until later, but at least it kept me moving!

Hope all is going well with you and thank for the information! 

Katie
Title: Re: Harvoni Side effects
Post by: MEG on February 24, 2015, 03:54:42 pm
@Karen, Katie, Sun,

Re: sugar. Ya, back in the day, 20 years ago when my initial symptoms were sinusitis(Katie and I talked about this a little bit over the w/e), I went to see a nurse practitioner who told me to cut out all sugars because of its inflammation effects and that it may feed whatever organism is causing the fevers/fatigue/sinusitis.  I'd also read about Candida and I began cutting back even further.

Over the years the data about insulin resistance and sugar started coming out---giving me another reason to stay low sugar.

Indeed, they are finding that raw sugar and high glycemic fruits like bananas, grapes, contributes to the inflammation in the liver(that's already there fighting the hepC) and even can contribute to athersclerosis. Ouch...

Except for special occasions, I don't have raw sugar and just one piece of fruit per day. But, but....I just cannot, will not give up the sugar in my one mug of decaf coffee!!

I've resorted to Xylitol. It has a better glycemic index and tastes just like sugar. 

I tried Stevia. I can't find a formula that doesn't have a bitter after-taste. Some people don't find it bitter....

Agave syrup? A no-no.....the natural health marketers really hood-winked us on that one. Like high fructose corn syrup, it is metabolized primarily in the liver and is actually worse than raw sugar for those of us with liver issues...

Katie, your cookies sound wonderful. Yummm.
Title: Re: Harvoni Side effects
Post by: MEG on February 24, 2015, 04:02:41 pm
Katie: re: sinusitis. I'm seeing my PCP tomorrow to have my 4 week on-treatment labs done.

Since yesterday, my cold has progressed to severe sinus pain---even in my cheek bones. Because I didn't want to take a decongestant(I did do a long hot steam shower) 4 hours before nor 4 hours after Harvoni---it was horrible sleeping last night(I take H with dinner). 

I think I need antibiotics. I've been "nursing" this since October---drinking more water than ever since Harvoni, and with the pain and inflammation spreading further into my sinuses(in addition to the malaise, muscle aches of what I've been calling a cold)-----what do you think?

I haven't taken antibiotics in years but I'm also afraid that being sick during this Harvoni treatment(begin week 5 tonight) may compromise my immune system's ability to "help" the H to do its job....

Do you know if antibiotics used for sinusitis are Ok with Harvoni?
Title: Re: Harvoni Side effects
Post by: 575to505 on February 24, 2015, 04:07:48 pm
Hello all! I'm 1 week and 5 days in with Harvoni and I was wondering if anyone is having issues with your tongue. My tongue feels a little numb and or tingly. It's strange, kind of hard to explain.
Title: Re: Harvoni Side effects
Post by: Keanu2015 on February 24, 2015, 04:36:38 pm
Hello everyone,

         Meg I think your doc may be able to prescribe an anti-bacterial solution to your problem that doesn't affect your Harvoni. Hope your PCP appointment goes well!

Day 5 -I have less and less pain and discomfort in my liver area day by day but today I've been feeling pressure in my kidney areas both sides of my lower back /inside. Even though I'm sucking down the water all day I have to push a bit to get it out. I have a feeling it's because there is a massive amount of dead cells and virus coming through and could be slightly overwhelming my urinary system. Has anyone else experienced this?
Title: Re: Harvoni Side effects
Post by: Katie on February 24, 2015, 05:06:35 pm
Meg...sorry to hear that.  Be sure you ask the doctor specifically about the type of antibiotics. I have found they get so used to prescribing a certain kind for a certain infection they forget our liver's are compromised and so I don't have a problem questioning them about it.  My pharmacist is really up on that and he always checks too.  Sinus infections can require strong antibiotics so be sure they check it all out.  I had a difficult time getting rid of mine and it lasted a good year.  I was SO sick, coughed my brains out and developed a hiatal hernia from it.  I hope yours doesn't get to that stage but it sounds as if you are brewing one up.   :(  Let me know how it goes.

575:  My tongue was OK but the tip a bit sore.  I just figured I scalded it on hot soup but my teeth ached for about a week with no reason.  Be careful you don't get Candidis as I had that because of the sinus infection and Hep C AND low level of Vit D (which is common in Hep C patients).  Hope you get some answers from your doctor!

Keanu,  My urine was really strong smelling for awhile...noticeably so.  I'd be really careful with the kidney thing  That almost sounds as if the prostate could be involved????  The virus cells are really microscopically small requiring an electron microscope so I don't think the dead ones are clogging up your system but I always say "Everything is connected" so Harvonie could definitely affect your other biological functions, I guess.  Maybe you are just having an issue changing your diet and not using all of your supplements and green drinks.  If the pain gets worse or the urine flow stops, please see a doctor!

I wish all of you relief from your pain!  You too nadewitt.  So much suffering and such a variety makes you wonder what is from Harvoni and what is just a coincidence.  Be diligent with your doctors and question them and make sure they are listening.  Many just focus on one issue and fail to look at the whole person.

Blessings and please take care!

Katie
Title: Re: Harvoni Side effects
Post by: Keanu2015 on February 24, 2015, 06:09:45 pm
Hi Katie,

     Thank you so much for sharing your thoughts and experiences with us. The prostate was checked and in perfect condition just a few months ago. This thing is definitely related to Harvoni or going cold turkey on my ultimate meal and vitamins. Its not stopping my flow just feels fuller all the way around the inner workings. I don't have an open comm. with my gastro doctor. Especially on Mon and Tues when he's in the hospital. I will consult with my PCP anyway to be safe. Thanks again Katie,
I hope you're doing well today!
Title: Re: Harvoni Side effects
Post by: 575to505 on February 24, 2015, 06:18:47 pm
Katie,

Hi and thanks for your reply. What is Candidis? I am already low on Vid D so I've been on a supplement for some time now. I will talk to my doctor about it when I go in in a week or so.
Title: Re: Harvoni Side effects
Post by: Katie on February 24, 2015, 09:00:02 pm
575  Hi! I spelled it wrong.  It's Candida.  Opps   It a yeast infection and can be systemic.  Your mouth gets heavily coated, especially your tongue and it is a pain to get rid of.  Candida thrives in a alkaline system which is often brought on by taking antibiotics. It likes all mucous membranes and antibiotics and diet affects it. I have no idea if Harvoni affects the pH, but haven't read anything about it so I am assuming it doesn't. 

I had it really bad during my sick period with the year long sinus infection which I mostly contribute to the low Vit D level, which affected my immune system and the Hep C (but I didn't know I was infected at that time) and then I was on and off antibiotics for an entire year.  It was horrible.  When my blood work came back my ALT/AST was off and that led to my Hep C diagnosis.  Then I thought, No Wonder I have felt so horrible!  Getting my Vit D level to 40 made all the difference in the world but I can't get it higher than that.  They are finding "D" is indicative of all sorts of health issues and am so glad they are paying more attention to it.  I still had hep C symptoms of fatigue etc, but I no longer caught every bug going around.

This site gives you some information if you think it is a problem

http://www.thecandidadiet.com/ph-levels-candida.htm

Katie
Title: Re: Harvoni Side effects
Post by: dmclain on February 24, 2015, 10:34:23 pm
Hi everyone! I'm new here. Day 12 on Harvoni! Cant wait to be cured! 1st few days the fatigue was like nothing I've experienced before but its alot better I'm drinking monster drinks tho!? my question tho is can i take sinus meds my list of no nos doesn't  have it on there but i saw a comment on here say we cant take it?
Title: Re: Harvoni Side effects
Post by: Katie on February 24, 2015, 10:47:17 pm
Hi DM and Welcome to the forum.  You will find it is great to have support and feedback from those doing the battle right with you.  I don't know about the sinus meds and would ask your doctor or Gilead.  Will probably depend on what exactly you are taking and be sure to ask if there should be a time frame followed.

I have 2 more Harvoni pills to take for my 12 week treatment!  WOW it went so fast.  I found the side effect to be very mild but they did seem to cycle.  Basically I have felt better than I have in years with the exception of week 9 & 10.  Horrible fatigue and gloom and doom. Then one day I woke up and felt great.  So be prepared to have a bit of a roller coaster ride.  Others have experienced far worse side effects than I. 

Good luck to you.  Hope your treatment is easy sailing and we all march on to the cure.

Katie
Title: Re: Harvoni Side effects
Post by: dmclain on February 24, 2015, 11:30:54 pm
Thank you Katie! I don't want to do this alone. I have some more questions but they can wait its getting late! Really happy to be able to connect with others going through this! Good night all!
Title: Re: Harvoni Side effects
Post by: Lynn K on February 25, 2015, 04:54:44 am
http://www.livestrong.com/article/522701-is-sugar-from-fruit-good-or-bad-for-the-liver/#page=1

Most Americans fail to get the recommended amount of fruits and vegetables each day. You needn't worry about the sugar that occurs naturally in fruit if you're eating it in typical amounts, as it won't harm your liver. In fact, consuming fruits -- as well as vegetables -- as part of a nutritious diet promotes health. The same can't be said for fruit sugar, or fructose -- a commercial sweetener used to add a sweet taste to many foods. Evidence suggests it may promote fat accumulation in the liver.
Title: Re: Harvoni Side effects
Post by: nadewitt on February 25, 2015, 08:55:47 am
Thanks to all for your comments and support. Those of you nearing the end of treatment, I hope this really is the end of your fight with this horrible virus. I go for my 2 week labs on Monday. Curious to see what they show since the doctor didn't do any pretreatment labs. Luckily I had just been to my primary physician for my yearly checkup and she ordered labs to check my blood and thyroid levels. At the time we didn't know I was going to start treatment. I feel like all things are working for my good and I wish the same to all of you. I hope everyone is having a good day today!
Title: Re: Harvoni Side effects
Post by: Keanu2015 on February 25, 2015, 09:39:35 am
Good morning friends!

         Day 6... I woke up with not enough sleep (6hrs) and feeling some pain again upper right quadrant. Got boys ready for school, drank a 16oz glass of water and took my Harvoni. Chopped a cup of strawberries into a cup of Dannon vanilla -activia light (60 cal) yogurt and it was awesome! I'm having some decaff coffee (Folgers- simply smooth) with Fat Free milk and a couple tbsp of coffee mate creamer now...delish!  Pain is getting a bit better 3 hours in.
Katie I'm so happy for you! you've given me so much help so far ..not sure I'll be able to survive when you get cured and leave us! lol
Lynn that is fantastic reinforcement info on the fruits and veggies as I worried about the fruits a bit but still thought they were ok in moderation. About the prohibitive stuff.. Lord knows we have plenty to watch for if we want the optimum chance to be successful. Thank you!
Nadewitt sounds like you're in good hands with medical personnel and a bit of luck! ...we all need some. I still need to develop a plan for my steps moving forward. I haven't been given regimented direction. My Gastro is not a very hands on type. I'm getting most of my info myself right here from all of these wonderful people.
Dm- Welcome! I'll help with any advice I can as we go along here. I only had a touch of fatigue on day 4. I have had some sleepiness and headaches but not too bad so far. What are your stats? I'm GT A1, VL 4 million, F-4 cirrhosis 0.90, A3 Activity 0.89. Praying for you all! Destroy the alien invaders!
Title: Re: Harvoni Side effects
Post by: Mugwump on February 25, 2015, 11:28:33 am
http://www.livestrong.com/article/522701-is-sugar-from-fruit-good-or-bad-for-the-liver/#page=1

Most Americans fail to get the recommended amount of fruits and vegetables each day. You needn't worry about the sugar that occurs naturally in fruit if you're eating it in typical amounts, as it won't harm your liver. In fact, consuming fruits -- as well as vegetables -- as part of a nutritious diet promotes health. The same can't be said for fruit sugar, or fructose -- a commercial sweetener used to add a sweet taste to many foods. Evidence suggests it may promote fat accumulation in the liver.
HERE HERE!
HCV is not the only problem we need to deal with in the long term.
It is precisely because we concentrate sugars and refined carbohydrates that we have serious problems with obesity, diabetes, dental problems and a myriad of other problems that come with the over-consumption of refined carbohydrates.

There is nothing wrong with whole fruit and juices that do not contain added sugars. The problem is when you begin to prefer to remove pulp and do other things that concentrate the fruit sugars. What my mother did is to actually thin the juice out to the point where it would become almost water. This did two things, it saved a swack of money and it helped to not rot teeth.

Like salt, you can become desensitized to sugar and not even realize that you are actually consuming it in quantities way beyond what is healthy.

By actively reducing the quantities of salts and sugars your sense of taste will quickly start to improve. It is amazing how getting used to less salt and sugar will enliven your taste buds!

Try using bitter as an adjunct to flavour and watch what happens to your cooking. Use zests of fruit peels and your taste buds will not crave the actual sugars in fruits. Many great Chinese dishes do exactly this and balance things with the trinity of hot, sweet and sour by using the aspect of bitter. Tamarind is not sweet it is actually quite sour and bitter and when used correctly brings out the natural sweetness of foods.

Food science is an art and can help greatly to get over the North American addiction to junk foods! Most people who are hooked on junk foods do not even realize that yellow onions actually add sweetness to food when cooked and this is a terrible problem. It creates cooking habits that are completely wrong and create a viscous cycle of obesity with huge numbers of people who are taste bud challenged and crave sugars and fats.

This along with excess alcohol consumption is why there is an epidemic of cirrhosis. After we clear this disease we need to take this into careful consideration as those of us who have cirrhosis will need to take better care of out diet and get off the junk food treadmill to protect the levels of liver functions we have left.

Good foods nourish the mind and body and satisfies all ones needs, too much food does neither!

Eric



Title: Re: Harvoni Side effects
Post by: Katie on February 25, 2015, 01:52:37 pm
Good morning friends!

   
Katie I'm so happy for you! you've given me so much help so far ..not sure I'll be able to survive when you get cured and leave us! lol


Don't worry Keanu, Glad I can help.  I'll be around for another 6 months as my bloodwork continues and I still have to see what my end of treatment comes back at.  Then the waiting begins, and I am going to need support from everyone here.  Since I have felt SO much better taking the magic pill, I am nervous not having that security blanket anymore.  :-\  It's a good thing spring is coming and I can dig in the dirt and plant, grow and nurture, going back to my Minnesota farm girl background.  It is healing for me.

My last pill tonight.  I can hardly believe it!  So you are all stuck with me for awhile!  Don't Worry, Be Happy!  :)  ;)  :D
Title: Re: Harvoni Side effects
Post by: Islandgirl on February 25, 2015, 02:28:24 pm
Last pill for me tonight too Katie!  Hard to believe - and now the long wait, but aren't we all lucky to have this wonderful opportunity!  Definitely worth it!!!!  Thanks Katie and everyone else for the support and encouragement of our Forum Family.  Hugs, ...Islandgirl
Title: Re: Harvoni Side effects
Post by: Katie on February 25, 2015, 02:40:04 pm
Yes Island Girl!  Nicole and you and I are together in this so, starting and ending on the same day.  I hope you'll remain on the forum and we can compare notes and recover together!  You two have given me strength and  helped me.  Everyone on this forum has become very important to me.  Lynn, I admire you so much as well, along with so many.  Thanks to all!  And where is Mel?  A special thanks to Mike and Eric and Mario and Kate and Bob and Brad and Paul and the list goes on with so many encouraging me from the very beginning of my journey.  Too many to mention, but you all have a place in my heart.

Now I need to get back to my painting.   :D
Title: Re: Harvoni Side effects
Post by: Islandgirl on February 25, 2015, 03:21:48 pm
Katie, you've expressed my thoughts so well!  Now, if I could just get you to do my painting ;) LOL

Mel, could you please check in?  Hope you're OK.  You are needed and missed!

Yes. I'll remain on the Forum, I'd miss you guys too much and I need the reassurance we give each other.  No one will ever understand in the same way our Forum Family does.  Thanks again every one.  I love you guys so much.  ....Islandgirl
Title: Re: Harvoni Side effects
Post by: kate0b1 on February 25, 2015, 04:03:41 pm
hey girls, I'm  so happy for you and a little jealous ;), its so exciting to see everyone get done (did i mention i had 15 days left lol).
I think the hot springs sound like heaven, but I'm the hold list for that as well, as i just paid for a rather expensive trip to fla (at least it was warm and we were able to sun and swim).
@katie, now that I'm back i am moving on with the painting and am about 1/2 way done, this was more work than i thought it would be lol, but i so want it done before its time to play with the plants/flowers. (oh wait it has to be above 30 for that).
kate
Title: Re: Harvoni Side effects
Post by: kate0b1 on February 25, 2015, 04:04:16 pm
PS i am also wondering about mel, has anybody heard from her??

kate
Title: Re: Harvoni Side effects
Post by: dmclain on February 25, 2015, 04:59:33 pm
Hi everyone! Katie all I know is my viral count is 7 million the other info you guys talk about I will have to ask my doctor about I'm surprised it's not in my on line Beaumont chart? I have low energy you guys!? And my joint problems are back!? Lower back sacral area the worst? Anyone else is this normal and it the other info that I don't have important?  Oh and please all of you finishing Don't Krave Us! We need to hear about life after Harvoni!!! ;)
Title: Re: Harvoni Side effects
Post by: dmclain on February 25, 2015, 05:01:27 pm
*leave us lol
Title: Re: Harvoni Side effects
Post by: Katie on February 25, 2015, 05:26:43 pm
Hi everyone! Katie all I know is my viral count is 7 million the other info you guys talk about I will have to ask my doctor about I'm surprised it's not in my on line Beaumont chart? I have low energy you guys!? And my joint problems are back!? Lower back sacral area the worst? Anyone else is this normal and it the other info that I don't have important?  Oh and please all of you finishing Don't Krave Us! We need to hear about life after Harvoni!!! ;)

I always advise everyone to get hard copies of ALL of your tests for your personal records.  It is good to be able to read them over, compare and even check things you don't understand on this forum and online.  The moderators here are really helpful as are some of the participants.  The records will also come in handy in the future if you ever need to have your medical history available.  Remember these are your tests, on your health and the doctor's office shouldn't have any problem giving them to you.

Others have had joint issues with Harvoni, it seems.  I have lots of issues with joints and can't tell if it is worse or not with the treatment.

You can go through this thread and see what others have said on side effects.  If you go to the left corner at the bottom of the page you can click to see all the previous comments and there are pages and pages on this topic.  You probably know that, but it took me awhile to find it....then again I can be brain dead sometimes.  LOL!
Title: Re: Harvoni Side effects
Post by: Katie on February 25, 2015, 05:32:03 pm
hey girls, I'm  so happy for you and a little jealous ;), its so exciting to see everyone get done (did i mention i had 15 days left lol).
I think the hot springs sound like heaven, but I'm the hold list for that as well, as i just paid for a rather expensive trip to fla (at least it was warm and we were able to sun and swim).
@katie, now that I'm back i am moving on with the painting and am about 1/2 way done, this was more work than i thought it would be lol, but i so want it done before its time to play with the plants/flowers. (oh wait it has to be above 30 for that).
kate

Kate:  It's always more work than it seems.  You should see the mess I am living with!  Everything from my bedroom is in my living room and I look like a hoarder.  I am just finishing up the small landing going to the Bedrooms and bath, and then the guys will come in and finish putting in the baseboard and trim.  I am fixing a lot of little but irritating things I paid someone else to do a few years back  Really poor work.  I told one guy if he was a finish carpenter, I was a Master carpenter!  HA!

Good luck on your project and happy to have you back with us.  Bet the sun felt good.  Thanks for the good wishes and please help to keep me grounded during the 12 week wait.

Katie
Title: Re: Harvoni Side effects
Post by: kate0b1 on February 26, 2015, 06:19:25 am
@katie, right lol, my kitchen stuff is all over the dining room. I am trying to keep things i know i need out and around so I'm not searching. Thank god i hate to cook ;)
or i would be frantic at the mess, on the up side the part that I'm done looks great and is super clean !.
My anxiety has weirdly been missing (I'm not sure if i should look for it or not), 14 days left and I'm not feeling anxious about the long wait at all (yet). I am so happy we are all sailing through this with a min of problems.
I think we got this  :-*

kate
Title: Re: Harvoni Side effects
Post by: nadewitt on February 26, 2015, 09:17:56 am
This message is for 575 to 505, dmclain, Keanu2015, Rexray, Grodeestok:

I see that we all started taking Harvoni around the same time. I am on a 24 week program. Are any of you on that?
Title: Re: Harvoni Side effects
Post by: TTSP on February 26, 2015, 01:04:06 pm
Day one of 12 weeks!
Title: Re: Harvoni Side effects
Post by: dmclain on February 26, 2015, 04:56:35 pm
Day 13 of 12 weeks! How are you feeling?
Quote
Title: Re: Harvoni Side effects
Post by: TTSP on February 26, 2015, 05:04:08 pm
I'm feeling confident.
Title: Re: Harvoni Side effects
Post by: kate0b1 on February 26, 2015, 06:02:50 pm
@TTSP, i love that post  8)

kate
Title: Re: Harvoni Side effects
Post by: wa7uib on February 26, 2015, 06:09:50 pm
Here's to everybody on here that takes time to share their experiences with Harvoni. I have finished an 8 week regiment with it now. Today was my last one. My recent bloodwork was fantastic showing HCV undetectable ALT AST normal!!! I feel much better now with that nasty virus out of there. Although we will never undo the damage we have done to our liver there is no virus working on damaging it any further. And I must not leave out the one who is the best physician of all time, and who got me through all of this. Praise be to God.
Title: Re: Harvoni Side effects
Post by: TTSP on February 26, 2015, 06:13:25 pm
 :) Thanks@kate
Title: Re: Harvoni Side effects
Post by: TTSP on February 26, 2015, 06:14:36 pm
 :)@wa7uibCongratulations!
Title: Re: Harvoni Side effects
Post by: Keanu2015 on February 26, 2015, 06:19:42 pm
Hi everyone!

    Congrats wa7uib! and so right about God. I know I need him too. Hi Nadewit, I'm not but I"ll be with you for a while!

7 days! ....11 weeks left!

Beat it down friends! Best wishes to everyone!
Title: Re: Harvoni Side effects
Post by: Keanu2015 on February 26, 2015, 06:20:28 pm
Hi TTSP,

    Good luck to you!
Title: Re: Harvoni Side effects
Post by: SunIsOut on February 26, 2015, 07:08:56 pm
Day 3 no headaches. Little tired still no side effects to speak of as I was tired before.  I read a lot on sugar and seems that the label does not tell the whole story.  So I have been taking organic Stoneyfield yogurt and the 16 grams of sugar it gets divided by some glucose (used by our bodies cells), fructose (liver has to get rid of it not so good) and hybrid.  For yogurt most of the sugar is natural from the milk and the berries if added.

Since the labels do not break the sugar into types I am now resigned to just make good choices where fruits are glucose oriented, natural juices too!  I am not diabetic so I do not have blood sugar to worry about.

 wa7uib,  Our liver is the only organ that regenerates.  A partial liver transplant will grow to normal size quickly.  Ours will repair but eating healthy and wise life choices are still prevalent for us.  No corn syrup, fructose et cetera as I have really learned how damaging that can be in my own personal research.

This is going great!
Title: Re: Harvoni Side effects
Post by: Mugwump on February 26, 2015, 07:33:14 pm
Hi everyone! Katie all I know is my viral count is 7 million the other info you guys talk about I will have to ask my doctor about I'm surprised it's not in my on line Beaumont chart? I have low energy you guys!? And my joint problems are back!? Lower back sacral area the worst? Anyone else is this normal and it the other info that I don't have important?  Oh and please all of you finishing Don't Krave Us! We need to hear about life after Harvoni!!! ;)

It is a common problem with HCV infection! Your immune system can be adversely effected by the disease.  Long term infection that causes slow liver damage is well known to cause secondary auto-immune responses. These responses can include the early onset of immune caused arthritis in those who are prone, hyper-thyroid (by your immune system attacking the thyroid gland itself in my case). Some individuals do not experience auto-immune diseases others are more prone.

Here is hoping that freeing the liver from HCV will normalize immune responses as they have caused me trouble.

I can tell you that after 12 weeks of Harvoni treatment the swelling, lack of flexibility and pain in my phalanges of my hands has backed off and the joint pain that stopped me from performing music is relieved to the extent that I will be performing in public again very soon.

Best wishes from a fellow fighter. Kick the disease and do not be afraid of it you can do it!

Eric 
Title: Re: Harvoni Side effects
Post by: TTSP on February 26, 2015, 07:57:13 pm
@Keanu2015 Thank you. :)
Title: Re: Harvoni Side effects
Post by: apache on February 26, 2015, 08:09:35 pm
Quote
Long term infection that causes slow liver damage is well known to cause secondary auto-immune responses. These responses can include the early onset of immune caused arthritis in those who are prone, hyper-thyroid (by your immune system attacking the thyroid gland itself in my case). Some individuals do not experience auto-immune diseases others are more prone.


Based on the anecdotal stories from this and other threads, I've mentioned to a few folks that people being treated with Harvoni have experienced a reduction in arthritis-like pains.   I've been met with polite, but skeptical responses.   I'd love to point them at a research paper which supports this phenomenon.    Do you know of any?   

Thanks in advance.
Title: Re: Harvoni Side effects
Post by: SunIsOut on February 26, 2015, 08:57:36 pm
On the subject of inflammatory symptoms I too was getting arthritis in my hands and it was very painful in my knuckles.  Also when I climbed steps I would get a sharp pain in my knee.  The worst of it every time I played golf I would get golfers elbow.

I started taking Serrapeptase about 9 months ago.  This enzyme has done wonders for me.  I started taking it for the inflammatory pain that I would be able to tell if if made a difference and some other benefits that I would not be able to measure.

I could monitor;

-Joint and Knee pain

I cannot monitor but am hopeful that it is also aiding;

- scar tissue, arteries.

I told my hematologist doctors that I would give up the herbs but I had to keep the serrapeptase as I can tell what it does for me and the L-Theanine (amino acid from green tea).

As always do your own research and I have tried and passed on many things like Colloidal Silver and other homeopathic s but these two are staying with me.

A couple of articles here. I use Dr.s Best from Amazon.

http://www.globalhealingcenter.com/natural-health/health-benefits-of-serrapeptase/ (http://www.globalhealingcenter.com/natural-health/health-benefits-of-serrapeptase/)

http://serrapeptase.info/ (http://serrapeptase.info/)

It does not work overnight but you will notice after a few weeks an improvement and for me no pain at all today.  I did my 3 day golf outing this past October and it was the first time I could finish the event without severe pain in my tendon.

Good luck.
Title: Re: Harvoni Side effects
Post by: Katie on February 26, 2015, 10:58:01 pm
Thanks Sun Is Out!  I registered on the site and will check it out.

Took my 84th pill last night and am going in for my blood test tomorrow.  I got my painting finished today, but have more work to do before I am done.  Will soon have my house in order and then will be out in the garden. (If our spring weather holds) 

I hate to rub it in, but my daffodils have buds on them and all of my perennials are up, my berry bushes have buds as does my lilacs.  We will be in big trouble if we get a hard freeze, so now I am hoping the mild temps remain constant.  So strange for February in Alaska!

Welcome to all the newbies and thanks for the comments today.  Feel well, be well and keep moving forward, my fellow warriors!

Katie
Title: Re: Harvoni Side effects
Post by: Mugwump on February 27, 2015, 01:09:31 am


Based on the anecdotal stories from this and other threads, I've mentioned to a few folks that people being treated with Harvoni have experienced a reduction in arthritis-like pains.   I've been met with polite, but skeptical responses.   I'd love to point them at a research paper which supports this phenomenon.    Do you know of any?   

Thanks in advance.
http://www.ncbi.nlm.nih.gov/pubmed/8745593?dopt=Abstract
This would strongly indicate that eradication of the virus will in some individuals normalize anti-LKM1 antibodies and at least slow down the resulting inflammatory reactions in the tissues that are effected by auto immune reactions.

Because Harvoni treatment is so new I do not think that studies regarding relief from the known auto immune effects of HCV have yet to be undertaken.

Hopefully this will turn out to be what happens and individuals who are prone to auto immune disorders will find some relief once cleared of the virus.   

I was looking for a study done on Vietnam vets in Australia. It originally put me on to the autoimmune problems I experienced with my thyroid. I discussed this possibility over 10 years ago with my GI who is also a top infectious disease specialist. He agreed that indeed auto immune problems that many experience with HCV might be relieved by ridding the individual of the virus.

I was originally diagnosed in 1988 with autoimmune Graves but it was non specific so I did quite a bit of research in the mid 90's about this and found papers from Australia. Here in the US most point to autoimmune arthritis and some rare cases of dangerous autoimmune hepatitis. http://www.ncbi.nlm.nih.gov/pubmed/9062950 Unfortunately many who suffer from secondary effects from HCV are misdiagnosed and many individuals are only diagnosed after liver damage is already underway.

Now that there is good treatment for the disease hopefully testing will become less stigmatized and the disease will be eradicated from history.

The doctor from Australia had a high concentration of cases directly related to blood transfusions and drug use during the Vietnam war which led to some speculation that the virus only became prevalent during that era, specifically genotype 1a became prevalent during that time period. He also had several individuals with non specific elevated thyroid hormone levels like I had until I had my thyroid treated with radiation and went on replacement hormones.

Fortunately autoimmune problems seem to be a problem only in a minority of cases >20% but the statistics seem worth more study as more people are freed from HCV genotype one a.

I know that having a robust immune system has saved my life but perhaps this is part of problem. Having an immune system that will fight genotype 1a over a long period of time might have brought on early arthritis and Graves disease in my late 30s. Graves disease is an immune disorder normally associated with individuals over 50 years of age and is more prevalent in women than men.

Perhaps some individuals who have had auto immune disorders should be monitored for changes in their immune systems post treatment, who knows perhaps little changes to how the immune system works can shed some light on how to effectively treat difficult diseases like arthritis even in individuals who do not have HCV messing with their immunity.

Eric
Title: Re: Harvoni Side effects
Post by: Karen1124 on February 27, 2015, 10:21:43 am
Hello Sun is out,
I was taking serrapeptase prior to Harvoni and it is amazing in my opinion! Also doing castor oil packs 3 or 4 days a week! My doctor said during treatment I should take just my multivitamin! I really miss them both!! Are you taking serrapeptase during treatment?from everything I've read on this forum all of our doctors are very different my doc is very bossy. lol!! at first I didn't like in but everything you've told me to do has worked......Karen
Title: Re: Harvoni Side effects
Post by: apache on February 27, 2015, 10:47:33 am
Hi Mugwump,

Thanks for the PubMed pointers and other info!
In particular, the first PubMed paper you referred to was quite interesting:
Quote
http://www.ncbi.nlm.nih.gov/pubmed/8745593?dopt=Abstract
Pathol Biol (Paris). 1995 Oct;43(8):709-15.
[Extrahepatic manifestations related to hepatitis C virus].
[Article in French]
Opolon P1, Lunel F.
Author information
Abstract

The hepatitis C virus infects mononuclear cells and, like other viruses, can be responsible for immune disorders. The immune abnormalities described in the course of hepatitis C consist of nonspecific immunological disorders (cryoglobulinaemia, autoimmune disorders, generally associated with the presence of organ-specific or nonspecific autoantibodies). The association between mixed cryoglobulinaemia and hepatitis C has been clearly established, as 50% of patients with essential cryoglobulinaemia suffer from hepatitis C and 50% of patients with hepatitis C suffer from cryoglobulinaemia.

And looking up cryoglobulinanemia yields the connection to arthritis:
Quote
http://www.nlm.nih.gov/medlineplus/ency/article/000540.htm

Cryoglobulinemia is the presence of abnormal proteins in the blood. These proteins thicken in cold temperatures.
Causes

Cryoglobulins are antibodies. It is not yet known why they become solid or gel-like at low temperatures. When this occurs, these antibodies can block blood vessels. This may lead to problems ranging from skin rashes to kidney failure.

Cryoglobulinemia is part of a group of diseases that cause damage and inflammation of the blood vessels throughout the body (vasculitis). There are three main types of the disorder. They are grouped based on the type of antibody that is produced:

    Cryoglobulinemia type I
    Cryoglobulinemia type II
    Cryoglobulinemia type III

Types II and III are also referred to as mixed cryoglobulinemia.

Type I cryoglobulinemia is most often related to cancer of the blood or immune systems.

Types II and III are most often found in people who have a chronic (long-lasting) inflammatory condition, such as an autoimmune disease or hepatitis C. Most people with mixed cryoglobulinemia have a chronic hepatitis C infection.

Other conditions that may be related to cryoglobulinemia include:

    Leukemia
    Multiple myeloma
    Mycoplasma pneumonia
    Primary macroglobulinemia
    Rheumatoid arthritis
    Systemic lupus erythematosus

Symptoms

Symptoms will vary depending on the type of disorder you have and the organs that are involved. Symptoms may include:

    Breathing problems
    Fatigue
    Glomerulonephritis
    Joint pain
    Muscle pain
    Purpura
    Raynaud's phenomenon
    Skin death
    Skin ulcers

Exams and Tests

The doctor will do a physical exam.You will be checked for signs of liver and spleen swelling.

Tests for cryoglobulinemia include:

    Complete blood count (CBC)
    Complement assay -- numbers will be low
    Cryoglobulin test -- may show presence of cryoglobulins
    Liver function tests -- may be high
    Rheumatoid factor -- positive in types II and III
    Skin biopsy
    Urinalysis -- may show blood in the urine if the kidneys are affected

Other tests may include:

    Angiogram
    Chest x-ray
    ESR
    Hepatitis C test
    Nerve conduction tests, if the person has weakness in the arms or legs
    Protein electrophoresis - blood

Treatment

Mild or moderate forms of cryoglobulinemia can often be treated by taking steps to deal with the underlying cause. 

    Mild cases can be treated by avoiding cold temperatures.
    Standard hepatitis C treatments usually work for patients who have hepetitis C and mild or moderate disease. The condition can return when treatment stops.

Severe cryoglobulinemia involves vital organs or large areas of skin. It is treated with corticosteroids and other medicines that calm the immune system.

Treatment may also involve plasmapheresis. In this procedure, blood plasma is taken out of blood circulation. It is replaced by fluid, protein, or donated plasma.


So it looks like there is a good scientific argument... for supporting the anecdotal evidence we've seen, re: curing Hep C (via Harvoni or other methods) could very well have a favorable outcome with arthritis symptoms as well.   Nice!   Killing two birds with one stone  :)
Title: Re: Harvoni Side effects
Post by: CHepCFree on February 27, 2015, 10:57:17 am
Four more days to go on the 12 week program.   I'm non-detectable and hope for SVR in another 12.  Have experienced constipation for a good portion of the treatment but am happy to say that last 4 weeks have been good.   I also have had ringing in the ears (tinnitus) since the first week.   I've been checked by an ENT and there is no damage so I'm hoping once I finish treatment, the ringing will subside.  Just a reminder, as a courtesy to our fellow heppers, to report your side effects to Gilead and/or the FDA. I have not seen any updates from them on this drug and I would think with so many people now on the drug and many are weeks into the treatment and even have finished that we would see updated information.   Has anybody seen any updates?  I did hear from my naturopath to not eat grapefruit during treatment since grapefruit changes how your liver processes food and meds.   Just an FYI.
Best to All!
Cathy
Title: Re: Harvoni Side effects
Post by: Karen1124 on February 27, 2015, 11:37:44 am
Hi chepcfree,
Thanks for the info on grapefruit that is one of my low sugar fruits!
I'll stick with my blueberry and strawberries! Good luck to you! God bless us all!......Karen
Title: Re: Harvoni Side effects
Post by: SunIsOut on February 27, 2015, 12:41:31 pm
Hello Sun is out,
I was taking serrapeptase prior to Harvoni and it is amazing in my opinion! Also doing castor oil packs 3 or 4 days a week! My doctor said during treatment I should take just my multivitamin! I really miss them both!! Are you taking serrapeptase during treatment?from everything I've read on this forum all of our doctors are very different my doc is very bossy. lol!! at first I didn't like in but everything you've told me to do has worked......Karen

Hi Karen,
Yes, I am still taking Serrapeptase as it is an enzyme and L-theanine as it is an amino-acid and my doctors were okay with those plus the Vitamin B/D supplements.  All herbs were put on hold.  I use the 120,000 units for doctors Best  and purchase from Amazon.  This was a game changer for me. I am glad to hear from someone else that has had success too.

Title: Re: Harvoni Side effects
Post by: Katie on February 27, 2015, 01:01:10 pm
Grapefruit may cause a problem with elimination of certain drugs, especially heart medications.  This could cause the drug level to build up in your system and cause problems.  Anyone taking blood thinners etc should avoid grapefruit.  I don't believe Harvoni has an issue with it and hope not as I have been eating lots of them for breakfast throughout my treatment.

I found this site that has a drug checker on it where you can type in a medication and it will show what it interacts with.  You click on the drug interaction checker in the first sentence.  Harvoni is included and the list is extensive, mostly antacid and some antibiotics and many I am not familiar with.  If you take any medication I would definitely check this resource out.

http://www.drugs.com/article/grapefruit-drug-interactions.html

Katie
Title: Re: Harvoni Side effects
Post by: Islandgirl on February 27, 2015, 01:55:08 pm
Congrats on your last 4 days and being UND!  I took my last pill on the 25th and hope we're all still UND and then SVR12!  Remember your water!  I slacked off and paid for it last night with extreme leg cramps so it was a bit of reminder that the Harvoni is still working in my body...

Sun is Out, I'm ordering some of the Serrapeptase today!  Thanks to everyone for all the great info you've posted here!  ....Islandgirl
Title: Re: Harvoni Side effects
Post by: Amj1951 on February 27, 2015, 04:08:09 pm
Hello everyone!!!

I realized I have not posted in a while. I am rather disgusted today. We are supposed to be fly fishing but of course Dallas and the surrounding area has got snow and ice coming later and in the morning .. so they say.. but the tournament was canceled for this week. I love seeing a good snow fall once a winter.. but now I am ready for the spring! I noticed some of my daffodils and tulips are starting to pop up.

I am so thrilled for everyone that is finishing up their treatments!!! I go for my 8 week blood work Monday but I don't think they will do a VL which is fine. I still feel perfectly normal. I have noticed my BP has been slightly elevated but I guess its fine as long as it goes back down once I am done with the Harvoni. I am sleeping great now but I still wired with energy during the day. No complaints!!

It is kind of weird looking at the last bottle (12 weeks for me.) knowing that's it. I wonder sometimes is it enough, but I don't let myself go there. Just think positive because in the end...... it is what it is and we'll deal with it.. but fingers crossed its truly gone for all of us : )

Now, I need to go read some more and catch up on how everyone is doing.
I hope you are all having a wonderful Friday!!

Meredith


Title: Re: Harvoni Side effects
Post by: kate0b1 on February 27, 2015, 05:43:04 pm
@katie and Meredith, no bragging about flowers, it's poor form lol, I'm so ready for spring :).  Does anyone have any good ideas/tips about indigestion? The last two days I've been crazy with it, I can't even remember the last time I really had it, but I'm not crazy about it!  Kate
Title: Re: Harvoni Side effects
Post by: Alfredo on February 27, 2015, 06:22:14 pm
Hello to all, today is one week for me and dealing with lots of energy and not sleeping well. I will adjust my med and see how that works out. I am trying to avoid any fatigue during working hrs. Has anyone here have lots of energy at the start then crashed? 
Title: Re: Harvoni Side effects
Post by: Mugwump on February 27, 2015, 07:06:06 pm
Hello to all, today is one week for me and dealing with lots of energy and not sleeping well. I will adjust my med and see how that works out. I am trying to avoid any fatigue during working hrs. Has anyone here have lots of energy at the start then crashed?
It is common. This seems to depend greatly upon the level of liver damage at beginning of treatment. Those who have no cirrhosis do not seem to be as heavily effected by treatment. I crashed at about 6 weeks of treatment and but I have stage 4 cirrhosis and expected that my level of liver function would make me more prone to fatigue until as my liver healed. Close to the end of week ten my level of energy returned to a more normal level.

It is really important to eat normally and try to eat less quantities things that are harder on your digestion.

I also suspect that what can happen because you will be needing more fluids to deal with the increase in renal functions associated with treatment that could cause a slight electrolyte imbalance in some people. This could explain the muscle aches and headaches some experience during treatment.

For me if I did not drink enough fluids during the first phase of the treatment then I very quickly became dehydrated especially at night. During the first two to three weeks I was up going to the bathroom every two hours, so yes it is easy to have trouble sleeping on this med!

no bragging about flowers, it's poor form lol, I'm so ready for spring :).  Does anyone have any good ideas/tips about indigestion? The last two days I've been crazy with it, I can't even remember the last time I really had it, but I'm not crazy about it!  Kate


SOUPS preferably that don't contain too much salts and sugars, try cutting back on cheeses and heavy meats. If you do have sandwiches with meats then try pate instead of coarse sliced meats. Canned salmon is good so is egg salad.
If you like it then good old pea soup is fantastic, make sure to cut down on raw onion and use veggies like spinach in sandwiches and even as a base on the plate for main dishes. Pate can easily be created from roast beef and helps your stomach to deal with breaking down the proteins.

As far as bragging rights go we have the Japanese Cherry trees in bloom early this year and I already had to tune up the lawn mower, sharpen it because my wife cuts the grass way too low and hits rocks all the time LOL But I have to do this usually in late March not in February. On the east coast of the Island there are fry coming out of the gravel one month early and there is ocean beach fishing for searun Cutthroat trout starting up so before I go back to work next month I will be casting minnow imitations at the creek and river mouths this year. I really wanted to shovel snow but I guess I am not as lucky as some are in the States. No igloo building this year DRAT!
Title: Re: Harvoni Side effects
Post by: Moregrits on February 27, 2015, 07:15:32 pm
I am 3 weeks into Harvoni, and yes, the first few days I was like the Energizer bunny. I can't say I crashed, but just wore myself out. I have read many side effect complaints that sound like the same list of troubles to all my friends in the 60 year old group, give or take a couple of years. Joint pain, sinus congestion, insomnia, fatigue and headache come and go for many without hep C and treatment. Glad to say that I am not having problems I correlate with Harvoni. Good luck!
Title: Re: Harvoni Side effects
Post by: Katie on February 27, 2015, 07:41:56 pm
Hey Moregrits,  I refuse to believe that as you get older you should expect to feel that way if you take care of yourself.  I had all of those listed complaints because of Hep C.  Serious fatigue and haven't slept well in a decade where I would sleep maybe 2 or 3 nights a week because I was so exhausted, and woke up feeling horrible.  With Harvoni, ALL of these disappeared for me...other than my joint and back issues, which are due to injuries.  I also had mental confusion and poor skin quality which are both corrected now.  I am very fortunate to be able to say I am very healthy other than Hep C, so I am looking froward to a healthy energetic retirement and I am pushing 68.  (I have no idea how that happened!)   ::) 

I finished up my 12 weeks Wednesday evening and went in for my blood test today.  I'll be holding my breath hoping I have cleared this alien monster and then the 12 week wait will begin.  That will be rough on me so I'll be out in my garden.   :)

Hope all of you have a minimum side effects, get as much exercise as possible and drink your water.  We are all so fortunate to have this breakthrough on this treatment and I am counting my blessings!  Thanks for being here giving support to each other.  It means a lot!

Katie
Title: Re: Harvoni Side effects
Post by: readynow on February 27, 2015, 07:56:03 pm
Hi: Yeah, it feels odd not having a pill to take at the same time every day.  That feeling of insecurity started to fade away after a few days for me.
Title: Re: Harvoni Side effects
Post by: Katie on February 27, 2015, 08:09:54 pm
Readynow...Thanks for saying that.  It's nice to know you aren't alone. HA!  I am nervous about the virus coming back but also, I don't want to go back feeling so miserable since I have had 83 days of deep sleep and ridding of all the horrible effects Hep C gave me.  I have to admit, I had week 9 & 10 where the fatigue returned, in spite of sleeping and I was all gloom and doom. Then I woke up one morning and felt great again. I've never been depressed but that was probably what it feels like.  I was really worried the virus had returned with force but I think you have cycles of symptoms as your liver starts filtering out the toxins.  I had other things come and go too, but they were very minor things.

I have saved the 3 Harvoni bottles and have decided to make a mobile out of them to hang in reminder of how fortunate I am to have the opportunity to have this drug.  I need to think of some other items to add to it, so if any of you have any ideas, please share!  Since each container represents over $30,000, I just couldn't throw them out.  Ha!  Thought you all would get a kick out of that.

Katie
Title: Re: Harvoni Side effects
Post by: MEG on February 27, 2015, 08:55:11 pm
Thanks so much everyone for sharing so much here today.

Katie--I'm so happy for you. We will be here to keep you company. How wonderful that you made a mobile. I kept my second bottle and I'm no inspired to think of something to make with them.  A charm bracelet? ;-)

Sun---thanks for the heads up on serrapeptase. I don't have arthritis but my poor doggie of 10 years has severe hip dysplasia and arthritis. He's otherwise so healthy. I try different things every several months to try to make him as comfortable as possible. He's been through soooooo much with me.

Wishing everyone a peaceful evening with Harvoni on the prowl for the ever sneaky hcv. I think the latter has found its match!
Title: Re: Harvoni Side effects
Post by: Islandgirl on February 27, 2015, 09:02:56 pm
Hey Katie.... I couldn't throw my bottles away either, can't say exactly why, but here they sit - a symbol of so many things.  Hope, fear, joy and excitement, panic and anxiety.  But mostly hope.

I don't get my next labs until 3/25 (see my doc on 4/2 for  results - then next labs on 9/25, hoping to be SVR12.  Feeling a bit depressed for some one reason, probably just the "not really knowing".  I'm still having some sides, but drinking my water and hoping I'll find myself feeling better and better as time passes.  Maybe I'll perk up and think of some things to suggest for that mobile you mentioned :)  Wishing us all the best, hugs  ....Islandgirl
Title: Re: Harvoni Side effects
Post by: Ruthie on February 27, 2015, 09:42:59 pm
I haven't been on in a while, so need to update.

The sores in my throat and tongue are much better. A friend is an acupuncturist. She told me some acupressure points to use to alleviate all my side effects.

I feel that my mood has been changing a lot lately. I talked to my pharmacy and it's a known side effect of the Sovaldi. I'm bipolar, so I'm predisposed to mood problems. It does piss me off that Gilead didn't disclose it as a known side effect of Harvoni.

I have Flu b now. Obviously, the flu shot didn't work on the b strain either. I'm on tamiflu. I cleared it with the pharmacy first. If anyone else needs to take tamiflu, we can on Harvoni.

I saw my psychiatrist today. She was amazed-she was grinning ear-to-ear that my skin tone is better than she's ever seen it! I'm believing that means the Harvoni is killing off them suckers!! Woo-Hoo!!!! She's also happy I have this forum
Title: Re: Harvoni Side effects
Post by: Katie on February 27, 2015, 10:01:43 pm
That's WONDERFUL news Ruthie.  I was wondering how you were doing.

Glad you have some good knowledgeable support with your health care.  My skin has improved so much too.  I still have my wrinkles (darn) but the texture is SO much better.  Better than in the past 15 years.  I don't look sick anymore and it helps when you look in the mirror.  Hope you kick the flu bug.  That is miserable and maybe it had something to do with your mouth.  Could be your immune system was stressed to begin with so things took hold.  Feel better!!!!

One thing I just noticed today; I have gotten much more grey in the past couple months.  I am fortunate as I am 68 and still have dark hair with some grey temples, (thanks to my paternal grandmother) but it has definitely spread.  I am sure it is just a coincidence that this occurred during treatment.  I don't mind as I finally have a change in color and who knows, maybe I'll put some lavender streaks in it in the future!  Ha!

Island Girl:  Yes I am anxious too without my Harvoni security blanket.  I thought I would be glad to finish up the pills but it is a bit frightening.  I am feeling good but still get tired out late afternoon and I am sure the meds are still in my system.  We'll see what next week brings and of course I will get my results then too. (mail biting time) 

Next Wed I have an appointment with a PT who does the cranial/sacrum adjustment and she looks at the whole person.  I have heard nothing but good things about her and my insurance will cover it!!!!  I am hoping it will help all of my joints and neuropathy in my legs and arms, as I am really hurting from all the painting and woodworking on my remodel.  Too much ladder work but it had to be done.(and I still have more to do).

Hey Nicole...how are you doing?  Miss you!

Katie
Title: Re: Harvoni Side effects
Post by: Ruthie on February 27, 2015, 10:19:47 pm
Katie, you should TOTALLY put lavender streaks in your hair!
Title: Re: Harvoni Side effects
Post by: kate0b1 on February 28, 2015, 07:11:22 am
@eric, since there is nothing blooming here we are still in soup mode lol, i do eat a lot of cheese though. maybe i could cut that back along with my coffee intake for another two weeks. i don't know where this came from but its rather annoying.
@meg and katie, i feel a little bad that i threw out my bottles, my charm braclet won't really work with just the last one. maybe ill look on pintrest to see what can be done with just one bottle lol. and i don't even care what color my hair is at this point i am just sooooo happy to have it still on my head lol.

kate
Title: Re: Harvoni Side effects
Post by: joe49 on February 28, 2015, 11:35:41 am
I just completed my first month on Harvoni still have 5 months to go.   After one month all my lab tests show significant improvement.  My ALT and AST are normal for the first time in 20 years.  However, my viral load came back as a "weak positive" and my doctor told me this is great news as the medication is working.  After getting this result and not an exact number, I did some research.  As I already expected, the "weak positive" is a qualifiable result - as opposed to a quantifiable result - and, in fact, could be a false positive.

I'd like to know if anyone else has been told they are "weak positive" and can shed some light on this result.  Thanks

PS  -  My viral load prior to treatment was 1,900,000. 
Title: Re: Harvoni Side effects
Post by: Karen1124 on February 28, 2015, 11:52:59 am
Hey joe49,
Congrats on those numbers you are on your way to be cured!I go for my blood work on the 5th and my doctors appointment on the 11th of March and I just received my last bottle As I am on at 8 week treatment. I know that it is done something cuz I do feel better!......Karen Life is Good!!
Title: Re: Harvoni Side effects
Post by: Bob V on February 28, 2015, 01:33:13 pm
I haven't been on here in a couple of weeks. First I'd like to say hi to all the new posters, you'll get some great support and info here. For me the treatment has had it's ups and downs but Harvoni is the best shot at a cure....so you gotta go with it.

Tomorrow will be dose 84 my last :) good luck everyone.
Title: Re: Harvoni Side effects
Post by: Amj1951 on February 28, 2015, 05:26:25 pm
Readynow...Thanks for saying that.  It's nice to know you aren't alone. HA!  I am nervous about the virus coming back but also, I don't want to go back feeling so miserable since I have had 83 days of deep sleep and ridding of all the horrible effects Hep C gave me.  I have to admit, I had week 9 & 10 where the fatigue returned, in spite of sleeping and I was all gloom and doom. Then I woke up one morning and felt great again. I've never been depressed but that was probably what it feels like.  I was really worried the virus had returned with force but I think you have cycles of symptoms as your liver starts filtering out the toxins.  I had other things come and go too, but they were very minor things.

I have saved the 3 Harvoni bottles and have decided to make a mobile out of them to hang in reminder of how fortunate I am to have the opportunity to have this drug.  I need to think of some other items to add to it, so if any of you have any ideas, please share!  Since each container represents over $30,000, I just couldn't throw them out.  Ha!  Thought you all would get a kick out of that.

Katie

Katie.. I am the same. I cant throw the bottles out. I love your idea of a mobile. I was thinking of wrapping color paper around them and using for tiny vases.

ERIC... Japanese Cherry trees. I bet those are beautiful!! We have some oaks, but that's about it... though they are lovely in their own way.... but they aren't cherry trees  :)

Kate... Did you figure out the heartburn? Don't pregnant ladies get that? he he : ) Just kidding! Can you imagine having triplets at this point in your life!?!  Shoot me dead!!

Being locked in from the snow/ice is making me nuts today.. though its rather entertaining watching my dog act crazy as she runs around in it. Earlier the ice was cracking as she walked and she would freeze and look down (Not the brightest apple on the tree but she's mine!! : )

I hope everyone is warm.
Meredith

Title: Re: Harvoni Side effects
Post by: Katie on February 28, 2015, 05:39:56 pm
Hey Meredith,  I love your idea about vases, but I decided I want the bottle in all it's ugly glory in plain sight.   ;D

I know you were teasing about pregnancy but just as a reminder to the younger crowds. I posted this earlier, but in case you missed it.

Glad to have you back Bob V.  I was wondering about you.  Good luck with your EOT!  Exciting and nerve wracking at the same time.  Nail biting time for me but I am feeling good.  A slight dull ache every once in awhile on my right side, but the good news is, I am still sleeping well.  YAY!

Katie
+++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++
What is the most important information I should know about SOVALDI?
SOVALDI combination therapy with ribavirin or peginterferon alfa and ribavirin can cause birth defects or death of your unborn baby. If you or your sexual partner is pregnant or plans to become pregnant, do not take these medicines.

•   You and your sexual partner must use 2 effective forms of birth control and should not become pregnant while being treated with SOVALDI combination therapy and for 6 months after your treatment is over. Talk to your doctor about forms of birth control.
•   If you or your partner can become pregnant you must have a pregnancy test before starting treatment with SOVALDI combination therapy, every month while being treated, and for 6 months after your treatment ends.
•   Tell your healthcare provider right away if a pregnancy occurs while taking or within 6 months after you stop taking SOVALDI combination therapy. You or your healthcare provider should contact the Ribavirin Pregnancy Registry. If you are also infected with HIV and taking medicines to treat your HIV infection, an Antiretroviral Pregnancy Registry is also available. For contact information, please see full Prescribing Information.
Title: Re: Harvoni Side effects
Post by: Katie on February 28, 2015, 05:43:22 pm
FYI: I just watched the VICE Special report on cancer research on HBO and it is AMAZING. It will be on all this week at various times. Please watch it. They are saying this treatment (cure) could actually be available by 2016 and they've had remarkable success on human trial patients as we speak. I am SO excited! I LOVE Science and scientific research!  Just wanted to let you know!

Amazing medical research is happening right now.  There is also a study which looks very promising on MS...another horrible disease.

I just wanted to share this information in case you have someone dear that is suffering from cancer.  I LOVE SCIENCE!

Stay well...

Katie
Title: Re: Harvoni Side effects
Post by: Bob V on February 28, 2015, 09:48:28 pm
Thanks Katie.
My brother had some issues with his treatment, depression/anxiety, ended up in the hospital. Going into his last 2 weeks of treatment his VL was still 17. His doctors, he has several, were trying to get him another 12 weeks but insurance denied it. He's still waiting on his EOT labs results. Anyway this had me side tracked the last few weeks.

I hear you on the anxiety. I'll admit it finally started getting to me this week but "it is what it is" nothing we can do about it now :)
Title: Re: Harvoni Side effects
Post by: Amj1951 on March 01, 2015, 11:10:09 am
Hi Katie.. and everyone : ) Yes, I was just teasing Kate, but I probably shouldn't have said it. I am sure this would NOT be the time to get pregnant.. though at my age I'd shoot myself : ) ha!

On the Harvoni bottles you'd think for what they cost they would have done better than a cheap plastic bottle. I was rather surprised the first time I saw it. Not sure what I was expecting, but that wasn't it. 

BOB V - Congratulations on your last dose!! I hope you keep everyone posted as you go through the follow ups, etc.

It sounds like everyone is doing well and I am so glad.

I have felt some odd twinges on my right side today. I am wondering if its the rich alfredo sauce I made and ate for 2 days. I feel like my arteries have even hardened at bit just looking at it. It was good!! I think today will be some healthy veggies.

I have a new appreciation for everyone up north dealing with the snow. My yard looks like a big slushy mess!! Just warm enough to start melting it but not warm enough to get rid of it. I am over it and ready for spring and some sun shine!!

Meredith
Title: Re: Harvoni Side effects
Post by: concerned father on March 01, 2015, 08:09:46 pm
My daughter will be starting her treatment in a few months.  When should she think about re-infection from her tooth brush or razor? 
Title: Re: Harvoni Side effects
Post by: MEG on March 01, 2015, 11:20:17 pm
Katie, Thanks for the heads up on the HBO cancer program. I'm also happy to hear that you are still sleeping well.

LOL, ladies re: getting pregnant! Hahaha....immaculate conception for me. ;-)

I'm on day 3 of antibiotics and I'm feeling so much better. I as able to take a nice long walk with my dog and have a meaningful conversation with a dear long distance friend.  I was essentially bed bound except for necessary errands and doctor appointments. 

I think sometimes we(I'm talking about myself here) lean too extreme re: antibiotics. I waited for 4 months for this "cold" to go away, eschewing antibiotics. Suffering through profound fatigue, flu symptoms, sinus pain, etc., etc.  But they are helping immensely this w/e. My spirit is also feeling so much better.

It never fails to amaze when I experience how the body and mind impact each other.

Here's to a restful nite for all. Thanks so much for being here and sharing so much of yourselves...
Title: Re: Harvoni Side effects
Post by: Katie on March 02, 2015, 12:04:30 am
Meg, so glad to hear you are doing better.  Take care, rest and be well.

Katie
Title: Re: Harvoni Side effects
Post by: Bob V on March 02, 2015, 12:30:41 am
Meg
 Glad you're feeling better. I went on a seven days of amoxicillin week two on Harvoni for a tooth infection.
Title: Re: Harvoni Side effects
Post by: Mugwump on March 02, 2015, 12:57:19 am
My daughter will be starting her treatment in a few months.  When should she think about re-infection from her tooth brush or razor?

Buy new gear and start using it as soon as the first VL results are in. The actual chances of re-infect can be greatly reduced if not eliminated on tooth brushes with mild hydrogen peroxide solution until she is undetected. Make sure that it is done in cold water fresh hp 3% for several minutes. Keep the solution sealed and out of sunlight until it is used and the solution is only good for a short time when exposed to the atmosphere. I have used food production sanitation solutions for years. People tend to overdo it with chlorine bleach and it can be dangerous if used with other chemicals in the wrong way to say the least.

Most pharmacies sell pure hydrogen peroxide in 10% solution so if you mix it 3 to 1 you have a good way of sanitizing tooth brushes between uses. Leave the solution wet on surfaces and let it dry without wiping.  Obviously avoid things like over priced and over-hyped Oxyclean that will contain other chemicals that you definitely do not want on a tooth brush!

HCV viral encapsulation is broken down by exposure to too much free oxygen, that is why sharing towels is not recommended. But if the virus is exposed to the air in a dry environment it will lose encapsulation which is necessary for the virus to enter the liver.  But exposure to active hydrogen peroxide breaks down the HCV membrane faster than waiting for the air to dry it enough for the membrane to break.

All that said the chances of accidental re-infection are very slight, so these are purely precautions and one can easily go overboard worrying about infecting others or re-infecting themselves.

Best Wishes
Eric
Title: Re: Harvoni Side effects
Post by: Keanu2015 on March 02, 2015, 01:16:18 pm
Hi everyone!

   Day 11 for me. I've been feeling better and better. Katie and Bob V- Congrats on your final doses! That's awesome! It sounds and feels to me like this is in fact truly a miracle drug! Meg I'm glad to hear that perhaps you can finally get rid of your "cold"! great news. Concerned father and mugwump, thanks for bringing this thought into focus. I never even realized that I could re-infect myself! I have always been careful hiding my razors and toothbrush from my kids or anyone else that may attempt their use but that just threw a hole new shocker into it! I would imagine that while we are on medicine it can be considered no more than simply part of the VL. However is it the strongest member of their army that snuck out, looking to sneak back in? Good thought. Time to change over to new stuff! Amj1951- For dinner yesterday I made us a killer batch of Barilla whole-grain spaghetti, with Amy's 92/8 hamburger and "Newmans Own" Sockerooni sauce! I had some bad heart burn last night but my liver didn't give me any pain like it did last time I made that 2 weeks ago. That right there tells me the Harvoni has already started changing the game for me in 10 days! Btw I know red meat is a no-no and so those times there are few and far between now. I'm a little tired but otherwise very well :) Hope everyone is feeling great today! ttys!
Title: Re: Harvoni Side effects
Post by: BG42 on March 02, 2015, 01:49:30 pm
Hi everyone!

I have been following and reading everyone's posts, (aka "lurking") but it's been a while since I've checked in.

I'm on Day 1 of Harvoni today. Technically I guess it is day 2, but I take my does at night at 9:00 pm so I only have had one dose.

Holy brain fog batman! I feel slow and tired! Nausea comes and goes but food and lots of water has helped!

I am hoping the fatigue goes away with time, but I am willing to put up with that for 8 weeks! Has it gotten better for some of you??

BG

Title: Re: Harvoni Side effects
Post by: chino1969 on March 02, 2015, 02:05:00 pm
I am new to the forum and started taking Harvoni on October 17th.  Is anyone else taking it and experiencing any side effects?  I am getting daily headaches and fatigue when I first take the pill in the evening.  The fatigue seems to be letting up during the day.  I was experiencing nausea for the first few days but that seems to be better now.

I have 1b and my liver is f3 with a viral load of 4.7 million.  AST 75, ALT 93

Thanks, Art


Art,
I started Harvoni on 2/23 and take it in the morning with breakfast.  Minimal side effects week one, even less going on week 2.  I drink about a gallon of water daily.
Title: Re: Harvoni Side effects
Post by: concerned father on March 02, 2015, 02:06:52 pm
Thank you Eric.
Title: Re: Harvoni Side effects
Post by: Keanu2015 on March 02, 2015, 02:15:21 pm
BG 42,

     I'm just ahead of you. I'm in day 11. I had some diziness, slight headaches and sleepiness in the beginning of treatment. Day 4 I was feeling kinda sick. Since then I'm having some heart burn at times and I feel like I have some extra mucous on my lung walls but am not sick. It's hard to explain. Ultimately though I feel much better today than I did before I started. The pain in my liver (upper Right side) is almost non existent now. I get a little jolt here and there but it's very mild. Best of luck to you! Keep us posted.
Title: Re: Harvoni Side effects
Post by: MEG on March 02, 2015, 02:23:52 pm
Thanks so much @Katie, @Bob, ya it took a couple of days after I saw my pcp because she wanted to assure with my hepatologist that doxycycline or amoxacillin were compatible with the Harvoni. 

Interestingly, I felt so much better by last nite that I could not fall asleep until after 3am. I'm now experiencing what others here have re: insomnia/Harvoni.  Tonight it's hydroxyzine(antihistamine/antianxiety med) if I'm still feeling peppy by 10pm.

Apart from Harvoni, have you noticed that even if you get the same number of hours, that going to bed earlier gives a more restful sleep? I feel it today.

Thanks to you @Keanu. That meal sounds wonderful. And I'm glad your liver liked it too ;-) Moderation is key. I eat lean red meat once every 2weeks-ish. Too expensive! Pasture raised/organic fed only. 

Mugwamp and @concerned dad I also want to thank you for bringing up this topic.  I just tested Undetectable 4 weeks into treatment and didn't think of changing my toothbrush and razor. I certainly did this morning. 

Hoping everyone has a peaceful and healing day.

Title: Re: Harvoni Side effects
Post by: Katie on March 02, 2015, 02:27:19 pm
Hi everyone!  BG:  Actually I had the Brain Fog and horrible fatigue for several years from Hep C.  On my day 2 with Harvoni they basically disappeared and I also started sleeping and dreaming.  I hadn't had a truly good night's sleep in close to a decade so I hope it reverses for you and your treatment will be smooth sailing.  I know it varies from person to person.

Welcome Art and hope you do well too.  Congratulations on your journey to stomp out this alien virus monster!  I took my pill in the evening too so I wouldn't be eating or drinking anything that might diminish the effects of Harvoni and it worked well for me.

Be sure to keep hydrated to flush your system.  That is very beneficial.

Good hearing from you Keanu.  Hang in there.  The time goes by quickly (like a flash actually) and my motto on eating was and is, everything in moderation and having a balanced diet.  The only thing I eliminated was supplements as I worried about interactions.

I have been off Harvoni for 5 days now and feel good.  I still wear down in the late afternoon, but I have still been in the completion stage of a major remodel and have been working hard and still surrounded with the chaos having your house upside down with clutter everywhere.  I decided going through a remodel is worse than moving...much worse!  I am finishing a small(thank goodness) oak floor today and then the rest of the baseboard and trim can be installed.  YAY...the end is near!

I will get my EOT lab results at the end of this week so that will give an indication on how it went.  Fingers crossed.  All and all, I am confident that everything went as it should because of my lasting improvements (still sleeping too) and what is really interesting is my skin looks so much smoother (large pores are no longer visible) and glowing with tone variations disappearing!  That indicates my liver is detoxifying and doing it's job!  I have experienced acid reflux off treatment more than on treatment, so I am hoping that will diminish too.

That's my report.  There is life after treatment and my mood is improving with less anxiety about not having my Harvoni security blanket.

Have a great day!

Katie
Title: Re: Harvoni Side effects
Post by: MEG on March 02, 2015, 02:32:59 pm
Ya, Bg, it seems we all experience Harvoni a bit differently. Some people feel great within a few days and others have various side effects like the headaches, nausea, brain fog.

I had a pretty severe cold/sinus infection when I began and I knew the fatigue and muscle aches were not Harvoni. Dull headaches and nausea almost instantly relieved by drinking water were the main effects for the first 2-ish weeks.

Since then(I'm into my 6th week as of today), the headaches and nausea are gone, I have periods in which I feel total clarity and joy.  It feels wonderful. They pass and my baseline hcv brain fog returns, but I view them as a sign of much more improvement to come.

I think eating a balanced diet and lots of fluids(coffee and caffeinated sodas don't count) is the best way for us to allow our bodies to heal and help the Harvoni do its job.

Best luck!
Title: Re: Harvoni Side effects
Post by: Katie on March 02, 2015, 02:52:41 pm
Good Deal Meg!  Glad you are feeling so much better and on the road to recovery in more ways than one.

I better get at it or I won't get anything done today so all of you keep spreading the love and positive energy as the support is so important. 

Be good to yourselves!

Katie
Title: Re: Harvoni Side effects
Post by: MEG on March 02, 2015, 03:23:35 pm
Thanks Kate! My goodness, I read your post above detailing what you're going to do with your remodel and I am so impressed. I knew you were remodeling but I didn't get the extent until this morning. You go girl!

I also have to go to the library as I'm beginning a Spanish class tonight. Typical procrastinator that I am did not get the necessary reading material yet. LOL.

Title: Re: Harvoni Side effects
Post by: concerned father on March 02, 2015, 03:51:22 pm
Thanks so much @Katie, @Bob, ya it took a couple of days after I saw my pcp because she wanted to assure with my hepatologist that doxycycline or amoxacillin were compatible with the Harvoni. 

Interestingly, I felt so much better by last nite that I could not fall asleep until after 3am. I'm now experiencing what others here have re: insomnia/Harvoni.  Tonight it's hydroxyzine(antihistamine/antianxiety med) if I'm still feeling peppy by 10pm.

Apart from Harvoni, have you noticed that even if you get the same number of hours, that going to bed earlier gives a more restful sleep? I feel it today.

Thanks to you @Keanu. That meal sounds wonderful. And I'm glad your liver liked it too ;-) Moderation is key. I eat lean red meat once every 2weeks-ish. Too expensive! Pasture raised/organic fed only. 

Mugwamp and @concerned dad I also want to thank you for bringing up this topic.  I just tested Undetectable 4 weeks into treatment and didn't think of changing my toothbrush and razor. I certainly did this morning. 

Hoping everyone has a peaceful and healing day.

Meg, I'm happy that you are undetectable after 4 weeks, I hope my daughter will have the same results and will be free of this monster for ever.
Title: Re: Harvoni Side effects
Post by: hope4cure on March 02, 2015, 05:37:48 pm
10 more days to go for my 8 week treatment. Feels like it's going bye real fast even with the fatigue. These last 3 days seem to be worst so far for me and I'm guessing it will continue until the end. It almost seems like with each new bottle of meds, the fatigue changes for me for the entire bottle. One bottle I seemed ok, but the next I would feel it more and now this last bottle, I really am experiencing the fatigue even more so. I'm not sure if each batch of pills can really be different from one another, but thinking back that does sure seem to be the case for me.
Title: Re: Harvoni Side effects
Post by: Karen1124 on March 02, 2015, 05:48:26 pm
Congrats Meg!! Best wishes to you!!
Title: Re: Harvoni Side effects
Post by: Keanu2015 on March 02, 2015, 07:50:43 pm
Hello friends!
Katie, nice hearing from you also! I'm glad to see you are doing great and getting close to finishing your project- that's terrific! Thanks for your always encouraging words. I totally agree with you on diet. Hope4cure, sorry you're experiencing so much fatigue. In 11 days I haven't experienced that but once. Just using this calendar year I'd have to say that my 10 other days so far while taking this drug are better than any other day I had in 2015. I am full of hope and optimism now and my pain is getting less and less with each passing day. Drink more water! it removed my headache a few times in the early going and it also boosts metabolism to burn more dreaded fats. I hope you'll start feeling better soon. I think you will as I am really starting to believe in this drug now. Meg, I'm glad you are UD! that's fantastic! and I agree about the right red meat, (if any is), being too expensive ..it really is! ...Good luck with Spanish class. Have a nice evening all!
Title: Re: Harvoni Side effects
Post by: BG42 on March 02, 2015, 08:18:36 pm
Thanks everyone. This afternoon I felt much better. I actually didn't have any kind of side effects, and felt normal. I am going to take my 2nd Harvoni pill in about an hour, and then will go to bed soon after. This morning was weird because I woke up in the brain fog, so we will see what tomorrow will bring.

Quick question. I like drinking sleepy time tea at night sometimes. (From Celestial Seasonings). Is it ok to drink decaffinated herbal tea during treatment?
Title: Re: Harvoni Side effects
Post by: Keanu2015 on March 02, 2015, 08:26:25 pm
Hi BG42,

     Absolutely! as with everything else just do it in moderation. I drink decaf green tea (made with 3 pouches) with light almond milk mixed in for taste some times at night. So far I have been progressing well on these meds and have felt nothing negative in my body so I see no issues... Enjoy!
Title: Re: Harvoni Side effects
Post by: Keanu2015 on March 02, 2015, 08:34:34 pm
BG42,

      You got me! I just fired up my kettle. lol its been a couple of days since I made myself one ;)
Title: Re: Harvoni Side effects
Post by: Katie on March 02, 2015, 08:46:39 pm
Herbal tea is fine as long as you check the ingredients.  Example:  Smooth Move for constipation has Senna in it and it really isn't good for the liver and of course same with St. John's Wort.  I enjoy a cinnamon tea with honey as I know there's nothing hiding there.

Now that I am off Harvoni, my choices will increase, but I was just really wary of mixed supplements of any kind since many haven't been tested for interactions.

Got my floor done!!!! It will need another coat but will do that after the baseboard installation in case someone drops a hammer!  HA!  I use an oil floor finish which is nice because you can actually touch it up.  I aired out the house good , but it is strong stuff.  That isn't good for the liver either so I did some trim sanding out in the shop and will finish them tomorrow.  My work is never done.   :P


Hope you don't mind the "shop talk" but it is nice to have someone to share what I am doing.  Haven't had much outside contact as I have been so busy with it, and they all think I'm crazy and too particular anyway! HA!  I like doing it and it keeps me occupied.

Until later.

Katie
Title: Re: Harvoni Side effects
Post by: kate0b1 on March 03, 2015, 06:17:54 am
@katie, shop talk away  ;), i am on the home stretch of cabinets lol, the only problem now is i don't think the wall color looks as nice with the new cabinets so now i guess i need to repaint the walls  :(. Thank goodness i feel well enough to do all of the above ! 10 days left and except for the indigestion i am not having any problems, i have been sleeping like rock but that also may be from working and painting !

kate
Title: Re: Harvoni Side effects
Post by: Islandgirl on March 03, 2015, 09:47:20 am
Katie and Kate!  I can't tell you guys how impressed I am with your remodeling ability!!!!!!  Are you self taught - just got in there and gave it a try (the first time, anyway)?  Or, just how did you learn to do all these things and have the courage to do them????  You guys are awesome!!!  Hugs,  ....Islandgirl

And, Katie, you even have a "shop" to work in......... WOW!  I wanna be like you :)
Title: Re: Harvoni Side effects
Post by: Katie on March 03, 2015, 12:25:46 pm
Good Morning Kate:  That's how it goes...you update one area and then see what else is in need.  One thing leads to another.  I've been updating one room at a time but took on both bedrooms at once and it got a bit out of control.  You go girl and glad you're doing well...10 days...isn't it amazing! 

I had some acid reflux towards the end and for the first five days off treatment, but yesterday was pretty much fine.  I am hoping it goes away.

Hi Island Girl!  How are you feeling off Harvoni?  I am doing really good.  Clear headed, no brain fog and sleeping so feeling confident.  I'll get my EOT test this Friday so have my fingers crossed.

I am a Jack of All Trades.  Field research often means being handy with tools and mechanical.  If something breaks, you can't run to town to replace it.  I am a great one for How To Do books and now U-tube videos, but at this point understand most things.  I designed and built my house, hiring out the framing but actually did most of the wiring and plumbing and finish work myself.  Lived here for 10 years without power (Generator and put in a 12 V light and water pump.) and finally got on the grid in 2002.  Pure Joy!  I did look into alternative off grid power, but it was way to expensive for me at that time.  There is much more to that story, but I think you get my drift. 

Nothing you want to fix requires a PHD!  Just the desire to do it, so on things I haven't attempted before, I study what I want to accomplish, make sure I have everything I need, ask questions from knowledgeable people as needed and dive into it.  Always figured you can do anything if you want it bad enough, plus, I can't afford to hire professionals, but I like nice things.  It's a great learning experience, even when you have failures, which I have had.  We have rough framing carpenters that say they are finish carpenters and I have had bad experiences.  Half the time I have to redo what they do, as I am fussy and want it my way.  The really good ones are always busy (and very expensive) working on the high priced homes.  So, I do it myself!

Another day.  My floor looks awesome and today I have to work on finishing the trim for the closet, and the guys can come back.  WHEW...With my bad knee I can't kneel down for baseboards anymore.   :-\

Have a wonderful day!

Katie
Title: Re: Harvoni Side effects
Post by: Teddi on March 03, 2015, 12:39:23 pm
Started Harvoni on Dec 26th on the 12 week plan, so I have about 3 weeks to go, 4 week results showed <15 on the VC down from 4 million but still detectable, I had the normal side effects, headache and fatigue for a couple of weeks and they pretty much went away.  For the last week or so I have really bad joint pain.  I've had joint pain before but not like this.  I know that the joint pain is a symptom of HC, i would think if the virus is getting knock out of me the pain would be subsiding not getting worse.  Is this perhaps a side effect of the meds.  Once the HC is gone will my joints start to repair themselves or am I stuck with this pain?  I would appreciate any help on this subject, thanks

teddi
Title: Re: Harvoni Side effects
Post by: nadewitt on March 03, 2015, 03:26:36 pm
I got the results from my 2 week labs and was surprised that my viral load was not tested. Is this usual?
Title: Re: Harvoni Side effects
Post by: MEG on March 03, 2015, 03:38:30 pm
@Kate and Katie! I want to join the chorus with @Islandgirl and scream out how impressive you are with your skills. And yes, shoptalk away, Katie. Building your own home living off the grid for all that time? Doing your own electricity and plumbing? That's incredible. In Alaska, no less. Bless you. I love working with my hands(gardening, knitting) but my mind just can't wrap itself around design concepts. I'd love to see pix of both of your work some day...

Title: Re: Harvoni Side effects
Post by: Keanu2015 on March 03, 2015, 03:39:08 pm
Hello everyone,

    Hi Nadewitt, people here have been sharing a lot on this subject. It seems to me that what is most common is that folks are getting clinical labs at 2 weeks and Viral load labs at 4 and 8.

I personally am on day 12 and no labs have been scheduled for me period.
So I'm not the authority on this by any means.
Title: Re: Harvoni Side effects
Post by: MEG on March 03, 2015, 03:45:17 pm
Hi @nadewitt, ya, I agree with @Keanu. There seems to be variation about when and how often labs are done depending on the physician treating.

Some people do get 2 week viral load(I got it done at 4 weeks-on-treatment) but they're not necessary. 

And like Keanu said, some folk don't get labs done until EOT.  My doctor now  wants liver function tests and viral loads every 4 weeks until 12 weeks after EOT. But, it seems to be his preference rather than standard of care. 

How often does your doctor want future viral loads and liver function tests done?  Are you on the 8 weeks or 12 week regimen?

Most importantly, how are you feeling?
Title: Re: Harvoni Side effects
Post by: Keanu2015 on March 03, 2015, 04:09:10 pm
Hi again everyone!

      Meg, wow! just noticed you're undetectable! awesome! congrats to you! I do like the fact that your doctor is ordering the tests at the intervals you explained here. I wish that was the case for me. I'd love to know what's happening at 4 weeks-- bare minimum. Do you feel better?
And yes thanks Meg.. Nadewitt ... how are you feeling? Did you notice a drop in liver levels Ast.. Alt?
Title: Re: Harvoni Side effects
Post by: nadewitt on March 03, 2015, 06:18:02 pm
I did notice a drop in my liver enzymes. They are not normal yet but lower than before I started treatment. I am on a 24 week program. Not sure how often labs are going to be. I was surprised when the doctor's office called and scheduled the 2 week labs. At the beginning I was told no labs and no doctor visit until 6 weeks in. Like I've said before, not a good relationship with the doctor. There is a lack of communication.

Keanu2015 can you get lab tests ordered by your primary physician? When I thought I wasn't getting labs I contacted my regular doctor and she sent me a lab form. I plan to use it next week since they didn't check my thyroid and that is one of the things that were messed up in previous treatments.

I have had a headache since the first pill. Sometimes it is worse than other times but it is always there. I have also experienced a lot of discomfort in my stomach, a lot of acid reflux and other digestive issues. This is easier than my other treatments but it is still no fun feeling bad and having to go to work and stare at a computer all day. By the time I get home I feel worn out.

Thanks for asking.
Title: Re: Harvoni Side effects
Post by: BG42 on March 03, 2015, 06:52:00 pm
Day 2 down and I'm hanging in there. I am drinking an exaggerated amount of water (meaning I'm purposefully drinking just a little more than I probably need to). So far it seems to be working although it is only my 2nd day. Yesterday was rough with the fog though. I'm a teacher so you can imagine the frustration when I have to be "on". Yesterday I was struggling to keep sentences straight during my teaching. Luckily, today wasn't the case and I am hopeful that the fog won't be a constant as it sort of isn't an option with my profession and all. Today I feel great though. I hope the rest is like today, but that is probably naive.
Title: Re: Harvoni Side effects
Post by: kate0b1 on March 03, 2015, 06:55:23 pm
@bg42, I'm sorry I'm chuckling about having a foggy teacher, i don't really mean it though, it is hard to go to work everyday and have all your wits about. I felt the fog kinda came and went but after a few days it was fine. It all about the water right lol

kate
Title: Re: Harvoni Side effects
Post by: Keanu2015 on March 03, 2015, 08:08:52 pm
Hi All!
BG42... the fog and dizziness, sleepiness left me after just a couple of days. The first week was really it for that stuff. I took a lot of advice from folks right here and it really helped me. I haven't had much if any of those things in my second week. I'm on day 12 today and I felt pretty good all day long  :) Hang in there! Here are 2 great tips that made me feel better instantly. Make yourself some Quaker oatmeal with raisins for breakfast. Also mix a cup of Dannon Activia vanilla light yogurt with a cup of chopped up ripe strawberries on another breakfast day. Tuna and Salmon are good foods for the liver. Onions and garlic are great also. If you like cereal try Kashi or Puffins products. They help with fiber, are low sugar and don't blast you with iron totals. I always thought Fiber one was great. Little did I know the iron boost was off the chain so I'll have a bowl of that once a week now if that even just because I dont want to waste it! lol (it still has great fiber)
Nadewitt... are you drinking lots of water? water kills any headache when I feel one coming on. Also you should load the "my fitness pal" app onto your smart phone (BG42 also!). Watch your fat, sugar, cholesterol, sodium, vitamin A, C, Calcium and iron levels (among others) right there. Consume foods and drinks that will cater to keeping the sugar, sodium, Iron and A lower on a daily basis. They give you bench marks for what your normal levels should look like by the end of the day. I have been making sure my C is high because it helps against viruses and helps absorption. My calcium level is higher too but near normal on scale, because it usually is collateral (I drink a few cups of milk) to maintaining vitamin D which is important for us. The way you eat will go a long way in helping you reach your goal with less complications. You probably know this stuff already being down this road but sometimes it's good to hear all over again. I'm glad your liver enzymes are down! that's great! Also thank you for the advice! I will contact my regular doc tomorrow!
Title: Re: Harvoni Side effects
Post by: Islandgirl on March 03, 2015, 08:15:41 pm
Katie, I've found a way to do many things using the same mindset - just not to the extent you have.  Maybe when my energy comes back I'll attempt a bit more adventurous do-it-myself projects!  You go girl!  hugs,  ....Islandgirl
Title: Re: Harvoni Side effects
Post by: MEG on March 03, 2015, 08:43:49 pm
@Keanu Thanks. As one of my British friends says when she's excited, "I was pretty chuffed when I saw the NONDETECTABLE results."

I'd want to know what was going on too, frankly. Are you on the 12 or 24 week regimen? If insurance isn't an issue, I'd ask your doc and hear what his/her rationale is for no more labs until EOT. Can't hurt, right?  I'm so glad to read that you're feeling better. Those first 2 weeks I had the H side's but since then, nothing. Just healing/recovering from this sinusitis/cold. Finally got on antibiotics late last week and they're making all the difference in the world.



Title: Re: Harvoni Side effects
Post by: MEG on March 03, 2015, 08:55:09 pm
@Nadewitt, I'm glad to hear your liver functions were down. It's most likely a proxy for your viral load being down too. I'm now remembering that your treating physician is not good with communication. That is so frustrating.

So do you have an appt for the 6 week mark?  If you're on the 24 week regimen, I'd want to make sure the viral load trajectory is downward at that point because they can always add Ribavirin if it's not.

I agree with Keanu re: drinking lots fluids(if you don't have a heart or other condition for which you have restrict your water intake) for your dull headache. It helped me enormously. The water worked like an instant pain killer. I've kept it going, into what is not week 6, and I've not had a Harvoni headache since week 2...

My gastric sides(nausea) also disappeared after week 2....hopefully, your sides also diminish....I trust they will.
Title: Re: Harvoni Side effects
Post by: MEG on March 03, 2015, 08:58:18 pm
@BG I remember losing my words during an interaction with someone who I couldn't tell that I was being treated for HCV...Oy vay...

The water truly, truly helps. A nice surprise has been having these periods of utter clarity---that I've not known in many years. They pass and my mind reverts to the "ole hcv" brain again, but they're a hint of what the future can look like once I'm completely cured.  I can't wait...
Title: Re: Harvoni Side effects
Post by: Keanu2015 on March 03, 2015, 10:17:17 pm
Meg,
    It's just lovely that you have to fight a virus AND a freakin bug at the same time! geesh I'm happy to hear you're destroying them both- ha!
I'm on a 12 week regimen. Thanks for the inspirational words... "periods of utter clarity" --love it! I haven't experienced those yet but so looking forward to it! I do feel I'm close... getting better every day. I still feel like I'm in the middle of a battle though. Thanks! I will definitely ask my doc some of those questions if he ever talks to me! Island girl... good luck keeping up with Katie! she's found her gojo! however I say anything is possible for us ALL now once we whip this thing!
Title: Re: Harvoni Side effects
Post by: Islandgirl on March 04, 2015, 07:46:41 am
Keanu, don't know that I'd ever be able to catch up with Katie or Kate, but it makes me feel good to know that they are able to do it!  I'm battling what I think are sinus headaches rather than Harvoni sides.  I've never been a "go to the doc" person for most things, but I may have to break down and do it.  I've ordered some Serrapeptase that SunIsOut said he uses, so I'm hoping that will help. 

On a fantastic note :)  I have much less joint pain in my right ankle which I'd broken many years ago and have had severe pain and swelling as I age - at times requiring cortisone shots just to be able to walk.  Looks like a  normal ankle now and no shots since Harvoni treatment.  I can hardly believe it but I'm sooooooo grateful!  Gotta take my dogs to the groomer - have a wonderful day,  ...Islandgirl 8)
Title: Re: Harvoni Side effects
Post by: Keanu2015 on March 04, 2015, 06:05:22 pm
Hi everyone!

     Island girl I totally agree.. Its fantastic to see those ladies working like they are. It definitely shows us that the arrow is pointing upward! I'm glad your joint pain is gone! that's an awesome story! Thank you. Did you call doc about sinuses?
Katie & Kate btw...since your names came up... Great job! lol
Meg and Nadewitt... I called my gastro again and pressed him this am and so... I picked up my script for 2 week labs today! ;) I'll get to see Alt, Ast, D, and platelets. VL will have to wait until 4 weeks. I'm going for blood work tomorrow on day 14.
Hope you're all well today!
Title: Re: Harvoni Side effects
Post by: nadewitt on March 04, 2015, 07:14:15 pm
I am so glad. Let us know your results!
Title: Re: Harvoni Side effects
Post by: Islandgirl on March 04, 2015, 07:19:48 pm
Keanu, I'm glad to hear you got your orders for lab work!  Good job 8)  Yes, I called my doc (thanks for your encouragement) and have an appointment for 8:15 in the morning. 

While it's a long shot, I did slip on wet leaves the 12th of January and my feet went straight out from under me and I wound up flat on my back and gave my head a pretty good blow.  When they heard that they made a spot for me to come in...  Could be they'll want me to have a CT scan or something?  Anyway, I'll report back when I hear something. 

This really only started in the past couple of weeks, so hopefully it's related to sinus or Harvoni and not the crack on the back of my head :-\  I did pick up some Sudafed today and that relieves the pressure somewhat.  I called my ortho doc this morning and cancelled my cortisone shot since my ankle is so improved - this is the second month I've cancelled since it was time I could have one!  It's not perfect, but man what an improvement!  We jointly decided not to make another appointment but to just call if I decide I need it.  Good luck on your bloodwork, I just know it will be UND!  ...Islandgirl 8)
Title: Re: Harvoni Side effects
Post by: Katie on March 04, 2015, 07:38:41 pm
Thanks for the compliments and encouragement everyone.  I had a list of TO DO's upon retirement and had saved money for those projects for the last 5 years I worked.  I had to make improvements to ensure I could stay in my loved home considering my mobility issues and they are all about done.  Then the real work comes on purging all the STUFF and keeping just what I need, and of course a thorough cleaning as there has been so much dust , so it is far from over.  Over the past 3 years I have remodeled my laundry room, had a garage built so I can access my house without steps, updated and tiled my bathroom (that was a first) and now the 2 back bedrooms.  My home will be lovely when finished, although the kitchen, dining room and living room needs paint.  It is going to wait for awhile as I am burnt out.  Other than building the garage I have done at least 75% of the work myself and really enjoy it.  It is difficult for me to have someone else do work that in the past I would have done by myself, but I have limitations now. DARN!

I don't want you to think it has been easy, as it hasn't but to be honest, when I am active and move forward it is beneficial both physically and mentally, in spite of the pain.  The orthopedic doctor is amazed at how well I am doing and what I accomplish.  I figured out how to modify how I do things to get a Bang for my Buck (ie: work done for pain endured)  HA!  I was told I needed a knee replacement and back surgery 10 years ago, and I have had neither.  I just want to encourage you all to stay as active as possible.  You don't have to tear out a ceiling or paint your siding, but use those muscles and keep moving. 

Being sedentary is the worse possible thing you can do to yourself.  That old saying, the more you do, the more you can do is so true.  Start with something very small and work up to a goal you have set.  It won't happen overnight and it shouldn't but you will feel the positive difference.

I will try and figure out how to post a picture.  I got one to post, but it was way too big so will re size so you can see my pride and joy...my home.  I've been working on it since 1992.  WOW!

I get my EOT on Friday, I hope.  So keep your fingers crossed for me.  Good Luck to all of you in this battle we are all fighting.  I am honored to be in your presence.  You are all so brave, compassionate and true warriors!

Here's a big Atta Girl for Kate too!

Katie
Title: Re: Harvoni Side effects
Post by: Katie on March 04, 2015, 07:41:32 pm
Island Girl....WOW, I didn't know you fell.  Sorry to hear that.  I hate that!  Glad your joints are doing better.  That is GREAT news.  Good luck on your appointment and hope everything is OK. 

It's a bad time of year for falls, so everyone be careful out there!

Katie
Title: Re: Harvoni Side effects
Post by: Katie on March 04, 2015, 08:16:25 pm
I will try and figure out how to post a picture.  I got one to post, but it was way too big so will re size.......

OK I tried to post a picture and it takes up an entire page even when I down sized it.  I was going to start a New Topic under Off Topic Forum but I couldn't figure it out.. Hey Sun Is Out...how did you post your beautiful picture of your boat?

Thanks,

Katie
Title: Re: Harvoni Side effects
Post by: Islandgirl on March 04, 2015, 08:18:26 pm
Thanks Katie!  What a shock - one minute I was walking toward my car, looking forward with both anticipation and trepidation to my GI appt to discuss my lab results, and the next thing I knew I'd slipped on a wet leaf and was flat on my back!  I literally "saw stars" and thought I was going to back out, but didn't.  I was able to get up after a minute to determine that I didn't think I was really hurt, and went on to my appointment where I received my "undetected" on viral load and the best ALT/AST I've seen in years!

I thought later, that if I'd blacked out, I would probably have been laying on the sidewalk in the rain when the mailman found me!  Mom thought I was already gone and never even knew what happened until I got home :)  I had an appt with my chiropractor the next day so I told him about it and made sure everything was still in place.  He said it looked like I'd lucked out and was fortunate I hadn't wound up with a subdural hematoma - I'd never even thought about that!  Maybe I should have called my pcp, but I thought I was fine and I'm really hoping these headaches are not any big deal. 

Yep, we all need to be careful of falls!  I'd love to see a pic of  your home, Katie, and thanks for your good wishes 8)  ...Islandgirl
Title: Re: Harvoni Side effects
Post by: Katie on March 04, 2015, 08:31:35 pm
Glad you are following through with another check up because of the head aches.  Better safe than sorry! :-[

CONGRATULATIONS ON YOU EOT UD!  THOSE MAGIC, WONDERFUL WORDS. Keep me in your thoughts, as Friday is my D-Day.  All tests are sent out so it takes a week to get them back.  Have you heard from Nicole, at all.  I am worried about her and we are the Three EOT 2-25-15 Musketeers!  HA!

Katie

Tried to post a picture but couldn't figure out the "trick".   :o
Title: Re: Harvoni Side effects
Post by: JK9348 on March 04, 2015, 09:08:55 pm
I am on week 5 of my Harvoni treatment. I am Genotype 1B with a low  83,000 viral load. My tests at week 4 were all positive. I am on a 12 week treatment.

I have no significant noted side effects at this time. Sine I am 71 years old there are side effects of being old that can mask any side effects related to the treatment.

http://www.militarytimes.com/story/military/pentagon/2015/01/07/hepatitis-c-sovaldi-cost/21334481/

My treatment is at a local VA hospital. I am served by a team of dedicated professionals entirely dealing with Hep C. My cost is 0, nothing. I have no co pays nor do I have to deal with an insurance company.
If you are an older veteran get tested. You may qualify for treatment. The only way to find out is to ask.
See link above.
Title: Re: Harvoni Side effects
Post by: Katie on March 04, 2015, 09:17:09 pm
Hi JK.. Thank you for your service and you deserve to have the treatment at no cost.  Your advice to your fellow veterans is GOOD and thank you for saying that.

When you say "positive" do you mean they were good or that you are still detected.  What we are all hoping for are negative tests for the viral load.  I am hoping you just meant your test was going in the right direction.

Good luck and keep us posted on how you are doing.  I am 68, so am right behind you!  :)

Katie
Title: Re: Harvoni Side effects
Post by: Islandgirl on March 04, 2015, 09:55:07 pm
Thanks Katie 8)  I think the last post I saw from Nicole was 2/28 on one of the "post treatment" topics.  My doc tests a bit different than most on the forum - I have one coming up on March 25 and the last one will be September, but she says she doesn't really see anything changing.  Sure hope she's right!  Keeping my thoughts positive and fingers crossed for you!  For all of us!!

@JK ditto what Katie said, and welcome!  Katie is right behind us and I'm just ahead of you guys - a young 73 - also 1b, like you - just completed 12 wks Harvoni.   I'm really lucky that I have very few sides related to my age - other than some arthritis in an ankle that I broke when I was 21.  The Harvoni actually helped the swelling and inflammation in it!!  These recent headaches have really gotten to me as I'm not normally a "headache person" and they are different than the occasional headache while I was still taking the Harvoni.  I'll keep you posted after I see what the doc has to say.   BTW, Katie, my LT(15 yrs) boyfriend is also your age ha ha.  In our minds we are all young ;) 

OK, I'll stop joking around.  JK, I sincerely hope you have a successful and smooth treatment with the ultimate outcome of being able to say you are CURED!   God bless you and thank you again for your service.  hugs to all, ....Islandgirl 8)
Title: Re: Harvoni Side effects
Post by: kate0b1 on March 05, 2015, 06:39:00 am
good morning girls (and guys), island girl, you did not tell us that you fell  :-* i hope you are ok and a CT scan is never a bad idea. keep us posted, @katie pics please lol, i have no idea how to but id love to see lol. I am thinking i will be done the cabinets by next week witch is my EOT also (labs on friday). my kitchen apparently got MUCH bigger after i started this project lol. but it is super clean now and almost organized (i still have to repaint and do my pantry but I'm excited to do that while I'm waiting for the BIG labs on june 5th.

good day everyone

kate
Title: Re: Harvoni Side effects
Post by: BG42 on March 05, 2015, 09:30:41 am
So now that I am on treatment, I'm reading even more about harmful things to the liver (besides the obvious alcohol etc.)

Looks like from things that I'm reading Niacin can be toxic to the liver and isn't recommended to have over 100 mg per day of Niacin.

Bummer because I like to drink "Spark" sometimes. It's an energy drink that gives me my caffeine fix when I'm not in the mood for coffee.

So I guess I'm not going to have more than one Spark in a day from now on.

What else is bad out there? I hear Vitamin A also?
Title: Re: Harvoni Side effects
Post by: Islandgirl on March 05, 2015, 10:38:04 am
good morning girls (and guys), island girl, you did not tell us that you fell  :-* i hope you are ok and a CT scan is never a bad idea. keep us posted, @katie pics please lol, i have no idea how to but id love to see lol. I am thinking i will be done the cabinets by next week witch is my EOT also (labs on friday). my kitchen apparently got MUCH bigger after i started this project lol. but it is super clean now and almost organized (i still have to repaint and do my pantry but I'm excited to do that while I'm waiting for the BIG labs on june 5th.

good day everyone

kate

I had a CT scan after my doc appt this morning.  It may be only sinus pressure, but did the CT just to rule other things out.  Yep, I did the classic "banana peel slip", except it was wet leaves on the slightly sloped sidewalk.  I was on the ground, flat on my back before I had time to realize it was even happening!  Should get results on the scan tomorrow, hopefully since I'll have to wait until Monday otherwise.  Good luck on your labs!  ....Islandgirl 8)
Title: Re: Harvoni Side effects
Post by: TTSP on March 05, 2015, 11:42:12 am
Now that I have gone a full week, I can say I have not experienced any side effects outside of what was expected. Since I have dealt with Meniere's disease for quite some time. The symptoms are so similar! Of course the worst discomfort of Meniere's is the dizziness and nausea. It also degenerates the ability to hear.

I have gotten the dizziness and nausea somewhat under control with vestibular therapy. I also have become well versed in things that cause tinnitus (ringing in ears) and have had to constantly drink water to flush sodium out of my system with Triamterene-HCTZ (diuretic) So actually having Meniere's has in a round about way been a blessing in prepping me for Harvoni!

1b naive/Harvoni 12 weeks/Clean and sober 25 years.

I'm not suggesting what I do is the answere for anyone else, what has worked for me is to avoid all stimulants. I can't even drink any amount of coffee let alone any sort of energy drink. It all causes tinnitus. Like Lucinda the RN/moderator here say in her article, even decaffeinated coffee has caffeine in it.

Best Wishes to everyone. 8)
Title: Re: Harvoni Side effects
Post by: Keanu2015 on March 05, 2015, 01:04:20 pm
Hi Everyone!

     Just got back alive from my drive in the blowing snow. 2 week labs are done- I'm looking forward to my results in a couple of days! Hope the Liver enzymes are down big time! Nadewitt -Thanks for your well wishes!

   Agreed TTSP decaff does have caffeine in it, however because it has little to no effect on me I can drink more  ;) Outside of that I drink absolutely nothing with caffeine or carbonation in it.

Island girl so sorry you fell.. oh my goodness! that doesn't sound good the way you hit! Perhaps you had a mild concussion, (headaches?) Good call on the scan! Hope you check out ok.

Hi BG42 Try to keep your iron, vitamin A, sodium, sugar and processed foods (fats etc.) in range or low according to you daily intake (MG or %) totals. Vitamin C from natural sources is good. Vitamin D and Omega 3 are good too. You get those from fish such as salmon and tuna along with some grains. low fat yogurt (with probiotics) is good to help digest food better. That takes strain off your liver. I'm brainstorming from my own diet right now. Just throwing you a few tips I'm using which I learned here and various other credible sources.

Katie and Kate Hang in there! sounds very promising on the projects!...waiting for pics!

JK Thanks for serving brother...I can say they do take care of us vets! Good luck!

Title: Re: Harvoni Side effects
Post by: Islandgirl on March 05, 2015, 04:44:33 pm
Thanks Keanu, Kate, Katie and everyone. :) 

My doc did a lot of checking my reaction to light, sound, reflexes, walking a straight line - you name it - and couldn't find a clue to my pressure and headaches and ordered the CT Scan STAT.  I got a call about 2:00 telling me the results are negative!  So we're treating it like sinus and will see how it goes.  I was able to take a long nap as I had little sleep last night and am taking OTC pain/sinus meds plus a presc steroid spray (don't plan to use the spray much if I can help it), along with good ole salt water.  He does think I had a concussion but thank goodness no sign of subdural hematoma.

Looking forward to hearing your 2 wk lab report, Keanu, I know it's gonna be great!

Yes, they do take care of our vets!  And as a mom who's son died from Hep C that went into liver cancer, our family is eternally grateful for the help and support he/we received from the VA even though he didn't make it though. 

And thank God for the advances we have in HCV treatment today! 

Blessings to all 8)  ...Islandgirl
Title: Re: Harvoni Side effects
Post by: SunIsOut on March 05, 2015, 06:01:52 pm
Hi, I saw the note asking how I post pictures and the instructions are below.  I hope this helps if not let me know and I will try to explain it a little better.

(https://farm9.staticflickr.com/8635/16541840399_143d546ba2_z_d.jpg)

To post a picture like the one above. You need to click on the Photo icon that is supplied when you do a reply on the forum and that will open a bracket so that you can paste the URL.  You must have the photo on the internet in a site like www.flickr.com (http://www.flickr.com) in order for you to copy the image URL.

Code: [Select]
[img]put your url address here like flicker.jpg[/img]


I am lucky to not get sinus infections anymore but do use a Netti pot at the first sign of a cold or allergy and find that little device to be heaven sent.  Not sure if others use this as well.
Title: Re: Harvoni Side effects
Post by: Katie on March 05, 2015, 06:10:27 pm
Hi, I saw the note asking how I post pictures and the instructions are below.  I hope this helps if not let me know and I will try to explain it a little better.

(https://farm9.staticflickr.com/8635/16541840399_b9d7274059_m.jpg)

To post a picture like the one above. You need to click on the Photo icon that is supplied when you do a reply on the forum and that will open a bracket so that you can paste the URL.  You must have the photo on the internet in a site like www.flickr.com (http://www.flickr.com) in order for you to copy the image URL.

Code: [Select]
[img]put your url address here like flicker.jpg[/img]


Thanks Sun Is Out. That's my problem. My photos are just on my computer and don't have them in that format.  Guess I can't share my photos.  :(

Katie

I've been using a Netti pot for years and even use it after I do my woodworking due to the dust...in addition to a dust mask.  It really is a help!
Title: Re: Harvoni Side effects
Post by: SunIsOut on March 05, 2015, 06:53:17 pm


Thanks Sun Is Out. That's my problem. My photos are just on my computer and don't have them in that format.  Guess I can't share my photos.  :(

Katie

I've been using a Netti pot for years and even use it after I do my woodworking due to the dust...in addition to a dust mask.  It really is a help!

Hi Katie,

Flickr is free and you can open an account and make your pictures private so no one can see them in Flickr but you can share them with friends like on the forum using the technique I just described.  I will admit that it takes a little effort to learn this but I am far from doubting your DIY skills.  I too am working on my home and did all my crown molding, recessed lights, and have taken my kitchen cabinet door off to replace hinges and repaint.

I have new appliances coming next week and the refrigerator has a water line coming from underneath where they drilled a hole in the hardwood floor instead of through the wall and did not put a shut off valve in place so I have to rip that out and do it right which back to your point is you cannot trust the contractors and this was in place before I bought the home some 10 years ago.

Here is a picture of what my backyard will look like later in spring;

(https://farm4.staticflickr.com/3665/8879845203_152d195142_z_d.jpg)

But......................Here is what it looks like now and it is snowing like crazy outside today;

(https://farm9.staticflickr.com/8590/16540817098_5149386416_z_d.jpg)
Title: Re: Harvoni Side effects
Post by: SunIsOut on March 05, 2015, 07:00:47 pm
Okay, Back to our regular scheduled programming.

I have been on Harvoni for one week now.  I have been taking some time off from work to adjust to this medication.  I do computer work pretty much all day but I fatigue out.  I did have some of this brain fog last week and had a really hard time conducting a meeting and felt like I just got out of high school and was not constructing thoughts and sentences as I normally do.  I have used this time to work about 4 hours a day on the house remedial labor inside and doing light project planning work.

I do not have headaches or nausea and I really think you could not ask for a easier treatment than this.  I have all my vacation and sick time available as I rarely take time off.  Once again only fatigue and not feeling like I have optimum control of my thinking faculties but life is good none the less. :)
Title: Re: Harvoni Side effects
Post by: MEG on March 05, 2015, 08:00:11 pm
Hi Everyone! My goodness. Gone for a day and Keaunu is getting labs done(!), Island girl, thank God, has a good CT scan---my head hurt when I read your description of how it happened.!   I hope you get relief from the sinuses pain. For me it lingered for so long this winter that it turned bacterial, but I feel so much better as I finish my antibiotic script. I'm so glad to hear how your ankle improved while on the H...that's amazing. I suppose the chronic inflammation we had while hcv positive may have made inflammation in other places in our bodies worse? It does make sense. What a pleasant surprise for you.

Katie Fingers crossed for you tomorrow...how long will it take to get the result?

JK Yes, thank you for your service and you deserve every H pill available to cure you.!  It sounds like your treatment is going smoothly....may it continue.

TTSP  Nice to meet you. It sounds like you're managing great too. What is vestibular therapy?

Peaceful evening everyone!




Title: Re: Harvoni Side effects
Post by: Keanu2015 on March 05, 2015, 08:42:52 pm
Hi Meg! lol yes I finally got my doc to listen to me. He wouldn't allow VL for some reason?... That's happening at 4 weeks, so 2 more. Maybe he doesn't want to risk me seeing little movement? Not sure why. He did allow me to see Alt, Ast so that's in there. That's fine with me as mine were off the hook before I started this medicine! I think there's only one way for those to go. I requested vitamin D and platelet levels as well. I did that because I saw where some folks on here had found issues in those areas and I want to know! I'm happy to hear you're feeling better... finally! :)

Katie sorry you can't show your pics. Maybe you can move a few of them to FB? (If you're a member that is?) and load from there? I'm not sure how this works either though I haven't tried.
Island girl- glad things are ok with you! scary stuff!
Also thanks for the encouragement! I'm praying to see some downward movement.
Sunisout I hope you start getting a bit more clarity sooner than later! Sounds like your professional life really depends on it! I'm sure it will come soon. I'm starting to feel those moments here at 2 weeks. Hope everyone is doing well tonight!
Title: Re: Harvoni Side effects
Post by: Islandgirl on March 05, 2015, 09:54:13 pm
Thanks!  The experience was a wake up call in more ways than one.  My 91 year old mom has lived with me for the past 6 years and if something happened to me....  I have longer term plans made but need a better interim pain. 

I do use the squeeze bottle version of the netti pot and it works extremely well.  I think I hurt so badly that I really didn't think about getting some relief that way. 

Great pics, SunIsOut!  I need to replace my kitchen appliances and cabinets, but first may be involved in a house rehab my BF and I are looking at as a rental property potential.

I'm off for bed to see if I can catch up on lost sleep!  Sleep well everyone - I slept so well while on Harvoni that I miss that bene :)   ...Islandgirl
Title: Re: Harvoni Side effects
Post by: Katie on March 05, 2015, 09:56:39 pm
Just trying this out.  Thanks Sun Is Out...Beautiful groomed yard.  Mine is  a bit more natural.  :)

I joined Flickr as Sun Is Out suggested  and will try to post a picture of my deck flowers.  Can't wait to have their beauty again this year.  Hopefully it will work!

(https://www.flickr.com/gp/129955294@N05/saaa70)

I get my EOT results tomorrow.  So will let you know how that goes!

Here is a picture of a stream walk I took and you'll notice two young brown bears on the shore.  This was back in 1992.  I miss my field research.

(https://www.flickr.com/gp/129955294@N05/890710)


Katie  (fingers crossed I figured out the photos)  Doesn't look like it's working.  hmmmmmmm
Title: Re: Harvoni Side effects
Post by: MEG on March 05, 2015, 10:20:20 pm
Haha, Keanu....I don't think you need 2 week viral loads. No matter what they are(neg or some hcv critters still around) the treatment protocol won't change...your ast and alt will give you a hint. If they're down at all, then you know that your kicking hcv outta the house ;-)

Katie, shux. I can't see your pix...hmm. Looking forward to learning that you're UNdetectable!

Sunisout I'm so sorry that I forgot to mention how beautiful your yard is.  Ahh, the snow. I lived in the DC area a few years ago and we had a pretty snowy winter. This one is breaking all records, I think.  Your H brain fog may begin to fade out. It seems that the first couple of weeks are hardest for people re: brain fog. It is really weird isn't it when all of a sudden you can't manage a conversation.  During my first week of H, I had to make flight plans which involved landing in one city and departing from another. I could not do it. My brain became overwhelmed and couldn't figure out what was a pretty simple task. I've not had those kinds of episodes since week, 2....




Title: Re: Harvoni Side effects
Post by: SunIsOut on March 05, 2015, 10:31:42 pm
Just trying this out.  Thanks Sun Is Out...Beautiful groomed yard.  Mine is  a bit more natural.  :)

I joined Flickr as Sun Is Out suggested  and will try to post a picture of my deck flowers.  Can't wait to have their beauty again this year.  Hopefully it will work!

(https://www.flickr.com/gp/129955294@N05/saaa70)

I get my EOT results tomorrow.  So will let you know how that goes!

Here is a picture of a stream walk I took and you'll notice two young brown bears on the shore.  This was back in 1992.  I miss my field research.

(https://www.flickr.com/gp/129955294@N05/890710)


Katie  (fingers crossed I figured out the photos)  Doesn't look like it's working.  hmmmmmmm

Hi Katie,
I well document it in a reply tomorrow then delete it after you get it.  You have to make sure that the pic url has a .jpg for it to be recognize as an image.  When you click on your photo after you upload there is a download icon. If you press that download icon you will see options for large, medium small picture.  Right click on the size you want and choose the options that says copy image location.  Each browser (firefox, Internet Explorer, Google) all have a different phrase  but you will figure which one.  If you do not get it I will do screen shots that map it out.  Everyone has to learn sometime.  :)
Title: Re: Harvoni Side effects
Post by: Katie on March 05, 2015, 10:37:51 pm
The brain fog Keanu and Meg are describing is exactly what I felt before treatment for a few years.  It was horrible with my responsibilities at work.  My verbal skills diminished at least 50% and sometimes as bad as 75% and is one reason I retired before I was planning on it, as I did like my work training technicians and analyzing the data.  I also had severe insomnia and fatigue and looked ragged all the time.  Fortunately my writing skills remained in pretty good shape so I was able to do what needed to be done, but feeling terrible the entire time.  Was so frustrating as I was always a competent public speaker.

With Harvoni all of that disappeared after the 2nd pill.  It took a little time to improve substantially but immediately I felt better than in years and years!  Week 9 and 10 the fatigue came back and then one morning I woke up and felt good again.

It is interesting how things differ from person to person.  I am confident that I will be OK, but waiting for this test and then for another 12 weeks will be difficult.

As for the pictures, evidently I have to change the format and didn't want to spend more time figuring that out.  I will try again down the road but that's it for tonight.

Glad you're OK Island Girl.  Glad your doctor is giving you some results Keanu.  It's important for your mental wellness if for nothing else.  Meg, I love hearing from you and hope you are feeling better too.  Hopefully the brain fog will lift for both of you soon.  It is horrible.  I know I worried about Alzheimer's those years I fought it, but right now I am doing terrific in that regard.  The only thing bothering me is my endurance.  I wear out easily, but then, I've been working hard with dust and fumes so that may have something to do with it.

I'll let you know how it goes tomorrow!

Katie
Title: Re: Harvoni Side effects
Post by: Katie on March 05, 2015, 10:40:44 pm
Hi Katie,
I well document it in a reply tomorrow then delete it after you get it.  You have to make sure that the pic url has a .jpg for it to be recognize as an image.  When you click on your photo after you upload there is a download icon. If you press that download icon you will see options for large, medium small picture.  Right click on the size you want and choose the options that says copy image location.  Each browser (firefox, Internet Explorer, Google) all have a different phrase  but you will figure which one.  If you do not get it I will do screen shots that map it out.  Everyone has to learn sometime.  :)

Thanks Sunisout!  I really appreciate it.  I was in a hurry so I will try again tomorrow.  I can easily miss a small step as I get impatient with different apps I am not familiar with.  I really do appreciate it.  Thank you!!!!
Title: Re: Harvoni Side effects
Post by: Mugwump on March 05, 2015, 11:03:17 pm
Here is what happens when you reach for an or and the battery slips sideways in a small boat. I needed a bath anyway!
(https://lh4.googleusercontent.com/-IPB04ZlaLXk/VPkkDBm5NwI/AAAAAAAAAWY/lhHt_3h0Wns/w673-h505-no/takingabath.JPG)

On Monday I will be getting my 12 week test results just the liver panel and depending on that result the doc will decide if he wants to do a VL test.

It is going to be a nail biter until I know for sure that I am sustained UD but I am sure I can wait another 8 plus months before I know for certain.

Till then I will go fishing! For fish like Walter. I released him on this very same lake last year and he is most likely now over 15 lbs. I hope he doesn't get too mad at me for taking him out of the water again!
(https://lh5.googleusercontent.com/-Btt0GuAZ9qA/VPkpuAYcyVI/AAAAAAAAAXE/i02lZASU9rM/w673-h505-no/walter1.jpg)
Title: Re: Harvoni Side effects
Post by: TTSP on March 06, 2015, 11:32:40 am
MEG
Vestibular Therapy is a group of balance exercises. As I stated in the original post, I'm not sure they would be helpful to anyone without Meniere's. If dizziness becomes an ongoing problem, then maybe it could. I just felt because I am doing them and have been for quite some time, they could be helpful to me dealing with additional dizziness caused by Harvoni.
I've only been taking Harvoni for a week. I have moments of the fog, and a few aches.This is not unusual for me. I've had these for a few years. Who knows?

As for my previous comment about any form of stimulants. I know first hand how difficult change is. I would not suggest anyone or myself go "cold turkey" on anything. Because of my situation I had to. After some time I got used to not having coffee or energy drinks, and was able to work 12 hour days including a 1 hour commute to and from work. It was not easy, and I'm happy those days are behind me. ;D
Best wishes to all for a speedy recovery!  8)
Title: Re: Harvoni Side effects
Post by: Keanu2015 on March 06, 2015, 11:57:05 am
Good morning friends!

        Meg, I know, I know LOL! I guess they don't like doing the VL a lot because it's more expensive and not really important at that interval. My rationale was that "hey if I"m here why not add in one more test?" ;)

**Anyway, amazingly enough I got my ALT, AST results back today! ALT 37 (Reference range= 0 - 50) amazing! AST 28  still had the flag though because: (Reference range 8 - 27) But oh my lord! 1 point high! I'm astonished!  :) Those stats were crazy high for years before beginning Harvoni tx. I also feel almost no pain in my side anymore here at 15 days either... It truly is a miracle!

Katie thank you, I agree, watching levels progress really does a lot for the psyche! I'm glad I pushed for the tests! Thank you for the guidance everyone! Hope you are all well today!
Title: Re: Harvoni Side effects
Post by: Keanu2015 on March 06, 2015, 12:14:24 pm
Hi Nadewitt,

     I wanted to thank you also personally for encouragement and helping me figure out these testing intervals and such. How are you?... Hope you're doing well today!
Title: Re: Harvoni Side effects
Post by: nadewitt on March 06, 2015, 02:58:11 pm
Hi everyone! I am doing a lot better with the headaches. I go in for some blood tests on Monday for my regular doctor. After I get the results I will post them. From the last tests it showed my platelet level was only 98 where regular is 150-450. The nurse said this was expected with Harvoni. Thank you to everyone for your support and help. I am amazed at what you have been accomplishing! I am no where near as DIY as it seems everyone else is. I loved the pictures of the spring and winter. I've got to get back to work now so I hope everyone has a great weekend!
Title: Re: Harvoni Side effects
Post by: MEG on March 06, 2015, 03:34:17 pm
@TTSP Thanks for explaining the relationship between the vestibular exercises and that it's for those who already have problems. I think you're right about doing them while you're adjusting to the H...Ya, when I got diagnosed 20+years ago, I had to slowly wean off on the caffeine. I do drink one mug of Decaf a day because I miss the taste.  Although it has a little caffeine in it, I don't feel it...

Wishing you continued healing.

@Keanu....LOVE those LFT results.  Your viral load is assuredly significantly down....how wonderful!

@Nadewitt, I'm delighted to hear that you're feeling better. Yes, keep us posted on the results!




Title: Re: Harvoni Side effects
Post by: Katie on March 06, 2015, 05:01:57 pm
I am still missing something for sharing photos as it didn't work so I will try again later.  I think I am just not seeing all of the options I need to fromat the photo correctly or I am doing it out of proper sequence!

I picked up a copy of my EOT test results and spoke to the nurse and am STILL Detected less than 12 IU/mL.  Disappointing to say the least, but my battle is far from over.  I have a doctor appointment next Thursday.  I just stopped by the office for the results today as I didn't want to wait another week.  All of my other blood work is perfect, which is good news.

During week 9 & 10, when horrible fatigue hit me and depression (which I've NEVER had before) I felt something wasn't going right as I felt so good for the first 8 weeks.  Weeks 11 & 12 I felt back to being my happy self and accomplished a lot on my remodel.  Who knows.  The nurse said she would call and speak to Gilliead to figure out what the next step is and would have the information on Thursday.  I did pose some questions for her to ask.

I am having some discomfort in the liver area, and I wear down fast.  Another thing I noticed is my eyes look tired and like they do when I am sick so stuif is still going on even though I feel so much better.  I really hate this alien monster parasite!

She reminded me that this is such a new drug that everyone is learning and this is NOT considered a treatment failure at this point.

So there it is!  I am going to finish the last of my trim today and do some cleanup as the carpenter will be back on Monday.  I must keep busy and progress is good.  This is just a small step backwards but it will all work out!

You aren't rid of me yet!   ;)

Katie
Title: Re: Harvoni Side effects
Post by: SunIsOut on March 06, 2015, 05:19:22 pm
I am trying again...My stream walk with brown bears.  We'd walk this creek every other day and count the salmon spawning and sample the spawned out carcasses, looking for missing adipose fins and recover the head along with taking scale samples to age them and length measurements.  Our walks were always shared with both brown and black bears and most of the time they were just interested in the fish.  Young grizzlies like to "fake charge" you which was always a bit concerning as we would be very close and you have to stand your ground.  They would love a chase!


(https://www.flickr.com/photos/129955294@N05/16108925483/in/photostream/)

Katie, The url has to have a .jpg at the end.  I looked at your link and it is not there. Your link ends in "Photostream" without the .jpg . When you click on your picture in Flickr it will expand.  In the lower right corner is a download icon. Press that Icon and it will give you choices for Large, Med, Small, .....  Right click on medium and chose the phrase that most resembles "copy location/image address".  Then paste that between the
Code: [Select]
[img][/img] like you did before.  You are almost there!

Here is a screenshot but it blocks the download Icon but that is the absolute bottom right icon when you click to expand your picture.

(https://farm9.staticflickr.com/8584/16549518840_4264dbfaa1_o_d.png)

Ha!  You got it.  Okay I will delete this post tomorrow so I do not junk up the forum but in case someone else wants to learn  Beautiful picture!
Title: Re: Harvoni Side effects
Post by: Katie on March 06, 2015, 05:23:59 pm
Thanks for your patience Sun!  Here I go:
My stream walk with brown bears.  We'd walk this creek every other day and count the salmon spawning and sample the spawned out carcasses, looking for missing adipose fins and recover the head along with taking scale samples to age them and length measurements.  Our walks were always shared with both brown and black bears and most of the time they were just interested in the fish.  Young grizzlies like to "fake charge" you which was always a bit concerning as we would be very close and you have to stand your ground.  They would love a chase!(https://farm9.staticflickr.com/8657/16521594227_23ed876813_z_d.jpg)
Title: Re: Harvoni Side effects
Post by: Katie on March 06, 2015, 05:31:16 pm
My house and porch flowers from last year:

(https://farm9.staticflickr.com/8583/16108971353_efb9305d04_z_d.jpg)

My bathroom:  I built the vanity Tiled the tub/shower and put in a tiled window sill.

(https://farm9.staticflickr.com/8644/16702897016_b03a7e4088_z_d.jpg)

My laundry room:  I put in a stackable unit, painted with chair rail and built a folding table which has turned into my sick plant ICU.  I really need to stop that!   :D
(https://farm9.staticflickr.com/8568/16541220858_d9545a6334_z_d.jpg)

That's enough of that!  I don't want to show you what a mess my house is in with this project and will wait until it is in better shape!

Katie
Title: Re: Harvoni Side effects
Post by: MEG on March 06, 2015, 05:41:50 pm
Oh, Katie. I'm so sad with you about still having a few hvc's hanging on. I've heard of people(Lucinda, I think) say that they've tested slightly detectable and then went undetectable on the next blood draw..

Meanwhile, keep busy, hang out with us and stay in faith that something will come through 

Here's a HUGE HUG. Meg.
Title: Re: Harvoni Side effects
Post by: Karen1124 on March 06, 2015, 05:42:32 pm
Hi Katie,
You have a beautiful home and you do excellent work!! Life is Good!! Karen
Your a brave lady those bears would scare me!! Lol
Title: Re: Harvoni Side effects
Post by: Keanu2015 on March 06, 2015, 06:04:05 pm
Hi Everyone!

Oh Katie ...My prayers are with you. You're a strong, positive person I know that either way you are going to pull through this. I have read already that several folks had a small amount detected at EOT but ended up cured at the end. Not sure how that happens or works but that means there is still hope! Beautiful pics and home! ...will be thinking of you.

Thanks Meg! I've been feeling very positive all day today. Hope you are well.

Nadewitt, Im happy you're feeling better.. great news! I'm praying we can all pull through this thing cured!
Title: Re: Harvoni Side effects
Post by: Islandgirl on March 06, 2015, 06:49:02 pm
What Keanu and Meg said plus me!  I'm thinking positive for you; for all of us, and the battle is not over.  We will win!  Please keep on posting what you find out and feel a big hug from me.

I love your home and flowers.  Like you, my yard is more natural, and in places whimsical.  The live oak trees here would never allow a truly manicured look - think free leaf mulch :)  In my Florida room I have orchids in two areas and just outside papaya trees, bird-of-paradise, a Meyers lemon, Limequat (tastes like key lime only better) bananas and a tangerine tree.  I love growing flowers that feed butterflies and hummingbirds and always grow extra parsley, dill and fennel as caterpillar food.  Yes, I too have a "sick plant" area and one orchid on the back fence (in all weather) was from a nursery sick table - it thrives and has been on the fence 3 years now :)

I'm happy to hear that most of us are doing/feeling better and I see us all as moving toward "Cured" - no room for negative I keep telling myself.  I do confess to being a bit apprehensive as I move toward my own next test on the 25th and doc appt on the 2nd of April.  We Will be cured!  Hugs to all, ...Islandgirl
Title: Re: Harvoni Side effects
Post by: Karen1124 on March 06, 2015, 06:54:14 pm
Katie I'm sorry I didn't see your post before the pictures and I'm praying for you also hang in there you got the most positive attitude of anybody I've ever seen.I'm praying for you!! Keep the faith!....Karen
Title: Re: Harvoni Side effects
Post by: BG42 on March 06, 2015, 07:14:31 pm
So today was day 5 for me. I've realized the importance of water. I know, everyone has said how important drinking water is for side effects. I got busy at work, forgot to drink water for a couple hours, and my body immediately felt it. Headache, mild nausea, and fatigue. After lunch, I just kept slamming the bottled water at work and I'm just now feeling better. So I've learned today to really just keep drinking water! And when you feel like you're not thirsty, drink more water! It keeps the sides away... for me anyway!

Have a good weekend all!

BG
Title: Re: Harvoni Side effects
Post by: Keanu2015 on March 06, 2015, 07:15:59 pm
Hi Karen,

      I was checking out your stats... Are you doing 8 weeks of therapy? Are you treatment naive?
Title: Re: Harvoni Side effects
Post by: Keanu2015 on March 06, 2015, 07:17:40 pm
Hi BG,

So true my friend! keep slugging it down! lol Have a great weekend yourself!
Title: Re: Harvoni Side effects
Post by: Karen1124 on March 06, 2015, 07:47:26 pm
Hi Keanau,
Yes this is my first time on treatment. I should add that to my profile.I go to the doctor on Wednesday the 11th to see what my viral load is and I'm a little nervous to say the least. I seen your numbers came down! Good job!! Best wishes! Life is Good! Karen
Title: Re: Harvoni Side effects
Post by: Keanu2015 on March 06, 2015, 08:58:56 pm
Hi Karen,
   Thank you! I'm really eating clean with an eye on liver health and sucking down the water! I also have a couple of fave drinks a day of a concoctions I enjoy. Half a cup of Welches light grape juice and half a cup of Knudsens "just cranberry juice" in am. Also a decaff green tea with silk light vanilla almond milk in pm. Been alternating healthy breakfast choices. One- mixing a cup of strawberries into Dannon activia vanilla light yogurt. Another is Quaker oatmeal "raisins and spice" half a packet mixed with 1/2 cup of Quaker old fashioned oatmeal and then adding some Sunmaid raisins and a bit of extra McCormick cinnamon. If it's still too bland I'll add a packet of Truvia to sweeten it up. Anyway thought I'd throw the forum a few of my secret weapons I use to help my Harvoni clobber the dragon! Also one final tip...Keep moving...exercise as much as you can handle. It keeps the blood moving and carrying the dead little suckers out!

Thanks for sharing.. Hopefully your test on Wednesday will be amazing!

Hope everyone is feeling well today! ~ K
Title: Re: Harvoni Side effects
Post by: kate0b1 on March 07, 2015, 07:49:22 am
@bg42, water, pee, repeat, that is your new mantra. I notice right away if i don't drink enough, i started carrying a bottle around with me all day to refill and have a six pack in my car. (i even gave up my midmorning coffee for water  :'().

guys the yards are so pretty, my yard is a hot mess, we have been putting in a new fence for the last two summers/fall and it is completely torn up, I'm excited for the spring to get here so i can start replanting, that is actually why i have been trying to get the kitchen done so i can get outside. and @eric I'm glad you are clean lol

kate
Title: Re: Harvoni Side effects
Post by: BG42 on March 07, 2015, 08:16:10 am
@Kate, I can't seem to get enough water! When I woke up this morning I felt like I had a hangover, and I haven't drank alcohol in a couple years. (Stopped after I got the HCV diagnosis.) I am just trying to feel "normal" this morning, and I'm having a really hard time. Add to that the feeling of just being frustrated. It's slowly getting better today, but now I'm clutching that water!

@Keanu, I had the oats, cinnamon, and raisins this morning. Delicious! I also had a couple slices of Ezekiel Bread with honey.

Today is the worst that my "Harvoni Hangover" has been and it's only my 6th morning on the drug, but the air is dry because it's cold outside and the heat is pumping. 15% humidity in my house! Luckily, our Ohio weather is turning the corner for spring and it's supposed to be in the 50's this week!

So as soon as my headache goes away I'm going on a long run today to try and clear my head and reflect a little. I'm going 8 miles today. I committed to a half marathon before I knew that this treatment was available to me. The half marathon is about a week or so after my treatment ends. I figure maybe this goal will help distract me and see me through. Plus, that finish line will feel so much sweeter after I come out of the other side of this!
Title: Re: Harvoni Side effects
Post by: Karen1124 on March 07, 2015, 08:30:14 am
Hi Keanu,
Thanks for sharing you secret weapons lol!
But my doctor is very Bossy and I have been of smoothies since July! 20 grams of sugar a day or less! Exercise daily! He say this is !UST do!! So I am following his orders. Colorado girl shared a link you should check out. Everyone have a great day!! Having a massage today!! Life is Good!..... Karen
Title: Re: Harvoni Side effects
Post by: Keanu2015 on March 07, 2015, 12:12:28 pm
Hi Karen,

      Thank you for sharing also! Wow only 20 grams! I wonder if that counts for me too at 6'1" 230? I've been around 30 to 40 grams. Fitness pal allows for 56 as a daily bench mark to lose 2 lbs per week. Where can I find this Colorado girl link? which forum? I'm very interested. Enjoy your massage and day!

Great mantra Kate! it works lol

BG42 Great job on the oatmeal! I would watch the honey though. It's very high in sugar. If you are doing everything right and still have a headache you can take some acetaminophen if you'd like. I keep Bayer around. I take a 325 miligram tab and break it into a few pieces and just take like a 1/4. Lucinda Porter posted a good article about the misconceptions of acetaminophen. In my opinion, just use it seldom and in small amounts and you'll be fine.

#16 for me. I had some Kashi Berry crumble cereal with milk for breakfast and I feel good :) (11 mg sugar but I'll watch the rest of the day) Hope everyone is having a great day!
Title: Re: Harvoni Side effects
Post by: Karen1124 on March 07, 2015, 02:07:09 pm
://www.hepatitiscentral.com/news/the_not-so-swee/

Hi Keanu,
 
Here the link on sugar.   Karen
Title: Re: Harvoni Side effects
Post by: TTSP on March 07, 2015, 03:16:15 pm
And here is another post on the same web site. (I copied and pasted because the link does not open to this article)

SODIUM and HEP C

Salt can be sneaky, abundant in curious places. Thus, identifying the following sodium-hiding spots can help with salt minimization. For those with cirrhosis from Hepatitis C, health professionals typically advise restricting sodium intake to 500 to 1,000 milligrams per day.

Reading all food labels is necessary to circumvent excess salt consumption. In the real world, we are sometimes lax in our label reading routine. Nonetheless, the following four food groups require this practice to avoid consuming unnecessarily high amounts of sodium:

Soda – Whether diet or regular, many sodas have a surprising amount of sodium. An investigation of one popular soda manufacturer’s website revealed several of their products contained between 40 and 65 milligrams of sodium per serving. Considering many people consume several sodas per day, that can add up to a lot of excess sodium.
Soup – Canned soups contain extremely high amounts of sodium for a supposedly healthful meal. Make sure to check soup labels, because just one cup of soup can harbor close to or over 1,000 milligrams of salt. While reduced sodium soups are better, they can still have more sodium than most people realize. Always check the sodium content in canned soup.
Beans – Loaded with fiber and protein while low in fat and cholesterol, beans are a staple for many health conscious folk. However, the canned versions often have extraordinary amounts of salt. One cup of plain baked beans can have over 1,000 milligrams of sodium, while ½ cup of black beans can have nearly 500 milligrams. Despite being less convenient, cooking dried beans is a great option. Otherwise, seek out low sodium beans, restrict serving sizes and always check the label.
Condiments and Sauces – While some condiments and sauces are obviously salty, the amount of sodium hiding in these refrigerator staples is surprising. For example, a leading brand of soy sauce contains 920 milligrams of sodium in just one tablespoon and ½ cup of some marinara sauces has upwards of 500 milligrams. The problem is that most of us go far beyond the serving size quoted on the label.
The four food categories listed above pose a problem to anyone who must restrict their salt intake. Representing the need for vigilance in reading nutrition labels, these foods are not the only high sodium consumables. Living with Hepatitis C that has progressed to cirrhosis is far from easy, but reducing sodium amounts will eventually become second nature. To minimize complications from ascites, ease the pressure in your blood vessels and keep a damaged liver from wrecking more havoc, avoid (or at least reduce) your inclusion of foods that pack loads of salt into your body.

I applied BOLD to the recommended daily sodium requirements. Most Americans are shocked when they realize how much their daily sodium intake is. I was.

I have been researching all aspects of Hep C for 14 years. There is an awful lot conflicting ideas. I have read this thread in its entirety. I don't remember who said it, (and its not really important who said it) "You must be your own advocate"

When I was diagnosed March 2001 a couple of things that Dr. Bacon Lead Hepetologist at St. Louis University Medical School said was, exercise but don't over do it! Salt can be sneaky, abundant in curious places. Thus, identifying the following stimulating spots can help with salt minimization. For those with cirrhosis from Hepatitis C, health professionals typically advise restricting sodium intake to 500 to 1,000 milligrams per day.

Reading all food labels is necessary to circumvent excess salt consumption. In the real world, we are sometimes lax in our label reading routine. Nonetheless, the following four food groups require this practice to avoid consuming unnecessarily high amounts of sodium:

Soda – Whether diet or regular, many sodas have a surprising amount of sodium. An investigation of one popular soda manufacturer's website revealed several of their products contained between 40 and 65 milligrams of sodium per serving. Considering many people consume several sodas per day, that can add up to a lot of excess sodium.
Soup – Canned soups contain extremely high amounts of sodium for a supposedly healthful meal. Make sure to check soup labels, because just one cup of soup can harbor close to or over 1,000 milligrams of salt. While reduced sodium soups are better, they can still have more sodium than most people realize. Always check the sodium content in canned soup.
Beans – Loaded with fiber and protein while low in fat and cholesterol, beans are a staple for many health conscious folk. However, the canned versions often have extraordinary amounts of salt. One cup of plain baked beans can have over 1,000 milligrams of sodium, while ½ cup of black beans can have nearly 500 milligrams. Despite being less convenient, cooking dried beans is a great option. Otherwise, seek out low sodium beans, restrict serving sizes and always check the label.
Condiments and Sauces – While some condiments and sauces are obviously salty, the amount of sodium hiding in these refrigerator staples is surprising. For example, a leading brand of soy sauce contains 920 milligrams of sodium in just one tablespoon and ½ cup of some marinara sauces has upwards of 500 milligrams. The problem is that most of us go far beyond the serving size quoted on the label.
The four food categories listed above pose a problem to anyone who must restrict their salt intake. Representing the need for vigilance in reading nutrition labels, these foods are not the only high sodium consumables. Living with Hepatitis C that has progressed to cirrhosis is far from easy, but reducing sodium amounts will eventually become second nature. To minimize complications from as cites, ease the pressure in your blood vessels and keep a damaged liver from wrecking more havoc, avoid (or at least reduce) your inclusion of foods that pack loads of salt into your body.

Another thing of interest: My original Hepatoligist was Dr. Bacon at St.Louis University Medical School. Got my DX their in March of 2001. Some of the things he emphasized were exercise (do not over do it!), avoid stress for me this included not over thinking stuff, I am a worry wart by nature), drink lots of water, research the disease as much as you can, and be careful. (there is a lot of misinformation out there)

Peace, and best wishes to all.  8)
Title: Re: Harvoni Side effects
Post by: TTSP on March 07, 2015, 03:21:01 pm
Sorry for the double post within that article.  :-\ My operating system or browser is not getting along with the posting aspect of this site.
Title: Re: Harvoni Side effects
Post by: Karen1124 on March 07, 2015, 03:33:26 pm
Hi ttsp,
Thanks for the post on sodium that was very interesting! Over the exercise I've already did it its called oxidation something to do with free radicals! you feel like you can't breathe and you get real weak I felt bad for two days so don't do it. Have a good day all!! Life is Good....... Karen
Title: Re: Harvoni Side effects
Post by: Keanu2015 on March 07, 2015, 09:52:07 pm
Hi Karen and TTSP,
       Thank you for the sodium and sugar articles. As far as the sodium TTSP...like you I have been very aware of it myself. Unfortunately, I haven't been sticking to 1000 mg but I try to keep it down as much as possible. As far as sugar is concerned Karen, I do way better on that. I don't add it to anything and my sweet tooth has all but gone by now. The most I see is in my cereals but I don't eat them very often and I choose healthy brands. I could do better on all of this stuff and I will do my best..Thank you! Karen for the new year I decided no more mr fat guy. I was sticking to a 30 minute plan of walk/run every other day or 2nd day depending how sore, increasing my runs by one minute every run (starting with 3 minutes first run in Jan. and ending up at 19 mins end of Feb.) I eventually fell off my goal. The reason was that after the 19 my heart started hurting a lot for a few days. When I started out for my 20 I had to quit at like 15. It would hurt when I coughed or took in a deep breath etc. I tried doing the usual things like taking low dose acetaminophen, reducing cholesterol (even lower!) etc. My blood pressure was perfect 121/73, pulse 50, but I was still having pain. Things were running through my mind like, "oh no is this from Harvoni?", I didn't want to even consider that! I don't want ANYTHING to stop me from finishing my course. I did some research and I realized that I must be suffering from costochondritis. I realized that perhaps it was because I had a car accident a year and a half ago. I had such rib pain in the back left area of my ribs that I couldn't exercise after that. Since then I fell into a rut and started gaining a lot of weight. Now I believe it caused my Hep C to advance like crazy. So Anyway here I am trying to fight all of it and regain my physique and health simultaneously. I put 2 and 2 together and it all made sense. I took a few days off and heart area (not heart!) started feeling better. I'm so glad that was the case. So yes ...take it easy is great advice for anyone! I ran for 13 today and will slowly work my way back up. Of course now I am already down 11 pounds so the runs will be less stressful  :) Hope everyone is well today! I'm looking forward to waking up to my 17th pill tomorrow am! Good night all!
Title: Re: Harvoni Side effects
Post by: TTSP on March 09, 2015, 09:19:44 am
Hi Keanu and Karen,
All of the changes are pretty overwhelming to me. I just do the best I can and keep moving towards the goal. I have not given up my blueberries yet! It seems like every meal is give and take. Its a lot better than it used to be.

Keanu, sorry to hear about your accident.

I had the weirdest day yet yesterday. Just completely out of it and worn down. I woke up this morning feeling OK and like it was just a bad dream. 12 pills down 72 to go!

Best wishes to all. :)
Title: Re: Harvoni Side effects
Post by: Katie on March 09, 2015, 03:31:06 pm
Update on remodel:  grrrrrr  carpenter called and said a big job came up that he couldn't turn down so I am on HOLD.  Not happy.....but I really like him and he does great work.  He's just branching out on his own and can't afford to pass up on a good paying job with duration.  I even baked him an apple pie, from my home grown apples!  He groaned when I told him that.  Serves him right!  HA!

Just had to share that as I have been talking about my remodel on and off for quite awhile now.

It will get there and I'll be a happy camper.  It just hasn't been that good of a week for me.  That's 2.  Wonder what is coming next?  (The old saying about trouble coming in threes!)

Katie
Title: Re: Harvoni Side effects
Post by: SIXFOOTFOUR on March 09, 2015, 04:48:15 pm
Im new to the forum, first post. But have been on and reading for a couple months.

I felt I needed to post now to thank everyone for sharing, all of your experiences have helped me work through the stress etc of starting treatment.

Short history , severe trauma put me in hospital in 1971 for 6 months had a few transfusions and recall having non A non B hep.  later in the 90s found out I had Hep C. Ive had cronic pain due to spinal damage and transient joint pain, periods of weakness and "brain fog" I sused to think it was all due to the main injury but a lot of my symptoms fall into what Ive read here so im hoping to feel better overall if I can kick this.

Was 2 times recommended through UCLA to start treatment over the last 10 yr but due to many other problems (CNS and cronic pain) did not and kept hearing for the past 10 yr there will be a better treatment available . One that I would be able to tolerate the side effects. Im Fibrosis 3-4 with viral count over 6 million and elevated liver enzymes for years .

Well it happened and after 3 months of my MD fighting with Express Scripts that I needed to go on Harvoni not their choice of Viekira Pak (that they want to use do to a cost deal) I was approved and started last Friday on Harvoni.

Im very excited and so far the side effects have not been to bad , headache ,light nausea and a little tired but Im following all of the advice from this thread , water, Tylenol etc and its very bearable.

Any way I wanted to thank everyone you are doing a great service to us new comers by sharing.

I hope that Ill be done with this in 12 weeks.   
Title: Re: Harvoni Side effects
Post by: kate0b1 on March 09, 2015, 05:40:06 pm
@sixfootfour, welcome i hope it goes easy for you.
@katie agh maybe you could send the pie my way (you know how i feel about cooking and it goes double for baking lol)

kate
Title: Re: Harvoni Side effects
Post by: Karen1124 on March 09, 2015, 06:11:46 pm
Hi sixfootfour,
Welcome to the family! We are in together. Today is my 33rd day of 56. I find out Wednesday what the viral load is I'm expecting to be undetected!! I haven't really had any side effects except for cold hands and feet. drink lots of water watch your sugar and your sodium and you should be good to go!! everyone here is very helpful and knowledgeable so if you have questions don't hesitate to ask.Life is good!.....Karen
Title: Re: Harvoni Side effects
Post by: SIXFOOTFOUR on March 09, 2015, 06:49:40 pm
Thanks again too all on the forum. I'll update at the end of a week to see if nausea ,headache and fatigue are improved. But as I previously posted its tolerable
Title: Re: Harvoni Side effects
Post by: Keanu2015 on March 09, 2015, 10:14:28 pm
Hello everyone!

Today was day 18 for me. Doing well so far. I'm looking forward to day 28 when I can get my VL checked. I have a plan if it's UD. I'm going to keep exercising hard and flush any more of those little bastards out! If they're hiding in my fat cells they're toast! Gotta get em into my bloodstream to meet up with more of my Harvoni warriors! lol To be honest, it's been tough trying to stay disciplined on my new diet. I'm not doing great in the sodium area. I hope I"m not messing up my program with that.

Welcome 6'-4! You can whip this thing and you will! It's been in you for too long, time to go!! I'm glad you got Harvoni. It's a shame they are giving folks such a hard time with approvals. Hopefully that all changes soon. Best of luck to you!


Katie I'd like some pie also :) I"m sorry things aren't going as well as you'd hoped. I know you re doing your best to stay strong. We're all pulling for you. Please keep the faith. Oh and keep a baseball bat close also... so when that 3rd thing comes you can bat it out the window!  >:(

Hope everyone has a good night's rest... I'll check back soon! ~ K
Title: Re: Harvoni Side effects
Post by: HHburme on March 10, 2015, 01:47:58 am
6F4 and Keanu....welcome !!!  You're on the way to HCV freedom. The orange magic pill works wonders. Just finished my 84 days last Friday. It really went by quickly. Was UD after 4 weeks and go for 12 wk BT tomorrow. Hopefully still UD.
Fight the Good Fight !
John
Title: Re: Harvoni Side effects
Post by: MEG on March 10, 2015, 02:04:55 am
Welcome 6'4" ;-)  This is a wonderful group of people from whom I've learned and shared so much....It sounds like your sides are manageable...Coming here kept me "honest" about my fluids---and that advice has been invaluable. Ya, keep us posted...

@Keanu It's great to hear that you're feeling well. Don't beat yourself up about the sodium. It's the intent and what matters most is that your conscious of and attempting changes. We can't, nobody can be 100% every day.

I'm feeling better from the sinusitis but have this residual fatigue---what is Harvoni's fault and what is my needing more recuperation time is impossible to for me to tease out. Not even going to try!

I do worry, however, re: my activity level. I love cycling, hiking, but I don't have the stamina to do more than slow and casual walks with my dog.  I think I'm going to get a massage to make sure my blood is circulating and that Harvoni scavenges every one of those @#%$@#%$!

Good nite to you and all,
Title: Re: Harvoni Side effects
Post by: SIXFOOTFOUR on March 10, 2015, 11:14:29 am
Yesterday was the fourth day on Harvoni but first day back at work. By end of day I was exhausted to ththe point of weakness and nausea got home and passed out  woke 2 hr later still not felling well but it was time to take my next dose (I'm doing them in evening about 9 pm) I noticed that less than an hour after taking the Harvoni I felt better.  Has any one noticed the at as they approach the 24 hr mark between pills they drop off and feel worse

Anyway thw is for th info and feedback
Title: Re: Harvoni Side effects
Post by: bud345 on March 10, 2015, 11:49:39 am
My firts ever POST!!!..Today is also my fifth day and what a difference a day makes. The first 4 days I felt no side affects but today...damn I'm hurting. Aching and feeling week and I read that the side affects were minimal. Hopefully it gets better.
Title: Re: Harvoni Side effects
Post by: TTSP on March 10, 2015, 12:19:08 pm
@BUD345 It will hang in there. Day 13 for me. Just have let the stuff run its course.
Title: Re: Harvoni Side effects
Post by: bud345 on March 10, 2015, 12:21:07 pm
Hopefully...I went from someone that went to the gym 5 -6 days a week to having difficulty moving. Just a quick question...when does the initial effects were off? Or do they?
Title: Re: Harvoni Side effects
Post by: Karen1124 on March 10, 2015, 01:34:37 pm
Hi Everyone!
Just got my 4 week results!! Undetectable!!!
Whoooooowho!!!!!!! Life is Good!!! All you newbies hang in there, Harvoni works!! Karen
Title: Re: Harvoni Side effects
Post by: SIXFOOTFOUR on March 10, 2015, 02:03:31 pm
Hi Karen

Congratulations on your results!

I noticed in your profile you were VL<2 mil is that why your on a 8 week treatment?
Title: Re: Harvoni Side effects
Post by: TTSP on March 10, 2015, 02:12:13 pm
@bud345 If you look at some of the earlier posts, you'll find that different people have different experiences. I'm fairly early in Harvoni treatment myself. I have read enough on the subject to know that my biggest enemy is fear. I look at all of the evidence and try to make the right choices. Here is a link to help from Gilead, if you register you can then get assistance from RN's on their toll free phone lines.

Personally, I keep in mind 98% of what I read on internet threads does not come directly from a healthcare professional.

Best wishes, stay positive.  :)
Title: Re: Harvoni Side effects
Post by: Mugwump on March 10, 2015, 02:14:43 pm
My firts ever POST!!!..Today is also my fifth day and what a difference a day makes. The first 4 days I felt no side affects but today...damn I'm hurting. Aching and feeling week and I read that the side affects were minimal. Hopefully it gets better.
You are right at the point where Harvoni is starting to effect the liver.  Make certain that you keep well hydrated. For the next week or so you might feel fairly weak but it will quickly pass. For me after the initial phase of the liver starting to create new cells I started to feel like superman after about 10-12 days. Also pay careful attention to your diet, eat foods that are easy to digest. Yes Harvoni can cause an upset stomach and without a doubt it will effect every one differently depending greatly on the level of liver damage.
I have stage 4 cirrhosis so it effected me more heavily than some. I became very dry mouthed, could not sleep for more than two hours at a time because of the need to urinate but all that passed as my liver started to get rid of the infection. And that is the way you have to think of this treatment, your liver is exchanging cells that were killed off by HCV and as it heals you will start to feel better than you have in years.
I noticed that if I did not drink enough fluid I became anxious and dry mouthed quite easily for the first 4 weeks of treatment. Hang in there, yes you might feel slight headaches, muscle weakness and other minor effects but they are not severe at all. I just caught a cold and so did my wife and it is a nasty bug that is going around, one of the ones that makes your muscles feel like someone hit you but over all after 13 weeks of treatment my strength is good and the side effects are minimal compared to other treatments.

@Karen1124
DO SOMETHING SPECIAL for yourself you deserve it, new shoes, whatever it does not matter. Keep up the good work, we all deserve this and need to be happy about ourselves. Beating this disease is no small thing and by being kind to ourselves we in turn can be kind to others.

@Katie
I know you will beat this disease, I want to see pictures of you catching a nice silver slab this summer smiling from ear to ear!

Eric
Title: Re: Harvoni Side effects
Post by: TTSP on March 10, 2015, 02:16:38 pm
 :-[ Forgot the link, here it is:
https://www.harvoni.com/support?evo_source=MYSU
Title: Re: Harvoni Side effects
Post by: Katie on March 10, 2015, 02:35:00 pm
Karen: YAY...great news and yes to Eric's suggestion....treat yourself and celebrate!

Welcome Bud! You'll find this forum helpful in so many ways.  It's good to have the support of those who have gone through or are going through the same journey and understand the treatment and the ups and downs!  Be kind to yourself and rest when you need it and yes, stay hydrated.

TTSP:  It is good to research and become informed but we are the true test and our experiences are important to share.  I think Gilead is very interested in how everything is going in the real world too.  I am sure they are following and will modify future treatments based on our results.

Meg: Glad you are feeling better.  Sinititus can be hard to overcome so sending you healing, colorful light to give you an energy boost!   :D

Eric and everyone:  Thanks for the encouragement.  I am doing good!  I am still sleeping good and that is a bonus and my fatigue and brain fog I experienced prior to treatment hasn't returned so I am hopeful.  I am going in for acupuncture today and see my doctor tomorrow.  I am disappointed Gilead has not responded to my email but am trying to be patient.  Keeping busy, gave away most of my apple pie and hopefully the carpenter will be here on Sunday so I can get all of my clothes out of the living room!  I did fix a drawer runner on my antique dresser yesterday which I have been fighting the saggy drawer for a decade!  HA!  Closes like a dream now!

In just a couple months salmon season will be here and I am excited to go fishing.  I still have lots in my freezer and canned up.  I love canned salmon and think I'll have to make some salmon patties for dinner tonight.  and Eric...I LOVE Coho fishing.  One of the best things about living in SSE Alaska!

Enjoy the day everyone, and keep up the battle!

Katie
Title: Re: Harvoni Side effects
Post by: nadewitt on March 10, 2015, 02:47:03 pm
Welcome to the newbies and hello to everyone else! On Sunday I started my 4th week of treatment. The headache went away for a while on Friday morning but came back with a vengeance Friday afternoon and brought nausea with it. I called my doctor yesterday and got a prescription for Zofran. It seems to be helping. When I received my second bottle of Harvoni I was looking through the paperwork that came with it and learned something scary. "Hepatitis C virus can develop resistance and fail to respond to treatment if you don't take your medicine as directed by your doctor. Resistance can happen if you miss a dose, take your medicine at the wrong time, or take less medicine than directed. When medicines are taken incorrectly, the virus doesn't get killed completely and viral mutation can happen." Makes me want to be very very careful to never miss a dose!
Title: Re: Harvoni Side effects
Post by: TTSP on March 10, 2015, 04:24:30 pm
@ meg I agree with you. My concern is generalities. I have cirrhosis, some don't. Some things are more of a concern to me. Some aren't.
I wish nothing but the best for everyone here. When I posted sodium info, it seemed to upset a few. That info was specifically for older folks with cirrhosis. Not to overwhelm anyone. I struggle to do the right thing every day. Like I said before a positive attitude goes a long way. The less I stress out the better.

Best wishes to everyone!  8)










Title: Re: Harvoni Side effects
Post by: Keanu2015 on March 10, 2015, 05:25:40 pm
Hello everyone! Day 19!
Welcome to all the new folks!
Just wanted to make a quick point to some you just starting out here. I was having minor issues, headache and sleepiness but they went away with the extreme water flushes I put myself through in the early going. However on day 4 I felt like I was in a dream and sickly a good part of the day. I think the kill off was just overwhelming my system then. Since then I have been slightly up and slightly down at times but generally steady and good without complaints. You can see my stats at the bottom. I came into this fight with pretty hard credentials and it showed me after 2 week labs that it's working. When you are spiraling down get aggressive with the water. This Harvoni stuff is serious about killing virus and it needs the dead stuff flushed out of its way. The accumulation of many dead cells could certainly cause headaches. Think about it. It makes common sense. If your digestive system is backed up you get a headache right? If your respiratory system is backed up with horrible chemicals, carbon, or diesel exhaust etc you'll get a headache. The same goes for endocrine and circulatory. Your body is sending you a message... wash me out! Got it? lol GOOD! keep drinking water and don't stop drinking water! The 300 Spartans at the battle of Thermopolaye had to pile up the dead Persians and throw some of them into the sea so there was room to kill more on the next day of battle. Otherwise they would have been piled up so high that no more killing of enemy could take place. That's my analogy and I"m sticking to it! lol
Katie I must get to Alaska! sounds so awesome!
HHBurme &Megthanks so much for the encouragement!
Karen congrats on your results! so happy for you!!
Nadewitt good hearing from you. Thanks for your warning! I agree... we must take this very seriously. I take mine upon waking every morning. After my first pill, which went at 11:30 am because I just got them and couldn't wait, I started walking my pills back slowly each day until I reached my early morning dose time. I decided that my body has more grumbly stomach acid first thing than any other time of the day so I just drop it right into the pool then and eat or have coffee an hour later. If it's a day that I run then it gets swirled around throughout my system by my heart pump. I'm imagining it forcing the medicine through hidden pockets or slamming hard into capillary endings where virus may be hiding. Please forgive me everyone. I'm a Marine! lol Hope everyone is doing well today! ~ K
Title: Re: Harvoni Side effects
Post by: Keanu2015 on March 10, 2015, 05:29:53 pm
Mugwump and TTSP

Thanks for your insight as well. Very interesting stuff. All makes sense.
Appreciate it! Lets whip some virus! Good luck all... Gotta get to my boys.. Good night.
Title: Re: Harvoni Side effects
Post by: TTSP on March 10, 2015, 06:47:25 pm
Keanu, I'm with you. Lets knock Hep C out! Glad you're feeling better!
Title: Re: Harvoni Side effects
Post by: Ruthie on March 10, 2015, 07:31:40 pm
Hopefully...I went from someone that went to the gym 5 -6 days a week to having difficulty moving. Just a quick question...when does the initial effects were off? Or do they?

They're seeming to get better after 2-3 weeks for most people. Everyone's body is different. Plus, there's just not much information yet. So it's really hard to tell.

The only thing you can do is keep up the water intake. And if your side effects are too bad, speak to your Dr about things to help.

My Dr's have me on phenergin and Prilosec for my stomach, klonopin for the anxiety and mood changes, and lots of rest for the fatigue. Plus, I'm doing acupressure.

I know it's not fun, but we can all do this! The results are worth the hell.
Title: Re: Harvoni Side effects
Post by: Ruthie on March 10, 2015, 07:36:05 pm
Congratulations, Karen! It feels awesome to know those suckers are dying off, doesn't it?
Title: Re: Harvoni Side effects
Post by: MEG on March 10, 2015, 11:53:11 pm
Hi everyone, newbies and all,

Meg here. I'm glad to hear everyone is continuing to fight the good fight.

Today was very busy(errands) and I am exhausted. But, it's much more than I was able to do just 10 days ago. I'm so grateful. What's fascinating is that again, despite feeling more tired by the hour---which usually depresses me--instead, I had this feeling of joy, of mental clarity(I've posted about this before). It felt wonderful!!! More of this to come is what I kept telling myself......

Body is begging for rest and I will close by sending you all prayers for healing and strength....
Title: Re: Harvoni Side effects
Post by: Karen1124 on March 11, 2015, 08:55:43 am
Good Morning Everyone!
Sixfootfour you ask if my vl was why I'm on 8 weeks of treatment,
I think so but the doctor really didn't say thats why he just said that that would be the best for me.
Eric said to treat myself and I had a cheeseburger last night and it taco now I'm swelled up today can't eat that junk food!! Lol I'm also buying a new pair of walking shoes!
Thank you all for the well wishes!! Have a great day everyone! Life is Good!!   Karen
Title: Re: Harvoni Side effects
Post by: chaser on March 11, 2015, 11:50:27 am
Hello all. I just wanted to share my experience so far. Genotype 1. One week from today I go for my first blood work. 21 days and pills into an 8 week regimen and hopefully the end of this. My first physical feelings after first taking Harvoni were very hard to explain. Had a few headaches, one or two bad, drinking plenty of water and liquids. Have achy back and some brain fog. Just in the last week I got hit with fatigue and an overall pooped out feeling. I'm one month shy of 64. Not an overall "bad" feeling. Just washed out. I felt after a week that something was definitely happening in me and it was a plus feeling. In some aspects of my being I feel as if a shadow is lifting. I do have some difficulty in staying asleep and I take my pill when I wake up. Maybe that is the reason, but when I decided on a time before treatment both me and my doc thought that would be good. So if I had heartburn or indigestion at night I could take antacids like Tums. So all in all, if this is the worst it's not bad at all. I'll be back. Take care all.
Title: Re: Harvoni Side effects
Post by: BG42 on March 11, 2015, 12:38:49 pm
Hopefully...I went from someone that went to the gym 5 -6 days a week to having difficulty moving. Just a quick question...when does the initial effects were off? Or do they?

I've been struggling with this too. I'm trying to get ready for a half marathon, and I've been trying to find the energy to keep training. Here's what happened to me today.

I got up this morning (Early!) with the intention of running before work. I'm on my 10th day of Harvoni. Running is my preferred way to exercise.

I had the intention of running 3 miles this morning. When I woke up, I had the classic Harvoni Headache and was in a brain fog. (Waking up in the brain fog is the worst!) My body did not to get out of bed, let alone want to run, which is sort of normal for getting up that early.

It seemed like "The Dragon" was trying to hold me back. Against my instinct I forced myself out there, and the first mile was tough. I wanted to turn back, and I was already exhausted. But then it got better! My headache faded and I was able to finish my 3 miles. By mile 3, I was feeling normal. I was still a little slower in my pace, but I had new found energy and my headache and brain fog were gone.

I'm not saying it's for everyone, but if you're used to working out or exercising, I am starting to see that the exercise helps somehow. It got my blood flowing and perhaps allowed me to sweat some toxins out. I'm not a doctor and can't really back this up with science. That's just my experience today. It's now 12:35 pm here, and I feel normal. Drinking tons of water!

If you're one who exercises, try and move a little. Take it slow if you need to, but I think that'll help. Don't give the dragon that much power. You're beating the dragon with the wonder drug and also keeping your body healthy. Celebrate it! Just my .02

BG
Title: Re: Harvoni Side effects
Post by: DLedin on March 11, 2015, 02:13:50 pm
Hi folks,

This is my first post here though I've spent a couple of weeks lurking. I thought I'd weigh in on this thread as I have had a much different experience regarding side effects while being treated on Harvoni.

I learned I had hep C in 2007 during a routine blood test. I have no idea how long I've been infected. I'm in that percentage among the population of hep C patients who do not seem to experience any notable difficulties as a result of having hep C. In other words, if it weren't for the initial blood test, and subsequent test confirming that I have hep C, I wouldn't know I have it. I know that I'm very fortunate in this regard and I count my blessings. After learning that I was infected, the only real lifestyle changes I had to make was to avoid alcohol and to have blood drawn every 6 months in order to monitor my liver functions. For me, getting used to the blood draws was harder than avoiding alcohol as I'm known to pass out when getting stuck by a needle. (I'm much better with the blood draws these days.)

As to my hep C particulars:
A liver biopsy in 2008 resulted in a pathology report that confirmed I had chronic hepatitis, minimally active (grade 1) with partial fibrosis (stage 1).
I am genotype 1a.
The latest specs I can find regarding my HCV RNA quantification are from 2009. At that time it was measured at 6,500,000.
I have previously never attempted treatment.

So, for me, getting treatment was important, but not urgent. I simply wanted to get out from underneath the cloud of having hep C once and for all. At first I was concerned that I would not be approved for Harvoni treatment because I was in such relatively good shape. However my insurance company (Blue Shield of California, PPO) did approve the treatment with a very reasonable co-pay. Gilead also came through with their co-pay assistance program which brought my out of pocket expense down to next to nothing. I'm very grateful to both Blue Shield and Gilead for their help.

I completed my 12-week treatment of Harvoni on Feb 23rd. At the 6-week mark we took a viral load test and the result came back "not detected". So now I'm waiting for 12 weeks to pass since completing treatment to run another viral load. I'm keeping fingers crossed.

As to side effects while on treatment, they were practically nil. I did not experience any "brain fog", headaches, or nausea. In fact, I felt fine the entire time except toward the end, when I believe I did experience some fatigue. That cleared up within a few days of ending treatment.

About six weeks prior to starting treatment I began a workout regimen in order to lose some weight and get in better all around shape. I worked out rather rigorously, 6 days a week, and I continued this throughout my treatment. I did drink a ton of water, not relating it to my treatment but more to the fact that I was just thirsty a lot with all of the working out. I also typically drink water throughout my day anyway. That, along with the relatively decent state of my liver, may have contributed to my having virtually no side effects, I don't know.

So that's my story. I look forward to reading posts from folks once they get 12 weeks or more beyond their treatment to hear how they're doing. While I've been very fortunate, so far, in my hep C experience, I know others have suffered greatly and am hoping (praying) that everyone gets clear of this virus.

Best of luck to you all.
-Doug
Title: Re: Harvoni Side effects
Post by: Katie on March 11, 2015, 03:06:36 pm
Hi everyone and welcome new members!  Thanks for you information Doug!  I am right behind you at ending treatment at 12 weeks.  I also do not know how or when I became infected but was diagnosed over 9 years ago seeing a doctor for a sinus infection which I couldn't shake.  All of my blood work had been perfect up to that point but I was fatigued and caught every bug that came around.  Not only was my Vit D level bottomed out but my ALT/AST was above normal alerting my doctor.  I was also experiencing brain fog and insomnia which continued and escalated over the following 9 years, which eventually led to my retirement in 2013.  I rejected all previous treatment due to low cure rate and bad side effects so was excited about Harvoni.

My treatment was terrific 85% of the time with all Hep C side effect diminishing and actually disappearing (returning weeks 9 &10 and then gone again).  Being able to sleep was remarkable as I haven't had good rest for over a decade!

Stats:  GT 1a, VL fluctuated from 2.5 million to 16 million where it bounced around and the lowest being when I began treatment.  AST/ALT normal 90% of the time.

My 4 week test came back VL  59.  My end of treatment test came back less than 12 but stated detected.

I see my doctor tomorrow, but emailed Gilead and they called me today.  They explained the same to me as what they told Paul.  To summarize it to the best of my ability, the gentleman said the trial blood work sensitivity was, less than 25 IU/mL.  There isn't a test that goes down to Zero.  The sensitivity has improved since then where my test level is now less than 12 and it depends on who is doing your test.  The recommendation is to see if replication has occurred at 12 weeks post treatment.  At that time if it comes back below the test sensitivity, they consider the treatment a success, and having another test at 24 weeks is a good idea.

What I am getting from that, is that my treatment is not a failure or considered a relapse at this time and the lab is stating "detected" since they can not count down to zero.  Remember, the virus can only be seen with an electron microscope since it is so tiny.  I will ask my doctor about that today, as what would it take for Undetected on my results.

Since so many here are stating they have received Undetected on their blood work, it is confusing me.  Lynn has tried to explain this to me over the last few months but I still don't quite get it.  Sorry Lynn!

So that being said...the waiting game is on, but I feel confident and hopeful for all of us to rid ourselves of this alien parasitic monster and am going on with my life,  until May 20th thinking I am virus free unless I start feeling crappy and having the Hep C symptoms return.  I'll be keeping in touch so please keep posting and giving support to each other as it is a true blessing to have all of you here.

Katie
Title: Re: Harvoni Side effects
Post by: mario555 on March 11, 2015, 03:55:25 pm
People getting UND after 4-6 weeks mean that they have Less than 25 copies so the test cannot find any viruses. It doesn't mean you have 0, only that there are so few copies that the test can't detect them.
Once the treatment is finished, the few little buggers left, if any, will start multiplying rapidly and 12 weeks later you'll be close to where you were before the treatment! Actually, most of the time after 4 weeks you'll already know if you are relapsing because you'll have more than 25 and they will get 'detected'.
Finally, being detected at the end of the treatment doesn't mean it didn't work but it usually doesn't look good because if you could not get rid of them during 8 weeks of treatment, chances are that the remaining ones will not die before the last sliver of medication continue to circulate in your blood stream.
This is why I feel we should try to get as many weeks of treatment as possible. A 24 weeks treatment will cure close to 100% of patients... I understand they can't have everyone on 24 weeks because the vast majority would be overmedicated but for the ones who relapse, it is devastating.
I would prefer to be tested 2 weeks before the end of treatment and if detected, have 4-8 weeks of additional treatment. Even if not covered by the insurance company, an out of pocket expense of 5-10-15 thousands might be the best investment available at that point in time (Gilead would probably help you a lot in a case like this).
I'm 1a F4  8 millions copies and was fortunate to get 24 weeks (I am 17 week into it). After 12 weeks I would have bet it wouldn't be enough (personal feelings and knowledge of my body). My 'cure' will probably happen in the extra weeks above 12. I was UND after 4 weeks by the way but I don't trust that because I was UND twice before on Inf-riba...
Title: Re: Harvoni Side effects
Post by: DLedin on March 11, 2015, 04:04:08 pm
Quote
I see my doctor tomorrow, but emailed Gilead and they called me today.  They explained the same to me as what they told Paul.  To summarize it to the best of my ability, the gentleman said the trial blood work sensitivity was, less than 25 IU/mL.  There isn't a test that goes down to Zero.  The sensitivity has improved since then where my test level is now less than 12 and it depends on who is doing your test.  The recommendation is to see if replication has occurred at 12 weeks post treatment.  At that time if it comes back below the test sensitivity, they consider the treatment a success, and having another test at 24 weeks is a good idea.
@Katie, I'm far from being an expert regarding the tests for viral load. When I got my mid-treatment test results, which were "not detected", I took a look at the paperwork regarding the test that was requested. I noted that my doctor had requested an HVC RNA Quantitation (PCR) test. I wanted to know more specifically what that test was about so I googled it and came up with this from a website called hcvadvocate.com:

http://www.hcvadvocate.org/hepatitis/factsheets_pdf/viralload.pdf

Don't know that it will answer your questions but it did explain some of the differences in various types of viral load tests.

-Doug

Title: Re: Harvoni Side effects
Post by: Islandgirl on March 11, 2015, 07:59:18 pm
Thanks for the link, Doug,  Katie and I are on the same 12 wk EOT track though my doc's test dates are different (last pill was 2/25).  I'm stressing a bit to during our "long wait" and can't help feeling somewhat anxious - just don't feel as good as I think I should by now.  Trying to be positive though, like my warrior role model, Katie :)

@Katie, I'm sending you lots of beautiful swirling colorful positive,  healing energy for tomorrow's doc visit - and always.  A big hug too.  I'm hoping your doc has some good news for  you tomorrow and a better explanation of what's going on and what can be expected. 

Thanks everyone, for your posts of sharing experiences and thoughts, and for your support.  Hugs,  ...Islandgirl
Title: Re: Harvoni Side effects
Post by: Katie on March 11, 2015, 08:17:37 pm
People getting UND after 4-6 weeks mean that they have Less than 25 copies so the test cannot find any viruses. It doesn't mean you have 0, only that there are so few copies that the test can't detect them.

That's how I see it too Mario, only my test didn't SAY UD; it said detected, so I am hoping it is just the verbage of the lab I deal with, and mine was actually < 12 IU/mL  (copies are different)  It sure would be nice if the labs were all consistent as I think that is where my confusion comes in.  I am very exact and need specifics.

Thanks Doug, and your site explains the copies VS IU/mL.  I pretty much understood the different types of tests from all the reading and research I have done.

Hang in there Island Girl!  We are in this together and we will make it.  Instead of cleaning and organizing today, like I should, I am shopping on line for my new bedroom.  So far new sheets, new bedspread, new skirt, and now new blinds.  Too bad we aren't closer (and Nicole too) as we could have a slumber party!  HA!  Hopefully my carpenter will show up Sunday so I can get on with the drudgery of cleaning and moving stuff.  Oh...and throwing & donating STUFF.  I have WAY too much!

Have a good evening everyone.

Katie
Title: Re: Harvoni Side effects
Post by: MEG on March 11, 2015, 08:23:24 pm
@Katie, good luck tomorrow and I hope your doctor is able to sort this out for you.

Shopping online to dress up your room....what fun!

Hi @Islandgirl. I was thinking about you today. It's great to "see" you...

Hugs everyone. Keep fighting the good fight.
Title: Re: Harvoni Side effects
Post by: Alfredo on March 11, 2015, 09:54:34 pm
I read in a previous post that Harvoni may create resistance. I was told by my Hepatologist and Gilead  that Harvoni does not create resistance and that if you fail treatment you may treat again. I was also told that if you treated before with  Sovaldi and failed you may treat with Harvoni since Sovaldi does not create resistance either. Like to know if anyone has any website address or literature  that mentions this. 
Title: Re: Harvoni Side effects
Post by: Katie on March 11, 2015, 10:13:20 pm
Hi Alfredo,  I talked to Gilead today and we discussed resistance.  They really haven't much information on that since Harvoni is so new.  Of course they also told me that they haven't any guidelines on treatment for those who have relapsed after the 12 week post treatment.  It could be not enough data is available at this time and it also could be more information is given to the doctors than the patients they speak with.

I emailed them questions regarding a bunch of unanswered issues that I have and some that have come up on this forum and they sent their web site info which I have already gone over.  So, I replied and said I would think after paying over $90,000 they would have some kind of back up plan for those who weren't successful.  That must have gotten their attention as I received a phone call this morning.  I hadn't even had my coffee so I wish they had called just a bit later!  HA!

Most of my questions are still unanswered because we are really the first group that are on the treatment, however he did say some of my questions were very good.  Maybe they will look into some of those better.

I did talk to him about diet and he said they have no restrictions on food.  He didn't say anything about fat, or fruit or sugar, but it just makes sense to eat as healthy as possible.  He just stated with the tests, it could be taken with or without food and without restrictions.

So do I know more than I did.  Not really!  HA!

katie
Title: Re: Harvoni Side effects
Post by: Keanu2015 on March 12, 2015, 08:14:26 am
Good morning everyone! Day 21!

         I actually noticed my liver during one roll over as I slept last night but generally speaking, it seems to have disappeared from the forefront of my mind lately. The pain is almost completely gone. I wake up tired some mornings but nothing like I did before Harvoni. The backs of my eyes are burning way less. I seem to be less tired for the most part also. I definitely need 8 hours sleep and if I don't get it I drag later in the day but thats much better than needing 12 just to exist before the meds!

I am thankful for the last couple of posts. Katie and Alfredo I'm glad you are doing some digging and sharing the info with us. The "viral load copies" seems a bit confusing to me but thank you Doug, Mario and everyone else who is sharing on that as well. Hope everyone is doing well today!
Title: Re: Harvoni Side effects
Post by: TTSP on March 12, 2015, 11:33:35 am
@Doug Thanks for sharing this information! This is what I have been waiting for something from someone who has completed their course. If Gilead tried to prescribe everyone to 24 weeks automatically the insurance companies would never go for it. They want results first.

I have been reluctant to talk testing here, but I've must say I like your idea of getting extensive testing shortly before my 12 week course. not afterwards. Just my opinion and my doctor, who I have complete confidence in, he has spent a great deal of time answering all of my questions.
This is mine and my doctor's opinion,it seems pointless to do excessive testing early. I am basing this on thought on my wife's and other people I know who have gone through this with other treatments. My doctor also says this. Harvoni is not Interferon, so I'm not concerned about the problems associated with past treatments.

@meg You are correct there is no information from Gilead about food. Pharmaceutical companies would not be concerned about anything that did not interfere with the chemical properties of Harvoni. That being said, anything that gets ingested whether it be through mouth, nose, or skin will pass through the liver. The whole idea behind a lot of the info about food is to do what you can to slow down the process of cirrhosis. Like you said it makes sense to eat healthy.  :)

I have a question for anyone: Any suggestions on which antacid to use? I know that they should not be taken 4 hours before or 4 hours after Harvoni. I'm just wondering if any are safer or more effective. (This kind of question is where my doctor gets impatient with me) LOL In the past I used Tagamet. I would appreciate your thoughts on this.  :)

Best wishes to everyone!  8)

Title: Re: Harvoni Side effects
Post by: TTSP on March 12, 2015, 11:43:25 am
Oops, not Tagamet, Zantac.  :-[
Title: Re: Harvoni Side effects
Post by: TTSP on March 12, 2015, 12:18:50 pm
Nevermind on the Zantac, I forgot it lasts for 12 hours! That doesn't seem safe.
Title: Re: Harvoni Side effects
Post by: MEG on March 12, 2015, 02:17:07 pm
@TTSP

About antacids. I know that with the Prilosec, taking 20mg(not 40mg) when you're taking the Harvoni is Ok. ....It seems counterintuitive. But because it's long acting and taken once a day, that it's anti-acid activity is at its lowest at the 24 hour point after it was last taken. That's why they have you take it together.

About the Zantac? I'd ask your doctor since you trust him. Not sure how he would want to manage that.

Tums/Rolaids, minimum of 4 hours before or after Harvoni.

Again, these are instructions I've received(I don't take these meds) when they did the med review upon starting Harvoni.

Which is to say, that you can take them, if absolutely necessary, but they need to be spaced out and talk to your doctor about all this...

Have you tried things like ginger tea? It helps me with the occasional upset stomach.
Title: Re: Harvoni Side effects
Post by: Bituman on March 12, 2015, 03:22:57 pm

It seemed like "The Dragon" was trying to hold me back. Against my instinct I forced myself out there, and the first mile was tough. I wanted to turn back, and I was already exhausted. But then it got better! My headache faded and I was able to finish my 3 miles. By mile 3, I was feeling normal. I was still a little slower in my pace, but I had new found energy and my headache and brain fog were gone.

If you're one who exercises, try and move a little. Take it slow if you need to, but I think that'll help. Don't give the dragon that much power. You're beating the dragon with the wonder drug and also keeping your body healthy. Celebrate it! Just my .02

BG

Good advice BG.  I ran quite a few half maras too.  Although I didn't know it at the time, I did all that with an active HCV infection.  Always liked that distance because it wasn't as life consuming as a full mara, and quicker recovery.  It was my favorite distance when I was running.  Eventually I had to give up running due to an arthritic knee, so now I get my cardio fix from cycling.  Harvoni has not affected my training or ability whatsoever.  But because I'm almost 60, I do go through spells like you described when I feel a little tired and it's difficult to drag my butt out the door.   Usually I can associate those with too little sleep, eating too much junk, stress at work, etc. What I have learned is that if I can just get outside and moving, I'll feel better soon, just like your 3-miler experience.  Those spells seem short lived and I can usually push thru them. Check out Isaiah 40:31...

Good luck and good health with your training. 

Bob
Title: Re: Harvoni Side effects
Post by: TTSP on March 12, 2015, 03:28:29 pm
@Meg Thank you My doctor was pretty vague on the antacids. I'll try again.
 I think too much, it's easy to do when you have to juggle multiple illnesses.  ;D

Best wishes to you! 8)
Title: Re: Harvoni Side effects
Post by: pumpkin50 on March 12, 2015, 04:24:04 pm
Hello everyone!  i am new to the forum even though I have been reading it for the past 2 weeks however I wanted to wait until I was approved and picked up my Harvoni before signing up and joining.. About me.. I am Genotype 1a with a VL of 298,000 and a stage 0-1 and I have had this virus for 36 year and I have never been treated before and I will be on the 8 week treatment plan
.  My baseline is constant fatigue and brain fog since I can remember however there are some good days..   and only can work 10-12 days a month due to the fatigue.  My boyfriend of 7 years also has Hep C which he believes he has had for at least 35 years. We are going to be treated together as we see the same doctor and  we have our meds sitting on the dresser and can't start until next week as he had a preplanned surgery for kidney stones so they want us to start after the procedure!!  I can't express how it feels to have a potential cure in my hands and have to wait until next week to start..,Ugh!!!! I will check in next week when we start and also I would like to say thank you for all the great tips I had gotten from reading your posts the last couple weeks!!
Title: Re: Harvoni Side effects
Post by: MEG on March 12, 2015, 05:15:43 pm
@TTSP

You're welcome..It sure is easy to overthink when you have multiple issues. If you feel comfortable, the nurse in me would like to know  more---so that I don't steer you in the wrong direction if you ask for advice again...

Hope you're day is going well.......
Title: Re: Harvoni Side effects
Post by: visoianu on March 12, 2015, 11:43:04 pm
I finished 12 weeks of Harvoni in December. I posted before all the sides efects I have had, but I did not realize at that time that the tooth infection I got 8 weeks into Harvoni was also a side effect. I read that 5% of subjects in the reserach group had this type of infection. 
Title: Re: Harvoni Side effects
Post by: mario555 on March 13, 2015, 05:35:53 am
Funny! I did get a toothache which resulted in a canal treatment which didn't bring relief! I started suspecting it was a side effect in the week following. Watch out people...
Title: Re: Harvoni Side effects
Post by: hayliegirl on March 13, 2015, 12:58:20 pm
Hello my name is Haylie.  I began taking Harvoni March 7th 2015.  I was really excited when I was told that Harvoni has hardly any side effects..   When I first took the pill, I didn't experience any side effects, I was more then willing to go for round 2.  Round 2 was mild side effects that I can live with for sure.  By day 3+ I'm thinking..... THIS IS TOUGH. I hear that the 3 month marker I will be experiencing no side effects.  I just want to hear from people who are actually taking the drug, not from people that have heard about the drug....!!!
Title: Re: Harvoni Side effects
Post by: Karen1124 on March 13, 2015, 01:52:06 pm
Hi Haylie girl,
I have been on Harvoni since Feb 5th. I have not taken any other treatment before this, the only side effects I have had is cold hands and feet. What do you mean by tough? make sure that you drink lots of water and eat well. Keep the sugar low in sodium low and you should be good to go! I think I'm lucky that I didn't have a lot of side effects becaused some people do! But hang in there because in four weeks I was undetected it's unbelievable! Hope you feel better! Life is Good!!!!......Karen
Title: Re: Harvoni Side effects
Post by: hayliegirl on March 13, 2015, 02:20:33 pm
Hi Karen, and thank you for speaking to me.  I have a terrible pain in my right side, my insides feel like they are boiling.  I feel heat rushing through my body, yet my skin is cold.  I have the worst headache in the mornings. So bad its hard to open my eyes.  I am very thirsty and thanks to you, I will be drinking lots of water:)
Title: Re: Harvoni Side effects
Post by: SIXFOOTFOUR on March 13, 2015, 02:35:17 pm
hayliegirl

Im no expert only on my first week of tx, but have found as others have said drink plenty of water, tylenol or Ibprofen for headaches, Im better if I eat a little when I take it.

For me I take it in the early Pm and then sleep so by am IM almost 12hr post dose and I've experienced almost no bad effects. We are all different but stick to it. I also noticed that with each day the side effects are less for me.

Good Luck
Title: Re: Harvoni Side effects
Post by: Katie on March 13, 2015, 02:35:28 pm
Haylie..Are you running a fever?  If so and if it persists, I would call your doctor.  Hopefully you will get through this and everything will settle down and yes, water definitely helps.  Try to drink half a gallon a day.  I actually kept track of how much I was drinking until I adjusted as I was poor at that in the past.

Good luck to you!

Katie
Title: Re: Harvoni Side effects
Post by: Karen1124 on March 13, 2015, 03:20:21 pm
Hi haylie girl,
Take you temp and I would call the doctor. Your doctor will tell you what you should take for the headaches! My pharmacy is CVS and the have a phone number for assistance with side effects. Let us know what they say and how you are doing! Guzzle that water! God bless you haylie girl...... Karen
Title: Re: Harvoni Side effects
Post by: dragonslayer on March 13, 2015, 03:21:48 pm
Hi Alfredo,  I talked to Gilead today and we discussed resistance.  They really haven't much information on that since Harvoni is so new.  Of course they also told me that they haven't any guidelines on treatment for those who have relapsed after the 12 week post treatment.  It could be not enough data is available at this time and it also could be more information is given to the doctors than the patients they speak with.

I emailed them questions regarding a bunch of unanswered issues that I have and some that have come up on this forum and they sent their web site info which I have already gone over.  So, I replied and said I would think after paying over $90,000 they would have some kind of back up plan for those who weren't successful.  That must have gotten their attention as I received a phone call this morning.  I hadn't even had my coffee so I wish they had called just a bit later!  HA!

Most of my questions are still unanswered because we are really the first group that are on the treatment, however he did say some of my questions were very good.  Maybe they will look into some of those better.

I did talk to him about diet and he said they have no restrictions on food.  He didn't say anything about fat, or fruit or sugar, but it just makes sense to eat as healthy as possible.  He just stated with the tests, it could be taken with or without food and without restrictions.

So do I know more than I did.  Not really!  HA!

katie

Regarding retreating, Ive posted elsewhere that Gilead will be doing clinical trials to determine what is the best treatment path for those who are partial responders or relapsers on Harvoni.  Id have a hard time believing that, until results from these trials are eventually published, Insurers would simply fork over another small fortune to cover retreatments without the requisite data showing the efficacy.   At this point, nobody knows what will be the best retreatment option for Harvoni failures.. Perhaps  Viekira Pak will be a more effective plan... Or Harvoni for 4 more weeks than initially given.. Maybe 8 more wks than initially given... Maybe riba needs to be added.. Or not..

Far too many questions remain to simply assume that retreatment with the same drug which failed the first time should be reapplied, and for what duration,  until there's some good actual data to back it up.
Title: Re: Harvoni Side effects
Post by: Karen1124 on March 13, 2015, 03:25:39 pm
Haylie girl I am drinking half my body weight in water so if you weight 150 that 75 oz of water per day...Karen
Title: Re: Harvoni Side effects
Post by: SunIsOut on March 13, 2015, 07:37:38 pm
Day 18 today.

I have been having the cold feet and did not relate it as a side effect but with two pair of socks and my slippers I guess it is a side effect.  I still have the Tinnitus and was/am hoping this will subside sometime during or after treatment. I sleep a lot and my vision and clear headedness is not where I would like it but in the grand scheme of things I can cope.

Interesting posts this week with the test types, changing your toothbrush/ razors and other forum experiences. Let's keep it up!

My pharmacy called to see about side effects and I like that they are proactive this way.  It is a certain wait and see on the duration as my doctors wanted 24 weeks and insurance said twelve.  It is alarming that the viral load can build right back up in no time like that.  I will see if they will use that as part of their justification for 24 weeks after some testing occurs.

Have a good weekend folks.
Title: Re: Harvoni Side effects
Post by: Katie on March 13, 2015, 07:59:39 pm
I posted this on the thread FINSIHED 12 WEEKS OF HARVONI, but thought some of you might be interested in this as well. Just me running some stuff through my head the way I do.  Hope it isn't confusing, if so just ignore. 
++++++++++++++++++++++++++
One thing I have noticed is the difference in sensitivity with different labs and the tests they use.  The trials were <25 IU/mL for LOQ (Level of Quantified) but I don't now what the LOD (Level of Detection) was.  I have just submitted that question to them.  It was posted on here for a test of <15 LOQ and the LOD was 11-14 so that makes me interested as a 0-10 would be an Undetected result.  My lab did not specify LOD and is something I need to ask about (LOQ = <12).  I tried to research it last night and couldn't find it however did see where they referenced the LOD but not actual number.

In my mind, it seems the trials LOD would be higher due to the sensitivity and using that method for the trials may have given me an undetected result.  It really doesn't matter as it is what it is I just like putting things in proper perspective so it makes sense to me.

Anywho...That's enough of that and I'll let it go.  It's just I like those type of details so I can process how they come up with these things.  I read a lot last night and how they figured out the range levels.  They actually took blood samples from those infected with Hep C and diluted their blood to see at what levels it would show up.  I found that interesting.  I know....I'm weird that way.

Congratulations to all who are moving forward and I wish you a healthy, productive loving life!  I will be right behind you!

Katie
Title: Re: Harvoni Side effects
Post by: Wilson on March 13, 2015, 11:53:07 pm
Good evening all, Wilson here! Took my last pill last night. I feel a sense of relief. Cleared a month ago.  My doctors said "see you in 120 days". I feel good about the whole thing. I thought I was to do twelve weeks, but my doc said no need.  The trails showed that healthy never treated, no fibrosis, cure of 97% with eight weeks. 96% with 12 weeks. My hemochromitosis (iron overload) is virtually cured as well. I am processing iron normally. That's awesome. No blood draws every 4 or 5 weeks.  Well, I thank all for the great reading and the comforting thoughts. I expect that I'll check back once in a while. I plan on not caring any more!  In  3 monthes I can be an organ donor again.  (Wow)!!!  When we are clear and we only have the HepC antibody. I'm good to go.
Title: Re: Harvoni Side effects
Post by: mario555 on March 14, 2015, 08:23:48 am
Wilson. Congrats for finishing your treatment. It must be a wonderful feeling to start forgetting every bad moment related to this awful disease. Happy to hear about the iron overload situation going away.
Title: Re: Harvoni Side effects
Post by: coloradogirl on March 14, 2015, 09:14:28 am

Papa, before they started me on Harvoni I had to get a marijuana and alcohol test and be negative in order to start. And they will test periodically. I'm in Los Angeles on Kaiser. I'm sure different insurers have different standards, but as my doctor told me, they want to make sure they arent handing over $1200 pills to people that are intoxicated and might not adhere to proper regimen.

I have KP, and I did not have to get tested before starting treatment. It could have been your doc that decised to test you first.

My doc left it up to me, but said that he had read a report on marijuana and the negative affects of its use while on treatment. The only study I can find is from the University of Washington. I will probably post a new topic after further research because of conflicting reports. I am not taking any chances while on treatment, but since other patients feel the need to use, it is an important topic.
Title: Re: Harvoni Side effects
Post by: hepcondor on March 14, 2015, 10:53:17 am
5 Weeks!!!  18 mil to 0  I can't believe it! Thank you Harvoni!!

On the other side I have major ringing in my ears, body aches all over, weakness, disoriented...I know it's worth it and I just need to hang in there but I sure would like a couple of days off of this stuff. But I'm not going to!
Title: Re: Harvoni Side effects
Post by: SunIsOut on March 14, 2015, 11:35:42 am
I learn something everyday here!

Wilson, I did not have Hemochromatosis as it is a genetic thing but I did have elevated iron up to 1800 and had to have Phlebotomy to bring it down and still have to have it monitored.  I had no idea that it was related to this!  Before treatments I was up around 500 and my blood platelets were 49 as my spleen is enlarged and sucking up all the platelets.  I have my 4 week labs soon and will ask that they test all of this.

Hepcondor, Tinnitus has been intense for me prior to treatment and because this is a blood disease I am hoping that the vessels in my ears are being affected.  Real big on the hope and very little on data.

Okay day 19 is underway!
Title: Re: Harvoni Side effects
Post by: nadewitt on March 14, 2015, 12:44:52 pm
 My tinnitus has gotten worse while I am on Harvoni but since it started during my first treatment with interferon and ribaviron and has never gone away in the 4 year since, I am not holding out any hope for it to stop. Sometimes it feels like it is going to drive me crazy especially now that I have 2 levels at the same time instead of one. If anyone knows how to stop this, I would appreciate any advice.
Title: Re: Harvoni Side effects
Post by: hepcondor on March 14, 2015, 01:13:45 pm
Very sorry Nadewitt!!!  I didn't have it before treatment.
Mine gets so loud sometimes I have a hard time hearing other people.

And it is driving me crazy!!
Title: Re: Harvoni Side effects
Post by: Katie on March 14, 2015, 01:38:49 pm
Congratulations Wilson and Hepcondor!!!.  Hope you continue to be free and enjoy a wonderful, healthy life!  Take good care of yourself and continue to heal.

I have had tinnitus for the past 10 years and it started with a year long sinus infection and led to my HepC diagnosis.  The first few days of taking Harvoni, the static noise increased 10 fold.  It reminded me of an old TV when it went off network.  Horrible!  Then it stopped and I had perfect silence for 2 days.  It was amazing and beautiful to be free of that constant buzzing but unfortunately it came back to the pre-treatment level and has remained.  :-[  So is it related to Hep C?  May be however in my case I think I am stuck with it.  Then again, I am not totally clear of the virus so that is another thing to look for as more of us are off the medication.  It is really annoying and I truly miss the silence, especially when I am in the woods, or out on a boat.  I love the Sound of Silence.

Katie
Title: Re: Harvoni Side effects
Post by: coloradogirl on March 14, 2015, 03:11:37 pm

One thing I have noticed is the difference in sensitivity with different labs and the tests they use.  The trials were <25 IU/mL for LOQ (Level of Quantified) but I don't now what the LOD (Level of Detection) was.  I have just submitted that question to them.  It was posted on here for a test of <15 LOQ and the LOD was 11-14 so that makes me interested as a 0-10 would be an Undetected result.  My lab did not specify LOD and is something I need to ask about (LOQ = <12).  I tried to research it last night and couldn't find it however did see where they referenced the LOD but not actual number.

In my mind, it seems the trials LOD would be higher due to the sensitivity and using that method for the trials may have given me an undetected result.  It really doesn't matter as it is what it is I just like putting things in proper perspective so it makes sense to me.


My doctor ordered the Nucleic Acid Direct Probe. It is the HCV-RNA by RT-PCR, reflex to TMA. He said make sure the lab doesn't use the less sensitive bDNA assay. 
Title: Re: Harvoni Side effects
Post by: mario555 on March 14, 2015, 04:09:05 pm
Tinnitus. I have had a low level that is on and off and is at a level of 1-2 once or twice a year. Since I have started Harvoni, it has gone to a level of 5-9 and as mentioned above, sounds like a TV when you are between chanel. After 8 weeks of treatment, it abated and sometimes stopped. Unfortunately, it started again after 12 weeks and all my side effects came back also. I am now into week 18 and the going is rather demanding.
I think it is related to my new case of high blood pressure which is also a side effect for me.!
So,for the ones on 12 weeks treatment, don't despair, it does come down. When the "buzz" gets too loud you should try to relax rapidly through respiration and by sitting down. I have found it usually follows my hyper-activity and stress.
Title: Re: Harvoni Side effects
Post by: TTSP on March 14, 2015, 04:52:00 pm
What mario said.  8)
Title: Re: Harvoni Side effects
Post by: hepcondor on March 14, 2015, 05:40:26 pm
I am with you there on the high blood pressure too. Mine has gone up a good 20%.
Surely this should be listed as a side effect when there a quite a few of us on here with this issue. My tinnitus was almost gone weeks 3 and 4 and came back with a vengeance this last week 5.
But I got my all clear this week.
Have you been cleared yet Mario? Why are you doing more than 12 weeks?
Title: Re: Harvoni Side effects
Post by: mario555 on March 14, 2015, 06:51:19 pm
I was UND after 4 weeks. I am doing 24 weeks because of my borderline status which is F4, 8 millions copies and 2 failed attempts with Inf-riba but I never was able to go above 24 of treatment. My insurance didn't care about which prescription I take and I have a $50, 000 per year allocation  I used up all my 2014 and 2015 allocation. The remainder was partially paid by Gilead and the rest by me.
In Canada, the pills sell for $950 each.
Title: Re: Harvoni Side effects
Post by: Wilson on March 14, 2015, 07:07:16 pm
I read the comments about using pot. I disagree with your doctor. My Doc did both phase I and II trials. 2000 patients. I specifically talked and ask about pot. Medical marijuana. SHe clearly said there is no evidence that marihuana had any effect on treatment with Harvoni. She had no issues. I included it on my medication list and she approved  it As ok for  use.
Title: Re: Harvoni Side effects
Post by: TTSP on March 14, 2015, 09:05:19 pm
I have had severe tinnitus, mouth sores, and tooth aches of and on for a couple of years. 3 Otolaringogists ? said I have Meniere's. Of course they have no idea what causes it so there is no cure. After reading up on it I found out a low sodium diet may help. I was also given Triamterene HTCZ. What that does is flush sodium out of the system and a result my blood pressure went down to normal. It has now creeped back up to borderline 140 over 88. The Oto's don't understand this and aren't interested in learning anything about Hep C. Like I have said before, I am speculating on this theory. I'm not a doctor. I just wanted to support you guys dealing with these symptoms. Hang in there. I haven't been able to hear much for quite some time. Even now it is bad when I wake up, it will subside a little for a few hours, and then start increasing again by 7 or 8 pm it gets to the point I just lay in the dark in quite until I finally fall asleep. Maybe someone, nurse, Gileaad, or your doctor may be willing to consider this? Hope this was helpful.

Peace.
Title: Re: Harvoni Side effects
Post by: rmrdave2005 on March 15, 2015, 04:01:15 pm
well I been on harvoni 4wks violent headaches right off the bat.then my temper went through the roof I had a small one b 4 but this is unreal no patience what so ever feel sick,tired, super hungry when I get the urge had to start taking diabetic pills when I had not for 3 years I controlled it through diet and exercise
Title: Re: Harvoni Side effects
Post by: mario555 on March 15, 2015, 04:49:52 pm
Rmrdave. Everything you described happened to many of us so try not to worry too much. You're getting rid of the disease! The side effects seem to quiet down as the weeks go by. Even the terrible hunger will die down. Use the opportunity to try to eat better and go for long walks. That way you won't pass your bad mood on your family (I'm talking from experience..) Good luck and come back to the forum if needed, we've all gone through this!
Title: Re: Harvoni Side effects
Post by: Keanu2015 on March 16, 2015, 07:02:41 pm
Hi Everyone!

   Day 25 and doing well! Not much to report in the way of new or unusual side effects. For me it was always the most common ones headache and sleepiness. They were worse at the very beginning. Trying to maintain a good diet (Low A and Iron Included in everyday total) and regular intervals of exercise. Lots of water. Can't let the dead cells accumulate in my blood stream. I believe that causes me headaches now. I'e. I had a headache a couple of days ago. instead of taking drugs and lying down, I got on the treadmill for 30 mins anyway and it went away as my breathing got heavier and sweat poured out. It didn't come back for 2 days. It stays gone if I keep drinking water and exercising. I'm learning how to work with the Harvoni to keep my symptoms away. I'm sorry many of you are suffering from this tinnitus (it sounds horrible) and other bad side effects. However I must implore you to stay in the fight and don't give up! I have something strange going on myself for quite awhile but I think unrelated. I hear a low frequency vibration mostly at night. No one else seems to hear it. It sounds like a magneto from a monster windmill spinning in the earth from miles away. That's a weird description but I have no answers. Anyway.. to my friends in battle, I must return to my boys. I must bid you farewell for now. I hope you are all doing well today! ~ K
Title: Re: Harvoni Side effects
Post by: Kathy C on March 16, 2015, 08:31:35 pm
Tomorrow will be 4 weeks since I started Harvoni.
The last time I posted I had only been on Harvoni for 6 days.
Everyday I have headaches, mild.
Today I went to the walk-in because I have an sinus infection, now tonight I have a lot of congestion in my head, and a headache all day. The Dr told me that I had an upper respiratory infection but she thought it was viral so she gave me no medication at all, she said if I wasn't better in a couple of days for me to go see my Dr or come back there.
Tomorrow I have my first lab work, I am anxious to get the results.
This is my 3rd time around with a hep-c treatment, they said the third time is the charmer. Bless each and everyone of you doing a treatment and also for your Dr.
Title: Re: Harvoni Side effects
Post by: Katie on March 16, 2015, 09:02:00 pm
Hi Keanu,  Glad you are doing well!  Go Forward & Conquer!

As for your motor humming sound...I would pay attention to that and maybe have your blood pressure checked.  I recall hearing about that type of sound coming from the circulatory system and associated with blood pressure.  I may be way off base, but tinnitus is a completely different sound that that, from my experience.

You are doing fantastic and will beat this thing!

Hi Kathy, I am sorry your are experiencing headaches.  Sinus infections are horrible so try and nip it in the bud or it can be a real problem. Meg has been fighting one since October and a few years back I had one for a year, taking antibiotics on and off and it caused me ALL sorts of problems, health wise.  I finally found out I was very low with vitamin D (13) and once I supplemented it, I have been doing really well, rarely getting the flu or colds.  You might check your level, if you aren't sure about that.

Good luck with your blood work and hope it comes back with good results, showing you are a strong responder!


I have been feeling terrific and found new information on low viral loads at end of treatment where each and everyone of them cleared with the SVR 12, so I am still hopeful. (see the research thread posted by dragonslayer)) I feel too good to still be sick, but I have to wait another 3 weeks for my next blood work for verification. EOT VL = < 12 but still detected (2/27/15)

Take care everyone and have a great day,

Katie 
Title: Re: Harvoni Side effects
Post by: nadewitt on March 17, 2015, 05:45:40 pm
4 week lab results

Platelets   117 (normal 150-450)
AST-SGOT   51 (normal 0-32)
ALT-SGPT    67 (normal 10-35)
HCV viral load   NOT DETECTED!!!!!!

I am so happy I had to share!
Title: Re: Harvoni Side effects
Post by: HHburme on March 17, 2015, 05:54:46 pm
EOT Results !!

Hepatitis C RNA (PCR) IUs/ml
Result
Jul 01, 2014
30,000,000 IU/ml
Jan 12, 2015
<15 IU/mL
Mar 13, 2015
<15 IU/mL

Mar 13, 2015
Hepatitis C Interpretation
Not Detected
Title: Re: Harvoni Side effects
Post by: HHburme on March 17, 2015, 05:59:11 pm
Mar 13, 2015
Aspartate Amino Transf (AST/SGOT)
23 U/L

Mar 13, 2015
Alanine Aminotransferase (ALT/SGPT)
29 U/L

Yippee !!!!!

Fight the Good Fight !!

John
Title: Re: Harvoni Side effects
Post by: HHburme on March 17, 2015, 06:00:24 pm
Nadewit...Congratulations !!!!!!!     
Title: Re: Harvoni Side effects
Post by: nadewitt on March 17, 2015, 06:12:33 pm
And congratulations to you HHBURME! Great results! When do you go for your next labs to make sure it stays gone?
Title: Re: Harvoni Side effects
Post by: HHburme on March 17, 2015, 06:18:21 pm
12 weeks and if still UND then I'll be SVR12 .....basically cured.

Fight the Good Fight !!

John
Title: Re: Harvoni Side effects
Post by: Karen1124 on March 17, 2015, 06:19:28 pm
Congrats to Nadwitt and HHburme congrats to both of you!! Got mine on march 5, whoooooo!! Feels wonderful!! Have a great Day!!
Life is Good!!  Karen
Title: Re: Harvoni Side effects
Post by: SunIsOut on March 17, 2015, 09:13:46 pm
4 week lab results

Platelets   117 (normal 150-450)
AST-SGOT   51 (normal 0-32)
ALT-SGPT    67 (normal 10-35)
HCV viral load   NOT DETECTED!!!!!!

I am so happy I had to share!

Hi my platelets were 49 at beginning of treatment.  What were yours?  Congratulations everyone and thanks for sharing the results.  I go for week 4 labs next Tuesday!
Title: Re: Harvoni Side effects
Post by: Keanu2015 on March 17, 2015, 09:22:02 pm
Hi All!
 Day 26! I picked up my 2nd bottle today. I'm trying to get a 4 week VL test on Thursday (my 4 week mark). I put a message in with doc office today...waiting for a response. Should I be asking for an HCV RNA Quantitative or Qualitative? I read up on it a bit. Good arguments for both considering both the phase of treatment I'm in and also how dramatically my enzyme levels decreased at 2 weeks. Can I get a few chime ins on this topic? It almost seems like my Dr is granting me exactly the tests I want. He gave me precisely the labs I asked for at two weeks. Alt, Ast, D and platelets- Nothing more or less.. I didn't even see him. the secretary gave me a script for the lab. It's a bit discomforting but I'm watching you all here and handling my business.

    Congrats to all you undetected folks popping up here today! Glad to hear it!
Karen, John and Nadewit - Absolutely awesome!

Hi Katie! thx for the advice. I've been monitoring my blood pressure. It's been very good actually, although tonight I'm 128/81! High normal/low pre hypertension. Glad you suggested it. First time I was ever that high in my life!.. I'm going after my sodium and wheat. Iksnay on the hombre I guess.
About that sound I described... It actually comes and goes. Sometimes it's gone for months. I think there's "personal" industry around here perhaps that I"m unaware of. Maybe some fracking from a silo? Who knows. I'm very close to the Marcellus shale line but we are supposed to be in a prohibitive area. Lots of country and miles of uninhabited areas so who knows really. I have a feeling that if I went snooping around I may end up in a body bag! lol
Katie I feel that you are cured and any discomfort you're feeling may just be your liver rebuilding itself :) I'm praying for you.

Hope everyone is well tonight.
Title: Re: Harvoni Side effects
Post by: Katie on March 17, 2015, 09:30:12 pm
Hey Keanu,  I'd go with Quantitative as it gives you the measurement of your VL.  the other one just says detected or undetected although I believe the Qualitative may be slightly more sensitive.  I prefer seeing the actual number if I am in fact detected.  Just my personal opinion.

I just received a call from Gilead in regards to a question I posed to them on the Level of Detection (LOD) for their trial tests of <25 IU/mL.  LOD for the trials was 9 IU/mL.  This means those undetected could have had a VL of 1-8.  I now need to see what the LOD is for the test my lab ran for comparison.  The gal I spoke with agreed with the results of the small test results that Dragonslayer posted (on Hep C Research News & Studies) where those showing low levels at the end of treatment can clear it post treatment.

She was also interested in my side effects from the treatment as she does report anything experienced by us and later after it is analyzed will be available in a report. So it would be good for everyone to report your side effects.  The more data they have the more complete their analysis will be.

I am feeling good, and sleeping like a baby 20 days post treatment, so I feel very hopeful I am clear and cured and I got my remodel done TODAY!  Now my work really begins cleaning & getting things organized, thrown out and donated.  It's going to take Spring Housecleaning to a who new level!   :D

Katie
Title: Re: Harvoni Side effects
Post by: Keanu2015 on March 17, 2015, 09:54:55 pm
Hi Katie!

    I think I'm going with quantitative then! You nudged me over the edge! lol. My indecision was over the fact that since my enzymes dropped to normal so dramatically by 2 weeks, that perhaps the more sensitive test would show UD by now? Anyway, I'll have to agree with you. That gamble may be a bit presumptuous considering they do have me on 12 weeks of treatment for a reason. My VL was 3.900,000 pre-treatment. Not the worst by far but I do have cirrhosis, so Harvoni may still be digging some of those little bastards out of their murdered tissue nests.
Thanks for the results of your never ending quest to find answers! It seems to be a bit more clear than what I understood previously. Glad you completed your remodel but even more so that YOU are feeling Good! Great news! I'll be sure to give them my treatment assessment- thanks!
Good luck on Tuesday Sun is out! We're pretty close together. Have a great night everyone! ~K
Title: Re: Harvoni Side effects
Post by: nadewitt on March 17, 2015, 10:13:12 pm
My platelet level before treatment was 109.

 I read something interesting today about one of the trials. A large percent of the participants suffered nasal congestion. Since I have been on treatment my nasal congestion has been pretty bad but since I have lots of allergies (trees, weeds, grasses, dust, mold etc) I just thought it was my allergies. My doctor suggested I change my time to take Harvoni from the evening to the morning so I could add 20mg of Omeprozole when I take it to try to ease my GERD. Last night I took my pill 3 hours early, then took my Tuesday pill 12 hours later at 7 am. So for a little while I had extra Harvoni in me and my sinuses were running like a faucet! Maybe what I thought was just my allergies is actually a side effect. Anyone else experience this?
Title: Re: Harvoni Side effects
Post by: Keanu2015 on March 18, 2015, 09:12:29 am
Good morning Nadewitt, Everyone! Day 27,

               I did experience something related to respiratory back in the beginning of treatment. I had like a coating on my lungs which is the best way I can describe it. Sometimes it was minimally productive with a slight cough. It wasn't always there though. For periods it would seem to be gone and then the next day back again. Sometimes later in the same day I didn't notice it. When I did notice it I would wheeze when I breathed in deeply. It was only with me for the first few days or so (within a week). Very strange. I cannot say that I was ever sick. I have noticed recently thanks to Katie that my blood pressure has been running a bit higher than normal for me. Just keep watching your symptoms and keep track so you can get help and also report them! Thanks for your input Nadewitt. Hope you and everyone else is well today!
Title: Re: Harvoni Side effects
Post by: Ruthie on March 19, 2015, 12:18:27 am
4 week lab results

Platelets   117 (normal 150-450)
AST-SGOT   51 (normal 0-32)
ALT-SGPT    67 (normal 10-35)
HCV viral load   NOT DETECTED!!!!!!

I am so happy I had to share!

Congrats !!!!!

A note on your platelets-I have to see a hematologist regularly for anemia problems. He considers 100-400 to be normal. When I first saw him, mine were 3.  I Had to undergo IV iron treatments. Once my platelets got to 109, he was happy. So don't worry just yet about your platelet count (I say that because I worry about everything). It could just be the way that lab has their normal.

Congratulations to everyone on their great news!!!!
Title: Re: Harvoni Side effects
Post by: Kathy C on March 19, 2015, 12:53:52 pm
This morning my Infectious Disease Dr call to give me my results on my lab work.
When I started my treatment with Harvoni 4 weeks ago my Viral Load was 1.8 million
 And now my viral load is ____   28_____!
 This is a good Day!!!!
Title: Re: Harvoni Side effects
Post by: Keanu2015 on March 19, 2015, 01:10:07 pm
Hi Kathy C,
    That's great news! I also just had my VL test done (9am today) and so anxiously awaiting my results. I finished my first bottle of Harvoni 7am this morning. I'm praying for the best! I'll make sure I post when I receive it. Hope everyone is well today! ~K
Title: Re: Harvoni Side effects
Post by: pumpkin50 on March 19, 2015, 03:55:20 pm
This is my 2nd post as I was waiting to start my Harvoni before reposting  'I'm Genotype 1A with a VL of 298,000, treatment naive and have had Hep c since I was 13 yrs old and I'm 49 now...so basically 36 years.  I am on a 8 week treatment plan and I just took my 3rd pill last night...First I would like to say that my baseline prior to treatment is brain fog, exhaustion, insomnia and headaches at least 4 days out of the 7 day week.  After a lot of thought I had decided that I will be taking my pill at 930 at night so that it could be working during my sleeping hours and not competing with my stressful daytime lifestyle (which I'm working on changing) so Monday night I took my first pill which was both exciting and scary.  I had a strange sensation of tinnitis about and hour later which lasted about 4 minutes (this hasn't been a problem for me) and then an hour later I felt as though I felt kinda 'high/strange' and sleepy so I decided to not take my nightly Benadryl or Melatonin ( which I take nightly for insomnia) and just go to sleep. I slept great all night and I awoke without a headache which uncommon for me ( maybey my morning headaches have been due to my routine of taking Benadryl or Melatonin each night).  Tuesday I felt fine with no obvious new feelings and then I took my 2nd pill tuesday night and it made me sleepy so I once again didn't take my benadryl  and again slept well and woke up without my usual headache and the same for last night which was my 3rd pill and today I feel fine...I am taking it easy during the day but making sure to get in some exercise and trying to eat well.. I have not had any bursts of energy like some have posted and my normal brain fog and getting tired easily after a few hours of activities is still present but other than that I can just say that so far I am actually sleeping better (which is a miracle) and I have not had a headache yet...I am thankful for that and just trying to take it one day at a time!!  And drinking lots of water !  Thank you all for great tips!!!   
Title: Re: Harvoni Side effects
Post by: pumpkin50 on March 19, 2015, 04:01:33 pm
And to Kathy C.  28?!  OMG yes today is a beautiful day congratulations!!!!
Title: Re: Harvoni Side effects
Post by: Katie on March 19, 2015, 04:23:58 pm
Kathy C...you are a strong responder and on the road to a virus free life.  Congratulations!!!

Pumpkin...That is how it affected me too...hadn't slept well in over 10 years and am sleeping like a baby ever since I started Harvoni!  My HCV symptoms were much like yours as well and the brain fog lifted, energy increased and I felt better than I have in YEARS!  I will say, week 9 & 10 (I was on 12 weeks) I had a real slump for about 10 days with horrible fatigue and depression ( I have never been depressed) but one morning woke up feeling fine again.

One thing I want to mention is Melatonin isn't all that good for the liver and wouldn't take it during treatment, but hopefully you won't need to worry about it.

My EOT results were <12 but still detected, but I am still feeling good, still sleeping and there are new studies stating low viral loads at end of treatment does not mean you won't clear post treatment, so am very encouraged and will have another test in 3 weeks to make sure they are't replicating again.

GT 1a. VL 3 million at begin of treatment  59 at 8 weeks and <12 at EOT and feeling good!  ALT/AST 95% normal for the past 10 years with no cirrhosis.

Good luck to you and I hope your treatment is as easy and even more successful than mine!

Katie
Title: Re: Harvoni Side effects
Post by: kauri on March 19, 2015, 04:44:33 pm
Clever!! To offset costs by buying shares! Congratulations.
Title: Re: Harvoni Side effects
Post by: pumpkin50 on March 19, 2015, 08:34:42 pm
Thank you Katie for sharing your story with me!!  I had been learning so much about Harvoni and the side effects and planning how I was going to take it and changee my life style to be a little less stressful so that if possible I could 'help' the Harvoni do its job that I haven't reviewed much on what all can possibly occur at the EOT but it seems to me that <12 isn't much as compared to the beginning and possibly the Harvoni although you have completed your 12 weeks may have rendered the remaining ones useless!  Good luck on your next blood test it must be difficult to wait!   I am concerned myself about only taking the drug for 8 weeks, I understand the rationale that my VL is low however after having this for 36 years I figure they have taken up home for a very long time and are imbedded in every cell of my body (so to speak) however I will remain positive!1  I should also mention that I have an unual situation in that my boyfriend also has Hep C (we didn't contract from eachother. both confessed on our 3rd date that we had it) and he started his Harvoni yesterday. He is 1A and VL 2,500,000 and has been treated twice before (interferon /Ribaviron) and he is on a 12 week treatment plan.  He also has not yet had any side effects...tomorrow will be day 3 for him     
Title: Re: Harvoni Side effects
Post by: atomic dog on March 20, 2015, 04:11:36 pm
5.5 weeks in on Harvoni 12 week treatment. Yesterday I experienced severe dizziness, just barely to drive home and get in the bed. Straight to bed for 3 hours. Could be a gallbladder flare up (wasn't able to get it removed because Hep C can cause terminal bleeding). Took today off from work, listening to the stereo. Anyone experience dizziness?
Title: Re: Harvoni Side effects
Post by: atomic dog on March 20, 2015, 04:13:43 pm
Thank you Katie for sharing your story with me!!  I had been learning so much about Harvoni and the side effects and planning how I was going to take it and changee my life style to be a little less stressful so that if possible I could 'help' the Harvoni do its job that I haven't reviewed much on what all can possibly occur at the EOT but it seems to me that <12 isn't much as compared to the beginning and possibly the Harvoni although you have completed your 12 weeks may have rendered the remaining ones useless!  Good luck on your next blood test it must be difficult to wait!   I am concerned myself about only taking the drug for 8 weeks, I understand the rationale that my VL is low however after having this for 36 years I figure they have taken up home for a very long time and are imbedded in every cell of my body (so to speak) however I will remain positive!1  I should also mention that I have an unual situation in that my boyfriend also has Hep C (we didn't contract from eachother. both confessed on our 3rd date that we had it) and he started his Harvoni yesterday. He is 1A and VL 2,500,000 and has been treated twice before (interferon /Ribaviron) and he is on a 12 week treatment plan.  He also has not yet had any side effects...tomorrow will be day 3 for him     

Wow, a Harvoni love story. I like it. Best wishes to you both.
Title: Re: Harvoni Side effects
Post by: hayliegirl on March 20, 2015, 04:16:46 pm
Katie, thank you so much for the advice!! Turned out to be phenmonia!! I was more then relieved when I got the news!! Mostly, because I knew I wouldn't be feeling those side effects for long:) I thought it was Harvoni.... Looks like a great recovery from here.
Title: Re: Harvoni Side effects
Post by: mario555 on March 20, 2015, 05:09:48 pm
Atomic.... Don't worry too much about the dizziness, it should go away in the next 2-3 weeks! If it is like what I experienced, it comes super fast and is enough for you to fall...
I am on week 19 out of 24 and have experienced most of the side effects described in this forum.
After 7-8 weeks you should get over most of your side effects (but they come back with a vengeance after week 12...) the good news is that the pills won't kill you (I am the proof) and you should be able to get rid of that awful virus. That is the good news! The bad news is that you must bid your time and go through the side effects no matter what they are because there are no other ways to get rid of the virus for years to come. I have used valiums at times to help me cope with the treatment. It is an old medication but the effect stays with you for 2-3 days which is the time I needed to get a hold of my anxiety.
Good luck!
Title: Re: Harvoni Side effects
Post by: hayliegirl on March 20, 2015, 05:12:49 pm
Great advice Mario. How about insomnia?? Does that go away?? I can sleep but I am every 1hr and 15 mins.. It's annoying, but I can live with it!!
Title: Re: Harvoni Side effects
Post by: mario555 on March 20, 2015, 06:42:59 pm
Atomic. Yes I have had insomnia but generally, the quality of your sleep should improve.
If I may suggest... Go back to the beginning of November 2014 and you'll be able to read the posts from the 1st batch of patients. During our 1st few months we wrote extensively about our side effects. As you go up in time, you'll read about how we coped. It should make for a good read (if you have absolutely nothing else to do...).
The good news is that my wife finds that my overall health has improved tremendously, better skin color, muscle tone, level of activity, etc. It is definitely "doing something good". But.... I have a generally shitty mood and I am really impatient, a real pain in the.... Don't despair, you'll get through!
Title: Re: Harvoni Side effects
Post by: hayliegirl on March 21, 2015, 12:50:42 pm
Aside from not sleeping, going on 13 days of Harvoni, feel almost no side effects!! My daughter and husband are right beside me. God bless them. It's nice to reach out to others feeling; possibly the same things... Go to get levels checked in April.. Wish it was sooner. I was going to start taking Harvoni on the evening. I read that works best for someone...?
Title: Re: Harvoni Side effects
Post by: pumpkin50 on March 22, 2015, 03:12:51 pm
Tonight will be day 7 for me I take it each night between 930 and 10:00 pm and I have been sleeping very well ( my baseline is insomnia and I haven't had to take a Benadryl or Melatonin since I started)....No other side effects as of yet!  My boyfriend takes his Harvoni every morning and it does not make him sleepy like me, He is on day 5 and he says he has had a nightmare every night since starting which is not common for him...But no other side effects!  One day at a time...  Good luck to you all!!  And thanks Atomic,  hopefully a Hep C love story with a happy ending!!
Title: Re: Harvoni Side effects
Post by: kauri on March 22, 2015, 04:08:06 pm
Tomorrow is day 7 for me and I'm looking forward to finding out what's happening. Side effects have been same as for others...drowsy, falling asleep, sleeping extra deep and well, hints of a headache for a few days, then a real headache one morning.
My son son was sure it was dehydration and stood over me while I begrudgingly drank water..lo and be-hold! he's right again.
I know in traditional healing, it's thought that when you're killing off a bug, you need extra water to flush it out. That would explain it.
I have complicated health, so was worried I wouldn't be able to handle Harvoni, but so far so good. If I symptoms do get worse, I'll imagine the viruses dying off to distract me.
Thanks everyone for the warm community. Oops there's goes another 10,000 viruses :)
Title: Re: Harvoni Side effects
Post by: elizabethfaraone on March 22, 2015, 05:16:42 pm
It's been over a month since I finished Harvoni and I'm still very tired and whenever I am active, I end up nauseaous and with a headache.  Continue to gain weight.
Title: Re: Harvoni Side effects
Post by: hayliegirl on March 22, 2015, 05:28:50 pm
Hi Elizabeth, may I ask you how long you were on Harvoni?
Title: Re: Harvoni Side effects
Post by: elizabethfaraone on March 22, 2015, 05:31:38 pm
Hi Elizabeth, may I ask you how long you were on Harvoni?

12 weeks
Title: Re: Harvoni Side effects
Post by: Katie on March 22, 2015, 07:25:38 pm
Hey Elizabeth, I am sorry to hear that!  I am right behind you as I finished Feb 25th and every day feel a bit better, of course my treatment was really easy on me too.

 Have you thought about going in for a general check up to make sure nothing else is going on?  One gal wasn't feeling good and it turned out she had pneumonia.  She assumed it was side effects from Harvoni!

Hepatitis C can affect many things since the liver removes toxins and is important in all aspects of health.  It may be you are just adjusting to such a drastic change and hopefully it will work itself out, but that doesn't  mean it is fun to go through.

You hang in there and take good care of yourself!  Spring is here and that will help all of us.  A time for rejuvenating and becoming stronger!!    8)

Katie
Title: Re: Harvoni Side effects
Post by: elizabethfaraone on March 22, 2015, 07:36:03 pm
Hey Elizabeth, I am sorry to hear that!  I am right behind you as I finished Feb 25th and every day feel a bit better, of course my treatment was really easy on me too.

 Have you thought about going in for a general check up to make sure nothing else is going on?  One gal wasn't feeling good and it turned out she had pneumonia.  She assumed it was side effects from Harvoni!

Hepatitis C can affect many things since the liver removes toxins and is important in all aspects of health.  It may be you are just adjusting to such a drastic change and hopefully it will work itself out, but that doesn't  mean it is fun to go through.

You hang in there and take good care of yourself!  Spring is here and that will help all of us.  A time for rejuvenating and becoming stronger!!    8)

Katie

She had pneumonia without a fever and without congestion?
Title: Re: Harvoni Side effects
Post by: Katie on March 22, 2015, 07:56:21 pm
I don't know about congestion...she said her insides felt on fire so I encouraged her to go to a doctor if she had a fever.

Walking pneumonia can be very sneaky.  I had a friend who actually died from it even though he was going to a doctor for trouble breathing and they were concentrating on his heart and never did a lung xray.  He even saw a heart specialist.  It was horrible. 

I wasn't implying you have pneumonia, just that something else may be going on and sometimes it is good to have everything checked out.  We all went through a strong treatment right during the bug season.

Hope you feel better soon!

Katie 
Title: Re: Harvoni Side effects
Post by: Keanu2015 on March 22, 2015, 08:58:05 pm
Hi Everyone!

    Day 31 of 84 coming to a close. Nothing new to report good or bad. I do have some lower back pain/aching but I think that is unrelated. I do have an ADR in there but my knee has also been shredded in the past and anything that causes unusual (unexpected for me) joint pain usually goes there first or at least simultaneously.

    Omg Katie I'm so sorry to hear about your friend! It's a darn shame they couldn't catch that sooner. They have meds for such things! ugh :-[
Elizabeth, my gut tells me that if we can clear this disease that's been with us for so long, that we necessarily MAY NOT be tiptoeing through the tulips immediately after treatment. I agree with Katie. Give the hope of truly feeling well some time to unfold. Just keep track of the VL and make sure it's gone! Hope everyone is having a good night of healing! 
Title: Re: Harvoni Side effects
Post by: Katie on March 22, 2015, 09:57:31 pm
Thanks Keanu, It wasn't as if it happened overnight either.  It went on for a couple months of complaints and doctor appointments, but he just didn't question the doctors.  He literally dropped dead in a parking lot after he took his wife to the opera!  She insisted on an autopsy and they found he had a very healthy heart and cause of death was walking pneumonia.

So lesson learned.  Be pro active, keep all of your health records and ask questions.  If you feel the doctor isn't listening to you, get a second opinion or third!

All of us have seen doctors on and off for years so I am sure you all can relate.

On a happier note, we have another beautiful spring day here and my daffodils are about to open.  Lots of things popping up and budding out.  I LOVE spring and am grateful to be here enjoying it!

Katie
Title: Re: Harvoni Side effects
Post by: Ruthie on March 22, 2015, 10:09:43 pm
Katie, I'm so sorry about your friend :(

A dear friend of mine has an immune problem called Iga deficiency. She never gets a fever. She finally got her current doctor trained that when she says she has pneumonia, she has pneumonia.

Elizabeth, I hope you get some energy soon!
Title: Re: Harvoni Side effects
Post by: Lynn K on March 22, 2015, 10:42:48 pm
Went to my local walk in clinic today I have the cold/cough going around for a week today.

Because of my chronic severe medical condition cirrhosis plus anemia from the riba just to make sure I don't develop pneumonia and also because I have a slight rattle on extream exhale I now have antibiotics plus an inhaler along with codine cough syrup to go along with the Harvoni riba stew swimming in my blood.

Eighteen weeks down and six to go on Tuesday last bottle arrives on Wednesday and my birthday is Thursday hope I feel better soon :(

May we all be 1000% feeling better after beating hep c!
Title: Re: Harvoni Side effects
Post by: Katie on March 22, 2015, 10:58:42 pm
Feel better Lynn!  Sorry you got the crud, just to top everything else off.  Congratulations on hitting the 3/4 mark!  It's downhill for you now and you'll be finished soon.  What a relief for you and I just know you are going to beat it this time around.  I am looking forward to do the Happy Dance with you!

Rest and let those antibiotics do their job so you feel good on your Birthday.  Hope it is a special one and you are surrounded by love and lots of sunshine!

Katie
Title: Re: Harvoni Side effects
Post by: EleanorB on March 23, 2015, 04:09:09 pm
Just started on Harvoni - am day 11 of 8 week treatment.

The nausea was bad for the first 4 days, but has subsided and a lot of the Hep C symptoms I had like upper right quadrant pain are already getting better.

Would like to know if anyone else experienced the feeling of a "fizzy" liver in the first days and whether anyone else has had a red, itchy rash on lower arms and legs.

Good luck everybody!
Title: Re: Harvoni Side effects
Post by: Keanu2015 on March 23, 2015, 04:48:16 pm
Hi Everyone! Day 32of 84,

    Hi Eleanor! I had the same sort of symptoms but without the rash. I'm almost sure that rash was caused by the virus die-off looking for places to exit your body though. When I exercise and sweat I get flushed and itchy in some parts of my lower back. I always imagine it's because the body is forcing dead virus out any way possible. Drink a ton of water and when you're sick of it drink more!... Everyday! I had bad terrible upper right quadrant pain as well which by now is all but gone. I still notice that area if I eat too much sodium or sugar for the day ( I use the fitness pal app so I can see those numbers), but it's not painful anymore thank God! Harvoni is amazing. I'm still waiting for my 4 week VL to come to me. It was mailed from the lab Friday. Sounds very difficult what you're going through Lynn. Prayers for fast healing. Hope you have a happy birthday! Hope everyone is feeling well today!
Title: Re: Harvoni Side effects
Post by: elizabethfaraone on March 23, 2015, 06:23:16 pm
I don't know about congestion...she said her insides felt on fire so I encouraged her to go to a doctor if she had a fever.

Walking pneumonia can be very sneaky.  I had a friend who actually died from it even though he was going to a doctor for trouble breathing and they were concentrating on his heart and never did a lung xray.  He even saw a heart specialist.  It was horrible. 

I wasn't implying you have pneumonia, just that something else may be going on and sometimes it is good to have everything checked out.  We all went through a strong treatment right during the bug season.

Hope you feel better soon!

Katie

Thanks for the information.  I was just curious.  I think I want to have an x-ray of my lungs just to make sure everything is OK after treatment.  Especially since I have a history of Spontaneous Pneumothorax.  I didn't realize you can have pneumonia and have minor symptoms.
Title: Re: Harvoni Side effects
Post by: Islandgirl on March 23, 2015, 07:04:22 pm
Yes, Elizabeth, I never dreamed I had pneumonia and had gone to the doc for something else but also had a cough. 

They were glad I came in because they discovered I had "walking pneumonia" in one lung!  A pretty heavy duty antibiotic shot and a filled prescription took care of.  We were all surprised that I had it, but as Katie said, you can die from it so it's nothing to mess around with.  I felt lousy, didn't have a fever, and never even thought about pneumonia as a possibility...

Whatever is going on, I hope you get an answer, get rid of it, and are back on a healthier track soon!  Sending you healing thoughts and energy.  ...Islandgirl 8)
Title: Re: Harvoni Side effects
Post by: elizabethfaraone on March 23, 2015, 07:21:25 pm
Yes, Elizabeth, I never dreamed I had pneumonia and had gone to the doc for something else but also had a cough. 

They were glad I came in because they discovered I had "walking pneumonia" in one lung!  A pretty heavy duty antibiotic shot and a filled prescription took care of.  We were all surprised that I had it, but as Katie said, you can die from it so it's nothing to mess around with.  I felt lousy, didn't have a fever, and never even thought about pneumonia as a possibility...

Whatever is going on, I hope you get an answer, get rid of it, and are back on a healthier track soon!  Sending you healing thoughts and energy.  ...Islandgirl 8)

Thank you for the information.
Title: Re: Harvoni Side effects
Post by: Long_Haul on March 24, 2015, 09:42:15 am
@Elizabeth, sorry to hear you are not feeling well. As others have said, definitely have it checked out. I hope you get some answers and feel better soon.

@Lynn, I can really sympathize with you on the respiratory issues. I have been really fatigued and haven't posted much lately because of it. The Ribavirin has given me fits the last 4 weeks. Lots of dry cough during the day and waking with a bit of congestion. That along with being generally wiped has had me down and out. After 3 earlier rounds of it , I know this is normal progression for me with Ribavirin. It will be a moot point after Thursday as it will be my last day on meds. Met with my GI a week ago and he believes I will be done for good this time and can expect from my labs and such that I will make SVR12. ;D
I am looking forward to my EOT results and then have to wait until July for my 12 week labs. Good luck with clearing the rattle and I hope you are breathing a little better.

@Katie, good news about spring up there in Alaska. We still have a foot and a half of crusty snow on the ground and it was around zero here last night.  Can you please send along some of that warm Alaska weather to us here in Vermont. Good luck on your next PCR results.


Best wishes to all,

AL

Title: Re: Harvoni Side effects
Post by: Keanu2015 on March 25, 2015, 09:58:45 am
Hello everyone!

   Day 34.... I got my result back from my day 28 labs- HCV RNA =UNDETECTED!!. Funny thing is that I requested my own blood tests for AST, ALT,D and platelets at 2 weeks and HCV RNA Quantitative (VL) at 4 weeks. So I'm waiting a few days for my copy of the 4 weeks result which didn't come and so I decide to call them this am. They fax me a copy and there's a note on the bottom. It says 'call DR for appt. HCV RNA 0 - Finish course RX'. To me that seems a bit scary. So I'll guess they want me to do EOT at 8 weeks? I have cirrhosis and am on a 12 week course. To get that financially covered was like pulling teeth and I'm not sure if that's the right thing to do. Does anyone have thoughts on this? Should I be happy and just go with it? Thanks in advance for your input.
Title: Re: Harvoni Side effects
Post by: EleanorB on March 25, 2015, 11:02:41 am
@ Keanu - I would assume that their record keeping is not great and that the response you received was an automated one. If you are on a 12 week course and got approval for it, you should stay on it and finish it by all means. Stopping at 8 weeks does lead to a higher relapse rate for those with higher viral loads, so unless you get strict instructions from a real MD to stop, I would say you should stay on treatment. As one who knows, software is bad all around and you always have to fight to be your own advocate. 
Title: Re: Harvoni Side effects
Post by: Keanu2015 on March 25, 2015, 12:34:57 pm
Hi Eleanor,

         I did make an appt to see him on April 8th. My last pill of my 2nd bottle is April 16th (8 weeks). I just spoke to Harvoni's support path and they said they HIGHLY recommend I stay on treatment for the full 12 weeks.
Of course who really knows what he's thinking. My doctor doesn't stand to gain by cutting me off right? I look at it both ways. Yes I have F-4 but on the other hand my viral load at start was under 4 million. In some cases, taking the pill longer than needed is counter productive. Things to ponder I guess. Thanks for your help Eleanor. Hope you and everyone else is doing well today!
         
Title: Re: Harvoni Side effects
Post by: EleanorB on March 25, 2015, 01:15:52 pm
@ Keanu - Sounds like a good plan. Good luck and good health!
Title: Re: Harvoni Side effects
Post by: mario555 on March 25, 2015, 01:19:38 pm
Keanu, I vote the same as Eleanor. Take as much as you can get or afford because if you relapse, they won't have something new for many years to come. They could retreat but you have already done well up to now!
I have a similar history with my hep c and I'm scheduled for 24 weeks. I have already done 19 full weeks and I can't stand the pills anymore. Everyday I want to quit but after 2 failed attempts, I don't want a 3rd one! If you do 24 weeks, you have close to 100% chances of a cure. Everyday I want to stop and everyday I have to tell myself to shut up and swallow! I am looking at my last bottle and can't stand the sight of it anymore but...
I would suggest you call the Gilead help line, explain your case and ask for a deal on additional weeks. Then put your money together and "invest in yourself". You wouldn't hesitate one second if your daughter was sick, do the same for you!
I don't know which pill will "do the trick". Is it my week 16? 20?. I am almost 100% confident I am cured by now (VL4 was UND) but what if?? Try to get 16 weeks? You never know... Good luck to you!
Title: Re: Harvoni Side effects
Post by: Katie on March 25, 2015, 01:34:32 pm
Hi Keanu,  That's wonderful news but just remember, there isn't a test that is sensitive to zero and there are those who have been UD during trials who relapsed.  I don't know about Harvoni as most results aren't in for SVR12 but it certainly happened with S/O.  What your test definitely did show is that you are a strong responder and will beat this thing but don't be premature about the treatment, especially since you have cirrhosis.

Very exciting news.  How did the rest of your blood work look?

Make the appointment and have a wonderful day knowing you are on the healing path!

Joy to you,

Katie
Title: Re: Harvoni Side effects
Post by: TTSP on March 25, 2015, 03:19:20 pm
@keaunu First of all I wish you the best with your doctor and the insurance company.

I am having trouble with my insurance company over refills for a $15 (retail) bottle of Triamterene-HCTZ! And I have not had any blood work done since I started Harvoni on Feb. 26. I'm 6 days behind you.

I can understand people who have had previous relapses with other treatments getting blood work more often. My current doctor told several times that my best chance at getting the Harvoni for a full 12 weeks was to avoid multiple tests.

I have gone back and forth on all of this. I'm beggining to believe the doctor was right. By the way my case is similar to yours. I have not had any previous treatments, stage 4 cirrhosis, viral load 3.7 million.

I want nothing but the best for everyone. One day I want to scream at my doctor and tell him to order the damn tests, the next, I see the logic in patience over angst.
Right now I'm going to stay with the plan and do 12 weeks, test at the end, and do a comprehensive test with some sort of biopsy 3 months later. If it doesn't work, I will ride it out till the next time. I don't expect anyone to agree with me. This is my decision. Who knows I may change my mind later.  ;D

Nothing but the best to everyone!  :)
Title: Re: Harvoni Side effects
Post by: Lynn K on March 25, 2015, 03:20:46 pm
Looks like standard notes on the end of the report also " Finish course RX" RX means prescribed so that means finish course prescribed so if you were prescribed 12 weeks that is your prescribed course.

In other words finish your 12 week treatment as you were prescribed.

Good luck
Title: Re: Harvoni Side effects
Post by: SunIsOut on March 25, 2015, 05:58:39 pm
@keaunu First of all I wish you the best with your doctor and the insurance company.

I am having trouble with my insurance company over refills for a $15 (retail) bottle of Triamterene-HCTZ! And I have not had any blood work done since I started Harvoni on Feb. 26. I'm 6 days behind you.

I can understand people who have had previous relapses with other treatments getting blood work more often. My current doctor told several times that my best chance at getting the Harvoni for a full 12 weeks was to avoid multiple tests.

I have gone back and forth on all of this. I'm beggining to believe the doctor was right. By the way my case is similar to yours. I have not had any previous treatments, stage 4 cirrhosis, viral load 3.7 million.

I want nothing but the best for everyone. One day I want to scream at my doctor and tell him to order the damn tests, the next, I see the logic in patience over angst.
Right now I'm going to stay with the plan and do 12 weeks, test at the end, and do a comprehensive test with biopsy 3 month later. If it doesn't work, I will ride it out till the next time. I don't expect anyone to agree with me. This is my decision. Who knows I may change my mind later.  ;D

Nothing but the best to everyone!  :)

Hi everyone,

A liver biopsy is not all that conclusive and relies on random samples of the liver that might be right or not.  The new alternative is Fibroscan that is comprehensive and accurate without being invasive.

I would not rush on a new biopsy before you give the liver a chance to regenerate as well.  Here is an article on the Fibroscan.

http://www.henryford.com/body.cfm?id=46335&action=detail&ref=1993 (http://www.henryford.com/body.cfm?id=46335&action=detail&ref=1993)

Something to consider.  For me my blood platelets were so low that they had to do a transjugular biopsy so if I began to bleed I would bleed back into the vein.  I had an infection from the injection at my neck and do not see myself repeating this procedure.

I go for my labs this Friday as they pushed my appointment out a week and I am on my second bottle now.

Take care all!
Title: Re: Harvoni Side effects
Post by: Keanu2015 on March 25, 2015, 07:11:11 pm
Hello Everyone!

     Thank you all so much for your great info. In my mind I have decided to stick with the 12 weeks. I hope my doc and health insurance continue to see it the same way. Lynn Thanks I do now feel like I must have misinterpreted the note. My Ins. approved RX is definitely for a 12 week course. I also have my insurance backed up on that as well with supplemental Ins. so that was a blessing. Katie there was no other blood work ordered. I asked for the VL test to see where I stood and that was all they agreed to test. I'll ask for another VL test AFTER I get my 3rd bottle! Perhaps at EOT 12? TTSP You ARE really similar to me wow! I was holding on as long as I could for this better treatment as I was getting savaged. I was starting to become a shell of my former self so this couldn't have happened at a better time for me. Sunisout I agree with you... The medieval biopsies are an unnecessary risk! (Read that link TTSP! I did the Fibrosure test myself and my Ins. accepted that). Folks I have another question: Natural Wellness has a product called Ultra Nourish. Is anyone else using that to help our livers regenerate and fight this while on treatment? I've been doing so but only 1/2 scoop mixed w cranberry juice every other day and 12 hours AFTER I take my Harvoni. Anyway, again I really appreciate you all for helping me out. I'm praying for everyone to whip this horrific beast. God bless!
Title: Re: Harvoni Side effects
Post by: kaemicha on March 25, 2015, 07:26:49 pm
Hi all,
I'm Michelle and I'm also new to Harvoni. Two and 1/2 weeks ago. Last week I felt great and was so happy but this week I feel worse than before I started the Harvoni. I'm weak, dizzy can't sleep and have zero energy.

Until today, most of the Harvoni posts seemed to be so positive with no side affects but today I see others have problems and I think someone said they felt better 6 weeks in.

I'm supposed to go out tonight and need to get out but I'm just so shaky..but don't want to be housebound. I guess I'm just saying Hi, posting my problem and if anyone has any helpful information, I'd appreciate it. I'm so glad this forum is here!
Title: Re: Harvoni Side effects
Post by: mallen on March 25, 2015, 07:50:20 pm
hi,i will be starting harvoni 3-27-15,i drink 2 beers a day,should i stop?i have had hep-c for 30 years or more.Enzyme levels are ok, and liver is fine.any food tips for stomach issues when starting?thank you.
Title: Re: Harvoni Side effects
Post by: SunIsOut on March 25, 2015, 08:00:12 pm
Hi all,
I'm Michelle and I'm also new to Harvoni. Two and 1/2 weeks ago. Last week I felt great and was so happy but this week I feel worse than before I started the Harvoni. I'm weak, dizzy can't sleep and have zero energy.

Until today, most of the Harvoni posts seemed to be so positive with no side affects but today I see others have problems and I think someone said they felt better 6 weeks in.

I'm supposed to go out tonight and need to get out but I'm just so shaky..but don't want to be housebound. I guess I'm just saying Hi, posting my problem and if anyone has any helpful information, I'd appreciate it. I'm so glad this forum is here!

Hi Michelle,
My energy is in cycles and today was a sleep a lot day.  I have some reading to do for work and some outdoor raking and pruning so I am hoping to force the issue tomorrow.  I do not get the headaches but I do have this constant pressure sort of like sinus pressure without the sinus problems and fuzzy vision. I cannot tell what is Harvoni or my body in change so I am just rolling with it.  I think we all have some variations in our bodies vibe and I for one am not pointing fingers at the medicine or how I am adjusting to it.
Title: Re: Harvoni Side effects
Post by: Keanu2015 on March 25, 2015, 08:00:28 pm
Hi Michelle and Mallen,

      Michelle If you meant you've been taking Harvoni 2.5 weeks? then I'd have to share that after my 3rd week I was feeling worlds better! There will be ups and downs but this medicine is amazing! hang in there! Mallon if your doctor hasn't already told you to abstain from alcohol 100% then please allow me-Don't do it brother! Your liver doesn't need any extra work while it's going through this! Give yourself a chance to be cured first then perhaps you can celebrate later if you choose. Personally I'm not touching even one until a year after I absolutely KNOW I'm 100% cured.
Title: Re: Harvoni Side effects
Post by: SunIsOut on March 25, 2015, 08:07:20 pm
hi,i will be starting harvoni 3-27-15,i drink 2 beers a day,should i stop?i have had hep-c for 30 years or more.Enzyme levels are ok, and liver is fine.any food tips for stomach issues when starting?thank you.

Hi Mallen, I like wine but I am in no way mixing that with this treatment so it has been straight water and juice for me.  I am not a doctor and mine did not exclusively mention not to.  I personally think that there are so many things that are toxic to the liver (fructose, fat, chemically laced foods) that picking a fight on a couple of beers or wine seems over kill but I personally chose to abstain.

All our diets are different. I only eat fresh meats, veggies, fruits, nuts, organic yogurt.  I would understand the difference in glucose that is used by every cell in the body versus fructose that no cells want and your liver has to process it out.  Naturally occurring sugars are fine.  All this changes if you are diabetic and I am not.  I have not had any stomach issues but I also do not eat that much high acid food and I never mix protein with starch as the stomach acids to digest are totally different so it just sits in your gut.  Lots of reading material on all this out there.

Have fun, moderate and know you are on the mend.
Title: Re: Harvoni Side effects
Post by: kaemicha on March 25, 2015, 08:09:34 pm
Thank you, Keanu  Your reply helped me enormously. It gives me hope and boy, do I need it!

I will be here, in the forum, to ask many more questions! This is the first time I've found a place where I can talk openly, about what is going on.

Michelle
Title: Re: Harvoni Side effects
Post by: Keanu2015 on March 25, 2015, 08:15:48 pm
Mallen, to me a liver friendly breakfast is the best way to keep that stomach in check. As one idea I like to eat a cup of dannon vanilla activia light yogurt with a cup of raw strawberries chopped into it. I think that's been helping to keep my digestion good. I also like a bowl of oatmeal on occasion. Kashi cereals are good too. They don't have a lot of iron in them. Too much is bad. I have lots of ideas and tips but I could write all day. Just thought I'd toss you a tip or two for now.

Michelle glad I could help but just fyi I'm a rookie too! lol I do have some good ideas and will also try my best to pass along what I have learned from others! You're in the right place! Good luck everyone!
Title: Re: Harvoni Side effects
Post by: SunIsOut on March 25, 2015, 08:30:25 pm
Mallen, to me a liver friendly breakfast is the best way to keep that stomach in check. As one idea I like to eat a cup of dannon vanilla activia light yogurt with a cup of raw strawberries chopped into it. I think that's been helping to keep my digestion good. I also like a bowl of oatmeal on occasion. Kashi cereals are good too. They don't have a lot of iron in them. Too much is bad. I have lots of ideas and tips but I could write all day. Just thought I'd toss you a tip or two for now.

Michelle glad I could help but just fyi I'm a rookie too! lol I do have some good ideas and will also try my best to pass along what I have learned from others! You're in the right place! Good luck everyone!

I mix fresh berries with my yogurt too and tend to fancy the organic Stonefield Raspberry, Blueberry and Strawberry and cut up fresh strawberries or pour in the other two.  :)
Title: Re: Harvoni Side effects
Post by: Karen1124 on March 25, 2015, 08:34:11 pm
Hi Keanu,
Congrats on being undetected!! I just think they want you to call the doctor for an appointment. I don't think that they want to stop your treatment at 8 weeks. Sounds like your doing well! Life is Good!!... Karen
Title: Re: Harvoni Side effects
Post by: Karen1124 on March 25, 2015, 08:51:38 pm
Hi Mallen,
I read your post about drinking 2 beers a day. I would say to ask your doctor. My opinion is no alcohol while on treatment. Take care of yourself eat right and exercise! Drink lots of water to flush your system! Hopefully no side effects. Best wishes to you! Life is Good!!
Karen
Title: Re: Harvoni Side effects
Post by: Mugwump on March 26, 2015, 12:50:06 am
hi,i will be starting harvoni 3-27-15,i drink 2 beers a day,should i stop?i have had hep-c for 30 years or more.Enzyme levels are ok, and liver is fine.any food tips for stomach issues when starting?thank you.
I do not known how alcohol will effect the ingredients in Harvoni in your stomach. It takes about 4 hours for the liver to fully metabolize the dosage so I would consider not taking anything that may or may not effect the ability of the liver to take up the med. It is know that Harvoni can be taken on an empty stomach or with food. But there is some literature that finds it is best to take the meds on an empty stomach because it is more quickly metabolized if you have a more acidic stomach content.

I have found that by taking the med in the morning along with my thyroid med and then eating about 3 hours later the side effects are minimal and I have stage 4 cirrhosis. Remember that alcohol actually causes the liver to slow the production of blood sugars and those who have diabetes can actually become hypoglycemic if they drink. So I would avoid it all together if I were you, if you must then try to buy beer that is down at 3.5 to 4% at least for the duration of the treatment and only have it after at least 4 hours taking the Harvoni.

The Harvoni will for the first while cause you to pass more urine and you will find the last thing you need is a dose of vitamin P in the form of beer, you will find that you need to drink more fluids yes but anything that has a diuretic effect is not a good thing!

Take care
Eric
Title: Re: Harvoni Side effects
Post by: cycler on March 26, 2015, 06:53:21 am
Just started week 2 yesterday.  So far only effects have been a mild headache from time to time.  Tylenol takes care of it for me.  On day 6, however, I woke up feeling like I had a hangover.  Still managed to get to work and put in a full day, as the fog lifted after a few hours, a couple cups of coffee, and an extra tylenol. 
Title: Re: Harvoni Side effects
Post by: TTSP on March 26, 2015, 06:56:27 am
@ sunis out I like how you highlighted my comment. Apparently you missed a few words like "some sort of". I'm aware that the old biopsy is not the way to go. Where I live, there is no one doing that anymore! I used the term biopsy loosly. I know what a Fibroscan is.
Title: Re: Harvoni Side effects
Post by: TTSP on March 26, 2015, 07:10:17 am
To all! I have been to many liver experts and have followed hep research for 13 years. I have yet to hear anything about wine or a couple of beers being OK at all.

I have refused the "mid evil" biopsy ever since my 1st and only one in 2002
Title: Re: Harvoni Side effects
Post by: TTSP on March 26, 2015, 10:01:32 am
As far as digestive problems go, I've had my share in the past. Not so much in the 1 month that I have been on Harvoni. I do agree watching what you eat is important.
Acids especially. I also do not eat too close to bed time. My goal is to get through this 12 weeks without any or very little help from any other drug whether it be antacids or pain medication.
Title: Re: Harvoni Side effects
Post by: SunIsOut on March 26, 2015, 10:42:49 am
@ sunis out I like how you highlighted my comment. Apparently you missed a few words like "some sort of". I'm aware that the old biopsy is not the way to go. Where I live, there is no one doing that anymore! I used the term biopsy loosly. I know what a Fibroscan is.

My apologies and it is all good!  :)  Just for the record though......a biopsy is the technique of taking actual tissue and a fibroscan is not a sort of biopsy. Hey I forgive you. I think.
Title: Re: Harvoni Side effects
Post by: TTSP on March 26, 2015, 04:07:39 pm
@ islandgirl It's all good here too.  :)
Thanks  ;D
Title: Re: Harvoni Side effects
Post by: Islandgirl on March 26, 2015, 04:47:52 pm
Thanks :)  Happy to hear that!

I'm on pins and needles... had labs done yesterday and should know late next week if I'm still UND @ 1 month post 12 wk TX Harvoni.  Been going through a depressed stage so haven't been posting much; not sleeping or feeling quite as well as I did before end of tx...  I'm sure it's all good, or will be ;D  ....Islandgirl 8)
Title: Re: Harvoni Side effects
Post by: mario555 on March 26, 2015, 05:44:22 pm
Islandgirl. Please let us know how things turn out next week! You'd be the first one able to give us some news about the treatment. We all wish you the best of luck!
Title: Re: Harvoni Side effects
Post by: kate0b1 on March 26, 2015, 05:46:59 pm
hey island girl, good to see you, i have been MIA the last few weeks also, i am two weeks out today and today i feel great (it may be that it is warm and the sun is kinda out lol). The last two weeks on tx seemed i felt a little worn out and not bad but not good either, i have two weeks until next labs (hello anxiety, please hold my hand). I just want to be done the wait  ;)

ps how's your mama?

kate
Title: Re: Harvoni Side effects
Post by: kate0b1 on March 26, 2015, 05:48:07 pm
and @ al, your done today i believe  ;D welcome to the waiting game

be well my friend

kate
Title: Re: Harvoni Side effects
Post by: Islandgirl on March 26, 2015, 07:13:12 pm
Thanks guys.  I'll keep you posted and want to know what's going on with all of you too.  Even when I'm not up to writing I still check in occasionally.  Gotta kick this depression. Yes, the waiting game is not easy and holding hands is needed and appreciated.  I'm here for you and know you are for me too.

Feel a hug, Kate, and thanks for asking about my mama.  She's doing pretty well but  I took her to the pain management doc today (she goes every 3 months and is not a candidate for surgery) and she'll have to have another injection procedure done next week for her sciatica and compression fracture issues as the pain meds are just not holding her well enough now.  Hope it helps...  I try not to worry her with my issues and try not to show that I'm worried/depressed.  It's hard to  keep something from someone when they live with you.  I'd never told her I had Hep C so she wouldn't worry all these years, but now she does know and I'm trying not to let her see my concern.  At 91 she doesn't really understand all this but she does understand that if something happens to me it will greatly impact her life.  So, chin up and march on :)  Wishing all of us the best ...Islandgirl
Title: Re: Harvoni Side effects
Post by: Long_Haul on March 26, 2015, 07:48:34 pm
@Kate, I am Done, Done, Done! I too have been off since about week 9. Riba had me feeling a bit anemic and quite fatigued. I get EOT labs in the morning, so my regular counts should be posted by Sunday and my viral load Monday evening. I expect it will be UND. I talked my Primary into doing a Viral count at 4 weeks as my GI was waiting to do SVR12 test in late June. She ordered the test for me. At least some of the wait will be easier.  Glad you are well.

@Islandgirl, I'm sure you have good news coming soon. Hugs and positive energy to you, know we are here and care about you,


Best wishes,


AL
Title: Re: Harvoni Side effects
Post by: nadewitt on March 26, 2015, 09:34:41 pm
Congratulations to everyone with good labs and good wishes to everyone waiting for results!

My advice to anyone just starting Harvoni who suffers from acid reflux, take the pill first thing in the morning with your proton pump inhibitor. Since I have switched to mornings I haven't had any more issues with my acid reflux. Such a relief!

I am very envious of people who have access to a fibroscan. The nearest machine to me is 200 miles away so I have just been going in for an ultrasound every 6 months. All it does is confirm that I have cirrhosis.

I found out today when I ordered my 3rd bottle of Harvoni that my insurance company more than doubled my copay. Since I am on the 24 week prescription, that means I am paying more for this and the next 3 bottles of pills.

I continue to have headaches, sinus congestion and tinnitus but still so much better than the last 2 treatments. I can stick to it! Thanks for all your advice and support.
Title: Re: Harvoni Side effects
Post by: MEG on March 26, 2015, 11:08:12 pm
Congratulations @Keanu for your 0 report! I agree with Eleanor, they should mean finish the 12 weeks that was ordered but def check to make sure. With cirrhosis, no way you should be getting 8 weeks...

It's great to read about everyone's progress....God bless you all!

I wrote in another thread that it's been kind of rough going. Sinusitis that won't quit---->relapsed twice on antibiotics. Hopefully that is behind me now.

But what is in front of me is elevated liver functions from the antibiotics and a terrible strained neck with pain that radiates down my arm. Heating pad and a topical NSAID(Voraten) that I started today seems to be beginning to help...

My profound fatigue persists---but I can't put it on Harvoni since I was sick with the sinusitis/cold since October....

Still drinking lots of water, and lots of hope!
xoxo
Title: Re: Harvoni Side effects
Post by: Lynn K on March 27, 2015, 03:00:38 am
Hi Nadewitt

Have you been to the Support path web site to sign up for the copay coupon so all you have to pay is $5 and support path pays the difference? I don't think people on social security medical (is that Medicare) qualify but otherwise it should be just a phone call.

Providers and patients can call 1-855-7-MYPATH (1-855-769-7284) for assistance

https://www.harvoni.com/co-pay-coupon-registration?evo_source=MYSUPPORTPATH&_ga=1.36090784.1478436839.1408430403

Pay no more than $5 per co-pay for HARVONI
We believe that cost should not be a barrier to receiving treatment. That’s why the makers of HARVONI offer a co-pay coupon. If you are eligible, you may pay no more than $5 per co-pay. Some restrictions may apply. See Terms and Conditions below.

Co-pay Coupon Terms and Conditions

The HARVONI co-pay coupon program will cover the out-of-pocket costs of your HARVONI prescriptions after you pay the first $5 per prescription fill, up to a maximum of 25% of the catalog price of a 12-week regimen of HARVONI. The offer is valid for 6 months from the time of first redemption
For residents of the 50 states, District of Columbia, Puerto Rico, Guam, and the Virgin Islands. Prescriptions must be filled by a pharmacy in these locations
The coupon is limited to one per person and is not transferable
Coupon is not valid for prescriptions eligible to be reimbursed:
in whole or part by Medicare, Medicaid, or any other federal or state-funded healthcare benefit program
by private plans or other health or pharmacy benefit programs that reimburse you for the entire cost of your prescription drugs
The HARVONI co-pay coupon is not prescription drug coverage or insurance and is not intended to substitute for such coverage
Gilead Sciences, Inc. reserves the right to terminate or modify this coupon at any time without notice
Title: Re: Harvoni Side effects
Post by: Lynn K on March 27, 2015, 03:09:32 am
I think the fibroscan is more a substitute for a biopsy than an ultrasound.

The fibroscan stages degree of liver damage like F4 cirrhosis just is not invasive not using a big needle into your liver. I have only had one fibro scan but dozens of abdominal ultrasounds which along with the AFP blood test are used to check for the development of liver tumors as we with cirrhosis have an elevated risk of developing HCC. I do not think a fibroscan is used to check for liver tumors only an ultrasound or maybe something like a CAT scan or maybe MRI can do that.

I will be having my next 6 month ultrasound in June and don't really expect to have a fibroscan ever or maybe in many years to see if the cirrhosis has improved any after I make SVR

Anyhow good luck on treatment to all
Title: Re: Harvoni Side effects
Post by: Keanu2015 on March 27, 2015, 08:46:59 am
Good morning Everyone,

     Day 36 of 84, Thanks so much for that informative bit of info Lynn! I'm in the same boat as you. I'll be praying for improvement as well.
I researched decaff coffee this morning (which I drink a lot of) and got some disturbing news on how it's made. I'll be in the process of switching brands to a company that uses a natural method of decaffeinating the beans. If you drink decaff, definitely look into using a company such as Coffee Bean Direct for a safer process of manufacturing. Hope everyone is well!
Title: Re: Harvoni Side effects
Post by: rayne97 on March 27, 2015, 09:58:58 am
Hello I am 23 years old I have had hep c my whole life. I just started harvoni i am on day three now and this is the first time I have been treated. I had trouble with nausea the first day but that has become very mild to where it is more like a lack of appetite. My main concern is not being able to sleep because I have a small child who did not get hep c (thank god) but I am having trouble keeping up with a toddler with no sleep , any suggestions?
Title: Re: Harvoni Side effects
Post by: mallen on March 27, 2015, 10:14:55 am
thank you for the input.i will not be drinking any beer while on treatment.this is a very helpful site with nice people.
Title: Re: Harvoni Side effects
Post by: Mugwump on March 27, 2015, 06:57:46 pm
Hello I am 23 years old I have had hep c my whole life. I just started harvoni i am on day three now and this is the first time I have been treated. I had trouble with nausea the first day but that has become very mild to where it is more like a lack of appetite. My main concern is not being able to sleep because I have a small child who did not get hep c (thank god) but I am having trouble keeping up with a toddler with no sleep , any suggestions?
What helped me the most for the first month was to do something physical which involves the mind every day. Along with more water than usual an increase in activity really helps to ease the stress. There is no doubt that Harvoni puts a slight stress on the system so like a child we need to burn off energy and increase the way in which the body metabolizes liquids and food.

I am well into the treatment and at first there is no doubt that Harvoni ramped up my system, there was an increase in blood pressure, renal functions and general system wide activity. So yes it can effect your sleep but if you are otherwise healthy you should be able to ramp up activity to help your system deal with ridding itself from the virus.

Be kind to yourself and the time will pass quickly. Don't forget that a child no matter how young, will always know there is something going on with their parent. So by simply being kind to yourself you are also being kind to your child. Do things that make you happy and the child will fully understand without a word being spoken.

Best wishes to you and your child and welcome to the forum.
Eric
   
Title: Re: Harvoni Side effects
Post by: kaemicha on March 27, 2015, 07:06:17 pm
Eric,

I read your reply to young 23 year old who's just started. I'm 2+ weeks in on Harvoni, and know virtually nothing about what's going on, what to expect or what might change.

Your reply filled me in on many questions I have/had and I just wanted to thank you. I'm pretty much alone on this one.

Again Thank you,
Michelle
Title: Re: Harvoni Side effects
Post by: SunIsOut on March 27, 2015, 08:12:08 pm
Had labs today should get all results next week but some came back in a few hours and posted on my portal page for John Hopkins.  Man have I been grumpy and sleepy the last few days and no good reason for it. I have a nice life, family, home job and cannot figure why I am so irritable. I will post full results next week. They did send me the complete blood count results where the red blood count is low and the Platelet was up to 51 from 49.
Title: Re: Harvoni Side effects
Post by: Katie on March 27, 2015, 08:54:04 pm
SunisOut:  If your body needs sleep, let it have it.  The more you follow what your body needs, the better you will do.  I know you know that but thought I'd remind you.   ;)  Your body is working hard for you so be nice to it. 

Good luck with your tests! 

Katie
Title: Re: Harvoni Side effects
Post by: Katie on March 27, 2015, 09:12:48 pm
Welcome to the new posters and Michelle, you are not alone!  We are all on this journey together.  If you have time read some of the history on this and other forums.  There is SO much information out there and we all have shared our experiences.  It is so helpful and reassuring.

Island Girl:  I wish I was there to give you a {{{{HUG}}}} in person.  Just hang in there and try to exercise and do things to pick up your spirits.  You don't have to do a complete workout but just take a walk in the park or around your yard.  Fresh air and birds singing always improve my mood.  Hopefully spring is happening for you as that is always good for the soul.  I can't remember where you are from.

Meg:  I am so sorry about that sinus infection from hell!  I've gone through it and it is so hard on everything.  The flushing of your sinuses with warm salt water really helps.  When I feel lousy, sometimes I forget do do what will help.  Hopefully it won't rear it's ugly head again but that may help.  If you or anyone you know has a tens unit, that can help relieve your neck pain.  I get that on occasion to where I can hardly breathe due to the pain and it does wonders.  You also might want to alternate ice with heat and always end with ice.  Just using heat can cause swelling.  You know I am not a doctor, but I have had years of joint, back, neck and shoulder issues, so am just mentioning what has helped me.  Please be better!

Lynn, glad you are improving and hope you enjoyed your birthday!

I have my bedroom in pretty good shape and my remodel was worth it in spite of all the pain, and mess but it is far from over yet.  Still have tons of stuff to sort through and of course lots of tools, paint & stain to put away, but I see progress!  I am just SO SLOW at doing everything and that's OK.  I am just getting antsy to go have some time to relax and dig in the dirt.

Thanks for all of the valuable info from everyone.  Have a great weekend and I always look forward to hearing what you are up to.  Take care and do what you need to do and we are all moving toward a Hep C free summer!  We are! :)

Katie

Title: Re: Harvoni Side effects
Post by: MEG on March 27, 2015, 10:48:08 pm
Thanks so much, @Katie. I've been doing the nasal rinses and *hopefully* they will help keep the bad bugs away. I've not wanted to spread negative energy, but it truly has been a sinusitis from hell, as you referred to it.  But all things pass....they always have, so far ;-)

Re;the shoulder/ arm pain. I'm doing heating pad and I know I should alternate the cold, but I get chills just thinking about a cold pak. Esp in winter, I even warm my water a little bit---sometimes a lot. Although my thyroid is fine on the dosage of synthroid I'm taking, I think my body still runs cold. I chill very easily. I will try though!


Islandgirl I'm sorry your spirit is feeling low right now. I think that in our quest to survive, get cured, keep our lives together that we forget how hard all this is---and has been for many years. My therapist reminds me to give myself a hug at times like yours. I'm Praying hard that you'll get news next week to make your heart and mind soar...

@Keanu
Quote
Natural Wellness has a product called Ultra Nourish. Is anyone else using that to help our livers regenerate and fight this while on treatment? I've been doing so but only 1/2 scoop mixed w cranberry juice every other day and 12 hours AFTER I take my Harvoni. Anyway, again I really appreciate you all for helping me out. I'm praying for everyone to whip this horrific beast. God bless!

I'll look up the Ultra Nourish. Truth is that I do not trust Mike Adams, the editor of the Natural Wellness website. He's too quick to make conclusions and tout products that you buy from him or his associates---not based on science---because he knows our vulnerability to do something, do what's best for this difficult disease. I'm not saying that everything he suggests is bad/ineffective, but I have a huge buyer beware mental note when I hear of his products...

You're doing fantastically, Keanu. Keep doing what you're doing. I don't think you need to add anything...

A peaceful nite and weekend to all....@Katie I'm looking forward to seeing pix of your garden!
Title: Re: Harvoni Side effects
Post by: Katie on March 27, 2015, 11:21:24 pm

Re;the shoulder/ arm pain. I'm doing heating pad and I know I should alternate the cold, but I get chills just thinking about a cold pak. Esp in winter, I even warm my water a little bit---sometimes a lot. Although my thyroid is fine on the dosage of synthroid I'm taking, I think my body still runs cold. I chill very easily. I will try though!


Meg, please try the ice packs.  Bundle up the rest of your body to stay warm and just put the ice where needed.  I think the relief (I hope) you feel will make it worth it.  Do this several times alternating with heat, take a break and do it again.  Let me know how it goes.

Feel better!

Katie
Title: Re: Harvoni Side effects
Post by: MEG on March 27, 2015, 11:37:22 pm
Ohhh-kayyyy, Katie. ;-)

Going to dig out my wool socks and blanket--bundle up and do it right now. How much time should I leave the respective paks on.

I actually really appreciate your pushing me on this, Katie. I have one on right now, bundled up and drinking hot tea...Thanks!
Title: Re: Harvoni Side effects
Post by: Keanu2015 on March 27, 2015, 11:46:12 pm
Hello Everyone!

    Meg thank you so much for the input on Ultranourish! lol I thought that question was a wash already! Great hearing from all you senior and not so senior posters! My dear friends you have all helped me so much already to this point. Michelle and Rayne... I sooooo agree with Katie! (Hi Katie!:) DEFINITELY go back a bunch of pages on this topic-- you can find some amazing Q&A. Just since I've been here 5 weeks I've learned so much! Rayne I wasn't as young as you at the time but I went through raising 2 kids single also. 16 months apart both in diapers just 8 years ago. I can totally relate! I agree with Eric... exercise as much as you can and drink a ton of water. For one, your body can flush more of the dying virus out. Secondly when you get that metabolism ramped up, coming down for rest periods will allow you to sleep more readily when you get the opportunities. A physical body that's being worked will welcome sleep when it gets the chance! The harder the better, but work your way up gradually to a goal. When I run I push harder to stay going no matter how ill or tired I feel. Then I drink like a fish right after. I do that every other day. As much as I can tolerate. My boys at 10 and 8 still require a lot of attention but no matter how tired I think I am I'll run at 9pm when theyre sleeping. Even if it's my last chance that day to keep my commitment to myself. It's my way of fighting the disease. I am running for my life. The dragon wants you to lay down and give up. We're not about that here! Get some!
God bless you all. Hope everyone is feeling well tonight! ~K
Title: Re: Harvoni Side effects
Post by: Katie on March 27, 2015, 11:49:23 pm
leave them on while they stay cold, or if you are actually using ice, probably 5-10 minutes and try to relax while you are doing it.  Don't frost bite yourself.  :)  If you don't have the gel packs to use, a bag of frozen peas in a towel works really well.

I'm PROUD of you!   ::)
Title: Re: Harvoni Side effects
Post by: MEG on March 27, 2015, 11:52:52 pm
Thanks for the reminder. I forgot how well frozen veggie bags work. They mold much better. I'm going to change it up next round.

It feels soothing...nice......
Title: Re: Harvoni Side effects
Post by: Keanu2015 on March 27, 2015, 11:58:36 pm
Hope you feel better Meg... thanks again!... Katie we'd be lost with out you :)

Good night everyone!
Title: Re: Harvoni Side effects
Post by: Katie on March 28, 2015, 12:03:10 am

It feels soothing...nice......

 :) ;) ;D 8)
Title: Re: Harvoni Side effects
Post by: Katie on March 28, 2015, 12:05:15 am
Hope you feel better Meg... thanks again!... Katie we'd be lost with out you :)

Good night everyone!

Awwww Thank you Keanu.  Sometimes I think I talk too much.  I just can't bear for someone, especially my friends here,  to be hurting if I have been there, done that!

Have a good evening and sleep like a baby!

Katie
Title: Re: Harvoni Side effects
Post by: rayne97 on March 28, 2015, 12:14:55 am

What helped me the most for the first month was to do something physical which involves the mind every day. Along with more water than usual an increase in activity really helps to ease the stress. There is no doubt that Harvoni puts a slight stress on the system so like a child we need to burn off energy and increase the way in which the body metabolizes liquids and food.

I am well into the treatment and at first there is no doubt that Harvoni ramped up my system, there was an increase in blood pressure, renal functions and general system wide activity. So yes it can effect your sleep but if you are otherwise healthy you should be able to ramp up activity to help your system deal with ridding itself from the virus.

Be kind to yourself and the time will pass quickly. Don't forget that a child no matter how young, will always know there is something going on with their parent. So by simply being kind to yourself you are also being kind to your child. Do things that make you happy and the child will fully understand without a word being spoken.

Best wishes to you and your child and welcome to the forum.



Thank you so much. I am staying positive, I feel very fortunate to be able to get this treatment. Just having a rocky start. I will start my workout again lol haven't felt up to it but I will try it out thank you again for the advice. I will let you know how it goes
Title: Re: Harvoni Side effects
Post by: kaemicha on March 28, 2015, 01:55:32 am
I don't know how to be active when I can't sleep and have no energy. Even when I sleep I'm exhausted the next day. I do have good days. I even had a good week but it's gone and back to normal.

I'm tentative to make plans or appointments in case I'm too tired or have muddled thinking. When that happens I get shaky and have to sit.

That's not how it is every day but this week, most days.  I'll be fine for a day or two then have a couple of days where I only last, energy wise, for a couple of hours. If I'm out and get tired I feel almost claustrophobic because I want to get home to lay down.

I want to get back to working out. Mildly, at first but I need to get moving - as soon as I feel better.
Title: Re: Harvoni Side effects
Post by: Lynn K on March 28, 2015, 02:12:22 am
They do say by doing exercise even just mild like walking will actually give you more energy and help you sleep better waking more refreshed the hard part is getting started when you are too tired so baby steps just move they also say exercise helps with having a better mood due to reducing depression which also gives more energy and improves sleep

Good luck
Title: Re: Harvoni Side effects
Post by: Katie on March 28, 2015, 02:27:58 am
Hey Michelle, I understand as I had terrible fatigue prior to treatment and 2 weeks on Harvoni (weeks 8 & 10) where I literally had to force myself to move.  My best times during the day, at that time, was between 11 & 2 so any appointments I needed to make or grocery shopping I would do it during that time.  Sometimes it was hard to get in the car and drive, but once I started it got better, and usually I was very happy to get back home and sometimes would cut my trip to town short, but I went and did what I needed to do.

  I found if I pushed myself, I would feel better, even if it was just some simple thing.  I made sure I did one chore a day plus anything else I could muster.  Laying in bed too much makes you weaker.  You kind of spiral down and inactivity causes rapid muscle loss which adds to the problem.

Lynn's advice is right on, and I encourage you to give it a try.

Be sure you are eating good, getting enough protein, and watch your sugar intake as low blood sugar can cause the shaky, weak feeling too and keep hydrated.  Very important.

Hang in there and I am sending you a big supportive {{{HUG}}}

Katie
Title: Re: Harvoni Side effects
Post by: kaemicha on March 28, 2015, 03:11:31 am
Hi Katie,
This is so helpful. As I said, I came here knowing virtually nothing. You all are giving me such useful information.
I do get around. I don’t want to atrophy! I have stairs and wear a fitbit to see how far I go/how may steps I take each day. So, I can be fairly active, most days anyway, but your advice on my forcing myself to get out and do what I need to, is most helpful at this point.  My concern about being out just started and I wasn’t sure if I should power through or wait until..? I’m not sure what or when. I agree with you about being out and getting things done is almost healing.
I have a big problem with hydrating but it’s too confusing to go into here. I’m not supposed to hydrate. Again, confusing and another time.
For now, Big Thanks! I needed to know that I have to push myself more.
Michelle
Title: Re: Harvoni Side effects
Post by: Islandgirl on March 28, 2015, 11:26:00 am
STILL UNDETECTED @ 1 MONTH POST 12 WK HARVONI TX!!!!!!!!!!!

Good morning everyone, and welcome to all our new Forum Family members too!  Thanks also for everyone's encouragement while I've been feeling so cr*%*y, Meg and Katie I couldn't do without you guys!  Physically I'm still not feeling great but emotionally - WOW such good news!  I was really frightened that I'd relapsed or something.

This morning I called the lab and found my results were in so went over and picked up copies - couldn't wait until next week

The Hep C viral load tests both still show me as NOT DETECTED!  Fantastic news!!!!!!!!!!!!

However, the other test re my blood work will need to be explained by the doc.  Most things looked within normal limits, but my platelet count is 124 which is abnormally low (140 to 400 range is where it should fall)  That may explain why I have easily exhausted energy...

Also, something called Eosinophil is abnormally high at 6 (normal range is 0 to 5 - so need to find out what that's about.  It's possible that these could be the aftermath of the Harvoni that destroyed the Hep C virus????  Anyway, the HCV is still undetected and I now anticipate it still being undetected in September - at which time I can say CURED!!

Hugs and healing energy for all of us!  ....Islandgirl

Title: Re: Harvoni Side effects
Post by: crazycanuck on March 28, 2015, 02:34:04 pm
I have been taking Harvoni now for 3 days and the fatigue and diarrhea is very intense.  Now I don't want to sound unappreciative of this miracle medicine but my Dr. only warned me of headaches. I tried the interferon, riboviron and incivek which I had to stop due to extreme side effects so I am not a stranger to these types of medicine. I am just hoping there is someone who can say "it was worth it and I am cured"!
Title: Re: Harvoni Side effects
Post by: crazycanuck on March 28, 2015, 02:41:18 pm
Hi all,
I'm Michelle and I'm also new to Harvoni. Two and 1/2 weeks ago. Last week I felt great and was so happy but this week I feel worse than before I started the Harvoni. I'm weak, dizzy can't sleep and have zero energy.

Until today, most of the Harvoni posts seemed to be so positive with no side affects but today I see others have problems and I think someone said they felt better 6 weeks in.

I'm supposed to go out tonight and need to get out but I'm just so shaky..but don't want to be housebound. I guess I'm just saying Hi, posting my problem and if anyone has any helpful information, I'd appreciate it. I'm so glad this forum is here!
I am in the exact same spot as you with the exception I am only 3 days into it with these side effects. I have to say I feel better at heart knowing there are people who are feeling the same way and it's not just me.  I'm told it gets better but I don't think there is enough data to prove this. Good luck!!!!!!!
Title: Re: Harvoni Side effects
Post by: Keanu2015 on March 28, 2015, 06:36:37 pm
Hi everyone!

     crazy canuck and others: I'm at 5 weeks. My first big jump in knowing I was experiencing greatness was at 1 week. My second was after 3. These were points that I KNEW Harvoni was not only winning the fight but making me feel better! As far as seeing the proof... my two week labs were astonishing to me. My 4 week labs were a miracle I'd been praying for for more than half my life now. Hope that inspires you to exercise more... drink way more and KNOW your day in the sun is coming! :) Hope everyone is well today! ~ K
Title: Re: Harvoni Side effects
Post by: Long_Haul on March 28, 2015, 08:03:42 pm
@Islandgirl, I knew some good news was coming your way, that I awesome news. We all want to hear that. Hopefully that will pick you up and out of the scary wait. I am doing a happy dance for you, and just so excited that you are well on your way to SVR. OH, and I'm jealous too ;D


Best wishes,

AL
Title: Re: Harvoni Side effects
Post by: MEG on March 28, 2015, 10:23:04 pm
@Islandgirl!!!!!

Yours is the best news I've heard all day! I can't tell you how thrilled I am for you!!!!!!

About your platelets---how do they compare now to the last time they were taken? Indeed, they may be making you more tired...

Eosinophils...they're a kind of a weird white blood cell. They fight infections but people with asthma can have high levels. Yours sounds just a hair above normal. 

I think that ridding ourselves of this infection creates havoc, in a sense, to all the systems that helped us survive the virus---they now don't have that job. If that makes sense...

You are UNDETECTABLE!!!!
Title: Re: Harvoni Side effects
Post by: MEG on March 28, 2015, 10:33:13 pm
Hi Michelle, I feel for you and your fatigue. I had severe fatigue upon diagnosis 20 years ago and it gradually got better---to the point where I could make plans and I knew how to pace myself.  Was even able to cycle(my favorite physical/spiritual activity)

But I'm back to ground zero and I can't blame it on the Harvoni. I've had a chronic cold/sinusitis since October and I'm finally clear of the infection, but the fatigue is awful...My activity consists of gentle walks with my dog and out doing errands---did a lot today and I am utterly exhausted.

What really depresses me? I've put on weight even though I am eating so healthy--- minimal carbs and lean proteins and vegetables are my staples...Not sure if it's the Harvoni or my metabolism tanking after 5 months of no aerobic activity...both? There's nothing more I can do re: my diet and so I'm working on acceptance of this different body that I'm seeing in the mirror. Knowing that this too shall pass.

I'm glad you found this board---people here are so warm and generous with their knowledge.

Sending you healing thoughts and yes, more energy!
Title: Re: Harvoni Side effects
Post by: Ruthie on March 28, 2015, 10:48:02 pm
STILL UNDETECTED @ 1 MONTH POST 12 WK HARVONI TX!!!!!!!!!!!

Good morning everyone, and welcome to all our new Forum Family members too!  Thanks also for everyone's encouragement while I've been feeling so cr*%*y, Meg and Katie I couldn't do without you guys!  Physically I'm still not feeling great but emotionally - WOW such good news!  I was really frightened that I'd relapsed or something.

This morning I called the lab and found my results were in so went over and picked up copies - couldn't wait until next week

The Hep C viral load tests both still show me as NOT DETECTED!  Fantastic news!!!!!!!!!!!!

However, the other test re my blood work will need to be explained by the doc.  Most things looked within normal limits, but my platelet count is 124 which is abnormally low (140 to 400 range is where it should fall)  That may explain why I have easily exhausted energy...

Also, something called Eosinophil is abnormally high at 6 (normal range is 0 to 5 - so need to find out what that's about.  It's possible that these could be the aftermath of the Harvoni that destroyed the Hep C virus????  Anyway, the HCV is still undetected and I now anticipate it still being undetected in September - at which time I can say CURED!!

Hugs and healing energy for all of us!  ....Islandgirl

Awesome news!!!

Don't worry about your platelets just yet, until you see your Dr. That's just the range that lab uses. My hematologist considers 100-400 to be normal. He was ecstatic when my count got to 118, after 4 weeks of iron infusions.
Title: Re: Harvoni Side effects
Post by: Islandgirl on March 28, 2015, 10:53:00 pm
Al and Meg, thanks!  It's a good kind of jealous that I totally get :)  We all want to be there so badly and it's so scary to worry that you're not.  Fear is not a word I associate with myself, but it sure fits what I was feeling.

Meg, my platelets on 12/17/14 were 135 and 8/29/14 (prior to starting Harvoni) platelets were 109.  I do think that's making me more tired and I expect most of this is just the aftermath of fighting off the dragon.  That's pretty much what Mike said in another post.  I'm praying that's what it is.  None of us need more stuff to deal with! 

Ruthie, I just read your post and it makes me feel SO much better.  Thanks!

Yes, BIG SMILE, I am undetectable!  Thank God!!  I want this for all of us!!!! 
  ....Islandgirl 8)
Title: Re: Harvoni Side effects
Post by: Ruthie on March 28, 2015, 11:02:43 pm
Hey, Islandgirl, I had to Google eosinophils LOL It's white blood cells. It just means your body is fighting something. The Mayo clinic (I think that's the one I read. IDK brain fog) says even simple things like seasonal allergies can cause them to elevate.

I'm glad I could help put you at ease a little about the platelets!
Title: Re: Harvoni Side effects
Post by: Islandgirl on March 28, 2015, 11:11:39 pm
Thank you, thank you!  You helped a lot, Ruthie!  Now to just get some energy back ;)  IG
Title: Re: Harvoni Side effects
Post by: MEG on March 28, 2015, 11:13:45 pm
Summer time is coming, Islandgirl and you are at the start line of FUN times!

Still sharing your joy...!
Title: Re: Harvoni Side effects
Post by: Islandgirl on March 28, 2015, 11:30:45 pm
Meg, I don't know what I'd do without all of you to share this with! 

Other people may care about me, but NO one can truly empathize or understand the way our Forum brothers and sisters do.  Thanks so much! 

We really mean it when we say we are there for each other, but we also understand each other like no one else can, and it's a happy day when one of us gets good news and a not so good day when one of us isn't doing so well.  Thru it all, we hang together! 

Thanks!  ....Islandgirl
Title: Re: Harvoni Side effects
Post by: MEG on March 28, 2015, 11:48:00 pm
Islandgirl: 
Quote
Other people may care about me, but NO one can truly empathize or understand the way our Forum brothers and sisters do.

Truer words.....I'm so grateful too....rest well, my dear.
Title: Re: Harvoni Side effects
Post by: coloradogirl on March 28, 2015, 11:58:46 pm
I am excited to hear the news you received, Island Girl!  Such a happy day for you!
Title: Re: Harvoni Side effects
Post by: kaemicha on March 29, 2015, 02:42:10 am
Hi Michelle, I feel for you and your fatigue. I had severe fatigue upon diagnosis 20 years ago and it gradually got better---to the point where I could make plans and I knew how to pace myself.  Was even able to cycle(my favorite physical/spiritual activity)

But I'm back to ground zero and I can't blame it on the Harvoni. I've had a chronic cold/sinusitis since October and I'm finally clear of the infection, but the fatigue is awful...My activity consists of gentle walks with my dog and out doing errands---did a lot today and I am utterly exhausted.

What really depresses me? I've put on weight even though I am eating so healthy--- minimal carbs and lean proteins and vegetables are my staples...Not sure if it's the Harvoni or my metabolism tanking after 5 months of no aerobic activity...both? There's nothing more I can do re: my diet and so I'm working on acceptance of this different body that I'm seeing in the mirror. Knowing that this too shall pass.

I'm glad you found this board---people here are so warm and generous with their knowledge.

Sending you healing thoughts and yes, more energy!

Thank you for sharing this with me, Meg. I feel so bad for you. I'm really hoping my fatigue and nausea will subside. Today, was a decent day but I did spend most of it in bed. When I got up I was energized. I'm thinking I'll pay tomorrow, unless I'm cured! I can be hopeful but I've got a few other things going on and when I finish my Harvoni, I'm not sure if .. well, it just seems there will be more to deal with.

I really hear you about the weight gain and no way to work it off.  I've also gained 5lbs. in spite of not being able to eat much. I was doing lunges, squats and crunches but even that got too much. Now, I just lift weights, when I remember. I've got to get some part of me healthy!

Sharing my story and hearing all of yours helps me immensely. Just the fact that I know I'm not alone, that I can share my progress and set backs with you all and you will understand - well, it's almost healing in itself.
Michelle
Title: Re: Harvoni Side effects
Post by: kate0b1 on March 29, 2015, 08:13:59 am
@islandgirl,  :-* :-* :-* :-* :-* :-* I'm sooo happy for you and like al maybe a little jealous  ;), i have 2 weeks till 4weeks post labs and i want to join you in the happy dance lol

kate
Title: Re: Harvoni Side effects
Post by: Islandgirl on March 29, 2015, 08:56:29 am
Kate and Coloradogirl, Thanks so much.  Can't blame you for feeling a little jealous, we're only human and the wait seems sooo long.... and when you get here you wonder if this can really be true :o

I'm ready and willing to share this happy dance :-*  Want us all to be able to join in!   Blessings and positive healing energy to all!  ....Islandgirl
Title: Re: Harvoni Side effects
Post by: Keanu2015 on March 29, 2015, 11:17:43 am
Hi everyone!

       Day 38, just started drinking regular coffee on Friday. I was off like a rocket for a couple of days. I drank a bit less of it yesterday though... too much! I must say, I noticed my liver seems to like it though. I thought I'd be hungover today w right upper quadrant pain- Nope. All this time I thought decaff was better for you! Anyway, I still ordered some healthy decaff from Coffee Bean. They process the caff out with water and Co2. Natural process- no wicked chemicals like Folgers. Caffeine changes "me" too much. Maybe TMI but I like sharing with you all what I"m thinking/doing in regards to this topic.
Island Girl that is such awesome news! I'm hoping I can someday graduate to your status!  :D
One other thing: For all of you who are struggling to find energy... Weights don't help me. I do that on days when I feel good. It's the cardio more than anything else that energizes me. You have to get your lungs heaving, sweat dripping and trying to catch up to your breath, but set a pace to sustain the motion for as long as you can. Running 15 minutes straight at 6.0 on my mill these days is hard to do but it sets me up for an awesome day and helps me sleep at night. I notice tiredness and headache (when it's with me) leaving my body at some point during the run. It doesn't seem logical when I'm moping around the house not able to do anything and just wanting to sleep that I'd be able to do this. I have proven that result will change EVERYTIME I force myself to run though it. That past proof is what drives me to crawl though the yuk again and get on my machine. You gotta try to know! Hope everyone is well today. Happy Sunday! K
Title: Re: Harvoni Side effects
Post by: Islandgirl on March 29, 2015, 11:33:35 am
Thanks Keanu, it is awesome news

I'll be waiting for you when you get here and we'll all dance the happy dance :-*  So glad you're doing well and taking care of yourself - thanks for all the great info!   ....Islandgirl 8)
Title: Re: Harvoni Side effects
Post by: Davidlm1 on March 29, 2015, 01:46:19 pm
Hi.  I have had hep C for many years and didn't get diagnosed until after I insisted the doctor test me.  I had a serious breakdown of fatigue, nausea and had no idea where it came from.  Had this before but never like this.  The doctor (and another specialist after this) told me it wasn't possible for hep C to cause these symptoms.  After insisting I be tested, sure enough, the results came back positive with a viral load of over 3 million.  My load has gone up over 4 million and I have now developed cirrhosis.  The insurance, with a little foot dragging, approved me for the medication.  I have been on Harvoni for 3 weeks now and still having a lot of effects from it.  When first starting it I think I had a touch of the flu so was holding off on what were symptoms from that and what were side effects from the medication.  I am continuing to have nausea and some liver pain, along with what I would call bouts of fatigue though am also having some periods of energy I haven't felt for some time.  Very committed to following through with the entire regimen as the outcome is worth it if I can get rid of this disease.  Trying to stay flushed and taking care of myself as best I can.  Getting ready for my first blood test since starting it and looking forward to the results.  Will just encourage those with side effects to focus on the long term benefit vs the short term side effects.  Thanks, D
Title: Re: Harvoni Side effects
Post by: MEG on March 29, 2015, 01:57:44 pm
Hi Michelle,

You're gaining weight too. Oy--now I'm glad I'm not alone. Indeed, we do need each other on this journey.

Do the best you can and that's really all we can do---knowing that this is all temporary and that we'll deal with comes next---joyful or sorrowful with the same determination and guts that got us here...

@Keanu

Ya, I'm glad you reinforced the decaf and how it's processed with chemicals. I went to organic years ago when I learned of the caustic materials Folgers, et. al. use...Caffeine makes me very jumpy and anxious. Can't do it..

Keanu and all  Re: the fatigue. I think that those of you who didn't have much of it before Harvoni are in a different place, so to speak.

Speaking for myself, I basically had classic Chronic Fatigue Syndrome---except that they knew it was coming from the HepC....

There is some fatigue--and only the person having it---can know, with trial and error, what works. Over the years, I experimented with all kinds of exercise and activity regimens.

Sometimes it's unhealthy, makes it exponentially worse to "push through it." Because it's not fatigue caused by normal stressors....It's the body's immune system that's exhausted.

Other times, getting up, and even though very tired, to do gentle movements like a walk, some housework, etc. do help----with the proviso that one then rests even if you feel like you can go further....I didn't listen to this yesterday---kept going since I had the energy(this is errands only--no strenuous exercise) and I'm paying for it dearly today...

I'm trying to point out that the fatigue that we all experience can come from a different cause and therefore how to deal with it needs to be different---and only trial and error can help us find the right balance..

Sending everyone strength, hope and resolve!
Title: Re: Harvoni Side effects
Post by: MEG on March 29, 2015, 02:09:42 pm
Quote
Sometimes it's unhealthy, makes it exponentially worse to "push through it." Because it's not fatigue caused by normal stressors....It's the body's immune system that's exhausted.

To clarify, it's the body's immune system that is exhausted which leads to a cascade of biochemical reactions in every system of our body----that for some people results in fatigue that can't be pushed through. My only "medicine" has been rest when I reach that point. No diet changes nor supplements---nothing---helps when I need to rest.   And then getting back up and gently moving again....

I can't wait for this aspect to heal...it truly has been a burdensome cross to bear for all these years. I never look as awful as I feel and have been disbelieved by countless people and now gaining weight--oy vay.
Title: Re: Harvoni Side effects
Post by: Islandgirl on March 29, 2015, 02:15:54 pm
Welcome David

You are so right, it's totally worth whatever it takes.  We'll be looking forward to seeing your lab results post and cheering you on :)

@Meg/Michelle, while still on treatment I lost about 8 pounds without trying, however, it all came right back, also without changing anything!  Now, I want it back off!!! 

Determination & guts, positive thought, healing energy - my wishes for us all!  You're so right about that determination and guts, MEG!  Hugs,  ...Islandgirl
Title: Re: Harvoni Side effects
Post by: Davidlm1 on March 29, 2015, 02:23:28 pm
My doctor said something about losing weight on the medication for some reason, they aren't sure exactly why, and that the weight stays off.  I have found myself with a bigger appetite than I have had in awhile.  Have also lost about 10 lbs!  Not a bad side effect there, is it!
Title: Re: Harvoni Side effects
Post by: MEG on March 29, 2015, 02:43:40 pm
I'm so jealous you two lost weight!! @Islandgirl and @David.

Sheesh.....................

;-)

I'm going to sue Gilead.
;-)
Title: Re: Harvoni Side effects
Post by: MEG on March 29, 2015, 02:46:50 pm
Welcome David,

I agree with you and Islandgirl. We do what it takes, keeping the eyes no the prize at all times. It's when I get distracted away that my worry thoughts multiply like the the virus..

There is a wealth of information and caring here....

It sounds like you're already seeing some improvement when you describe the bouts of energy you've not experienced in a long time.....

Keep us posted and ask anything. Someone here will know the answer or be able to point you to where to look...
Title: Re: Harvoni Side effects
Post by: Keanu2015 on March 29, 2015, 03:00:33 pm
Hi Everyone,

         Meg/friends check out Dean Martens. This one is great watch it through. If you view all of his clips you'll be quite amazed. The discipline is tough but along with what Harvoni has done for us I believe we now have the power within us to reverse damage and gain unlimited amounts of energy and abundant health. I was all in a few years ago and I beat Lyme disease (with his philosophical help mainly- juicing, exercising, etc.). I did buy a couple of their products as well which worked for me but I am not promoting that here. I just want you to hear his seminar. Oh and THEN buy a juicer if you don't have one! lol ;)  https://www.youtube.com/watch?v=er-5X7gp5uw  Hope everyone is feeling well today! ~ K
Title: Re: Harvoni Side effects
Post by: MEG on March 29, 2015, 03:06:41 pm
Thanks Keanu...I've had a juicer and the last few years a Vitamix....

 I can't juice/blend in the winter----the chills of cool or even room temp liquids in the winter has always been a problem.  I've had a continuous pot of soup going all winter long.Seriously, since October! Got a fresh pot right now going..;-)

Can't wait for the weather to heat up and let me get back to blending!
Title: Re: Harvoni Side effects
Post by: Keanu2015 on March 29, 2015, 03:27:59 pm
That's great Meg! Btw I did want to take back something I wrote. I was never actually "all in" with the discipline Dean Martens describes. I actually still ate a few things he says to eliminate such as red meats. I did eat "live veggies" and wheat grass though. I used the juicer religiously. I maintained a good part of what I learned from him for 6 months while I was on meds for Lyme disease and beat it. My scientific prognosis wasn't great. I think if I could have ever gone "all in" for even a year I may not have even hung on to my Hep C. I believe in the things he is teaching that strongly. When our systems are in balance there is nothing stronger that man can develop for fighting illness. Unfortunately I love red meat on occasion so I'll never be all the way capable of following his discipline 100%. Even so I feel great following a lot of it again along with my Harvoni!
Title: Re: Harvoni Side effects
Post by: Islandgirl on March 29, 2015, 04:01:17 pm
I'm a Vita-mix girl too, and right now am into green smoothies -  and I usually have a pot of soup going too ;D  I like to freeze my soups so I can grab a container when I'm not up to cooking :)

My 91 year old mom finds a healthy soup or smoothie easiest to eat and digest.  She is unable to chew salad well so I make up her salad in the Vita mix and she's all set (I can also put extra veggies in it this way that she would probably refuse otherwise... sneaky! lol)  I try to keep both of us eating healthy most of the time, but she will eat dessert first when she can ;)  Thanks for the link, Keanu, the food combining isn't something that I've ever been able to make work for me.  Especially with more people to cook for (off and on) than just mom and me.  When my LT boyfriend and his almost 17 year old son are here, all bets are off ;)  ...Islandgirl 8)
Title: Re: Harvoni Side effects
Post by: Keanu2015 on March 29, 2015, 05:04:15 pm
This clip gives you a good understanding of how to eat "energy"
https://www.youtube.com/watch?v=2KTXTvDwaVM
Title: Re: Harvoni Side effects
Post by: Keanu2015 on March 29, 2015, 05:08:18 pm
Hi Island girl!
So you have actually tried that? I never did. I just ordered the book "fit for life"  that he says to buy. He suggests many more. I have a few others but this one describes how to do it (food combining). So glad your mom is still with us! 91 is impressive :)

Hope everyone is well!
Title: Re: Harvoni Side effects
Post by: Islandgirl on March 29, 2015, 05:18:29 pm
Thanks!

Mom is actually in better health now than when she came to live with me - now going on 7 years :)  She has plenty of things that can't be "fixed" and cannot live alone any more, but she's doing pretty well all things considered!  Good luck with the food combining if you try it 8)  IG
Title: Re: Harvoni Side effects
Post by: Bituman on March 29, 2015, 06:21:13 pm
Hi Michelle,

Sometimes it's unhealthy, makes it exponentially worse to "push through it." Because it's not fatigue caused by normal stressors....It's the body's immune system that's exhausted.


Hi Meg,

I am one of those that tries to "push through" episodes of fatigue by working out, yardwork, or just generally staying busy.  Most of the time this works and I feel better afterwards. But sometimes it doesn't work and I continue to feel the same fatigue or even worse.  Oddly these episodes are almost always accompanied by insomnia, which to me doesn't make sense.  So how can I tell when it is okay to push through fatigue versus backing off?  What I have learned is that if I'm feeling tired and my resting heart rate is elevated, say 10 bpm over normal, then I know I need to rest and shouldn't try to just push through the fatigue.  By rest, I really mean doing nothing, no going shopping, no going to the office, no installing a ceiling fan, no painting the garage, nothing.  But it took me a lot of years to figure out that I sometimes need to back off a bit.  At least this has been my experience. 

Bob

Title: Re: Harvoni Side effects
Post by: SunIsOut on March 29, 2015, 07:20:13 pm
Hi Meg,

I am one of those that tries to "push through" episodes of fatigue by working out, yardwork, or just generally staying busy.  Most of the time this works and I feel better afterwards. But sometimes it doesn't work and I continue to feel the same fatigue or even worse.  Oddly these episodes are almost always accompanied by insomnia, which to me doesn't make sense.  So how can I tell when it is okay to push through fatigue versus backing off?  What I have learned is that if I'm feeling tired and my resting heart rate is elevated, say 10 bpm over normal, then I know I need to rest and shouldn't try to just push through the fatigue.  By rest, I really mean doing nothing, no going shopping, no going to the office, no installing a ceiling fan, no painting the garage, nothing.  But it took me a lot of years to figure out that I sometimes need to back off a bit.  At least this has been my experience. 

Bob

I have been pushing myself a little too. I repainted the kitchen, dining and all the trim, installed new Dishwasher the last couple of weeks.  Today It was about 43 outside so I pruned the roses, spread the milk-spore, spot treated the weeds and raked the backyard to get the last red-gum balls.   It took about 5 hours and I am tired but really glad I got out there!  I have a lot of yard stuff to go with Deck paint, gazebo paint, pier touch up, tidy the spade trenches along the garden beds.  Then I get to get started on the sailboat.  :)

I should get my 4 week labs back this week and will post it!
Title: Re: Harvoni Side effects
Post by: Kathy C on March 29, 2015, 08:00:25 pm
I am now on day 39 with Harvoni,
  Not feeling great! I have been through 2 diff treatments for H-Phylori and I think I may have it again, same symptoms that I experenced before with H-Phylori.
I wonder if anyone else has experienced having H-Phylori while on Harvoni???
I may call the Speclities pharmacy where I get my Harvoni medication from and talk to a pharmacy person about it.
I also just finished 10 days of antibiotics for a sinus infection, still am coughing a lot and a constant need to blow my nose.
  Any one having the same problem? Please share.
Best of luck to everyone.   Kathy
 
Title: Re: Harvoni Side effects
Post by: MEG on March 29, 2015, 11:57:04 pm
@Keanu and @Islandgirl

Chuckles...I couldn't live without my Vitamix ;-)  It's definitely an acquired taste to drink blended greens without adding lots of fruit. I began doing the latter, lots of fruit and then backing off. I now actually like the grassy taste...Go figure!

Keanu, I'd not known about Dean. I'll watch the link you posted. I spent the day resting, laying low. Drinking water, soups...Felt a potential sinusitis relapse coming on.....feeling better this evening, thank God.

I need to eat red meats too, Keanu. I have tried vegetarianism and it doesn't work for me. Because of the cost of pastured/organically fed chicken, beef, I eat less often than when I was younger. Every time I've cut it completely out, my fatigue has worsened....I've read that some folk's DNA is such that they physically need the animal protein...

I love talking and comparing notes on nutrition. Keep the ideas coming!

Bless your mom, Islandgirl. I'm sure your feeding her all that good stuff has helped her.
Title: Re: Harvoni Side effects
Post by: Islandgirl on March 30, 2015, 12:21:32 am
Thanks :)  Mom and I have adjusted pretty well to living together (thank goodness) but it's strange to feel that I'm sort of the "parent" now.  Man, do my brother and his wife owe me lol.  I never dreamed what a tremendous responsibility it would be.  I do it willingly and am grateful to still have her, but it's sure more complicated than I realized it would be.  Gotta stay well and keep a good sense of humor ;D

For my "green" I usually put lots of fruit too.  Sometimes dry oatmeal, extra virgin cold pressed coconut oil (1 Tbs for 16 oz smoothie) almonds that I soak overnight in spring water and add the water to any liquid in the smoothie, a whole green apple; banana, all sorts of tropical fruit...  I'm still experimenting with greens and like spinach or baby kale (have to watch giving mom too much kale - it's a good clean-you-out lol)  Check out simplegreensmoothies.com  for some great ideas.

Bed for me - sleep well and feel well - hugs  ...Islandgirl 8)
Title: Re: Harvoni Side effects
Post by: MEG on March 30, 2015, 12:23:32 am
@Bitumen/Bob.

Quote
But sometimes it doesn't work and I continue to feel the same fatigue or even worse.  Oddly these episodes are almost always accompanied by insomnia, which to me doesn't make sense.

I can't explain the physiology(too tired right now) but indeed, when I overdo it, I can be so tired and cannot sleep. And of course, that makes the fatigue worse the following day. Sometimes I'll take an atarax(antihistamine) to help me sleep and break that cycle.

As you've done, we constantly have to be aware of our body sensations, vital signs and take into account: what have we eaten lately? Have we hydrated enough? Getting enough veggies?(minerals, until recently, have been under-appreciated with all the focus being on vitamins in the nutritional field). What activities have we done and what effect does a particular activity have on us?

ADD: very importantly and I know we all know this, what kind of psychological stress is in our lives?

I'm recalling right now that several years ago I became involved with a man that lived an 8 hour car drive away---I was incredibly happy---but relapsed myself to profound fatigue for weeks because of  over-doing it by doing that long drive to see him. Even when it was his turn to come see me, we squeezed in so many activities.  It was this experience that affirmed for me that my fatigue was surely a physiologic issue and my emotions may or may not be the problem.  And surely were not the sole reason.

It's so hard to make generalizations beyond the above for people with HepC because there's such a wide spectrum of the levels of fatigue different people have.

With me, fatigue, frequent sinusitis were the symptoms that came on first.....I recall, in between sinus infections and not experiencing feeling better---I was quite athletic----power walking, cycling and working 12 hour shifts in a busy PICU and ER.....I did nutritional consultations, even went vegetarian, boosted my water intake, exercised even harder----to no avail.

I had the classic symptoms of Chronic Fatigue Syndrome(CFS)---but for the hcv virus being recently "discovered," that's the diagnosis I would have had for years.

I spent lots of time on the Chronic Fatigue Forums for years because it's with that patient population that I had the most in common since biopsy showed I had just a mildly inflamed liver and my LFT's were only somewhat elevated and low viral loads---and the profound fatigue, flu-like symptoms. I met hcv patients at the support groups that had much worse liver disease but very little to no fatigue. It puzzled me then and it still does now...How can this be? My doctor doesn't have an answer for this.

I learned a lot about managing my fatigue from the CFS boards....it's the reason I piped in last nite about it...that indeed it's different for all of us---its causes, etc...Now that we're older, cardiac issues need to be explored if we have fatigue of unknown causes. Anemia, on and on....Oy vay. ;-)

Bottom line, Bob, as we agree---it's about becoming watchmen for our bodies and looking for patterns, eating and drinking as well as we can. 85-90/10 has been my rule for years. Harvoni therapy has made me go 100% all in re: my food/fluid intake. I've never in my life eaten this cleanly and well, consistently-- I'm entering my 9th week.   Dear God please let it pay off.

Keep on cycling! I can't wait to announce my first bike ride of the season...
Title: Re: Harvoni Side effects
Post by: Islandgirl on March 30, 2015, 11:03:11 am
Hi Meg, first, YES - it's gonna pay off!

In reading your post, you describe much of my own history- chronic sinus and fatigue issues, then and now.  Years ago all they could come up with was that I "might" have Chronic Fatigue Syndrome.  Some years later, they thought, but weren't sure, that I might have hep, but not A or B ("C" wasn't known or named back then) - or back to the CFS possibility.  Many years after that, I donated blood at work for their blood drive and got a nice registered letter that I had the antibody to hep c.  Best we figured out was that I got it during a blood transfusion (6 units) when a surgical stitch gave way too soon and every time they got the bleeding stopped, it began again. 

I still have the sinus issues and intermittent fatigue...  I'm hoping that those will improve or disappear as I continue the healing process post Harvoni tx.  Sounds like you are doing a great job taking care of yourself.  As you've said, and I believe, we have to listen to our bodies and assess what's going on in our world.

BTW, my long term (15 years) boyfriend is about 8 hours from me - he makes all the trips here.  We used to be in the same industry and traveled extensively, much of it in the same areas so it was fairly easy.  Now, he's teaching electrical trades as a second career and trying to stay 2 more years so he can keep the benefits.  He and his almost 17 year old son spend all Holidays, Spring Break and the summer here so we probably have more time together now than when we were traveling for business. 

As a side note, we decided he should be tested for hep c, particularly since he had a couple of surgeries as a boy when his father was stationed in Peru.  Just got the results and he is A-OK and emailed me the report to put in my med files.  As my doc and I discussed, then he and I discussed, there was little likelihood that he was infected but he did have medical procedures prior to mandatory screening, or anyone even knowing about hep c.  Just covering all bases to make sure I remain UND :) and he stays hep c free :)  I've read that several couples on the forum periodically test to be sure the non hep c partner is still ok; just makes sense.  Fortunately, I've never read where the non hep c partner ever tested positive for the virus!  Keep taking good care of yourself and feel a hug ...Islandgirl
Title: Re: Harvoni Side effects
Post by: dragonslayer on March 30, 2015, 01:09:52 pm
Hi everyone,

A liver biopsy is not all that conclusive and relies on random samples of the liver that might be right or not.  The new alternative is Fibroscan that is comprehensive and accurate without being invasive.

I would not rush on a new biopsy before you give the liver a chance to regenerate as well.  Here is an article on the Fibroscan.

http://www.henryford.com/body.cfm?id=46335&action=detail&ref=1993 (http://www.henryford.com/body.cfm?id=46335&action=detail&ref=1993)

Something to consider.  For me my blood platelets were so low that they had to do a transjugular biopsy so if I began to bleed I would bleed back into the vein.  I had an infection from the injection at my neck and do not see myself repeating this procedure.

I go for my labs this Friday as they pushed my appointment out a week and I am on my second bottle now.

Take care all!

Fibroscan is fine for certain conditions.. It appears to be very accurate at measuring cirrhosis.  However it's accuracy suffers when dealing with fibrosis in the mid range.  As a confirmation for cirrhosis, fine.. But as for accurate staging in the F1-F3 areas, the biopsy is still the gold standard... There have been many threads on several of these Hepmag forums by global mods that refer to this.. In addition, Fibroscan is not recommended for those with ascites, morbid obesity and/or large amounts of chest wall adiposity.   Henryford.com is singing its unmitigated praises, no doubt, because their locations have  become the first in their area to have implemented it, and, therefore, have a keen interest in marketing it as effectively as possible.

Im not condemning it; just stating that, in the mid ranges of staging, the Biopsy is still preferred.
Title: Re: Harvoni Side effects
Post by: crazycanuck on March 30, 2015, 01:25:41 pm
Hi everyone!

     crazy canuck and others: I'm at 5 weeks. My first big jump in knowing I was experiencing greatness was at 1 week. My second was after 3. These were points that I KNEW Harvoni was not only winning the fight but making me feel better! As far as seeing the proof... my two week labs were astonishing to me. My 4 week labs were a miracle I'd been praying for for more than half my life now. Hope that inspires you to exercise more... drink way more and KNOW your day in the sun is coming! :) Hope everyone is well today! ~ K
Thank you very much Keanu2015 for your post! It gives me hope!
Title: Re: Harvoni Side effects
Post by: SunIsOut on March 30, 2015, 01:31:49 pm
Fibroscan is fine for certain conditions.. It appears to be very accurate at measuring cirrhosis.  However it's accuracy suffers when dealing with fibrosis in the mid range.  As a confirmation for cirrhosis, fine.. But as for accurate staging in the F1-F3 areas, the biopsy is still the gold standard... There have been many threads on several of these Hepmag forums by global mods that refer to this.. In addition, Fibroscan is not recommended for those with ascites, morbid obesity and/or large amounts of chest wall adiposity.   Henryford.com is singing its unmitigated praises, no doubt, because their locations have  become the first in their area to have implemented it, and, therefore, have a keen interest in marketing it as effectively as possible.

Im not condemning it; just stating that, in the mid ranges of staging, the Biopsy is still preferred.

Good information. Thanks.
Title: Re: Harvoni Side effects
Post by: Islandgirl on March 30, 2015, 01:48:39 pm
Hi Dragonslayer,

Thanks for the information.  What about Fibrosure, which I think is a blood test?  I'd like to do another test to see where I am now, but would prefer it to not be invasive like my biopsy was.  Do you know about these?  Or does someone?

@ (you) crazycanuck ;)  just wanted to know I'm thinking of you and sending you positive thoughts and prayers that you do well through treatment and will soon be able to see the day that you know it was all worth it and you will be doing the "I'm cured, Happy Dance".  Hang in there!  ...Islandgirl
Title: Re: Harvoni Side effects
Post by: dragonslayer on March 30, 2015, 01:58:03 pm
Hi Dragonslayer,

Thanks for the information.  What about Fibrosure, which I think is a blood test?  I'd like to do another test to see where I am now, but would prefer it to not be invasive like my biopsy was.  Do you know about these?  Or does someone?


From here:

http://www.hepatitisc.uw.edu/go/evaluation-staging-monitoring/evaluation-staging/core-concept/all

I found this:

"Liver biopsy continues to be the gold standard for diagnosing other causes of liver disease and establishing severity of fibrosis.
Noninvasive serum markers used show clinical utility in predicting presence or absence of significant fibrosis/cirrhosis, but are not useful in differentiating between intermediate stages of fibrosis; these markers may serve as good clinical alternatives in patients who are not candidates for liver biopsy."

So  it sounds like Fibrosure is like Fibroscan in that its strength is in identifying cirrhosis fairly accurately, but suffers in staging the mid range.
Title: Re: Harvoni Side effects
Post by: Islandgirl on March 30, 2015, 02:08:10 pm
Well, shoot!  Looks like to be satisfied, I'd wind up feeling that I still needed a biopsy to be sure of anything past what the fibrosure/scan revealed.  I'm too picky to not get to the very bottom of something ;)  Thanks Paul.

...Islandgirl 8)
Title: Re: Harvoni Side effects (memory loss)
Post by: hc on March 30, 2015, 02:22:22 pm
I just joined this forum in order to find out if anyone can offer insight based on experience with Harvoni side effects to help my family understand what is happening with my mom--specifically, sudden onset of memory loss. She has had Hepatitis C for many decades, is in her early 80s, and started Harvoni treatment in January. She has several other medical conditions for which she takes medication, including medicine to shrink a pituitary tumor.

In the last couple of weeks, toward the end of the Harvoni 12-week cycle, my mom experienced congestive heart failure and was put on oxygen. This past week, while her oxygen levels improved and she was able to stop the oxygen tank, she began to experience serious confusion and memory loss and symptoms that present like dementia. Testing revealed a kidney problem, so her doctor took her off the Harvoni with 6 pills remaining. The kidney problem has resolved itself, but my mom's memory has not returned. In addition to bloodwork, she has had an MRI, a spinal tap, and is going for an EEG this week. Doctors do not know the cause of the sudden memory loss as yet.

We are wondering if her sudden memory loss could be either a side effect of Harvoni, a side effect of the combination of Harvoni and one of the other medicines that she is taking, the result of a possible mistake in her dosage due to confusion on her part, or ???? If you have had or know of anyone who has had memory loss while taking Harvoni, please reply.
Title: Re: Harvoni Side effects
Post by: dragonslayer on March 30, 2015, 02:48:20 pm
>> HC, the doctors would be the best judge of what is causing her apparent dementia.  However, I havent come across any information indicating that Harvoni would be responsible for this condition...  Without knowing the condition of your mom's liver, its hard to know whats causing it, however, in instances of cirrhosis, a symptom called 'brain fog' occurs in some patients due to ammonia build up in the blood from the impaired liver.  My mom has had dementia from her early 80s  and she never had HCV; most likely is Alzheimers in my mom's case... That would also be a suspect.  In addition, Ive read where renal impairment can cause symptoms like this... Again, we're not doctors here, but have done a fair amount of research on subject such as this...  The doctor is the place to go for more definitive diagnosis.. Hope your mom feels better..

>>Island Girl, I understand your reluctance to get a biopsy.. Ive had 2.. The first was accompanied with significant pain, as the only anesthesia I got was a local injected ahead of the biopsy needle.  The second was a picnic; my doctor injected a little fentanyl along with a mild sedative.. I was awake completely but felt Zero discomfort.  So experiences vary.  If you want to rule in or out cirrhosis, I think the non invasive tools are good.. I would like to keep tabs of my liver condition as well now that treatment is over.   And Id like to use Fibroscan to make sure Im not approaching cirrhosis.. However, my two biopsies scored me in the Stage 0-1 range, and the last thing I want is a Fibroscan, the inaccuracies of which are well known in the mid range, to mistakenly score me an F2, or F3 instead of an F-1, if thats what I really am....   
Title: Re: Harvoni Side effects
Post by: SIXFOOTFOUR on March 30, 2015, 02:57:04 pm
Hi HC

Sorry to hear of your mothers problems.

Im not a MD, but am on Harvoni, appox 30yr Hep C +, and I am in Health Care as a Respiratory Therapist (20 yr now in neonatal care). Often there are long or short term memory loss associated with hypoxic episodes caused by any number of pulmonary problems -CHF-COPD etc. Since I have not read anywhere about Harvoni and memory loss Id look at the cause and need for O2 and how low was her Pa02 before she was treated. Is she now stable with O2 and has any of the memory improved?

Title: Re: Harvoni Side effects
Post by: Trenz on March 30, 2015, 03:12:51 pm
hc. I don't know if its pertinent, but I had sudden memory loss and then Hepatic Encephalopathy a couple of months ago, at the end of treatment with Solvaldi/ribavirin/interferon. My memory has returned and I've been taking Harvoni and riba the last 6wks, no memory loss, just fatigue. I think everyone processes these powerful drugs differently and add in the factor that most of us are taking meds for other maladies and just about any side effect is possible. I'll say a prayer for you and your mom
Title: Re: Harvoni Side effects
Post by: pumpkin50 on March 30, 2015, 03:20:20 pm
I don't know how to be active when I can't sleep and have no energy. Even when I sleep I'm exhausted the next day. I do have good days. I even had a good week but it's gone and back to normal.

I'm tentative to make plans or appointments in case I'm too tired or have muddled thinking. When that happens I get shaky and have to sit.

That's not how it is every day but this week, most days.  I'll be fine for a day or two then have a couple of days where I only last, energy wise, for a couple of hours. If I'm out and get tired I feel almost claustrophobic because I want to get home to lay down.

I want to get back to working out. Mildly, at first but I need to get moving - as soon as I feel better.
[/quote




Yes this is exactly how I feel and its horrible!!  Today marks 2 weeks on Harvoni and I have been very fortunate to not have any symptoms and am actually sleeping better without the help of Benadryl as before.. But my baseline exhaustion (even when I sleep well) and the most days than not feeling like I have a hangover (without the headache ) is very difficult!  I do have some good days but only 1 last week which was Friday and all the rest have been exhaustion and yes I relate to it being difficult to make appts and make plans as you never know how you are going to feel!  I have found that trying not to do too much in 1 day helps so pacing myself and also getting outdoors in the fresh air helps or mabey a walk.  Last friday I felt good and I went to the gym and after my workout I sat in the steam room for 20 minutes which was glorious,, But today I can hardly walk to the bathroom!! I am going to force myself to get up and go outside and make sure to eat well and drink water and hopefully tomorrow will be a better day!!  Great day to you all!!
Title: Re: Harvoni Side effects
Post by: kaemicha on March 30, 2015, 03:29:45 pm
I'm so jealous you two lost weight!! @Islandgirl and @David.

Sheesh.....................

;-)

I'm going to sue Gilead.
;-)

LOL at Meg. Thank you for the laugh! I have a day that I have to 'push through' being tired and I am exhausted but these-three appointments this week non-medical related. I've been waking up early for no apparent reason which, of course, makes me even more tired. Off to the real world when I just want to go back to bed!
Title: Re: Harvoni Side effects
Post by: hc on March 30, 2015, 03:34:00 pm
Thanks so much for your replies. Doctors have been testing my mom and do not have an answer for us regarding the memory loss, which is why I am posting here. The hepatitis C has progressed very slowly in her case and her liver is still fairly healthy, however, I am aware of the condition "brain fog" and she has had symptoms that correspond with that condition for awhile. My mom was taken off the oxygen tank last week because her oxygen levels had sufficiently improved. However, her memory problem and confusion became dramatically worse after the oxygen problem. I don't know whether her oxygen levels have been measured again since then--we live in different cities. I will try to find out.
Title: Re: Harvoni Side effects
Post by: TTSP on March 31, 2015, 11:13:34 am
Thanks Paul,
Your interpretation on the subject of biopsy to Fibroscan is the same as mine. I continue to look for more info on the subject. I don't like to buy into one stream of information either.

To all, hang in there. And best wishes.  8)

Title: Re: Harvoni Side effects
Post by: EleanorB on March 31, 2015, 02:59:02 pm
Just weighing in again on the side effects for those starting out: I am on week 3 of Harvoni

The nausea and dizziness were really bad at first, now they come in waves, but somewhat better - usually in the 2-3 hours post taking the meds.
Same with the headache
The rash on my lower limbs (both arms and legs) came and went.

Drinking lots really helps, pushing through is an option (or not - when I am on the job there is no rest), but probably better to take it easy in terms of letting your body heal.

I am at a viral load of 150,000 after 2 weeks after 530,000 at baseline, so I guess I am responding, but had actually hoped for it to go a bit faster. Patience, grasshopper! and hold your thumbs for good luck.
Title: Re: Harvoni Side effects
Post by: SunIsOut on March 31, 2015, 03:49:50 pm
Hi everyone, I have all my labs from the week 4 tests.  I asked them to add Vitamin D as I read on here that some had lower levels.  Mine were low and they put me on a one pill a week supplement.  My blood platelets are still at the ALERT level of 51 and almost UD for the viral load.  Here is my before treatment started and 4 weeks later tests.

(https://farm8.staticflickr.com/7591/16372105434_0a21674d25_z_d.jpg)
Title: Re: Harvoni Side effects
Post by: EleanorB on March 31, 2015, 04:15:31 pm
@ sunisout

What a great drop in viral load and ALT/AST! Congratulations, you are on your way!
Title: Re: Harvoni Side effects
Post by: SunIsOut on March 31, 2015, 04:17:38 pm
@ sunisout

What a great drop in viral load and ALT/AST! Congratulations, you are on your way!

Thank you!  I just added some data and replaced the chart with the log and standard range.  Yes, this is such a great treatment.  I have zero health issues besides this and  consider myself very fortunate.  :)
Title: Re: Harvoni Side effects
Post by: dragonslayer on March 31, 2015, 04:22:31 pm
Sun, Nice results on the viral load and liver enzymes.. Just curious; whats going on with your Glucose?  You go from Above normal to Below normal.   
Title: Re: Harvoni Side effects
Post by: SunIsOut on March 31, 2015, 04:30:33 pm
I took the labs in the morning before eating and I think it is a time of day thing where they were not worried. The Vit D was way low but I did not want to take an average supplement as it can cause kidney stones if you take too much so I am letting them prescribe that.

The big one is blood platelets as that is a sign from cirrhosis where the blood cannot fully flow through the liver and enlarges the spleen.  I am hoping the Serrapeptase enzyme is going to help that and will have to watch it. I bruise easy and bleed way to much on small cuts and such from sailing and gardening.  I fell while snow skiing and landed on my elbow where my arm was black, blue, purple from the bicep to near the wrist area.

Good stuff coming though and I am very encouraged.
Title: Re: Harvoni Side effects
Post by: Islandgirl on March 31, 2015, 06:10:08 pm
Sunisout, I'm so happy to see your VL so improved, congrats!  As you said, "good stuff coming through" and it is extremely encouraging!  BTW, I also bleed and bruise easily and we're watching my platelets.  Because of your earlier post, I also ordered the Serrapeptase enzyme; thanks for mentioning it.  Wishing your the best!!!!

...Islandgirl 8)
Title: Re: Harvoni Side effects
Post by: Lynn K on March 31, 2015, 06:47:22 pm
Serrapeptase

http://www.webmd.com/vitamins-supplements/ingredientmono-1115-serrapeptase.aspx?activeingredientid=1115&activeingredientname=serrapeptase

Bleeding disorders: Serrapeptase might interfere with blood clotting, so some researchers worry that it might make bleeding disorders worse. If you have a bleeding disorder, check with your healthcare provider before using serrapeptase.
Title: Re: Harvoni Side effects
Post by: Islandgirl on March 31, 2015, 07:06:03 pm
Thanks, Lynne.  She has had some lab work done to rule this out and we will be discussing on Thursday.  ...Islandgirl 8)
Title: Re: Harvoni Side effects
Post by: SunIsOut on March 31, 2015, 07:28:37 pm
Serrapeptase

http://www.webmd.com/vitamins-supplements/ingredientmono-1115-serrapeptase.aspx?activeingredientid=1115&activeingredientname=serrapeptase

Bleeding disorders: Serrapeptase might interfere with blood clotting, so some researchers worry that it might make bleeding disorders worse. If you have a bleeding disorder, check with your healthcare provider before using serrapeptase.

I did discuss it with mine and my hope is that it eats dead and inflamed tissue and that will include liver tissue as well.

Excerpt
"Dead and inflamed tissue are two important causes of the majority of ailments in the body. Serrapeptase digests (dissolves) tissue that is dead, blood clots, arterial plaque, cysts and tissue that is inflamed,and then they are then dispersed. It induces the breaking down of tissue that is fibrinous, and reduces the thickness of exudates (leaked fluids). These substances then change into harmless Amino Acids by Serrapeptase and our bodies then treat them as normal waste products. The inflammatory tissue is actually digested by this remarkable enzyme. Research studies show that this naturally occurring serra enzyme has amazing anti-inflammatory, pain relief possibilities. - See more at: http://www.serrapeptase-info.co.uk/#sthash.iHe3Gbsc.dpuf"

I can definitely tell where this has helped the pain I used to have in my finger joints and elbows.  I know that there is a potential conflict but my mean platelet volume MPV is normal.

The effect counter effects can be overwhelming though and I do discuss with my health care providers.  They are only letting me take Vitamin B, L-theanine and serrapeptase while on Harvoni.  This is a great little forum.  :)
Title: Re: Harvoni Side effects
Post by: Lynn K on March 31, 2015, 07:31:17 pm
Do you have either the PTT or INR test done? PTT Prothrombin time or international normalised ratio (INR)?

Those are tracked for me because of cirrhosis

PROTIME      normal 9.1 - 12.0 sec      result 11.7
INR                                                result 1.1

So you can see my Protime is nearing the high end of normal.

For me this is why I also have unexplained bruising and prolonged bleeding, just another symptom of cirrhosis but at least still barely in normal range so not high enough to increase my MELD score. Also another reason people with cirrhosis need to avoid NSAIDS like Advil and Aleve as well as aspirin.
Title: Re: Harvoni Side effects
Post by: SunIsOut on March 31, 2015, 07:55:17 pm
Do you have either the PTT or INR test done? PTT Prothrombin time or international normalised ratio (INR)?

Those are tracked for me because of cirrhosis

PROTIME      normal 9.1 - 12.0 sec      result 11.7
INR                                                result 1.1

So you can see my Protime is nearing the high end of normal.

For me this is why I also have unexplained bruising and prolonged bleeding, just another symptom of cirrhosis but at least still barely in normal range so not high enough to increase my MELD score. Also another reason people with cirrhosis need to avoid NSAIDS like Advil and Aleve as well as aspirin.

Hi Lynn,
Yes I did have that test done and updated my table above to include it and the Vitamin D levels. My test results were very close to yours.  Thanks much. :)
Title: Re: Harvoni Side effects
Post by: Karen1124 on March 31, 2015, 08:13:34 pm
Hi Everyone,
Has anyone heard of the castor oil pack? I think they help liver and lymph system flow. Google it! I hadn't been doing them while on treatment but I will do them when I'm done again!  Tomorrow I take my last pill!! Then blood work on Thursday!!! Take care everyone! Life is Good!!  Karen
Title: Re: Harvoni Side effects
Post by: Lynn K on March 31, 2015, 09:06:59 pm
Hi Lynn,
Yes I did have that test done and updated my table above to include it and the Vitamin D levels. My test results were very close to yours.  Thanks much. :)

OK sorry missed that looks like you are on it

:)
Title: Re: Harvoni Side effects
Post by: Katie on March 31, 2015, 09:38:01 pm
I didn't receive any notifications on the forum activity today and wondered why everyone was so quiet.  Glad I checked it out an saw you have been busy afterall!

Congratulations Sunisout!  You had lots of improvements there! You are definitely on your way and I am so happy for you!  :D  Lynn pretty much asked the questions I had and you answered them  Be careful with anything that thins your blood, but I do know you are diligent.  Glad you had you Vit D tested.  That is really important!   8)

Katie
Title: Re: Harvoni Side effects
Post by: Bituman on March 31, 2015, 11:46:49 pm
@Bitumen/Bob.

I learned a lot about managing my fatigue from the CFS boards....it's the reason I piped in last nite about it...that indeed it's different for all of us---its causes, etc...Now that we're older, cardiac issues need to be explored if we have fatigue of unknown causes. Anemia, on and on....Oy vay. ;-)

Bottom line, Bob, as we agree---it's about becoming watchmen for our bodies and looking for patterns, eating and drinking as well as we can. 85-90/10 has been my rule for years. Harvoni therapy has made me go 100% all in re: my food/fluid intake. I've never in my life eaten this cleanly and well, consistently-- I'm entering my 9th week.   Dear God please let it pay off.

Keep on cycling! I can't wait to announce my first bike ride of the season...

Wow Meg!  I feel like a rank amateur re: fatigue when compared with you.  I've not experienced anything similar  and doubt I could "push thru" anything like that.  Seems like the kind of fatigue I can ignore is more so caused by emotional stress, like stress from work.  I think the fatigue that makes me have to tap the brakes is more physical.  Again, the thing that took me a while to figure out was how to distinguish between the two.  I really hope that when you are free of HCV that your fatigue will be a thing of the past.  For sure it will pay off for you. 

I'll be anxious to hear about your first ride!  My riding is going bad because of some long work hours.  Lately more gym time for me and less road and trails. But yesterday evening I rode a trail close to home that I hadn't been on in a while and discovered last years monsoon storms really tore it up.  My old steel hardtail really beat on me.  Maybe I can use that as an excuse for a new full suspension bike?

Friday I go for 8 week labs.  Remain anxious for that so I could qualify for your 8-week thread. 

Bob
Title: Re: Harvoni Side effects
Post by: kaemicha on March 31, 2015, 11:58:30 pm
Hi all,

I had a good beginning of the week, well the weekend and Monday but today, in the middle of an appointment, I just crashed..meaning, I got Exhausted! But I had to do a few more things then come right home. Tomorrow, another important meeting and they cannot know I don't feel well. And, again,it's not that I don't feel well but more that my energy has just left me.
I'm on day 19 and was hoping that fatigue would be at least, diminishing, at this point but NO! So, again, I've got to get in the car and meet with someone and not show that I don't feel well.
Wish me luck?
Thanks!
Title: Re: Harvoni Side effects
Post by: Valsblessing on April 01, 2015, 12:42:28 am
Hello! I have been reading on here since 3/7/15 when I found out I had been approved for HARVONI. This forus has been a Godsend for me as I have had this disease since, supposedly birth. I am 61 yrs young & have pushed myself thru all my life....I rarely take meds of any sort because of side effects and this forum helped me put that 1st pill in my mouth. I am on day 14. My side effects have been a bit different than expected in that I am sleeping 2/3's of every day....haven't seen others complain of this! My VL is only 480,695 but alt is 89 & ast is 101 as of pre treatment labs....my husband says my body must need this much rest.....I keep thinking it can't last the whole 12 weeks! Any advice ot feed back is welcomed....and, again, this forum is really helping me so much! Thanks, I appreciate all of you......:)
Title: Re: Harvoni Side effects
Post by: kaemicha on April 01, 2015, 01:53:56 am
I'm new here, also, but my 2nd week-14 days on Harvoni, has been my hardest. I'm having a very busy week and that's why I posted the above. I'm doing too much. I do lay in bed 1/3rd of the day, at least, but I've felt a bit better now, in my 3rd week. While I am busy right now, I'll take the rest of the week, I hope, to rest.

Try getting up and doing paper work or simple tasks and I've found that I'm learning my energy level and it's enough to get me out but I can't do everything and even have my groceries delivered.

I doubt that I helped you much except to say that you're not alone. Try to do easy things then rest and tell your doctor.

Good luck!
Title: Re: Harvoni Side effects
Post by: Valsblessing on April 01, 2015, 04:09:22 am
Kaemicha....hello:) thanks for the feed back....I'm gonna set the alarm at 10:30 AM and try and get my self moving.....I'm fortunate because my husband and I run a business together and he is picking up the slack. He's the one who keeps saying, listen to my body! But, omg, I still have 10 weeks to go! Are you on HARVONI as well? We can exchange notes as we go....take care, and thanks.....:) are you having any side effects? Just curious? Bye.
Title: Re: Harvoni Side effects
Post by: Islandgirl on April 01, 2015, 08:10:00 am
I didn't receive any notifications on the forum activity today and wondered why everyone was so quiet.  Glad I checked it out an saw you have been busy afterall!

Congratulations Sunisout!  You had lots of improvements there! You are definitely on your way and I am so happy for you!  :D  Lynn pretty much asked the questions I had and you answered them  Be careful with anything that thins your blood, but I do know you are diligent.  Glad you had you Vit D tested.  That is really important!   8)

Katie

@Katie,  This has happened to me off and on - the first time, I thought maybe they weren't doing notifications any more as there were none for literally weeks!  Then suddenly notifications started again.  Disconcerting!  I wondered why we weren't hearing from you :)  I guess we just need to keep checking the forum anyway - must just be one of those "technical glitches".  Glad to hear from you!   ...Islandgirl 8)
Title: Re: Harvoni Side effects
Post by: flipflops on April 01, 2015, 08:36:12 am
today is day 10 for me and I have not any side effects to mention.  I take my dose at 9:00 pm and go to bed.  I have felt slightly queezy and headachy when I get up but once I get going and drink water, I am good to go.  If I start to get a headache, that tells me I need to drink more water, for me, that is the key.  I work a 40 hour week, continue to exercise 3-4 days per week and keep up with my household.  My fingers are crossed this continues for me.  Its very interesting how this drug affects people so differently. Hang in there everyone!
Title: Re: Harvoni Side effects
Post by: SunIsOut on April 01, 2015, 12:26:27 pm
Kaemicha....hello:) thanks for the feed back....I'm gonna set the alarm at 10:30 AM and try and get my self moving.....I'm fortunate because my husband and I run a business together and he is picking up the slack. He's the one who keeps saying, listen to my body! But, omg, I still have 10 weeks to go! Are you on HARVONI as well? We can exchange notes as we go....take care, and thanks.....:) are you having any side effects? Just curious? Bye.

Hi Val,

I am lucky in that I work from home most of the time and travel some but none before this May.  I also have very good health beyond this treatment I do not take any other meds.  I sleep about 8-12 hours depending on the day.  I am getting in my yard and doing my spring work like hand raking the whole yard and re-edging my garden beds with a trench shovel.  I drink a lot of water during this time and try to do about 2 hours of this each day now since last Sunday (just now warming up on the East Coast).

It is great that you husband is supporting you on all fronts and definitely listen to your body and rest as needed and try to get some activity in as well.

I have a lot of vacation and sicktime so I use it as I need it.  Keep fighting!  :)
Title: Re: Harvoni Side effects
Post by: CHepCFree on April 01, 2015, 01:42:42 pm
I just spent a couple hundred dollars to obtain a Freedom of Information Act (FOIA) request from the FDA on side effects being reported.   There were only 264 instances of reporting.   There are over 2,000 folks on this blog and I'm sure at least a few thousand more out there on this drug.   PLEASE report your side effects to the FDA no matter what they are, listed or not on the dispensing information.   That is the only way we can get a proper understanding of this powerful new drug.  Many of the reporting of side effects here are not in this FOIA report.    As you probably know there is already one death due to an interaction.   Let's keep the FDA informed so we can be safe.   I have what now seems to be permanent tinnitus as I am now off my 12 weeks of Harvoni for 4 weeks now and no relief.  There are 10 other reports of tinnitus to the FDA. There is only one report of viral relapse on the FDA report and I've seen more than that on blogs.   I wonder how many there really are   Again, please take the time to report any and all side effects to the FDA along with any information you feel important.     Thank you!
Title: Re: Harvoni Side effects
Post by: skycatcher on April 01, 2015, 01:56:38 pm
Congratulations Karen1124 for treatment completion!!!!  :) :) :) :)
and SunIsOut for awesome numbers!!!!!!!   :) :) :) :)
 
I go for my first (4) week blood work tomorrow April 2nd. Started Harvoni March 5th and the biggest side effects I've experienced has been headache that started about 7-10 days after starting treatment. I've pretty much had headaches everyday since until yesterday.  I've been taking Advil (Doc's OK-ed this) and it's helped most days but I have been surprised by the intensity of the headaches. I was drinking a lot of water already but I've really been plugging it in around 100 oz a day plus other liquids (non caffeine ). 

The Pharmacy Nurse called to check on things and she said some people's headaches go away or get less intense after awhile. Has anyone experienced this?
   ~   Skycatcher
Title: Re: Harvoni Side effects
Post by: dragonslayer on April 01, 2015, 02:18:55 pm
CHepCFree:

>> There is only one report of viral relapse on the FDA report and I've seen more than that on blogs. <<

Can you please point us to the links showing Harvoni relapse?  I want to make sure its real relapse thats being reported, ie, at the 12 wk post treatment marker or later,  rather than a low detected at end of treatment.

Thanks.
Title: Re: Harvoni Side effects
Post by: Katie on April 01, 2015, 03:17:05 pm
Harvoni hasn't been available long enough for a 12 week treatment and a 12 week post treatment test.  We will get an idea in the next month or so and then another 12 weeks for the SVR24.  That's the true test.

How are you doing Paul?  I test in another 2 weeks!  nail biting time!

Katie
Title: Re: Harvoni Side effects
Post by: dragonslayer on April 01, 2015, 03:20:32 pm
Harvoni hasn't been available long enough for a 12 week treatment and a 12 week post treatment test.  We will get an idea in the next month or so and then another 12 weeks for the SVR24.  That's the true test.

How are you doing Paul?  I test in another 2 weeks!  nail biting time!

Katie

Hi Katie.. Thats what im thinking too.. How can people be reporting relapse when 12 wks post treatment wont arrive for the very first 'pioneers' until mid april?!  Thats why I brought it up.

Guess what?  I test next week!  I wish us both big time luck, and all the rest of those doing svr testing as well.
Title: Re: Harvoni Side effects
Post by: WaltFrazier on April 01, 2015, 04:45:47 pm
Just started week 6 Harvoni.  Undetected week 4.  Drink 100+ oz.  Yesterday was terrible Actually migraine beyond belief and became nauseous and was vomiting with some blood.  Slept 15 hours and feel great again today...crazy...felt like Interferon/Ribavarin again..almost went to hospital....but its all part of the treatment...
Title: Re: Harvoni Side effects
Post by: moma on April 01, 2015, 05:39:06 pm
CHepCFree, you are so right on. I came home from the gastro yesterday fuming! We all need to report our side effects. Obviously the doctors won't listen to a damn thing we, who are going through this treatment, say. Only if it is spelled out in black and white from the FDA are our symptoms valid. When I went through Interferon I went to the emergency room. It had drained me of white cell, red cell, I could hardly walk, I had a open blistering ozzing rash from head to toe and had lost 40 lbs in a month. The doc walks in and tell me I didn't know what I was talking about, it couldn't possibly be a reaction from Interferon. At Stanford a week later the doc tells me I have to STOP taking the stuff because it is killing me.
So yesterday I walk in with a rash from Harvoni and the doc tells me "the rash can't be  from Harvoni because it isn't listed as a side effect"! Are you frigg'n kidding me. I called Gilead and asked what to take and they gave me a name of an antihystimine that they had heard worked well from patients. When I asked the doctor for a prescription it was like I was asking for haroin!
By the way the report, undetected with 7 more days to go. But have had this rash for 10 day now. An office visit that I should have left feeling Great, had me leaving really frustrated and angry with these "I'm God" doctors. You know we feel bad enough we don't need to be told we don't know what is going on in our own bodies.
Obviously I'm still pissed!   Ha-Ha, MoMa
Title: Re: Harvoni Side effects
Post by: SunIsOut on April 01, 2015, 07:43:29 pm
Are you all going to a Hepatologist?  I am not sure if you are going to gastro that that is specialized enough! I have nurses call me and the pharmacy calling asking about side effects and communicating lab results.  I am very happy with my Doctor and would be upset as you are with the doctors you have.
Title: Re: Harvoni Side effects
Post by: Keanu2015 on April 01, 2015, 08:32:32 pm
Hello everyone! Day 41... tomorrow I'm half way finished! :)

     As with Katie I didn't get an email with activity this time so I checked in anyway! wow busy busy! I had to read a while to catch up! lots of folks I haven't connected with yet. I'm glad to be on the road to freedom with all of you!  Any time CrazyCanuck -happy to help!
Meg and Island girl definitely gotta keep the nutritional info going here! lol I've basically fed myself according to what I'm learning here and a few other things I had up my sleeve also. Definitely get a juicer people! Go with Dean Marten's potion (utube vids Taking responsibility) -- I tweaked to define it- 1 large Cucumber/1/2 a Beet/4 carrots/4 celery stalks. Drink that before meals for a day just to see if he's blowing smoke. Energy out the caboose! lol Sunisout you and my other friends here have been my hepatologist. I'll see my Gastro April 22nd for the first time since Jan 16th. I haven't been able to have a word with him since on treatment. The tests I've taken were driven and chosen by me based on what I see you all doing. At least the nurses comply with me without too much hassle. Really they have had to because I'll get loud. I will make sure I report to the FDA. I actually have some concerns regarding many respiratory issues here that are not reported as side effects there. I felt like I was on the verge of something myself when I first started the drug and It was definitely caused by the drug. Almost pneumonia type symptoms. Anyway, hope everyone is well today! ~ K
Title: Re: Harvoni Side effects
Post by: Valsblessing on April 01, 2015, 08:47:07 pm
Sunisout....I've got my grand daughter teaching me how to respond to folks on here....did I personal message you? I'm learning as I go here.....LOL
Title: Re: Harvoni Side effects
Post by: SunIsOut on April 01, 2015, 10:04:00 pm
Yes, I did get that email and thank you so very much for it!  I am glad this forum is a positive resource for all of us!  :)
Title: Re: Harvoni Side effects
Post by: EleanorB on April 02, 2015, 12:58:10 pm
@ Keanu and @ Moma,

Yes I think it is really important that the patient data we're collecting here gets back to not only the FDA, but Gilead and the NIH. I was asked by CVS Caremark today if I had suffered side effects and when I said yes, they asked if they were bad enough to seek medical help and when I answered no, that was the end of the discussion.

Things I've noticed from multiple posts (and I've got them too) that are NOT part of the "reported" side effects:
Respiratory issues (in my case, like post nasal drip with a froggy cough all the time)
Rash

Anything I am missing? How do we get this across?
Title: Re: Harvoni Side effects
Post by: Lynn K on April 02, 2015, 01:43:46 pm
I have had a cough for 17 days since week 17 of treatment Harvoni Riba but I believe it is a cold I caught that is going around other than that only symptom is anemia from the riba. No Harvoni sides to report. Couple of mild headaches that's it.
Title: Re: Harvoni Side effects
Post by: lporterrn on April 02, 2015, 03:00:19 pm
Hi Val,
Congratulations on posting! It's great seeing you here. Did you get your question answered? If not, I can make it a new topic so everyone will see it.
Glad to see you here.
Title: Re: Harvoni Side effects
Post by: Valsblessing on April 02, 2015, 03:15:10 pm
Iporterrn...hello there....yes, I see that others are sleeping excessively also....I like all the feed back as I have never taken much in the way of OTC meds or even prescription meds and I now feel assured the others are taking Tylenol for headaches and Benadryl etc.....with no problem. This forum has been a Godsend for me! I was pretty apprehensive and these words have carried me thru all my anxiety. I am so blessed, I am so blessed, I am so grateful! Thank You!
Title: Re: Harvoni Side effects
Post by: elizabethfaraone on April 03, 2015, 11:05:46 am
I'm wondering the effects Harvoni has on the heart.
Title: Re: Harvoni Side effects
Post by: Keanu2015 on April 03, 2015, 12:09:59 pm
Hi Everyone! Day 43-into week 7! I'm feeling pretty good today.

       Hi Elizabeth, I haven't been able to find much if anything about the heart. I do know that some folks here have experienced higher than normal blood pressure. I had that on one or two occasions but then upon frequent testing it always fell back down into normal range. I thought I was having some slight pain there earlier on (Week 2 or 3 I think) but turned out to be something entirely different. I was just starting to exercise harder and was actually having some muscle soreness around the heart area. I believe it was costrochondritis (sp?). I stayed with it but got a little more realistic in my expectations as far as pushing myself. Now I'll notice some discomfort there only after eating something horrible like a bunch of bacon/eggs, a juicy cheeseburger or cheese steak etc. I severely limit that stuff. Sometimes too much milk in a day gives me discomfort there too. I personally know I need to watch my cholesterol due to hereditary reasons. I would say the best thing you can do is just try to exercise as much as possible. Keep your heart pump strong because it will be doing a lot more work moving these dead cells to waste. Drink a lot of water too for the same reason. Hope I was able to help. Happy Friday friends!
Title: Re: Harvoni Side effects
Post by: elizabethfaraone on April 03, 2015, 12:18:59 pm
Hi Everyone! Day 43-into week 7! I'm feeling pretty good today.

       Hi Elizabeth, I haven't been able to find much if anything about the heart. I do know that some folks here have experienced higher than normal blood pressure. I had that on one or two occasions but then upon frequent testing it always fell back down into normal range. I thought I was having some slight pain there earlier on (Week 2 or 3 I think) but turned out to be something entirely different. I was just starting to exercise harder and was actually having some muscle soreness around the heart area. I believe it was costrochondritis (sp?). I stayed with it but got a little more realistic in my expectations as far as pushing myself. Now I'll notice some discomfort there only after eating something horrible like a bunch of bacon/eggs, a juicy cheeseburger or cheese steak etc. I severely limit that stuff. Sometimes too much milk in a day gives me discomfort there too. I personally know I need to watch my cholesterol due to hereditary reasons. I would say the best thing you can do is just try to exercise as much as possible. Keep your heart pump strong because it will be doing a lot more work moving these dead cells to waste. Drink a lot of water too for the same reason. Hope I was able to help. Happy Friday friends!

I'm no longer able to exercise.  I feel sick afterwards just after a short walk.
Title: Re: Harvoni Side effects
Post by: dogdave on April 03, 2015, 01:47:02 pm
Hi Elizabeth,  interesting you mentioned the heart for sides.  In the literature I have read it did mention it could cause problems with amiodarone a drug used to treat Cardiac arrhythmia:
Coadministration with amiodarone may result in serious symptomatic bradycardia. Use of HARVONI with amiodarone is not recommended (5.1, 6.2, 7.2)
as listed on insert or website.
I've had mild arrhythmia, which has been tested by cardiologist.  Wore a monitor and was told not to worry.  I've been on Harvoni for 8 days now and had two mild episodes of mild heart flutters, one while walking and the other during a low sugar incident. Hypoglycemia can cause rapid heartbeat.  It was enough to make pause and wonder.  The walking incident was very, very mild.  The hypo was more intense and subsided when sugar returned to normal (yesterday).  I want to finish this treatment so I will avoid replicating those condition again.  Will mention to my doc.
Title: Re: Harvoni Side effects
Post by: elizabethfaraone on April 03, 2015, 02:03:57 pm
Hi Elizabeth,  interesting you mentioned the heart for sides.  In the literature I have read it did mention it could cause problems with amiodarone a drug used to treat Cardiac arrhythmia:
Coadministration with amiodarone may result in serious symptomatic bradycardia. Use of HARVONI with amiodarone is not recommended (5.1, 6.2, 7.2)
as listed on insert or website.
I've had mild arrhythmia, which has been tested by cardiologist.  Wore a monitor and was told not to worry.  I've been on Harvoni for 8 days now and had two mild episodes of mild heart flutters, one while walking and the other during a low sugar incident. Hypoglycemia can cause rapid heartbeat.  It was enough to make pause and wonder.  The walking incident was very, very mild.  The hypo was more intense and subsided when sugar returned to normal (yesterday).  I want to finish this treatment so I will avoid replicating those condition again.  Will mention to my doc.

Very interesting.
Title: Re: Harvoni Side effects
Post by: hepcondor on April 04, 2015, 12:52:04 pm
Have not posted in awhile so I thought I would update since I started today on my 3rd and last bottle. Most importantly went from 18mil to 0 HepC on my 4 week labs WooHoo!!!!! Doctor said they hadn't seen that before.
Weeks 5 thru 7 were the hardest by far. Was dizzy and pretty much out of it mentally most of the time. Very painful joints and muscles but the tinnitus was the worst symptom for me.
But the last week 8th I am feeling good with only just a little head and muscle aches. WooHoo again. I say this hoping that all of you get into this last month like me and experience the same pleasant reduction in side effects. Going thru this will only make us stronger (and healthier) in the future and I pray that each of you clear out this crap like me and get thru it one day at a time.
Happy Easter
Title: Re: Harvoni Side effects
Post by: kaemicha on April 05, 2015, 02:43:24 am
hepconder,

Thanks for you update but you've got me worried. I'm headed into my 2nd month of pills which means I'll be experiencing or might experience feeling worse, as you did.
I'm really glad for the heads up but I'm kind of worried at the same time.
I get bouts of energy but they fade. I had been feeling better but when I need to rest I've got to do it now. I will continue to read through posts to see if others have had a rough time as you have. I want to be prepared.

Michelle
Title: Re: Harvoni Side effects
Post by: SunIsOut on April 05, 2015, 10:23:19 am
Hi All, my energy levels have been great and I am 59 years of age.  I put 9 solid hours of yard work in yesterday digging my trenches for the landscape border, sanding the deck and using the chainsaw to prune trees.  I will be out today as well.  I did go to bed early and am sore as I have been all week from this but going strong. 

There does seem to be some variances from one to another so I wanted to offer a contrast here.  I am on bottle two and go in for 8 week labs a the end of the month. :)
Title: Re: Harvoni Side effects
Post by: Karen1124 on April 05, 2015, 10:28:41 am
Hi Everyone!
Just wanted to wish everyone a Happy Easter! Have a great day!!
Life is Good!  Karen
Title: Re: Harvoni Side effects
Post by: montemorton on April 05, 2015, 02:56:06 pm
I'll try to be brief and I apologize in advance as this is not an area of giftedness.  In January of 2014 I took sofosbuvir, peg-intron and ribavirin for 12 weeks.  Initially, the results were good, (undetectable viral load).  Several weeks after the treatment, my blood work showed the hep c was back. 

From the beginning of that treatment, especially when trying to sleep, I experienced a sensation of my heart beating quite vigorously, which granted, is infinitely better than no heart beat.  I could also feel a strong pulse in my finger tips.  Four weeks after completing the 12 week treatment, I had my first episode of atrial fibrillation.  I was prescribed a beta blocker but was switched to sotalol, a combination beta blocker and anti-arrhythmic. 

In Oct. 2014 I had a cardiac ablation which helped and still take a small amount of sotalol (20mg. twice daily).  Without sotalol, I'm aware of feeling skipped beats, (premature atrial contractions) which feel uncomfortable and, at least for me, are anxiety evoking.

I've been very fortunate as my insurance allowed me to have another trial of a hep c med, this time Harvoni.  Today is my 10th day.  I began on a Friday and by Sunday felt an increase in the PAC's for which I've increased the amount of sotalol.  My questions and concerns are whether the increase in the PAC's are related to the interaction between Harvoni and sotalol. 

I spoke with the nurse practitioner in my G.I's office who informed me there had been a death with someone who was on Harvoni and the anti-arrhythmic Amiodarone.  And as far as she knew, sotalol was o.k..

So far, the increase in the PAC's continues.  Other than being scared senseless, I'm fine.  I would greatly appreciate ideas about the above and what, if anything, to explore.  Thank you so much.  Monte
Title: Re: Harvoni Side effects
Post by: mario555 on April 05, 2015, 05:15:13 pm
Your rapid (skipped) heartbeat is definitely something outside the group expertise. The only thing we know for sure is that many of us with no previous heart problems have experienced an increase in blood pressure which causes ringing in the ears, etc... So, Harvoni does affect the heart or at least, the pressure. You should be extra careful with your
Medication. Good luck!
Title: Re: Harvoni Side effects
Post by: kaemicha on April 05, 2015, 10:29:00 pm
hepconder,

Thanks for you update but you've got me worried. I'm headed into my 2nd month of pills which means I'll be experiencing or might experience feeling worse, as you did.
I'm really glad for the heads up but I'm kind of worried at the same time.
I get bouts of energy but they fade. I had been feeling better but when I need to rest I've got to do it now. I will continue to read through posts to see if others have had a rough time as you have. I want to be prepared.

Michelle

Not to be annoying but I'm doing something wrong because I'm not getting answers. Will someone please tell me if what hepconder said about weeks 5 through 7 were his worse? I'm not doing that great now and I'd like to know if that's what I have to look forward to.
This forum is my only point of reference unless I want to read reams of material on hep c and I don't want to do that.
Thank you...
Michelle
Title: Re: Harvoni Side effects
Post by: Lynn K on April 05, 2015, 11:19:01 pm
Michelle

Unless hepconder checks in he hasn't seen your question it is a holiday weekend for many. I personally haven't had any issues with Harvoni been really tired from the Ribavirin but no problems with Harvoni.

Side effects  are an individual experience some have them some don't. Please don't try to talk yourself into having problems by expecting to have them.

That is how most of us learned by reading reams of material and hundreds of web pages to learn all we can in this fight for our lives

Good luck on treatment
Title: Re: Harvoni Side effects
Post by: kaemicha on April 06, 2015, 02:12:55 am
Michelle

Unless hepconder checks in he hasn't seen your question it is a holiday weekend for many. I personally haven't had any issues with Harvoni been really tired from the Ribavirin but no problems with Harvoni.

Side effects  are an individual experience some have them some don't. Please don't try to talk yourself into having problems by expecting to have them.

That is how most of us learned by reading reams of material and hundreds of web pages to learn all we can in this fight for our lives

Good luck on treatment

Lynn, thank you for taking the time to explain this to me. I've not seen a doctor for over a month. Prior to that I've not seen or talked to anyone in the medical profession, about this disease. Nothing was explained to me. Nothing, except to take a pill every day for 3 months.

You're right about my not talking into having the same symptoms as others do. I'm not good at doing my own research. It just isn't good for me, so I"ll continue to lurk and try not to be bothersome.

Good luck all!!
Michelle
Title: Re: Harvoni Side effects
Post by: Philadelphia on April 06, 2015, 02:48:11 am
I am a bad researcher, Michelle. And by that I mean I am a really GOOD researcher. It's part of my job. I had a tendency to research so much, I'd dig into the dark spaces with the bad news.

I had to stop. It was terrifying me. I refused to consult Dr Google, except for a few very limited times.

You have to know what sort of person you are. I can't research without becoming overwhelmed. That's me. Other people are amazing troves of information.  That's them.

You need to do what is right for you.

And in regards to side effects,  something I learnt early on  - never borrow trouble.

Just wait and see how you do. Sure, being prepared is important, so talk to us about what's happening and people here will absolutely be able to help. But wait for your side effects to come to you - don't rush out to greet them. Because they might not come and you've wasted all that energy for nothing.
Title: Re: Harvoni Side effects
Post by: kaemicha on April 06, 2015, 03:02:46 am
I am a bad researcher, Michelle. And by that I mean I am a really GOOD researcher. It's part of my job. I had a tendency to research so much, I'd dig into the dark spaces with the bad news.

I had to stop. It was terrifying me. I refused to consult Dr Google, except for a few very limited times.

You have to know what sort of person you are. I can't research without becoming overwhelmed. That's me. Other people are amazing troves of information.  That's them.

You need to do what is right for you.

And in regards to side effects,  something I learnt early on  - never borrow trouble.

Just wait and see how you do. Sure, being prepared is important, so talk to us about what's happening and people here will absolutely be able to help. But wait for your side effects to come to you - don't rush out to greet them. Because they might not come and you've wasted all that energy for nothing.

Thank You!

You could not have told me all of this at a better time. Reading the op, last night, worried me and this is the only place I know to turn.

I have to live in a bit of oblivion when it comes to my health and research is not good for me. That's shown in how much I reacted to post last night. I was certain, and even checked my calendar to make sure I had the next couple of weeks to be, well sick-er, I guess.

I get now that no one's reactions are same. Or some might be but there isn't a list of feelings for weeks 1.2.or 3.

This just helps so much. I need people to talk with about this and I'm afraid its you in this forum.

Again, thank you both for taking the time to write on this holiday night.  I can go to bed assured, now.

Michelle
Title: Re: Harvoni Side effects
Post by: Lynn K on April 06, 2015, 03:11:26 am
Hi Michelle

No worrries if you have a question just ask and like Philadelphia said not all can handle the reading and if not familiar with medical terms it can make your head spin lol.

If I can ask are you taking Harvoni for 12 weeks is that correct? So I guess you are genotype 1 is that 1a or 1b? Has your doctor checked on the health of your liver do you have any liver damage? Have you ever treated before?

If you don't have liver damage, have never treated prior and are taking Harvoni your chances of a cure are excellent.

And while some have had some sides most report little to no side effects except maybe some mild headaches and some report having more energy so having a little trouble sleeping at night.

Good luck on treatment I am sure you will do great just like taking a vitamin for 12 weeks and you are done!
Title: Re: Harvoni Side effects
Post by: elizabethfaraone on April 06, 2015, 08:47:21 am
When we decide to take Harvoni (it is an individual decision), we are part of an experiment.  It cures the disease but we won't know of long term adverse effects until the data is compiled.  Fatigue is an adverse effect for most taking the medicine.  What, physiologically, is causing the fatigue?  We won't know until it is carefully examined.  I'm detached and happy to be a part of advancements made in the field of medicine.  If I am injured in the process, I'm OK with that.
Title: Re: Harvoni Side effects
Post by: SilverDC on April 06, 2015, 11:25:27 am
Hello All.

I’ve been monitoring this site since mid-December and this is my first post.  I’ve had HepC for 40 years and have had no ill effects.  Viral load at the beginning of treatment was 3.5 and liver was F0.  Started treatment January 2nd and ended March 26th.  Zero side effects.  Both February 13th and March 27th tests showed UNDETECTED.   Life is good and I’m thrilled and excited about my future.

Question for the Group.

All of my adult life, 40 years and I’m now 60, when I close my eyes and face the sunlight I’ve seen hundreds of little yellow translucent dots floating/moving around in my eyelids.  They have always been there… and now they are gone.  Not exactly sure when they went away, because I did not know to pay attention to them.  Has anyone else experienced the same thing?

Be well.
Title: Re: Harvoni Side effects
Post by: mario555 on April 06, 2015, 12:06:04 pm
Silver DC. I have suffered ophthalmic headaches since I have tried interferon in 2000. I would see flashes in my eyes and would have to hide in the dark for 1 hour to have them disappear. I would have an episode once a month on average and it seemed to be related to my nutrition. Since I have started the treatment on November 20th (24 weeks), I have not had a single episode! I am really amazed at seeing how much of my overall health was related to this awful disease...
I am now at week 21 and can't wait to finish the treatment. I "feel" I'm cured but, I don't dare to stop! 24 little suckers left..
Title: Re: Harvoni Side effects
Post by: Keanu2015 on April 06, 2015, 12:32:01 pm
Good morning friends!

                  Day 46 for me, closing in on 7 weeks of 12! I am honored to be treating right here along with you fellow souls. As a group of 12 weekers, those who went before us (the Harvoni pioneers), are rapidly approaching the SVR 12 mark. I was thinking mid April? Anyway I"m excited to hear how they did overall! Philadelphia and Elizabeth those were some very powerful statements you made. Thank you and I couldn't agree more. Michelle you can find SO much if you go back through and read from the beginning of this thread. Many folks including myself have spoken about their side effects and their responses to them on weeks 1 one thru 3. There is so much good information there. As far as personal perspective: I have my own blanket view of what this drug means and is doing to me as Philadelphia mentioned. I feel that the disease that was inside me has already been killed by the drug, but that's me. I feel that the side effects I'm experiencing now are that of my body chemistry continuing to assimilate to the drug. Everyone is different. When Gilead put their guidelines together they didn't give the doctors much if any discretion to work with which is a good thing. When I had LYME disease in 2010. I pulled out the tick with its parts intact the day it got on my leg. Regular MD's thought 1000 MG in a single dose or up to 3 weeks of Doxycycline was a safe choice based on the type of tick. I dismissed that theory, started the 3 week course one prescribed and and went to see a specialist 60 miles away anyway. The "bulls-eye" appeared WHILE ON Doxy. He felt 8 weeks was absolutely necessary because of the risk for a life of torture. He also was fully prepared to rotate with another antibiotic because the spirochetes (specific lyme germs) in my bloodstream were such deviant little creatures. In his experience, (many Lyme cases) spirochetes were capable of survival by adapting to and or "hiding" from the drug. In my case with the drug constantly there in the environment they needed to live, they eventually lost the game. Therefore, having heard this from the horses mouth once before, I realize that the best thing possible for us is actually over-kill! If this thing is anything close to what Lyme was and we all know it's more incidious then absolutely. Hope everyone is doing well today. If you can't exercise, try to bounce a bit. Gotta move around- keep the lymph and circulatory systems flowing as vigorously as possible. Keep the heart working and drink a boat-load of water every day! SilverDC I saw floating squiggly particles at times, never any yellow though. I do know that the backs of my eyeballs (felt like muscles) were starting to become more sore everyday just prior to treatment. That is gone now. It went away by week 3 and 4. Mario and Silver I'm so glad you are doing better! I can't wait to be where you are! Hope everyone had a wonderful Easter weekend! ~ K
Title: Re: Harvoni Side effects
Post by: kaemicha on April 06, 2015, 06:34:13 pm
Hi Michelle

No worrries if you have a question just ask and like Philadelphia said not all can handle the reading and if not familiar with medical terms it can make your head spin lol.

If I can ask are you taking Harvoni for 12 weeks is that correct? So I guess you are genotype 1 is that 1a or 1b? Has your doctor checked on the health of your liver do you have any liver damage? Have you ever treated before?

If you don't have liver damage, have never treated prior and are taking Harvoni your chances of a cure are excellent.

And while some have had some sides most report little to no side effects except maybe some mild headaches and some report having more energy so having a little trouble sleeping at night.

Good luck on treatment I am sure you will do great just like taking a vitamin for 12 weeks and you are done!

Lynn, I appreciate your understanding that this is not something I'm able to research.
I've been told Nothing! by the doctors. I've seen my GI doctor, who put me on Harvoni. I'd been ill since last summer, but nothing was discovered until a few months ago, when I met with the Harvoni doctor.

I know very little about my labs or what they mean. I do have or think I have cirrhosis-possibly extensive but I've had that for almost 30 years. Prior to this I had no input on my hep c. So, I'm lost here. Totally lost and uninformed.

After you and Philadelphia wrote me, I immediately felt better and not alone. I will do what Keanu wrote about my reading the other posts. That much I'm able to do.

Again, all support is appreciated and I wish us all only the best!
Title: Re: Harvoni Side effects
Post by: kaemicha on April 06, 2015, 06:42:37 pm
Hello All.

I’ve been monitoring this site since mid-December and this is my first post.  I’ve had HepC for 40 years and have had no ill effects.  Viral load at the beginning of treatment was 3.5 and liver was F0.  Started treatment January 2nd and ended March 26th.  Zero side effects.  Both February 13th and March 27th tests showed UNDETECTED.   Life is good and I’m thrilled and excited about my future.

Question for the Group.

All of my adult life, 40 years and I’m now 60, when I close my eyes and face the sunlight I’ve seen hundreds of little yellow translucent dots floating/moving around in my eyelids.  They have always been there… and now they are gone.  Not exactly sure when they went away, because I did not know to pay attention to them.  Has anyone else experienced the same thing?

Be well.

I'm unsure whether to post a possible answer. Obviously, I'm not a doctor but I can offer information that my ex husband had, what he called, floaties, when he shut his eyes but they would come and go. I'm starting to get black floaties, for lack of better word, and they will stay with me for months then just disappear but I hear that's fairly normal.

I hope you find what it is that's going on but from the tiny bit I know, I wouldn't be too worried.

Michelle
Title: Re: Harvoni Side effects
Post by: Philadelphia on April 06, 2015, 06:47:52 pm
The great benefit about reading posts here is that people here are thoughtful, aware of our frailties and have walked at least a few hundred miles in our shoes. Of course anything said here does not replace good medical advice, but we all know what it's like to walk your path. 
Title: Re: Harvoni Side effects
Post by: kaemicha on April 06, 2015, 07:27:09 pm
The great benefit about reading posts here is that people here are thoughtful, aware of our frailties and have walked at least a few hundred miles in our shoes. Of course anything said here does not replace good medical advice, but we all know what it's like to walk your path.

And that's all I need. People who understand. I don't have anyone who has gone through hep c and I don't have anyone to talk to.

I'm pretty much tired, all the time - except for of course bedtime! Today, I was going to get up and work out but I was so nauseous I couldn't get out of bed until mid afternoon. But, up now. Not ready to work out..a little upper body is about all I can do today..but there is always tomorrow.

And, from what I'm reading the medical community is almost as new to Harvoni as we are. Ok, they do know more but I honestly was given NO instructions. I didn't want any stipulations, so I was fine with that. But, I was told to hydrate, which I do but since my liver is compromised and I have very low sodium levels, and the liquid goes right through me. All in all, despite my low low energy level, I'm still able to get out and about..not for long periods of time but long enough to get things done. Today, I'm not well enough to go out but I will be well enough tomorrow!

Title: Re: Harvoni Side effects
Post by: Katie on April 06, 2015, 08:15:28 pm
Hi Michelle,  Severe fatigue is a horrible thing to deal with and can lead to depression.  I was there prior to treatment and then I felt wonderful, almost immediately after starting on Harvoni.  Around week 9 & 10 I once again had horrible fatigue where I could barely do anything but then one day, I woke up feeling terrific again.  Who knows why.

One of the best things you can do for yourself is to get an understanding of this disease and this treatment.  It allows you to be pro active and the ability to ask informative questions when you do see your doctor.  I suggest you get copies of all of your blood work and any other tests from your doctor.  If you call, many doctor's offices will mail them out to you.  You may not understand them but it is easy to look on line or ask on this forum about what they mean and then you can compare the results from one test to another. It gives you some control and no understanding can cause undo stress.

Hydrating will make you feel better as it helps to flush out the toxins.  With Hep C, the liver does not purify the blood the way it should which causes, fatigue, insomnia, brain fog along with other things depending on your overall health.  On Harvoni, your liver is beginning to work again so in my mind it makes sense that during the treatment you might feel lousy sometimes, so when that happened I just kept telling myself the medicine is working and it is temporary.

Why is your sodium low?  This site explains the possible causes of low sodium.  If you don't understand why it is low it may be helpful to you and it is easy to understand. 
http://www.mayoclinic.org/diseases-conditions/hyponatremia/basics/causes/con-20031445

Another thing I suggest is to protect your liver by eating healthy, discuss any medications including over the counter and take as few as you can.  I stopped all supplements other than Vitamin D and my B complex (on occasion) as they aren't sure about interactions with supplements.  They do, however know, St John's Wart should never be taken with Harvoni and neither should antacids (within 4 hours).  I found eating several small meals throughout the day worked better for me than a large meal and actually started having my evening meal around 3:00 in the afternoon with just a salad, a soup or some other snack later on.  This was easy for me as I am retired and am home all day which isn't always possible for many.  I have remained on this schedule now that I have completed my 12 week treatment.

The last thing is exercise and that depends on your energy level, but the more you can do, the better you will feel.  When I had that bout of horrible fatigue, I made it a point to get outside and get some fresh air and just walk around the yard the best I could.  It always helped.  Fresh air is good for you.  Just sitting on the deck and watching and listening to the birds and my dog and cat always boosts my spirits too, and now with springtime, things are coming to life and I love that.

I think that's enough for today and I hope some of it helps.  We are all going through this and there are lots of individual variations, but listen to your body and give it what it needs.  It doesn't hurt to push it a little, but rest as you need to.  Short walk...sit and rest then another short walk.  Maybe that would work for you.

Good luck.  You aren't alone and you can ask anything here.  It is a wonderful supportive group.

Katie
Title: Re: Harvoni Side effects
Post by: kaemicha on April 06, 2015, 09:38:17 pm
Hi Michelle,  Severe fatigue is a horrible thing to deal with and can lead to depression.  I was there prior to treatment and then I felt wonderful, almost immediately after starting on Harvoni.  Around week 9 & 10 I once again had horrible fatigue where I could barely do anything but then one day, I woke up feeling terrific again.  Who knows why.

One of the best things you can do for yourself is to get an understanding of this disease and this treatment.  It allows you to be pro active and the ability to ask informative questions when you do see your doctor.  I suggest you get copies of all of your blood work and any other tests from your doctor.  If you call, many doctor's offices will mail them out to you.  You may not understand them but it is easy to look on line or ask on this forum about what they mean and then you can compare the results from one test to another. It gives you some control and no understanding can cause undo stress.

Hydrating will make you feel better as it helps to flush out the toxins.  With Hep C, the liver does not purify the blood the way it should which causes, fatigue, insomnia, brain fog along with other things depending on your overall health.  On Harvoni, your liver is beginning to work again so in my mind it makes sense that during the treatment you might feel lousy sometimes, so when that happened I just kept telling myself the medicine is working and it is temporary.

Why is your sodium low?  This site explains the possible causes of low sodium.  If you don't understand why it is low it may be helpful to you and it is easy to understand. 
http://www.mayoclinic.org/diseases-conditions/hyponatremia/basics/causes/con-20031445

Another thing I suggest is to protect your liver by eating healthy, discuss any medications including over the counter and take as few as you can.  I stopped all supplements other than Vitamin D and my B complex (on occasion) as they aren't sure about interactions with supplements.  They do, however know, St John's Wart should never be taken with Harvoni and neither should antacids (within 4 hours).  I found eating several small meals throughout the day worked better for me than a large meal and actually started having my evening meal around 3:00 in the afternoon with just a salad, a soup or some other snack later on.  This was easy for me as I am retired and am home all day which isn't always possible for many.  I have remained on this schedule now that I have completed my 12 week treatment.

The last thing is exercise and that depends on your energy level, but the more you can do, the better you will feel.  When I had that bout of horrible fatigue, I made it a point to get outside and get some fresh air and just walk around the yard the best I could.  It always helped.  Fresh air is good for you.  Just sitting on the deck and watching and listening to the birds and my dog and cat always boosts my spirits too, and now with springtime, things are coming to life and I love that.

I think that's enough for today and I hope some of it helps.  We are all going through this and there are lots of individual variations, but listen to your body and give it what it needs.  It doesn't hurt to push it a little, but rest as you need to.  Short walk...sit and rest then another short walk.  Maybe that would work for you.

Good luck.  You aren't alone and you can ask anything here.  It is a wonderful supportive group.

Katie

Wow Katie, thank you. I love all that you've written here.

I do have my labs and my wonderful neighbor is a nurse and she reads them for me and when she's able she goes to the doctor with me. She knows the questions to ask and has a much better memory than I do.

Emotionally, I've done surprisingly well. I will do whatever it takes to avoid being down. I don't care what it takes - I will fight it!

I think I haven't made mention of how grateful I am to be taking this drug and yes, when I don't feel well, I know, I just know it's  because of the Harvoni working.

Ironically, this has been the hardest day I've had and I'm just finishing up round one. Will start my 29th pill on Thursday.

I have to drive myself to get my labs and well..do most everything on my own and I have to go out whether I feel well or not.

If I dwell or give too much energy to the disease then I'm prone to getting down.

Oh, and about my sodium level being in the 120somethings..my liver is damaged from drinking. When I quit, almost 30 years ago, immediately my sodium level was low and has been ever since. No doctor has ever said how to elevate it. In fact I've been told I cannot get my levels up to normal so I've given up on that but I will check out your link.

All the information you've posted here helps me immensely and as always-very much appreciated.
Title: Re: Harvoni Side effects (memory loss)
Post by: kaemicha on April 06, 2015, 09:44:06 pm
I just joined this forum in order to find out if anyone can offer insight based on experience with Harvoni side effects to help my family understand what is happening with my mom--specifically, sudden onset of memory loss. She has had Hepatitis C for many decades, is in her early 80s, and started Harvoni treatment in January. She has several other medical conditions for which she takes medication, including medicine to shrink a pituitary tumor.

In the last couple of weeks, toward the end of the Harvoni 12-week cycle, my mom experienced congestive heart failure and was put on oxygen. This past week, while her oxygen levels improved and she was able to stop the oxygen tank, she began to experience serious confusion and memory loss and symptoms that present like dementia. Testing revealed a kidney problem, so her doctor took her off the Harvoni with 6 pills remaining. The kidney problem has resolved itself, but my mom's memory has not returned. In addition to bloodwork, she has had an MRI, a spinal tap, and is going for an EEG this week. Doctors do not know the cause of the sudden memory loss as yet.

We are wondering if her sudden memory loss could be either a side effect of Harvoni, a side effect of the combination of Harvoni and one of the other medicines that she is taking, the result of a possible mistake in her dosage due to confusion on her part, or ???? If you have had or know of anyone who has had memory loss while taking Harvoni, please reply.

I am very new here but I can attest to the fact that my thinking gets muddled and my memory is so much worse, while I'm on this. I'm going to assume that I'll be able to maintain a train of thought when the medication is over. I'm not going to worry about the memory part. It really became noticable when I started on Harvoni, 26 days in.
Good luck to you and your mom!

Michelle
Title: Re: Harvoni Side effects
Post by: Lynn K on April 06, 2015, 10:29:40 pm
Hi Michelle

When you said "I do have or think I have cirrhosis-possibly extensive but I've had that for almost 30 years." why do you think that? Have you had a liver biopsy at so point or a fibrosure or fibroscan?.

Many have had hep c for very long amounts of time with little liver damage.

I had hep c for likely 30 years before I was diagnosed with cirrhosis and I was monitored closely for 20 years before I was diagnosed with cirrhosis with liver biopsies every 5 years each one with more and more damage.

Unless you have been tested why would you think you have cirrhosis?
Title: Re: Harvoni Side effects
Post by: kaemicha on April 07, 2015, 02:14:10 am
Hi Michelle

When you said "I do have or think I have cirrhosis-possibly extensive but I've had that for almost 30 years." why do you think that? Have you had a liver biopsy at so point or a fibrosure or fibroscan?.

Many have had hep c for very long amounts of time with little liver damage.

I had hep c for likely 30 years before I was diagnosed with cirrhosis and I was monitored closely for 20 years before I was diagnosed with cirrhosis with liver biopsies every 5 years each one with more and more damage.

Unless you have been tested why would you think you have cirrhosis?

Lynn,

I do have cirrhosis. At least that's what the biopsy's showed and I had a damaged liver before I contacted hep c.  I've had 2 biopsy's and both showed damage..it's just something I've never quite believed but it's true. I damaged it.

About a decade later, when I met my ex husband, he's the one who gave me hep c. He and other ex had been needle users and I got the .. is it a disease, hep c. I found that out when I had an on the job injury and had to get blood tests. I was shocked. I've never done hard drugs or needles of any kind.

That's all my brain knows for now...except I don't know what  fibrosure or fibroscan..is or are!

Michelle
Title: Re: Harvoni Side effects
Post by: kaemicha on April 07, 2015, 02:23:26 am
I'd like to add that I'm not thinking real clearly and I forget to include more details. I'm sorry for that. I'm almost caught up in my history and will condense soon.

Now, to bother you further...I was planning to go to Europe, this time next month, for 2 weeks. Any chance I would have the energy/stamina to do that? Just your opinion...and I think I know the answer.  :-\
Title: Re: Harvoni Side effects
Post by: Lynn K on April 07, 2015, 02:51:42 am
Hi

So you were told you were F4? F4 is cirrhosis there is also F0, F1, F2, and F3 each is more and higher levels of scarring (fibrosis).

Fibroscan is testing available in some liver specialists offices it is similar to an ultrasound but kinda thumps your side then determines how hard you liver is. A fibro sure is a kind of blood test looking at specific markers than indicate cirrhosis.

Hepatitis c is a virus a damaged liver is called liver disease.

Do you get abdominal ultrasounds every six months along with an AFP blood test to monitor for early indications of liver cancer?

Have you had an upper endoscopy to check for esophageal varicies? My doctor had me get an upper endoscopy and a pneumonia vaccine shot right away after I was diagnosed with cirrhosis.

Travel well that is up to you. I went to Italy for a week in mid March while treating with Harvoni and Ribavirin. I have developed anemia from the Ribavirin but I went. I am often out of breath from the anemia but went on a walking tour of the Vatican. But I am kind of a tough cookie.

So just depends on how you feel
Title: Re: Harvoni Side effects
Post by: kaemicha on April 07, 2015, 05:14:33 pm
Hi

So you were told you were F4? F4 is cirrhosis there is also F0, F1, F2, and F3 each is more and higher levels of scarring (fibrosis).

Fibroscan is testing available in some liver specialists offices it is similar to an ultrasound but kinda thumps your side then determines how hard you liver is. A fibro sure is a kind of blood test looking at specific markers than indicate cirrhosis.

Hepatitis c is a virus a damaged liver is called liver disease.

Do you get abdominal ultrasounds every six months along with an AFP blood test to monitor for early indications of liver cancer?

Have you had an upper endoscopy to check for esophageal varicies? My doctor had me get an upper endoscopy and a pneumonia vaccine shot right away after I was diagnosed with cirrhosis.

Travel well that is up to you. I went to Italy for a week in mid March while treating with Harvoni and Ribavirin. I have developed anemia from the Ribavirin but I went. I am often out of breath from the anemia but went on a walking tour of the Vatican. But I am kind of a tough cookie.

So just depends on how you feel

I have had, until recently, had NO input about my liver except that it's 80% irreparable damage but functins ok, for someone that has the this extensive kind of damage.  I'm totally in the dark about all the acronyms you put in your post...(e F4? F4 is cirrhosis there is also F0, F1, F2, and F3 )..mean nothing to me.

I was treated poorly since I was an alcoholic and in the 90's hospitals and doctors didn't like that and told me I could never quit. So I quit! And, they still didn't bother to do much since I was the cause of my own liver damage. That's pretty much all I know.

The GI doctor, I have now, wants to do the endoscopes, I don't want the lower one, but he'll only do them at  the same time so I guess..after I finish the pills.

And, Thanks! for the input on my possible trip. My friend is going to Paris and I am going to try and join her.
That makes me happy.

Michelle
Title: Re: Harvoni Side effects
Post by: Lynn K on April 07, 2015, 06:06:38 pm
ok here is some info about staging of liver damage.

http://www.myliverexam.com/en/liver-fibrosis-and-steatosis.html

Fibrosis


Any chronic attack on the liver will cause inflammation, which then leads to the formation of fibrous scar tissue in the liver, creating hepatic fibrosis. This fibrosis is therefore a scarring process that will replace damaged liver cells. The extent of this fibrosis can vary, and it is described in several stages. A normal liver is at a stage between F0 and F1. Stage F2 denotes light fibrosis, and F3 is severe fibrosis. 'Cirrhosis' is defined from stage F4, when scar tissue exists throughout the liver.

Hope that helps.

I have never been told anything like 80% of anything I was told I had F4 which means cirrhosis in January 2008. Thus far my cirrhosis is considered compensated as I have a MELD score of 8

http://en.wikipedia.org/wiki/Model_for_End-Stage_Liver_Disease

http://www.mayoclinic.org/medical-professionals/model-end-stage-liver-disease/meld-model-unos-modification

and child pugh score "A"

http://en.wikipedia.org/wiki/Child-Pugh_score

http://www.mdcalc.com/child-pugh-score-for-cirrhosis-mortality/

You should ask your doctor for your MELD score and Child Pugh score.

You said you had a biopsy the report should say the fibrosis score of either F1 F2 F3 or F4 and also an inflammation score. You should ask for copies of your records they are your tests that way you will know more about what is being discussed here.

If you have cirrhosis you should be seeing a hepatologist associated with a liver transplant center if possible they are best equipped to work with patients with this level of liver damage.

You need to do the endoscopies to make sure you don't have a risk of bleeding from enlarged blood vessels. The worst thing about the lower is the prep other than that they are about the same. I have no memory of either of the procedures. I guess I have had 3 lower endoscopies and about 10 upper ones because I had grade 3 esophageal varicies discovered on my 3rd endoscopy abd had to go in 4 times for repeted bandings to make sure we got all the enlarged blood vessels. Now I get one annually.

Go to Paris! yes go life life! there is no better day than today for who knows what tomorrow brings.

Congratulations on you many years of sobriety keep up the great work!
Title: Re: Harvoni Side effects
Post by: kaemicha on April 07, 2015, 09:40:14 pm
ok here is some info about staging of liver damage.

http://www.myliverexam.com/en/liver-fibrosis-and-steatosis.html

Fibrosis


Any chronic attack on the liver will cause inflammation, which then leads to the formation of fibrous scar tissue in the liver, creating hepatic fibrosis. This fibrosis is therefore a scarring process that will replace damaged liver cells. The extent of this fibrosis can vary, and it is described in several stages. A normal liver is at a stage between F0 and F1. Stage F2 denotes light fibrosis, and F3 is severe fibrosis. 'Cirrhosis' is defined from stage F4, when scar tissue exists throughout the liver.

Hope that helps.

I have never been told anything like 80% of anything I was told I had F4 which means cirrhosis in January 2008. Thus far my cirrhosis is considered compensated as I have a MELD score of 8

http://en.wikipedia.org/wiki/Model_for_End-Stage_Liver_Disease

http://www.mayoclinic.org/medical-professionals/model-end-stage-liver-disease/meld-model-unos-modification

and child pugh score "A"

http://en.wikipedia.org/wiki/Child-Pugh_score

http://www.mdcalc.com/child-pugh-score-for-cirrhosis-mortality/

You should ask your doctor for your MELD score and Child Pugh score.

You said you had a biopsy the report should say the fibrosis score of either F1 F2 F3 or F4 and also an inflammation score. You should ask for copies of your records they are your tests that way you will know more about what is being discussed here.

If you have cirrhosis you should be seeing a hepatologist associated with a liver transplant center if possible they are best equipped to work with patients with this level of liver damage.

You need to do the endoscopies to make sure you don't have a risk of bleeding from enlarged blood vessels. The worst thing about the lower is the prep other than that they are about the same. I have no memory of either of the procedures. I guess I have had 3 lower endoscopies and about 10 upper ones because I had grade 3 esophageal varicies discovered on my 3rd endoscopy abd had to go in 4 times for repeted bandings to make sure we got all the enlarged blood vessels. Now I get one annually.

Go to Paris! yes go life life! there is no better day than today for who knows what tomorrow brings.

Congratulations on you many years of sobriety keep up the great work!

You all are saving my sanity. I had the best day, today and I really think it's because I can talk to you all here.

Lynn, I cannot begin to thank you enough for all the important information I might need. I've printed it out. This week will be bloodwork then next week I see the doctor and I'll take what you've written here, with me and ask him line by line. Of course I'll forget some of it but - oh well.

I have another friend who was diagnosed with 80% irreparable liver damage and we thought that was odd..both of us having the same percentage of damage. I don't know if that's what the doctors tell all drinkers..former drinkers.

I know the consequences of my actions might not be all that good but it's not going to stop me. You've helped me regain my strength and I'll fight and do what I have to do. Just makes me feel good-for now-to say I'm not going to do it but bottom line is that I'm really comfortable with my GI doctor. He is the one who said those tests are next. I don't have anyone to take me and pick me up but I'll work on it.

You've helped me accept more than I expect to and as always thanks to you all.

Michelle
Title: Re: Harvoni Side effects
Post by: MEG on April 08, 2015, 01:12:25 am
Hi all---newcomers and old friends.

I also was not getting notifications...hmm.

Unfortunately, I have been so sick. The fatigue has been severe and layered on top was a rare side effect from the Levaquin that I was placed on about 3 weeks ago for a stubborn sinusitis----a pretty severe case of tendonitis of my shoulders. Before they'd pin it on the Levaquin, I've been back and forth to the doctor, spine specialist to assure it wasn't nerve compression from my cervial neck vertebrae.

Just the back and forth to my pcp, then specialist has been more than I could bare---at times.

The good news is that I remain undetectable at 8 weeks on-treatment.

Today I completed my 10th week with 2 more to go.

My doc's(pcp and hepatologist) think the severe fatigue(and accompanying muscle aches, joint aches) are the Harvoni---I pray that they are correct----some of you will remember that I'd been feeling lousy from colds/sinusitis since October.....my fear, actually of late, terror, has been that I was having a Chronic Fatigue Syndrome type relapse. I spoke about my symptoms mimicking the latter upthread.

That although I was hcv negative now, that my fatigue, all these years, was a reaction that happens to folks with CFS---where a virus turns on their immune system and doesn't know how to turn itself off. Time will tell.....

My tinnitus is much improved this week---the only side effect that I can with certainly attribute to the Harvoni(after the first couple of weeks of nausea/headaches). It was never bothersome but noticeable.  Today I happened to notice that it's gone ;-)

Otherwise, I'm eating and drinking well---although, over Easter i was so sick, sleeping so much that I developed a Harvoni headache because I was unable to drink enough fluids.

I did anyway indulge in some dark chocolate and a cupcake  on Easter---and I payed for it. My fatigue yesterday was horrible. I felt hungover from the sugar and wheat(I've been completely sugar-fee, gluten-free throughout treatment)...

I will now begin counting down from day 14 to day Zero! April 21 will be my last dose...

For any newbies---it truly is worth it---despite my having had this profound fatigue, sinusitis, and now tendonitis,  and even the weight gain(!), loss of muscle tone due to the inability to exercise----to be able to say that I am hcv negative after all these years gives me much strength and hope. And I keep focused on how this tough period is but another pothole on the road and with Spring here, all those roads get fixed ;-)

I wish for all of you continued healing and strength.......can't thank you enough for being here and sharing so generously.
Title: Re: Harvoni Side effects
Post by: MEG on April 08, 2015, 01:20:02 am
@Katie and Paul

Rooting for undetectable for you!!!

@Islandgirl I saw the thread where you were discussing having a biopsy to see if your liver is getting better...Hmm....it takes a while to see those changes....I wouldn't be in a rush and I do wonder how and how often doctors will be assessing the livers of those with fibrosis/cirrhosis?

Being SVR is truly the most important aspect, imo---esp if one is not engaging in liver-stressing lifestyle habits...

Island girl, how is your energy now that you've been off therapy for several weeks? I'd love to know...Hugs my dears!
Title: Re: Harvoni Side effects
Post by: Bituman on April 08, 2015, 09:33:58 pm

I will now begin counting down from day 14 to day Zero! April 21 will be my last dose...


Another one of our group sprinting for the finish!  Meg you are currently the Mark Cavendish of the Harvoni crowd! 

Keep going...

Bob
Title: Re: Harvoni Side effects
Post by: MEG on April 08, 2015, 10:36:00 pm
@Bob

Quote
Another one of our group sprinting for the finish!  Meg you are currently the Mark Cavendish of the Harvoni crowd!

I wear this with a badge of honor. ;-) All the best Bob...At which week are you now?
Meg. 
Title: Re: Harvoni Side effects
Post by: Bituman on April 09, 2015, 12:04:29 am
Tomorrow evening at 9 PM I will start week 10.  Nine down, 3 to go.  Time is really passing quickly. 

Tonight I signed up for the "Liver Walk" a week from Saturday in Phoenix.  It's organized by the American Liver Foundation.  I'm planning on riding my bike to the event and then either doing the 1k walk or 5k run.  Not sure my knee is up for 5k.    Trying to figure out a sign or tee shirt that advertises HCV treatment.  Maybe "Harvoni Warrior?"  Gilead ought to like that since they are a major sponsor. 

Bob
Title: Re: Harvoni Side effects
Post by: Lynn K on April 09, 2015, 02:21:04 am
I like the t shirt idea Bob good luck and have fun

Meg I am pulling up behind you folks with 26 days to go of my 24 week treatment woo whoo sprinting for the finish line!
Title: Re: Harvoni Side effects
Post by: texasgal on April 09, 2015, 09:03:42 am
Hello
I'm happy to report NO detection of virus after four weeks of Harvoni. Blood results are stellar with everything normal except slightly high is Lymphocytes. Has anyone experienced the same?

Also my Iron is also high which is strange but maybe something I ate that week? 


Thanks
GHC
Title: Re: Harvoni Side effects
Post by: texasgal on April 09, 2015, 09:19:15 am
Hey Warriors, Have 22 more days on Harvoni. I found out my Lymphocytes have jumped from 1132 - 4180. Does anyone know why. My Primary is baffled on this because Harvoni is new & there's not much info on it. I read it has something to do with white blood cells. My Neurologist said it's a minor thing don't worry, but he doesn't know anything about Harvoni & what it does. So far my ALT is 13 & AST is 18. Won't get VL till May. Forget the GI office they never call me back.
Title: Re: Harvoni Side effects
Post by: hepcondor on April 09, 2015, 11:55:33 am
Hi Michele,

Sorry for the delay and want to say that I am very sorry if I worried you. Yes weeks 5 thru 7 were the hardest for me but as you see from everyone on here the sysmptoms and circumstances for each individual are different.
I am in sales and having to look at people in the eyes and carry on any type of long term conversation when your head and body hurts is very hard. I would get dizzy and actually start to get a slight panic attack right in front of them. Almost ran out of the room once...LOL But I was a typical stubborn man and didn't tell anyone at work either. I finally told one person so I could cut down to 4 days a week at work and that helped.
22 pills left and the last 2 days I have been working in the yard and yesterday I hit the heavy bag for the first time in months. I know my body is going to be much stronger in just another month and then I am going to get in great shape.
Again I apologize for worrying you. I have to say also that going thru several days in a row of straight pain is not a good idea. That's what gets you depressed and anxious. I went to Colorado and got some cookies and chew one every three days or so. It makes me feel better and it kind of resets the system. I know some don't agree with polluting your body like that but the doctor also told me not to take Advil because of the damage to your liver. So I gave it up weeks 5 thru 7 even though I have been taking it for 15 years because it helps my back. As soon as I started taking it again my muscle aches got much better.
Meg you and I sound like we are on the same track and pretty much with the same effects. The tinnitus is crazy isn't it and very difficult to manage but a big Congrats to you and everyone that are getting close to finishing and clean blood!!  WooHoo!!!
Title: Re: Harvoni Side effects
Post by: Karen1124 on April 10, 2015, 08:05:48 am
Hi Everyone,
Got my end of treatment blood work back yesterday it is less than 15 VL they had me repeat blood work yesterday! What next? Life is
Good!! Karen
Title: Re: Harvoni Side effects
Post by: Joseph80 on April 10, 2015, 09:39:26 am
I just started my harvoni treatments, I was wandering I take  benadryl for itching and tramadol for a neck surgery I had can I keep taking these meds while on the treatment or should I stop I can find anything that tells me it's okay to take them or not take them need some help hear
Title: Re: Harvoni Side effects
Post by: Davidlm1 on April 10, 2015, 11:05:45 am
Hi folks,
Well, got my blood drawn for my first result this morning.  Hoping to know how things are looking on Monday.  The Harvoni has continued working kind of hard on me with side effects.  Now into the phase of having some blurred vision.  Distracting but can still function OK.  I sit at a computer reading clinical information all day so that doesn't help with the vision but ... Still having nausea issues.  But still losing some weight which is a good thing.  Not crazy loss but some.  Am getting these really intense hunger pains that are literally getting me very nauseous.  Wondering what the Harvoni is doing to the digestive track?  I have been one to not have a huge appetite and get full easily but am finding that is really changing now.  I can eat but then still feel hungry when I get those hunger attacks.  Wondering if others are having this as well.  Needing to sign off for now but will report back on my results.  Keeping fingers crossed!  Hope everyone has a great rest of the day.  David
Title: Re: Harvoni Side effects
Post by: Katie on April 10, 2015, 01:27:48 pm
Hi Everyone,
Got my end of treatment blood work back yesterday it is less than 15 VL they had me repeat blood work yesterday! What next? Life is
Good!! Karen

Hi Karen,  I was disappointed with my EOT test at <12 IU/mL on Feb 25th then I saw a study where those detected with a viral load less than what could be counted, cleared the virus.  The info is listed on the research forum :  http://forums.hepmag.com/index.php?topic=2383.0.

I just wanted to let you know you aren't alone as there are a couple others with the same results and you shouldn't panic.  I go in for my next blood work again on the 20th so will post my results at that time.  Hopefully the little buggers haven't started to replicate but it is just a waiting game at this time.  Be sure to let us know how your 2nd test came out.

Good luck to you and hoping we all get rid of this alien parasite once and for all!

Katie
Title: Re: Harvoni Side effects
Post by: Katie on April 10, 2015, 01:36:52 pm
Joseph:  Welcome!  I would check with your doctor or call Gilead on the meds you are taking.  I think if you can go without, that is the best practice while on treatment, as you want to limit anything that may give your liver additional work.

David: Sorry to hear about the blurred vision and digestive issues.  I know I had a real sweet tooth while on treatment and found I did better if I ate smaller portions throughout the day.  I would break the meals up eating a vegetable or salad and in an hour or two have some protein.  I felt better doing that than trying to digest a regular meal at one time.  Hope you improve and your test comes back with good results.  What week are you at?

Take care and Blessings to both of you!

Katie
Title: Re: Harvoni Side effects
Post by: Davidlm1 on April 10, 2015, 04:11:44 pm
Hi Katie,
Thanks for the suggestion about breaking the meals up.  Worth trying, for sure.  I've just started the infamous week 5.  Having had side effects pretty much daily up to this point I'm hoping to go the opposite way here and not have any.  But as I've said, the end is worth it if I can wind up free of this nasty disease!  Having now started developing cirrhosis, it is most definitely time for it to go.  Even more so as I don't drink or do other things that will result in cirrhosis.  Time for it to go.  Thanks and have a great rest of the day.  David
Title: Re: Harvoni Side effects
Post by: Karen1124 on April 10, 2015, 07:45:17 pm
Hi Katie,
Thank you for your response and the link that was very interesting but it is disappointing we both wanted to be UD! Then I guess the best thing we can hope for is that they dont multiplie. I will have my second test results in a couple days I'll post the results! Good luck on the 20th!! Keep us posted. Life is good! Karen
Title: Re: Harvoni Side effects
Post by: Katie on April 10, 2015, 08:02:15 pm
Good news today Karen.  Dragonslayer (Paul) got his 11 week test results and is now UND!  At EOT he was at 29, 4 weeks later <15 and cleared at 11 weeks, so we are right behind him and will overcome!  Awesome news and I have my fingers crossed.  Not much else I can do!

Yes, life is good!

Katie
Title: Re: Harvoni Side effects
Post by: Karen1124 on April 10, 2015, 09:03:22 pm
Hi Katie,
Wow!! That is good news!! So we still have shot at UD!!

Congrats Dragonslayer!! That is great news!!
Katie and I are on or way to join you in your Happy Dance!
Life is good!
Karen
Title: Re: Harvoni Side effects
Post by: Katie on April 10, 2015, 10:01:34 pm
Hi Katie,
Wow!! That is good news!! So we still have shot at UD!!

Congrats Dragonslayer!! That is great news!!
Katie and I are on or way to join you in your Happy Dance!
Life is good!
Karen

We most certainly do!  The study I mentioned was small but they had 6 people who came with detected but less than the countable virus and they all cleared at week 12, so it isn't the time to give up hope!  We'll do it!

Enjoy your evening!

Katie
Title: Re: Harvoni Side effects
Post by: Lynn K on April 10, 2015, 10:42:09 pm
Hi Joseph

also here is a link to the prescribing information sheet that comes with every prescription. That little paper everybody throws away.

Page 5 has the list of known Drug Interactions

http://www.gilead.com/~/media/Files/pdfs/medicines/liver-disease/harvoni/harvoni_pi.pdf

Did you provide your doctor with information of all medications you are taking when they prescribed treatment? They should have discussed with you any concerns at that time but you definitely need to have this question answered bu your doctors office.

Good luck on treatment
Title: Re: Harvoni Side effects
Post by: MEG on April 11, 2015, 05:35:07 am
Quote
Good news today Karen.  Dragonslayer (Paul) got his 11 week test results and is now UND!  At EOT he was at 29, 4 weeks later <15 and cleared at 11 weeks, so we are right behind him and will overcome!  Awesome news and I have my fingers crossed.  Not much else I can do!

Yes, life is good!

Hi dear Katie, PAUL(!!!)

I'm just learning about your UNDETECTABLE results Paul and I couldn't be happier for you. I hate to tell you, "I told you so,"
but this is the kind that I gladly with with joy, will repeat! "Told you that we're rooting for you to be UND and there you are!

You have a special place in my heart because you were the first person I met here who had that most disappointing of EOT results and have been hoping/praying that your body would kick those last few buggers out....and they did. Praise God...

Katie, you're next!!!!!! Holding you in the light of healing until you learn that you too are UND!  Meg.
Title: Re: Harvoni Side effects
Post by: SunIsOut on April 12, 2015, 09:58:21 am
Hi Everyone!  My energy levels continue to be very good.  I have been working on the deck, gazebo and landscaping for the last two weeks where I worked all day yesterday painting.  I am no doubt tired at the end but that is not Harvoni just hard work. 

My appetite too has been greater than normal where I do eat way more than before.  I pretty much have my yogurt berry breakfast, good lunch and lighter fare in the evening.

Today, 10:00am I will start staining the deck, and painting gazebo, cleaning grill till about 3:00pm than I will head out to help a friend get the sails put back on his boat!

I do think you have to have positive thinking, a little bit of coercing yourself to do something.  I still have the tinnitus, funky vision but blazing forward.

There is that ol saying "Argue your limitations and surely their yours"  so make it good folks!!  :)
Title: Re: Harvoni Side effects
Post by: mario555 on April 12, 2015, 10:40:56 am
Sunisout. Thanks for your feedback, I love to hear the "after treatment effects" of Harvoni. You seem to be in better physical shape than how you were before treatment. I sure hope it will be the same for me!
I am now in my 22nd week of treatment with only 17 pills left out of 168 pills!! I have not been tested since week 8 because no matter what happens, I want (need) to finish the full treatment. My side effects were strong at week 6 to 10 and even worse at week 16 to 18. I can't wait to be finished with this sh...
Please keep us updated on your health over the next couple of months.
Lynn K. I guess I precede you by 5 days?
Title: Re: Harvoni Side effects
Post by: BeWell on April 12, 2015, 03:13:55 pm
Hello friends in pain. I've been silent visitor here for three months since started Harvoni treatment. This is my second attempt to get rid of little buggers. Three pills left, after 4 weeks VL was still detectable which makes cure questionable. Will see. For now just wanted to share my side effects because it helped me a lot to read about other people experiences. Much more and better info than my doctors provided.
  Headache (bad but not prolonged)
  Dizziness (quite bad)
  Lightheaded
  Runny nose (light but all the time)
  Flared and bleeding hemorrhoid
  Hot flashes (thought I was done with menopause symptoms but right after the first   pill hot flashes started again with more intensity and frequency )
  Problem with teeth
  Ringing in my years
Pain in liver area
  Problems with memory, concentration (interfere with my job functions)
  At the beginning of treatment feeling of a racing or pounding heart beat
  Fatigue
  Growling stomach, gas
  Itchy patches of skin
  At the beginning was terribly irritable and short tempered
  Depression got better after couple years post treatment but now it's getting worse again
..............................
After failed first treatment with RIBA/pega/interferon had really bad problems with my hands. Swelling was especially bad at night. Joints swollen and extremely painful. Couldn't use thumbs at all. My doctor recommended Osteo Bi-Flex and I've got my hands back! Stopped taking pills not to interfere with Harvoni but make a note of this if you have similar problems.
Like many others I'm very interested if Harvoni's side effects are temporary or permanent damage is done. First treatment left me with destroyed thyroid, damaged memory and concentration... And virus came back...
I do hope that all of it will bear some good fruits.
Those who created and maintain this site and shares so much information and love and support - thank you!
Be well everybody !
Infected in 1995 from blood transfusion
2010  - first treatment, responded quickly, relapsed
2015/1/22 started Harvoni
4 weeks VL < 12 detected
Title: Re: Harvoni Side effects
Post by: 41HAPPY61 on April 12, 2015, 03:52:52 pm
Has anyone experienced bizarre dreams??
Title: Re: Harvoni Side effects
Post by: Lynn K on April 12, 2015, 06:27:33 pm
Hi Mario

We are in the home stretch! Year 5 or 6 days last pill May 4th.

Hi 41Happy and welcome

I think maybe our systems are a little fired up so maybe we are a bit more awake when we are sleeping. I have a few more what I call intense dreams. It kinda reminds me of when I was using the patch when I was quitting smoking. Wearing the patch while sleeping and having my nervous system stimulated by nicotine when normally it is not.

I just think it is kinda interesting
Title: Re: Harvoni Side effects
Post by: dragonslayer on April 12, 2015, 11:35:15 pm
Hi dear Katie, PAUL(!!!)

I'm just learning about your UNDETECTABLE results Paul and I couldn't be happier for you. I hate to tell you, "I told you so,"
but this is the kind that I gladly with with joy, will repeat! "Told you that we're rooting for you to be UND and there you are!

You have a special place in my heart because you were the first person I met here who had that most disappointing of EOT results and have been hoping/praying that your body would kick those last few buggers out....and they did. Praise God...

Katie, you're next!!!!!! Holding you in the light of healing until you learn that you too are UND!  Meg.

Hi Meg... I was the first person I met here, too, that was detected at EOT!  I was telling everybody who knew of my condition that I had failed treatment, and I truly believed I had.  I just couldnt understand how with odds of approx. 95% in my favor, I could have possibly failed.  And, I didnt understand how a detected at EOT result could ever result in SVR.. . After all, if Harvoni didnt kill the virus, then how could it possibly clear AFTER Harvoni, that which has been assaulting this virus every day for 8 wks, is withdrawn??

Then, folks like you, and Mike, and others started telling me that this still might clear.  I didnt see how,  since experience with older treatments showed that any virus left at EOT would rapidly replicate to a VL level similar or greater than it had been before treatment.   

The key data for me was when Spitzbar put out that link for the  blog that displayed the data for the study that found all 6 detected patients at EOT went on to SVR12.  Thats the first time I saw real world results that this can actually happen.  I cant tell you how much that did for my outlook.  Then I learned that Gilead themselves used a test where LLOQ was < 25 to determine SVR.  More encouraging data.   Then, when I tested at 7 wks post treatment and it came back detected but < LLOQ(12), I really started to believe, and finally, the 11 wk test confirmed the excellent progression.  I dont know enough about earlier treatments, but for Harvoni, it really seems that UND at EOT is not a prerequisite for becoming SVR!   

I hope that all others experiencing a similar EOT fate see these posts and links contained herein, so as to not have to endure the mental torture that comes from assuming a failure where none exists!
Title: Re: Harvoni Side effects
Post by: Karen1124 on April 13, 2015, 10:26:22 am
Hi Everyone,
On April 2nd I had EOT blood work done and my viral load came back less than 15 they had me repeat the test on April 9th and that test came back undetected! The doctor thinks it was a lab error! Waiting for all clear on June 24th!! Have a Great day everyone! Life is good!!
Karen
Title: Re: Harvoni Side effects
Post by: dragonslayer on April 13, 2015, 10:44:16 am
Hi Everyone,
On April 2nd I had EOT blood work done and my viral load came back less than 15 they had me repeat the test on April 9th and that test came back undetected! The doctor thinks it was a lab error! Waiting for all clear on June 24th!! Have a Great day everyone! Life is good!!
Karen

CONGRATS!!!!!!
Title: Re: Harvoni Side effects
Post by: Defendo on April 13, 2015, 12:29:07 pm
Greetings,

I just start Harvoni on April 1.  I previously did 6 months of interferon and ribavirin, but did not respond to the treatment. But the side effect were totally devastating for me. 

The side effects of Harvoni so far are mild in comparison so far, but since my frame of reference is my past tx, I am having a lot of anxiety.  The other side so far are Sleepiness and lack of motivation, nausea, and headaches.

On my 8th day of treatment my knee became very sore and later that day became red and hot. It appears to be a form of gout. I have experienced gout before, so I was aware that sour cherry juice can help.  I also took ibuprofen for the inflammation. It appears I was able to prevent my knee from getting any worse and it has improved dramatically. However there still is some slight pain in one specific spot.

I read the literature on Harvoni from Gilead and there is some indication that less than 2% experienced some form of arthritic side effects from Harvoni.

Does anyone have any information regarding gout and Harvoni or has anyone has a similar experience?

J
Title: Re: Harvoni Side effects
Post by: Katie on April 13, 2015, 01:03:08 pm
Hi Everyone,
On April 2nd I had EOT blood work done and my viral load came back less than 15 they had me repeat the test on April 9th and that test came back undetected! The doctor thinks it was a lab error! Waiting for all clear on June 24th!! Have a Great day everyone! Life is good!!
Karen

What GREAT news Karen.  I'm doing the HAPPY DANCE for you right now!  Wooo Hoooo!
Title: Re: Harvoni Side effects
Post by: EleanorB on April 13, 2015, 01:26:56 pm
Hi Folks,

It's been a while and I thought I should write based on some of the postings I have seen.

The main reason our side effects "come and go", like the days when some times you are just too fatigued to do anything, probably has to do with the viral replication cycle, which is about 3-5 weeks. When the virus starts to replicate and the Harvoni does it's job buy interrupting the cycle, perhaps that's when the side effects peak.

I get nausea about 2-3 hours after taking the Harvoni, which may be because that's when the concentration is highest in my system - like many, this is helped by drinking lots.

Re the cardiac side effect profile, I have seen postings re higher blood pressure, but I have had open heart surgery 2x (bicuspid aortic valve and aneurysm of the ascending aorta) and have noticed no increase in blood pressure. I'm going in for my 6 month check (I have another, moderate aneurysm near the aortic arch above my graft that has to be monitored) and I'll let you know if they see any changes. Will be impossible to tell if Harvoni is the cause, though).

Yes we are all guinea pigs to a certain degree, but by the end of 2015, there will be enough data from all of us to be much more certain of the Harvoni outcomes and side effect profiles. I'm happy to serve as well.

And finally, I got my 4 week labs and I'm UND, so keep your fingers crossed for the rest of the treatment to be equally successful!

And REALLY Finally, May is National Hepatitis C Awareness month. Please be aware that only $6 million dollars were raised last year for all liver diseases - and we know that at least 3.2 million Americans suffer from Hep C alone. Everyone has heard about the Ice Bucket Challenge for ALS. Only 30,000 people suffer from ALS which is indeed a terrible disease and $115 million dollars were raised by the Ice Bucket Challenge. That's great, but it means $3,833 per person with ALS vs $1.87 per person with HepC, even excluding all others with liver disease. We need to change that, so get out there, join a Liver Life Walk sponsored by the American Liver Association in a city near you and spread the word.
Title: Re: Harvoni Side effects
Post by: Bituman on April 13, 2015, 03:10:22 pm



We need to change that, so get out there, join a Liver Life Walk sponsored by the American Liver Association in a city near you and spread the word.

Right with you Eleanor.  I'm doing the Liver Walk in Phoenix next Saturday.  I'm on Team Mayo. 

Bob
Title: Re: Harvoni Side effects
Post by: Karen1124 on April 13, 2015, 05:18:34 pm
Hi Katie and Dragonslayer,
Thank you both for the well wishes! OK Katie l will be looking for your results around the 23rd of this month!! We can all do Happy dance together! Prayers to all! Life is good!!   Karen
Title: Re: Harvoni Side effects
Post by: moma on April 13, 2015, 07:45:55 pm
defendo,
I was so surprised by your post. Yes, I have experienced gout like symptoms in my big toe and throughout my whole foot. Never having gout I chalked it up to aging!
But now that you wrote about your knees I'm going to evaluate. Sorry to heard about your pain.
MoMa
Title: Re: Harvoni Side effects
Post by: Defendo on April 13, 2015, 08:27:55 pm
moma,

Thanks for your reply.  I have a feeling this may be more common. The "gout" in my knee feels exactly the same as when I have it in my toe. But my knee never swelled. It is still slightly sore today.

There are two kinds of gout

Common gout is caused by too much uric acid. The toe is the most common site of gout.

Pseudogout is caused by formation of calcium pyrophosphate (CPP) crystals in the cartilage, which is later followed by the release of crystals into the joint fluid. (WedMD)

Pseudogout usually manifest in the knee or wrist.  I suspect I have pseudo gout in my knee.   

Peace,
Jay
Title: Re: Harvoni Side effects
Post by: hc on April 14, 2015, 12:47:01 pm
Hello, I posted here earlier and would just like to update readers regarding what my 80-year-old mom experienced while on Harvoni. Toward the end of the 12-week cycle she began to experience extreme confusion, memory loss and other symptoms of HE. However, her liver functions were normal and her amonia was not high. A few weeks before that she went into the hospital with congestive heart failure due to fluid in the lungs and low oxygen, but this was resolved. With 6 pills to go, my mom took a terrible turn for the worse, and became so confused and lost so much memory that she had difficulty getting out of bed to have breakfast, would not take her medicine, spoke less and less, and finally ended up in the hospital in a coma. She had every test (MRI, spinal tap, CT scan, blood work, X ray, EEG, etc.) and the doctors could find no physical cause for the confusion, memory loss, and coma. Her liver function counts apparently did not explain it, nor did any other physical indicator. Thankfully, my mom did wake up from the coma a few days ago. At first she was awake and could not speak but the next day she was able to speak and had a lot of confusion and memory loss but could remember more than she could when she went into the hospital. For a couple of days she experienced hallucinations, which now seem to be abating, and her memory is returning little by little.

Although my mom is 80, this was not Alzheimers or dementia. It was a sudden decline of memory. She was in relatively good health and her mind was sharp and clear until a few weeks before she lost her memory and went into a coma.

In the trials conducted to test the safety and efficacy of Harvoni, only a very small percentage of the patients were over 65, let alone 80. The Canadian study (available on Gilead's Canadian website) indicates that less than 2% of patients had memory loss and other neurological conditions (could this number have been higher had there been more elderly participants?). An article in the New England Journal of Medicine indicates that one patient developed hepatic encephalopathy as an adverse result of taking Harvoni. Several of the doctors who are treating my mother feel that her condition may have been either a side effect of the Harvoni or a side effect of interaction between the Harvoni and other meds that she takes for a pituitary tumor that she has had for years (parlodel and other meds for hormone replacement). The effects were not caused by the pituitary tumor itself.

I wanted to post my mom's experience here as a warning to others who may be older or who are on meds for a pituitary tumor and who are considering Harvoni.
Title: Re: Harvoni Side effects
Post by: dragonslayer on April 14, 2015, 01:28:07 pm
HC,  Im so sorry to hear about your mom.. Pretty scary stuff.  I think it is always important to remember when looking for causes, that  Correlation does not imply Causation.   While its probably possible your mom's condition was a direct result of Harvoni, nobody really knows, and therefore, while others should be alerted to a possible relationship, I dont think they should be warned off of taking Harvoni until a proven causation exists.   

I feel that there are already plenty of people who are considering treatment but have not pulled the plug due to their fear of side effects, which the majority of patients never experience...   Id just hate to add to that number, when so many are being helped immeasurably by this treatment.
Title: Re: Harvoni Side effects
Post by: SunIsOut on April 14, 2015, 01:33:43 pm
HC,  Im so sorry to hear about your mom.. Pretty scary stuff.  I think it is always important to remember when looking for causes, that  Correlation does not imply Causation.   While its probably possible your mom's condition was a direct result of Harvoni, nobody really knows, and therefore, while others should be alerted to a possible relationship, I dont think they should be warned off of taking Harvoni until a proven causation exists.

I do not think this was implied rather an elder patient also taking a certain heart medication (pituitary tumor) that could potentially have a combined side effect.  It is just a way to log a certain happening and should be taken as informational without opinion.  ;D
Title: Re: Harvoni Side effects
Post by: dragonslayer on April 14, 2015, 01:39:48 pm
I do not think this was implied rather an elder patient also taking a certain heart medication (pituitary tumor) that could potentially have a combined side effect.  It is just a way to log a certain happening and should be taken as informational without opinion.  ;D

Hi Sun... it was posted as a 'warning' if you read the text.. I think its fine to log data and incident reports.. But until an association is proven, Id be reluctant to warn people, even elderly people as some of us already are, off taking this generally safe and effective medication.. And no, Im not a Gilead employee; I just play one on television.  Perhaps 'warn' in the text was too strong a word, but I took for what it was..


I feel that there are already plenty of people who are considering treatment but have not pulled the plug due to their fear of side effects, which the majority of patients never experience...   Id just hate to add to that number, when so many are being helped immeasurably by this treatment.
Title: Re: Harvoni Side effects
Post by: coloradogirl on April 14, 2015, 03:14:30 pm
I am sorry your mom has to go through these challenges.  I hope that the medicine worked for her, and she gets better soon. I think your input is important, and even if it has never been reported as a side effect, who knows what baring it has on the drug and it's interactions.
 
I think it is quite possible, and I would hope, that researchers from the drug companies and concerned entities watch these threads to gather data on these treatments.  It would be foolish to ignore these postings.  If there is a pattern that emerges, the data could then guide the criteria for monitoring and treatment.

Keep the reports coming, ya'll!
Title: Re: Harvoni Side effects
Post by: dragonslayer on April 14, 2015, 03:30:31 pm
Colorado, I agree. Its important to report SUSPECTED symptoms. However, please realize that its not technically a 'side effect' until there is a proven association between the causative agent and the suspected  symptom.. Until then, its a 'reported' symptom' or a 'suspected side effect'.   Again, correlation does NOT imply causation, and its a huge error to think that it does.  Some of the so called side effects reported in this thread may turn out to be true side effects; many undoubtedly will not...  We wont know until the association is tested in a double blind study and the connection clearly established.
Title: Re: Harvoni Side effects
Post by: Lynn K on April 14, 2015, 03:50:39 pm
I doubt the FDA is monitoring Internet chatter if you have a side to report it is listed with the prescribing information sheet

-------------------------------ADVERSE REACTIONS-----------------------------
The most common adverse reactions (incidence greater than or equal to 10%, all grades) observed with treatment with HARVONI for 8, 12, or 24 weeks are fatigue and headache (6.1)
To report SUSPECTED ADVERSE REACTIONS, contact Gilead Sciences, Inc. at 1-800-GILEAD-5 or FDA at 1-800-FDA-1088 or www.fda.gov/medwatch.

http://www.gilead.com/~/media/Files/pdfs/medicines/liver-disease/harvoni/harvoni_pi.pdf
Title: Re: Harvoni Side effects
Post by: Defendo on April 14, 2015, 04:27:51 pm
I am sorry and I know I am new here.  But I am not new to HCV or to the side effects of HCV drugs.

Dragonslayer is simply wrong. He is trying to quantify side effects when each individual will react differently to this powerful medication.

I did Peginterferon and ribavirin. I waited until Peginterferon was approved and was one of the first to use this treatment protocol through the University of Miami.

At the time Peginterferon was approved, the SVR was indicated to be around 50%.  But time went by it was found that SVR for genotype 1a was really only around 30%.

During the first year Peginterferon after Peginterferon was approved, more and more side effects were documented that were not initially reported .

So dragonslayer is playing with semantics. Using words like "suspected" and "technically".  If you are feeling side effect symptoms that you have never experienced before, than it IS a side effect, whether causation is proven or not. 

I have a history of gout in the toe. However, after a week on Harvoni I began experiencing join pain in my knee, that was similar to gout.  I do not know if the Harvoni caused this knee pain or not.  But my doctor says he has not seen this as a reported side effect.

However, there are plenty of patients reporting joint pain while on Harvoni, especially in the beginning of tx.

http://treato.com/Harvoni,Joint+Pain/?a=s (http://treato.com/Harvoni,Joint+Pain/?a=s)

I admit that I do not know dragonslayer's HCV history, but according to his profile, this appears to be his first attempt at tx.  He is fortunate that he is not having a difficult time. But remember that other people react differently and we should have compassion for those who have a difficult time with this medication.  Some people have to discontinue Harvoni because of complications with side. Although Harvoni was approved, it is still an experimental drug and we are the guinea pigs.  Our input is important to those who will take this drug behind us.

The approach dragonslayer is advocating is flawed.
Title: Re: Harvoni Side effects
Post by: Davidlm1 on April 14, 2015, 04:37:27 pm
Writing in today to report that 5th week mass of effects.  Got hit with fatigue to the point of it hurting, having double vision, brain is fogged and having about every effect I have read about.  I'm hoping this is the diseases final charge and the Harvoni is giving better than it's getting.  Waiting on my first lab results since starting this and hoping for good news.  Hoping everyone is either bouncing forward or hanging in.  Keeping the focus on the result and not the journey these past couple days.  Toughest part of it!
Title: Re: Harvoni Side effects
Post by: dragonslayer on April 14, 2015, 04:58:41 pm
>>The approach dragonslayer is advocating is flawed.<<

Defendo,

Really?? .... Youve offered up nothing to disprove anything Ive said.   On treatment, I had 2 colds and one bout of stomach distress accompanied by fever, which lasted 24 hrs and then disappeared. Im not going to call them side effects.. There's just no evidence that these things had anything to do whatsoever with my Harvoni treatment.. If you go through the litany of 'side effects' reported in this thread,  if you think every one of them is a bonafide effect of the drug, you are sadly mistaken... The fact that people often report psychosomatic results from a given stimulus  doesnt mean they are bad people; only that we have different ways of responding to the same stimulus..   Im not saying what people are experiencing on treatment is not real; only that the cause is unknown in most cases.... If you were right, then there would be absolutely no point in doing double blind studies with the inclusion of a placebo..  The very fact that these studies exist proves that checks and balances are required to rule out just this type of effect.  Oh, and by the way, in case you hadn't heard, Harvoni is not Interferon.   More fallacious reasoning in assuming that what was true for one is true for the other!

Without science, its all just noise and hearsay.
Title: Re: Harvoni Side effects
Post by: Defendo on April 14, 2015, 05:07:03 pm
No kidding.  Have you done interferon.  I know there is a big difference from personal experience.

The point is that whether the side effects are pyschomatic or undocumented, it does not diminish the impact of the side effects on the patient. SO THEREFORE IT IS A SIDE EFFECT.
Title: Re: Harvoni Side effects
Post by: dragonslayer on April 14, 2015, 05:10:03 pm
No kidding.  Have you done interferon.  I know there is a big difference from personal experience.

The point is that whether the side effects are pyschomatic or undocumented, it does not diminish the impact of the side effects on the patient. SO THEREFORE IT IS A SIDE EFFECT.

No, it is a  very real effect the patient is experiencing.. Whether or not it is due to Harvoni is what we are debating.. One more time: Correlation does NOT imply Causation. Because a symptom arose during the taking of Harvoni is NOT an indication that Harvoni had anything to do with it.. If nothing else, that is the main point of what Ive posted today.... Once more: double blind studies with a placebo are required to prove causation.  Short of that, at least a statistically significant correlation would have to be observed under similar circumstances.
Title: Re: Harvoni Side effects
Post by: MEG on April 14, 2015, 06:04:05 pm
Hi Paul, I'm just seeing your response to me re: your SVR.

I'm so glad you stuck around here to get the emotional support and all the information, that I too, hope that others(it could be me next week) will access when faced with similar results.....

How are you feeling, physically, btw? Have you noticed any changes now that you're 3months off Harvoni?

Continued hope for even more healing to you. Meg.
Title: Re: Harvoni Side effects
Post by: Defendo on April 14, 2015, 06:09:35 pm
Well Paul,

At least we can agree that we disagree.  :D

Be well!

Jay
Title: Re: Harvoni Side effects
Post by: Defendo on April 14, 2015, 06:16:00 pm
Paul,

I am sorry, but I have one last comment.

When I was doing interferon and Riba, I experience a wide variety of side effects, many which were considered not caused by the tx.  However, years later, these side effects were acknowledged as being caused by the tx.  As one example in many, no one knew that interferon was associated with thyroid damage.  Later studies showed a correlation.  As result many patients that took interferon now experience long term effects of thyroid dysfunction.

So just because the science has not caught up with reality is not reason to discount causation.

Peace,
Jay
Title: Re: Harvoni Side effects
Post by: MEG on April 14, 2015, 06:31:01 pm
Defendo, hi!

Re: side effects. I think that any sensations, experiences we're having should be reported to our doctors or the FDA system. They can then look at all of them, in totality, look at the patient charts to look for clues re: was this Harvoni-induced or not. Goes for every drug...

For example, I had terrible colds which turned into sinusitis after Harvoni. My fatigue was almost unbearable at times. I'm just beginning, during my last week of Harvoni therapy, to feel stronger. But also Spring is advancing, viruses are moving to the Southern Hemisphere, etc.... Was it the Harvoni? Was it that it was winter time and I am vulnerable to bouts of sinusitis combined with Harvoni?  Or was it just bad luck?

We'll never know. My doctors have this data and eventually they and the scientists will come up with them...

I do think it's dangerous, and this is where I agree with Paul(Dragonslayer) for someone to come here and post a warning about a side effect and state it in a way that blames Harvoni.  Because there are some people who lurk these boards who don't have great medical care, don't have the support systems in place to help them filter what is utterly true . And like Paul, would not want to see someone turn down a 95% chance of cure because of internet postings of people's opinions....

Wishing for us all the Grace of a cure and healing.

Meg.
Title: Re: Harvoni Side effects
Post by: Defendo on April 14, 2015, 06:49:41 pm
Hello Meg!

I understand where you are coming from.  I have horrible allergies to tree pollen and was suffering from those symptoms when I started Harvoni two weeks ago.  So I was very mindful that my allergy symptoms were separate from any effects from Harvoni.

I had a terrible experience with interferon tx and I had decided that unless something new came along, I would rather die of liver disease than go through 6 months of shear hell again.

Even with my past experience, I decided to take Harvoni just because of the 95% chance of clearing the virus for good.   

So I agree that people should not be discouraged from this miracle drug. But at the same time, just because specific sides have not been documented in clinical studies, it does not mean they do not exist. It is best to have an open mind and to be honest.

As a closing comment, I would point out that since Harvoni has been approved, it has become an issue whether Harvoni can have fatal consequences if taken with certain heart medication.  That is now a warning issued by Gilead Sciences about this issue. I have also read that there could be a risk for those people taking beta-blockers. 

So the point is that people who decided to undergo tx should have full disclosure  of possible side effects and the consequences. The issue with heart medication is not yet correlated with the use of Harvoni, but if I was a patient taking the heart medications suspected, I would want to know. 

Peace,
Jay
Title: Re: Harvoni Side effects
Post by: KimInTheForest on April 14, 2015, 07:04:45 pm

When I was doing interferon and Riba, I experience a wide variety of side effects, many which were considered not caused by the tx.  However, years later, these side effects were acknowledged as being caused by the tx.  As one example in many, no one knew that interferon was associated with thyroid damage.  Later studies showed a correlation.  As result many patients that took interferon now experience long term effects of thyroid dysfunction.

So just because the science has not caught up with reality is not reason to discount causation.

Peace,
Jay

Right on, Jay. It is surprising to me the way some individuals on this forum feel compelled to dismiss and invalidate every instance of a not-yet-recognized side effect that other individuals on tx know they are experiencing. NOBODY (and certainly nobody on this forum) knows my own body as well as I do. And while "science" may not yet have enough data points to prove correlation, that is really irrelevant if our own knowledge of our body tells us a correlation does indeed exist. It is  very closed mind indeed that forever seeks to dispute and invalidate the reality of what someone else knows is happening in his/her own body - and yes, I am referring to the knowledge of causality. Knowledge comes from MANY places and through many modalities - not just a data set on a page.

Wellness to all and respect for the Truth that each of us is able to discern for ourselves within our own skin,
Kim
Title: Re: Harvoni Side effects
Post by: MEG on April 14, 2015, 07:09:57 pm
Hi Jay,

I'm so sorry you had to go thru ifn therapy. For various reasons I was ineligible.   And you're right, it did indeed take quite a while, the accumulation of  patient experiences, for some of the side effects to be attributed to it....

And I think we agree much more than we disagree. I think that Paul and I were responding to the nature of the tone of the post. Warning: etc......

The reason we know about the amiodorone side effect is because people reported them to their doctors. Were getting good followup care. And when a critical mass of effects accumulated, Gilead was able to put out that warning....and that's what I'm getting at. Send any concerns to your doctor, to Gilead, to the FDA where they can evaluate them.

But issuing warnings on a message board based on one experience is not helpful. Describing the experience, of course, I want to learn about it....and file it away for the future.

And another issue? Drug companies are competing fiercely. There are Gilead investors and AbbVie investors that lurk and I know some subscribe to these boards......Which is why information, warnings, etc.,  has to be filtered, knowing all these other factors. And some people simply don't have the time, the resources to explore all this...

Best of luck in your road to a cure, Jay. We all want what's best for ourselves and fellow HCV warriors...
Meg.
Title: Re: Harvoni Side effects
Post by: hc on April 14, 2015, 07:41:27 pm
I really did not expect my message to generate an argument. I am posting one more time in hopes of redirecting this conversation in a more productive way.

I initially posted in hopes of providing information about a possible and serious side effect since there has not yet been much scientific data produced regarding the effects of Harvoni on older patients (in their 80s), who process medicines differently than younger patients and are more likely to be taking multiple medications and who were not included in proportionally large numbers in the trials. Also there have been no studies according to Gilead (we have contacted them) on possible drug reactions between the pituitary medicine and Harvoni. Memory loss was a side effect that was experienced by less than 2% of patients in the initial clinical trials (see Gilead monograph on their Canadian website). If anyone on this list has information about scientific studies that I do not know about that address these issues, I would love to hear about it.

My family cannot wait for new double blind scientific studies to be done or for more studies to be done on patients in their 80s, and neither can my mother's doctors, who have to diagnose each patient based on available evidence, observation, experience, and ruling out other possible causal factors. After conducting every possible test for other causes, it is several of her doctors (and she has highly respected doctors) who have concluded that the most likely cause is either Harvoni or Harvoni interacting with Parlodel, and they have taken her off Harvoni. This does not prove that it is Harvoni or Harvoni combined with other meds that caused the confusion, memory loss, and coma, but the doctors believe it is likely and they are currently treating her based on this theory.

I posted this information not to detract from the wonderful gift that Harvoni has given to those many patients it has healed of Hepatitis C with minimal or no side effects, or to dissuade others who could be cured from taking it. Believe me, my family was elated when my mom was approved for Harvoni. Rather, I decided to let people on this list know in case there are others like my mom, who may be in their 80s, may be experiencing symptoms similar to hers, may be on pituitary meds, and may not know anyone else in the same boat. I thought it would be helpful for others to have this information about one case of a rare suspected side effect or drug interaction in order to make their own informed choices or possibly in order to learn that there are others going through what they may also be going through. Thankfully, no one else has responded thus far to say they have had this experience while on Harvoni.

When I used the word "warning" in my initial post, which seems to have created a lot of controversy, it was to warn of a possible causal effect that my mother's doctors believe may exist, not to claim that this causal effect has been proven. I hope that is more clear. Perhaps I should have used those words in the first place. It has been a difficult week.

I hope this discussion will now stop or else move forward in a more productive way. THank you to those who have posted words of support, including Dragonslayer in the first response. My family has already informed Gilead of the suspected adverse effect and we will be informing the FDA.
Title: Re: Harvoni Side effects
Post by: Lynn K on April 14, 2015, 07:53:43 pm
Hi Defendo

I did one round of interferon mono therapy 3 shots a week because that was all there was for 6 months I was a NULL responder. Then I did 2 treatments with the new SOC 6 months of Interferon with ribavirin one was in a clinical trial. Again a null responder.

I was not allowed to try telaprevir interferon and ribavirin when it was approved even begged the doctor and asked for a second opinion. The reason I was not allowed was before the drugs were approved I was diagnosed with F4 cirrhosis in January 2008. So treating with interferon and telaprevir would be too dangerous for me and odds of SVR were about 14%.

I had no treatments available to me from 2008 so during that time I have been waiting to become decompensated and become disabled from liver cirrhosis and be waiting for a transplant hoping I would get one before it was too late.

Last year I finally had a treatment I could take I treated for 12 weeks with sovaldi olysio but unfortunately when tested 12 weeks post treatment I had relapsed even though I was not detected at weeks 4 and at EOT 12.

So let me say that I would suffer through any side effect to be cured and that also except for the anemia from the Ribavirin I am taking causing me to feel basically run down and tired I feel fine.

Sure I caught the cold that was going around my community but that is not from Harvoni. Sure I had some diarrhea once or twice Harvoni or bad food? I suspect bad food.

But other than that not much different on treatment than off. If you have aside report it per the instruction on the prescribing info sheet.  They do want to know

http://www.gilead.com/~/media/Files/pdfs/medicines/liver-disease/harvoni/harvoni_pi.pdf

-------------------------------ADVERSE REACTIONS-----------------------------
The most common adverse reactions (incidence greater than or equal to 10%, all grades) observed with treatment with HARVONI for 8, 12, or 24 weeks are fatigue and headache (6.1)

To report SUSPECTED ADVERSE REACTIONS, contact Gilead Sciences, Inc. at 1-800-GILEAD-5 or FDA at 1-800-FDA-1088 or www.fda.gov/medwatch.

But whether the knee pain some have reported is Harvoni related or maybe just you twisted it a bit in your sleep or other sides some are having are truely form Harvoni or from just life in general remains to be seen

Best to all on treatment

147 days down 21 to go
Title: Re: Harvoni Side effects
Post by: Lynn K on April 14, 2015, 08:01:09 pm
hc

Thanks for bring up your moms troubles with the limited info on treating much older patients who have multiple this information is very important to the researchers.

Yeah maybe "warning" was kind of the trigger. Possible just as an FYI that if you are older or have medical problems beyond liver disease you should maintain a close connection with your doctor and be careful to monitor for side effects.

Good luck to you and your mom I hope she regains her strength soon!
Title: Re: Harvoni Side effects
Post by: Defendo on April 14, 2015, 08:52:13 pm
I will try to address each reply in one post. Please bear with me.

First, KimInTheForest is right on and understands exactly what I am saying. Thank you Kim.

Meg, Thank you also. I did not intend to be confrontational.  However, in my past experience with tx I suffered a multitude of side effects. When I reported them to my doctors, I was told that it must be something independent of the tx.  I was told repeatedly that what I reported was not "clinically proven".  I was already suffering horribly and simply wanted some support and confirmation. This type of approach only caused more suffering and distress.

Hello hc, you did not start an arguement, only a debate. It is a good debate and already  has elicited responses from others who have or had "unproven" sides. You did nothing more than provide valuable information.  Thank you and good luck to your mom.

Hi Lynn, you did not say if you experienced severe, moderate or minimal side effects while doing the previous tx.  I used to go to support groups and there was always several people there who seem to get energized and stronger while on interferon.  Some would say that they felt better than ever on interferon and could not understand what most of us were going through.  Of course I was depressed and irritated (riba rage), so eventually I just stopped going because I was afraid I would lose control of my temper.

As I understand your post, you are doing well on Harvoni and have minimal side effects.  Again, different people react differently to medications.

As for me, I am two weeks in and I am experiencing moderate, occasional headaches, occasional nausea, sporadic lost of appetite and extreme sleepiness.

The worse is that I already suffer from chronic fatigue and in the last two weeks the Harvoni seems to have exasperated the fatigue. I will ride it out and, hopefully, the fatigue will slowly diminish.  While troublesome, the sides so far are nothing like the severe sides of interferon and riba.

The major issue for me currently is the joint pain in my knee, which started on the 7th day of taking Harvoni. I could hardly walk for three days. Believing this to be gout, I began drinking sour cherry juice and my knee began to improve so that the pain is gone, but some soreness remains. So I am monitoring this condition.

Whether it is caused by Harvoni or not is what I want to know. I believe it is. I was hoping to find out if anyone on this forum experienced any joint pain. Since then I have found others who experience joint pain while taking Harvoni.

After all, the purpose of this tread is to discuss side effects people are experiencing while taking Harvoni. We should not filter or censor what we do not agree with.

This is a journey that I and many others have waited years for (14 years for me) and I am hopeful that I will finally clear the dragon from my body. I would love to have the energy and vitality I use to have and Harvoni is my silver bullet!

Good Luck to everyone!
Jay

Title: Re: Harvoni Side effects
Post by: kaemicha on April 14, 2015, 08:54:10 pm
I'm checking in and I have news. First, I want to thank Lynn and hepconder for their taking my concerns seriously. I know you all are but they have helped me with my immediate concerns.

So, I'm on week 5 and it's been pretty ok except night before last, it took me over 7 hours to get to sleep. Does this happen to anyone else? Last week, was great. This week is more challenging, much nausea, but doable. I do keep in mind what hepconder said I do believe that it is different for everyone but I'm trying to take it a bit easy..or not. I went out today, did ok..but had to come home early.

Lynn, I think you'll be happy to know that I took your advice and booked my trip to Paris!
After reading that you went to Italy while on Harvoni it made me believe that I could do Paris pretty ok. I'm going with a friend, she knows Paris and the doctor gave me the ok. His office called Monday and told me that my labs, outside of the constant low sodium, looked great! This is all so encouraging.

This forum gave me my life back and I just can't thank you all enough!

Michelle



 
Hi Michele,

Sorry for the delay and want to say that I am very sorry if I worried you. Yes weeks 5 thru 7 were the hardest for me but as you see from everyone on here the symptoms and circumstances for each individual are different.
I am in sales and having to look at people in the eyes and carry on any type of long term conversation when your head and body hurts is very hard. I would get dizzy and actually start to get a slight panic attack right in front of them. Almost ran out of the room once...LOL But I was a typical stubborn man and didn't tell anyone at work either. I finally told one person so I could cut down to 4 days a week at work and that helped.
22 pills left and the last 2 days I have been working in the yard and yesterday I hit the heavy bag for the first time in months. I know my body is going to be much stronger in just another month and then I am going to get in great shape.
Again I apologize for worrying you. I have to say also that going thru several days in a row of straight pain is not a good idea. That's what gets you depressed and anxious. I went to Colorado and got some cookies and chew one every three days or so. It makes me feel better and it kind of resets the system. I know some don't agree with polluting your body like that but the doctor also told me not to take Advil because of the damage to your liver. So I gave it up weeks 5 thru 7 even though I have been taking it for 15 years because it helps my back. As soon as I started taking it again my muscle aches got much better.
Meg you and I sound like we are on the same track and pretty much with the same effects. The tinnitus is crazy isn't it and very difficult to manage but a big Congrats to you and everyone that are getting close to finishing and clean blood!!  WooHoo!!!
Title: Re: Harvoni Side effects
Post by: Lynn K on April 14, 2015, 09:09:39 pm
Hi Jay

On the interferon I had the advertized flu like symptoms I felt like I was just getting over the flu for 6 months or felt like something the cat dragged in. I worked the whole time on all treatments except for 2 weeks on the riba my HGB got dangerously low so my doctor gave me epotin and after 2 weeks I felt better and went back to work.

Yes everyone does respond differently to medications some have more problems especially if they have other problems already like your gout. But the majority only have the mild side effects listed. Yes I had some headaches and the probably were from the Harvoni but for me they were very mild and barely noticeable and sometimes I would take a Tylenol no big deal for me.

But except for Hep c and cirrhosis I am in pretty good shape. If it weren't for those illnesses I am in good health although I could stand to lose 30 lbs and get back to the gym but waiting to get off the riba first so I can get my HGB back up to normal.

Sorry you are experiencing a more difficult treatment than others but as I have said on occasion I would walk over hot coals with glass if it would cure my hep c and give me a chance at a normal life span.

Hope treatment becomes more comfortable for you and that you recover quickly post treatment and most importantly make it to SVR forever.
Title: Re: Harvoni Side effects
Post by: Lynn K on April 14, 2015, 09:13:32 pm
Bon voyage Michelle!

À cœur vaillant rien d'impossible!

"To a valient heart nothing impossible."
Title: Re: Harvoni Side effects
Post by: dragonslayer on April 14, 2015, 09:21:33 pm
Hi Jay,

I'm so sorry you had to go thru ifn therapy. For various reasons I was ineligible.   And you're right, it did indeed take quite a while, the accumulation of  patient experiences, for some of the side effects to be attributed to it....

And I think we agree much more than we disagree. I think that Paul and I were responding to the nature of the tone of the post. Warning: etc......

The reason we know about the amiodorone side effect is because people reported them to their doctors. Were getting good followup care. And when a critical mass of effects accumulated, Gilead was able to put out that warning....and that's what I'm getting at. Send any concerns to your doctor, to Gilead, to the FDA where they can evaluate them.

But issuing warnings on a message board based on one experience is not helpful. Describing the experience, of course, I want to learn about it....and file it away for the future.

And another issue? Drug companies are competing fiercely. There are Gilead investors and AbbVie investors that lurk and I know some subscribe to these boards......Which is why information, warnings, etc.,  has to be filtered, knowing all these other factors. And some people simply don't have the time, the resources to explore all this...

Best of luck in your road to a cure, Jay. We all want what's best for ourselves and fellow HCV warriors...
Meg.

Hi Meg.. I completely agree with both you and Lynn.  The only way to get these issues and provisos regarding the dispensing of Harvoni into the prescribing media is by alerting Gilead, FDA, prescribing doctors, and possibly, the specialty pharmacies doing the dispensing.   

Meg, regarding your question re life after Harvoni, Ill simply paste in here what I wrote in response to another thread:

"Sleeping better, more energy, better mood, much clearer in the head, many fewer aches and pains including the disappearance of that sporadic but nagging upper right quadrant pain as well as what presented as tendonitis in both elbows (which also could have come from grabbing my motorcycle bars too tightly or doing too many barbell curls with too much weight), palms less red, etc .....   And that's just for starters  :) "   

 These are the major issues I found with HCV, and Harvoni has removed the lion's share of all of them.  I found Harvoni to be almost 100% free of ill effects. I experienced more headaches than normal, and occasional fatigue, but at the end of the day, Id have to call it a piece of cake.. And what Im hearing from many earlier treatment survivors, compared to that, Harvoni's a breeze.  Unfortunately, for some, this doesnt appear to be the case, and for those folks, I hope things get easier.   I wish everybody well, and a speedy path to SVR!
Title: Re: Harvoni Side effects
Post by: kaemicha on April 14, 2015, 09:23:38 pm
Bon voyage Michelle!

À cœur vaillant rien d'impossible!

"To a valient heart nothing impossible."

Thank you, Lynn. Will you come along as a translator?

Please never take Tylenol. Acetaminophen will kill our already unhealthy livers. Tell your doctor. He should know. That and alcohol, I was told never to use again.
Title: Re: Harvoni Side effects
Post by: Lynn K on April 14, 2015, 09:35:01 pm
For people with cirrhosis Tylenol is the recommended treatment for mild pain. This is what my hepatologist recommends. Tylenol is only dangerous if you exceed the recommended daily limit of 2000 mg remembering the many combo medicines like say Nyquil have a lot of Tylenol so read labels.

Advil, aleve, and aspirin are too dangerous for patients with cirrhosis because of increased gastrointestinal bleeding risk as well as renal problems associated with advanced liver disease.

And in general I don't take much in the way of pain meds.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2861975/

Pain management in patients with cirrhosis is a difficult clinical challenge for health care professionals, and few prospective studies have offered an evidence-based approach. In patients with end-stage liver disease, adverse events from analgesics are frequent, potentially fatal, and often avoidable. Severe complications from analgesia in these patients include hepatic encephalopathy, hepatorenal syndrome, and gastrointestinal bleeding, which can result in substantial morbidity and even death. In general, acetaminophen at reduced dosing is a safe option. In patients with cirrhosis, nonsteroidal anti-inflammatory drugs should be avoided to avert renal failure, and opiates should be avoided or used sparingly, with low and infrequent dosing, to prevent encephalopathy
Title: Re: Harvoni Side effects
Post by: Defendo on April 14, 2015, 09:35:18 pm
Thank you Lynn.

I've had this virus for over forty years, so I am fortunate that my liver is not decompensated.

I agree with you, the ribavirin was the worse. I could not climb two flights of stairs without huffing and puffing and wheezing when I got to the top.  And the riba rash was horrible, especially in the last 3 months.  My doctor almost discontinued the treatment because of anemia.

After I did not respond to tx, I did not just give up. I turned to alternative medicine. I began using chinese herbs and acupuncture in hopes of slowing down the liver destruction.  I even traveled to China three times and drank a tea made of raw chinese herbs. Afterwards, my liver inflammation was greatly decreased on a liver biopsy. However, I have not been back to China since 2009 and the inflammation is back big time.

I am 63 year old, so I think age plays a major role in the severity of side effects.
I got this virus in the early 70's.

Since I am only 2 weeks into tx, I am just noticing and recording any issues I am experiencing.  I will use acupuncture to help alleviate some of the sides. Like Chinese herbs, acupuncture has to be routinely done to maintain optimum "Qi".

Please understand that I am so excited to have this opportunity. I hope it is a life changing event for me.

BTW, the joint pain I am experiencing now on Harvoni is similar, but also different from previous episodes. That is why I strongly suspect it is caused by Harvoni. Time will tell and I will keep you posted.  :P

Title: Re: Harvoni Side effects
Post by: Defendo on April 14, 2015, 09:41:39 pm
Lynn,

Are you currently taking Ribavirin and Harvoni?
Title: Re: Harvoni Side effects
Post by: Lynn K on April 14, 2015, 09:59:23 pm
Yes 24 weeks of Harvoni and part way in I asked my doctor what she thought about adding riba for someone with my treatment history especially after relapsing on Sov Oly last year. So buy the time it was all approved I was starting week 9 of Harvoni.

When I finish on May 4th I will have been on Harvoni for 24 weeks and Riba 1000 mg for 15 weeks. My doctor said wish we had thought of this sooner to add the Riba
Title: Re: Harvoni Side effects
Post by: kaemicha on April 14, 2015, 10:03:10 pm
Lynn,

I appreciate your vast knowledge and know that this works for you and I'm certain you know what is best for you.
For me, with advanced liver damage, again the only thing I've ever been told not to do was take Acetamin  or drink and I don't want to ever cross that advice. I do thank you for all the information included in your post.
Michelle

For people with cirrhosis Tylenol is the recommended treatment for mild pain. This is what my hepatologist recommends. Tylenol is only dangerous if you exceed the recommended daily limit of 2000 mg remembering the many combo medicines like say Nyquil have a lot of Tylenol so read labels.

Advil, aleve, and aspirin are too dangerous for patients with cirrhosis because of increased gastrointestinal bleeding risk as well as renal problems associated with advanced liver disease.

And in general I don't take much in the way of pain meds.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2861975/

Pain management in patients with cirrhosis is a difficult clinical challenge for health care professionals, and few prospective studies have offered an evidence-based approach. In patients with end-stage liver disease, adverse events from analgesics are frequent, potentially fatal, and often avoidable. Severe complications from analgesia in these patients include hepatic encephalopathy, hepatorenal syndrome, and gastrointestinal bleeding, which can result in substantial morbidity and even death. In general, acetaminophen at reduced dosing is a safe option. In patients with cirrhosis, nonsteroidal anti-inflammatory drugs should be avoided to avert renal failure, and opiates should be avoided or used sparingly, with low and infrequent dosing, to prevent encephalopathy
Title: Re: Harvoni Side effects
Post by: dragonslayer on April 14, 2015, 10:05:32 pm
Lynn,

I appreciate your vast knowledge and know that this works for you and I'm certain you know what is best for you.
For me, with advanced liver damage, again the only thing I've ever been told not to do was take Acetamin  or drink and I don't want to ever cross that advice. I do thank you for all the information included in your post.
Michelle

Kaemicha,

What were you told to take for headaches and other pain symptoms?
Title: Re: Harvoni Side effects
Post by: Defendo on April 14, 2015, 10:08:07 pm
Interesting.  I asked my nurse if Ribavirin might be added to Harvoni during my tx and she said that my doctor did not combine the two.  But my reason for asking was because I knew some people were doing both and I did not want to use Ribavirin again. I did not want to get into tx and then have the doctor tell me he was going to add it. So I wanted this understood right in the beginning.

Title: Re: Harvoni Side effects
Post by: kaemicha on April 14, 2015, 10:08:22 pm
Kaemicha,

What were you told to take for headaches and other pain symptoms?

I've never been told NOT to take anything but Tylenol but generally am given Ibuprofen  as a substitute for Tylenol.

Title: Re: Harvoni Side effects
Post by: Lynn K on April 14, 2015, 10:10:55 pm
Michelle do you have cirrhosis?

Before I was diagnosed with cirrhosis that was what my doctor said as well but things change when diagnosed with cirrhosis that was when they said if you must take a pain med ONLY take tylenol.

Have you been checked by upper endoscopy for esophageal varicies? I had varicies that required banding and also have portal hypertensive gastropathy.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2916868/

Patients with cirrhosis are at an increased risk of gastrointestinal hemorrhage, with the most common source being gastroesophageal varices. However, there are gastrointestinal mucosal lesions typical of cirrhosis that may also bleed in these patients, namely portal hypertensive gastropathy (PHG) and gastric vascular ectasia (GAVE)

So for me bleeding is a greater risk than liver damage becomes secondary. But I do try not to take any pain meds if I can avoid it.

If you have cirrhosis do you see a hepatologist associated with a liver transplant center?

My doctor is the head of the liver center at a hospital in Seattle and a transplant surgeon.
Title: Re: Harvoni Side effects
Post by: dragonslayer on April 14, 2015, 10:12:01 pm
Interesting.  I asked my nurse if Ribavirin might be added to Harvoni during my tx and she said that my doctor did not combine the two.  But my reason for asking was because I knew some people were doing both and I did not want to use Ribavirin again. I did not want to get into tx and then have the doctor tell me he was going to add it. So I wanted this understood right in the beginning.

Ive been told some doctors are doing it for cases not unlike Lynn's, where they want to throw everything at the virus and dont want to chance another tx failure.    This despite the fact that the Gilead trials showed very little if any advantage to doing so, which is probably why your doctor didnt routinely do it. 
Title: Re: Harvoni Side effects
Post by: Lynn K on April 14, 2015, 10:17:45 pm
Hey Jay

What can I say 3 time null responder plus Sovaldi Oly relapse with cirrhosis for over 7 years I cant afford to fail this treatment. If adding interferon and telaprevir might help I would ask for those too.

If I fail I figure I may be running out of time and what treatments are left for me?

So basically failure is not an option so that was why we added the Riba. I might need that 1/2 a percentage point to beat this thing
Title: Re: Harvoni Side effects
Post by: Defendo on April 14, 2015, 10:20:35 pm
Lynn and Michelle,

I was told that Ibuprofen is safer than Acetaminophen too. My doctor is a liver specialist too.

In fact, I separated my elbow in a fall around 5 years ago. The emergency room doctor took note that I have HCV and ordered pain medication without any  acetaminophen. I was given demerol only and told to supplement with Ibuprofen for any inflammation.  At the time, I was impressed that this doctor knew the risk of taking acetaminophen with liver disease. 

Looks like another controversy... ;D
Title: Re: Harvoni Side effects
Post by: kaemicha on April 14, 2015, 10:21:18 pm
Thanks for asking, Lynn and yes, I do have cirrhosis. For the past 25 years I had the same internist that I met when I was in the hospital. He was the first to tell me about Tylenol usage as have ensuing doctors. I will say that my internist, while good-he always seemed to resent the fact that I hurt my liver by drinking and never looked further into treatment. So, when I'm trying to say is that maybe I don't have new information.

My Gastroenterology seems to be on top of it though. I haven't had my 'oscopies' yet, but he said after the Harvoni, then I do that. I don't want to (whine) but I'll do what I have to.

I have only seen my GI doctor twice, but his office does great follow-ups. I am scheduled to see him, GI doctor, this next Wednesday and now I have plenty of questions to ask him..the first one being about Tylenol!

Michelle

Michelle do you have cirrhosis?

Before I was diagnosed with cirrhosis that was what my doctor said as well but things change when diagnosed with cirrhosis that was when they said if you must take a pain med ONLY take tylenol.

Have you been checked by upper endoscopy for esophageal varicies? I had varicies that required banding and also have portal hypertensive gastropathy.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2916868/

Patients with cirrhosis are at an increased risk of gastrointestinal hemorrhage, with the most common source being gastroesophageal varices. However, there are gastrointestinal mucosal lesions typical of cirrhosis that may also bleed in these patients, namely portal hypertensive gastropathy (PHG) and gastric vascular ectasia (GAVE)

So for me bleeding is a greater risk than liver damage becomes secondary. But I do try not to take any pain meds if I can avoid it.

If you have cirrhosis do you see a hepatologist associated with a liver transplant center?

My doctor is the head of the liver center at a hospital in Seattle and a transplant surgeon.
Title: Re: Harvoni Side effects
Post by: Defendo on April 14, 2015, 10:23:11 pm
Lynn,

I wish you luck. I can not imagine what you have been through, in addition to dealing with all the complications of severe liver disease.  You are a brave warrior!
Title: Re: Harvoni Side effects
Post by: Defendo on April 14, 2015, 10:29:45 pm
Thanks Paul!

BTW, I noticed that your profile says you likely got HCV in the early 70's.  So were you part of the sex, drugs and rock $ roll generation like me that did some stupid things.

Peace,
Jay
Title: Re: Harvoni Side effects
Post by: Lynn K on April 14, 2015, 10:32:14 pm
Yeah I used to see a gastroenterologist all thing gut specialist but moved up to a hepatologist a liver specialist.

I will say the FIRST thing they did when I was diagnosed with cirrhosis was set me an appointment for an upper endoscopy plus they had me get the pneumonia vaccine usually reserved for people over 65 years old I was 50 at the time. I also was immunized against Hep A and Hep B.

No controversy about Tylenol

For folks without cirrhosis Tylenol is to be avoided to prevent liver damage. For those with cirrhosis and portal hypertension bleeding out is a greater risk so Advil (Ibuprophen), Aleve, and aspirin etc are to be avoided only leaving Tylenol in limited dosing available for pain management.

Like I said the doctor also told me to avoid Tylenol but when I was diagnosed with cirrhosis I was surprised when they said to now only take Tylenol now because of the risk of bleeding to death was greater concern than additional damage to my irreparably damaged liver
Title: Re: Harvoni Side effects
Post by: kaemicha on April 14, 2015, 10:40:55 pm
I think this shows how little is known about hep c. Harvoni is so new and I haven't been told to take or not to take anything. The first time I ever I have ever gotten a new med without warnings against mixing it with any other medicine.

I did have an upper endoscopy, when I was diagnosed 28 years ago. I need new information.

Over and out!
Michelle


Yeah I used to see a gastroenterologist all thing gut specialist but moved up to a hepatologist a liver specialist.

I will say the FIRST thing they did when I was diagnosed with cirrhosis was set me an appointment for an upper endoscopy plus they had me get the pneumonia vaccine usually reserved for people over 65 years old I was 50 at the time. I also was immunized against Hep A and Hep B.

No controversy about Tylenol

For folks without cirrhosis Tylenol is to be avoided to prevent liver damage. For those with cirrhosis and portal hypertension bleeding out is a greater risk so Advil (Ibuprophen), Aleve, and aspirin etc are to be avoided only leaving Tylenol in limited dosing available for pain management.

Like I said the doctor also told me to avoid Tylenol but when I was diagnosed with cirrhosis I was surprised when they said to now only take Tylenol now because of the risk of bleeding to death was greater concern than additional damage to my irreparably damaged liver
Title: Re: Harvoni Side effects
Post by: MEG on April 14, 2015, 10:42:20 pm
Indeed, Lynn and Michelle re: Tylenol. What you write, Lynn, is what I have been told. It does appear counterintuitive until one learns the pathophysiology of cirrhosis(as you, per usual, explained beautifully)....

I would just add that those with low platelets---which generally goes hand-in-hand with cirrhosis but not always, must stay away from aspirin and the other NSAIDS..

Caveat--check with your doctor or Gilead or specialty pharma first!
Title: Re: Harvoni Side effects
Post by: Defendo on April 14, 2015, 10:42:27 pm
I find this all interesting.  So once you are cured, which would be the best to use?

Title: Re: Harvoni Side effects
Post by: Defendo on April 14, 2015, 10:46:15 pm
My goodness, this is troubling. I have cirrhosis and low platelets and no one has told me this.  In fact, I told my nurse last week that I was using Motrin to help with the gout inflammation.  She did not say anything.
Title: Re: Harvoni Side effects
Post by: dragonslayer on April 14, 2015, 10:49:58 pm
Thanks Paul!

BTW, I noticed that your profile says you likely got HCV in the early 70's.  So were you part of the sex, drugs and rock $ roll generation like me that did some stupid things.

Peace,
Jay

ROFL... you better believe it!   Long before anybody ever heard of Hepatitis C.   We were in college, and I went to a particularly progressive liberal arts school here in the northeast.  Seemed like everybody was popping, snorting, drinking, or shooting something.   I got caught up in all the nonsense  for a few years, but managed to graduate just the same.. Here's the weird thing. I caught a case of Hepatitis B back in 71, and it was no mystery where it came from.. I turned yellow, peed brown, and had to take my second sophomore semester off to recuperate.   I was never diagnosed as Non A Non B, but I have to figure this is when I caught it... Which means I had it for 40+ years. I did a ton of drinking right into the mid '80s, so Im extremely lucky my liver is still in good shape.    Back then, we all knew HBV was a potential risk, but it never carried the stigma or serious consequences, so far as we knew, as HCV...  Back then, most of us jerky kids felt like living large and leaving a good looking corpse... Didnt think we'd ever get old.. We were really really dumb ... or to put it gentler, just young and naive, doing stupid stupid things that we knew were stupid. .. But we didnt care... we had other, more pressing concerns.. Ahh.. the Counter Culture.   Counter too good sense, that is...  Well, thats another day and another era.. Thank goodness, for most of us, its not too late....    Kids have to learn early that what they do when theyre  young can effect them for decades to come... Not that it would mean anything to most of them.. . Youth is definitely wasted on the young...   Or, the youth are just Wasted!

Rock on... Oops, I forget myself.. What year is this again?

Peace out..
Title: Re: Harvoni Side effects
Post by: MEG on April 14, 2015, 11:11:48 pm
Dear @hc

I read your entire note and please don't apologize for bringing your mom's experience here. I feel terrible for getting involved without first telling you how badly I felt that your poor mom and family went thru that nightmare---- as a nurse it was my first thought upon reading your post and then got distracted.

I'm delighted to know that she is improving. Indeed, her age, her other medical conditions, and medications make her treatment more complicated. Also because of the above, I wouldn't be surprised if her physicians ask if they can publish a paper about her experience. A case study.  It's valuable information for treating-professionals, family members the bench scientists to know.

She sounds like she's in excellent hands with your family and her physicians. As you know, too many elderly her age don't have the help they richly deserve.

I'm also glad to hear that of the 12 weeks, she only missed 6 days. Do you have a viral load yet? Please keep us posted on her progress.

To others reading this. Please know that I absolutely respect and know that we all know our bodies best and do not minimize people's symptoms and suffering. When I first arrived here I posted in a note to Katie how my own internist did not believe me when the hcv symptoms initially surfaced. It took my psychotherapist to call her and insist she check deeply for an organic cause of my fatigue/depression/sinus issues.

Re: the discussion that ensued? I agree with Jay, it got a dialogue going where ideas were shared and clarified.

Wishing your mom and family continued healing and hope.
Title: Re: Harvoni Side effects
Post by: Defendo on April 14, 2015, 11:19:46 pm
FAR OUT!

It sounds as if we had identical life experiences. I spent 1 year between high school and college living on the streets of Atlanta 1969 - 1970.  It was a great experience, but I was young and loved the wild side.  At the time I knew the risk of getting Hep B, but it did not stop me. In fact I got Hep B and got sick too. 

I continued to abuse my liver in college too.

After college, alcohol consumption was normal activity (HAPPY HOUR ANYONE). I drank pretty heavily "after hours".

You are indeed fortunate that your disease is not worse. 

But you know what, I would not change the experience for anything. I attend the first Atlanta rock festival and had one of the best times of my life with great live music and tripping the 3 days.

I would have been in woodstock, but I was in jail for possessing marijuana. The funny thing is that it was not marijuana, but rolling tobacco. Back in those days, cops did know the difference. Hard to believe today!  I wished it was marijuana, but is was the dry season (something else that has changed) and marijuana was hard to get in the summer. 

When you think about it, all though we did some stupid things, we had fun doing them!  And we had so much more freedom than young people today.  I could never get away with have the crap I did when I was young today.




Title: Re: Harvoni Side effects
Post by: MEG on April 14, 2015, 11:26:33 pm
@Defendo/Jay

Ouch---drives me nuts when I hear about some medical staff(you may have read upthread that I am a nurse), don't thoroughly know their stuff...

Indeed, I would stop taking the Motrin now. You can take this advice to the bank.

Have you ever tried Voltaren ointment? It's an NSAID that your rub into the area that hurts. 90% of it misses the liver.  I was placed on it about 2 weeks ago for a tendonitis---induced by Levaquin antibiotic!---it was a known side-effect though and my sinusitis was extremely stubborn.

Anyway, my pcp put me on it so that I would not burden my liver with the oral NSAIDs..I do not have cirrhosis and my platelets are fine----we just wanted to do whatever possible to reduce my liver's work while being treated on Harvoni..

Btw, NSAIDs like ibuprofen also go right thru the liver like Tylenol...

PS: Perhaps a call to the specialty pharmacy would help you clear this up re: which pain killer to take?
Title: Re: Harvoni Side effects
Post by: Defendo on April 14, 2015, 11:30:19 pm
Thank you Meg,

I will call the specialty pharmacy tomorrow and see what they say. I use CareMark.

I will also check with my nurse again and test her with this new information.
Title: Re: Harvoni Side effects
Post by: Lynn K on April 14, 2015, 11:31:36 pm
Hi Jay

Well I guess that is a very good question I was thinking about that as well. I mean I still have cirrhosis and a bleeding risk for the foreseeable future but also my liver is still damaged and now there is a hope it could recover.

I guess I will have to ask my doctor but my guess is that since the bleeding risk is more life threatening I would still be recommend to, if I have to take a pain med, to use Tylenol no more than 2000 mg /day and short duration use.


Michelle

Wow you were diagnosed with F4 cirrhosis 28 years ago! Do you have any complications?

I was only diagnosed with cirrhosis after a biopsy 7.5 years ago and diagnosed with hep c 24 years ago but probably have had hep c for 37 years.

I had that first upper endo with no varicies found. They did a repeat at 2 years and found grade 2 varicies, then repeated again one year later when they found the grade 3 so I had to have the bandings done.

I hope they did tell you about antacid medicines and Harvoni that is very important information.

Yeah Meg

My platelets, due to portal hypertension, causing my spleen to enlarge and sequester platelets, my platelet count has been between 80 and 90 for several years now. Again adding to the bleeding risk
Title: Re: Harvoni Side effects
Post by: dragonslayer on April 14, 2015, 11:33:28 pm
FAR OUT!

It sounds as if we had identical life experiences. I spent 1 year between high school and college living on the streets of Atlanta 1969 - 1970.  It was a great experience, but I was young and loved the wild side.  At the time I knew the risk of getting Hep B, but it did not stop me. In fact I got Hep B and got sick too. 

I continued to abuse my liver in college too.

After college, alcohol consumption was normal activity (HAPPY HOUR ANYONE). I drank pretty heavily "after hours".

You are indeed fortunate that your disease is not worse. 

But you know what, I would not change the experience for anything. I attend the first Atlanta rock festival and had one of the best times of my life with great live music and tripping the 3 days.

I would have been in woodstock, but I was in jail for possessing marijuana. The funny thing is that it was not marijuana, but rolling tobacco. Back in those days, cops did know the difference. Hard to believe today!  I wished it was marijuana, but is was the dry season (something else that has changed) and marijuana was hard to get in the summer. 

When you think about it, all though we did some stupid things, we had fun doing them!  And we had so much more freedom than young people today.  I could never get away with have the crap I did when I was young today.

Like Wow, man... Seriously, sounds so familiar..   Talk about Woodstock.... 3 days of Peace and Music....... And more acid than you can shake a stick at, and more mud... I lived through it all... I'll confess the decade from about '65 to '75 had a lot of good to it... A lot of personal growth through personal expression.    The one thing I will always regret though is going just a step too far with this..... I'll never forgive myself for dabbling in the dark side which has led me here.  The fact that Im svr at this point doesnt excuse what I did..... Other than that, it was mostly good.  Speaking of your bust, listen to this. .. I was in a VW bug with 3 other classmates, when we get pulled over for what appeared to be a routine stop.. Cop asked me for a cigarette during the stop which I gladly handed to him.  3 months later, at 4am, the cops had busted down our dorm door, and had warrants for most of us.. In my case, I was facing a class A misdemeanor for possession of a joint, which the cop claimed, is what I gave him!  Naturally, I got off... This was just another in a long string of harassment ploys against the college longhairs.   But seriously, I gave the cop a joint?   

Your story and mine sound very parallel indeed.   And just look at the bonding that's resulting from our public debate earlier in the evening!   Indeed, this has turned into quite an enjoyable discussion... . 

I didnt want to take the thread too far off topic, so returning to the very real business of people dealing with horrendous issues,  my hat goes out to all of you suffering through cirrhosis.   You are the true warriors here.. Most of you have endured more than I could ever conceive.    Its so unfortunate that Harvoni wasnt a reality before your livers advanced to the state they're in now.  Im so hoping that SVR will be achieved, and, at least, the damage halted, and, hopefully, improved over time.

And finally, to HC, I wanted to sincerely apologize to you.. Upon rereading things, my response comes off as sounding cold and callous.  i reacted hastily to the 'warning' as written in your post, and managed to pretty much disregard all the hardship you folks have been through.   I hope things go better for you and your family and that things look up for your mom... I know this has been hell for you... Hopefully, things have only one way to go from here....
Title: Re: Harvoni Side effects
Post by: Defendo on April 14, 2015, 11:37:10 pm
Paul,
I agree!
Title: Re: Harvoni Side effects
Post by: MEG on April 14, 2015, 11:57:02 pm
Thank you Meg,

I will call the specialty pharmacy tomorrow and see what they say. I use CareMark.

I will also check with my nurse again and test her with this new information.

Good. Keep us posted. And hopefully this gout will resolve itself soon.
Title: Re: Harvoni Side effects
Post by: Lynn K on April 15, 2015, 12:15:40 am
Hi Jay

Do you have any cirrhosis symptoms? Have you had an upper endoscopy to check for varicies? If you have portal hypertension and varicies, portal hypertension gastropathy, or GAVE that is when the concern about NSAIDS and bleeding really kicks in.
Title: Re: Harvoni Side effects
Post by: MEG on April 15, 2015, 12:22:22 am
@Lynn and @Jay

Quote
I guess I will have to ask my doctor but my guess is that since the bleeding risk is more life threatening I would still be recommend to, if I have to take a pain med, to use Tylenol no more than 2000 mg /day and short duration use.

I agree with you Lynn. It will take some time for your liver to regenerate enough, your other organs(portal hypertension) to normalize. But, that's all fine. After your SVR'd....your joy will be the best painkiller available. ;-)
Title: Re: Harvoni Side effects
Post by: Lynn K on April 15, 2015, 12:28:38 am
True dat! :)
Title: Re: Harvoni Side effects
Post by: MEG on April 15, 2015, 12:34:17 am
 8) 8) 8) !!!
Title: Re: Harvoni Side effects
Post by: kaemicha on April 15, 2015, 02:50:15 am
Michelle

Wow you were diagnosed with F4 cirrhosis 28 years ago! Do you have any complications?

I was only diagnosed with cirrhosis after a biopsy 7.5 years ago and diagnosed with hep c 24 years ago but probably have had hep c for 37 years.

I had that first upper endo with no varicies found. They did a repeat at 2 years and found grade 2 varicies, then repeated again one year later when they found the grade 3 so I had to have the bandings done.

I hope they did tell you about antacid medicines and Harvoni that is very important information.



Yep! 28 years ago and no follow ups. I used to live on antacids. I don't know what the problem with them and Harvoni but I've stayed away from them because I saw something mentioned on here.
Bottom line on my cirrhosis is that I was treated poorly, had no follow up on my liver. Have been continually told I have 10 years to go -- 30 years ago. And, now I have hep c. That really is almost all I know.

Title: Re: Harvoni Side effects
Post by: Lynn K on April 15, 2015, 04:02:35 am
How were you diagnosed 28 years ago with cirrhosis? Was it by liver biopsy? I believe that was the only way to diagnose cirrhosis at that time time. You might have been told you were F4. Do you have any complications of cirrhosis like swelling in your lower legs called edema or retaining a lot of fluid called ascities? Do you have an enlarged spleen? Do you have a very low platelet count below 100 or even lower?

I had liver Biopsies every 5 years after I was diagnosed with Hep C going from F1 to F2 to F3 and finally after being followed for 15 years F4 cirrhosis. Meanwhile I tried to treat my Hep C 3 different times with interferon based treatments but was a null responder.

Wow that is shocking verging on medical malpractice to just let a patient with cirrhosis wander off with out guidance unless you were non compliant with appointments but just to say yup you have cirrhosis see ya later with no further instructions that is insane to me!

Here is the link to the Harvoni prescribing information sheet that comes with every bottle of Harvoni and an excerpt of the specific information about antacids and acid reducers

http://www.gilead.com/~/media/Files/pdfs/medicines/liver-disease/harvoni/harvoni_pi.pdf


Table 3
Potentially Significant Drug Interactions: Alteration in Dose or Regimen May Be Recommended Based on Drug Interaction Studies or Predicted Interactions

Effect on Concentration

Acid Reducing Agents:

Ledipasvir solubility decreases as pH increases. Drugs that increase gastric pH are expected to decrease concentration of ledipasvir.

Antacids (e.g., aluminum and magnesium hydroxide)
It is recommended to separate antacid and HARVONI administration by 4 hours.

H2-receptor antagonists (e.g., famotidine)

H2-receptor antagonists may be administered simultaneously with or 12 hours apart from HARVONI at a dose that does not exceed doses comparable to famotidine 40 mg twice daily.

Proton-pump inhibitors (e.g., omeprazole)
Proton-pump inhibitor doses comparable to omeprazole 20 mg or lower can be administered simultaneously with HARVONI under fasted conditions.


Basically you can take Tums or Rolaids no closer than 4 hours before and 4 hours after taking Harvoni

If you take H2-receptor antagonists like Tagamet, Pepsid, Axid or Zantac as examples they must be taken at the same time you take Harvoni and 12 hours later if you need a second daily dose not to exceed 40 mg twice daily.

If you take a Proton-pump inhibitor (PPI) like Prilosec or Nexium the must be taken at the same time and on an empty stomach.

Taking acid reducing agents any other way then as described reduces the amount of the Ledipasvir component of Harvoni in you blood and reducing the effectiveness of the medicine as Sovaldi is not effective when taken alone.

They should have discussed any acid reducing medicines you are taking and given you explicit instructions on how to take correctly.

I was taking Prilosec occasionally and my nurse suggested if I can avoid taking it while on treatment that would be a good idea.
Title: Re: Harvoni Side effects
Post by: Defendo on April 15, 2015, 06:57:17 am
Good morning Lynn,

No, I do not have symptoms of cirrhosis. I had an endoscopy done about 12 years ago and it show some scarring from acid reflux.  But no varices. So maybe that is why I it has been recommended that I use Ibuprofen instead of Tylenol.
Title: Re: Harvoni Side effects
Post by: art1951 on April 15, 2015, 09:20:36 am
I finally received by 12 week post treatment checkup results.  I am still undetected and AST=23 ALT=17.  It looks like I may be over this.  I am feeling much better and have my dr appointment next week to review the next steps.  I am able to exercise again and live a somewhat normal life.  My liver was diagnosed as having fibrosis so I have given up drinking alcohol and simply don't plan on drinking again.  I never was a heavy drinker and would drink socially about 6 drinks a year.

Although I did have headaches throughout the treatment they dropped off significantly 5 days after I stopped taking the Harvoni.  My PCP had me do a CT scan and determined that I have a sinusitis and this probably was made worse by the Harvoni.  They are treating the sinusitis now.

I have been keeping up with the board but not actively.  Work has been consuming all of my time.

Thanks for the support.
Art
Title: Re: Harvoni Side effects
Post by: Karen1124 on April 15, 2015, 09:31:22 am
Hi art1951,
Congrats to you!! Hopefully I will be joining you on June 24!
Thanks for the up date! Life is good!!   Karen
Title: Re: Harvoni Side effects
Post by: bikergirl75 on April 15, 2015, 12:19:50 pm
I am new here, wish I had found this a while back!
I started Harvoni treatment 10 wks ago, and have been feeling kind of horrible. I am glad to see that I am not the only one.
I was diagnosed when I was 24 I am now 40, geno type1, I have no damage but my count is high! I have never tried any other treatment, and thank god for patient assistance programs, I pay nothing for my treatment!!!!
I have some good days and some horrible days. Headaches, nausea, body aches and foggy head! Side effects have not really gotten any better, I hate to say, but I know there is a light at the end of the tunnel and I cannot wait for this heavy burrden to be lifted off of my shoulders.
I am just happy to see that I am not the only person going thru this. Good luck to everyone, and Hopefully when I do my labs in a couple weeks I will BE FREE!!!!!
Title: Re: Harvoni Side effects
Post by: Defendo on April 15, 2015, 02:16:54 pm
Welcome bikergirl,

You are describing the exact sides I have been experiencing and I am only 2 weeks into treatment.  But I figure that these sides are nothing compared to the possibility of being virus free.

I am glad to here that you were able to get Harvoni thru an assistance program at no cost to you.  You are blessed!

I am curious.  You said that you are 10 weeks into tx, but have been undetectable yet?

Remember, all things are impermanent and you will experience this first hand when you have a SVR!
Title: Re: Harvoni Side effects
Post by: Karen1124 on April 15, 2015, 02:44:34 pm
Welcome bikergirl,
I'm sure you have read on the forum that you need to drink a lot of water if you weigh 150 divide that by 2 you need 75 oz per day. It really does make a difference! Keep us up dated as to your progress! Best wishes to all here. Life is good!!   Karen
Title: Re: Harvoni Side effects
Post by: bikergirl75 on April 15, 2015, 03:10:40 pm
Thanknyou for welcoming me. Karen I have been drinking as much water as I can!

Defendo. I have had no tests done yet. I mean since I started tx. I have to say it's nice to know someone else is having the same side effects,  one I forgot to mention is my eyesight, it has been very blurry and strained? ??!!!!
I know this med is brand new so it is hard for the docs to warn you on side effects,  but I would rather deal with these than let this disease take me young.
Also has anyone else had some pains in liver area? Or kind of forgetful??
Title: Re: Harvoni Side effects
Post by: LeftCoastGuy on April 15, 2015, 06:53:30 pm
Hello All!

Thanks for starting this thread, art1951.  I found it yesterday while searching online for information regarding what side effects I might anticipate with my beginning Harvoni.  I'd read "the literature", but I know from experience with other medications that the manufacturer only tells a part of the story.  Not that I'm suggesting they hide facts - not at all, I don't see why they would.  I just mean it's always nice to hear from those who have had real-world experience with a drug.

I don't mind admitting, I was pretty anxious yesterday, waiting for a UPS driver to show up with the meds I was to start taking.  Turns out he never did - that came this morning.  So, I'm a newbie here and to the drug.  Took my first dose at 11:30 this morning.  So far, so good.  About 90 minutes in, I felt the first wave break over me, as a sense of disorientation set in.  That increased for the next 2 hours, but has mostly subsided now.  Taking it slow, one step at a time. 

I've waited years to begin treatment.  Now that it's here, I have certain apprehensions about it.  One thing - I noticed somewhere in my reading somewhere, a person mentioned she was somewhat unsettled about "slaying her dragon", as she put it.  I have to say, that was among one of my first thoughts when I learned I'd been approved for treatment. 

I mean, I've been living with this disease for 40 years, slightly more.  It's become a part of who I am.  And, I should point out, I've been one of the lucky ones.  I've had virtually no symptoms beyond an acute hepatic episode back in the mid-70s, which lasted several months.  My disease has hardly progressed in all those decades.  My VL is well-elevated and my ALT/AST are as well.  My fibrous is minimal.  I mean, I feel truly fortunate to have done so well for so long.  I know many who haven't.  So, I felt somewhat peculiar when I got the news I'd begin treatment, and might actually get rid of this dreaded thing.  I'm not normally one to anthropomorphize things like this.  Yet I confess, I had a momentary hesitation about killing it off.  Anyone else experience anything similar?
Title: Re: Harvoni Side effects
Post by: debham on April 15, 2015, 07:18:25 pm
I've been on Harvoni for 15 days now at first I did feel a little off. You need to make sure you drink a lot of water and take your pill at the same time everyday. I feel pretty good today. I'm amazed. I too am a bit apprehensive about Harvoni being a cure because I've wait forever for this. I never had any other treatment due to every Dr. I saw said nope it wouldn't be worth the time and misery to go through the treatment because of it's failure rate. I'm type G 1a  my viral load is 2.3 mil. I'm not sure when I was infected but I've know since 2003. I do a cycle class at the local YMCA and have been able to continue to do so. I'm praying that this disease is erased from the planet. I keep my eye on the post treatment posts just because I want the reassurance. Good luck with your treatment. My side affects have been very mild.
  I'll be 61 this Saturday. One hour cycle class= 18 miles not bad for someone going through a treatment don't you think?  Drink water!!
Title: Re: Harvoni Side effects
Post by: kaemicha on April 15, 2015, 07:46:30 pm
Lynn,

I have been told nothing in 28 years except to not take Acetaminophen. Again, my doctor told me that since I had abused alcohol I would not be a candidate for a transplant. He moved to another state and it wasn't until I found a new Primary Care doctor and got pretty sick for them to get me to a Gastro-doctor. And, that took until 2 1/2 months ago and I'd already been sick since July.

And, one more thing about the Acetaminophen. I have no need to be right on this. I seldom am right but I do want to say that I've never had anyone suggest that I take Tylenol products-no NyQuil..has alcohol in it, I've talked to doctors, pharmacists, specialists. Everyone told me to stay away so I did and probably will continue to.
There used to be ads, not long ago, that exposed (?) Acetaminophen as bad for livers..so have I been fed wrong information all these years? Apparently. I find that all very confusing.
Lynn, I appreciate your concern and will go to the link provided after I send this.

And, bikergirl75, welcome! I'm pretty new here, too and I do know you're symptoms will get better. 
Title: Re: Harvoni Side effects
Post by: Defendo on April 15, 2015, 08:48:39 pm
kaemicha, Lynn and Meg,

I have been doing some of my own research on this issue and it appears that Lynn and Meg are correct.  Like keamicha, I was always told to avoid Acetaminophen, so this is a real eye-opener for me.

With Hep C, Avoid Ibuprofen

The CDC recommends that patients with hepatitis C should not use ibuprofen. Large amounts of the drug may stress the liver and raise your levels of liver enzymes. If you have chronic hepatitis C and choose to use ibuprofen as a pain killer, see your doctor regularly to monitor your health and check your liver function tests.

According to the National Institutes of Health, you shouldn't use ibuprofen if you have any type of liver damage, as you may be at increased risk of gastrointestinal bleeding. You also risk developing gastric ulcers and gastrointestinal pain.

Peace,
Jay
Title: Re: Harvoni Side effects
Post by: Defendo on April 15, 2015, 08:55:23 pm
But than again the VA says:

"Over-the-counter pain relief medications are usually not harmful. Check with your doctor first and take them in moderation. Overuse of acetaminophen (in Tylenol) can cause liver damage. Patients with hepatitis C should limit their acetaminophen (Tylenol) to two grams (four 500mg tablets) per day. Other drugs for pain include aspirin, ibuprofen, Motrin, Advil, Naproxen, and Aleve. They are safe in HCV patients who do not have cirrhosis. But, if a patient has cirrhosis, then ibuprofen, Motrin, Advil, and Naproxen cannot be taken at all. If you are not sure, always check with your doctor.
Hepatitis C Resource Centers
September 22, 2005; Last reviewed/updated: July 30, 2013

Why is there no consensus about this very important issue?
Title: Re: Harvoni Side effects
Post by: audreywald on April 15, 2015, 08:58:01 pm
I heard from a friend who heard from a friend that the relapse rate for people treated for less than 24 weeks is rising. Has anyone heard or experienced anything like this? Also, my friends insurance will only pay for 8 weeks, she is previously untreated but very nervous about going on Harvoni or any other med if she does not have a seriously good chance of a cure. Any info anyone has would be greatly appreciated.
Title: Re: Harvoni Side effects
Post by: kaemicha on April 15, 2015, 09:02:38 pm
But than again the VA says:

"Over-the-counter pain relief medications are usually not harmful. Check with your doctor first and take them in moderation. Overuse of acetaminophen (in Tylenol) can cause liver damage. Patients with hepatitis C should limit their acetaminophen (Tylenol) to two grams (four 500mg tablets) per day. Other drugs for pain include aspirin, ibuprofen, Motrin, Advil, Naproxen, and Aleve. They are safe in HCV patients who do not have cirrhosis. But, if a patient has cirrhosis, then ibuprofen, Motrin, Advil, and Naproxen cannot be taken at all. If you are not sure, always check with your doctor.
Hepatitis C Resource Centers
September 22, 2005; Last reviewed/updated: July 30, 2013

Why is there no consensus about this very important issue?

Whew! Thank you!! I didn't know much of this at all. So uninformed here. I've taken Ibuprofen most every day!
Title: Re: Harvoni Side effects
Post by: kaemicha on April 15, 2015, 09:04:57 pm
kaemicha, Lynn and Meg,

I have been doing some of my own research on this issue and it appears that Lynn and Meg are correct.  Like keamicha, I was always told to avoid Acetaminophen, so this is a real eye-opener for me.

With Hep C, Avoid Ibuprofen

The CDC recommends that patients with hepatitis C should not use ibuprofen. Large amounts of the drug may stress the liver and raise your levels of liver enzymes. If you have chronic hepatitis C and choose to use ibuprofen as a pain killer, see your doctor regularly to monitor your health and check your liver function tests.

According to the National Institutes of Health, you shouldn't use ibuprofen if you have any type of liver damage, as you may be at increased risk of gastrointestinal bleeding. You also risk developing gastric ulcers and gastrointestinal pain.

Peace,
Jay

Thank you all for doing this research. I cannot believe I have not been told any of this. Again, the only thing that was said to me before I started the Harvoni is that I only had 10 years to live! Yes, every year for the past 28+years!

Thank GOD for this forum!
Michelle
Title: Re: Harvoni Side effects
Post by: Defendo on April 15, 2015, 09:23:32 pm
Here is another,

Tylenol (acetaminophen) is toxic to the liver in large doses (such as in suicidal attempts where a patient ingests large amounts, often more than 10 grams of the medication), and also in situations where a patient drinks alcohol heavily while taking high doses of Tylenol. Tylenol with alcohol ingestion can be toxic to the liver with lower doses of Tylenol than without the alcohol.

Otherwise, for the general population, both Tylenol and Motrin (ibuprofen, an NSAIDS) have low(<1%) liver toxicity at the regular, recommended doses. Moreover, both drugs can usually be used, in the recommended doses prescribed by a physician, reasonably safely for the "flu" symptoms caused by interferon used for treating chronic hepatitis C.

With advanced, complicated cirrhosis from hepatitis C, for which interferon is rarely used, all drugs, including these, must be prescribed with great caution, if at all. In addition, in these patients with advanced cirrhosis, NSAIDS, including Motrin, can worsen or even precipitate hepatorenal syndrome (a serious condition with both liver and kidney failure) and possibly induce intestinal bleeding.
Title: Re: Harvoni Side effects
Post by: Katie on April 15, 2015, 09:29:58 pm
Almost everything you ingest, breathe or put on your skin goes through the liver and since ours are compromised we need to pay attention.  Sometimes we can't help it, but I figure a little pain, say for a moderate headache, is better than always using medication.  Be sure to question your GP on any antibiotics prescribed as well.  Some are much easier on the liver than others and they often forget about your liver disease if you are there with some unrelated problem.  Be proactive and if you have a local pharmacists, they are a wonderful resource to advise you, even on some supplements and other medications, both OTC and prescribed.

The aspirin, ibuprofen, Motrin, Advil, Naproxen, and Aleve  are harmful to patients with cirrhosis because they are blood thinners and internal bleeding is dangerous. Since the liver produces the clotting factors you'll notice your doctor will test your blood's clotting ability with liver disease and if your liver is not producing the clotting factors the last thing you need are blood thinners.

Coagulation panel (prothrombin time or PT, and international normalized ratio or INR): These tests measure blood's ability for normal clotting and prevention of bleeding and bruising. This is the function of certain proteins called clotting factors that normally are produced in the liver. Normal values are about 9.5 to 13.8 seconds.

Hope this makes sense and helps.

Welcome to all the new people and Best of luck to everyone!

Katie
Title: Re: Harvoni Side effects
Post by: Katie on April 15, 2015, 09:35:43 pm
Hi Audrey,  I don't know where that friend is getting their information as no one has been post treatment long enough to have that information.  By looking at this forum, the cure rate is very good, even with those taking the 8 week treatment if they meet the criteria.

Katie

Title: Re: Harvoni Side effects
Post by: kaemicha on April 16, 2015, 01:31:57 am
I just found this on CNN.com. And, not to belabor the subject but I thought it ironic that it would be on their front page while we have been talking about it.
____________
http://www.cnn.com/2015/04/15/health/study-acetaminophen-dulls-joy/index.html

(CNN)Feeling so happy you just can't stand it? You might want to pop some acetaminophen.

A new study has found that acetaminophen, the main ingredient in Tylenol, most forms of Midol and more than 600 other medicines, reduces not only pain but pleasure, as well.

The authors of the study, which was published this week in Psychological Science, say that it was already known that acetaminophen blunted psychological pain. But their new research led them to the conclusion that it also blunted joy -- in other words, that it narrowed the range of feelings experienced.

"This means that using Tylenol or similar products might have broader consequences than previously thought," said Geoffrey Durso, a doctoral student in social psychology at Ohio State University and the lead author of the study. "Rather than just being a pain reliever, acetaminophen can be seen as an all-purpose emotion reliever."

Subjects evaluated pleasant, unpleasant photos
How much is too much Tylenol?
How much is too much Tylenol? 02:42
PLAY VIDEO
The researchers tested their thesis by showing 82 college students 40 photographs -- some of highly pleasant images, such as children with kittens, and some of highly unpleasant images, such as children who were malnourished.

Half of the participants in the study were given "an acute dose" of acetaminophen -- 1,000 milligrams -- and the other half were given a placebo with the same appearance. The subjects were then asked to rate the photos according to how unpleasant or pleasant they were.

Those who took the acetaminophen rated all the photos less extremely than those who took the placebo.

"In other words, positive photos were not seen as positively under the influence of acetaminophen and negative photos were not seen as negatively," the authors reported.

Drug did not alter sense of magnitude in general
The researchers followed up by testing a group of 85 people to see whether this change in judgment applied just to emotions or whether the drug blunted people's evaluation of magnitude in general.

This group showed the same blunting of emotional reactions. But acetaminophen did not affect how much blue they saw in each photo.

But people who participated in the study did not appear to know they were acting differently, said Baldwin Way, an assistant professor of psychology who was another of the study's authors.

"Most people probably aren't aware of how their emotions may be impacted when they take acetaminophen," Way said.

Each week, about 23% of American adults -- or 52 million people -- use a medicine containing acetaminophen, according to the nonprofit Consumer Healthcare Products Association.

The authors said it was not known whether other pain relievers, such as ibuprofen and aspirin, have the same effect. But have no fear -- they plan to study that question, as well.

Title: Re: Harvoni Side effects
Post by: Lynn K on April 16, 2015, 03:56:54 am
Yes as I said I am speaking as someone with advanced liver disease so the rules change with cirrhosis especially with portal hypertension enlarged varicies and GAVE (Gastric antral vascular ectasia) http://en.wikipedia.org/wiki/Gastric_antral_vascular_ectasia

For people less than F4 don't take tylenol for people with advanced cirrhosis don't take anything else. But only take Tylenol with care less than 2000 mg a day.

Also when I mentioned Nyquil I was talking about the capsules they have no alcohol http://vicks.com/en-us/browse-products/nyquil/nyquil-dayquil-severe-caplets-co-pack

But they do have 325 mg of acetaminophen (Tylenol) per caplet and a dose is 2 so one dose is 650 mg of Tylenol. The 4 doses allowed in 24 hours  would put you over at 2600 mg so if you did not realize that and took additional Tylenol that would really shoot you over the top and is where some Tylenol overdoses happen.

So the decision after of course discussing with your liver specialist is based on the extent of liver damage what you should take for pain.


Also if you are alcohol free for at least 6 months that will allow you to be eligible for a liver transplant at most if not all transplant centers. But if you are currently or recently abusing alcohol or for that matter any illegal drug yes that is correct you will not be eligible for a transplant.

Do you have any symptoms of cirrhosis Michelle? Have you been told your MELD (Model for End-Stage Liver Disease) score or child Pugh score?

http://en.wikipedia.org/wiki/Model_for_End-Stage_Liver_Disease

http://www.mayoclinic.org/medical-professionals/model-end-stage-liver-disease/meld-model-unos-modification

In medicine (gastroenterology), the Child-Pugh score (sometimes the Child-Turcotte-Pugh score) is used to assess the prognosis of chronic liver disease, mainly cirrhosis. Although it was originally used to predict mortality during surgery, it is now used to determine the prognosis, as well as the required strength of treatment and the necessity of liver transplantation.

http://en.wikipedia.org/wiki/Child-Pugh_score

http://www.hepatitis.va.gov/provider/tools/child-pugh-calculator.asp

Both of those are used to stage the severity of your cirrhosis and how high you would be on the liver transplant list.

I am MELD 8 and Child "A" for reference.

Although the MELD is currently used for liver transplant list placement previously the Child Pugh was used.

Just trying to help here but always confirm with your doctor
Title: Re: Harvoni Side effects
Post by: Defendo on April 16, 2015, 06:25:03 am
Thank you Katie and Lynn!  This information is very helpful.

Jay
Title: Re: Harvoni Side effects
Post by: kaemicha on April 16, 2015, 07:23:34 pm
Yes as I said I am speaking as someone with advanced liver disease so the rules change with cirrhosis especially with portal hypertension enlarged varicies and GAVE (Gastric antral vascular ectasia) http://en.wikipedia.org/wiki/Gastric_antral_vascular_ectasia

For people less than F4 don't take tylenol for people with advanced cirrhosis don't take anything else. But only take Tylenol with care less than 2000 mg a day.

Also when I mentioned Nyquil I was talking about the capsules they have no alcohol http://vicks.com/en-us/browse-products/nyquil/nyquil-dayquil-severe-caplets-co-pack

But they do have 325 mg of acetaminophen (Tylenol) per caplet and a dose is 2 so one dose is 650 mg of Tylenol. The 4 doses allowed in 24 hours  would put you over at 2600 mg so if you did not realize that and took additional Tylenol that would really shoot you over the top and is where some Tylenol overdoses happen.

So the decision after of course discussing with your liver specialist is based on the extent of liver damage what you should take for pain.


Also if you are alcohol free for at least 6 months that will allow you to be eligible for a liver transplant at most if not all transplant centers. But if you are currently or recently abusing alcohol or for that matter any illegal drug yes that is correct you will not be eligible for a transplant.

Do you have any symptoms of cirrhosis Michelle? Have you been told your MELD (Model for End-Stage Liver Disease) score or child Pugh score?

http://en.wikipedia.org/wiki/Model_for_End-Stage_Liver_Disease

http://www.mayoclinic.org/medical-professionals/model-end-stage-liver-disease/meld-model-unos-modification

In medicine (gastroenterology), the Child-Pugh score (sometimes the Child-Turcotte-Pugh score) is used to assess the prognosis of chronic liver disease, mainly cirrhosis. Although it was originally used to predict mortality during surgery, it is now used to determine the prognosis, as well as the required strength of treatment and the necessity of liver transplantation.

http://en.wikipedia.org/wiki/Child-Pugh_score

http://www.hepatitis.va.gov/provider/tools/child-pugh-calculator.asp

Both of those are used to stage the severity of your cirrhosis and how high you would be on the liver transplant list.

I am MELD 8 and Child "A" for reference.

Although the MELD is currently used for liver transplant list placement previously the Child Pugh was used.

Just trying to help here but always confirm with your doctor

Lynn,
I really appreciate all of your input and knowledge. I've thought about the fact that I know almost nothing about my liver except that after my biopsy, 28 years ago, I was told I had cirrhosis and no one has ever disputed it.
The knowledge from the medical community, did not inform me of much more. No ensuing doctor ever really followed up on it, consequently, I know virtually nothing.
I found out I had hep c after being stuck with a acupuncture needle, while on the job. Before that I didn't have a clue I had hep c.
I will check the links but I just don't really want to know too much but I will have a lot of questions for the doctor, next week.
Bottom line for me, my liver condition has never been addressed other to say that I have a liver condition.

And..thanks for the info on Nyquil. I didn't know that and I would take them.
Title: Re: Harvoni Side effects
Post by: Lynn K on April 16, 2015, 08:49:05 pm
Sure good luck at your doctor visit I am sure you will learn a lot

:)
Title: Re: Harvoni Side effects
Post by: kaemicha on April 16, 2015, 08:52:23 pm
I'm sure you all will be the first to know what he says!
 :)
Title: Re: Harvoni Side effects
Post by: Davidlm1 on April 16, 2015, 10:42:39 pm
Well, first labs back after 4 weeks and still looking at a VL of 3.2 mill. Was expecting a hard road to go. Was certainly hoping to get a none detected result back but still have 7 weeks of treatment left so not going to be too discouraged now. Will be doing my 6 week labs next week and seeing my doctor the following Monday. Seems the fatigue and fogginess have lessened which is a relief.  Would like to hear more about how the 1B genotype folks have been doing with results. Seems most of the writers have been 1A. Wishing best of luck to all. David
Title: Re: Harvoni Side effects
Post by: Katie on April 16, 2015, 11:03:20 pm
Hi David!  Hang in there.  If you go to the search bar on the left ,under the STATS tab and type in 1b, it will bring up all of the posts commenting on it.  Looks as if quite a few people are 1b.  Their info may be helpful to you.

Hope everything goes good for you and it seems 1b's respond very well with Harvoni.

Keep the faith and be good to yourself!

Katie
Title: Re: Harvoni Side effects
Post by: MEG on April 17, 2015, 12:48:49 am
Defendo and Katie and Lynn...thanks so much for digging up all this information on the Tylenol/NSAIDS issue.

It's great to have it here for others' future reference. It's pretty confusing. Involves going deep into the study of liver function, then its disease, and then the drugs mechanism of action...and lastly putting all that information together...that's why medical professionals go to school!

Michelle, I'm so sorry you haven't gotten the medical attention you've deserved. Hopefullly, that has all changed now...

Best luck to everyone! I'm officially impatient for this therapy to be done.

4 more days.

Last dose, on Monday, April 20!
Title: Re: Harvoni Side effects
Post by: Katie on April 17, 2015, 01:07:36 am
Good for you Meg.....I have my blood work on the 20th and will get results the 27th.  I am certainly hoping for results like Dragonslayer so I can have a good summer.  I've been feeling really good, but get very tired late afternoon.  Low energy, so we'll see what's going on.  I feel as if I am cured, so I hope that is confirmed.  If not....so be it and I know Harvoni did wonders for me.  I still feel better than I have in YEARS!  I get tired, but I no longer have that horrible weakness from fatigue.  And I know we are all heading in the right direction and so is the research.

I'll be thinking of you and everyone on this journey and wish you all the strength to fight and beat this monster.  We are true warriors and we have each other.

Katie
Title: Re: Harvoni Side effects
Post by: MEG on April 17, 2015, 01:31:25 am
Oh Katie---your SVR check and my last dose...sistah!

I'm holding you in my heart for a cure....with all that our bodies have gone through, the winter transitioning into Spring, it's really hard to tease out our fatigue, our moods...

Visualizing a lab report that says: NOT DETECTED for you.
Hugs, Katie. You're such a pleasure. I hope you're enjoying your garden coming alive...Meg.
Title: Re: Harvoni Side effects
Post by: kaemicha on April 17, 2015, 01:34:06 am
Meg,

Thank you and congratulation on almost being done with your treatment.

Be well - stay well.

Michelle
Title: Re: Harvoni Side effects
Post by: Lynn K on April 17, 2015, 02:55:43 am
Hi Meg

Right behind you 150 Harvoni down 18 to go!

Finish line is in sight starting my end of a long run push and kick it to the tape!
Title: Re: Harvoni Side effects
Post by: Valsblessing on April 17, 2015, 04:20:29 am
I am so happy for all the folks on the "home stretch"! I went for my 4 week blood draw toy and all they did was a CBC? I was so bummed! Totally thought it would be for ALT, AST and/or VL....I asked the technician what they were looking at and she said anemia? I expressed my disappointment at not seeing if I had cleared the virus and she said some people quit the minute the found out they were clear. Wow! I would take it as long as possible, mine is 12 weeks, just to know it's gone. Plus, I have an excellent Hepatologist and trust his advice. On the bright side, from what I could tell, all my labs were within the ranges stated...I cannot wait until I am also on the tail end, and again, So Happy for you who are....your posts have been a Godsend for me....Thank You.....hope you go gor th and be Blessed.....:)
Title: Re: Harvoni Side effects
Post by: mario555 on April 17, 2015, 07:42:06 am
LOOKING FOR 24 WEEKS PATIENTS... Hi everyone. I want to hear from people doing Harvoni without Riba that are at the tail end of their treatment. I want to compare notes! I have 13 days left out of 168 pills. I started having "pinching" pains in my liver area and was wondering if I am starting to "burn" the remainder of my liver! I have been pain free since week 3 or 4 and the pain returned at week 21 or so. Anyone in the 24 weeks regimen feeling pain?
Title: Re: Harvoni Side effects
Post by: Davidlm1 on April 17, 2015, 08:16:25 am
Thanks Kate. Going to check it out on stats for 1B folks. My doc says it is the most difficult one to get rid of but has seen excellent cure rate results with Harvoni so I am staying encouraged. Have had this disease since the 70's so giving more than 4 weeks to get rid of it seems reasonable. Keeping the faith on it and wishing the best to everyone who takes the time to share, question or even debate on this site. Glad to have it available. David
Title: Re: Harvoni Side effects
Post by: MEG on April 17, 2015, 04:04:21 pm
Hi David....

According to Gilead's published Harvoni studies in the New England Journal of Medicine,  Geno 1a and those with the IL28B nonCC mutation are, historically, since interferon days and now with DAA's like Harvoni, the more difficult to SVR...

I'm 1a with the nonCC mutation...But here on this blog, 1a folk, so far are achieving SVR. I've seen one geno 1b report here and she has achieved SVR....

Here is a link to one of the phase 3 Ion studies....Page 8 breaks down the results by genotype and other characteristics...

http://www.nejm.org/doi/suppl/10.1056/NEJMoa1402355/suppl_file/nejmoa1402355_appendix.pdf

If you google "new england journal of medicine, sofosbuvir+ledipasvir, you can find them all. From the initial Phase 1 through phase 3.

Best luck. Your chances have never been better for a cure!
Title: Re: Harvoni Side effects
Post by: MEG on April 17, 2015, 04:10:52 pm
@Val

Welcome Val...I'm surprised that your hep didn't ask for a viral load or LFT's--- it seems there's variance among our physicians re: how often to draw which labs...some go a bit overboard(mine) and others don't want to know until 12 weeks post treatment...

How interesting their rationale for not testing.....

Good luck! Truth is that even if you're positive at 4 weeks*many still are, unless you have extenuating circumstances(cirrhosis, prior treatment failure) you would be kept on therapy. It's not like in the interferon days of response guided treatment and duration...Meg
Title: Re: Harvoni Side effects
Post by: Valsblessing on April 17, 2015, 04:40:14 pm
Thanks so much for your response Meg. My VL was 489 thousandish.....in Jan of this year and never had prior treatment. I have, however supposedly had this since transfusions at birth on an AFB back east....was told I had a "weak liver, and or undeveloped liver" at age twelve. Could not metabolize medications...IE: slept two days from car sickness meds, seizure from appendectomy IV....just weird reactions since as far back as I can remember! Probably the main reason I was not a good candidate for Interferon. I am sooooooo grateful that this HARVONI is running so smoothly....low key headache and sleepy....no big deal. I Appreciate your feedback...:)
Title: Re: Harvoni Side effects
Post by: MEG on April 17, 2015, 04:54:32 pm
Ah Val....you have a very, very excellent chance at a cure.....

I'm so sorry that you received it thru a blood transfusion since birth. It's amazing that you've done as well as you have.

What are your liver function tests like pre treatment.?

I hope it stays smooth for you. I think that you're one of those people who will notice dramatic effects(positive) of your liver function and overall health since your poor liver has been compromised all your life...I wouldn't be surprised to hear from you, after treatment, of this constellation of symptoms, pains, that you thought were just part of being alive, resolving themselves.  Let this be true....

Meg.
Title: Re: Harvoni Side effects
Post by: MEG on April 17, 2015, 05:05:21 pm
@Lynn.

<i>Finish line is in sight starting my end of a long run push and kick it to the tape!</i>

That's my girl! What a great visual. Putting that one in my front pocket for the next few days....;-)
Title: Re: Harvoni Side effects
Post by: dragonslayer on April 17, 2015, 05:11:35 pm
Hi David....

According to Gilead's published Harvoni studies in the New England Journal of Medicine,  Geno 1a and those with the IL28B nonCC mutation are, historically, since interferon days and now with DAA's like Harvoni, the more difficult to SVR...

I'm 1a with the nonCC mutation...But here on this blog, 1a folk, so far are achieving SVR. I've seen one geno 1b report here and she has achieved SVR....

Here is a link to one of the phase 3 Ion studies....Page 8 breaks down the results by genotype and other characteristics...

http://www.nejm.org/doi/suppl/10.1056/NEJMoa1402355/suppl_file/nejmoa1402355_appendix.pdf

If you google "new england journal of medicine, sofosbuvir+ledipasvir, you can find them all. From the initial Phase 1 through phase 3.

Best luck. Your chances have never been better for a cure!

Thanks for the link, Meg. Like you, I'm 1a with  the IL28B status of TT, the worst for interferon cures. Apparently, they dont test for that much when administering Harvoni because the difference in response and relapse rates between those with and without the mutation is statistically insignificant, which was not the case with the earlier treatments.
Title: Re: Harvoni Side effects
Post by: Valsblessing on April 17, 2015, 05:26:07 pm
Hi again Meg...ALT was 101, AST 89 in January. I am so happy to hear your words of encouragement as I have felt as tho I have "pushed" myself thru life! Not all the time, but, a lot of the time....I thought it was psychological....I have no idea what life is without this....I am 61 years young....and the women in my family have incredible longevity, actually have three Aunts who lived past 100! Thanks again....you made my day! :) I wish you Blessings.
Title: Re: Harvoni Side effects
Post by: Kate101 on April 17, 2015, 07:26:01 pm
Day 9 and everything is tolerable except for the anxiety/blood pressure/crazy heartbeat. Can't get Doctors appointment till the 24th.
All day I have felt high as a kite…like I smoked something funny or took to many strong pain meds…Would normally have enjoyed but kinda scary!
I am so lucky and thankful to even get this drug I hate to fuss. I do wish that Gilead would have published all/most of what appears to be common side effects.  It would be better to let folks know what might happen instead of thinking you are alone. If I had not found this site I would be camped at the ER. If I tell my family they will think I am complaining because all the disclosures say Havroni is no big deal.BS
Has anyone written to the FDA so they will update their findings?

Kate101
Title: Re: Harvoni Side effects
Post by: Defendo on April 17, 2015, 08:11:53 pm
Hello Kate,

I am on day 17.  My blood pressure has increased too.  I know that moderate exercise will help, but I just do not have the energy yet.  I am hoping I will become more energized as treatment progress.

I think we all should remember that while the side effects of this drug are much less severe than previous treatment options, it is still a very new and powerful drug. The truth be told, even Gilead does not know all the side effects because their data is based on a very limited population of HCV positive patients.

Of course, for marketing purposes Gilead is going to downplay any sides.  Do not worry about your family, they simply do not understand.  HCV and tx do not appear obvious to people so they assume if you are walking and talking, you are ok.

I found found the how I feel varies from day to day. But there always seems to be some issue each day I have to deal with. Sometimes headaches, sometimes nausea, sometimes joint pain.  I have had period of blurred vision too. Sometimes my mind just can not concentrate.   

Also different people respond differently to the effects of Harvoni. But as long as you can manage the sides, it is worth the temporary suffering.

The only way the FDA will update any information on Harvoni will have to be from results of clinical studies. I do not think they will update any information solely on patient reports.

At this point I am only concerned with what my first test on my viral load will show.  I am hoping for undetectable at the end of the first 4 weeks.  If that happens, I will endure any suffering and pain that may come my way!

Peace,
Jay
Title: Re: Harvoni Side effects
Post by: Kate101 on April 17, 2015, 08:37:33 pm
Right on Jay!

I get to test at 2 and 4 weeks. Not sure why but I cant wait! This is my 2nd go around as well.  So I too have a true appreciation so far ;) I would have walked on hot coals for this stuff. I just needed to event I guess.

Thanks,

Kate

Title: Re: Harvoni Side effects
Post by: MEG on April 18, 2015, 12:11:54 am
Katie, Paul, Lynn and all....wanted to make sure you know about this new thread.  Tpropane posted an excellent read about viral loads on DAA therapy that talks about how people who are still somewhat detectable go on to SVR....not like the Interferon days...

http://forums.hepmag.com/index.php?topic=2597.0
Title: Re: Harvoni Side effects
Post by: Lynn K on April 18, 2015, 01:45:28 am
Hi Meg

Thanks I saw that great info! I was UND at weeks 4 and 12 haven't been tested since for viral load and wont be again until EOT in SEVENTEEN MORE DAYS!!!

oops was I shouting lol

I was also UND at weeks 4 and EOT 12 weeks of Solvaldi and Olysio so I will have my fingers, eyes and toes crossed waiting for my 12 weeks post treatment results.
Title: Re: Harvoni Side effects
Post by: MEG on April 18, 2015, 01:58:32 am
@Lynn...What shouting? I heard well-earned excitement...LOL!

How long post EOT on S/O did you become detectable?
Title: Re: Harvoni Side effects
Post by: Lynn K on April 18, 2015, 02:27:56 am
I was only tested at 12 weeks post.

My before treatment viral load was 2 million my 12 week post in Sept 2014  was 2.4 million.

In November the FDA added the recommendation that GT 1a with cirrhosis should treat with Sov/Oly for 24 weeks instead of the 12 weeks I treated for.

Oh well.....
Title: Re: Harvoni Side effects
Post by: Defendo on April 18, 2015, 08:00:20 am
I wanted to update everyone on my experiences this last week.

As I indicated in my first post to this forum, I began to develop symptoms in my left knee that were similar to Gout on day 7 of TX.  I had three past episodes of Gout over the last 8 years, always in my left toe. So I have experienced these kinds of symptoms. In past episodes, I had big time swelling in the toe joint.

Even though I have gout medicine, I do not know how it would react with the Harvoni, so I did not use it.  Instead I took a holistic approach and drink sour cherry juice, took some glucosamine, and an NSAID at bedtime.   By last Wednesday, the symptoms had cleared up.

Here is the strange part!  Wednesday night I began to feel pain or cramping in my  right calf.  Yesterday I just thought it was cramps from not drinking enough water.

But this morning my entire lower right leg is painful and I can hardly walk on it. I noticed this morning that the pain is in my calf, but my right foot is swollen.

Although similar, this is different that the episodes I had before.  I am convinced it is being caused by Harvoni. It may not be gout, but it is some form of arthritis that I did not have before Harvoni. 

I have left a message with my nurse, but it is the weekend and I do not consider this an emergency yet.  What sucks is that my son and I are going to a "Cat Circus" this afternoon and I do not know if I can make it. Climbing and descending stairs is very painful and difficult.  Unfortunately, I live in a townhouse and I have stairs.

Has anyone else had this kind of experiences?  Today is only my 18th day, so I hope this is something that will pass and not something I will have to deal with throughout the 22 weeks.

Peace,
Jay
Title: Re: Harvoni Side effects
Post by: atomic dog on April 18, 2015, 12:42:04 pm
Hi again Meg...ALT was 101, AST 89 in January. I am so happy to hear your words of encouragement as I have felt as tho I have "pushed" myself thru life! Not all the time, but, a lot of the time....I thought it was psychological....I have no idea what life is without this....I am 61 years young....and the women in my family have incredible longevity, actually have three Aunts who lived past 100! Thanks again....you made my day! :) I wish you Blessings.

I hear you on that pushing yourself through life. Hep C is like a huge stone around your neck. Let's pray this is the dawn of a new day.
Title: Re: Harvoni Side effects
Post by: atomic dog on April 18, 2015, 12:47:34 pm
OK, so not much discussion about actual side effects on this Side Effects thread, so I thought I'd get back on track: I have numbness in one of my little toes, and considerable itching (more like pins and needles). I've heard that the numbness is a bad thing (toxicity?). I'm going to resume taking alpha lipoid acid (that's been OK'd by my clinical pharmacist who runs the Harvoni program). Not sure if anyone else has experienced these symptoms, but I would recommend you try the ALA; it's used widely in Europe to relive symptoms of neuropathy in chemo patients and I've used to alleviate nerve pain caused by diabetes.
Title: Re: Harvoni Side effects
Post by: Katie on April 18, 2015, 02:05:29 pm
Hi Jay,  I have no idea if this is what you are experiencing but a dear friend of mine had a history of gout in his feet.  One day his knee was swollen and red and similar to gout.  It then went into his calf with severe cramping and eventual the muscle felt "hard" and he had difficulty putting weight on it.  It turned out the bursae sack in the knee ruptured and the fluid went into his calf.  When he finally went to the doctor he was told a concern of that was the possibility of blood clots forming.  He was not on any medication and was not going through any treatment.  I would suggest you see your doctor as this may be similar to what you are experiencing.  Is it caused from Harvoni?  Could be since any new medication might trigger a condition you already have but wouldn't really be considered a side effect.

Anything like this is really painful and hope it feels better soon.  You should probably stay off of it and keep it elevated and maybe try alternating ice and heat packs to see if that helps along with massaging to keep it loose.

Good luck!

Katie
Title: Re: Harvoni Side effects
Post by: Debula on April 18, 2015, 03:53:06 pm
Hi all
I started Harvoni 2 days ago.  The only thing that I feel and is annoying me is pain and a bloating feeling in my liver it radiates all the way back to my kidney.  I think others have experienced this too.  I can live with it but it is uncomfortable and annoying mostly.   I hope this goes away. 
And so far that is it. :)
Title: Re: Harvoni Side effects
Post by: atomic dog on April 18, 2015, 05:20:27 pm
Debula, Congrats on starting this potentially life-saving journey. One theme you hear over and again on this site, and it is so in my own experience as well, is that side effects come and go, they wax and wane and sometimes wax again. I've had a rough patches (I'm at the end of Week 9) but for the most of the time things have gone well. Like everyone says, drink lots of water, eat healthy, rest, and do some fun, life-affirming things (spend extra time with friends and family, listen or play your favorite music, whatever brings you joy. In the end, that's what this is all about.
Title: Re: Harvoni Side effects
Post by: Mugwump on April 18, 2015, 05:35:13 pm
Hi all
I started Harvoni 2 days ago.  The only thing that I feel and is annoying me is pain and a bloating feeling in my liver it radiates all the way back to my kidney.  I think others have experienced this too.  I can live with it but it is uncomfortable and annoying mostly.   I hope this goes away. 
And so far that is it. :)
I have almost the same level of liver damage. I am happy to tell you that at about 12 weeks tx with harvoni the pains in the liver and kidney region will reduce. In the past month I have suffered from the flu and a nasty cold that both my wife and I got, now the hay fever season is upon us and the trees are starting to spread their nice yellow dust all over the place so sleep has been a problem for me. As you know avoid all meds that are strong nsaids. So I am just suffering through it for the sake of what is left of my liver!

The pain is most likely being caused by the excess of bilirubin created as dead liver cells are exchanged by the liver. Some people do not experience as much discomfort from the problem but I suspect this if only people with less liver damage than F4.

In the first few weeks expect to pass much more fluids, in fact for the first month and a half I was up taking a leak every 2 hours like clock work... but my 4 week vl test came back as <15 and my blood work has all showed that my liver is functioning normally again. Don't be surprised if you experience tinnitus and a jump in blood pressure. BUT again my bp has come down to where it was at pre treatment in the past two months, I am on the last month of treatment and see my GI on Monday. He will write me a req for the vl test follow ups. 

Keep your stick on the ice, you will beat the disease!

Greetings
Eric
Title: Re: Harvoni Side effects
Post by: BubbaT on April 18, 2015, 06:26:29 pm
Also, I would add that in the first weeks it's very important to eat as lite as you can, don't try to eat a heavy meal, avoid animal protein if you are F4 just for the first 2 weeks,  I found that the lemon water I'm using is working well for me....
I'm juicing a whole lemon in 16 ozs of water and adding I packet of real stevia,
I stopped coffee, and I'm drinking this around the clock and my hydration is maintained so I'm not getting headaches.. And the joint and  leg pains I was having are gone...

I visited to GI yesterday, all labs good, he took a picture of some blisters that developed on my hands and fingers at week 5-6 , my hands and fingers had swollen-and developed small plasma filled blisters, this lasted for 7-10 days and when I would rub my hands together if felt like intense burning in my hands, really strange..

 

I'm at week 7  Tuesday and everything has improved for me, the pain in the abdomen has diminished, no real symptoms other than gastric noises in abdomen, and I have been getting about 10hr sleep a day, which is great,

I was 226 at start of Harvoni, now I'm at 212, so I'm stoked about that...Yay!
Title: Re: Harvoni Side effects
Post by: SunIsOut on April 18, 2015, 08:59:04 pm
Hello everyone,

My energy is doing very well and I have worked in my yard everyday this week and today was painting the Gazebo from 11:00am till 8:00pm.  I am not taking any pain medication and rarely use them.  The only stuff I am dealing with is tinnitus and blurry vision.

I continue to eat lots fruits, yogurts, nuts, all meats and fish, mostly water to drink 98% anyway, granola bars and ice cream. :)

I start my 3rd bottle on Tuesday and have my next labs on May 1st!  :)

I hope everyone gets better and I am doing well.
Title: Re: Harvoni Side effects
Post by: MEG on April 18, 2015, 09:04:32 pm
@SunIsOut

You sound like you're doing wonderfully. So happy to hear this...I have friends who live in Bethesda and they have been ecstatic this week with the cherries peaking and everything else coming alive.....They've been sending pix and they are glorious. 

PS: my last pill is tomorrow! 12 weeks went by much quicker than I anticipated. Whew.
Title: Re: Harvoni Side effects
Post by: Debula on April 18, 2015, 10:15:03 pm
Thank you all for your comments:)

Eric, I am happy to hear that this will go away. YAY.  I am really glad to hear that your liver is functioning well again.  That in itself is a miracle.  Are you on 24 weeks too?

Atomic dog, It is weird how sides come and go.  It is an experience in itself ;)

Bubba, I am doing my best to eat better.  Have been eating a lot of salads and veggies.
I think I need to eat less but more frequently.  I seem to feel hungry more too.
Meg, congratulations on being on your last pill!  I hope my 24 weeks go by fast

SunisOut I sounds like you feel great. That is awesome!

I wish you all well.

I am so glad I have this forum and the wonderful people who contribute
Title: Re: Harvoni Side effects
Post by: crazycanuck on April 18, 2015, 11:21:12 pm
I wanted to update everyone on my experiences this last week.

As I indicated in my first post to this forum, I began to develop symptoms in my left knee that were similar to Gout on day 7 of TX.  I had three past episodes of Gout over the last 8 years, always in my left toe. So I have experienced these kinds of symptoms. In past episodes, I had big time swelling in the toe joint.

Even though I have gout medicine, I do not know how it would react with the Harvoni, so I did not use it.  Instead I took a holistic approach and drink sour cherry juice, took some glucosamine, and an NSAID at bedtime.   By last Wednesday, the symptoms had cleared up.

Here is the strange part!  Wednesday night I began to feel pain or cramping in my  right calf.  Yesterday I just thought it was cramps from not drinking enough water.

But this morning my entire lower right leg is painful and I can hardly walk on it. I noticed this morning that the pain is in my calf, but my right foot is swollen.

Although similar, this is different that the episodes I had before.  I am convinced it is being caused by Harvoni. It may not be gout, but it is some form of arthritis that I did not have before Harvoni. 

I have left a message with my nurse, but it is the weekend and I do not consider this an emergency yet.  What sucks is that my son and I are going to a "Cat Circus" this afternoon and I do not know if I can make it. Climbing and descending stairs is very painful and difficult.  Unfortunately, I live in a townhouse and I have stairs.

Has anyone else had this kind of experiences?  Today is only my 18th day, so I hope this is something that will pass and not something I will have to deal with throughout the 22 weeks.

Peace,
Jay
Hey Jay that has been one of my complaints venting in this forum and to my liver Dr. is the calf pain and swelling.  There is not much I have done but when i spoke to someone here they gave me the advice to drink lemon water all day and change to a raw veggie and fruit diet with lean protein.  It was happening everyday and night but now its just a few times a week.  I feel it is another side effect of the Harvoni.  So far my side effects almost made me say screw it and quit but people here encouraged me to keep trying day by day.  One other thing my glands in my neck swell and my face so keep an eye out for that as well.  I hope it helps.
Title: Re: Harvoni Side effects
Post by: Philadelphia on April 18, 2015, 11:23:26 pm
Denial, I found myself eating a lot when I wasn't smooshed with side effects. I ate little but often (1st breakfast, 2nd breakfast, early lunch, late lunch, dinner, supper then something before I went to bed). I didn't need much though, I just kept grazing.
Title: Re: Harvoni Side effects
Post by: crazycanuck on April 18, 2015, 11:26:56 pm
Mel I am so very happy for you that tomorrow is your last pill!!!!!! :D What a wonderful feeling knowing it's over.  Thank you for helping me this last week not quit on myself.  I wish you alllll the best!!!
Title: Re: Harvoni Side effects
Post by: UwasvWahya on April 18, 2015, 11:34:32 pm
Hello Everyone ~

I have been reading posts here for several hours now and it seems to me that I've found exactly the forum that I need to join, so here I am.
I was kind of blindsided when diagnosed with Hep C in October of 2011. Long story short, I had a drug abuse issue (relapsed after 13yrs. clean) that led to some legal problems which consequently landed me in prison. While being processed into the NY State prison system you undergo a complete medical screening. It was during this process that I discovered that I was Hep C positive.
Thankfully and gratefully, I am clean & sober again now since November of 2011.
Since my release earlier this year I have been seeing a gastroenterologist.
After going over my medical history, drug abuse history and diagnostic test results, he is convinced that I became infected sometime back in the early 1980's much to my surprise.
He just prescribed me 12 weeks of treatment with Harvoni which my insurance thankfully covered after additional testing.
Well, I picked up the prescription Friday afternoon and took my very first tablet at 6pm. At about 10pm, out of nowhere, I awoke from a sound sleep and proceeded to the bathroom where I discovered that I had a very severe case of diarrhea.
As if this wasn't bad enough in and of itself, approximately 5 minutes after entering the bathroom I began to violently vomit also. The diarrhea continued to attack all night long. Not to be gross, but I literally went through easily a dozen pair of boxers. I felt as though I had a bad case of the flu over the next 2 days and I have not taken another Harvoni tablet since and do not want to until I have a chance to talk to my gastroenterologist first thing Monday morning.
Of course, the curiosity is driving me crazy. Has anyone else had this kind of an experience with Harvoni? If so, is this something that goes away after a few days or does this type of side-effect continue?
Title: Re: Harvoni Side effects
Post by: crazycanuck on April 18, 2015, 11:55:22 pm
Hello Everyone ~

I have been reading posts here for several hours now and it seems to me that I've found exactly the forum that I need to join, so here I am.
I was kind of blindsided when diagnosed with Hep C in October of 2011. Long story short, I had a drug abuse issue (relapsed after 13yrs. clean) that led to some legal problems which consequently landed me in prison. While being processed into the NY State prison system you undergo a complete medical screening. It was during this process that I discovered that I was Hep C positive.
Thankfully and gratefully, I am clean & sober again now since November of 2011.
Since my release earlier this year I have been seeing a gastroenterologist.
After going over my medical history, drug abuse history and diagnostic test results, he is convinced that I became infected sometime back in the early 1980's much to my surprise.
He just prescribed me 12 weeks of treatment with Harvoni which my insurance thankfully covered after additional testing.
Well, I picked up the prescription Friday afternoon and took my very first tablet at 6pm. At about 10pm, out of nowhere, I awoke from a sound sleep and proceeded to the bathroom where I discovered that I had a very severe case of diarrhea.
As if this wasn't bad enough in and of itself, approximately 5 minutes after entering the bathroom I began to violently vomit also. The diarrhea continued to attack all night long. Not to be gross, but I literally went through easily a dozen pair of boxers. I felt as though I had a bad case of the flu over the next 2 days and I have not taken another Harvoni tablet since and do not want to until I have a chance to talk to my gastroenterologist first thing Monday morning.
Of course, the curiosity is driving me crazy. Has anyone else had this kind of an experience with Harvoni? If so, is this something that goes away after a few days or does this type of side-effect continue?
Glad you made it to this forum UwasvWaya.  What you experienced is what I experienced.  Along with the diarrhea and vomiting was extreme stomach pain, joint pain, anxiety just overall feeling drained. But thanks to someone here he taught me to drink lemon water all day and stick to a raw veggie and fruit diet and keep thinks simple.  I hope this journey is not too hard on you and I wish you the best!
Title: Re: Harvoni Side effects
Post by: UwasvWahya on April 19, 2015, 12:28:02 am
Glad you made it to this forum UwasvWahya.  What you experienced is what I experienced.  Along with the diarrhea and vomiting was extreme stomach pain, joint pain, anxiety just overall feeling drained. But thanks to someone here he taught me to drink lemon water all day and stick to a raw veggie and fruit diet and keep thinks simple.  I hope this journey is not too hard on you and I wish you the best!

Thank you very much for your speedy and informative response to my post CrazyCanuck. This is exactly what I had hoped for, that some fellow Harvoni patients would offer up some helpful advice that had helped them overcome these devastating SE's. I am very appreciative  for your sharing with me what helped you to be able to successfully continue the Harvoni treatment. I also wish you all the best in your journey. God bless you and thank you once again.

Sincerely,
~ Rich  -aka-  UwasvWahya
Title: Re: Harvoni Side effects
Post by: Mugwump on April 19, 2015, 03:37:57 am
Thank you all for your comments:)

Eric, I am happy to hear that this will go away. YAY.  I am really glad to hear that your liver is functioning well again.  That in itself is a miracle.  Are you on 24 weeks too?

 
Yes. Stage 4 liver damage calls for 24 weeks tx. If Harvoni was around only 2 years ago I most likely would have got by with 12 weeks tx. But that is how the cookie crumbles, the way my liver was deteriorating I might have been taken out by a bought of the flu or even a bad cold. I had to give up working last year because of the disease and now I feel confident and am slowly getting back at the grind.

I have noticed more pronounced myalgia in my major muscles in the last month which has started to effect me to some extent but I am hoping that this too goes away post treatment in a short time. The great part is that for the first time in two years my back is not hurting from muscle weakness as my strength is good because my liver is obviously doing the job of supplying adequate energy to my system.

Thank you very much for your speedy and informative response to my post CrazyCanuck. This is exactly what I had hoped for, that some fellow Harvoni patients would offer up some helpful advice that had helped them overcome these devastating SE's. I am very appreciative  for your sharing with me what helped you to be able to successfully continue the Harvoni treatment. I also wish you all the best in your journey. God bless you and thank you once again.

Sincerely,
~ Rich  -aka-  UwasvWahya

We have not heard of people vomiting after taking harvoni. The instruction sheet indicates that the med is metabolized within 4 hours. So I would talk to your specialist about what to do if you should experience this again.

Drink lots of water and try to avoid anything that will upset your stomach is all I can suggest as there is no doubt that harvoni very quickly speeds up the way your renal system works!

Antacids are a no no within 4 hours of taking Harvoni so the best way to balance your system is to increase your water intake. I have been taking the pill on an empty stomach and at first did notice that there was some nausea associated with the drug after about 2 hours but and I stress this, if I drank some water it quickly passed.

It is documented that the lidiposvir component in Harvoni is best metabolized in a more acidic environment, so my reasoning has been to avoid foods that will absorb stomach acid until the Harvoni is metabolized and instead use water after taking the pill to ease the acidity of an empty stomach then eat about 2 to 4 hours after taking the drug.

Hope you get over the nausea and reach SVR.
We all deserve a chance to finally see the end of this nightmare disease!

God Bless All
Eric
Title: Re: Harvoni Side effects
Post by: BubbaT on April 19, 2015, 11:25:24 am
Thank you very much for your speedy and informative response to my post CrazyCanuck. This is exactly what I had hoped for, that some fellow Harvoni patients would offer up some helpful advice that had helped them overcome these devastating SE's. I am very appreciative  for your sharing with me what helped you to be able to successfully continue the Harvoni treatment. I also wish you all the best in your journey. God bless you and thank you once again.

Sincerely,
~ Rich  -aka-  UwasvWahya

@ uswaya, @ Canuck ,

Hello guys,

The first week was the hardest for me, I had diaherra , fever, chills,  and vomited in the first week..
Lightheaded, dizzy right before vomiting...  I had 2 episodes of the fever chills lasted 1 nite...

The 2 week , chronic loose stools, headaches..

Week 3, I stopped drinking coffee and started using juiced lemons in water around the clock, and eating only fruit for brkfst, and salada, no animal protein or very little,   As I continued this I began to feel less side effects and feel less pain In abdomen , and better overall..

Week 4 - developed swollen hands and fingers, and small blisters covered my fingers and hands...

Week 5-6.  Less side effects, better overall, feeling well..

Start week 7 tues.

I have a theory that if you started treatment with a high VL and you are F4 you will experience more severe side effects,
But, as I stated its a theory... So ask your Dr.

Glad to hear your doing better Canuck and uswaya...
You also debula...
Congratulations to Meg..

Title: Re: Harvoni Side effects
Post by: crazycanuck on April 19, 2015, 12:46:13 pm
Thank you very much for your speedy and informative response to my post CrazyCanuck. This is exactly what I had hoped for, that some fellow Harvoni patients would offer up some helpful advice that had helped them overcome these devastating SE's. I am very appreciative  for your sharing with me what helped you to be able to successfully continue the Harvoni treatment. I also wish you all the best in your journey. God bless you and thank you once again.

Sincerely,
~ Rich  -aka-  UwasvWahya
Rich your so welcome! Also I rub peppermint oil on my calves and take tylenol extra strength for the aches and joint pain.  When I was feeling overwhelmed by it all I spoke to my Dr. and he prescribed me something to take for when those times come.  This route may help you too with tough emotional and physical side effects.  YOU are not alone and I found comfort and help here of all places.
Title: Re: Harvoni Side effects
Post by: UwasvWahya on April 19, 2015, 06:36:58 pm
@ Uwasv, @ Canuck ,

Hello guys,

The first week was the hardest for me, I had diarrhea , fever, chills,  and vomited in the first week..
Lightheaded, dizzy right before vomiting...  I had 2 episodes of the fever chills lasted 1 nite...

The 2 week , chronic loose stools, headaches..

Week 3, I stopped drinking coffee and started using juiced lemons in water around the clock, and eating only fruit for brkfst, and salada, no animal protein or very little,   As I continued this I began to feel less side effects and feel less pain In abdomen , and better overall..

Week 4 - developed swollen hands and fingers, and small blisters covered my fingers and hands...

Week 5-6.  Less side effects, better overall, feeling well..

Start week 7 tues.

I have a theory that if you started treatment with a high VL and you are F4 you will experience more severe side effects,
But, as I stated its a theory... So ask your Dr.

Glad to hear your doing better Canuck and Uwasv...
You also debula...
Congratulations to Meg..

Rich your so welcome! Also I rub peppermint oil on my calves and take tylenol extra strength for the aches and joint pain.  When I was feeling overwhelmed by it all I spoke to my Dr. and he prescribed me something to take for when those times come.  This route may help you too with tough emotional and physical side effects.  YOU are not alone and I found comfort and help here of all places.

@BubbaT  -and-  @CrazyCanuck


Good afternoon guys,

And thank you for your responses. I so appreciate this forum and having the support of others going through this treatment.
I will be speaking with my Gastroenterologist tomorrow and I'm hoping maybe he can prescribe a medication to be taken concomitantly with the Harvoni to lessen some of these SE's. I have been reading non-stop and several sites say there are a few available. I'm wondering if anyone here has had any good experiences with any of these meds?
I'm paying very close attention to your responses and I'm certainly going to have to make some serious dietary changes as it's very clear to me now that most of what I experienced was due to what I had eaten shortly before taking that initial dose. I'd had 2 cheeseburgers and a big bowl of peanut butter cup ice-cream....definitely not a good move and I won't make that mistake again.
So, I'm going to have to give up my coffee and I've drank coffee non-stop all day every day my entire adult life so that'll be a major change for me.
I'm also going to have to have to stop drinking milk which is another thing that I have drank by the gallon daily for years.
I've actually always had very bad eating habits. Of course, I love all the stuff that is NOT at all good for me just generally, much less while I'm doing this treatment of course, so these really will be MAJOR changes for me. At 5'-11" tall and 240lbs. I can definitely stand to lose about 50-60lbs.
These are changes I've actually wanted to make for years but lacked the actual motivation. The reaction that my body had to the Harvoni though and my desire to be rid of the Hep C is enough to motivate me to the max. So, the lemon water all through the day combined with a raw vegetable and fruit diet it will be from here on out.
I never did take my temperature during those 2 days so I don't know if I had any fever. I just know that I felt like I had the flu so my guess would be that I probably did have a fever.
As to any stomach pain, I don't recall any but doubt I'd have noticed if I did. I have Grade III Anterior Spondylolisthesis, secondary to chronic Bilateral Interarticular Pars Spondylolyses among other spinal issues. These issues cause severe sciatica in both of my hips and legs along with lower back pain. Unfortunately, the surgeons won't touch me. They say I'm too high-risk and that I require several different surgical procedures and not one of them believes that I'd be any better off when they were done. So I've been a chronic pain patient since 2000 and am already on a high-end extended release opiate and walk with the assistance of a cane now for the last 7yrs.
I'm also already on alprazolam for severe panic disorder and low dose Prozac for depression I think these meds may tend to keep any emotional type SE's at bay thankfully.
Of course I'm aware that all these chemicals have to be processed by my liver and that is very troubling in and of itself to me, but living in constant pain and having panic attacks almost daily is something that I definitely do not miss in the least bit. So, with those meds it's pretty much the same situation as with the Harvoni.....My doctors and I have had to ask the question, do the benefits outweigh the risks and/or the side-effects? Conclusion: YES

So BubbaT ~ Am I correctly reading your post that you do NOT have the diarrhea and vomiting SE's any longer? And the SE of swollen hands and fingers w/ small blisters has stopped? That now you are experiencing little to NO side-effects at all?

Crazycanuck ~ Am I correct that you are no longer having the diarrhea and vomiting SE's since you've started the steady lemon water and raw veggie and fruit diet?

Because they'd be convenient, How about those water flavoring products , are they OK to use? I know a lot of them have caffeine in them. I wonder, do they make one that won't produce a negative effect?

God bless and keep you both safe and healthy. And again, thank you very much.

Sincerely,
~ Rich   aka   UwasvWahya
 
Title: Re: Harvoni Side effects
Post by: Katie on April 19, 2015, 07:40:18 pm
Hi Rich..All the advice given to you is good and healthy eating will benefit you in many ways.  I can't tolerate caffeine but decaf doesn't bother me and I love the coffee flavor.  If you get a good brand it tastes just as good and I have served it to coffee snobs who didn't have any idea.  ;)

Since it still is the flu season, it may have been an unfortunate coincidence, but I am glad you realize your diet wasn't very good for you or your liver.

Once your digestive system stabilizes, if you eat things you like in MODERATION, you shouldn't have to give up everything.  It isn't good to feel as if you are being punished because when you do "fall off the wagon" it is more likely you will over do it.  This holds true with healthy dieting as well.

Good luck to you and hope you start feeling better.

Katie
Title: Re: Harvoni Side effects
Post by: UwasvWahya on April 19, 2015, 07:48:08 pm
Yes. Stage 4 liver damage calls for 24 weeks tx. If Harvoni was around only 2 years ago I most likely would have got by with 12 weeks tx. But that is how the cookie crumbles, the way my liver was deteriorating I might have been taken out by a bought of the flu or even a bad cold. I had to give up working last year because of the disease and now I feel confident and am slowly getting back at the grind.

I have noticed more pronounced myalgia in my major muscles in the last month which has started to effect me to some extent but I am hoping that this too goes away post treatment in a short time. The great part is that for the first time in two years my back is not hurting from muscle weakness as my strength is good because my liver is obviously doing the job of supplying adequate energy to my system.

We have not heard of people vomiting after taking harvoni. The instruction sheet indicates that the med is metabolized within 4 hours. So I would talk to your specialist about what to do if you should experience this again.

Drink lots of water and try to avoid anything that will upset your stomach is all I can suggest as there is no doubt that harvoni very quickly speeds up the way your renal system works!

Antacids are a no no within 4 hours of taking Harvoni so the best way to balance your system is to increase your water intake. I have been taking the pill on an empty stomach and at first did notice that there was some nausea associated with the drug after about 2 hours but and I stress this, if I drank some water it quickly passed.

It is documented that the lidiposvir component in Harvoni is best metabolized in a more acidic environment, so my reasoning has been to avoid foods that will absorb stomach acid until the Harvoni is metabolized and instead use water after taking the pill to ease the acidity of an empty stomach then eat about 2 to 4 hours after taking the drug.

Hope you get over the nausea and reach SVR.
We all deserve a chance to finally see the end of this nightmare disease!

God Bless All
Eric

Hello Mugwump ~

Thank you for your response. It seems that everyone is in agreement that water and fresh fruits & vegetables is the key for dealing with the side effects of the diarrhea and vomiting which I experienced.
Needless to say I will be making major changes to my dietary intake in order to successfully complete my Harvoni treatment plan. These are actually changes that I've wanted to make anyway in an effort to drop some excess weight.
I'm a chronic pain patient due to major spinal issues and although I was only recently diagnosed with Hep C in 2011, my Gastroenterologist has concluded that my date of infection was in the early 1980's. 
While I was reading your post where you mentioned your myalgia, it got me wondering now just what kind of a role the Hep C has been playing in my pain situation all these years and I'm hoping now to notice a decrease in my pain levels upon completion of my Harvoni treatment. I had never realized the two things could be related until I read that in your post. This could be a very welcome side benefit from Harvoni. Any drop in my pain level would be most welcome as I'm sure you can imagine. Once again, thank you for your response.

God Bless you and keep you healthy.

Sincerely,
~ Rich   aka   UwasvWahya
Title: Re: Harvoni Side effects
Post by: SunIsOut on April 19, 2015, 08:19:16 pm
Well another 8 hours painting the gazebo.  I did a two-tone and it is really slow around the lattice.  The ceiling took 4 days with priming, painting and getting into all the tight spaces.  My neck hurt from looking up so much but I did not take any pain killers.  I got the first coat of concrete paint on the floor and will do one more coat all around.

Given that this is a side effects forum for Harvoni, I must say that I do not have anything that I consider new!  I have had the tinnitus and blurry vision for a while and hope by EoT that it will pass.

I do not take any other medications except herbal stuff and eat fresh foods for about 12 years now.  I do not get sick and do not have allergies, or get colds say maybe once in 4 or 5 years.  Definitely have the low blood platelets and stage 4 on the hep stuff.

I think after this week I will have worked my way to the sailboat and can start getting it ready for the season.  I still have to plant my annuals and clean the shed.  I have always had a work hard habit and just get medieval on my home projects.

I have two sailboats to prepare this season where one is to sell it and the other is to sail it!  :)

For those commenting on changing their eating habits.......By all means do but eat good stuff and your fine.

I feel genuinely bad for so many of you with these compounded ailments and honestly do not have a remedy save try to find alternative therapies, do not eat chemical food (if you cannot pronounce what is on the label.....don't eat it).  Go fresh, minimize restaurants.  This is a recommendation for all folks not just Harvoni patients. 

Before I changed my diet some 12 years ago I was having major allergies (two sinus surgeries), get sick and then I thought after the second sinus surgery and I thought I was getting another major infection that this must be coming from the inside not the outside.  This was my personal grand epiphany and I started doing colonic hydrotherapy and basically flushing my body out.  I have not looked back since.  I use a netti pot if I feel stuffy but have not used in it a long time either. 

The old saying that 'You are what you eat"  is a truism!!!!  ;D
Title: Re: Harvoni Side effects
Post by: SunIsOut on April 19, 2015, 08:20:26 pm
Have a great week everyone!  :D
Title: Re: Harvoni Side effects
Post by: Katie on April 19, 2015, 09:52:08 pm
Good job Sunisout!  Happy you are getting everything done so you can have the time for your sailing!  From previous photos I know your yard is beautiful and I can tell you do quality work.  I have my remodel done and am getting it organized.  Still have to build a bookcase to get rid of some boxes.  I decided to cover the daybed with Tie Dye and it looks awesome!  A very cheery craft room and I can hardly wait to be creative on a smaller scale!  Of course I need to get out in the garden soon so that may wait for a stormy, rainy day.  It will be a blessing to have such a cheery room to work in this winter.  I did good!

I am feeling better but still lack afternoon energy.  Of course, I never experienced any horrible side effects other than difficult fatigue and depression for about 10 days during week 8 & 9 of treatment.  It came one day and 10 days later it was gone.  Very strange!  The rest was a piece of cake for me.  I have blood work tomorrow to see if I have cleared the virus and it is almost 8 weeks since I ended the treatment so I am a bit anxious but hopeful.  I won't get results until the 27th and I'll let everyone know.  Either way, I am feeling better than I have in years so it is all good and moving in a positive direction.

Hoping everyone has a good week!

Katie
Title: Re: Harvoni Side effects
Post by: UwasvWahya on April 19, 2015, 09:52:42 pm
Hi Rich..All the advice given to you is good and healthy eating will benefit you in many ways.  I can't tolerate caffeine but decaf doesn't bother me and I love the coffee flavor.  If you get a good brand it tastes just as good and I have served it to coffee snobs who didn't have any idea.  ;)

Since it still is the flu season, it may have been an unfortunate coincidence, but I am glad you realize your diet wasn't very good for you or your liver.

Once your digestive system stabilizes, if you eat things you like in MODERATION, you shouldn't have to give up everything.  It isn't good to feel as if you are being punished because when you do "fall off the wagon" it is more likely you will over do it.  This holds true with healthy dieting as well.

Good luck to you and hope you start feeling better.

Katie

Hi Katie ~

Thank you for your response. Yes, I am very happy that I joined this forum, it's exactly what I needed. I've received lot's of great advice which I'm extremely grateful for and I'm now gung-ho again about the Harvoni treatment. I just want to speak with my Gastroenterologist tomorrow morning so I can tell him what happened and get his input on the situation.
As to my diet, I've actually wanted to change my eating habits for years, mostly to lose excess weight which would relieve some of the pressure on my lower back and of course for the other obvious health benefits. I have just lacked the motivation to stick to a strict diet but the necessity of dietary change in order to complete the Harvoni treatment now has me committed.
I had to chuckle when I read about the coffee switch in your post because I did that exact same thing to an old roommate for an entire week and he still doesn't know about it to this day. I had to purchase a large container of Folger's decaf out of necessity, as it was the ONLY coffee left in the ONLY market in town during a major blizzard, and we were completely out of coffee. For an entire week we "woke-up" drinking decaf and I was the only person in the house that knew it was decaf because I had dumped the green can of decaf into the regular red Folger's container knowing full well that this coffee connoisseur would be clueless as long as he didn't see the green can.....lol ;D
Title: Re: Harvoni Side effects
Post by: BubbaT on April 20, 2015, 12:06:05 am
Rich, you're a trickster! Ha coffee trick, lol

Just to clarify on the questions you asked,  at week 7,  I am feeling much better,
The blisters are gone and my GI took of picture to send to Gilead, I continue with loose stools, but no more vomiting issues... And I'm also like you in regard to weight.

I'm 5'8". and 226 at the start of Harvoni, now I'm 212,

 I lost 12 lbs in 2 weeks and I feel like I can continue to lose weight now that I have got my diet under control, I'm convinced that I'm helping my liver by not giving it animal protein like red meat, I had some serious sides right before starting and the first 2 weeks, but once I started the lemon water and went to fruit and salads and very low salt soup , I feel good... And I haven't felt good in20 years...

Also I'm eating wild sockeye for protein, and brown organic rice, and using raw organic stevia in my lemon water...


So keep on my friend, you are going to start feeling well soon...
Title: Re: Harvoni Side effects
Post by: UwasvWahya on April 20, 2015, 05:03:06 am
Rich, you're a trickster! Ha coffee trick, lol

Just to clarify on the questions you asked,  at week 7,  I am feeling much better,
The blisters are gone and my GI took of picture to send to Gilead, I continue with loose stools, but no more vomiting issues... And I'm also like you in regard to weight.

I'm 5'8". and 226 at the start of Harvoni, now I'm 212,

 I lost 12 lbs in 2 weeks and I feel like I can continue to lose weight now that I have got my diet under control, I'm convinced that I'm helping my liver by not giving it animal protein like red meat, I had some serious sides right before starting and the first 2 weeks, but once I started the lemon water and went to fruit and salads and very low salt soup , I feel good... And I haven't felt good in20 years...

Also I'm eating wild sockeye for protein, and brown organic rice, and using raw organic stevia in my lemon water...


So keep on my friend, you are going to start feeling well soon...

Hi BubbaT ~

LOL....yeah that coffee trick was pretty funny for sure.

I want to thank you for sharing all this information with me because I am now once again excited about this Harvoni treatment whereas I had lost that after having the reaction I had to the medication.
The best way I can think to describe what happened to me is that it was "explosive" and "violent". I truly felt as though I had been poisoned. I can't remember ever having felt like that in my life before. I don't think I'd have ever ingested another Harvoni had I not joined this group....seriously. But after you and others here have shared with me your experiences and methods, I am once again excited about it.

Glad to hear that those blisters cleared up for you. And very happy to read that the vomiting stops completely.
Loose stools I can handle with no problem. It's the explosive diarrhea that I can do without. I want to be able to cough or sneeze without having to jump in the shower and change my shorts, ya' know? If I happen to be out and about, or even just home by myself and I feel the need to pass gas, I just want to be able to do so without the fear of "Sharting" :-[

I agree with you that your probably helping your liver big time by the elimination of red meats from your diet. I will be doing the same exact thing.

I'm looking forward to the added benefit of the weight loss because I do not like being as heavy as I've become, it's uncomfortable for me.

What do you use as a salad dressing BubbaT? And I've also been meaning to ask you what time of day you take your pill ? Do you take it with a meal? Before? After?

I'm so looking forward to being able to honestly say that "I feel good" again.

God Bless,
~ Rich   aka   UwasvWahya
Title: Re: Harvoni Side effects
Post by: Mugwump on April 20, 2015, 02:52:58 pm
LOOKING FOR 24 WEEKS PATIENTS... Hi everyone. I want to hear from people doing Harvoni without Riba that are at the tail end of their treatment. I want to compare notes! I have 13 days left out of 168 pills. I started having "pinching" pains in my liver area and was wondering if I am starting to "burn" the remainder of my liver! I have been pain free since week 3 or 4 and the pain returned at week 21 or so. Anyone in the 24 weeks regimen feeling pain?
Mario, yes there is still some times when my inflamed liver gives me some discomfort. And in the past month and a half unfortunately both my wife, who does not have HCV, and I have caught the annual galloping crud! She had the flu vaccine, I did not so I am certain that it was the really bad strain that slipped under the radar this year. It hit like a freight train and caused me weeks of HCV like symptoms during treatment.

So how much of my symptoms are associated with the flu and side effects is a moot point. I will tell you that at week 12 to 14 of treatment I felt so good that I just knew Harvoni had already completely eliminated the beast.

The flu season this year was brutal. For those who do not have severe liver damage long term and never went through interferon and a treatment failure it is completely understandable that every ache and pain causes concern. Mario in my case I am certain because of the way I felt at 8-14 weeks of treatment that all these symptoms are coming from other something other than the Harvoni.

I guess losing my ability to do heavy work and having constant flu like symptoms for years is something that has made me a little insensitive but yes here is hoping that I quickly get back to the way I was feeling before this years flu season hit. This crap is getting the way of going fishing and even though I never signed a pre-nup with my wife waiving her ability to restrict my fishing rights, like one of the people we fish with did, my wife understands and puts up with our philosophical mantra "I fly fish, therefore; I am!"



 
Title: Re: Harvoni Side effects
Post by: CHepCFree on April 20, 2015, 07:37:35 pm
During my treatment on Harvoni I experienced shortness of breath.   This has continued after end of treatment.   I just received results back from a chest x-ray and I have some serious changes to lungs which was not present previously.  I have to do some follow-up but this is pretty scarey stuff.    Please contact your physician if you are having any lung or breathing issues.   
Title: Re: Harvoni Side effects
Post by: Katie on April 20, 2015, 07:49:18 pm
That would be scary!  What kind of changes, if I may ask?  Did you have any kind of flu or cold while on treatment?  So sorry to hear you now have something else to deal with.

My thoughts and good wishes go out to you!

Katie
Title: Re: Harvoni Side effects
Post by: Defendo on April 20, 2015, 10:21:51 pm
Thanks Katie,

I spoke to my speciality pharmacy and they repeated that gout is not a reported side effect of Harvoni.  I disagree, but who am I? 

My foot and calf have improved significantly.  The pharmacist told me that I could take Ibuprofen for pain and inflammation. So I started taking it Saturday and it has made a huge difference.  Today I am able to walk without limping or pain.  But I am just staying off of my feet as much as I can until I am certain all these has subsided.

The pharmacist also told me that I could take Colcrys with the Harvoni for episodes of gout.  But that would be a last resort for me.  I will stick to the sour cherry juice and Ibuprofen to manage any future episodes.

Thanks for your help and concern   ;D
Title: Re: Harvoni Side effects
Post by: Katie on April 20, 2015, 10:33:45 pm
Who are you?  You are the guy experiencing all the discomfort, not them.  Stay proactive!  Glad you are getting some relief.  Crutches or a cane might benefit you until it is all gone.

Wishing you well and know this journey can be tough but in the end it will be worth it!

Katie
Title: Re: Harvoni Side effects
Post by: KC on April 21, 2015, 12:15:34 am
I am new to the forum. I have been taking Harvoni since March 18, 2015. I was just declared as "UNDETECTED" for the virus today! I have probably had Hep C for decades. Obviously, I am very excited that I am possibly cured. My health was starting to be affected the past couple years.

As for the side effects from Harvoni, I am almost 5 weeks in treatment and I have had very few. I actually haven't felt so good in a long time. Two or three mornings a week I wake up with a slight headache but as soon as I get up and move around it goes away. I do have muscle pain and body aches in the morning but again, I get up and they subside. I have tons of energy but have trouble falling to sleep once or twice a week. To me, none of this is a big deal in order to be rid of this nasty virus. I take the Harvoni about 12 midnight. Again, I can't stress that I am feeling pretty good overall! I know that there are some that get more side effects and I feel very fortunate. I do drink A LOT OF WATER. When I say a lot I mean all day long. Well more than a gallon. Not sure if that could be helping but I have to wonder. Just saying...

I hope this post gives encouragement to you. All of my numbers (blood work) are down to where they should be and as of today, I am undetected. I will be on treatment for 12 weeks. I was very nervous in the beginning of side effects but I am a walking, talking believer that they are very mild at least to me and I am a whimp. 
Title: Re: Harvoni Side effects
Post by: Walkinthawoods on April 21, 2015, 07:19:17 am
Hello Everyone ~

I have been reading posts here for several hours now and it seems to me that I've found exactly the forum that I need to join, so here I am.
I was kind of blindsided when diagnosed with Hep C in October of 2011. Long story short, I had a drug abuse issue (relapsed after 13yrs. clean) that led to some legal problems which consequently landed me in prison. While being processed into the NY State prison system you undergo a complete medical screening. It was during this process that I discovered that I was Hep C positive.
Thankfully and gratefully, I am clean & sober again now since November of 2011.
Since my release earlier this year I have been seeing a gastroenterologist.
After going over my medical history, drug abuse history and diagnostic test results, he is convinced that I became infected sometime back in the early 1980's much to my surprise.
He just prescribed me 12 weeks of treatment with Harvoni which my insurance thankfully covered after additional testing.
Well, I picked up the prescription Friday afternoon and took my very first tablet at 6pm. At about 10pm, out of nowhere, I awoke from a sound sleep and proceeded to the bathroom where I discovered that I had a very severe case of diarrhea.
As if this wasn't bad enough in and of itself, approximately 5 minutes after entering the bathroom I began to violently vomit also. The diarrhea continued to attack all night long. Not to be gross, but I literally went through easily a dozen pair of boxers. I felt as though I had a bad case of the flu over the next 2 days and I have not taken another Harvoni tablet since and do not want to until I have a chance to talk to my gastroenterologist first thing Monday morning.
Of course, the curiosity is driving me crazy. Has anyone else had this kind of an experience with Harvoni? If so, is this something that goes away after a few days or does this type of side-effect continue?
Title: Re: Harvoni Side effects
Post by: Walkinthawoods on April 21, 2015, 07:28:41 am
I had one day of similar violent vomiting.  Gastro immediately called me in to run blood work.  Was concerned about the pancreas levels ? (need to do some research on this) but said since the symptoms subsided so quickly he was not too concerned and to keep him posted.  Only dealing with dull headaches at this point.  Three weeks into treatment.  Enzyme levels have normalized already.  Miracle drug!
Title: Re: Harvoni Side effects
Post by: Kathy C on April 21, 2015, 03:35:30 pm
My Hep-C Dr. Called me last week to say that my latest lab work showed that I am undetected.

I am very happy, just praying that it stays that way.
I am doing good, my stomach is somewhat better but I have a bloated stomach often.

Good luck to everyone with hep-c.  Try and stay positive.
Title: Re: Harvoni Side effects
Post by: Katie on April 21, 2015, 03:43:35 pm
Congratulations Kathy!  How great for you so just keep doing what you are doing and celebrate!   8)

Katie
Title: Re: Harvoni Side effects
Post by: Valsblessing on April 22, 2015, 05:26:24 pm
Hello...so glad to have this forum...I have been following since 3/11 which was one week before I began HARVONI. My question is....anyone else so fatigued that you are basically down? My only real symptoms are mild headache and constant, unrelenting fatigue. I just started having the fatigue 6 mos. prior to treatment and now it's worse! Thank God my husband is taking over the reigns at our business because there is no way I could work right now! I see so many people feeling more energy and holding down jobs and I can't figure this out! My mind does feel clearer for sure....but, body is not cooperating. I was told all my childhood I had a "weak" liver, have never been able to take OTC drugs even, born very early and jaundiced., resulting in blood transfusions. Just need to hear if there are others out there sleeping through their treatment? Thank you and may we all be free soon!
Title: Re: Harvoni Side effects
Post by: davidsconfused on April 22, 2015, 06:24:00 pm
Hello...so glad to have this forum...I have been following since 3/11 which was one week before I began HARVONI. My question is....anyone else so fatigued that you are basically down? My only real symptoms are mild headache and constant, unrelenting fatigue. I just started having the fatigue 6 mos. prior to treatment and now it's worse! Thank God my husband is taking over the reigns at our business because there is no way I could work right now! I see so many people feeling more energy and holding down jobs and I can't figure this out! My mind does feel clearer for sure....but, body is not cooperating. I was told all my childhood I had a "weak" liver, have never been able to take OTC drugs even, born very early and jaundiced., resulting in blood transfusions. Just need to hear if there are others out there sleeping through their treatment? Thank you and may we all be free soon!

I've been so tired and sleepy I haven't been able do much of anything since about 5 hours after I took my first Harvoni and I like 8 days to go on my 12 weeks. Basically I've lost almost three months since I've had three days this whole time I've felt like and was able to do much, consisting of two half days and two whole days and they weren't consecutive. These two whole and two half days were the best days  I've had in at least three years, though. These days gave me great hope for when this is over and I get the Harvoni out of my system. On top of this I've had bad muscle and joint pain ranging from aggravating to bad for over a month, now. If it gets rid of the HCV it was well worth it, though.
Title: Re: Harvoni Side effects
Post by: Valsblessing on April 22, 2015, 06:56:52 pm
Davidsconfused....thank you for responding. I was really feeling like the Lone Ranger here. I'm not glad you are tired all the time too, but, misery loves company. I haven't wanted to whine about this because I di been incredibly blessed to be getting this off my back! I feel guilty because I'm barely functioning and also concerned about after treatment? When did you start your HARVONI? I am 5 weeks in on this Thursday. The brain fog has greatly improved. Headache about a 4 on a scale of 1-10....how about you? Let's stay in touch okay? I wanna see if your fatigue subsides, or mine. Take care.....appreciate the feed back.
Title: Re: Harvoni Side effects
Post by: Valsblessing on April 22, 2015, 07:05:06 pm
Davidsconfused....just noticed you did mention only 8 days left! Yay! Congrats on that. Will you do me a huge favor and let me know when the fatigue lifts after you are done? I don't get to have a VL till June 12th and I need all the encouragement I can get....:) thanks again.
Title: Re: Harvoni Side effects
Post by: BubbaT on April 22, 2015, 07:46:30 pm
Hi BubbaT ~

LOL....yeah that coffee trick was pretty funny for sure.

I want to thank you for sharing all this information with me because I am now once again excited about this Harvoni treatment whereas I had lost that after having the reaction I had to the medication.
The best way I can think to describe what happened to me is that it was "explosive" and "violent". I truly felt as though I had been poisoned. I can't remember ever having felt like that in my life before. I don't think I'd have ever ingested another Harvoni had I not joined this group....seriously. But after you and others here have shared with me your experiences and methods, I am once again excited about it.


Glad to hear that those blisters cleared up for you. And very happy to read that the vomiting stops completely.
Loose stools I can handle with no problem. It's the explosive diarrhea that I can do without. I want to be able to cough or sneeze without having to jump in the shower and change my shorts, ya' know? If I happen to be out and about, or even just home by myself and I feel the need to pass gas, I just want to be able to do so without the fear of "Sharting" :-[

I agree with you that your probably helping your liver big time by the elimination of red meats from your diet. I will be doing the same exact thing.

I'm looking forward to the added benefit of the weight loss because I do not like being as heavy as I've become, it's uncomfortable for me.

What do you use as a salad dressing BubbaT? And I've also been meaning to ask you what time of day you take your pill ? Do you take it with a meal? Before? After?

I'm so looking forward to being able to honestly say that "I feel good" again.

God Bless,
~ Rich   aka   UwasvWahya

Hey Rich, how you doing this week?
I take the pill in the morning when I first wake up, usually chase with a big lemon water, maybe have a banana
Or orange with it, and I'm good for 4hrs, then stay with low salt, no artificial sweeteners , no sugar, only raw stevia, the glucose level is a concern when you are F4, by all means don't use aspartame !

Your diet is the most important thing right now that you can do to help the liver mitigate all this WAR that's going on inside of your body, just like you mentioned about the violent vomiting episode, it was bad for me as well, but I'm convinced as the Harvoni kills the virus and you help by your diet, that gives your liver a chance to recover for all the hell its been through, However many years you been fighting hepc... Me it's been 35+,

the dressings I like are good olive oil and cider vinegar raw organic. Love Italian .
I start week 9 Tuesday .

Ps I wasn't laffing at you, but the sharting line was funny, I know exactly what you mean, the first 4 weeks I was a regular in my office... Fan on...
The GI told me most of his complaints was diaherra...

Get well my friend..

Title: Re: Harvoni Side effects
Post by: Mugwump on April 22, 2015, 08:18:57 pm
UwasvWahya and Bubba

When I first started on Harvoni I swear that I could have powered a natural gas engine. I was even tempted to do the blue angel right in front of my GI to prove it. I was a walking woopie cushion. Fortunately it eased up by Christmas when we had company but for the first month and a half it was down right ridiculous!  I even cut one that made my clinic nurse wince right in her office on the first follow up. So to say that there are no effects on the digestion, well at least until your liver starts to work properly again is rather narrow minded IMO.

I felt like this guy with the onset of anxiety, a bad temper and fears about my health!
https://www.youtube.com/watch?v=UYSMm0Oj5HU
Title: Re: Harvoni Side effects
Post by: Katie on April 22, 2015, 08:31:04 pm
You definitely have a way with words Mugwump!  Hahahaha
Title: Re: Harvoni Side effects
Post by: UwasvWahya on April 22, 2015, 09:06:03 pm
UwasvWahya and Bubba

When I first started on Harvoni I swear that I could have powered a natural gas engine. I was even tempted to do the blue angel right in front of my GI to prove it. I was a walking woopie cushion. Fortunately it eased up by Christmas when we had company but for the first month and a half it was down right ridiculous!  I even cut one that made my clinic nurse wince right in her office on the first follow up. So to say that there are no effects on the digestion, well at least until your liver starts to work properly again is rather narrow minded IMO.

I felt like this guy with the onset of anxiety, a bad temper and fears about my health!
https://www.youtube.com/watch?v=UYSMm0Oj5HU



Hahahahahahaha !!! Mugwump, your hilarious bro  ;D  That kinda gas a fella' can have some serious  fun with if he gets creative. It's when a fart becomes some "shart" that worries me.  :o
Title: Re: Harvoni Side effects
Post by: BeWell on April 23, 2015, 03:18:40 pm
Wonder what you think of this article
http://www.healthline.com/health-news/allergy-drug-could-best-sovaldi-harvoni-040815
Not sure if this will come as a link. If not just copy it to your browser.

Get well,
Mila
Title: Re: Harvoni Side effects
Post by: dragonslayer on April 23, 2015, 04:12:49 pm
Wonder what you think of this article
http://www.healthline.com/health-news/allergy-drug-could-best-sovaldi-harvoni-040815
Not sure if this will come as a link. If not just copy it to your browser.

Get well,
Mila

Not sure why you posted this in the side effects thread, but this info has previously been posted in the research section:  http://forums.hepmag.com/index.php?topic=2610.0

So far, it seems to do a decent job with mice!
Title: Re: Harvoni Side effects
Post by: BeWell on April 23, 2015, 10:47:54 pm
Sorry got lost again... Damn side effects... Anybody saw my thread???
Title: Re: Harvoni Side effects
Post by: UwasvWahya on April 24, 2015, 02:03:28 am
(http://i61.tinypic.com/30aq8eb.jpg)
Title: Re: Harvoni Side effects
Post by: Mugwump on April 25, 2015, 12:28:42 am
@UwasvWahya

All I can say is duck tape and photo shop is a blast! Come to think of it duck tape and a depends might help if you are worried about it.

I was tempted to temporarily get a seniors chair with a lid for the duration and sleep in the back room with the cats!

I suspect that those of us with liver damage will necessarily experience more bowel disturbance than most. But as I stated and I am F4 and was F2-3 in 2004 when I underwent 48 weeks of peg/riba. At that time I did not experience as much of a gas blast during treatment.

You should start to have less bowel trouble very soon so HANG IN THERE, we are all pulling for you!

All the best
Eric
Title: Re: Harvoni Side effects
Post by: philsky on April 25, 2015, 12:45:56 am
I am on day 14 and I feel like a new man. Fog has lifted, mild headache once in a while, however, my libido is like a 20 yr old! Also, my sore hands and arthritis like symptoms are disappearing. I could tell after day 2 on Harvoni that it was working. What a life saver.
Title: Re: Harvoni Side effects
Post by: philsky on April 25, 2015, 12:49:17 am
I should have mentioned that as a safety precaution, I started to take a probiotic a few days before beginning Harvoni and I have not noticed any rough lower GI problems at all. I still take vitamins and the probiotic daily and compared to Pegasys , this is a cake walk!
Title: Re: Harvoni Side effects
Post by: Mugwump on April 25, 2015, 01:04:28 am
I should have mentioned that as a safety precaution, I started to take a probiotic a few days before beginning Harvoni and I have not noticed any rough lower GI problems at all. I still take vitamins and the probiotic daily and compared to Pegasys , this is a cake walk!
Welcome philsky!
Come to think of it I went out and went on a Greek yogurt binge before Christmas. I used it with olive oil and made my own salad dressings along with feta cheese. My wife does not like olives but I know that they are great with digestive issues as is a good yogurt. It may have helped me get over the gas blasts.

Great to hear you feel the way I did after the first month of treatment. It is amazing how having your liver suddenly do the job it was made to do for the first time in years can be so uplifting..

@UwasvWahya your turn is coming this is a miracle drug!

Eric
Title: Re: Harvoni Side effects
Post by: Wilson on April 28, 2015, 12:50:03 am
I have not posted in about a 40 days. I finished medication on the 10th of march. 30 days post  treatment still undetected. My physician says based on the research trials if your clear at 30 days post. Then your chances of success increase to 99.96%. I have not thought about in over a month. I don't have to see the physician any more. She wants me to do virial load first week in June. She'll call me with results. We had the 120 day post talk last week. She believes I am cured.  I am finished thinking about past. Now I can relax. Moving on. Best of luck to you all.
Title: Re: Harvoni Side effects
Post by: Katie on April 28, 2015, 01:09:47 am
Congratulations Wilson!  I came back Undetected at my 8 week post treatment just this week and am feeling good.  I am having another blood draw in 8 more weeks, primarily because I was still detected at EOT as a precaution, I guess.

SO move forward with JOY and live life to it's fullest!

Here's to Harvoni!

Katie
Title: Re: Harvoni Side effects
Post by: Mugwump on April 28, 2015, 10:27:33 am
Congratulations Wilson!  I came back Undetected at my 8 week post treatment just this week and am feeling good.  I am having another blood draw in 8 more weeks, primarily because I was still detected at EOT as a precaution, I guess.

SO move forward with JOT and live life to it's fullest!

Here's to Harvoni!

Katie
Oh Katie that is marvelous! I still have 2 weeks to go and because I was VL <15 at 3-4 weeks and right now I am finally in shape to actually go back to working part time for the first time in over two years I thank my lucky stars that we lived long enough to see this. Get out and get yourself a nice silver slab and do it on the BBQ with this;

As a marinate mince fresh young ginger root, minced garlic, a good sushi grade soya sauce, one small sprig of fresh thyme, fresh fine ground black pepper, cooking saki and a very small amount of lemon juice and sweetener of your choice.

Fillet the fish but leave the skin on, de-bone as much as possible then marinate for several hours in a fridge.
Dry the fillets and oil the skin with a good cooking oil.
Then on a low temp grill place the fillets skin down and grill slowly on a low grill heat and cover until the fish is completely firm and beautiful.
Serve with sticky rice and fresh fiddle heads roasted and then finished in a pan with a small amount of the marinate that was left over from the fish.
I like to have eel grass or sea lettuce with coho as it is the tradition of the west coast to have a sea vegetable with coho.

Wilson thank you for giving us all a boost with the good news!

Eric
Title: Re: Harvoni Side effects
Post by: Katie on April 28, 2015, 01:55:11 pm
Oh Katie that is marvelous! I still have 2 weeks to go and because I was VL <15 at 3-4 weeks and right now I am finally in shape to actually go back to working part time for the first time in over two years I thank my lucky stars that we lived long enough to see this. Get out and get yourself a nice silver slab and do it on the BBQ with this;

As a marinate mince fresh young ginger root, minced garlic, a good sushi grade soya sauce, one small sprig of fresh thyme, fresh fine ground black pepper, cooking saki and a very small amount of lemon juice and sweetener of your choice.

Fillet the fish but leave the skin on, de-bone as much as possible then marinate for several hours in a fridge.
Dry the fillets and oil the skin with a good cooking oil.
Then on a low temp grill place the fillets skin down and grill slowly on a low grill heat and cover until the fish is completely firm and beautiful.
Serve with sticky rice and fresh fiddle heads roasted and then finished in a pan with a small amount of the marinate that was left over from the fish.
I like to have eel grass or sea lettuce with coho as it is the tradition of the west coast to have a sea vegetable with coho.

Wilson thank you for giving us all a boost with the good news!

Eric

Oh Eric...will you marry me!  I could use a gourmet cook!  HA HA.  I actually have some wonderful sockeye in the freezer, but won't be Bar-B-Q ing today.  We have 90 mph gusts with a downpour and think we've gotten about 4 inches of rain last night & this morning.  The power just came back on so I can have my coffee!

You are on the home stretch so keep us posted how you are doing.  I am feeling good but get really tired early afternoon and my energy level is low, but one little step at a time.  We must be patient and let our bodies heal!

Hope everyone is moving towards clearing this alien monster.  It is amazing!

Katie
Title: Re: Harvoni Side effects
Post by: Karen1124 on April 28, 2015, 02:47:55 pm
Hi Katie,
Congrats to you girlfriend! Everyone is doing so well!! I haven't been getting notified of post for some reason I am glad I checked it!
So happy for you! Have a great day! Life is good!! Karen
Title: Re: Harvoni Side effects
Post by: mario555 on April 28, 2015, 02:49:20 pm
166 pills down and 2 to go! Can't wait! I will take my last pill tomorrow!
For all of you who finished your treatment and have received your VL4-8 or 12 please let us know how it turns out! It is so encouraging for people like me to see real world results...
Title: Re: Harvoni Side effects
Post by: mario555 on April 28, 2015, 02:50:23 pm
166 pills down and 2 to go! Can't wait! I will take my last pill tomorrow!
For all of you who finished your treatment and have received your VL4-8 or 12 please let us know how it turns out! It is so encouraging for people like me to see real world results...
Title: Re: Harvoni Side effects
Post by: mario555 on April 28, 2015, 02:51:23 pm
Sorry about the double posting, I screwed up somewhere...
Title: Re: Harvoni Side effects
Post by: Debula on April 28, 2015, 02:56:33 pm
Congratulations Mario555!
Wow you did it!  Please keep us posted on your outcome
Take care and good luck!!
Title: Re: Harvoni Side effects
Post by: Katie on April 28, 2015, 03:09:35 pm
Hi Katie,
Congrats to you girlfriend! Everyone is doing so well!! I haven't been getting notified of post for some reason I am glad I checked it!
So happy for you! Have a great day! Life is good!! Karen

Thanks Karen!  It was a nail biting 8 weeks but deep down, I just knew I would clear!  Harvoni is surprising many people with this EOT low detection and then later clearing, so everyone be positive and have faith that Harvoni is really a miracle cure!  Hopefully the side effects folks are experiencing after treatment ease up, and disappear.  There is still much to understand to get it right, in my opinion.

Good hearing from you!

Katie
Title: Re: Harvoni Side effects
Post by: mario555 on April 28, 2015, 03:14:23 pm
Debula. Thanks for the encouragement! I had a similar treatment history and my 'statistics' are also similar. I see you are facing 24 weeks also! I don't worry too much about the chances of success because 24 weeks is most probably "overkill" by 4 to 8 weeks (my view). I "felt" cured after week 17 or 18 which is the time where I got a second run of heavier side effects. Since then, it has been smooth sailing and I "feel" cured. So good luck and try to stay within the parameters of the people in the studies (ie; no weird diets, no special nutritional changes)
Title: Re: Harvoni Side effects
Post by: Katie on April 28, 2015, 03:26:57 pm
Hi Mario!  YAY...you are just about done after your long treatment!  Well done, my friend.  I experienced a similar situation during my treatment.  Week 8 & 9, I had a horrible bout of depression and fatigue for about 10 days that was something I had never gone through before.  Then one morning I woke up feeling great again!  No one has an explanation for this but I like yours!

I am excited to hear about your progress and anxious to hear you have joined the caravan of the cured.  Sending you JOY and healing light!

Katie
Title: Re: Harvoni Side effects
Post by: Debula on April 28, 2015, 03:58:16 pm
Debula. Thanks for the encouragement! I had a similar treatment history and my 'statistics' are also similar. I see you are facing 24 weeks also! I don't worry too much about the chances of success because 24 weeks is most probably "overkill" by 4 to 8 weeks (my view). I "felt" cured after week 17 or 18 which is the time where I got a second run of heavier side effects. Since then, it has been smooth sailing and I "feel" cured. So good luck and try to stay within the parameters of the people in the studies (ie; no weird diets, no special nutritional changes)

Thank you also for the encouragement!  When you say you "felt" cured -what did it feel like?  Sorry I am such a curious person I am probably driving everybody crazy with my questions
I never thought of that!  "Staying within the parameters of the studies"  Good point! 
Be well, take care and I hope for SVR to all!!

Title: Re: Harvoni Side effects
Post by: mario555 on April 28, 2015, 07:02:23 pm
Why do I say "felt"? Given the fact I only wanted 12 weeks for my treatment, I divided my 24 weeks into 2 treatments, the one I wanted and the second one for my (worrywart) doctor. I did my 1st 12 weeks and I experienced the same side effects as many people on this forum. Those side effects were stronger during week 6 to 9 than the other weeks. Some people on the forum postulated that during the big side effects, more viruses were dying than during the quiet weeks. I believed that was so.
During the "2nd treatment", my side effects were "really stronger" during week 16 to 18 and I felt shit was happening in my body! The fight was on! Now that I have past week 20, everything is quiet and I feel great except for the fact that I am leaking medicine!!
I am sure I am cured and I am taking the last few pills because of my wife's nagg...(oups!)
Please understand that this is an opinion so no references...
Title: Re: Harvoni Side effects
Post by: MEG on April 28, 2015, 09:32:29 pm
Congratulations Mario on finishing! I recall you suffering there for a while.

COngratulations Wilson on UNDETECTABLE!!!!

And to all, Katie this means you(!)  who are giving those of us still waiting so much hope!

I finished April 19 and my 4 week EOT is May 18...!
Title: Re: Harvoni Side effects
Post by: Katie on April 28, 2015, 09:39:58 pm
Congratulations Mario on finishing! I recall you suffering there for a while.

COngratulations Wilson on UNDETECTABLE!!!!

And to all, Katie this means you(!)  who are giving those of us still waiting so much hope!

I finished April 19 and my 4 week EOT is May 18...!

Glad to be of service Meg! HA!  Have a great evening everyone!

Title: Re: Harvoni Side effects
Post by: MEG on April 28, 2015, 09:42:21 pm
Thanks Katie!

I also wanted to report re: side effects that I'm finally, after one week off of Harvoni ,beginning to fall asleep and sleep soundly! I was using atarax to help me throughout the 12 weeks of treatment.

Tinnitus getting better---although it was never bothersome. Just knew it was present...heard it ;-)
Title: Re: Harvoni Side effects
Post by: audreywald on April 28, 2015, 11:09:24 pm
I do. They are at times excruciating. Don't know if this is the Harvoni or the Hep c Itself. I have 2 more months to go )out of 6) and I just hope they stop.
Title: Re: Forum
Post by: KC on April 28, 2015, 11:58:50 pm
I wish I could figure out this site. I think it is too big to manuver. I am no dummy but I give up trying to use this site. Makes me sad because it is good but too hard to use.... Not even sue if anyone will see this post. :
 :-\
Title: Re: Harvoni Side effects
Post by: Katie on April 29, 2015, 12:17:54 am
I see your post KC.  Why are you finding it difficult?  Maybe I could help.

Katie
Title: Re: Forum
Post by: dragonslayer on April 29, 2015, 12:35:05 am
I wish I could figure out this site. I think it is too big to manuver. I am no dummy but I give up trying to use this site. Makes me sad because it is good but too hard to use.... Not even sue if anyone will see this post. :
 :-\

KC, the forum community here is really not that big... If youre not used to using forums, its important to place your posts in the proper thread, or start a new one in the proper section.. This makes it much simpler for users to search for material theyre interested in.. For instance, its not really most appropriate to leave a comment about the difficulty youre having using the forum in a Side Effects thread within the On Treatment section.  There is a sub forum called the Off Topic forum which would be a better home for your post.. Stay with it; youll get the hang of it after awhile.
Title: Re: Harvoni Side effects
Post by: concerned father on April 29, 2015, 12:30:15 pm
I'm so happy to see all the positive results with this medication.  My daughter will be starting her treatment in early September.  I can't wait for this virus to be out of her body.
Title: Re: Harvoni Side effects
Post by: Long_Haul on April 29, 2015, 02:00:06 pm
Katie, that is awesome news, I knew you would make it. 4" of rain, sounds like you are having a monsoon, watch out for the tidal wave  :).

Mario,Congratulations on being done, good luck.

Meg, you too, I hope you can get out there and do some pedaling soon. How are you doing with the sinus issues?

Wilson, I'm in the same boat, just a couple of weeks behind.

I just got my 4 week post EOT results, still Undetected, so I can now say I am optimistic that I made it. Next blood work is late June for SVR12. I hope we follow the same path.

Anyone notice how much this waiting sucks, I can put my head down and do the protocols for treatment, but the waiting eats at me really bad.

AL
Title: Re: Harvoni Side effects
Post by: Katie on April 29, 2015, 02:41:59 pm
YAY AL!  Hey...waiting should now be a piece of cake as you haven't started to replicate again so let it go and enjoy the spring.  I am feeling so FREE and happy I am no longer a bio-hazard!  My next test is at 8 weeks and I am not going to give it a single thought.  What will be, will be and I worried enough for the past 8 weeks since I was still detected at EOT!

I am still low energy in late afternoon and I get really tired with the burning eyes as if I haven't slept for days...but I have been sleeping GOOD and waking up refreshed.  Seems every day gets just a little bit better and continuing to drink my water seems to help, so I am still flushing things out.  I also am having small subtle improvements with my skin.  It's getting smoother and the large pores I had for years are no longer noticeable. Even the bags under my eyes are almost gone (now I have wrinkles HA!), just little things like that so everyone stick to it and it will get better!

Scattered showers today, and the Alaska Marine Highway reported wind at 54 knots with gusts of 104 knots yesterday!  WOW...No wonder it sounded like a freight train coming through my bedroom window yesterday morning.  Lots of trees down along the highway but all's OK at my home front!

Katie
Title: Re: Harvoni Side effects
Post by: MEG on April 29, 2015, 11:51:43 pm
Hi Al! So happy that you're UNDETECTABLE at 4 weeks post EOT....ahhhhhh. That must feel so good.

My test will be on May 18 and indeed, the wait is hard but stuff keeps coming up on the home front recently that it's going faster than I thought it would.

I'm feeling better in subtle ways---not yet able to get on my bike---that will be my benchmark for being back!

Keep enjoying your increased healing and new life post HCV!
Meg.
Title: Re: Harvoni Side effects
Post by: philsky on April 30, 2015, 01:00:00 am
I am noticing things too. I had some skin conditions that are gone and my hair seems to be thicker and less "greasy". The aches and pains are going away and really no SFX from treatment on day 19. I have no results from my 2 week blood test, I think my G.I. is waiting until the 24 week time to let me know. It is hard getting used to being normal, the new normal that is. Other than that nasty virus that went around, no SFX at all. I am thinking that maybe some of us are looking a bit harder at little things because of expectations........knock on wood.....
Title: Re: Harvoni Side effects
Post by: kate0b1 on April 30, 2015, 06:38:18 am
@katie, im not signing on for wrinkles lol, i may ask to keep the bags if thats my choice  ;)

kate
Title: Re: Harvoni Side effects
Post by: Keanu2015 on April 30, 2015, 12:14:23 pm
Hello everyone!!! So glad to see you all  here. I'm happy to see you all are doing well (for the most part!)
Katie so glad to hear you are beating this thing and showing small improvements in areas we know our liver controls! I'm glad that weather didn't get to you!

I completed my 10th week today. No pain to speak of and outside of occasional insomnia I am feeling very positive about my chances! 8)

KC I saw your post and it made me want to comment instantly! Don't ever put your head down. You have to stand up and be positive!! Keep at it and you'll get it. (The site AND the dragon) Drink lots of water and try to exercise as much as you can handle. Positive Positive Positive!!!!! Seek and destroy

God bless you all on your journeys! ~ K
Title: Re: Harvoni Side effects
Post by: Debula on April 30, 2015, 01:43:23 pm
I am really happy to hear that just maybe my skin problems will improve
I can't wait to see what my new normal will be.  Have been so fatigued for so long that I don't remember how it was before
I have only been on Harvoni for 2 weeks but already my itchy skin is a little better

Blessing to all
Deb
Title: Re: Harvoni Side effects
Post by: SunIsOut on April 30, 2015, 09:17:31 pm
I am noticing things too. I had some skin conditions that are gone and my hair seems to be thicker and less "greasy". The aches and pains are going away and really no SFX from treatment on day 19. I have no results from my 2 week blood test, I think my G.I. is waiting until the 24 week time to let me know. It is hard getting used to being normal, the new normal that is. Other than that nasty virus that went around, no SFX at all. I am thinking that maybe some of us are looking a bit harder at little things because of expectations........knock on wood.....

Me too, I had some scaly parts on my arms that I thought was fungal and too many for the dermatologist to freeze but now they are going away! I go for my 8 week labs tomorrow. I have been doing a substantial amount of yard work and will be laying some pavers but already dug my landscape trenches some 300 feet, stained deck two tone, stained gazebo two tone, installed a new ceiling fan in gazebo, painted gazebo concrete floor and ceiling, cleaned out the shed and painted shelving inside and half-way done planting annuals.  I am tired at the end of each day and a litte sore in the morning but getting my DIY projects done!

Sailing soon!
Title: Re: Harvoni Side effects
Post by: Cute on May 01, 2015, 02:18:02 am
I love this forum. Really professional and useful place. I have learnt a lot.
My mother HepC sick. We discovered it in 2007.
Now she is on HepC treatment.
By the way, we are not from U.S., we are far from most of you. But Harvoni is very famous here. But few people can afford Harvoni, because of price. We don't have insurance plans here.
She is on Harvoni treatment now. It is already 5wk. So far, everything is manageable. She has constant headaches and dizziness. But she had headaches before the treatment.
She is F3, A2. Now we are on 8wk Harvoni, but I am really going to extend her treatment.
Title: Re: Harvoni Side effects
Post by: Debula on May 01, 2015, 09:38:18 am
Quote
Me too, I had some scaly parts on my arms that I thought was fungal and too many for the dermatologist to freeze but now they are going away! I go for my 8 week labs tomorrow. I have been doing a substantial amount of yard work and will be laying some pavers but already dug my landscape trenches some 300 feet, stained deck two tone, stained gazebo two tone, installed a new ceiling fan in gazebo, painted gazebo concrete floor and ceiling, cleaned out the shed and painted shelving inside and half-way done planting annuals.  I am tired at the end of each day and a litte sore in the morning but getting my DIY projects done!

Sailing soon!

You sound like you have so much energy! That is great!  Can you come over and do my DIY yard stuff too please?  ;D
Title: Re: Harvoni Side effects
Post by: sisterbland on May 01, 2015, 08:45:10 pm
KC,
Sometimes it takes me a while to find the posts on what others have experienced at week 6-7 of Harvoni which is where I am (and it looks like you are too).

The stomach side affects have gotten worse for me lately but I also have started having spurts of energy where I have no fatigue, no tiredness that last 2- 4 hours. I am hopeful because it has been at least 6 years since I felt "normal".

I hope you will stay on the forum, I don't know anyone on here but it is very helpful to know I am not alone and that what I'm going through is not unique. The more people sharing their experience, strength and hope the better...

-Ellen
Title: Re: Harvoni Side effects
Post by: mallen on May 02, 2015, 12:15:41 pm
i just finished my 4th week on harvoni,undetectable results yesterday.my side effects are i bruise really easy.I have been sparring and hitting the heavy bag and speed bag.I have to glove up to do heavy bag work or my hands bruise.even hitting the speed bag will make my hands bruise and swell,so i must glove up.I drink a lot of water and try to eat easy to digest food.have hope and get well.
Title: Re: Harvoni Side effects
Post by: Kelley on May 02, 2015, 06:14:00 pm
I am on my 2nd day of treatment. I did the interferon/Ribivarin 12 yrs ago and was unsuccessful. I decided to take my pills in the morning and both days I have experienced what I call medicine head, but did see some indication of brain fog as a side effect. I have some additional tiredness, slight nausea on and off, the significance of the brain fog seems to fluctuate. It is now 10 hrs after my morning dose and I feel clear headed. I am hoping it subsides. Has anyone gotten advice on changing dose time after treatment already started? Don't know if it would work, may still have it.
Title: Re: Harvoni Side effects
Post by: philsky on May 02, 2015, 06:44:27 pm
It's the brain fog that disappears. It took me 2 days of treatment and I felt alive again. Don't anticipate SFX, I think it makes anything worse. I have had ZERO sfx since day one and I'm on day 22 now. This is easy compared to Interferon and ribavirin...no comparison!
Title: Re: Harvoni Side effects
Post by: Kelley on May 02, 2015, 06:47:12 pm
What is SFX?
Title: Re: Harvoni Side effects
Post by: philsky on May 02, 2015, 06:49:21 pm
It's the brain fog that disappears. It took me 2 days of treatment and I felt alive again. Don't anticipate SFX, I think it makes anything worse. I have had ZERO sfx since day one and I'm on day 22 now. This is easy compared to Interferon and ribavirin...no comparison!
Oh by the way, I started at noon and then just took a pill 1/2 hour earlier until I hit 10am. Didn't have any effect on me. I would space it out every 2 days. I think you should get professional advice and not trust some hack like me! By the way, SFX means side effects.
Title: Re: Harvoni Side effects
Post by: Kelley on May 02, 2015, 06:56:58 pm
Great insight and yes I would not change up without dr consent, just how I am. I think I will see how tomorrow goes, hoping to see a difference. It is good and helps to hear the brain fog goes away. Glad to hear you are doing so well.
Title: Re: Harvoni Side effects
Post by: BattleTheBeast on May 02, 2015, 07:26:03 pm
What is SFX?

It's an acronym for side effects
Title: Re: Harvoni Side effects
Post by: concerned father on May 03, 2015, 10:08:18 am
The Harvoni commercial.

https://www.youtube.com/watch?v=fCAa4bs0OoY
Title: Re: Harvoni Side effects
Post by: Kelley on May 03, 2015, 01:39:15 pm
Day 3 and brain fog minimal....tired. So glad to seem to be headed in right direction. Slept well last night, bright this morning then tiredness hit about noon time. I take my pill at 8a.m.
Title: Re: Harvoni Side effects
Post by: Keanu2015 on May 03, 2015, 06:28:13 pm
Hi everyone!
beautiful weather here today in Pa.! I'm closing in on week 11 completion!! I just want to say hello to all my friends :) No side effects to report in weeks now. I think it's almost over for me. I haven't really noticed any skin hair or other physical improvements outside of just being pain free which is fine with me!! Perhaps actually having the drugs in my system are getting in the way of that. I'll be looking for those types of improvements after EOT and hopefully as I reach my SVR 12 date. My doc gave me my EOT blood work script already. I'll be getting tested on my EOT, "last pill" date May 14th. Among these tests I requested the HCV RNA Qualitative test this time. If that shows zero that's huge. A bit risky because it could show detected and then I wouldn't know the count but that is a chance I want to take. Hope you are all feeling well tonight ~K
Title: Re: Harvoni Side effects
Post by: philsky on May 03, 2015, 07:09:00 pm
Hey, I just saw the Harvoni commercial. That should cause a buzz. The price is so high and it will put pressure on everyone to finance this drug. It's like you have a cure for cancer, but......you need to have the means to get well. So much for compassion huh?  On a lighter note, day 23 and just clicking along. Another 5 weeks to go! Stick with it people, this is the best thing going.
Title: Re: Harvoni Side effects
Post by: concerned father on May 04, 2015, 08:55:06 am
I'm from Canada and I saw several newspaper articles saying that several provinces are now providing Harvoni to patents and that they negotiated the price.  I can see that the price will be going down soon.
Title: Re: Harvoni Side effects
Post by: philsky on May 04, 2015, 11:23:50 am
It only makes sense. This is a communicable disease and like measles or polio it should be a social obligation to eradicate it regardless of the cost. There are many folks out there that have Hepc and don't know it. I didn't know I had it until I was screened for it by a smart doctor. I had the virus for years without knowing. I had blood tests all the time but no one suspected HCV. I wonder what the stats are. I am in Ontario and given the track record here for funding life changing therapy, I wouldn't hold my breath for any freebies for meds. Too bad. I have union health benefits and even that was a bit of a hurdle to get approved.
Title: Re: Harvoni Side effects
Post by: pumpkin50 on May 04, 2015, 10:48:54 pm
Hello this is only my 4th post but since Im near the end I thought I would post my experience . I am G type 1A and never been treated with a VL starting at 298,000 and LFTs that have always been at least 4 times the normal. Ive had Hep C for 36 years. I m on a 8 week treatment and next Sunday will be my last pill!!  My VL at 4 weeks was <20 so still detectable but my AST and ALT tests were in the normal range for the 1st time ever..even very low normal!  My baseline prior to tx has always been brain fog and tiredness and i still have that, I was looking most forward to the energy boost I have read about but it hasnt happened...yet!  I use to suffer from insomnia however since starting the Harvoni I have slept well every night and stopped taking my Benadryl for sleep since the day I started Harvoni! I have had no symptoms what so ever including any good ones..except Im sleeping better. I hope its working!!  My boyfriend is also on harvoni a 12 week regimen  as he was treated in past twice with interferon ect.. and he also has not had any side effect, at 4 weeks he tested undected. This is one of the reasons that I hadnt posted very much because we werent having any side effects but i think lack of side effects is also worth posting now that I think about it!  Im so happy to read about those of you testing undetected at EOT,, congratulaions!  I will have my EOT test next Monday.. I hope lack of side effects does not mean lack of results!!  Also I always take my pill at 10:00 at night
Title: Re: Harvoni Side effects
Post by: SunIsOut on May 04, 2015, 10:53:04 pm
Hello this is only my 4th post but since im near the end i thought I would post my experience . I am G type !A and never been treated with a VL starting at 298,000 and LFTs that have always been at least 4 times the normal. Ive had Hep C for 36 years. I m on a 8 week treatment and next Sunday will be my last pill!!  My VL at 4 weeks was <20 so still detectable but my AST and ALT tests were in the normal range for the 1st time ever..even very low normal!  My baseline prior to T=tx has always been brain fog and tiredness and i still have that, I was looking most forward to the energ boost I have read about but it hasnt happened...yet!  I use to suffer from insomnia howver since starting the Harvoni I have slept well every night and stopped taking my Benadryl for sleep since the day I started Harvoni! I have had no symptoms what so ever including any good ones..except Im sleeping better. I hope its working!!  My boyfriend is also on harvoni a 12 week regimen  as he was treated in past twice with interferon ect.. and he also has not had any side effect, at 4 weeks he tested undected. This is one of the reasons that I hadnt posted very much because we werent having any side effects but i think lack of side effects is also worth posting now that I think about it!  Im so happy to read about those of you testing undeteced at EOT,, congratulaions!  I will have my EOT test next Monday.. I hope lack of side effects does not mean lack of results!!  Also I always take my pill at 10;00 at night

Nice post and hoping for good test results for you. I should get my 8 of 12 week labs this week as well. I think I will be more nervous when I do not take Harvoni versus taking it if that could make any sense!
Title: Re: Harvoni Side effects
Post by: pumpkin50 on May 05, 2015, 12:15:00 am
Thank you and I wish you well on your 8 week tests!!!
Title: Re: Harvoni Side effects
Post by: MEG on May 05, 2015, 12:53:28 am
Thanks for sharing your experience, Pumpkin. Indeed, I think that those of us who have side effects are most likely to look for a forum like this and actively post.

My doctor is not a polly-anna by any stretch of the imagination and he said I should have minimal side effects. His nurse practitioner said that during the clinical trials some patients accused him of giving them sugar pills since they felt nothing different!

Yet, there is that 15ish% of us that suffer from one thing or another....

It's all good. I just want us all to SVR.  Good luck with your labs.

My 4 week EOT labs are in 2 weeks. Praying.
Meg.
Title: Re: Harvoni Side effects
Post by: Davidlm1 on May 05, 2015, 08:07:12 am
Good morning all,
Am writing in to share some great news. I am G 1B with  VL of 3.2 million. After my 4 week results was not feeling positive as it was looking like no change but after my 6 week results I am now undetected!  Just unbelievable. I know these are early results but am feeling like we have beaten this disease. Still some effects from the HRvoni but milder-fatigue, brain fog, very slight headaches but that may not be an effect of the drug. Will be testing again in a few weeks but wanted to share the news and say don't give up!  There is hope and focus on the end result if you are having side effects. Worth it to be hep C free. David
Title: Re: Harvoni Side effects
Post by: expat on May 05, 2015, 11:48:36 am
My husband will complete week 16 tomorrow. He hadn't any headache in the past 12 weeks, other than a couple here and there. He usually has headache related to BP fluctuations every day. His fatigue level is about the same as before treatment.
What he has had the last few days, is some sort of respiratory issue. He has got an autonomic disorder, and in the past has had episodes where he has felt he is short of breath. That seems similar to what is going on now.

Has anyone had something similar? He has also been complaining of a stuffed up head and nose for weeks. Anything I read on side effects states mainly headache and fatigue as the most common.
Title: Re: Harvoni Side effects
Post by: CHepCFree on May 05, 2015, 12:37:16 pm
I finished my 12 weeks 8 weeks ago.   I had tinnitus and full head starting week two.  I now still have tinnitus, full head and now experience vertigo.   As for the breathing, almost immediately after completing Harvoni, I had what I am calling an asthma attack. I never had any such issue in the past.  After going to the doctor, I have tentatively been diagnosed with lung damage and also my heart seems to be pounding, not beating fast and bp is not up, it is just seems to be beating hard.  I had no heart issues previously and am getting that checked.  Gilead and the FDA only release information on the most common side effects that are experienced.  Funny how this all started with treatment. Just sharing..............
Title: Re: Harvoni Side effects
Post by: coloradogirl on May 05, 2015, 02:16:07 pm
I am in the 9th week of treatment, having 3 weeks to go. My joints have been aching for the past week. It could be the ligaments and tendons are aching because of a weakening of the muscle system. My muscle mass has defiantly decreased, and I feel flabbier.  I think there are more wrinkles in my skin, too. Damn it!

The tinnitus buzzing has increased, as well. I feel like I'm standing under a high tension electrical tower.
 
I have been religiously exercising to keep my body in shape so I can help my body fight this thing. It has helped me tremendously, because I feel so much better after the workout. On days I take off, I feel tired, queezy, and depressed. Lately, though, I am waking up feeling like arthritis has set in, and am walking like I'm 90 to the bathroom.  I hope that things will improve after treatment, and I can regain some stamina and the joint aches and tinnitus goes away.

It may take time to recover from this round of treatment, but at least it was much kinder to me than the last 2 rounds of Peg/Rib +. The last one involved a study drug, which was an MMP, that actually attacked the collagen in my body. I was so week from that and the Ribavirin caused anemia that I could hardly walk up the stairs. I also had a painful rotator cuff tear and an ankle injury to contend with from that go round. At least I responded to the last one, even though I relapsed after TX ended.
Title: Re: Harvoni Side effects
Post by: pumpkin50 on May 05, 2015, 02:40:45 pm
Just posted last night that I hadnt had any side effects in my 7 weeks of Harvoni but after reading about people having respiratory issues I wonder...I started Harvoni In March and already suffer seasonal allergies but they have been worse since starting with constant nose congestion and even nose pain where I couldnt even touch my nose to blow it as it felt sore and bruised from the inside..sounds strange I know It has not gotten better and Sunday will be my last pill so I will see if it clears up. I live in Cal. and it is allergy season anyways so I attributed it to that...but who knows mabey a side effect!  Also have had achy stiff joints for past year or so which I think is from the Hep C... I'm 49
Title: Re: Harvoni Side effects
Post by: philsky on May 05, 2015, 06:08:18 pm
Gee whizz. I am on day 25 and I really don't feel anything except better. I know a girl that just finished (she's 50) and she has had all kinds of improvement including the carpal tunnel going away and her migraines gone away. My aches and pains that I attributed to arthritis have gone and my skin has improved. I hope these SFX that are being reported are just coincidence, it happens. I had a virus for a while, but even with that, I felt better after 2 days. If I had anything go wonky, I would see a doctor, but I wouldn't blame the Harvoni right off. Stuff happens, right? Like I said before, even some SFX beat the pegetron treatment by a mile. Now, off for a big burger and a beer for a treat! Good luck all, keep on keepin on.
Title: Re: Harvoni Side effects
Post by: Katie on May 05, 2015, 06:28:07 pm
Philsky:  I don't mean to be a downer on a nice spring day, but even if you are feeling better, while you are on treatment, you shouldn't be drinking any alcohol. Glad that your treatment is going so good.  Mine did too and I felt better than I had in years with many more improvements than negative side effects, so it varies with each person.  I actually feel more tired and have waves of vertigo, (which is new) since finishing treatment and clearing the virus. All of my blood work is perfect so I attribute it to the treatment and my system adjusting.  Just taking it slow and allowing to regain my stamina, it's difficult to be patient with the great weather we are having, though.

Everyone be sure to get outside.  Fresh air does wonders for you and keep drinking that water!

Katie
Title: Re: Harvoni Side effects
Post by: bassman55 on May 05, 2015, 06:54:41 pm
OK...I'm new here, I started treatment April 30 2015 ,seven days tomorrow. I gotta say,this has been a breeze! I got the word last week I was OK'd for Harvoni for 12 weeks,Medicare covered and was told a $900 copay,so I said I'm on SS disabilty and have a very meager income,so then I get a call from "Patient Access Network" who I never heard of,and the lady says EVERYTHING IS COVERED,you won't have to pay a cent.WOW!   I thought I'd never get treatment,I've had this I figure 35-40 years(I'm 59) So back to the treatment,I've had maybe a little ringing in my ears? Almost the same as doing a gig with a loud band, I've been fishing,riding my motorcycle,playing music,I look forward to the next pill every nite!  So sorry to hear of others having a bad time treating,Harvoni has not interrupted my life what so ever. The first day I felt like my vision was "more focused" and was bouncing off the walls with energy(in a good way) My biggest issue with Hep C itself has been ITCHING...for like 3-4 years now,I only found out I had Hep C a little over a year ago,lost weight,people asking if I was "alright".I knew something was up,but didn't know what. I cried when I got the word "you have hep c" and also cried last week when that voice said on the phone "you're getting Harvoni at no cost to you!"  I STILL ITCH....I sure hope that will go away...soon.
Title: Re: Harvoni Side effects
Post by: SunIsOut on May 05, 2015, 09:05:24 pm
It is amazing the differences we have on this treatment. My energy is good and I spend time every evening doing outdoor projects and today was working on the sailboat and kayaks with pressure wash, getting ready for wax.  I do have the tinnitus and blurry vision that affects my reading but am still able to function in my busy professional life.

I hope to get the last part of my labs tomorrow or next and will post.  My Hematologist wants me to get the tinnitus checked out. I will wait till end of treatment on the vision as each time I go to the eye doctor and tell them my glasses are not working they just look at me puzzled like there is nothing they can do about it.
Title: Re: Harvoni Side effects
Post by: Martina on May 06, 2015, 09:04:19 am
How do I write on this forum?
Title: Re: Harvoni Side effects
Post by: bassman55 on May 06, 2015, 09:15:45 am
I'm still trying to navigate this also :-\
Title: Re: Harvoni Side effects
Post by: Debula on May 06, 2015, 10:12:39 am
Quote
I STILL ITCH....I sure hope that will go away...soon
Bassman55- I was itching terribly for the past 5-6 years and had no idea why
I tired everything!  I thought it was due to other meds or my thyroid or my hormones or my soap or the food I eat etc..  Nothing helped and as a result I have scars all over from scratching and bleeding and scratching again
I am in my 3rd week of Harvoni and I have to say my skin feels a lot better.  My itching has improved about 80%
Hopefully my liver is healing and that is the reason.  I hope yours goes away too
I would be curious to know
Good Luck with your treatment!
Deb
Title: Re: Harvoni Side effects
Post by: Martina on May 06, 2015, 10:56:04 am
Hello, firstly I'm very excited I found a place where I can speak to others about this because only 3 people in my life know I have Hep c. I am 24 years old, I found out I had Hep C at 20 when I was pregnant with my daughter, i didn't know what to think and honestly I didn't even know what Hep C was. I don't know how I got it, at times I think and think 'maybe I got it this day, or this day' but I accepted the fact I probably will NEVER know and it doesn't matter what matters is I have it and I have to rid of it. When I had my daughter few months later I went to see my doctor, he spoke about the treatment, he told me the possibly side effects and I decided not to go further along and do the treatment, I had a 3 year old toddler and a new born at home, I needed to be 100% me. A year ago I decided I was ready to go into treatment, just thinking the longer this infection is in my body the worse for my body... First request for declined through my insurance l, second request also declined. I didn't know they could do such a thing with such a serious disease, by apparently I was considered too 'healthy' for them to pay for my treatment, my liver is slightly elevated but not enough. Isn't that some BS? My doc recommend me to change my Heath insurance so I did, right when I did he did another request and it was AGAIN declined, because I don't have HIV... At this point I'm hopeless I'm saying to myself I'm going to live with this for the rest of my life, I have to be cautious over the littlest of paper cut around my children, I have to put my tooth brush and razors in the highest closet and I can't share food with them. (I know getting hep c like that is probably very slim but why chance it, like I said I still don't know how I got it because I'm a germ freak, and I'm scared of blood, so w.e blood I got in contact with had to be the littlest amount) anyways my doc tried again gave the insurance the 'she's young with 2 kids, she's got relatively healthy liver which higher a the chance to be cure with one treatment' story. Well on Saturday I got a letter in the mail, saying I was approved for 12 week treatment with Harvoni.. I was NOT expecting to read that, all the letters I got in the mail was 'sorry your request was declined'. Yesterday I started treatment with Harvoni, so I'm on day two. So far so good !! I'm excited to start this journey to rid this and finally put it behind me. Good luck to everyone on treatment and to everyone trying to be on it. Some advice for the people who's insurance keep declining them, try getting under a new insurance ... Worked for me ! I'm looking forward to continue to talk to y'all and get to experience this together !  :)
Title: Re: Harvoni Side effects
Post by: bassman55 on May 06, 2015, 11:50:40 am
Thanx Debula! I wish all the very best to you as well....I can't tell you how irked I was when doctors would tell me itching is not from Hep C! It was all over at one time,but mainly my back itches like crazy,I use lotions and all kinds of stuff,doesn't help. It'll drive you insane. I pray SOON..the treatment makes it go away. I'm ONE WEEK IN today with Harvoni. OH...and if ANYONE can read my test results I have on my profile and tell me the severity of it,let me know. My Doc just say's "You're fine"
Title: Re: Harvoni Side effects
Post by: KimInTheForest on May 06, 2015, 12:26:07 pm
Congratulations on starting treatment yesterday, Martina! :) I too started treatment yesterday - 12 weeks of Harvoni+Ribavirin in my case. So you and I are on the same schedule. I am very optimistic about my chances for finally eliminating this virus from my body. Have had it for more than 40 years. Good luck to you Martina!

Wellness to all,
Kim
Title: Re: Harvoni Side effects
Post by: Debula on May 06, 2015, 03:51:15 pm
Bassman-your results look similar to mine, but I am no expert.  How long did they put you on treatment for?  My doc did not say my liver was fine :( I have to do treatment for 24 weeks

Congratulations to  KimInTheForest & Martina
I hope you have a smooth treatment

Good luck to all
Deb
Title: Re: Harvoni Side effects
Post by: bassman55 on May 06, 2015, 04:01:26 pm
They have me at 12 weeks...
Title: Re: Harvoni Side effects
Post by: bassman55 on May 06, 2015, 04:07:14 pm
my ALT 215
GGT     137
Fibrosis score 0.88
necroinflammat score 0.92
alpha 2-macroglobulins 557

I don't have a clue what these mean? I do know..it ain't good.
Title: Re: Harvoni Side effects
Post by: SunIsOut on May 06, 2015, 04:49:06 pm
My Week 8 labs are in and the results are good.  I am showing a side by side for before treatment in January, week 4 and week 8 after harvoni. My first dose of harvoni was Feb 28th and my last will be around end of May.

(https://farm8.staticflickr.com/7793/17207009060_50c59369b3_z_d.jpg)
Title: Re: Harvoni Side effects
Post by: mario555 on May 06, 2015, 06:47:00 pm
Sunisout. Do they have you on a 24 weeks treatment? Or 12? Are you already finished? Did the insurance cover as many weeks as what your doctor prescribed? Have you ever had treatment before?
I'm just asking because your statistics are close to mine when I started...
Title: Re: Harvoni Side effects
Post by: SunIsOut on May 06, 2015, 07:48:10 pm
Sunisout. Do they have you on a 24 weeks treatment? Or 12? Are you already finished? Did the insurance cover as many weeks as what your doctor prescribed? Have you ever had treatment before?
I'm just asking because your statistics are close to mine when I started...

Hi Mario,
I have never had treatment and they wanted 24 week treatment (doctors) and the insurance approved 12 weeks.  I am undetectable at 8 weeks and go for my 12 week treatment on June 2nd.  I do not have any other ailments and for a 59 year old am extremely active.  I could lose maybe 6-8 pounds but otherwise am in great shape and do not take any medications beyond herbs and harvoni.  My only symptoms and they were prior to Harvoni is tinnitus and blurry vision.  I am setting up an appointment for the tinnitus but will wait a bit on the vision.

How far along are you as I cannot keep up with everyone?
Title: Re: Harvoni Side effects
Post by: mario555 on May 06, 2015, 08:44:49 pm
I finished my 24 weeks treatment 1 week ago. I was UND at week 4. I had EOT blood tests done but no results yet. Going for a check up for VL at 2-6-12 weeks and will post the results as they come out.
I am 59 years old with a F4, 8 millions VL, alt at 225, in otherwise good health.
 I am asking because having gone 24 weeks I would bet that I didn't get cured fully before week 18 to 20. Why do I say that? I had 2 very heavy runs of side effects. One at week 5-6 and one real big one at week 16-17. I really believe I was clearing zillions of little buggers during those weeks! Also, my ALT only got better after 12 weeks.
I am an accountant and we're the type to wear both, suspenders and a belt! If I had been approved for 8, I would have bought 12. If approved for 12, I'd go for 16 or 20... I don't really like odds. If you have 90 % chance to get cured, you are actually 100% cured or 100% not cured!! Not 90%... For me, it has to work! I read about Gilead 2 years ago after the purchase of Pharmaset (inventors of Sovaldi) and I followed closely the development of the pill. It is a "do it or 'maybe' die for me!". I believe more is better with Harvoni. There are already 4 relapses and it can be a crushing news. I find that with this treatment, we should give it our absolute best financially, for some of us the next chance is unsure...
Title: Re: Harvoni Side effects
Post by: mario555 on May 06, 2015, 08:51:18 pm
I forgot. I also dislike it very much when a little pr..k in an insurance company decides over and above the doctor! Some of those insurance guys could barely pass 10th grade biology and they can overrule doctors??
Title: Re: Harvoni Side effects
Post by: SunIsOut on May 06, 2015, 08:55:47 pm
I finished my 24 weeks treatment 1 week ago. I was UND at week 4. I had EOT blood tests done but no results yet. Going for a check up for VL at 2-6-12 weeks and will post the results as they come out.
I am 59 years old with a F4, 8 millions VL, alt at 225, in otherwise good health.
 I am asking because having gone 24 weeks I would bet that I didn't get cured fully before week 18 to 20. Why do I say that? I had 2 very heavy runs of side effects. One at week 5-6 and one real big one at week 16-17. I really believe I was clearing zillions of little buggers during those weeks! Also, my ALT only got better after 12 weeks.
I am an accountant and we're the type to wear both, suspenders and a belt! If I had been approved for 8, I would have bought 12. If approved for 12, I'd go for 16 or 20... I don't really like odds. If you have 90 % chance to get cured, you are actually 100% cured or 100% not cured!! Not 90%... For me, it has to work! I read about Gilead 2 years ago after the purchase of Pharmaset (inventors of Sovaldi) and I followed closely the development of the pill. It is a "do it or 'maybe' die for me!". I believe more is better with Harvoni. There are already 4 relapses and it can be a crushing news. I find that with this treatment, we should give it our absolute best financially, for some of us the next chance is unsure...

I agree that there is a certain anxiety with all of this and the after treatment will probably be the most anxious period. I am actually nervous about not taking the pill and have a Vitamin mentality about it but I will man up when it comes time!  :)
Title: Re: Harvoni Side effects
Post by: Keanu2015 on May 06, 2015, 09:11:42 pm
Hi everyone!, Sunisout and Mario,  I'm right there with you! I have 8 pills left! Lets defeat this thing! Bassman... Your numbers are nearly identical to mine where I started out. You can see my stats underneath. I started a 12 week course on Feb 20. The numbers you have aren't good. The .88 score is showing the amount of damage your liver has already sustained. (mine was .90) We clearly have cirrhosis (scarring of the liver) The necro inflammatory score shows what the active healthy liver cell die-off rate was at. Yours being .92 (mine was at .89 ) That was an actual visual on the disease beating your liver down in real time. I can tell you this much. I was already in pain from the disease (upper right quadrant inside- approx. half way from shoulder to waist- to be more clear). My eyes were almost always burning while I was awake. I even had some pain behind them at times kinda like a migraine but localized behind the eye muscles. Those symptoms are gone. I'm feeling worlds better and am now ready to be done with the pills to start getting healthier and rebuilding my liver. Get a Champion juicer. It's the finest piece of machinery man has ever developed. Drink lots of water and eat yogurt to aid in digestion. DONT TOUCH ALCOHOL. Strawberries and raspberries are good. Kashi cereals are low in iron. Consume less sugars and sodium the best you can. Just really focus on eating a healthy diet. Read all the labels. Even some fruits are LOADED with sugars. That's good sugars but still limit them. I.e. a banana has 14 grams of sugar so that is a delicacy. Eat one like once a week if you love them. I could talk until I'm blue in the face here on tips but I have to run. I'll check back soon. Friends, I hope you are all getting better! Keep fighting the good fight with everything you've got. EXERCISE as much as possible people!! DRINK tons of water!!!!!! Flush the dying disease out it will help with headaches! Eat fresh veggies as soon as they are taken from the earth. The life force energy inside will aid in your goal of attaining your health. ~ K
Title: Re: Harvoni Side effects
Post by: bassman55 on May 07, 2015, 06:30:10 am
Keanu thanks for the info! here I've been boasting no side FX ....yesterday/last nite I had vertigo,everytime I moved I felt like barfing. Starting week 2 today and I'm praying the vertigo doesn't come back.It only lasted about 6 hours, I play music and have some gigs next week
Title: Re: Harvoni Side effects
Post by: Debula on May 07, 2015, 10:41:45 am
Quote
The numbers you have aren't good. The .88 score is showing the amount of damage your liver has already sustained. (mine was .90) We clearly have cirrhosis (scarring of the liver) The necro inflammatory score shows what the active healthy liver cell die-off rate was at. Yours being .92 (mine was at .89 ) That was an actual visual on the disease beating your liver down in real time.

Is that statement correct? (in bold)
The reason I ask is because just a few days I asked what these numbers meant and here is the reply and links from Lynn that is always so helpful.

(My questions was are these numbers a % of my liver that is scarred and dead?

Basically they are comparing to liver biopsy results of F0 through F4 and inflammatory activity of A1, A2 and A3 and using the results of the fibrosure to create a comparison.

Those are not percentages they are just numbers on a chart on a scale on 0 to 1 they could have multiplied bu 10 or 100 so the scale could have been 1 to 1000 and your score would have been 790

http://en.wikipedia.org/wiki/FibroTest

http://www.mayomedicallaboratories.com/test-catalog/Clinical+and+Interpretive/91402


So as far as "Necro-Inflammatory activity" goes,  I found this meaning =that it reflects the degree of necrosis (dead tissue) and inflammation in the liver.

Either way our numbers aren't great.  And I have to admit it is pretty unsettling.  I hope we all get cured and hopefully our liver will get a little better too

Good luck and I wish for everlasting SVR for all of us
Title: Re: Harvoni Side effects
Post by: bassman55 on May 07, 2015, 11:35:13 am
yeah,I'm not real "medically literate" ask me about guitars,basses,motorcycles. But all these numbers as far as my liver scare the hell out of me. I had virtigo big time yesterday,the first side FX  for me that was a "whoooa!!!" kinda thing. I'm day 8 nowand things are good so far today,been playing my bass working on tunes for upcoming gigs,kinda takes my mind off things ;~)
Title: Re: Harvoni Side effects
Post by: Debula on May 07, 2015, 11:37:10 am
yeah,I'm not real "medically literate" ask me about guitars,basses,motorcycles. But all these numbers as far as my liver scare the hell out of me. I had virtigo big time yesterday,the first side FX  for me that was a "whoooa!!!" kinda thing. I'm day 8 nowand things are good so far today,been playing my bass working on tunes for upcoming gigs,kinda takes my mind off things ;~)
Glad you are feeling better bassman!  Hope it is all smooth sailing from now on :)
Make some music!
Title: Re: Harvoni Side effects
Post by: bassman55 on May 07, 2015, 12:17:03 pm
Thanx Debula!  I truely wish you all the best! I feel great today,guess it was just a bump in the road yesterday. I do worry about getting one of these bumps in the road the same day as a gig,that would be a bummer,I have a great reputation for being dependable,and i need the extra $   ;~)
Title: Re: Harvoni Side effects
Post by: dragonslayer on May 07, 2015, 04:03:43 pm
yeah,I'm not real "medically literate" ask me about guitars,basses,motorcycles. But all these numbers as far as my liver scare the hell out of me. I had virtigo big time yesterday,the first side FX  for me that was a "whoooa!!!" kinda thing. I'm day 8 nowand things are good so far today,been playing my bass working on tunes for upcoming gigs,kinda takes my mind off things ;~)

So Bassman, what kind of guitar do you play and bike do you ride?  I used to play a fender strat and ride  a Kawasaki Ninja 650 at the moment.
Title: Re: Harvoni Side effects
Post by: bassman55 on May 07, 2015, 05:23:49 pm
I'm a bassist  all Fender and ride a 2000 Victory V92 Classic Cruiser Hot Rod flames ,phat whitewalls,2 into one black pipes,ran low 13's in the 1/4 mile,not bad for a 700 lb bike ;~)

Here's my "resume'
 Played sax as a kid,around 1970 started playing bass . Played in many bands thru the years,and have played shows with headliners such as Elton John,Moody Blues,Michael McDonald,Kansas,Little River Band,Pure Prarie League,Hootie and The Blowfish,Southside Johnny and The Asbury Jukes,Danny Gatton,Pat Benetar,Tesla,Blue Oyster Cult,LIVE,Gin Blossoms,The Outlaws,Marshall Tucker Band,Duncan Shiek,KIX,Molly Hatchet,10,000 Maniacs,The Vice President of the USA (Gore) Halloween Party,The Kennedy-Shriver house,Planet of The Abts and more.Some bands I worked with Griffin,Zeloso,Top Cat,Blitz,Joint Effort,Attack,Viper,The Pets,Kik*The Dog,Stevie B & The Hungwells,Big Money Grip,The British Walkers. 
Title: Re: Harvoni Side effects
Post by: nadewitt on May 09, 2015, 01:36:14 pm
Hi to all the new people on here and the ones finishing. I haven't been on here in awhile but decided to report that I am exactly half way through my treatment. I only have 12 more weeks to go. My doctor didn't do a new VL test since I tested undetected at week 4, but the test in April showed that my liver enzymes are still elevated. I did have vertigo one day but didn't associate it with treatment. Thanks for posting that others experience this. I have had a headache continually since I started treatment (because of stomach issues I have to limit the amount of water I drink), still having tinnitus and fatigue but so much easier than my other 2 treatments. Had sinus issues for awhile but got a prescription antihistamine to get them under control then tried CTM daily and everything is fine now. I get sores in my mouth about every 2 weeks but they heal pretty fast. Had horrible issues with my GERD until I switched to taking my pill in the morning so I could take a 20mg Omeprozole at the same time. Now the problem is gone. Overall I am doing great.
bassman55 I had horrible itching my last 2 treatments and a liver cancer patient I know recommended "Sensitive Sarna anti-itch lotion" to me. She said it was the only thing that helped her extreme itching. I bought a bottle anticipating the itching to return but have not needed it this time. Maybe it will help you. I thought I would pass on the information. I hope everyone has a great Mother's Day!
Title: Re: Harvoni Side effects
Post by: bassman55 on May 09, 2015, 08:23:11 pm
THANK YOU Nadewitt!!   I'll try anything!  My back and crotch is drivin' me nuts!!!  No pun intended.  My back burns when it's not itching,maybe all scratching I do,albeit "lightly" . It's my biggest complaint with hep c as far as a symptom,I'm praying treatment will make this issue GO AWAY.
Title: Re: Harvoni Side effects
Post by: philsky on May 10, 2015, 08:42:24 pm
I know I sound like a broken record, but, I have felt better each day since day one. I am at day 30 and I never realized my sad condition pre-treatment until things got "normal". It's sad to hear any SFX at all, I really hope that these issues are not related to Harvoni, or, they are signs of better things to come! Cheer up everybody, we just got a new lease on life!
Title: Re: Harvoni Side effects
Post by: bassman55 on May 10, 2015, 08:51:42 pm
It's been good for me other than a few days ago having vertigo for about 6 hours,went to bed and woke up fine....I'm 10 days in now. I little bit of ear ringing
Title: Re: Harvoni Side effects
Post by: jayflowerboy on May 10, 2015, 08:54:48 pm
From Harvoni site:  The most common adverse
reactions (≥10%) were fatigue and headache in subjects treated with 8 , 12 or 24 weeks of HARVONI.
Bucky
Title: Re: Harvoni Side effects
Post by: jayflowerboy on May 10, 2015, 09:06:05 pm
Thanks for the responses.  After reading some of the stories of the side effects from the other drugs I am a bit embarrassed to even mention mine.  They seem trivial in comparison and I am still not sure what is due to the existing liver problems and what is coming from the medication.  I can already feel moments when the headaches and fatigue are not as bad. 

I have my first blood work (14 days) this Friday and am hoping for the best.
Thanks,
Art
Title: Re: Harvoni Side effects
Post by: bassman55 on May 11, 2015, 08:20:01 am
Anyone know if you can take low dose percoset with Harvoni?   I'm on disability for my back and use it as needed for my back which isn't very often. I'm day 11 today on Harvoni.
Title: Re: Harvoni Side effects
Post by: philsky on May 11, 2015, 10:21:00 am
you can take Percocet or any opiod/opiate. I take them along with celebrex with the doctors' blessing. you can't eat grapefruit or some herbal remedies is all. I take all the vitamins and a 80mg aspirin too. This is apparently fine with the Gilead/pharmacy/doctor. I gave full disclosure and the only thing they stressed was to take the pill as close to the same time everyday. Hope this helps.
Title: Re: Harvoni Side effects
Post by: dkr on May 11, 2015, 10:54:51 am
I am new to the forum and started taking Harvoni on October 17th.  Is anyone else taking it and experiencing any side effects?  I am getting daily headaches and fatigue when I first take the pill in the evening.  The fatigue seems to be letting up during the day.  I was experiencing nausea for the first few days but that seems to be better now.

I have 1b and my liver is f3 with a viral load of 4.7 million.  AST 75, ALT 93

Thanks, Art
Title: Re: Harvoni Side effects
Post by: bassman55 on May 11, 2015, 12:08:54 pm
Thanx Philsky!   I also wait 4 hrs after the harvoni,I thought I saw somewhere people were saying take vits/meds/etc. 4 hrs after taking harvoni?
Title: Re: Harvoni Side effects
Post by: Katie on May 11, 2015, 01:46:39 pm
Thanx Philsky!   I also wait 4 hrs after the harvoni,I thought I saw somewhere people were saying take vits/meds/etc. 4 hrs after taking harvoni?

That is only for antacids -the 4 hour wait.  Different time frames for different medications so talk to your doctor on anything you take.  Also no St.John's wort so check all of your supplements and herbal teas..
Title: Re: Harvoni Side effects
Post by: Kathy C on May 11, 2015, 10:48:00 pm
Well I am back to say tomorrow is my last day on Harvoini. I go see my Hep -c Dr. In 2 days. I had my blood work done today so I won't know the results till then.
I am praying for wonderful news.
I will post my results when I get them.
I am happy but scared at the same time. I do not want to relapse.
I have had Hep - C since 1971. I had a transfusion when I had my youngest son in Dec 1971.  This has been my 3rd treatment. This has been the easiest treatment I have had. Prayers for all the people doing a treatment, hang in there. Never ever give up.   Kathy C
Title: Re: Harvoni Side effects
Post by: Katie on May 11, 2015, 11:12:31 pm
Good luck Kathy.  We are all rooting for you and your success!

Katie
Title: Re: Harvoni Side effects
Post by: LJTIV74 on May 12, 2015, 01:46:32 am
I did have some headaches and some fatigue.  Also some itching.  But it was worth it. I have finished my 12 weeks and I feel great!  I think that it is the best thing out here going. Get your life back and stop the worrying. Can you believe it? The cure is finally here! Good luck to anybody just starting your course. Hang in there. See ya!
Title: Re: Harvoni Side effects
Post by: Mugwump on May 12, 2015, 02:38:35 am
That is only for antacids -the 4 hour wait.  Different time frames for different medications so talk to your doctor on anything you take.  Also no St.John's wort so check all of your supplements and herbal teas..
To clarify do not use antacids within 4 hours prior to harvoni or for 4 hours after taking the pill. The reason is the component ledipasvir is metabolized faster in an acid stomach. If you are on over the counter medications for acid reflux or are constantly using antacids please speak to your physician or GI about this.
Title: Re: Harvoni Side effects
Post by: Katie on May 12, 2015, 03:31:15 am
Thanks Mugwump.  Sometimes I get tired of typing the same stuff over and need to remember there are newbies to the forum.   :-\ 
Title: Re: Harvoni Side effects
Post by: Tpropane on May 13, 2015, 04:52:54 am
hi hcv peeps. I'm 16 weeks on Harvoni. This stage of the game it's still F'ired (contraction) for f-ing tired. More weirdly chronic knee/joint pain. Not even the knee I most recently had surgery on 18 months ago, started with that and now has switched to the other. But I'm managing. Cane, hobble, hobble. But have been clear of virus since 2 weeks have until july 15th to go. I am grateful. I think with cirrhosis and every thing the 24 weeks should to the trick. A friend of my daughter's mother did sovaldi and riba but never had a biopsy or a clear picture of the extent of her liver damage. I think she was on for 12 weeks. She Just Relapsed. I can't say enough how important it is to determine the status of your liver just before treatment. Not a year old biopsy. I went from 0-60 in 12 months. Get your status from a  biopsy or fibroscan within a month of starting treatment. It and whether or not you are treatment naive determines length of treatment.
Meanwhile they (Gilead) needs to know about the joint pain side effect. It has moved from one knee to another and hip, back, elbow and shoulder. Not doing a thing but getting through it until EOT. Hoping the joint pain and inflammation goes away. I take 1 advil and 1/2 a vicodin when it gets so bad that i can't walk. Perhaps it only exacerbated in people with pre-existing arthritis. Which I have and had a hip replacement and now I might need a knee or two. Roaming pain is a strange thing. I ice, soak in a jacuzzi and try to not take too many advil. No more than 2 a day. No more than a half of vicodin. It really doesn't kill the pain but I've been working 8 hour days lately...instead of the early part of treatment where I slept in and put my feet up. Best of luck to all of us. 16 weeks! yahoo! F'ired. July 15th is near...
TPropane
Title: Re: Harvoni Side effects
Post by: Nancy K on May 13, 2015, 07:13:15 am
I am about to complete my 8th week on Harvoni.  I had some weird, but mild headaches the first week.  Now I am experiencing joint pain, particularly in my knees, fingers and elbows.  I also have swelling in my fingers that gets better as the day progresses.  I am also experiencing anxiety.   My blood pressure is up and had to increase my BP medication.  My appetite is increased and am really having to watch what I eat.  Has anyone else experienced any of this?

I had blood work after 4 weeks. My results were excellent.  Undetected!  I am on a 12 week course.
Title: Re: Harvoni Side effects
Post by: debham on May 13, 2015, 09:19:49 am
Hi Nancy,
Yes I do have an appetite which is something I haven't had in ages. I too am on BP meds just a diuretic very low does but my BP has dropped a lot. It's gone down as far as 106/60 I'm starting week seven today of my harvoni tx. I have put on a couple of lbs. I know it's because I am eating more carbs than I normally eat. I find myself in the grocery store drooling over donuts. I don't even like donuts. I just tell myself 5 more weeks and I'm hopefully rid of the monkey on my back. This will all be in the past and God willing this drug will work. Good luck.. hope you start feeling better.
Deb
Title: Re: Harvoni Side effects
Post by: SunIsOut on May 13, 2015, 11:09:59 am
I think she was on for 12 weeks. She Just Relapsed.

Was she on Harvoni for 12 weeks and then relapsed?
Title: Re: Harvoni Side effects
Post by: Katie on May 13, 2015, 01:31:04 pm
TPropane:  I have the same question as Sun.  When did she relapse?

Katie
Title: Re: Harvoni Side effects
Post by: Keanu2015 on May 13, 2015, 06:28:31 pm
Hello everyone!

          Just wanted to say hello. Tomorrow morning, about 12 hours from now, I'll take my last pill :) I'm so happy to have finally reached EOT. No real side effects to report atm. I still notice some discomfort in my side when I eat too much red meat or sodium but I have been back to my general diet over the last few weeks and no major issues. I'm feeling really good about my status. I'm praying that my disease is gone for good and for more healing if it in fact, (hopefully), it is. I'll be doing a complete Lab profile including the 'HCV RNA Qualitative' test tomorrow. I'll make sure to check back with my results.
I'd like to take a moment to thank you, Katie, Island girl, Meg, Mario, Sunisout, Lucinda, TTSP, Mugwump, Dragonslayer, KateB, Kaemicha, ALL OF YOU!, who during my tx time have helped me get through this thing. You are all such wonderful souls. I have 2 small boys and am soo busy now that the weather is nice, but I'll continue to try to check in as much as I can. My prayers will always remain here with you, whether I am in media silence or not. God bless you all. ~K
Title: Re: Harvoni Side effects
Post by: TTSP on May 13, 2015, 06:41:51 pm
@keanu2015 Congrats and good luck! 6 behind you and all is well! :)
Title: Re: Harvoni Side effects
Post by: Katie on May 13, 2015, 06:54:37 pm
Keanu:  So happy for you and thanks for your support as well.  Feeling good gives the rejuvenation of spring a whole new meaning!  I'll be looking for your test results and send hugs and kisses to you and your family!

Katie
Title: Re: Harvoni Side effects
Post by: KimInTheForest on May 13, 2015, 08:15:43 pm
Congrats Keanu on being just a nose away from the finish line! Well done. Wishing you the best on your test results.
Title: Re: Harvoni Side effects
Post by: nadewitt on May 14, 2015, 08:52:00 am
Congratulations Keanu! I will be watching for your results. Your comments have really helped me on this journey to health.
Title: Re: Harvoni Side effects
Post by: pumpkin50 on May 14, 2015, 05:51:20 pm
G type 1A  beginning VL 298,000 stage 0 and treatment naive..Hep C for 36 years..Just finished my 8 week Harvoni pill on Sunday and had my EOT blood work on Monday...I was still detected at 4 weeks and Hep nurse just called and said I am still detected at <20 at my EOT lab results...She reassured me that they (Kaiser) have seen alot of this (detected at EOT) and then not detected at 12 weeks...Stating that the sensitivity of the VL test is extremely sensitive and possibly picking up dead virus.  She offered for me to do a repeat VL in 4 weeks from now if I wanted ..I said YES!!!  I'll keep you posted.  I hope you are all doing well and wishing great results to you all!!  She told me that of all the cases where they have seen detected at EOT that ALL have come back undetected at 12weeks...Ill hold on to that!!
Title: Re: Harvoni Side effects
Post by: nadewitt on May 14, 2015, 06:09:06 pm
Pumpkin50 I am so sorry to hear this news and really hope the nurse is right. I will be waiting to hear your 12 week test results. Lots of hugs going your way.
Title: Re: Harvoni Side effects
Post by: Katie on May 14, 2015, 06:49:41 pm
G type 1A  beginning VL 298,000 stage 0 and treatment naive..Hep C for 36 years..Just finished my 8 week Harvoni pill on Sunday and had my EOT blood work on Monday...I was still detected at 4 weeks and Hep nurse just called and said I am still detected at <20 at my EOT lab results...She reassured me that they (Kaiser) have seen alot of this (detected at EOT) and then not detected at 12 weeks...

Pumpkin,  That's what happened with both myself and Dragonslayer.  My doctor tested me at 8 weeks post and I came back at ZERO...with Dragonslayer I believe it was at 11 weeks.  I go in the end of June which will be 16 weeks.  At the time we both got that report, there wasn't any reports showing that and it is unprecedented from previous treatments.  Check these out:

http://hepatitiscnewdrugs.blogspot.com/2015/03/hcv-rna-does-not-always-mean-treatment.html

http://www.hivandhepatitis.com/hcv-basic-science/5160-croi-2015-hcv-viral-load-and-speed-of-decline-do-not-predict-cure-with-interferon-free-therapy

So there is an excellent chance you will clear.  Dragonslayer was on 8 week treatment and I was on 12.

Good luck to you and keep us informed!

Katie
Title: Re: Harvoni Side effects
Post by: pumpkin50 on May 14, 2015, 08:31:53 pm
Thank you for the links and to all for your support!!  I am thinking positive!!  My 12 EOT tests will be Aug 3rd AKA my 50th birthday!!   I will ask them to do the test a few days earlier so that I may be spending my birthday on a beautiful beach somewhere so that if I get bad news that day at least I will be somewhere nice ;)
Title: Re: Harvoni Side effects
Post by: DLedin on May 14, 2015, 10:28:05 pm
On Monday I went in to have my blood drawn for my 3-months after end of treatment test.

Today my doctor called. He told me that the test results came back and that I am cured. I feel so blessed to have come through this bad dream and now I look forward to living without the cloud of hep C hanging over me. I was extremely fortunate that I did not suffer much damage.

I thank God for this blessing and I pray for those who are still struggling through their treatments, that they may come through the other side whole again.

Thank you for this forum. I have not posted much at all but I have followed the discussions here and I'm happy to report the greatest side effect of them all: being cured. I wish and pray for the same for all of you.

-Doug
Title: Re: Harvoni Side effects
Post by: Katie on May 14, 2015, 11:55:40 pm
Another warrior beats the dragon!  Congratulations Doug.

If you have time, could you please post your info on http://forums.hepmag.com/index.php?topic=2665.new;topicseen#new

Charly8 started this thread to compile our forum's data on post treatment tests for those cured and those who relapse.  The more that post the better the information will be.

Thanks and have a healthy, wonderful life!

Katie
Title: Re: Harvoni Side effects
Post by: DLedin on May 15, 2015, 09:20:16 am
If you have time, could you please post your info on http://forums.hepmag.com/index.php?topic=2665.new;topicseen#new
Done.
Title: Re: Harvoni Side effects
Post by: philsky on May 16, 2015, 11:39:05 am
that is great news. I hear this all the time. My EOT is July 11 and my finals are in Sept. I know I'm cured just by the way I feel and the way my other problems are going away. My doctor doesn't keep me updated. She just said that in Sept. I will meet with her and then I get all the news at once. She's a busy gal, quite in demand.
Title: Re: Harvoni Side effects
Post by: chevy333 on May 18, 2015, 08:30:49 am
hello, im new, so im on my 2nd bottle of harvoni, please tell me im not the only one that has a bad headache every fricky day, to where  its kinda taken over my life right now, i take my harvoni at 730 pm and i wake up with headeache all day, i started off with 1000mg tyenol, and they stop working so go well, now i switched to excedrin xtra strength, works better, but these headaches  i cant take any more, i go see my dr on 26th, i dont know what to do, i dont want to stop the harvoni,,,,,,,,,,,terry
Title: Re: Harvoni Side effects
Post by: debham on May 18, 2015, 08:38:56 am
Terry Are you drinking at least 64 ounces of water a day? That will help with side effects.
Deb
Title: Re: Harvoni Side effects
Post by: chevy333 on May 18, 2015, 11:18:48 am
ok i will try anything, im gonna drink alot of water today, thanks, i really would like to hear about other people like me if they are out there, thanks deb
Title: Re: Harvoni Side effects
Post by: chevy333 on May 18, 2015, 12:03:11 pm
 also i would like to ask if anyone is being treated for bad headaches every day with a perscription   percocet 5 mg/375 acetaminophen,   thanks   terry
Title: Re: Harvoni Side effects
Post by: dogdave on May 18, 2015, 12:28:46 pm
chevy333

Be careful with the acetaminophen, 1000 mg is half a days dose, it will case liver damage.  I am on my 8th week now.  I had headaches in the beginning, but they went away.  I choose ibuprofen and had 800 mg in one pop.  That can cause bleeding so that is not recommended.  Talk to your liver doc about it or call a Glead nurse and see if they can help with suggestions.  Keep an eye to the bigger picture and good luck.

David
Title: Re: Harvoni Side effects
Post by: TTSP on May 18, 2015, 12:42:09 pm
@chevy333 I only have 2 pills to go. Not knowing the details of your situation, no one can really explain too much. Like deb said lots of water helps. I started out thinking that I would not be able to handle too. Severe headaches, and dizziness. It all went away after a few weeks. Well by went away, I mean it became more easy to take.

I still have the symptoms, but I also have Meniers which has the same symptoms. Lots of water is the key. I also know from my experience that it's not a good idea to take a lot of ibuprofen. There are differing opinions on what can or cannot be taken. I have made it nearly 12 weeks without any pain medication or indigestion medication.

I realize that some may not be able to do that, so best wishes and do what you can. Hang in there. This stuff works!  8)
Title: Re: Harvoni Side effects
Post by: SIXFOOTFOUR on May 18, 2015, 01:27:16 pm
Chewy333

The only real side effects Ive had on harvoni are some headaches and light nausea both of these are always much less or go away for me if I increase the H2O, just water not juice, soda , coffee etc plain water. Ive taken to what a personal trainer told me a few years ago and I could not push my self to do at least 1/2 your body weight in OZ daily. Im 210 lbs and drink between 100-120 oz a day now . What helps the most is when I take the Harvoni be sure to drink what you can, Ill do a 12 oz glass withthe pill and within an hour another 12oz I think the more water as the pill is dissolving the less neausea and headaches   

acetaminophen is very bad for the liver, 2 grams (2000 mg in the recccommended max daily dose from what ive been told, used to be 4 grams a day.) Im a chronic pain patient as well and used Percocet, Vicodin , norco or lorcet for 30 + years and my Pain management MD took me off all of those 4 yr ago when the new limits came out and also my liver tests were worse s ive been switched to a lower dose of Dilaudid because it does not have any acetaminophen,

Stick through it
Title: Re: Harvoni Side effects
Post by: KimInTheForest on May 18, 2015, 01:44:19 pm
What helps the most is when I take the Harvoni be sure to drink what you can, Ill do a 12 oz glass withthe pill and within an hour another 12oz I think the more water as the pill is dissolving the less neausea and headaches

I was doing this too initially, sixfootfour. But then I began to worry about all the water around pill-time diluting my stomach acid. Stomach acid is crucial for maximum absorption of the Harvoni (specifically, the ledipasvir in harvoni needs an acid environment to do its thing). So i am now going light on the water (and any acid-reducing foods like milk, which temporarily reduces stomach acid) until 4 hours after harvoni. Not sure if this is necessary. But it is my new approach.

I may change it again as time goes on. I am just ending Week 2 of 12 weeks Harvoni+Riba.

Good luck to all on this road :)
kim
Title: Re: Harvoni Side effects
Post by: SIXFOOTFOUR on May 18, 2015, 01:58:09 pm
Ive had peptic ulcers for 30 plus years and use a lot of antacids so I was also worried. I follow directions and dont use them 4hr before or 4hr after. But I called Gilaed Support path and the nurse there said water should not effect the ledipasvir into the system due to low acid environment from the water
Title: Re: Harvoni Side effects
Post by: KimInTheForest on May 18, 2015, 02:10:22 pm
very glad to hear that, sixfootfour, about nurse saying water not a problem with the harvoni and acid dilution, etc. I will go back to more morning water drinking. it does make a difference in keeping the side effects minimal.

thanks for info :)
kim
Title: Re: Harvoni Side effects
Post by: TTSP on May 18, 2015, 04:42:40 pm
See what I mean about differing opinions? We have a 3a, a 1a, and a 3 who all have different takes on this. This doesn't even take into consideration a whole lot of other info, such as personal habits, age, lifestyle, etc.

Several people have compained about how difficult it is to navigate this info. This is why I don't spend much time on here. The search filter is worthless to me. Sure it will bring up every comment about 1b for me, is does not mean that every comment was posted by someone with 1b. And also everything else that I mentioned in my 1st paragraph.

The best solution I have come up with is to do as much research as I can on my own, and grill my doctor, and Gilead until they can't stand hearing from you.

There is no doubt in my mind that this stuff works as long as I don't keep trying to tweak it. One other thing I forgot to mention is, time of day the pill is taken. I know everyone has a different schedule, I'm retired and I take mine a 6:30 am. So when I get worn down, I take it easy. I get quite a lot done during the day now. (I did not when I first started)

Best wishes to all.  8)
Title: Re: Harvoni Side effects
Post by: TTSP on May 18, 2015, 04:45:34 pm
My first line should read 3a, 2, 1a's, and 2, 1b's.    :-[ oops
Title: Re: Harvoni Side effects
Post by: chevy333 on May 18, 2015, 05:10:13 pm
ok i just got off the phone with my liver  dr and they said they have 170 people on harvoni and im the only one they know of with severe headaches everyday, so i told her the tyenol 500mg tab x2 not working to good even with 2000mg all day so she suggested me to take 800mg motrin or ibuprohin  same thing anr dont take tyenol no more, so im gonna try this and more water,l  hope this works, i have my doubts, im kinda in a negitve state of mine after having bad headaches for 40 days, ever since i started      looking for hope,,,,,,,,,,,,terry
Title: Re: Harvoni Side effects
Post by: nadewitt on May 18, 2015, 05:44:04 pm
ok i just got off the phone with my liver  dr and they said they have 170 people on harvoni and im the only one they know of with severe headaches everyday, so i told her the tyenol 500mg tab x2 not working to good even with 2000mg all day so she suggested me to take 800mg motrin or ibuprohin  same thing anr dont take tyenol no more, so im gonna try this and more water,l  hope this works, i have my doubts, im kinda in a negitve state of mine after having bad headaches for 40 days, ever since i started      looking for hope,,,,,,,,,,,,terry

You are not the only one. I have been on Harvoni for 13 weeks and have had a severe headache every single day. The headache is there all the time but the pain is horrible when I wake up and spikes when I am around loud noise or bright lights. This is not fun but I don't feel like I am dying like I did during previous treatments. I want to help my liver (I have cirrhosis) so I really limit taking pain medicine. I just don't want you to feel that you are the only one going through this. How long is your treatment? I am on the 24 week regimen. I am marking the days off on a calendar so I can see the light at the end of the tunnel.
Title: Re: Harvoni Side effects
Post by: chevy333 on May 18, 2015, 07:40:34 pm
hey nade thanks for your reply, im on 12 week treatment, im about 40 days in, on my second bottle of harvoni, so i really hope i can put up with the headaches to have a good liver again with no hep c virus, im 58, 2 time cancer survivor, so im not gonna let this whip me, i stoppped taking tynenol and went to 800mg motrin per dr order, we will see if that makes a big diff
Title: Re: Harvoni Side effects
Post by: joelyzabeth on May 19, 2015, 10:29:28 am
Good Morning Everyone!  :D

I am new to the forum. I am on day 9 of Harvoni.

After day 2 experienced severe diarrhea which my doctor informed me of an anti-diarrhea medication to take which seems to be working. In conjunction with body aches which my doctor figured it was my Fibromyalgia. Has anyone else experienced body aches?
 
Haven't had any headaches but I already suffer from bad headaches so I wouldn't know if it was the Harvoni or not.

Have been extremely fatigued though does this last throughout the treatment period or will it eventually subside?

Another issue I've been experiencing is a minimal appetite. I usually have a healthy appetite but lately I'm not very hungry. Is this an issue with the Harvoni as well?

Please advise on any questions that I have,  your input is very valuable.

Thank you.
Title: Re: Harvoni Side effects
Post by: philsky on May 19, 2015, 10:43:49 am
I am on day 39 and I feel great. Appetite is up and clear head. I have had a headache or two, but this is just normal for me. Nothing out of the ordinary. I take my pill at noon, sometimes with an empty stomach, it doesn't matter. I don't get blood results, but like I said earlier, I know this is working. You got to stick with it and not imagine any symptoms. I really think that the past TX with Pegysis scares the crap of you. It did to me. I was worried about SFX from Harvoni, but my doc assured me I would be OK and I bought it. It was true! Stay the course and get better.
Title: Re: Harvoni Side effects
Post by: chevy333 on May 19, 2015, 12:09:08 pm
hey nade thanks for your reply, im on 12 week treatment, im about 40 days in, on my second bottle of harvoni, so i really hope i can put up with the headaches to have a good liver again with no hep c virus, im 58, 2 time cancer survivor, so im not gonna let this whip me, i stoppped taking tynenol and went to 800mg motrin per dr order, we will see if that makes a big diff
   next day after changing meds to 800mg motrin per liver dr order, i feel better, thank god ,the ibuproin does work better than the 1000 mg tynenol for my headaches, she said you can take 800mg every6  hr if needed, so far been lasting more than 6  hrs.   i will keep you informed on my status
Title: Re: Harvoni Side effects
Post by: philsky on May 19, 2015, 12:34:32 pm
More good news.
Title: Re: Harvoni Side effects
Post by: bassman55 on May 21, 2015, 08:19:27 am
Morning! My question isn't about Harvoni side fx...I've had itching for a few years now,and I'm reading it's a symptom of cirrosis,has anyone had itching and the Harvoni treatment make it go away? I'm bummed thinking ,OK...I get cleared on the Hep C from the Harvoni (which is a beautiful thing) but my itching stays with me the rest of my life from a damaged liver? I'm 18 days into my 12 weeks of Harvoni
Title: Re: Harvoni Side effects
Post by: philsky on May 21, 2015, 09:10:18 am
I can't imagine it getting worse. The liver has a unique ability to regenerate itself. Specially if it's not under attack constantly! I think that all of us will be healthier in time, some faster than others. I am confident that a year from now, I will look back at all the nagging problems I had and move on. I am around day 40 now, not even counting anymore and things just get better. Around Day 19 is when I started to notice my arthritis like pain in my hand and shoulder abating. I did not know that itching was a symptom of cirrhosis (sic). I'm gonna look that one up. Stay the course, full steam ahead!!!
Title: Re: Harvoni Side effects
Post by: bassman55 on May 21, 2015, 09:47:14 am
Yeah,I looked into my itching issue for the last couple years,and kept reading 15-20% of folks with Hep C get itching,and ALL the doctors I've been to say NO. Then I searched symptoms of cirrosis and there it is "itching". Say's the liver can't clean all the toxins out like it used to,so the toxins get into the blood and make you itch. Makes sense I guess,I've tried all the allergy meds,even prescription grade meds,it's not allergies,I'm convinced of that,my liver is "A3-severe" in my fibrosure test. It's like torture....all the itching.
Title: Re: Harvoni Side effects
Post by: Karen1124 on May 21, 2015, 10:34:38 am
Hi bassman55,
It sounds like your system is extremely toxic I think I'd start with the castor oil pack, coffee enemas and jump on trampoline and do some dry skin brushing before you shower you can find all this on the computer. I didn't do castor oil pack while I was on Harvoni. you could ask your nurse or your doctor if its OK. Also soaking in epson salt is really good! Life is good!!    Karen
Title: Re: Harvoni Side effects
Post by: bassman55 on May 21, 2015, 10:38:46 am
Can I get french vanilla with my coffee enema?  Are you kidding me???  LOL  I do know someone with a trampoline!
Title: Re: Harvoni Side effects
Post by: Karen1124 on May 21, 2015, 10:41:56 am
BTW my doctor told me that sugar is metabolized exactly like alcohol lay off the sugar and drink lots of water 20 grams of sugar per day is what my doctor told me! and all his accounts that means fruits and honey! I could tell in 2 weeks that I was a lot less toxic by staying on that diet! Life is good!   Karen
Title: Re: Harvoni Side effects
Post by: Karen1124 on May 21, 2015, 10:46:47 am
No baseman no French Vanilla only organic!! Google coffee enema and you'll find the recipe! you just need a small trampoline I only paid $20 for mine and you jump on it for 3 or 4 minutes before you get in the shower each day and you also do the dry skin brushing before you get in the shower you'll find that also on the computer!
Life is good!  Karen
Title: Re: Harvoni Side effects
Post by: Debula on May 21, 2015, 11:50:09 am
Bassman I have been going slowly insane with the itching for about 5 years now and I tired EVERYTHING and nothing helped.  I did have the "feeling" all along that it was "dirty blood" at least that is how I felt about it.  And as it turns out that is exactly what it was..
About 2 weeks into Harvoni the itching pretty much stopped and now into my 5thw eek  my skin even looks better.  I have been drinking a lot of water and have been eating more fruit.  I don't know if it is the Harvoni making my liver work better, or the amount of water or the fruit but something is working and I finally have some relief.  I hope you will experience the same once your body starts getting rid of the toxins.   Good luck and I really hope you get some relief because I KNOW how awful it feels
Title: Re: Harvoni Side effects
Post by: bassman55 on May 21, 2015, 01:22:10 pm
LOL Karen I thought you were kidding....too funny!
Title: Re: Harvoni Side effects
Post by: bassman55 on May 21, 2015, 01:31:24 pm
Debula,Thanx!  I keep hoping I'll wake up and "the itch" is gone. I'm 17 or 18 days in treatment,sure hope it rids me of the itch,it all started 2011 using a back scratcher a little, it gradually got worse, I only found out about my diagnosis a little more than a year ago,I knew something wasn't right since 2011.I'm on SS disability for my back and all I have is medicare and thought they'll never pay for treatment,but they are and a organization called Patient Access Network picked up the $900 copay!  So I'm paying $ 0.00  UNREAL! I truly feel blessed things have moved so fast for me,made me wonder about the "worst first" being treated and that maybe my liver is in worse shape than I'd thought?
Title: Re: Harvoni Side effects
Post by: Katie on May 21, 2015, 01:36:29 pm
Hi Bassman,  Just so you know, my doctor would ask me at every check up if I was experiencing itching, so it is definitely a HepC issue.  I had 2 tiny spots that would itch.  One on the back of my neck and one in the middle of my back, but that was it and since I have finished treatment and am clear, that problem is gone.

Sorry you are suffering as that would be miserable. and I bet anything it subsides once your liver is up and running right and doing it's job.  Good luck with that and keep us posted!

Katie
Title: Re: Harvoni Side effects
Post by: Debula on May 21, 2015, 01:45:13 pm
Debula,Thanx!  I keep hoping I'll wake up and "the itch" is gone. I'm 17 or 18 days in treatment,sure hope it rids me of the itch,it all started 2011 using a back scratcher a little, it gradually got worse, I only found out about my diagnosis a little more than a year ago,I knew something wasn't right since 2011.I'm on SS disability for my back and all I have is medicare and thought they'll never pay for treatment,but they are and a organization called Patient Access Network picked up the $900 copay!  So I'm paying $ 0.00  UNREAL! I truly feel blessed things have moved so fast for me,made me wonder about the "worst first" being treated and that maybe my liver is in worse shape than I'd thought?
According to your stats it appears that your liver condition is a lot like mine and my insurance authorized me right away which is good for us but yeah a little scary to think that our livers are in bad shape. :(  When I first starting coming to this site ( a couple of weeks before I got approved for Harvoni) I noticed a thread about itching and honestly I got so excited that I finally found people that understood.  I was excited that it might go away  (I think I was more excited about that than anything!)  I really hope yours stops soon.   I have scars all over my arms legs from scratching and bleeding and scratching...so I completely understand how you feel.    Hang in there and I hope that it goes away and stays away
Deb
Title: Re: Harvoni Side effects ITCHING
Post by: bassman55 on May 21, 2015, 02:50:21 pm
From a website:

An estimated 15 to 20 percent of people with chronic Hepatitis C experience the symptom of itching. Known clinically as pruritus, itching refers to the unpleasant sensation that causes the need to scratch. Whether localized to a specific region of the body, spread all over or relegated to the internal organs, pruritus is often guilty of plaguing those whose Hepatitis C has advanced to cirrhosis. Fortunately, there are many ways to reduce this potentially maddening symptom.

More About Pruritus
Pruritus and pain are closely related sensations, since the same nerves transmit the signals of discomfort to the brain. Known as the itch-scratch cycle, an area of skin that is scratched often becomes even itchier, leading to more scratching.

Experts believe pruritus in people with liver disease is due to the accumulation of poisons that have not been effectively filtered by a damaged liver. When liver damage impedes the flow of bile through the liver, bile acids and bilirubin get backed up in the blood. Besides causing jaundice (yellowing of the skin and eyes), high bilirubin levels often cause pruritus.
Title: Re: Harvoni Side effects ITCHING
Post by: Debula on May 21, 2015, 04:47:25 pm
From a website:

An estimated 15 to 20 percent of people with chronic Hepatitis C experience the symptom of itching. Known clinically as pruritus, itching refers to the unpleasant sensation that causes the need to scratch. Whether localized to a specific region of the body, spread all over or relegated to the internal organs, pruritus is often guilty of plaguing those whose Hepatitis C has advanced to cirrhosis. Fortunately, there are many ways to reduce this potentially maddening symptom.

More About Pruritus
Pruritus and pain are closely related sensations, since the same nerves transmit the signals of discomfort to the brain. Known as the itch-scratch cycle, an area of skin that is scratched often becomes even itchier, leading to more scratching.

Experts believe pruritus in people with liver disease is due to the accumulation of poisons that have not been effectively filtered by a damaged liver. When liver damage impedes the flow of bile through the liver, bile acids and bilirubin get backed up in the blood. Besides causing jaundice (yellowing of the skin and eyes), high bilirubin levels often cause pruritus.
Yup and I guess I sensed that my blood was toxic or something.  My doctor GP never really associated it with the HepC which worries me a bit because he should have known that.  Anyway.. Hopefully your liver will start doing a better job and the itching will get better.  Because itching SUCKS!! :(
Title: Re: Harvoni Side effects
Post by: bassman55 on May 21, 2015, 06:35:41 pm
yeah,the big thing that bothers me is EVERY doctor I've been to say's NO,it's not the hep c.... Grrr!
Title: Re: Harvoni Side effects
Post by: philsky on May 21, 2015, 09:45:58 pm
I had so called liver spots that look like moles. not a lot, just a few. They have subsided and no longer "scale". Oh yeah, what a doctor that didn't know I had HCV called keratosis or something. I had psoriasis or something like it on my scalp, it has taken a while for me to stop using selenium in my shampoo. I can use what "normal" people use now without dandruff etc. I'm telling you, there are definitely tangible benefits the longer you go into treatment with this stuff. It's like being brand new again. Funny how things creep up on you and you think it's just old age etc.....I can't wait for a year from now to see what kind of body I have to live in!
Title: Re: Harvoni Side effects
Post by: joelyzabeth on May 22, 2015, 01:10:30 am


Re: Harvoni Side effects
« Reply #2118 on: May 19, 2015, 10:29:28 AM »
Quote
Good Morning Evening everyone   :D

I am new to the forum. I am on day 12 of Harvoni.

After day 2 I experienced severe diarrhea my doctor prescribrd me an anti-diarrhea medication to take which worked.

 I also have body aches which my doctor figured is a Fibromyalgia Flare up, which I haven't had for months prior to tx. Has anyone else experienced body aches? How lomg fof they last, if so.
 
Haven't had any headaches but I already suffer from bad headaches so I wouldn't know if it was the Harvoni or not.

Have been extremely fatigued, does this last throughout the treatment period or will it eventually subside?

Another issue I've been experiencing is a minimal appetite. I usually have a healthy appetite but lately I'm not very hungry. Is this an issue with the Harvoni as well? I know it's not my HIV meds as I didn't have this issue before Harvoni.

Please advise on any questions that I have,  your input is very valuable.
Title: Re: Harvoni Side effects
Post by: KimInTheForest on May 22, 2015, 01:25:18 am
Hi joelyzabeth, and welcome to the forums! :)

I am on Day 17 of Harvoni+Ribavirin. I have not had much problems with sides so far - all minor and manageable. But I am experiencing major appetite suppression while on treatment and have been losing weight because of it (and I don't have any weight to lose). Some of my fave foods that used to be my go-to foods when I need to put weight back on do not appeal at all right now. Pasta, for example. So I have had to become a lot more diligent about eating whatever I can (so long as it is healthy, no junk food) whenever I can get it down.

Other than that, my experience has been pretty positive so far. I have actually had an increase in energy, mood, & mental functioning. I thought it was the Harvoni. But it could just be ME with the virus getting knocked down so quickly. These new drugs work remarkably quickly. My starting viral load was nearly 9 million. And after just 7 days it was down to 130! Wow! And my liver enzymes are back in the normal range for the first time in 20 years. Lots of people are reporting results like this. This is typical for Harvoni.

Have you received any results of your labs yet, joelyzabeth? it is very encouraging to see those numbers falling and makes any side effects seem worth it.

wishing you the best on your journey, with cure at end for you. :)

kim

Title: Re: Harvoni Side effects
Post by: smschier on May 22, 2015, 10:57:42 am
I am new here.  I've had Hep C for probably 20 years.  I take too much Tylenol and still like to drink so my liver is not too good.  Last fall, my viral load was 8 million.  It is actually down to 6 million currently.  I live in Canada and Pharmacare has just recently said they will pay for Harvoni which is great!!  I start next week, a 12 week dose.  I already have headaches all the time and already feel completely tired and exhausted all the time so hoping I won't feel any different than I already do.  Just wondering when people start to notice an increase in energy and how bad the side effects are???  I'm hoping this won't affect my job.  I have read some people have appetite suppression from it.  That I would love!!   ;)
Thank you, Suzie
Title: Re: Harvoni Side effects
Post by: philsky on May 22, 2015, 11:09:09 am
In earlier posts, I have always held firm that I noticed improvement by day 2. I felt new energy and a clear head. I am 1A genome. I actually look forward to taking my pill! I am in Canada too and my insurance was slow, but delivered in the end. I think I am more than day 40. I've stopped counting. No SFX at all. Only good ones! Stick with it and for pete's sake, don't over analyze or imagine that you will have any SFX, you will be better for it. I think that some SFX are just the new normal of having no virus in your system and that is quite a shock after years of being "sick". Good luck and just go about your day like it's a new beginning. Be positive and things will be better at the end.
Title: Re: Harvoni Side effects
Post by: SIXFOOTFOUR on May 22, 2015, 11:50:49 am
Hello and Welcome "smschier"

Congratulations on Harvoni approval!  The small amount of people that report side effects are for the most part minimal, I dont think Ive personally seen a post that the person could not work due to side effects. In fact I see more about no sx or minimal sx like mild headache or nausea.

Foe me the sx have been very mild and over all I feel better in general since about 3-5 days into tx. Im 6 days from completing the 12 wk and it was very easy. Dont talk your self into side effects or look for them. Take the daily pill at about the same times daily and during the day be sure to stay hydrated, water seems to be the best thing to help minimize any side effects.

Good luck with tx and be greatfull your not doing it with the old drugs (peg, riba, interferon) those had side effects and overall much lower success rates
Title: Re: Harvoni Side effects
Post by: Katie on May 22, 2015, 04:07:56 pm
Hi Suzie, Welcome to the forum.  You'll find lots of information and support snd some great people who know exactly what you have and are going through.

I am post treatment about 11 weeks and miss my pill.  I felt better on Harvoni than I had in years and better actually than I do now.  I came back Undetected at 8 weeks post treatment and have another test at the end of June (16 weeks)  I actually was still detected at the end of treatment so don't fret if you stay detected throughout treatment as strong responders are known to clear even after they complete the treatment.  So as long as your viral load decreases significantly, your chances of clearing this monster is very good.

My advice to you is to stop any alcohol and Tylenol use (unless the doctor OK's it) as you don't want to put any undue stress on your already compromised liver during treatment.  Drink Lots of water (about 1/2 gallon a day) and exercise to your ability and eat healthy. Read the handout to see other restrictions with Harvoni and take your pill the same time each and every day.

Good luck to you and know you are not alone!

Katie
Title: Re: Harvoni Side effects
Post by: kaemicha on May 24, 2015, 06:15:45 pm
BUMP..to say that I did go to France while starting my first week of my 3rd month of Harvoni, and I've never been more frightened and sick .. well in a long time.
While I am happy that some are able to travel to other countries I just wanted to say that it didn't work for me but I have other health issues and that could have played into it.

The entire time I was there, most of the time in my room with hotel staff trying to call a doctor for me (they eventually got one to my room) all I could think about was being home and seeing a doctor who spoke English.

I would recommend traveling in the states where there is no language barrier but then again that kind of trip would have made me sick, also.

This forum helped me a lot and I'm just adding my .02 for those who might consider travel, if you have other things going on. It was very hard for me..but a great learning experience so not all was lost.

Thank you for hearing me out. Only a few more days to go and I'll be off of Harvoni.
Title: Re: Harvoni Side effects
Post by: Mugwump on May 24, 2015, 08:37:09 pm
Quote
BUMP..to say that I did go to France while starting my first week of my 3rd month of Harvoni, and I've never been more frightened and sick .. well in a long time.
While I am happy that some are able to travel to other countries I just wanted to say that it didn't work for me but I have other health issues and that could have played into it.

I considered a long trip but am very glad I didn't. Even the short trip I did in January wound up messing up the timing of taking one pill by eight hours. And the thought of lugging around a months worth of pills at close a thousand bucks a pop made me hesitate to say the least!

For those who do miss the timing of a single dose it is not a serious issue. But it is not a good thing at all and if you lose your pill(s) or accidentally double dose because of jet lag or some other reason the consequences may be a trouble. I will not discuss the side effects of a double dose I will only say that one should immediately see a qualified physician who can communicate with Gilead and the right people is what is recommended on the big sheet.

So for those who are considering a long trip take care and carefully consider all things that can upset the apple cart please!

Kind regards kaemicha and here is my sincere wish that  you and every one is clear at EOT and reaches SVR!

My toes and fingers are hurting like hell because I have them crossed that in the next few days I get the all clear...

I should know by next Friday at the latest, so it is pins and needles time, but fortunately the needle should not have to be used on me again till August if I am clear at EOT. But I still have a standing monthly LP so I guess the vampires will get their due regardless LOL.
Luckily I have really good veins and have not had any issues with infiltration and a huge bruise like I did when a scared tech over shot the mark back in fall 1993 when the rec was for the first draw for HCV RNA confirmation and she was nervous as our cat going to the vet and so was I.

Things like unfamiliar techs, doctors that are not up to speed with HCV and all sorts of other issues can crop up if you travel while on Harvoni, so careful planning and consideration of these factors is a very good idea indeed.

Regards
eric
Title: Re: Harvoni Side effects
Post by: Lynn K on May 24, 2015, 09:58:42 pm
I went to Italy for a week I had just passed the 12 week point of my 24 weeks. I would just say know yourself and your limitations.

If you feel fine treatment is not a reason to stop living life in my thinking. But if you find day to day is a struggle in general you might consider putting off things that would make your life more difficult.

I am fortunate and very resilient but I know not everyone feels that way.

Just use your best judgement in these situations but I still believe if you can you should try to live life
Title: Re: Harvoni Side effects
Post by: Mugwump on May 25, 2015, 02:30:08 am
I went to Italy for a week I had just passed the 12 week point of my 24 weeks. I would just say know yourself and your limitations.

If you feel fine treatment is not a reason to stop living life in my thinking. But if you find day to day is a struggle in general you might consider putting off things that would make your life more difficult.

I am fortunate and very resilient but I know not everyone feels that way.

Just use your best judgement in these situations but I still believe if you can you should try to live life
Lynn you jump out of perfectly good airplanes, I brave rivers in a pontoon boat that only the fool hardy dare to run or wade! But lets face it, in both these fields of interest planning things does help reduce the risks. My pfd condition is as important as your parachute and fortunately I have not had to pull my rip cord yet, which is something I am certain you do when you jump. LOL

Though my fire lighting gear that I carry has had to be used on occasion when I have gone for a serious hat float a few times during the fall rainbow season BRRR. Twelve years ago on one river in Northern BC it took almost an hour shaking like a leaf to get the fire going but at least I did not have to use my inflation valve and then walk out from the drift cause the rest of the drift was too dangerous without a pfd. A buddy of mine almost bought it on the Horsefly when he went over a class 4 stretch and got dumped by a log and then had to dry out and walk out without his 'toon boat!

So by all means do experience life to the fullest while on treatment and do not think of oneself as a "patient", but plan ahead more than usual if you are on this med IMO. The side effects should not be a hindrance but I certainly would not want to have something mess with the treatment regime like a lack of pills during treatment or a serious dosage mistake.

Cheers
Eric
Title: Re: Harvoni Side effects
Post by: Lynn K on May 25, 2015, 02:44:27 am
Absolutely I could not agree more.

I guess you and I always think like scouts and prepare as needed for our adventures so for us it is second nature.

But for others that is a whole different way of thinking yes definately consider how you will handle your meds is an important consideration.

I just carried my required meds for the days and just a few extra in case anything unfortunate happens like a pill dropped and lost. And I carried my meds in my carry on definately not in my luggage. And otherwise just be aware you are way off your normal schedule and be even more aware of when you take your meds.

Title: Re: Harvoni Side effects
Post by: Katie on May 25, 2015, 03:07:24 am
Lynn and Eric...You Rock!  Traveling is not healing for me.  My home is where I am comfortable and content but not traveling is in mostly due to my arthritic issues in my knee and my ruptured disc in the lumbar area...so I won't be jumping out any airplanes or shooting rapids!  HA!  Also, I would never put myself in a position of taking a new medication while being unaware of how it was going to affect me and traveling overseas, let alone even out of state.

I don't want you to think I am weak, or in fear of adventure as I have lived in a wall tent and had all the brown and black bears all named and have been charged by brown bears at least a dozen times.  I even had a huge old crippled brown bear creep up on me and sniff my arm while cleaning the fish weir at 2:00 in the morning during a storm.  Now that's a bit close and was the first time the hair on the back of my neck stood up.  So I am all in for adventure, but am cautious with drugs and trust bears more

I do things that I take great delight in and while on treatment remodeled 2 rooms in my house, doing most of the work myself, including making trim with my table saw and am now building a bookcase.

Everyone has their own comfort levels so none is right or wrong.  We are just different and that's what makes life good.

So Lynn...when is your Alaskan adventure or have I already missed waving as you sailed by? 

Eric, I expect a good fishing report soon.  A friend just brought over a big pile of Dungeness Crab for me and that is a real treat.  Our King Salmon Derby started this week end and in spite of the clear skies and sunny hot weather, quite a few fish have been entered with the largest about 37 pounds.  We have tomorrow and 2 more weekends to go.

You both take care and I always enjoy your posts!  Hope each day brings you better health and the magic of a HepC free life!

Katie
Title: Re: Harvoni Side effects
Post by: Lynn K on May 25, 2015, 04:43:38 am
Hi Katie

Wow loved the bear story!

I was in Juneau on the 15th, Skagway the 16th, and Ketchican the 18th I waved as I went by lol

Saw hi back breaching in Juneau and an eagle catch a fish and fly over the sight seeing boat. Went up to the Mendenhal glacier

Man way warn up there almost 70 in the daytime warmer than home in Seattle!
Title: Re: Harvoni Side effects
Post by: Cute on May 25, 2015, 08:49:37 am
Hi all,

Just received the mother's blood work for the end of 8 week of the treatment. So far, ALT and AST are ok. Their level is lower than it was at the end of 2W of treatment.
But mother's albumin level is concerning me. It is going down, now it is lower than the inception of Harvoni treatment. Its level is out of the normal range. So need your advice.
By the way, virus load test is ok, virus is negative according to the 4W test.
thanks...
Title: Re: Harvoni Side effects
Post by: Kelley on May 25, 2015, 10:02:26 am
Hi Katie
I really enjoyed your post about the bear and all of us having our own comfort levels during treatment. I tend to feel I should be able to do things as usual when on treatment. Truth is I can't and I am not wrong because of it. I have been through a lot this year so far thumb reconstruction surgery and now treatment. Going on 4 months of limited abilities. I am most comfortable when going through trying things is to be in my comfortable surroundings, home.  I have been going through things at home and sorting, throwing out, and tightening things up to sell my house and relocate in the next year. I did the Ribivarin/Interferon treatment in 2003 and that was much worse by far, still not comfortable pushing the limit. Thanks for sharing your story as it is a good reminder we are all our own and all have different comfort levels and that is o.k. 59days to go, mostly very tired as far as side effects go and not always sleeping well. I am remaining very positive about the outcome.
Title: Re: Harvoni Side effects
Post by: lporterrn on May 25, 2015, 01:10:14 pm
KC, Lynn K, Mugwump and others wanting to support KC - I moved KC's comments to: http://forums.hepmag.com/index.php?topic=2803.msg22188#msg22188

KC - the topic you were commenting on has so many threads that I was afraid your comment would get lost - thought it worked better as a new topic.
Title: Re: Harvoni Side effects
Post by: Kelley on May 25, 2015, 02:39:34 pm
I have read mixed opinions about taking Tums or not for any heartburn side effects. some seem to think it effects Harvoni's efficacy. Is it o.k. to take Tums after 4 hrs of taking dose or any other method of relief suggested? Thanks!!
Title: Re: Harvoni Side effects
Post by: Kelley on May 25, 2015, 02:49:24 pm
Does the heartburn subside for those who have experienced it also??
Title: Re: Harvoni Side effects
Post by: debham on May 25, 2015, 03:16:08 pm
I have had it once really bad during the night I took a tums I haven't had it since. I'm ending week 8.
Title: Re: Harvoni Side effects
Post by: kaemicha on May 25, 2015, 03:22:07 pm
I have read mixed opinions about taking Tums or not for any heartburn side effects. some seem to think it effects Harvoni's efficacy. Is it o.k. to take Tums after 4 hrs of taking dose or any other method of relief suggested? Thanks!!

I didn't take anything until the other day. Again, I'm week 9, I think. I had two tums well after taking my Harvoni and it helped me.
Title: Re: Harvoni Side effects
Post by: kaemicha on May 25, 2015, 03:26:55 pm
I went to Italy for a week I had just passed the 12 week point of my 24 weeks. I would just say know yourself and your limitations.

If you feel fine treatment is not a reason to stop living life in my thinking. But if you find day to day is a struggle in general you might consider putting off things that would make your life more difficult.

I am fortunate and very resilient but I know not everyone feels that way.

Just use your best judgement in these situations but I still believe if you can you should try to live life

My reply seems to have gotten lost or I'm not seeing.

If I wanted to quit life I would not have taken the trip or even started on Harvoni.  I'm just putting out the other side..be cautious. Vacations out of country can wait a month or two.

I'm already planning my NYC vacay this summer.

We are here as survivors of Help C! That's living.

Be well, all!!
Title: Re: Harvoni Side effects
Post by: Lynn K on May 25, 2015, 03:37:40 pm
My trip was work related for my spouse so it was now or never.

Otherwise who goes to Italy for 1 week lol. That's just enough time to start to get over jet lag then back on two flights for 12 hours. Definitely not how I would have planned a trip to Italy while on treatment :)
Title: Re: Harvoni Side effects
Post by: Katie on May 25, 2015, 04:30:03 pm
Hi Katie

Wow loved the bear story!

I was in Juneau on the 15th, Skagway the 16th, and Ketchican the 18th I waved as I went by lol

Saw hi back breaching in Juneau and an eagle catch a fish and fly over the sight seeing boat. Went up to the Mendenhal glacier

Man way warn up there almost 70 in the daytime warmer than home in Seattle!

Glad you went to the glacier...beautiful, isn't it.  That is where Romeo the wolf entertained folks for many years.  He was a beautiful black wolf who wasn't shy or aggressive and the community loved him.  Some jerk shot him and it was sad for all SE Alaskans.  There is a book written about him.

We have had record breaking temperatures this May.  I am missing our rain, but there is no place prettier in the sunshine than SE, so am glad you got some of that, along with some wildlife.

As for bears, I could write a book on bear encounters!  A local village called me the Woman who speaks to bears!  HA!  That's what happens when you do fishery research on a salmon stream for 5 consecutive summers.  Loved it.  That's what gimped me all up too, but having those National Geographic momemts were worth it.

I week until your tests...I'll be thinking of you and am getting my dancing shoes polished up for you!  Hope you are feeling great and Thank you for your service this Memorial Day. 

My Prayers go out to all of our veterans.  Thank you so much to all who sacrificed and those who are still keeping us safe!  Remember them as you have your Bar-B-Q, as that is what Memorial Day is all about!

Katie
Title: Re: Harvoni Side effects
Post by: 2rivers on May 25, 2015, 04:46:42 pm
Starting Harvoni treatment tomorrow. Was hoping to continue playing tennis daily...any advice on what to expect for energy levels for competitive sports?
Title: Re: Harvoni Side effects
Post by: kaemicha on May 25, 2015, 04:57:23 pm
After reading here, I realize everyone is different. I quit working out when I started this but I've got other balance problems..or something.
Just starting to do some core and balance.
I'd say..try it and you'll know if it works for you.
Good luck. It's not a bad ride.
Title: Re: Harvoni Side effects
Post by: Mugwump on May 25, 2015, 05:45:00 pm
Starting Harvoni treatment tomorrow. Was hoping to continue playing tennis daily...any advice on what to expect for energy levels for competitive sports?
Much depends upon the condition of your liver. My liver is cirrhotic and I felt like lacing up a pair of skates after 8 weeks of treatment and picking up a hockey stick, or even playing broom ball for the first time in 35 years after 6 weeks of treatment. Then the reality of having a liver at f4 set in.

Eat and exercise normally to your abilities, I fly fished and waded the Stamp river in the cold of January, which is quite strenuous, this year and was not at all anxious about doing so and I am 62 years of age and overweight. So there is no reason why if you are currently active that Harvoni will effect your ability to exercise in a negative way. It seems that the many that are are experiencing trouble with Harvoni have other health issues happening at the same time.

You will be helped greatly by making sure you stay hydrated, in fact many report headaches and nausea if the do not stay well hydrated and eat normally.

Take care and welcome to this forum.
Eric
Title: Re: Harvoni Side effects
Post by: 2rivers on May 25, 2015, 05:56:40 pm
Thanks for the advice. It's 5 hour round trip tomorrow to pick up the meds, so I may not start until the following morning. I think I'll take the dose in the mornings so that I won't have to deal with acid reflux while trying to sleep.

I'm 65, with good BMI, blood pressure, heart rate, etc. So far I have no noticeable symptoms, even though I was likely infected in the early 70's. I'm about an F3 with viral load of 2.5 million. Hoping for few side effects, but even if there are some I'm sure it will be worth it.
Title: Re: Harvoni Side effects
Post by: debham on May 25, 2015, 06:07:05 pm
@2rivers   I have been ok with being able to keep up with my spin class since starting Harvoni I'm finishing week 8 tomorrow 4 more weeks to go. I have noticed as of late I can't go as fast as I use to before starting Harvoni and the energy level has not been where it was when I first started. But I still go to class. I was capable of hitting a high heart rate in the 160's but only hit in the 150's now if that. So yeah the energy does taper off but my thought is  I don't have to burn up the track as long as I get there I'm doing good. I'm hoping that I am cured and I'll be able to get back to my normal pace. Others have had fatigue and some haven't. My fatigue just started this last week. Good luck with your treatment and keep us posted.  Deb
Title: Re: Harvoni Side effects
Post by: Mugwump on May 25, 2015, 07:35:51 pm
Thanks for the advice. It's 5 hour round trip tomorrow to pick up the meds, so I may not start until the following morning. I think I'll take the dose in the mornings so that I won't have to deal with acid reflux while trying to sleep.

I'm 65, with good BMI, blood pressure, heart rate, etc. So far I have no noticeable symptoms, even though I was likely infected in the early 70's. I'm about an F3 with viral load of 2.5 million. Hoping for few side effects, but even if there are some I'm sure it will be worth it.
Worked for me in the morning and then waiting a while before eating. Sounds like you do not have the BMI problems that I have but now that I have a chance I will work on that aspect of liver disease and how HCV almost put me under and made me stop being active.

That is the most important thing to consider about your health post treatment IMO if you have liver damage. LOSE SOME PORK and good healthy exercise and a sensible diet is the best prescription that I know of for that.

Thank heavens I have been given another chance to actually try to lose weight and for some of us this can also a be a good side effect of being treated by Harvoni.

Cheers
Eric
Title: Re: Harvoni Side effects
Post by: 2rivers on May 26, 2015, 01:05:33 am
Thanks again for your comments and encouragement Mugwump and Debham. Will let you know how it's going. Hope you don't mind if I pester you with more questions as treatment progresses. Take care...
Title: Re: Harvoni Side effects
Post by: coloradogirl on May 26, 2015, 09:22:16 am
@2rivers,
I have tried to stay at the same fitness level, working out as much as possible 3 to 5 times a week. I have noticed some decline in muscle mass and achy joints. I was able to do 12 full pushups at end of treatment, Sunday. But Monday, I was hiking did a double step, and tweeked (perhaps tore my calf ligament. So keep up the fitness level, but be aware of any ligament and tendon discomfort, and definitely warm up and stretch before games.
Title: Re: Harvoni Side effects
Post by: 2rivers on May 26, 2015, 09:59:24 am
Thanks coloradogirl, and congrats on EOT and your undetected status! (Hope you don't have a torn ligament.)
Title: Re: Harvoni Side effects
Post by: chevy333 on May 26, 2015, 10:53:25 am
   next day after changing meds to 800mg motrin per liver dr order, i feel better, thank god ,the ibuproin does work better than the 1000 mg tynenol for my headaches, she said you can take 800mg every6  hr if needed, so far been lasting more than 6  hrs.   i will keep you informed on my status
     GREAT NEWS I STARTED WITH A VIRUS LOAD@ 2 MILLON AND AFTER ONLY 4 WEEKS, I AM  0  UNDETECTED   NO MORE HEP C    THIS IS A MIRACLE DRUG    STILL GOT HEADACHES EVERYDAY   SO EVERYONE , THERE IS A HOPE AND A CURE, IVE HAD HEP C FOR 40 YRS NOW IN VIRUS FREE   THANK  GOD AND THANK THE PEOPLE THAT CAME UP WITH THIS CURE AND THANK THE PAP PROGRAM FOR PICKING UP THE TAB FOR THE MEDS.................TERRY
Title: Re: Harvoni Side effects
Post by: Katie on May 26, 2015, 12:54:58 pm
Congratulations Chevy, but remember you have to complete your treatment and still be good to yourself.  In treatment results are not always the final results, but you are a strong responder and you have a good chance on beating Hep C.

I am Undetected and my 12 week(SVR12) post treatment test is the end of June.  If that remains UNDETECTED I will finally relax but will still wait for the 24 post treatment test (SVR24) to feel I have won the battle.

Not raining on your parade, just didn't want you to get ahead of yourself.

Katie
Title: Re: Harvoni Side effects
Post by: kaemicha on May 26, 2015, 03:28:40 pm
Not Chevy, but I want to thank you for your post. I didn't know this. I've got one week to go. I guess I'll find out soon if I'm rid of Hep C.
Title: Re: Harvoni Side effects
Post by: Katie on May 26, 2015, 04:06:17 pm
Correction on my above post.  My test scheduled for end of June is actually week 16 post treatment.  Sorry about that.  I was detected but not countable at EOT so they tested me around 8 weeks where I was UND.  Because of this instead of the normal 12 week test they scheduled me for 16 weeks.  Just for all of you who may come back detected but a strong responder there has been 3 of us Detected at EOT so far, and we all cleared with our next test.  That is unlike any previous treatment and really quite amazing, so never give up!

Katie
Title: Re: Harvoni Side effects
Post by: Lynn K on May 26, 2015, 04:14:18 pm
Also not wanting to rain on your parade but undetected is not the same as zero it just means below the ability of the test to detect the virus.

We have a a few here who were undetectable while on treatment but relapsed after treatment ended. That is why it is so very important you complete your treatment and take your meds as directed.

Hoping you are in the majority who make it to SVR

Good luck
Title: Re: Harvoni Side effects
Post by: chevy333 on May 26, 2015, 04:17:46 pm
ok dr lynn, believe me im gonna complete my treatment, and please dont rain on my parade, 95 percent dont get it back  relapse   
Title: Re: Harvoni Side effects
Post by: Lynn K on May 26, 2015, 04:29:37 pm
Hi Chevy

Nope not a doctor nurse or any kind of medical person not even on TV lol.

Just a patient who has had hep c for 37 years, was a null responder to interferon and was not detected at week 4 and EOT 12 on Sovaldi Olysio last year but relapsed 12 weeks post so just was hoping to let you know that.

But yay congrats at being not detected at week 4 on treatment good news is always good!

Best to you :)
Title: Re: Harvoni Side effects
Post by: chevy333 on May 26, 2015, 04:52:42 pm
good luck too you also :)
Title: Re: Harvoni Side effects
Post by: Mugwump on May 26, 2015, 05:09:10 pm
     GREAT NEWS I STARTED WITH A VIRUS LOAD@ 2 MILLON AND AFTER ONLY 4 WEEKS, I AM  0  UNDETECTED   NO MORE HEP C    THIS IS A MIRACLE DRUG    STILL GOT HEADACHES EVERYDAY   SO EVERYONE , THERE IS A HOPE AND A CURE, IVE HAD HEP C FOR 40 YRS NOW IN VIRUS FREE   THANK  GOD AND THANK THE PEOPLE THAT CAME UP WITH THIS CURE AND THANK THE PAP PROGRAM FOR PICKING UP THE TAB FOR THE MEDS.................TERRY
The best way to get over the sudden elation that comes with being UND or <15 like I was at week 4 is to do something special for yourself and some you love. Do it without thinking or caring and do it like a little child without knowing why or caring just let your judgment and sense of trust in yourself do the work.

I wish you continued joy as you complete your treatment.

Eric
Title: Re: Harvoni Side effects
Post by: debham on May 26, 2015, 05:51:35 pm
Eric,  That's a wonderful post. Something we should all do. Kind of like walking through a park. Stop and smell the roses as a child would do just because. Take a big deep breath just because you can.   
Title: Re: Harvoni Side effects
Post by: chevy333 on May 26, 2015, 06:08:07 pm
im way past that, im also a 2 time cancer survivor, back to back, first lyphomia then throat cancer, so in my shoes ,everyday my feet hit the floor, im blessed and stop to smell the roses everyday, this harvoni is a walk in the park compared to what i went tru with cancer, i now have a half a throat, no saliva glands, lost all my teeth from redation, cant taste food good, rad took that away too, but im blessed   im cancer free 10 yrs now and no hep c, now if i could get rid of these damn headaches every fricking day i will feel really good, so god bless all and good luck
Title: Re: Harvoni Side effects
Post by: Katie on May 26, 2015, 07:35:32 pm
What a strong positive soul you are Chevy.  Thank you for sharing and I am inspired by you.

Blessings

Katie
Title: Re: Harvoni Side effects
Post by: chevy333 on May 26, 2015, 08:03:08 pm
thanks ,just like a chevy truck    tough ;) and keeps going
Title: Re: Harvoni Side effects
Post by: Mugwump on May 27, 2015, 04:18:17 am
thanks ,just like a chevy truck    tough ;) and keeps going

Terry, I really do think your headaches will start to subside soon because I see you know to keep hydrated. However it is hard to know exactly how well to keep hydrated to counteract the toxicity created by the rapid exchange of dead liver cells that suddenly need to be cleared from your system.

I still have a little bit of treatment headache 1 week post treatment. But the pain did back off at about week 18 for me. But it did not build up much until about week 14.
 
 
The extra urination I experienced for the first 2 and a half months as my liver produced more bilirubin than is normal made me consider going on adult diapers but all that passed, quite literally :o :o :o :)

So if you feel like you want to tell me to piss off I will understand..been there done that! But the headaches should not be severe or long lived after about week 6 or so for most on 12 weeks of treatment. If your are on 24 weeks it may or may not show as soon as those on the shorter treatment.

My headache has been what I would call level two and is about as much of a problem as the tinnitus has been, moderate and tolerable but annoying and persistent. Now I would call it level one at a week post treatment still around but most certainly reduced and less noticeable. So I think it is easing off as my system adjusts to the changes.

I am very happy for your success at reaching UND! and considering the problems you have experienced in the past Harvoni should come with no real surprises and should only be a minor headache to say the least ;)

All the best 
Eric
Title: Re: Harvoni Side effects
Post by: chevy333 on May 27, 2015, 07:22:55 am
well yesterday i went to my liver dr and she wrote a perscription for percocet 10mg/325 acetaminophen , well i got home and took 1 pill, thinking my headache will subside and feel alot better, well it was the opposite, after taking 1 pill my head started throbbing worst, im mean a terrible migrane, so i waited  hr and took  800mg motrin, started feeling alot better, and now this morning i have another throbbing headache, so im gonna call dr and tell the percocet didnt work and im not gonna take them anymore, wasted 53.00 dollars , so im still having bad headaches
Title: Re: Harvoni Side effects
Post by: Keanu2015 on May 27, 2015, 04:39:35 pm
Hello everyone! just popping in to give you my results. 12 weeks EOT (my last pill) was 5-14-2015. I got a complete blood work-up then. My glucose was high 153. My vitamin D was low= 21 but everything else was normal including my Alt and Ast (seen below) The Qualitative test I took was undetected! I'm still UD after week 4! My liver was damaged though so I can still feel a bit of discomfort when I do something wrong like eat too much fat, sugar, vitamin A, or iron but I am on the path to recovery!! Hoping I can add a few SVR's to my resume' now  :)
Hope you are all doing well today my peeps! :) ~K
Title: Re: Harvoni Side effects
Post by: KimInTheForest on May 27, 2015, 04:47:54 pm
Congrats Keanu on finishing Tx and on still being undetected! Well done! Good luck with your future lab results. :)

kim
Title: Re: Harvoni Side effects
Post by: Keanu2015 on May 27, 2015, 04:50:49 pm
Hey Chevy,
         I don't want to act like I'm a doctor here but I stayed away from ALL other drugs but Harvoni. I exercised, ate liver friendly meals/drinks and drank an absolute boat load of water every day. I found that water did the most to wipe away the most severe headaches. I was drinking "Empty water" -Distilled. You want distilled water because it will do a better job of carrying free radicals and dead virus out of your system. If you need a few ideas on how to improve your choices. Get a Champion juicer and start juicing up some potent veggies fresh from the earth. Not too many carrots though! they actually gave me pain when I had too many before I knew what I was doing. Too much vitamin A is no good.
Title: Re: Harvoni Side effects
Post by: Keanu2015 on May 27, 2015, 04:52:14 pm
Hi Kim, thank you so much and same to you!  :)
Title: Re: Harvoni Side effects
Post by: nadewitt on May 27, 2015, 06:13:42 pm
Congratulations Keanu!
Title: Re: Harvoni Side effects
Post by: Katie on May 27, 2015, 06:36:07 pm
It always makes my day to hear good news from folks who haven't posted in awhile or sometimes I just miss their comments!

Great News Keanu!  Now you are on the waiting train but you are well on your way to a recovery and total healing.

I have about 4 more weeks to a 16 week post treatment test and am actually looking forward to it!

Keep up the good work and enjoy this summer.

Katie
Title: Re: Harvoni Side effects
Post by: Keanu2015 on May 27, 2015, 06:45:00 pm
Hi Nadewitt and Katie!!!
Thank you very much. Nice hearing from you  :) I'm on the waiting train Katie! Agreed this is bonus healing time right now  ;) You're so close it must be super exciting! I'm happy for you!
Title: Re: Harvoni Side effects
Post by: Mugwump on May 27, 2015, 09:39:08 pm
well yesterday i went to my liver dr and she wrote a perscription for percocet 10mg/325 acetaminophen , well i got home and took 1 pill, thinking my headache will subside and feel alot better, well it was the opposite, after taking 1 pill my head started throbbing worst, im mean a terrible migrane, so i waited  hr and took  800mg motrin, started feeling alot better, and now this morning i have another throbbing headache, so im gonna call dr and tell the percocet didnt work and im not gonna take them anymore, wasted 53.00 dollars , so im still having bad headaches
Are you alone, or are there others where you live Terry? If you do not live alone please talk to them if you can even a good neighbour. If you are living alone then please try to find a relative or friend to help you for the time being. Independence is important but we are humans and it is hard to deal with things that are this difficult. Harvoni is not a cakewalk it is a slow dance that needs careful attention to where you are standing. For many including myself first it is confusing as hell but after a while with relaxed contemplation and attention to detail it becomes easy to deal with. I know the stigma of having HCV causes us to become recluse but fortunately this terrible aspect of having the disease is finally starting to change!

Currently as I wait on pins and needles for the verdict whether or not I am undetected at end of treatment, the person who I love and is my life partner is back east helping deal with very serious health issues in her family. Something which we did not expect to happen. But we are in close contact and have a safety net in place if I get into any trouble at all.

One thing about HCV treatment that is crucial is to have a support network, I know that I would not have been able to handle interferon completely on my own in 2004. And Harvoni though much easier for the majority is still a very serious treatment that needs  careful administration.   

I sincerely hope your headaches ease up and soon!
Eric
Title: Re: Harvoni Side effects
Post by: chevy333 on May 28, 2015, 11:16:38 am
Are you alone, or are there others where you live Terry? If you do not live alone please talk to them if you can even a good neighbour. If you are living alone then please try to find a relative or friend to help you for the time being. Independence is important but we are humans and it is hard to deal with things that are this difficult. Harvoni is not a cakewalk it is a slow dance that needs careful attention to where you are standing. For many including myself first it is confusing as hell but after a while with relaxed contemplation and attention to detail it becomes easy to deal with. I know the stigma of having HCV causes us to become recluse but fortunately this terrible aspect of having the disease is finally starting to change!

Currently as I wait on pins and needles for the verdict whether or not I am undetected at end of treatment, the person who I love and is my life partner is back east helping deal with very serious health issues in her family. Something which we did not expect to happen. But we are in close contact and have a safety net in place if I get into any trouble at all.

One thing about HCV treatment that is crucial is to have a support network, I know that I would not have been able to handle interferon completely on my own in 2004. And Harvoni though much easier for the majority is still a very serious treatment that needs  careful administration.   

I sincerely hope your headaches ease up and soon!
Eric
   thanks eric but my headaches are worse the dr wrote me another perscription for imitrex for migranes  20 bucks for 6 tabs  so far not working im having severe migranes now not just bad headaches, in 12 days i will be at 8 weeks, my dr said please try to hang in there for 8 weeks thats 60 days of treatment, i have no choice but to stop treatment at 8 weeks, i was undetected at 4 weeks, im spent on the headaches, i cant take no more, i even drank 96 oz of water the other day   no diff, the migranes has taken over and there winning, so that were i stand, i just need to get to june 9th,,,,,,,,,,,,terry
Title: Re: Harvoni Side effects
Post by: KimInTheForest on May 28, 2015, 12:09:58 pm
   thanks eric but my headaches are worse the dr wrote me another perscription for imitrex for migranes  20 bucks for 6 tabs  so far not working im having severe migranes now not just bad headaches, in 12 days i will be at 8 weeks, my dr said please try to hang in there for 8 weeks thats 60 days of treatment, i have no choice but to stop treatment at 8 weeks, i was undetected at 4 weeks, im spent on the headaches, i cant take no more, i even drank 96 oz of water the other day   no diff, the migranes has taken over and there winning, so that were i stand, i just need to get to june 9th,,,,,,,,,,,,terry

Have you tried medical marijuana for the migraines, terry? It might do the trick. Hang in there, and good luck!

best,
kim
Title: Re: Harvoni Side effects
Post by: chevy333 on May 28, 2015, 02:46:07 pm
  yes, i have, no relief, i just got off the phone with liver dr. and she told me ,we dont have much choice but to quit treatment and hope the virus doesnt come back, i was undetected at 4 week and i  got 12 days to go to make 8 weeks, i must be weird, she told me out of 170 patients on harvoni, im the only ONE, with severe migranes everyday, what great odds da!, so im gonna try to go 12 more days, i dont know if i can, so thumbs up!,,,,,,,,,,,,,,,terry
Title: Re: Harvoni Side effects
Post by: concerned father on May 28, 2015, 04:20:36 pm
I would not stop the treatment, this is your life you are talking about.
Title: Re: Harvoni Side effects
Post by: MEG on May 28, 2015, 04:29:02 pm
Chevy---I'm so sorry to hear you're having these severe migraines that are not letting up..

Have you considered eliminating foods to see if one of them in combination with Harvoni? may be aggravating the pain?  Seasonal allergies contributing to the reaction?

Only you and your doctor can know what's best for you. Please try every other option, leave no stone unturned before stopping.   
Title: Re: Harvoni Side effects
Post by: MEG on May 28, 2015, 04:31:03 pm
@Keanu

It's so great to hear from you. I was just thinking about you the other day when I came over here...

Welcome aboard the SVR waiting train! I also was UD at 4 weeks post...........still some tinnitus(but nothing to complain about) and my fatigue is slowly improving.....God bless Harvoni!

Title: Re: Harvoni Side effects
Post by: 2rivers on May 29, 2015, 11:09:46 am
Chevy: The doctor must think your migraines are due to dilated blood vessels in your brain if he prescribed Imitrex. Sorry to hear it is not working. I hope there is some way you can endure to stay on treatment. Long shot, but you might consider a chiropractor - some migraine patients (my wife included) have gotten some relief from a realignment of the neck muscles.

I'm happy to report that, after 4 days of beginning a 12-week Harvoni regimen, I am experiencing absolutely no side effects. If anything, I have more energy than normal...still playing tennis everyday, doing yardwork, biking, etc. I'm drinking tons of water, but haven't changed anything else. I hope I didn't just jinx myself as I notice some posters started experiencing adverse side effects some time after beginning treatment. 
Title: Re: Harvoni Side effects
Post by: chevy333 on May 29, 2015, 11:16:52 am
the dr and i tried everything, im done !!  and for the people to say keep going, they dont have these SEVERE HEADACHES, AND NOTHING WORKING TO GET RELIEF, SO IM SPENT AND I CANT TAKE THIS NO MORE, WHEN YOUR DONE YOUR DONE, I NEVER EXPERIENCE ANYTHING LIKE THIS EVEN TRU 2 CANCERS, SO IM DONE,  IM  UNDETECTED AND HOPE IT STAYS THAT WAY.
Title: Re: Harvoni Side effects
Post by: KimInTheForest on May 29, 2015, 01:18:21 pm
the dr and i tried everything, im done !!  and for the people to say keep going, they dont have these SEVERE HEADACHES, AND NOTHING WORKING TO GET RELIEF, SO IM SPENT AND I CANT TAKE THIS NO MORE, WHEN YOUR DONE YOUR DONE, I NEVER EXPERIENCE ANYTHING LIKE THIS EVEN TRU 2 CANCERS, SO IM DONE,  IM  UNDETECTED AND HOPE IT STAYS THAT WAY.

I hope your viral load stays undetected too, @Chevy333 :) And if by any chance it doesn't, just remember that new and even better drugs are entering the pipeline all the time. The race is on. You will have another chance with something else if you need it. But let's hope you don't!

Best of luck to you,
kim
Title: Re: Harvoni Side effects
Post by: Mugwump on May 29, 2015, 01:56:24 pm
Chevy: The doctor must think your migraines are due to dilated blood vessels in your brain if he prescribed Imitrex. Sorry to hear it is not working. I hope there is some way you can endure to stay on treatment. Long shot, but you might consider a chiropractor - some migraine patients (my wife included) have gotten some relief from a realignment of the neck muscles.

I'm happy to report that, after 4 days of beginning a 12-week Harvoni regimen, I am experiencing absolutely no side effects. If anything, I have more energy than normal...still playing tennis everyday, doing yardwork, biking, etc. I'm drinking tons of water, but haven't changed anything else. I hope I didn't just jinx myself as I notice some posters started experiencing adverse side effects some time after beginning treatment.

Thanks for this info about why Chevy needed the med I was really concerned about his situation.  I would hate to see anyone have to give up during the critical phase of eradication of the virus when the viral load is low but uncertain as to whether or not completely clear!

One word of caution though, please try not to over do exercise, certainly it is a necessary thing but your liver will go through some changes and you can wind up with muscular fatigue on this med. I did when I over did it because my strength returned. My stamina however is another question, I highly doubt that I could do an all day hike in a strenuous place with a heavy back pack. Before HCV started to put me down in about 1980 I was in shape to the point were I could carry 75 lb hose packs on my back all day fighting forest fires.

My stamina is much  better but it still has a long way to go before I can put in the 8 to 10 hours of hard physical work that is necessary to actually make a living for us long term industrial slaves that have been made house bound by HCV ::)

Most likely you have not had the same level of liver damage that I have but still Harvoni does tax the system and you might or might not find strenuous exercise possible at some time during and for a short period after treatment.

Please keep us up on how you do because the correlation between the level of physical activity while on treatment and the relative levels of liver damage is good to know for those who consider working hard physically while on treatment!  Certainly this is more anecdotal evidence than scientific but the studies of Harvoni give no indication whatsoever as how people actually react to the changes that happen to their systems.

At least this way those who tend to overexert themselves to make a living will find some re-assurance in the experiences of others not experiencing problems with overexertion.

take care and slay the dragon
Eric

Title: Re: Harvoni Side effects
Post by: angelina on May 29, 2015, 02:15:04 pm
Hi everyone.
I am 1 month on Harvoni. Didn't have any bad side effects for the first week and then contracted or developed a bad cold/fly which is there for 3 weeks now and doesn't seem to go away. It's like going in circles - gets better and than all the symptoms come back again - and so for 3 weeks. Does anybody have that? I believe I can't take any medication or antibiotics while on Harvoni, is that right?

Is it really a side effect or it means that i am not fighting the virus?

Appreciate any advice...
Title: Re: Harvoni Side effects
Post by: bassman55 on May 29, 2015, 03:20:49 pm
I'm 4 weeks in of 12 week treatment and riding my motorcycle,fishing,playing music(gigs),cutting grass,etc. As I said in another post,I had one day maybe day 8 that I had vertigo for about 5-6 hours,it's been cake since,I look forward to my pill every day! 8)
Title: Re: Harvoni Side effects
Post by: Katie on May 29, 2015, 03:36:49 pm
Hey Bassman...My treatment was good too except for weeks 8 &9 where I had about 10 days of severe depression, something I had never experienced before.  One morning I woke up feeling terrific again!  Since I've been off treatment, not feeling all that good.  Really tired with no endurance or ambition, which isn't like me either.  The good news is, others who have been feeling lousy after treatment are now coming around and feeling good so I am looking forward to that, and I must say, I've been missing my Harvoni pill.  I felt better on treatment than I had in years and remodeled my 2 bedrooms.

Angelina:  I suggest you go to the doctor to make sure you don't have pneumonia since it is hanging on for so long.  There was a gal on this forum who was sick in the same way and that is what she had and the doctor did give her antibiotics.  You don't need to be stressing your immune system right now so best be cautious.

Hope everyone is enjoying this summer and for anyone in Texas, I hope all is OK for you and your family!

Katie
Title: Re: Harvoni Side effects
Post by: bassman55 on May 29, 2015, 03:43:39 pm
Now ya got me worried....I just keep positive,working on tunes for gigs keeps my mind sharp and makes me focus on the task at hand.And riding my scoot makes me forget all my problems,it's my "cycletherapy"    ;)
Title: Re: Harvoni Side effects
Post by: dragonslayer on May 29, 2015, 03:48:45 pm
Now ya got me worried....I just keep positive,working on tunes for gigs keeps my mind sharp and makes me focus on the task at hand.And riding my scoot makes me forget all my problems,it's my "cycletherapy"    ;)

Riding and Music.... Great therapy!! HCV has been so unkind to so many icons in music... The list is too long, and the outcomes often too depressing to see our erstwhile heroes struck down like that.  If only Harvoni came a long just a little sooner...
Title: Re: Harvoni Side effects
Post by: Katie on May 29, 2015, 04:13:50 pm
Now ya got me worried....I just keep positive,working on tunes for gigs keeps my mind sharp and makes me focus on the task at hand.And riding my scoot makes me forget all my problems,it's my "cycletherapy"    ;)

Didn't mean to worry you..I cleared the virus, so far (approx week 12 post) and remember everyone has different experiences.  I just wanted to give you heads up in case your energy fades.  It may just be part of the healing process.  Many folks feel fine after treatment and others don't.  Who knows why.

I like you cycletherapy.  A good way to energize, with the wind in your hair and the music in your soul!

Katie
Title: Re: Harvoni Side effects
Post by: dogdave on May 29, 2015, 04:31:57 pm
Hi everyone.
I am 1 month on Harvoni. Didn't have any bad side effects for the first week and then contracted or developed a bad cold/fly which is there for 3 weeks now and doesn't seem to go away. It's like going in circles - gets better and than all the symptoms come back again - and so for 3 weeks. Does anybody have that? I believe I can't take any medication or antibiotics while on Harvoni, is that right?

Is it really a side effect or it means that i am not fighting the virus?

Appreciate any advice...

Angelina, talk to you GI or contact a Gilead nurse and they should be able to advise you.  Hope you feel better,  I have some miners issues, but I am saving  them for my GI.  See someone that can advise you with Harvoni, most General Practitioners can't.

Good luck! David
Title: Re: Harvoni Side effects
Post by: joelyzabeth on May 29, 2015, 05:18:58 pm
Hello everyone!
Started week 3 of Harvoni on Sunday and will be going in for my f/u labs on June 2. Still experiencing some side effects but nothing I haven't been able to manage. Just got over the flu earlier this week and the combination of Harvoni tx and the flu doesn't mix well. Glad to say although I am still having sleeping problems I am feeling more rested if that makes any sense at all.

My appetite has improved and I am starting to feel more energetic and not as fatigued as I was when I first started.  I keep myself hydrated as much as possible and although I am not a physically active individual I have been spending more time outside.

Since my VL was originally <1 million I am hoping for an undetectable status when I go in for labs. Taking a trip to VA for my little sister's HS graduation for a few days, hoping the trip will do me some good. Traveling from New Jersey.

It's good to see so many success stories mist Rhea aide effects, etc. It's also informative to know I  not alone in my struggle with those who are experiencing some of the same issues I am taking Harvoni. All I can hear my doctor saying is, "Jo, it's only 12 weeks! You can make it. " I'm hoping she is right as its not just my Hep C she has to monitor we have to make sure we keep my HIV at an undetectable status as well as achieving UND for the Hep. Wish me luck and I keep everyone in my thoughts and prayers and look forward to reading your posts for inspiration.

Blessings......
J
Title: Re: Harvoni Side effects
Post by: bassman55 on May 29, 2015, 07:02:13 pm
Thanx Dragonslayer and Katie....I'm in it...to win it!  I've had itching for a couple years,mostly my back and I read that's a symptom of cirrosis ,but have noticed it easing up slightly.Man if there's one thing I want to go away it's that! My left shoulder is in pain now from trying to reach around to my back to scratch or put lotion on. I've been dating a french chick,and at a gig I asked her to scratch my back...she said no,you don't do that in public....WHAT???  Needless to say,I'm now going to find an american GF now...there has to be someone out there who'll scratch my back?  LOL  F#ck the french etiquette   >:(
Title: Re: Harvoni Side effects
Post by: Katie on May 29, 2015, 07:29:55 pm
You got a good chuckle out of me with that Bassman!  I had a couple little bunmps on the back of my neck (easy reach) for YEARS that would itch like crazy.  I even had a biopsy done on them as I was worried since I've had skin cancer in the past.  They kept itching until after treatment and one day they were gone.  YAY...totally gone.  No more itching and no more bumps.  A small thing, but irritating and worrisome.

So here is to an itch free future and one less thing to screen your GFs over.  HA!

Katie
Title: Re: Harvoni Side effects
Post by: bassman55 on May 29, 2015, 08:58:51 pm
Katie...I PRAY....this itching goes away by the end of treatment,I have 8 more weeks,this is probably comparable to Dick Chaney and his water boarding torture tactics. Maybe this is where "The 7 year itch" came from???   Luckily I use my back scratcher gently on my back and not scaring or causing blood,it has been bugging me at gigs from my strap holding my bass....but I can still get jiggy!!!!  LOL Rawk on!
Title: Re: Harvoni Side effects
Post by: bassman55 on May 29, 2015, 09:03:10 pm
P.S.   Katie,I too had skin cancer(basal cell which as far as cancer's that's the one to have) and I have a 1 inch or more scar on my cheek from that....probably from riding motorcycles for so long....
Title: Re: Harvoni Side effects
Post by: Debula on May 29, 2015, 09:14:01 pm
Hi all and Hi Baseman
I had to laugh at your French GF''s remark
I am glad your itching is getting a little better.  Mine is gone!! I hope it never returns
Hoping the same for you.   I'm glad to see that you are doing well and no more vertigo spells
Keep well
-Deb
Title: Re: Harvoni Side effects
Post by: livinginthemoment on May 29, 2015, 10:37:21 pm
So i have had hep c for quite some time now. My doctor has always been on top of the tests and kept telling me of all the meds coming. And finally there is Harvoni. My insurance had sent me a letter at the beginning of the year but I was dealing with other health issues, Meniere's disease. So now that is being "controlled" and I knew it was time. So I made the appt and as soon as I opened my mouth we both said Harvoni together. Got approved in 2 days and the meds were delivered on this past Wednesday. I started on Thursday morning. Problem is i have been having pain in my lower abdomen since Wed night (before even starting Harvoni). And now I am dealing with what my doc believes is a ruptured ovarian cyst and the fatigue and mild headache. I am hoping the cyst goes away and I can start to focus on the treatment. I was not aware how much water I am supposed to be drinking until i read this thread. Not that i would have been able to for the past two days. But will start increasing it immediately. I am very nervous because this is the first treatment I have been through.  Right now I just want the pain to go away so I can sleep thru the night, or at least try. I am hoping I don't end up in the er. But if I do, is there anything I need to be careful of? I know they would need to know that i am on it, but am I limited to what they can do for me. I dont want to stop treatment but I want to start feeling better.
Title: Re: Harvoni Side effects
Post by: bassman55 on May 29, 2015, 11:11:30 pm
Thanx so much Deb !!!!  I'll be one happy guy the day "the itch" ends,I'm really happy to hear you rid of the itch,good lord it sux!....I think I better stick with american women  ;~)
Title: Re: Harvoni Side effects
Post by: bassman55 on May 29, 2015, 11:18:25 pm
Hi Livinginthemoment....Yes....drink lots of water! It seems to work for me,I don't think I've ever been as hydrated as I am now!  : )    Hang in there,think positive,try to stay busy with things in your life to take you're mind off of the treatment...just my 2 cents    Good Luck!!!!
Title: Re: Harvoni Side effects
Post by: angelina on May 29, 2015, 11:24:06 pm
Thank you David and Katie. The thing is that I am not in the states and my hepatologist doesn't seem to have any experience with Hepatitis c. And there r not many around who have... Mine was going to the internet looking for all the answers and when I asked him some advises from his experience - the answer was as weird as "I am not putting experiments on my patients..."  Ridiculous!

Please advice how can I contact Gilead from overseas?
Title: Re: Harvoni Side effects
Post by: KC on May 29, 2015, 11:46:45 pm
I am down to 13 days to go before my 12 weeks are up with Harvoni. My first 5 were wonderful put the past couple weeks I came down with symptoms. Had to call my doc on Wed because I was really "out of it" when I say that I mean my brain just didn't seem to be working properly. I was very uptight anxious and very short tempered. My nurse expressed that some of this could be due to my high Ammonia levels. I haven't read anything about that issue on here, which surprises me. I am on a different med for the Ammonia levels and have been for a few months. If you research it, you will find it can effect the brain. My nurse thinks that was part of my problem with the anxiety/etc. I just thought I would bring the subject up in case others have the same issue.

Nurse also mentioned that just because I did so well for 5 weeks doesn't mean anything. EVERYONE is different. Some do better in the beginning, middle or end. I have been feeling better past couple days but look forward to getting off this stuff. It feels like it teases me with the symptoms: sometimes insomnia, fatigue, energy, headaches, muscle/bone pain. I never know from day to day how I will feel. Today I had tons of energy and it felt wonderful. Finding this to be some strange medicine but if it works it will be worth every minute. Good luck all!

KC
Title: Re: Harvoni Side effects
Post by: Philadelphia on May 29, 2015, 11:51:10 pm
Where are you, Angelina? O/S access varies according to country.
Title: Re: Harvoni Side effects
Post by: Katie on May 29, 2015, 11:54:18 pm
Thank you David and Katie. The thing is that I am not in the states and my hepatologist doesn't seem to have any experience with Hepatitis c. And there r not many around who have... Mine was going to the internet looking for all the answers and when I asked him some advises from his experience - the answer was as weird as "I am not putting experiments on my patients..."  Ridiculous!

Please advice how can I contact Gilead from overseas?
Angelina, This is the site for Gilead Support Services.  I'm not sure if it is for international calls.  If not, maybe Google it.  Some folks on the forum have gotten good information from them and they have nurses available to speak with you too.  You'd have to call during the correct time frame.  It would be midnight, Eastern time now...I think.  I am Alaska Daylight Savings time.  Good luck!

It seems you should take care of your problem and since you just began treatment, maybe it would be best to hold off until this gets taken care of.  Talk to your doctor...or find another one!  Hopefully Gilead can help.

http://www.gilead.com/responsibility/us-patient-access/support%20path%20for%20sovaldi%20and%20harvoni

Katie
Title: Re: Harvoni Side effects
Post by: angelina on May 30, 2015, 12:12:47 am
Thank you Katie. I'll try to call them on Monday. I am in the Middle East. Very far... :)

I am used to have chronic sinusitis and its being bad last couple of years, now I think because of Hepatitis ...

I am half way during the treatment - end of week 4 out of 8 so probably won't stop...

I am just worried if this sinusitis/cold/fly won't jeopardize my treatment ...  Its getting hard to be sick like that for 3 weeks... need to do something....

Best wishes to everyone!
Title: Re: Harvoni Side effects
Post by: TTSP on May 30, 2015, 12:14:29 am
@livinginthrmoment I too have Menieres. Same with me. I had to wait till I could get it under control and start Harvoni. I'm 1b though. After 4 days on Harvoni I had aches and pains, and severe tinnitus with dizziness. I did not think I would make it.

It got a lot better shortly after that, came back briefly around week 7 or 8. Now a few days after EOT, all I have going on is the tinnitus. Undetected at 7 weeks, waiting now for EOT results. I feel pretty good. I'm able to do a lot more now than when I started.

@bassman I used to have some itching before treatment and my wife would scratch my back as I serenaded her with the original G.L. Crockett version of Scratch My Back! I'm a bluesman!  8)

Best wishes to all! :) I'm still confident.  8)
Title: Re: Harvoni Side effects
Post by: Katie on May 30, 2015, 01:52:15 am
Thank you Katie. I'll try to call them on Monday. I am in the Middle East. Very far... :)

I am used to have chronic sinusitis and its being bad last couple of years, now I think because of Hepatitis ...

I am half way during the treatment - end of week 4 out of 8 so probably won't stop...

I am just worried if this sinusitis/cold/fly won't jeopardize my treatment ...  Its getting hard to be sick like that for 3 weeks... need to do something....



Best wishes to everyone!

Opps...I confused your health issues with someone else I read today.  Sorry about that so I am going to copy that to her. I really need to pay more attention  Ya...don't quit now, you are half way home Flushing your sinuses out with a mild salt water solution can really help. I've had that same problem a few years back. However if it settles in your lungs have it checked out.   Hope you get some answers to your issues!

Katie
Title: Re: Harvoni Side effects
Post by: Katie on May 30, 2015, 02:00:56 am
So i have had hep c for quite some time now. My doctor has always been on top of the tests and kept telling me of all the meds coming. And finally there is Harvoni. My insurance had sent me a letter at the beginning of the year but I was dealing with other health issues, Meniere's disease. So now that is being "controlled" and I knew it was time. So I made the appt and as soon as I opened my mouth we both said Harvoni together. Got approved in 2 days and the meds were delivered on this past Wednesday. I started on Thursday morning. Problem is i have been having pain in my lower abdomen since Wed night (before even starting Harvoni). And now I am dealing with what my doc believes is a ruptured ovarian cyst and the fatigue and mild headache. I am hoping the cyst goes away and I can start to focus on the treatment. I was not aware how much water I am supposed to be drinking until i read this thread. Not that i would have been able to for the past two days. But will start increasing it immediately. I am very nervous because this is the first treatment I have been through.  Right now I just want the pain to go away so I can sleep thru the night, or at least try. I am hoping I don't end up in the er. But if I do, is there anything I need to be careful of? I know they would need to know that i am on it, but am I limited to what they can do for me. I dont want to stop treatment but I want to start feeling better.

It seems you should take care of your problem and since you just began treatment, maybe it would be best to hold off until this gets taken care of.  Talk to your doctor to see what your options are and how serious this ovarian cyst is and if it is OK to not deal with it for the duration of your Harvoni treatment. 

I have no experience with that type of issue but why tax your system fighting an additional problem.  If it were me, I'd want to do one thing at a time to give both the attention they need to get better.  Just my opinion, especially since you just began Harvoni.  Better to stop now than half way through if your problem gets worse.

Good luck to you!

Katie
Title: Re: Harvoni Side effects
Post by: joelyzabeth on May 30, 2015, 05:46:08 am
Hi joelyzabeth, and welcome to the forums! :)

I am on Day 17 of Harvoni+Ribavirin. I have not had much problems with sides so far - all minor and manageable. But I am experiencing major appetite suppression while on treatment and have been losing weight because of it (and I don't have any weight to lose). Some of my fave foods that used to be my go-to foods when I need to put weight back on do not appeal at all right now. Pasta, for example. So I have had to become a lot more diligent about eating whatever I can (so long as it is healthy, no junk food) whenever I can get it down.

Other than that, my experience has been pretty positive so far. I have actually had an increase in energy, mood, & mental functioning. I thought it was the Harvoni. But it could just be ME with the virus getting knocked down so quickly. These new drugs work remarkably quickly. My starting viral load was nearly 9 million. And after just 7 days it was down to 130! Wow! And my liver enzymes are back in the normal range for the first time in 20 years. Lots of people are reporting results like this. This is typical for Harvoni.

Have you received any results of your labs yet, joelyzabeth? it is very encouraging to see those numbers falling and makes any side effects seem worth it.

wishing you the best on your journey, with cure at end for you. :)

Kim


Good morning Kim, I  apologize for the late response. As I initially reaponsed to your post when you first sent it but for some reason I couldn't post it. Got frustrated and said the heck with it. Then I got sick wirh the flu and I tell you that really took me for a ride especially with rhw Harvoni side effects I was experiencing as well.

I didn't want your post to go unanswered so then I had to find it, lol another journey.  I go for my labs on June 2. I'm very excited to see  how the numbers will play themselves out. I've been drinking more fluids not exactly water all the time but I know I should be doing better than that. I drink a lot of orange juice so I switch between the two. 

Although my numbers are relatively low to begin with I am very anxious to see how the Harvoni is working,  especially with my other medications.  I had my lab date moved up so I can go out of town to my little sister's HS graduation. So I am assuming I should have my results when I return. Thanks for the response to my initial post, for the first time dealing with my HCV I actually felt alone. I guess it was starting a new treatment after 15 years w/o it and just focusing on my other health issues. The side effects really threw me off but they've seemed to have subsided some and become more manageable.  Once again thank you for your response, it was very much appreciated.

J 8)
Title: Re: Harvoni Side effects
Post by: livinginthemoment on May 30, 2015, 06:10:36 am
Thank you all. I woke up this morning with 95% of the pain gone. I get cysts normally but havent had one since my tubes got tied. That was a major concern i had.  But i feel sooo much better now. Now to focus on my treatment. Is it normal to have absolutely no appetite?  All i want is water which I have increased but i don't want anything  to eat. I havent eaten anything since Thursday.  Not that I dont want to but i have no desire to eat. And yes I will force myself to eat even if its protein shakes. As I stated I am new to all the treatment so I have no idea what can happen. I plan on calling Gilead to find out a few things after reading about tinnitus that some peoplw get. I already have that with the Meniere's. The only thing that gets me down is the vertigo attacks. I am so thankful to have found this forum.
Title: Re: Harvoni Side effects
Post by: bassman55 on May 30, 2015, 07:09:34 am
livinginthemoment...I've gained 6 lbs,eating very good now! And happy about it too!
Title: Re: Harvoni Side effects
Post by: joelyzabeth on May 30, 2015, 08:20:00 am
Thank you all. I woke up this morning with 95% of the pain gone. I get cysts normally but havent had one since my tubes got tied. That was a major concern i had.  But i feel sooo much better now. Now to focus on my treatment. Is it normal to have absolutely no appetite?  All i want is water which I have increased but i don't want anything  to eat. I havent eaten anything since Thursday.  Not that I dont want to but i have no desire to eat. And yes I will force myself to eat even if its protein shakes. As I stated I am new to all the treatment so I have no idea what can happen. I plan on calling Gilead to find out a few things after reading about tinnitus that some peoplw get. I already have that with the Meniere's. The only thing that gets me down is the vertigo attacks. I am so thankful to have found this forum.

GM livinginthemoment!
Good to hear the issue with the cysts has been resolved and you are feeling better. I too had such issues to contend with years ago and so did my daughter when she was a teenager.

I've been on treatment 3 weeks now and I am just regaining my appetite yet. Not as completely as I am use to eating but there has been an increase. I still find eating in the morning difficult sometimes but usually my appetite will kick in around the afternoon and then I stay hungry. If I do have an appetite in the morning than usually it'll take longer before I am hungry again.

I wish I could give you info on the other conditions you stated but I have had no experience or knowledge with them. I do suffer from anxiety attacks but that was an issue before treatment began, just like my headaches.

I am new to the forum just as you are so I say greetings ro you  [I know its delayed, lol ] and that we all can help watch each other as we go through our Hep C treatments together and provide our friendships and support.

J 8)
Title: Re: Harvoni Side effects
Post by: livinginthemoment on May 30, 2015, 12:47:23 pm
livinginthemoment...I've gained 6 lbs,eating very good now! And happy about it too!

That is wonderful news bassman55!!!
Title: Re: Harvoni Side effects
Post by: livinginthemoment on May 30, 2015, 12:50:54 pm
GM livinginthemoment!
Good to hear the issue with the cysts has been resolved and you are feeling better. I too had such issues to contend with years ago and so did my daughter when she was a teenager.

I've been on treatment 3 weeks now and I am just regaining my appetite yet. Not as completely as I am use to eating but there has been an increase. I still find eating in the morning difficult sometimes but usually my appetite will kick in around the afternoon and then I stay hungry. If I do have an appetite in the morning than usually it'll take longer before I am hungry again.

I wish I could give you info on the other conditions you stated but I have had no experience or knowledge with them. I do suffer from anxiety attacks but that was an issue before treatment began, just like my headaches.

I am new to the forum just as you are so I say greetings ro you  [I know its delayed, lol ] and that we all can help watch each other as we go through our Hep C treatments together and provide our friendships and support.


J 8)

That is great about the eating. I think I just feel like I am doing this alone which I know I'm not. But the treatment is really in our hands. I am so used to doctors doing stuff...lots of family members with cancer. So at times I feel like I am clueless as to what is going on and what I am to  expect. It feels so good to know other people and not be alone in this journey.
Title: Re: Harvoni Side effects
Post by: joelyzabeth on May 30, 2015, 01:05:35 pm
That is great about the eating. I think I just feel like I am doing this alone which I know I'm not. But the treatment is really in our hands. I am so used to doctors doing stuff...lots of family members with cancer. So at times I feel like I am clueless as to what is going on and what I am to  expect. It feels so good to know other people and not be alone in this journey.

No you are not alone, I kind of felt that way too at first when I  started treatment until I found this forum and saw others who are going through the same or similar experiences as myself. It's always good knowing there is such a huge support system out here foe us.

J 8)
Title: Re: Harvoni Side effects
Post by: livinginthemoment on May 30, 2015, 05:26:12 pm
Uggghhh. I was prescribed IBS meds by my gastro who os also my hepc doc. Come to find out i cant take the IBS meds. I havent had to take them until now. Went to check. And a big old no because it decreases the effectiveness of the harvoni. Now I'm terrified to eat outside of my own home. I know its temporary but that was my go to pill for my stomach issues. Was not expecting that. :/
Title: Re: Harvoni Side effects
Post by: joelyzabeth on May 30, 2015, 06:14:05 pm
Uggghhh. I was prescribed IBS meds by my gastro who os also my hepc doc. Come to find out i cant take the IBS meds. I havent had to take them until now. Went to check. And a big old no because it decreases the effectiveness of the harvoni. Now I'm terrified to eat outside of my own home. I know its temporary but that was my go to pill for my stomach issues. Was not expecting that. :/

I decided against having my GI Dr treat me for my Hep C. He treated me for my stomach issues and I suffered all last summer with gastritis and other issues only to find out in October I needed my gallbladder removed and then it was another 5 months before all of my stomach issues subsided. My ID Dr and I had discussed my Hep C tx while I was going through the stomach issues and we both agreed it would be better to wait for me to start Hep C tx.

I can only imagine the disappointment you must feel knowing your medication conflicts. I discussed that with my ID before tx and we worked around my conflict for my stomach medication. Is there any chance that you can take the medication if it's not at the same time as thw Harvoni?

Dr should have looked into that before prescribing anything. I hope you can work around this conflict and have a smooth transition for tx of both conditions. I hear IBS is uncomfortable and we already know Hep C tx is not easy.

J  8)
Title: Re: Harvoni Side effects
Post by: Keanu2015 on May 31, 2015, 08:55:30 am
Good morning everyone!
             Hi Meg, it was great hearing from you as well! I'm happy to hear your tinnitus and fatigue are letting up! awesome  :) I see you made EOT 5 days after I did. Congrats! did you get your blood work or is your doc making you wait? I wanted to report to everyone something very significant that has been happening to me just the last few days. I have been trying to exercise as much as possible throughout treatment and beyond as I wanted to lose weight and especially fat to aid my liver. Of course it needs to aid me in this endeavor! anyway that has been tough. It has not seemingly been able to burn much fat at all hardly any due to its weakened state I believe. Joints and breathing haven't been cooperative either ugh. Well anyway, here I am more than 2 weeks beyond my zero EOT result and something amazing is happening. I'm able to exercise longer with almost no pain in my previously damaged knee, my liver is not uncomfortable and when I lift I can get a few more reps. After plateauing for like a month at 225, I have suddenly lost 3 lbs to 222. I think it's starting to take command of my fat burn again but what is amazing is that I'm not overly tired as a result of making gains and feel I have more energy to close down the intervals of exercises. Early on I heard folks taking about skin hair and nails showing improvement. Ie. skin clearing up, nails and hair stronger/healthier. I'm feeling better circulation. Blood pressure is dropping down to closer to healthy normal. (it was a bit high for a while on the meds). I don't even have pain any more. Barely some discomfort on occasion. Anyway, I just wanted to share with all of you. I hope everyone is doing well today. The miracle is coming for all of us. Stay strong! God bless you all! ~K
Title: Re: Harvoni Side effects
Post by: joelyzabeth on May 31, 2015, 10:53:38 am
Congratulations Keanu2015!

Many blessings to you!

J 8)
Title: Re: Harvoni Side effects
Post by: kingharry on May 31, 2015, 11:40:47 am
Day 12 on Harvoni. Early on, through day 8, I noticed headaches, diminished appetite and minor diarrhea. Those side effects have NOT continued. Still abit fatigued but not enough to interfere with daily activities. MOST important----drink lots of water, 1/2 your weight in ounces.  Cheers, friends.
Title: Re: Harvoni Side effects
Post by: joelyzabeth on June 01, 2015, 02:21:11 am
Cheers KingHarry and God Bless. Your update sounds so much better than mine. I began week 4 on Sunday 5/31/15. Been through quite a,few side effects already except no headaches. I'm normally a headache sufferer w/o Harvoni but haven't had any sunce I've been on it.

I have a hard time drinking a lot of water. I weigh 178lb, that would be a lot of water to consume and I already use the little girl's room a lot at night disrupting my sleep.

Anywho keep up the hard work, best of blessings to you.

J 8)
Title: Re: Harvoni Side effects
Post by: angelina on June 01, 2015, 05:40:19 am
Joelyzabeth!

I experience exactly the same symptoms as you. I am usual migraine sufferer but during first month on Harvoni didn't have any!!! Only some headaches I think due to sinusitis.  Very hard to drink lots of water, trying as much as I can. Fatigue came several times for few days.
The back pain though is there all the time. I didn't have that before.

And I wish I lost my appetite a bit...Need to loose some kgs...

Congratulations to everyone with a good news!

Best cure wishes to everyone!
Title: Re: Harvoni Side effects
Post by: kaemicha on June 01, 2015, 03:36:25 pm
  yes, i have, no relief, i just got off the phone with liver dr. and she told me ,we dont have much choice but to quit treatment and hope the virus doesnt come back, i was undetected at 4 week and i  got 12 days to go to make 8 weeks, i must be weird, she told me out of 170 patients on harvoni, im the only ONE, with severe migranes everyday, what great odds da!, so im gonna try to go 12 more days, i dont know if i can, so thumbs up!,,,,,,,,,,,,,,,terry

Chevy, people here probably won't like this but my doctor gave me Vicodin. It helped! I stopped taking it, this last month of my treatment but I don't know how I would have done it without it.

One day to go for me and I am done with my 3 month treatment on Harvoni.

Hang in there, Chevy. I did when I was sick and in Paris. One more week..one more week..you have less than that to go!
Title: Re: Harvoni Side effects
Post by: Keanu2015 on June 01, 2015, 05:13:54 pm
Hello everyone!
          Congrats on reaching EOT kaemicha! MUCH better days are on the way! Chevy... hang in there buddy! try like hell to finish your tx. It is really amazing how well you will start feeling when you reach EOT. Thanks for your congrats Joely! One day at a time still...just like you all! Hang in there... You will improve!
Hope everyone is feeling good today  :) ~K
Title: Re: Harvoni Side effects
Post by: kaemicha on June 01, 2015, 05:40:40 pm
Thanks, Keanu, and I wanted to add to Chevy,
I wanted to quit - was even told to quit Harvoni, last week when I just had one week to go but the week got better.
Hang in there. Today, I did indulge in a benedryl and ibyphrophen to keep headache at bay but my headache is sinus/allergies.

Again, all good luck to all!!
Title: Re: Harvoni Side effects
Post by: bassman55 on June 01, 2015, 08:32:42 pm
I hope I'm not jinxing myself BUT...29 days in treatment and my itching has eased a bit(crossing my fingers! )  Went to an orthopedic today and MIGHT have a little tear in my rotator cuff(shoulder) and he was ready to give me a shot in it ,but I reminded him I was in treatment,so he backed down and told me to find out if it would effect the Harvoni? 
Title: Re: Harvoni Side effects
Post by: Jean123 on June 02, 2015, 10:38:41 am
Hi folks,
  New on here and finding the site hard to navigate, but hopefully this will post.
I'm one of those uncommon Genotype 4's- would love to hear about Harvoni experience with similar GT. I'm on day 27 of 12 week treatment. All in all, pretty easy. Some fatigue that comes and goes, but still able to work long hours.
Huge improvement over the horrific Interferon/Riba treatment I tried years ago.
I've noticed that the ever present nagging liver pain has abated as of week two of treatment. Having first bloodwork done in two days, feeling hopeful
Title: Re: Harvoni Side effects
Post by: hepcsincebirth on June 02, 2015, 02:27:54 pm
I am new here and wanted to post my experience on Harvoni. I am 42 and found out I have HCV (1b) in 2002. The only time I could have gotten HCV was at birth (different country where needles were reused.) Over the past 13 years my liver enzymes were always elevated (2-3x normal), and my viral load at diagnosis was 800k and has been 150k for the last 7 or 8 years. My Fibrosure went from f1 to f1-f2 to f2 with each jump taking about 4 years and I have always been A3 for inflammatory activity. I have been offered treatment several times, but decided to wait for the newer interferon/ribavirin free drugs. The insurance company approved Harvoni within a few days, and I started the 8 week treatment at the end of march. I kept a journal of any side effects I experienced. My 4 and 8 week labs were undetected with completely normal enzymes. I am waiting for the SVR12 test in august.

3/31/2015: Package arrived at 10:30am, debated on when to start taking the pills. Decided on 7pm. Took pill 1 and started to feel head fullness after 20 minutes, which changed to light headedness. Effect wore off after about an hour. Blood pressure normal (110/72)

4/1/2015: Got a mild tension headache at 6:45pm (started at 6:00pm but was initially very light, felt it on both sides of head, got stronger on left side, then equalized to right side) lasted for about 20 minutes. Took pill 2 at 7:00pm. Headache gone, light headed feeling much milder than yesterday. Blood pressure normal. Went to sleep at 9:30pm, woke up at 12:30am to use restroom, was in and out of sleep the rest of the night.

4/2/2015: Woke up with some head fullness, started to dissipate at 9:30am, but never went away. Started to get a mild tension headache at about 12:30pm. Headache dissipated after I ate lunch, and head fullness also dissipated, but still slightly there. Took pill 3, light headed feeling lasted about 10 minutes. Blood pressure normal.

After 3 pills, I hope my body is getting used to the medication. The affect of the head fullness is mainly on the sides of my head, and around my cheek bones. It feels like novacaine. 3 down, 53 to go.

4/3/2015-4/9/2015: Very minor head fullness 20 minutes after taking pill. Dissipates after 15 minutes.

4/10/2015-5/11/2015: No side effects

5/12/2015-5/18/2015: Very minor head fullness 20 minutes after taking pill. Dissipates after 15 minutes.

5/18/2015-EOT: No side effects

I tried to take the pill at exactly the same time each day. I drank a lot (at least 80-90oz each day,) and was very careful with what I ate. I cut out all sugar, all juices, anything fried, and red meat. I mostly ate vegetables, fruits, nuts, fish and chicken. I made sure I didn't eat anything for an hour before and an hour after taking the pill. Over the 2 months I lost 15 pounds.

After my positive experience, I am glad I waited. Hopefully it works.
Title: Re: Harvoni Side effects
Post by: TTSP on June 02, 2015, 02:32:26 pm
Greetings, and welcome to everyone just starting treatment!
I just got my end of treatment results! Good news :)

13 weeks after 12 week treatment on Harvoni:
Viral load still 15 undetectable
ALT 24 AST 28
Thyroid Normal
B12 Normal
Glucose normal, but 98 which is a concern for me (family history of diabetes)
Everything else is within acceptable range, given where I started.

Some side notes:
I have Meniere's also I have been on a low sodium, low sugar, and lots of water long before I started Harvoni. At the beginning of Harvoni treatment, I could barely maintain my balance to do anything. Before 1 month was up, I was getting around, doing some light household chores, and walking. After 6 weeks in, I started using the treadmill and worked my way up to 3.3 mph for 40 min.

I am 1b, 4.0 cirrhosis, treatment naive So of course I will have to follow up with 12 week after end of trial. Also keep tabs on the condition of my liver, and watch for cancer. All in all a MAJOR improvement in my life! I do still have tinnitus, since I've had that for many years (Meneire's), I can handle that for now. Maybe by the time I clear the Hep C hurdle, the latest in Meniere's treatment will be ready. It's currently in Stage 1 trials,  with several different drug companies.

I can't and won't give advice to anyone, other than pester the heck out of insurance, doctors, and Gilead. Most importantly research your personal situation. Or get someone to do it for you.

I will check in and see how everyone is doing from time to time. God bless you all.

Peace be with you!  8)
Title: Re: Harvoni Side effects
Post by: hepcsincebirth on June 02, 2015, 03:11:09 pm
I also did some research on how harvoni works, and the drugs it is comprised of. I don't have a virology background so I tried the best I could to understand what is happening. The 2 drugs in harvoni are ledipasvir and sofosbuvir (sovaldi). The sovaldi works on the virus in the blood and bonds to it so it can not infect new liver cells. The ledipasvir works in the liver cells themselves and stops the formation of new viruses. I think the reason Sovaldi can't work alone is that while it stops new liver cells from being infected, the already infected cells keep producing new virus. Eventually, the sovaldi would eradicate the virus, but at $1000 a pill, it would take too long and be too costly, plus their might be side effects from long term use. From what I read, the sovaldi doesn't cause resistance if doses are missed, but the ledipasvir can (this is why people are retreated with sovaldi and a new drug after prior treatments with sovaldi failed.)

I also read a lot about reinfecting yourself. While solvaldi is in your blood, any untreated hcv virus that gets into your bloodstream from before treatment is crippled. After solvaldi is out of your system, it makes sense that you could possibly reinfect yourself, but I think the chances are low and get even lower the longer you stay on harvoni. Since for most people, the virus is basically gone from your blood within several weeks, you would need a pre-treated sample of blood that survived for the duration of the treatment and then entered your bloodstream. The virus can live for months in optimal conditions (in blood samples, in ideal temperature, humidity, etc,) but people won't normally inject infected stored blood into their bodies after treatment. The virus can live for 3 or 4 weeks on a solid surface, but the chances after that time of reinfection are small. I think as long as you take normal precautions (the same ones you took to not infect others,) you will be fine. I suggest you change your toothbrush, razors, and clippers several times during treatment. They are inexpensive and the piece of mind is worth the $20 it will cost. The virus lives for a much shorter period on porous surfaces, clothing, etc. The overall chances of getting HCV from routes other than needles, transfusions, and tattoos are very small. It is not an easy disease to catch, and the same holds for reinfection.

I think there are 3 primary reasons for relapse:
1) a mutation in the HCV virus that makes the drug less effective (I think it reduces the SVR rate by 15-20%),
2) treatment that is too short to cripple the virus in the liver cells (especially if the liver is damaged or scarred since it can't process the medication as effectively)
3) not sticking to the regimen (including missing doses, repeatedly taking the pills at different times of the day, stopping early, taking drugs that interfere with harvoni, etc.)

The good news if you do relapse is that the drugs are only getting better. I remember 12 or 13 years ago someone called Dr.Dean Edell (radio talk show doctor,) about HCV and he said that within 20 years, the disease would be clinical. With these new drugs, he was 100% correct. Each generation of treatment is getting shorter and with fewer side effects.
Title: Re: Harvoni Side effects
Post by: livinginthemoment on June 02, 2015, 06:01:45 pm
Day 6 and my side effects have started to go away. My stomach is still an issue but I got a phone call from Avella specialty pharmacy  and they logged  it in and will report it.  I have been drinking tons of water. Cut out caffeine.  No more sugar. And walking the dog for 2miles. No more fatigue during the day and actually slept through the night last night. I feel pretty confident that the meds just needed to get used to being in my system. My body is over sensitive to medication side effect.  I get them all. But as of right now I feel wonderful. I have even been told by a coworker that has no idea what I am going through said that I look so radiant today. I feel like I'm glowing. I can't wait to get my blood drawn to see what my levels are at. Peace and love to everyone going through our battle.
Title: Re: Harvoni Side effects
Post by: TTSP on June 02, 2015, 07:46:24 pm
@hepcsincebirth Well said. Congrats and best wishes!  :)

@livinginthemoment Happy that things are getting better! Best wishes on your treatment.  :)
Title: Re: Harvoni Side effects
Post by: angelina on June 03, 2015, 08:50:35 am
Hepsincebirth!

Welcome and thank you for such an informative posts!
I didn't know its not good to drink juices. I drink lots of fresh orange juice as I am very prone for cold/flue. Need lots of vitamine C.

I agree with most of your conclusions. But still very strange that virus goes undetected and then comes back...  So u have undetected at EOT and think u r cured and 4 weeks later- relapse. What does it relapse from if there was no viruses left?...

Very strange and unpredictable disease!
 Best cure wishes to everyone.
Title: Re: Harvoni Side effects
Post by: dogdave on June 03, 2015, 09:49:29 am
Hi everyone,

My 8 week labs were given to me today and it was UNDETECTED. I'll have completed 10 weeks as of tomorrow and have 14 to go.  I hope all of you will get cured.  I know that this is a marker, but after fighting this for 45 years there is a light at the end of the tunnel!
Title: Re: Harvoni Side effects
Post by: NYC10002 on June 03, 2015, 01:17:37 pm
I am in my 3rd week of Harvoni. OMG the fatigue is getting me big time. All I want to do is sleep. I'm trying to fight my way through it. My doc yesterday said to take it before bedtime and with food. And through this forum have learned I need to drink a lot of water, which is always good. Reading your posts has really helped. Got my blood drawn yesterday and keeping my fingers crossed that my viral load is starting to go down.
Title: Re: Harvoni Side effects
Post by: bassman55 on June 03, 2015, 01:40:49 pm
Well...I'm 5 weeks in with Harvoni,I go see the Doc on the 11th,and I guess see where we're at numbers wise. The itch is back,I figured I jinxed myself when I posted a couple days ago that it was easing up.I learned from everyone here WATER....WATER......so important! I take my pill 'round 7AM every day and I'm good. I also don't have to go to work like many,I'm "retired/disabilty" so I can crash whenever I want,and it's been no disruption in my life doing treatment.....7 more weeks to go of the 12.
Title: Re: Harvoni Side effects
Post by: SunIsOut on June 03, 2015, 02:23:09 pm
All is well here! I got my garden and sailboat going and have been enjoying the spring. I go this friday for labs and about 2 weeks after EOT.

I have a lot of energy and have been very productive. I have to build a new paver wall around the roses by the gazebo in the pic below and that will be my last gardening project for the year.  I have a second sailboat I bought as an investment and will do repairs on it so I can sell it.

I hope everyone does well and was sad to hear that migraines had stopped someones treatment.  I did not have any new side effects resulting from this treatment.

(https://farm9.staticflickr.com/8889/18423886362_ef327e2b1a_z_d.jpg)
(https://farm1.staticflickr.com/463/18350213191_e82fb6330d_z_d.jpg)
Title: Re: Harvoni Side effects
Post by: Katie on June 03, 2015, 03:04:37 pm
Hi Sunis out!  Your yard is spectacular and if you'd like to sail to Ketchikan, I could sure use some help!   :D  ;)

Good hearing from you and Happy you are doing so well.  I am at about 11 weeks post treatment, SVR8 and get tested again for post treatment week 16.  I lost all of my energy completing treatment as many others as well.  I am not "suffering" like some, just really bad fatigue and no endurance, so your posts lift me up as I want to be like you! 

On treatment I was a little cyclone just knocking my projects off the To Do List like crazy, and now with the good weather...there's nothing left.  I am hopeful that this too shall pass so am remaining positive.  I find it quite interesting how this treatment differs so much from person to person.

We are all on this journey and life is wonderful  (((HUGS)))) to you and wishing you good lab results.

Enjoy the salt air and the beauty you have created and all that is around you!

Katie
Title: Re: Harvoni Side effects
Post by: Katie on June 03, 2015, 03:19:45 pm
Congratulations to all of you on treatment and those of you finishing up.  Hang in there and be kind to yourself.

There will be relapses as nothing is 100% however new drugs are on the way and they finally figured out how to destroy this alien parasitic monster!

Angelina:  The tests for your viral load are not sensitive enough to count every single virus and they could very well be missed in the blood draw.  Remember, they replicate in liver tissue, so you can come back Undetected during treatment and there could be some lurking somewhere that the test missed.  That is the reason the post treatment tests are needed to see if there are any left to replicate.  Since they replicate exponentially, there will be enough for the test to pick up and count after that period.  Evidently they have determined the virus to be incapable of replicating after a 12 week period so that is like their life span to be viable. They also do a followup at 24 weeks to make sure, so that is when I will feel confident that I am free of HepC for good.  It's a waiting game, and that is difficult, but it is well worth it.  Everyone is different and this is a new drug, so we'll have to see how it all works out for long lasting results.  In my case, I was detected <15 at EOT but 8 weeks later was Undetected.  My thought on that was there may have been fragments of the virus which was picked up, but they were not replicating and so I cleared.  Harvoni does not KILL the virus, but prevents it's replicating process so the fragment theory makes sense to me.

So..Good luck to everyone.  It's exciting to be part of this breakthrough and eventually this devastating disease will be wiped out altogether.  Enjoy your summer!

Katie
Title: Re: Harvoni Side effects
Post by: pandaman on June 03, 2015, 04:03:33 pm
Hi everyone,

1st post...

62 years old and, most likely got infected in the early 80's. Registered today because I got the call that I've been approved for 8 weeks of Harvoni.

I was diagnosed about 94 with non A non B with antibodies to type A.

All my roommates and I got type A in college. (early 70's)  I remember back then it was called infectious hepatitis, there was no alphabet of hep viruses to my knowledge. About a weeks of bed rest and I was over it.

I had a biopsy done in 2005 and it showed fibrosis stage 2. The fibrotest just recently done shows fibrosis stage 1-2. My doctor can't answer why my fibrosis
shows an improvement after 10 years.

My ALT and AST levels are in normal range and blood platelets are healthy.
My viral load is 8,000.

My doc tells me to keep doing whatever it is I'm doing because my 2015 labs are
much better than my 2005 labs.

He submitted to the insurance company a couple of days ago and told me to expect to be rejected. He claims to have patients with stage 4 being denied.

Being that I just got approval, I don't know when I will actually start. I want to thank everyone here for sharing their experiences.

Title: Re: Harvoni Side effects
Post by: dragonslayer on June 03, 2015, 05:12:11 pm
>>I had a biopsy done in 2005 and it showed fibrosis stage 2. The fibrotest just recently done shows fibrosis stage 1-2. My doctor can't answer why my fibrosis
shows an improvement after 10 years.<<

Have to remember that biopsy is still the 'gold standard', and fibroscan/fibrotest/fibrosure are generally not as accurate.

That's a tiny viral load youve got there..   Congrats on your approval; 8 wks?
Title: Re: Harvoni Side effects
Post by: 2rivers on June 03, 2015, 11:44:54 pm
Quote
Please keep us up on how you do because the correlation between the level of physical activity while on treatment and the relative levels of liver damage is good to know for those who consider working hard physically while on treatment!  Certainly this is more anecdotal evidence than scientific but the studies of Harvoni give no indication whatsoever as how people actually react to the changes that happen to their systems.

Hi Mugwump. I'm happy to report that after 9 days of Harvoni I'm still able to keep up with my normal routine - playing tennis 5 times a week, biking, yardwork, etc. I can tell that I'm "on something", but the side fx are certainly minimal. I had a slight headache the 1st few days, but nothing now. I seem to be sleeping normally (I take my pill at 9 PM) and my energy levels are mostly normal. The only thing I have noticed is that by the 3rd set of tennis I lose my focus a bit and get slightly fatigued.

It seems a little weird that the little pill that I set on the coffee table after supper (so I won't forget) is the same as stacking 12 $100 bills on the table! I'm covered for the 1st eight weeks, other than my deductible, but I'll have to pay the last 4 weeks myself. Momentum Insurance will cover 20% of the last 4 weeks, however, it's still going to set me back about $30k. If it works, and I'm optimistic that it will, it will be well worth it.

My viral load at the start of tx was 2.5 million and fibrosis was stage 3. I've probably been infected for 45 years...
Title: Re: Harvoni Side effects
Post by: Katie on June 04, 2015, 01:12:00 am
2rivers:  You might want to check with Gilead as several have gotten help with their treatments through them.  Doesn't hurt to check.  Good luck to you and glad to hear things are going well.

Katie
Title: Re: Harvoni Side effects
Post by: ponygirl on June 04, 2015, 09:47:52 am
Hello world. I took my 3 month blood draw last week and on my (65th) birthday I got results that the virus is Not Detected. 12 more weeks to go but I could not have gotten a better present (thanks Gilead).

About side effects; Since I have been off the Ribavirin for 1 month my only side effects are sleep disruption, higher BP and pulse rate. I had one headache in three months. Some minor tachycardia and arrhythmia episodes but it was much worse when I was on Harvoni AND Ribavirin.

For those who have been following my posts; The Ribavirin side effects were so bad that I had severe depressive symptoms, dry mouth, cough, erratic heart beats on a daily basis.. I had to take off work for a week to get those symptoms under control by decreasing and then stopping the Ribavirin. The side effects from the Ribavirin were so bad that I am still, a month later, being investigated for violation of the State Employee drug policy. (Being under the influence of any medication, in this case Ribavirin, that may impact job performance), so I will see where that ends up in the near future.

Worst case scenario: I am virus free and lose my job, but as of 5/31/15, I qualify for my pension. If I lose my medical, I will just apply for Medicare through my current employer to finish treatment and take my SS and pension until I find another job.
Title: Re: Harvoni Side effects
Post by: ponygirl on June 04, 2015, 09:52:19 am
PS. It did not make ay difference if I take the Harvoni in the am or pm, I still wake up frequently at night and sometimes can't sleep at all. And have weird dreams. Like tonight...been up all night. Not very healthy for an old lady.
Title: Re: Harvoni Side effects
Post by: 2rivers on June 04, 2015, 10:46:01 am
Quote
2rivers:  You might want to check with Gilead as several have gotten help with their treatments through them.  Doesn't hurt to check.  Good luck to you and glad to hear things are going well.

Katie
Thanks Katie. Just to let you know, Momentum Insurance is actually Gilead (their insurance arm) and they are covering 20% of my final 4 weeks. My provincial pharmacare plan covers the first 8 weeks, but I had to pay a $10k deductible. Still well worth it, and less than half the cost if I would have had to pay the whole thing out-of-pocket. 
Title: Re: Harvoni Side effects
Post by: 2rivers on June 04, 2015, 10:51:01 am
Quote
For those who have been following my posts; The Ribavirin side effects were so bad that I had severe depressive symptoms, dry mouth, cough, erratic heart beats on a daily basis.. I had to take off work for a week to get those symptoms under control by decreasing and then stopping the Ribavirin.
Hi Ponygirl. I'm just curious - why did you have to take the Ribaviran in addition to the Harvoni? Sorry to hear about the nasty side fx.
Title: Re: Harvoni Side effects
Post by: housefire on June 04, 2015, 04:25:20 pm
Hi everyone. This is my first post. I started Harvoni 4 days ago. Minor side effects at this point. Mostly a chemical taste in my mouth. Some body aches, but no big deal. Advil knocks it out.  I'm 65 and have had the Dragon for about 44 years. VL is 900K. Fibrosis F4. I hope as my body adjusts to the Harvoni, the side effects go away. Thanks for letting me chime in. Any thought. Please advise...
Title: Re: Harvoni Side effects
Post by: ponygirl on June 05, 2015, 04:53:49 am
2 rvers; 12 week Harvoni and Ribavirin OR 24 weeks of Harvoni only are the recommended TX for those of us who are non-responders to previous meds and have bridging fibrosis or cirrhosis. It costs the insurance companies about $90 thousand  less to do the 12 week combination instead of 24 weeks of Harvoni. But the Ribavirin has multiple side effects.
Title: Re: Harvoni Side effects
Post by: Lynn K on June 05, 2015, 05:06:31 am
I had 24 weeks of Harvoni and we added later 15 weeks of Ribavirin but I am a difficult case. Waiting for my 4 week post treatment viral load for treatment number 5 hoping this one did the job.
Title: Re: Harvoni Side effects
Post by: 2rivers on June 05, 2015, 12:54:19 pm
Quote
2 rvers; 12 week Harvoni and Ribavirin OR 24 weeks of Harvoni only are the recommended TX for those of us who are non-responders to previous meds and have bridging fibrosis or cirrhosis. It costs the insurance companies about $90 thousand  less to do the 12 week combination instead of 24 weeks of Harvoni. But the Ribavirin has multiple side effects.
Ok, I see. Ribavirin is added for treatment non-responders. This is my first kick at treatment, hence the 12-week prescription for Harvoni alone. Here's hoping that this time the treatment will work for you.
Title: Re: Harvoni Side effects
Post by: Kelley on June 05, 2015, 02:13:09 pm
On week 5 of 12 weeks treatment. Previous non responder to Interferon/Ribivarin. Still having fatigue, light nausea and some dizziness--like motion sickness, but had blood work done at 4 weeks and just found out today the Hep C virus is NOT detected. Continuing through the 12 weeks and then test again and at 24 weeks. This is a miracle and almost unbelievable !!!!!! Feeling very grateful and blessed today!!!!! Hope everyone is doing well!!!!
Title: Re: Harvoni Side effects
Post by: NYC10002 on June 05, 2015, 04:55:16 pm
Hey all: I got my first blood test results yesterday and they came back undetectable. Unbelievable! I am over the moon. The blood was drawn after about 2 weeks of Harvoni. The fatigue and fogginess is still hitting me although it comes and goes. Been drinking a lot of water. Good luck to everyone. 9 weeks to go.
Title: Re: Harvoni Side effects
Post by: joelyzabeth on June 05, 2015, 11:28:19 pm
Good Evening everyone!
Tomorrow I will be finishing up my first month on Harvoni.
Had my labs done on June 2 and hoping for positive results. I've had a hard time with drinking so much water but I think it's because it makes me go to the bathroom so much, especially at night.
I'm still dealing with slight nausea in the morning but I take my Reglan and that helps pretty quickly. I'm having energy issues I can go from full fledged ready to take on the world mode and then in  .05 seconds I can't wait to get in my bed. That's what is driving me more crazy then anything. I haven't had many body aches  lately and no headaches since I started Harvoni and I am a headache sufferer. So I am thanking my lucky stars with that issue. I get light headedness here and there but I think it has to do with my lack of appetite here and there. I do eat but sometimes I find it difficult. I take my Harvoni at 8am in the morning with no food as instructed by my doctor. I'm thinking maybe I should switch it to the evening. Maybe that might reduce some of the sx.

I take sleeping pills to help me sleep but I had that issue before Harvoni. It's good to see everyone getting through their regimine of Harvoni to get the end of the rainbow of success. And for those of you who have finished I congratulate you in your  completion,  you so rock!

For those of us making it day by day I am glad to have this support system to help me through it as I struggle everyday and I know I am not alone.

Through the Grace of God we will see this through the end together.

Happy healing as we pursue the  cure!

Have a good night.

J~   8)
Title: Re: Harvoni Side effects
Post by: ponygirl on June 06, 2015, 07:31:29 am
Kelly, Me too. Previous non-responder with cirrhosis and undetectable a 12 weeks. WHOOP. I found out 2 hrs before my 65th birthday. 12 weeks left!!!!!
Title: Re: Harvoni Side effects
Post by: NYC10002 on June 06, 2015, 07:37:52 am
Jolelybeth: I can so relate to the feeling good and then feeling like I need to lay down on the sidewalk and go to sleep right then and there. I am finishing up my 3rd week and actually last evening I felt pretty strong all evening. My hope is that this is a trend that will continue...fingers crossed. I'm also wondering if going to the gym is helping me to feel more awake and clearer. I've been suffering through fogginess with the fatigue. On the upside, I am so grateful that my tests came back undetectable. I am learning to push through the fatigue, not quite used to that yet.

You are a third done and soon you'll be half done and hopefully it'll all be downhill from there. Later this summer this will all be behind us and like I'm telling all my friends, I'll be doing an Irish jig to honor my Irish ancestors.

Have a great Saturday,
NYC
Title: Re: Harvoni Side effects
Post by: joelyzabeth on June 06, 2015, 08:19:54 am
Jolelybeth: I can so relate to the feeling good and then feeling like I need to lay down on the sidewalk and go to sleep right then and there. I am finishing up my 3rd week and actually last evening I felt pretty strong all evening. My hope is that this is a trend that will continue...fingers crossed. I'm also wondering if going to the gym is helping me to feel more awake and clearer. I've been suffering through fogginess with the fatigue. On the upside, I am so grateful that my tests came back undetectable. I am learning to push through the fatigue, not quite used to that yet.

You are a third done and soon you'll be half done and hopefully it'll all be downhill from there. Later this summer this will all be behind us and like I'm telling all my friends, I'll be doing an Irish jig to honor my Irish ancestors.

Have a great Saturday,
NYC

NYC I would love to go to the gym to work out. I just feel it might deplete what energy I do have.  I know I'm  1/3rd there as my doctor just told me, lol. Are you sure you two don't know each other NYC? Lol. You said exactly what she said word  for word.  Looking forward to doing that Irish jig with  ya NYC.

Fatigue is also another issue I fight with from time to time. Nit as bad as it was when I first started Harvoni but yesterday I was really tired after feeling I could do laundry and gardening then just lost my zap. Today I feel tired but it could be the rain but I gotta get moving today as I'm leaving for Virginia tomorrow and haven't even packed a toothbrush as of yet. I got a feeling going out of town for a few days will do me some good. Get out of the city surroundings and into some fresh country air.

I think I've written enough (my pain killer for my back kicked in)  ;D

Glad to continue making new friends.

J~   8)
Title: Re: Harvoni Side effects
Post by: joelyzabeth on June 06, 2015, 08:28:32 am
All is well here! I got my garden and sailboat going and have been enjoying the spring. I go this friday for labs and about 2 weeks after EOT.

I have a lot of energy and have been very productive. I have to build a new paver wall around the roses by the gazebo in the pic below and that will be my last gardening project for the year.  I have a second sailboat I bought as an investment and will do repairs on it so I can sell it.

I hope everyone does well and was sad to hear that migraines had stopped someones treatment.  I did not have any new side effects resulting from this treatment.

(https://farm9.staticflickr.com/8889/18423886362_ef327e2b1a_z_d.jpg)
(https://farm1.staticflickr.com/463/18350213191_e82fb6330d_z_d.jpg)


Sunisout all I wanna say is I want to be just like you when I grow up! I am so loving the yard and hope I could get mine even remotely like that!  Keep on pushing through.

J~   8)
Title: Re: Harvoni Side effects
Post by: KC on June 06, 2015, 09:56:02 am
Good to hear everyone is doing ok with the side effects. I have 3 more days and looking forward to being done with the Harvoni. I have to say that "overall" I did pretty well except for about week 9 of the 12. I had a lot of side effects that week and it really brought me down. I do not know why except my doc says that is normal. The best thing I can offer is drink your WATER!!!!!! In my eyes that is the best thing to do for minimizing the sides.

I am feeling absolutely wonderful again this week. I have not suffered very much from fatigue, I have been just the opposite, full of energy and hyped (to the point of being on edge sometimes). I take my Harvoni before going to bed and I really believe that might help ward off some of those side effects as well. I know that I won't really know the true results until Sept. but my hopes are very high in beating this monster. As I keep saying "the waiting is the hardest part". I wish everyone the best, keep on keepin on....  8)

KC
Title: Re: Harvoni Side effects
Post by: housefire on June 07, 2015, 07:12:27 am
Hi everyone. This is my first post. I started Harvoni 4 days ago. Minor side effects at this point. Mostly a chemical taste in my mouth. Some body aches, but no big deal. Advil knocks it out.  I'm 65 and have had the Dragon for about 44 years. VL is 900K. Fibrosis F4. I hope as my body adjusts to the Harvoni, the side effects go away. Thanks for letting me chime in. Any thought. Please advise...
Title: Re: Harvoni Side effects
Post by: housefire on June 07, 2015, 07:23:34 am
Update: On day 7 of Harvoni. The only side effect I have is the chemical taste in my mouth. Is anyone else experiencing this? Thanks...
Title: Re: Harvoni Side effects
Post by: KC on June 07, 2015, 09:31:18 am
I have tasted it a few times but it goes away. I know it is nasty though. Be sure to drink your water!  :)

KC
Title: Re: Harvoni Side effects
Post by: housefire on June 07, 2015, 10:03:42 am
Thanks KC. I'm just trying to find the chicken that pooped in my mouth. He must be running around here somewhere.
Title: Re: Harvoni Side effects
Post by: Cute on June 08, 2015, 06:38:43 am
Hi all,

Today, I have received mother's 10 week blood work. So, ALT is still OK. But AST a little bit elevated and equals 37 (the norm is 14-36).
AST, the Platelet count, Insulin and Albumin, all of them, are worrying me. Albumin remains stable, but out of the norm. The Platelet count is going down. After 8 week it was 100 (the norm 130 - 400), now (10w) is 90.
I asked doctor about all of them. He said me that the results is quite ok. But I am concerned. Seems 10w results worse than 8w. We are on the 12 week of treatment, so we are very close to the end of the treatment. That is why, the questions and doubts are killing me.
Is Harvoni doing its job well?
Are those figures could be sign of virus resistance?
What will be the end of treatment virus load?
Doctor is relaxed, but I am not. At the same time, mother has no complains, says that feels herself better than before.
 
Title: Re: Harvoni Side effects
Post by: concerned father on June 08, 2015, 08:38:54 am
What is her viral load now? undetected?
Title: Re: Harvoni Side effects
Post by: Cute on June 08, 2015, 09:05:44 am
after 4 weeks it was <0.010 KIU/ml
next virus load test will be EOT (12 week).
Title: Re: Harvoni Side effects
Post by: Lynn K on June 08, 2015, 10:41:53 pm
My platelet count has been between 80 and 90 for at least 5 years now which for me is due to my cirrhosis.

They don't get worried till below 50 if I remember correctly ant at 30 they will do transfusion to increase platelet count.

Ninety is not great but not worrisome just yet.

Good luck to you both
Title: Re: Harvoni Side effects
Post by: KC on June 08, 2015, 11:44:48 pm
Hi Lynn.

 Your numbers are looking pretty good after tx. How are you feeling these days?

KC
Title: Re: Harvoni Side effects
Post by: Lynn K on June 09, 2015, 12:35:13 am
Same as always just not anemic from the Ribavirin anymore so I feel better there

Otherwise still the general tired I have felt for years just keep on trucking
Title: Re: Harvoni Side effects
Post by: KC on June 09, 2015, 12:40:28 am
Lynn,

I'm sorry to hear you're not up to par yet. Keep us posted as time goes by. Hope you feel better soon!

KC
Title: Re: Harvoni Side effects
Post by: Lynn K on June 09, 2015, 01:41:06 am
I am fine I have been a bit tired for a long time it isn't really an issue for me.

I work full time, occasional overtime, I have a part time job, hobbies, and mow my lawn. I just keep on keeping on, one foot in front of the other. Life is too short so gotta keep on moving.

The tiredness is either because I am 57 years old or from the cirrhosis so nothing to be done except to live with it. I am as up to par as I ever expect to be.

My goal in treating was to live a normal life span, which unless I cured hep c was looking like it would not happen.

In health
Title: Re: Harvoni Side effects
Post by: Katie on June 09, 2015, 01:47:19 am
Hi Lynn...I know you are going to feel improvements, it will just take awhile.  57 is young, my dear, and your fatigue is not due to age.  I can't wait to talk to you in a year or so.  I bet we will both have really good news to report!

Katie
Title: Re: Harvoni Side effects
Post by: KC on June 09, 2015, 09:29:21 am
I'm going to have to agree with Katie on this one Lynn. Keep on keeping on, one day at a time!

Katie, I hope you are feeling better as well.  8)
Title: Re: Harvoni Side effects
Post by: rchiocchio on June 09, 2015, 09:32:40 am
Hello all, new around here  :)

29 years old, with Hep C Genotype 1A. Not 100% sure of my numbers right now, do not have my paperwork in front of me. I want to say my recent blood work had my viral load was around 2 million, but don't quote me on that one. I got hep c in '86 through the 40+ blood transfusions I received as a newborn. Got a whole slew of medical issues on top of this one, though I am lucky to not currently be sick from the hep c itself. Got a letter in the mail in my teens from the hospital saying that I may have gotten hep c, and have been seeing doctors ever since. A few weeks ago I was (finally) approved for 12 week Harvoni treatment. I have not been through any previous treatments as every time my doctor wanted to start one, something had come up that prevented me from doing so.

Tomorrow will be the end of the first week for me, and I have been feeling pretty good for the most part. Had one night so far where I was just completely out of it and wanted to do nothing but crash out on the couch. Another day where a headache came on randomly and needed to take something for it / rest. Some mornings I feel like I'm in a fog and it takes a while to get out of it.

One BIG thing I have noticed, that I have not seen listed anywhere as a side effect, is that my sense of taste has definitely changed. It's not EVERYTHING, but most things I have noticed are off. I wouldn't identify it as a metallic taste, but things definitely taste *different*. Had to ask my girlfriend a few times if stuff I was eating tasted odd, and in the end just chalked it up to a side effect of the medicine. Nothing tastes bad, so I haven't lost my appetite yet.

Hoping this is all I experience over the next 12 weeks, but we'll see what happens. I've been through worse; but so far I can't complain  8).

Ryan
Title: Re: Harvoni Side effects
Post by: KC on June 09, 2015, 10:17:22 am
Hi Ryan,

Welcome to the forum. You will be glad you found it, lots of good encouraging advice here.

I am taking my last Harvoni today! I was on the 12 week treatment program and looking forward to finishing it up. My experience with the drug has not been to bad. I had one bad week (week 9) where I had lots of side effects but the rest of the weeks I can say I felt pretty good. I was starting to be ill from the hep so I entered treatment. Everyone is different, I have found that I have extremely more energy to the point of insomnia and sometimes a bit of anxiety. I still felt better and hope that I have concord this disease. The best thing I can offer to you is be sure to drink LOTS OF WATER! Drink it all day and drink some more. I really believe that has kept my side effects down while flushing out the virus.

Be happy you have this precious drug at the age of 29. You are very lucky that you have an opportunity to be rid of this monster. Take care & good luck!   8)
Title: Re: Harvoni Side effects
Post by: concerned father on June 09, 2015, 10:53:22 am
Ryan, please keep us informed.  Just like you, my daughter has been infected since birth.  She is now 20 years old and will start treatment in late August.
Title: Re: Harvoni Side effects
Post by: lolacme on June 09, 2015, 02:56:06 pm
I am getting ready to start Harvoni and I cannot seem to find a lot of information on whether or not people worked while on Harvoni. I am 46 years old and I am a full time college student. I am wondering do any of you think I will be able to start my fall semester. When does the fatigue peak after taking Harvoni. Should I take it before or after school? What helped with your insomnia?
Title: Re: Harvoni Side effects
Post by: Katie on June 09, 2015, 03:15:20 pm
Hi Lola,  Everyone is a bit different but many have continued working.  I actually had more energy while taking Harvoni and have more fatigue now that I am finished with a successful treatment.  I had horrible chronic insomnia for at least 5 years.  I was like a walking zombie.  Within the first week of taking Harvoni I started sleeping through the night and getting at least 5-7 hours and I started dreaming again.  I am now sleeping a good solid 8 hours and sometime more.  I have noticed so many improvements and the best is getting rid of the brain fog I had for over a decade which progressed and was difficult for the supervisory position and data analysis I did.  I finally retired, and now my brain is sharp again.  I took my medication at night and it's important to take it the same time every day.  Others take it in the morning so I don't know which is best for you.

Like I said, Harvoni affects everyone differently and I am sure it depends on your other health issues.  I wish you success in the treatment and you'll find this forum very beneficial.  Be good to yourself, eat well, drink LOTS of water and eliminate all stressful situations and you should do fine.

Katie
Title: Re: Harvoni Side effects
Post by: hope4cure on June 09, 2015, 03:40:32 pm
Hello Lolacme,

Everyone will experience different side effects with the most common being headache and fatigue. Many people have no side effects at all. I had fatigue through most of my 8 week treatment. I took each pill at 7:00 am and by around 12:00 in the afternoon I started to feel the fatigue. Sometimes not too bad and others, I would be down right drained. I would recommend taking the pill before bed since it can cause fatigue. Many people also experience "brain fog". I had this happen to me for a few days when I started the meds and a few times though out my treatment. This could make studying a challenge if it happens.

One thing I did notice was moving around and working seemed to help reduce my fatigue. The days I did not work, I would always fall asleep for a couple of hour right after lunch without fail.

Good luck to you!

P.S. I go in for my post 12 week lab test this Friday. So far all tests have showed undetected. Hopefully by next Thursday or Friday I get the great news we are all hoping for.
Title: Re: Harvoni Side effects
Post by: sisterbland on June 09, 2015, 08:42:35 pm
These last few weeks have been tough on me with some side effects, maybe some general depression/frustration/feeling isolated that we all, no doubt, deal with fighting this virus.

I have two pills left to finish my 12 week tx on Harvoni and have used this forum heavily and it has helped to read what others have experienced. I also work a full-time, high stress job and do not post often.

Reaching out is not always easy but I am asking for someone to respond to my post, acknowledge that I am a on this dragon-slaying team too.

Just having a bad few days, I'm sure it will pass...
Title: Re: Harvoni Side effects
Post by: Katie on June 09, 2015, 10:09:13 pm
Hi SIS...You are definitely on our team and you're on the home stretch!  Congratulations! 

It is a difficult, emotional time for all of us but you are a strong responder and should do fine.  It seems many of us are having some issues after the treatment ends as well, however it seems everything improves about 16 weeks post so don't get down if you still feel fatigued for awhile.  Many are doing just fine after they have treated and cleared so you may breeze through it. 

If you feel down and depressed just remind yourself why...it isn't your norm just the medication.  I found the more I did to keep busy and active, even if I had to push myself, the better I did.  I am very grateful I went into retirement in 2013 so I could listen to my body and do what it needed.  It would have been difficult had I been working to keep up the front and get there on time as my mornings were always slow to start.  You've done really well!  Be proud of yourself!

Keep us posted and I'll be waiting to do my Happy Dance for you.  My dancing shoes are polished and ready to go!

Katie
Title: Re: Harvoni Side effects
Post by: KC on June 09, 2015, 10:43:10 pm
Hey Sister.... What Katie said!  ;D  Chin up girl you are one day behind me. I am about to take my last Harvoni in one hour!!!!!! You sound like you are having a week like my week #9 was. It will pass, I promise. I came out of it as fast as I went into it. Just take one hour at a time if that is what ya need to do but don't give up the ship. You are at the finishing line girl. I am so sorry your having a tough time but we are all different and ya never know what to expect. Right now I hope you can look up and think about having the God awful monster out of your body!

Keep in touch and let us know your progress and I will do the same. Hey, we are pretty much on the same page at this point. Take care & smile!
Title: Re: Harvoni Side effects
Post by: sisterbland on June 10, 2015, 07:57:10 am
Thank you so much Katie and KC for the encouragement and kind words!!!
Title: Re: Harvoni Side effects
Post by: KC on June 10, 2015, 08:08:35 am
I sent you a personal message after receiving yours. Hope you got it. Also, hope you're feeling better today! Your last day of Harvoni!!!!   8)
Title: Re: Harvoni Side effects
Post by: rchiocchio on June 10, 2015, 09:11:56 am
Ryan, please keep us informed.  Just like you, my daughter has been infected since birth.  She is now 20 years old and will start treatment in late August.

I certainly will. So far the side effects have been some fatigue and headaches; if anything changes there I'll be sure to post. I'll definitely update again after my first test with my numbers.
Title: Re: Harvoni Side effects
Post by: CHepCFree on June 10, 2015, 09:37:22 am
I am so happy for those who have made in through with no side effects.   Unfortunately there are some of us who have been damaged and now have decreased quality of life.   I have started a closed Facebook (FB) page entitled Damaged by Harvoni for those who have completed Harvoni and are having remaining or new side effects that have limited their daily life ability or have decreased there quality of life.   If you are such a person and interested in the FB, please search for it and send a request to be added to this closed group.   
Title: Re: Harvoni Side effects
Post by: concerned father on June 10, 2015, 10:00:10 am
Did you take precautions like changing your tooth brush and razor on regular basis.
Title: Re: Harvoni Side effects
Post by: SunIsOut on June 10, 2015, 03:11:31 pm
Hello Everyone,

My 12 week EOT came back with good results and still undetectable. My platelets are still low 59.  My energy is really good but the tinnitus is excruciating and constant all day long.  I set up an appointment as my doctors have encouraged me to do.

I shared with my employer that I was going to go through this treatment and was not sure if I would have side effects.  I had finished a 5 year project and was going to need to transfer to a different company or different business unit as they do not use my skills on an everyday basis. I needed to stay where I was as I had the sick time if I needed it.

So I got laid off 2 weeks ago and I had been rated a 2 for each performance year where 1 is the highest rating.  I was very surprised as I did not think that would happen.

Now I have to sign for a severance package and give up any disability insurance or fight it.  The problem is if I accept the severance then get a relapse, plus this tinnitus being so bothersome that I will be be boxed in a corner with no insurance and no disability if the tinnitus does not get better.

I for one of the very first times in my life do not know what to do!

Sometimes America can really be disappointing.
Title: Re: Harvoni Side effects
Post by: Wilson on June 10, 2015, 09:13:50 pm
Just went today, 4 months and 15 days post treatment. Took my blood test. I am positive I am clear.  I wish everyone hear the best I hope you all live long and play hard.

Wilson
Title: Re: Harvoni Side effects
Post by: tecgirlrn on June 11, 2015, 01:12:01 am
I've got 3 weeks left on Harvoni.

For approx 3 yrs prior to Harvoni, I struggled with fatigue, nausea, diarrhea and joint pain. Prior to treatment I was Stage 3, grade 2-3. I was infected 36 years ago at age 2 post vaccine. I have been waiting years for a treatment that didn't require interferon or ribavirin.

My heart goes out to the folks with major side effects. For me I had severe anxiety and restlessness the first 3 days, I literally could not sit still. On day 4 the symptoms subsided and I noticed I was VERY thirsty. IN fact nothing seems to quench my thirst except water with A LOT of lemon juice added. I get headaches if I don't drink enough fluids, I have not had other symptoms. I take my pill each day at 1230 after I eat.

@lolacme I have been able to work the entire time on this medication, I am nurse and have worked as much as 40-50 hrs a week. I also have been able to work out 3-4 times a week, in fact most people who know have mentioned that I seem to have more energy. After reading the Harvoni medication information I was worried I would have debilitating symptoms.

I had read the forums prior to starting Harvoni, each week I have thrown out my toothbrush and razors. I just threw out all my makeup and brushes (the virus probably didn't get on them, but it doesn't cost much for peace of mind).

On day 28 my first Viral Load test came back undetected, likewise the second test.

For those who have not had success, please do not give up hope. I have read there is another medication likely to be approved next year.
Title: Re: Harvoni Side effects
Post by: hepcsincebirth on June 11, 2015, 11:23:35 am
I would not share treatment status with my employer. So far the side effects with harvoni for most people have been mild, but the stigma and ignorance of hcv is widespread. If you do have symptoms, you can always blame it on the flu, overworking, etc. Most coworkers/employers know the feeling and wouldn't give it a second thought.

In terms of side effects, other than fatigue and headache (which are listed in the documentation) other side effects seem almost random. There is no doubt that side effects exist, but no medication is perfect and the chance to clear hcv far outweighs the side effects for most people. A very small number of those taking harvoni will experience long term side effects, but these pale in comparison to the side effects (both short and long term,) of interferon and ribavirin.

In harvoni, researchers found a combination of drugs that worked, with fewer side effects than in the past, and the marketers went to work selling it to the public. Drug companies always understate the side effects, otherwise no one would take the medications unless they were in a life or death situation. For most people (90%), harvoni is a cure (as currently described,) but out of the hundreds of thousands taking it, 10% or so will not be cured. 10% of 100,000 is 10,000, which is a lot of people for whom harvoni will fail, but it is still much better than any treatment before it.

The funny thing about hcv is the replication cycle within the liver is still not 100% understood. Researchers take a calculated guess, go into trials, and see what works. So far, this is the best they have found.

Please remember, this is a side effects blog. Most people post negative experiences and very few post positive ones. If you could force everyone on Harvoni to post their experience, this thread would be much more upbeat.

Good luck to all on Harvoni.
Title: Re: Harvoni Side effects
Post by: hepcsincebirth on June 11, 2015, 11:29:08 am
I am now 2.5 weeks post EOT and don't notice much difference from when I was on treatment. The only change I can tell is there is a little less fatigue in the evening, and I am not nearly as thirsty as I was on treatment. The slight sunburn feeling around the eyes and cheeks that I occasionally had on treatment is also gone.
Title: Re: Harvoni Side effects
Post by: 2rivers on June 11, 2015, 11:49:01 am
I'm at 18 days now in a 12-week treatment. So far I've only had one bad day (around the 10th day of Harvoni) - felt like I got run over by a truck, but it passed by the next day. I wouldn't say I'm 100%, but my energy levels are at least 90%. I've been playing tennis 5 times a week, biking, and doing a lot of very heavy yard work and landscaping.

Of course I've been pounding back the water, and have not noticed any other side effects aside from a slight "iron" taste from the water. No headaches, no sun rash, nothing. I realize that this could change in the future, but so far so good. I feel badly for those of you who are experiencing nasty side effects. All I can say is hang in there because the cure is worth it.
Title: Re: Harvoni Side effects
Post by: KC on June 11, 2015, 02:14:49 pm
I would NEVER share anything about my Hep C with my employer. It is nobody's business. I had an eye doctor refuse to treat me because he thought he or his staff might catch it by my tears. I was humiliated the way he treated me. The stigma and ignorance that comes with this disease is huge.
Title: Re: Harvoni Side effects
Post by: KimInTheForest on June 11, 2015, 02:48:51 pm
I would NEVER share anything about my Hep C with my employer. It is nobody's business. I had an eye doctor refuse to treat me because he thought he or his staff might catch it by my tears. I was humiliated the way he treated me. The stigma and ignorance that comes with this disease is huge.

I agree with KC. I once told a dental hygienist when I was in for a teeth cleaning. He spent the entire hour asking me "Aren't you afraid you are going to die of liver cancer?" while I was essentially a hostage in the chair with my mouth open. Another time I told a dental assistant taking x-rays. After she moved the x-ray machine's plastic cone away from my cheek, she scrubbed it down vigorously with Lysol. Those were both early experiences - within 1st year of my being diagnosed in 1995. I quickly learned that the vast majority of people are just too ignorant and misinformed to be trusted with this information. So for my own health, happiness and survival, I have told virtually no one (apart from those two dufuses) in the past 20 years.

I plan to out myself and do some advocacy work once I can say: "I had Hepatitis C. I don't have Hepatitis C." Too bad it has to be that way. But non-disclosure in the face of such widespread public ignorance and stigma is actually the self-honouring choice. I consider it a sign of empowerment that I am putting my right to survive and be happy ahead of other people's non-need to know information they cannot handle.

wellness to all,
kim
Title: Re: Harvoni Side effects
Post by: sjking on June 11, 2015, 03:11:47 pm
Hello Everyone,

Tomorrow I will have been on Harvoni for two weeks.  I can't honestly say I've noticed any difference in my day to day life.  I take it in the morning and was so worried about side effects that I drank a half a gallon of water a day. My theory was that the water would help and then I wouldn't have to worry about insomnia at night.  Some days I didn't drink so much water and felt no different.  The only for sure thing that happened so far was I was extremely emotional for a day.  I had a 1.5 million viral load with no liver damage so maybe that's why I don't have many or any side effects so far.   

I just read another person's comment about changing tooth brushes and razors.  Do you really think the study participants all did that?  I don't, but just in case I just threw them all out.
Title: Re: Harvoni Side effects
Post by: SunIsOut on June 11, 2015, 04:29:50 pm
I agree with KC. I once told a dental hygienist when I was in for a teeth cleaning. He spent the entire hour asking me "Aren't you afraid you are going to die of liver cancer?" while I was essentially a hostage in the chair with my mouth open. Another time I told a dental assistant taking x-rays. After she moved the x-ray machine's plastic cone away from my cheek, she scrubbed it down vigorously with Lysol. Those were both early experiences - within 1st year of my being diagnosed in 1995. I quickly learned that the vast majority of people are just too ignorant and misinformed to be trusted with this information. So for my own health, happiness and survival, I have told virtually no one (apart from those two dufuses) in the past 20 years.

I plan to out myself and do some advocacy work once I can say: "I had Hepatitis C. I don't have Hepatitis C." Too bad it has to be that way. But non-disclosure in the face of such widespread public ignorance and stigma is actually the self-honouring choice. I consider it a sign of empowerment that I am putting my right to survive and be happy ahead of other people's non-need to know information they cannot handle.

wellness to all,
kim

I did not tell them what I had just that that it was a new treatment. In hindsight should have just kept it quiet.
Title: Re: Harvoni Side effects
Post by: housefire on June 12, 2015, 07:01:50 am
Update:
On day 12 with Harvoni. No more side effects at all. It seems I have more energy then I've had in years. Is it just in my head? Don't know and don't care.  8)
Title: Re: Harvoni Side effects
Post by: Debula on June 12, 2015, 10:41:55 am
Quote from: CHepCFree
 link=topic=1653.msg23183#msg23183 date=1433943442
I am so happy for those who have made in through with no side effects.   Unfortunately there are some of us who have been damaged and now have decreased quality of life.   I have started a closed Facebook (FB) page entitled Damaged by Harvoni for those who have completed Harvoni and are having remaining or new side effects that have limited their daily life ability or have decreased there quality of life.   If you are such a person and interested in the FB, please search for it and send a request to be added to this closed group.

Hi CHepCFree
I am wondering how you know that it is the Harvoni that has caused your problems

I think I asked you once before but I must have missed the answer.
 I understand that we are all different and react differently to medications but how can you be so sure it is the Harvoni?  I don't mean to sound disrespectful but could it be something else that happened that just coincided with your Harvoni TX?

I feel that Harvoni has helped so many of us (including me) and I have not had any side effects that are not manageable   I felt horrible most days before Harvoni and I feel pretty much the same now.  Except that now I am actually UND so I can only hope that I will start to feel better as my liver starts to improve and function better
I have to also add that I have a thyroid condition that could be causing some of my symptoms such as fatigue body ached etc...   
I guess what I am trying to say is that it may not be Harvoni that caused you to feel bad.  It could be a number of other medical conditions that have just not been identified yet

I hope you start to feel better

Deb
Title: Re: Harvoni Side effects
Post by: pandaman on June 12, 2015, 10:53:44 am
On day 5 of Harvoni. So far I am less fatigued, and I'm aware that I dream all night long. Also, my digestive issues are better then they have been in years.

As of yet, I've not had any negative side effects.

Whether it's the Harvoni or the placebo effect, I'm feeling much more upbeat than I have in a long time.
Title: Re: Harvoni Side effects
Post by: KC on June 12, 2015, 11:55:47 am
I finished my 12 week TX this week. I too felt very energized while taking the Harvoni. Most of my 12 weeks were unremarkable except how great I felt. I did have some insomnia once or twice a week but overall, I felt wonderful.

For some reason week #9 was full of side effects and anxiety. Do remember, everyone is different so all we can do is share what is happening to us as an individual. I believe some get horrible side effects because I experienced it that 1 week. All I can say, as I've said before: DRINK LOTS OF WATER! Flush that virus out of your body!
Title: Re: Harvoni Side effects
Post by: KimInTheForest on June 12, 2015, 12:50:43 pm
Congrats, KC, on finishing your 12-week tx this week! Good luck on the future labs. :)

kim
Title: Re: Harvoni Side effects
Post by: ssalerno1 on June 12, 2015, 01:26:36 pm
Can I use CLA (conjugated linoleic acid) while taking Harvoni?
Title: Re: Harvoni Side effects
Post by: concerned father on June 12, 2015, 02:19:42 pm
You should refer that question to your Doctor.
Title: Re: Harvoni Side effects
Post by: ssalerno1 on June 12, 2015, 02:52:39 pm
I have a call in. thanks. just looking for other experience with Harvoni/CLA if out there
Title: Re: Harvoni Side effects
Post by: Katie on June 12, 2015, 02:58:02 pm
I finished my 12 week TX this week. I too felt very energized while taking the Harvoni. I had some insomnia along the way and week #9 was horrible. I had lots of side effects that came and went in a week - 10 days. I hadn't felt that good (except for #week 9) in years. Everyone is different so all we can do is share what is happening to us as an individual. I believe some get horrible side effects because I experienced it that 1 week. All I can say, as I've said before: DRINK LOTS OF WATER! Flush that virus out of your body!

I experienced the same thing KC.  I had more energy and felt better than I had in YEARS while on treatment, except for week 8 & 9 for about 10 days and then, one morning, I woke up great again.  I miss my orange pill as I am not nearly as energized.  If fact I am fatigued and I am at week 14 post treatment.  I seem to be getting a bit better slowly so as long as I remain Undetected, I believe, little by little I will improve and I am looking forward to that and excited by it. I have another blood draw in 2 weeks and am anxious for to it along with being very confident.

Hope everyone has a great weekend and continues on to a complete cure feeling strong!

Katie
Title: Re: Harvoni Side effects
Post by: Debula on June 12, 2015, 07:07:04 pm
Congratulations on finishing your 12 weeks KC
I WISH YOU EVERLASTING SVR

I just started my 3rd bottle and have 3 more to go and I wish I could say that I feel more energized but I don't.  I feel pretty much the same as before.  Fatigue is a constant with me and I was so hoping I would get some of the energy you all talk about.
I did have severe itching before TX and I am happy to say it is gone!!

I hope you start feeling better Katie it is sad that so many weeks later you are still feeling poorly.

I hope everyone has a great weekend
Title: Re: Harvoni Side effects
Post by: Katie on June 12, 2015, 07:55:50 pm
Thanks Debula.  Actually I shouldn't complain as I feel much better than before treatment with many things improving.  My insomnia and brain fog, which I suffered with for years, are totally gone. I am just weak with no endurance and I have always been a worker, even before treatment.  I am sure it will improve with time and my projects will just have to wait.  I tried to build a nicely done bookcase and ripped down some boards for it but there it sits!  HA!  Certainly not that big of deal, just so unlike me and of course, my beautiful gardens are suffering.  Fortunately my ground cover is abundant too (overgrown) so it is hiding many of the weeds, so there is a silver lining!  Life is good and beautiful and every moment is precious.

Katie
Title: Re: Harvoni for many is not at all difficult to take!
Post by: Mugwump on June 15, 2015, 01:27:14 am
http://forums.hepmag.com/index.php?topic=2853.msg23417#msg23417 (http://forums.hepmag.com/index.php?topic=2853.msg23417#msg23417)

The growing concern about the minor side effects of Harvoni has been blown all out of proportion IMO. We need a way to gain perspective and perhaps to better help others to understand the minor troubles one can run into when taking this medication.

I would ask the moderators to please start a thread which can be some sort of a poll that does not accept comments..... I know A THREAD WITHOUT COMMENTS COMING FROM MUGWUMP hell has frozen over LOL Then perhaps close the side effects threads altogether with redirects to the poll! It is jamming my mail box and I hate missing important posts like the one that I linked to starting this post!!!!!!

The poll would be simple
A check box list of side effects experienced something like this;
This should about cover the number of complaints that some have reported.
To some extent I have experienced some of these symptoms But again nothing I have gone through remotely scared me or caused me to worry about anything other than ridding myself of HCV
ONCE AND FOR ALL

Best wishes
Eric
Title: Re: Harvoni Side effects
Post by: Lynn K on June 15, 2015, 02:26:40 am
Hi Eric

My answer to all is none of the above.

Hum no side effects and cured vs complications of cirrhosis and early death

I think I vote for Harvoni :)
Title: Re: Harvoni Side effects
Post by: TTSP on June 15, 2015, 07:22:12 am
@mugwump

A good start would be for everyone to quit trying to diagnose one another.
 ;D
Title: Re: Harvoni Side effects
Post by: icantwait on June 15, 2015, 08:37:41 am
I just got my 12 post treatment results, undetected!!! Other than a few minor headaches and some lethargy, I had almost no side effects. I had some kidney pain for a couple of days, however that was probably unrelated to the treatment. I felt some guilt for having a self infected disease and it took a month of fighting the insurance to get approved. It is so nice to know that this ticking time bomb is gone. Good luck to all of you.
Title: Re: Harvoni Side effects
Post by: dragonslayer on June 15, 2015, 09:01:11 am
Hi Eric

My answer to all is none of the above.

Hum no side effects and cured vs complications of cirrhosis and early death

I think I vote for Harvoni :)

Ditto! 
Title: Re: Harvoni Side effects
Post by: sjking on June 15, 2015, 09:57:21 am
I agree with Mugwump, the thread scared me and I would hope that nobody is afraid of this medication.  It's nothing like Interferon and Ribavirin  that almost killed me.  It's fantastic! I like the idea of a poll which would help people have a more realistic perspective. We are truly blessed to have it!
Title: Re: Harvoni Side effects
Post by: Mugwump on June 15, 2015, 10:01:36 am
@mugwump

A good start would be for everyone to quit trying to diagnose one another.
 ;D
Right on!!
Mountains and mole hills comes to mind.
Title: Re: Harvoni Side effects
Post by: Bob V on June 15, 2015, 12:20:20 pm
Here's my take on this. Like my profile says I did the orginal Interferon 2x and that almost killed me. This is one reason I refused tx until Harvoni, I was going to pass on S&O too. I never did the Ribavirin/interferon tx so I can't comment on that. But I got a new PCP 2yrs years ago, also new GI guy 1.5 yrs so I knew I was going to have to go through explaining why I refused to treat my HepC. My new GI could not understand why I didn't get on the R&I treatment, his selling point was it was far better tolerated then the old interferon tx. After a couple of visits he when back to the why didn't you treat this. I said doc listen to me if you told me I had only a couple of months to live if I didn't take a drug with Interferon in it I still would not take it. This is just to give people who did the R&I a perspective of where I'm coming from.

I have several family/friends that I've been trying to at least think about treating their HecC since last Oct. All of them did the original Interferon too. Besides the side effects of the treatment was the feeling that they/me were lied to from the docs and drug companies about the effectiveness. We where told take this for 6 months and there's 80% cure rate, total BS. It quickly turned into 1-1.5yrs, not one us got cured.

Now that my brother and I reached SVR 12 I'm starting talking to them about treatment again. I can't say there's no side effects because after week 3 or so I did feel tired and crappy every day. My friends are like me pre tx they feel fine so why treat it. Understand they know the potential issues of not treating their HepC but after 40yrs it kind of a tough sell.

Look don't get me wrong I'm stoked I got cured and I think Harvoni is a wonder drug. I do think they should get on Harvoni but I can't say to them you won't have side effects.
Title: Re: Harvoni Side effects
Post by: dragonslayer on June 15, 2015, 02:49:08 pm
Hey bob,

>>Look don't get me wrong I'm stoked I got cured and I think Harvoni is a wonder drug. I do think they should get on Harvoni but I can't say to them you won't have side effects.<<

No, but you Could say to them that current data shows Harvoni minor side effects effecting less than 20% of those who take it!  etc, etc, etc.
Title: Re: Harvoni Side effects
Post by: hope4cure on June 18, 2015, 10:03:26 am
I Just got the call yesterday and after 8 weeks of Harvoni, then 12 weeks of waiting, I am cured!

My side effects while on the medication were only fatigue. Some days I would not feel tired at all, most days I would little bit tired for an hour or two and some days I would feel really tired for 5 to 6 hours during the day. I always found myself taking a long 2-3 hour afternoon nap during the weekends.

All in all, I have zero complaints and I am so thankful to be cured!

I hope everyone gets to have the feeling I felt when I got the final call. Words can't truly describe it.
Title: Re: Harvoni Side effects
Post by: Bob V on June 18, 2015, 10:13:08 am
hope4cure

CONGRATS!
Title: Re: Harvoni Side effects
Post by: Bob V on June 18, 2015, 10:17:32 am
Paul
I hear you but for people that need to be functioning on a high level being tired might be a deal breaker.
Title: Re: Harvoni Side effects
Post by: KC on June 18, 2015, 11:23:01 am
My doctor tells me it takes a year of "undetected" to say your cured.... I am 1 week done with it and feel fine so far. I was the opposite while on Harvoni, I had so much energy I didn't know what to do with it and couldn't sleep a couple nights out of the week. Who knows? Congrats hope4cure!
Title: Re: Harvoni Side effects
Post by: Karen1124 on June 18, 2015, 11:48:22 am
Congratulations!!!!!  Hopeforacure!!!
I love hearing this news!! Life is good!!!! Karen
Title: Re: Harvoni Side effects
Post by: Mugwump on June 18, 2015, 01:13:17 pm
My doctor tells me it takes a year of "undetected" to say your cured.... I am 1 week done with it and feel fine so far. I was the opposite while on Harvoni, I had so much energy I didn't know what to do with it and couldn't sleep a couple nights out of the week. Who knows? Congrats hope4cure!
To clarify the relapse rate after 12 weeks goes down considerably. Therefore 24 week is considered svr functional cure. I do not know if there are any recorded post 24 week svr relapses reported. Perhaps future data might be corrupted by re-infects happening for reasons like continued drug use with an infected partner and similar statistical anomalies. So it will take a while to be certain that 24 week svr is a full cure for all who do not have a high re-infect risk through their life choices.

I can readily understand why a GI or GP would be cautious about declaring "cured" at 24 week svr until the drug has been around for a few years.

KC I fully understand your doubts and know that you need a way to dismiss them.

Best wishes to you and FYI my weakness post treatment is letting up, the muscle weakness and other slight issues that were caused by treatment are all fading. My stamina is back to the point where I can and did row across several kilometers of a lake against a very stiff wind and driving rain! AND STILL fish all day without a care in the world!
Harvoni is a miracle and we are truly blessed to have lived long enough to see this wonder of science and human care happen.

Bless all.

Eric
Title: Re: Harvoni Side effects
Post by: Debula on June 18, 2015, 04:46:12 pm
Hope4cure 

CONGRATULATIONS!!!

I hope to get there one day!
Title: Re: Harvoni Side effects
Post by: KC on June 18, 2015, 05:36:00 pm
To clarify the relapse rate after 12 weeks goes down considerably. Therefore 24 week is considered svr functional cure. I do not know if there are any recorded post 24 week svr relapses reported. Perhaps future data might be corrupted by re-infects happening for reasons like continued drug use with an infected partner and similar statistical anomalies. So it will take a while to be certain that 24 week svr is a full cure for all who do not have a high re-infect risk through their life choices.

I can readily understand why a GI or GP would be cautious about declaring "cured" at 24 week svr until the drug has been around for a few years.

KC I fully understand your doubts and know that you need a way to dismiss them.

Best wishes to you and FYI my weakness post treatment is letting up, the muscle weakness and other slight issues that were caused by treatment are all fading. My stamina is back to the point where I can and did row across several kilometers of a lake against a very stiff wind and driving rain! AND STILL fish all day without a care in the world!
Harvoni is a miracle and we are truly blessed to have lived long enough to see this wonder of science and human care happen.

Bless all.

Eric
Title: Re: Harvoni Side effects
Post by: KC on June 18, 2015, 05:46:39 pm
Hi Eric,

I don't know why my Dr. told me it would take a year of being undetected. He is an infectious disease doc and he runs a Hepatitis C clinic the only one in Fla. He just told me that on my last visit, I thought it was 12 weeks also. Again, who knows we are beginners.

I am feeling very good as well and I am only a week and a day done with Harvoni. I was just saying yesterday that my aches and pains (bone & muscles) have all pretty much subsided. I had some of that prior but now that I'm off the Harvoni, it is much better. SO, here again "the waiting is the hardest part." I try not to think about it and go on with life. If I don't clear, the doc says there is something else new. Not that I would jump into it but that's good to know.

I am so happy to hear that you are doing so well, keep up the good work and I hope you catch lots of fish!!!!  8)
Title: Re: Harvoni Side effects
Post by: lolacme on June 21, 2015, 08:21:14 pm
Been on Harvoni 9 days. Trouble with constipation. No diarrhea at all. I feel really bloated.  :(
Title: Re: Harvoni Side effects
Post by: jberlin on June 21, 2015, 09:17:49 pm
lolacme, good luck and wishing you SVR!  And yes, the school of thought is if you are still virus undetected after 12 weeks post treatment, you are considered cured.  The old CDC rule was 24 weeks, not sure it was ever 52, but maybe, but if UD at 12 weeks post treatment, let go a yell! -jack
Title: Re: Harvoni Side effects
Post by: nadewitt on June 23, 2015, 08:55:58 am
I woke up a couple of weeks ago with 2 itchy bumps that I assumed were bug bites. Every day sees more of these bumps appearing and they are very annoying. It is not like the horrible itchy rash I developed in previous treatments but I am wondering if this is a side effect of Harvoni. If it is bug bites, I don't know where they are coming from and my husband hasn't been affected. I don't spend any time out doors, just home, work and back home. Has anyone else experienced this?

Also, many of you posted that you couldn't bring yourself to throw away the pill bottles that your medicine came in. I finally found something very useful to do with mine. I heard about a blind man in my community that collects and cleans old prescription bottles. When he has gathered enough, he sends them to Africa to be used there. In lots of places there when the people are given pills, they have to find their own container to put them in. The old used and cleaned pill bottles are recycled and put to good use.
Title: Re: Harvoni Side effects
Post by: jberlin on June 23, 2015, 09:27:20 am
nadewitt,

The answer is always "it could be, please see your health care specialist". One thing we have learned across all the treatments here, is no 2 people seem to be affected the same way, while many similarities we all seem to manifest our bodies' dislike of these drugs in strange ways.  I remember being put on a daily anti-histamine and being told to be generous on my application of hydrocortisone cream on my various rashes to stop the itching.  Let us know if you learn more. 

Interesting idea on the pill bottles, I wonder if there are organized efforts out there somewhere? I just made sure to put in the plastic recycling bin.  Best wishes, jack
Title: Re: Harvoni Side effects
Post by: Bob V on June 23, 2015, 10:15:35 am
I woke up a couple of weeks ago with 2 itchy bumps that I assumed were bug bites. Every day sees more of these bumps appearing and they are very annoying. It is not like the horrible itchy rash I developed in previous treatments but I am wondering if this is a side effect of Harvoni. If it is bug bites, I don't know where they are coming from and my husband hasn't been affected. I don't spend any time out doors, just home, work and back home. Has anyone else experienced this?
-----------
I broke out in a rash/bumps manly on my chest and back but some on my legs/arms last week. Never had this before. I noticed this just after pool swimming so my original thinking was the pool, still might be. Anyway, I went to my dermatologist and biopsy came back that I have a bacterial infection. My doc said I don't understand how you got this, very strange.

I'm not saying this is Harvoni related since I took my last dose March 1.
Title: Re: Harvoni Side effects
Post by: Katie on June 23, 2015, 04:14:30 pm
Hi Bob, I suppose the infection could have come from the pool if the chemicals weren't up to the needed level however I know of another person who developed a nasty rash (don't know if it was bacterial) because she would not put her washed laundry directly into the dryer.  It would sit in the washer damp overnight on a regular basis and she developed a rash on her face which ended up all over her body.  It took a while for them to figure out what was going on.

I am not saying that is what happened to you, but sometimes little things like that can cause unexplained skin conditions.

Hope both you and nadewitt both get better as that can really be uncomfortable!

Hope everyone is enjoying their summer and moving towards good health!

Katie
Title: Re: Harvoni Side effects
Post by: Bob V on June 23, 2015, 04:42:44 pm
Katie
I gave you guys the Cliff notes version on this. I had two doc's both were like what is this and we went through all the laundry, clothes, soap etc questions. They didn't think it was the pool and no one else at the pool had issues. I do the laundry and I'm VERY picky about it. I wash my running/biking gear as soon as I'm done, it NEVER sits in the hamper. Also, the pool is outside so I don't go into the gym if I did I'd be looking at that. It seems to be getting better so I guess the antibotics are working.
Title: Re: Harvoni Side effects
Post by: Katie on June 23, 2015, 05:01:04 pm
Ya Bob, Weird things just pop up sometimes and I figured you had it checked out.  Glad the antibiotics are working!

Katie
Title: Re: Harvoni Side effects
Post by: Michael J on June 25, 2015, 07:47:54 am
I am at week 9 and had thought for awhile that I had been given a placebo, but the last week or so has been very rough with fatigue, muscle weakness and drowsiness.  As a farmer I work every day outside and doing physical tasks.  I have been taking the Harvoni in the AM.  Maybe I will switch to evening dosing.  Sound familiar ro anybody else?
Title: Re: Harvoni Side effects
Post by: Bob V on June 25, 2015, 08:59:33 am
Michael
I'm retired but I do exercise every day. For me the first few weeks on Harvoni were uneventful but one day it hit me. My strength and endurance really suffered, this lasted for a few more weeks then it got a little better. I didn't go back to feeling like pre tx until 2 days post tx.

I took my Harvoni after my workout, around 1PM and took a nap. Since Harvoni is a one a day pill the half life is kinda long..not sure if the time you take make all that much difference.

Look we are all different and others who post had different experience with Harvoni then I did this is just my .02.

Good luck!
Title: Re: Harvoni Side effects
Post by: Debula on June 25, 2015, 11:15:33 am
I am at week 9 and had thought for awhile that I had been given a placebo, but the last week or so has been very rough with fatigue, muscle weakness and drowsiness.  As a farmer I work every day outside and doing physical tasks.  I have been taking the Harvoni in the AM.  Maybe I will switch to evening dosing.  Sound familiar ro anybody else?

Hi Michael
Today is week 10 for me and I am feeling really fatigued and my brain fog seems to be worse.  I just feel like someone zapped the energy right out of me.  Not sure if this is Harvoni related  because I have felt this on and off before TX too.  I hope this get s better as I still have a LONG road ahead.  I take my Harvoni at 8:00 AM sharp

Quote
I didn't go back to feeling like pre tx until 2 days post tx.
Bob I hope I get to where you are at some day. :)

Stay well
Deb
Title: Re: Harvoni Side effects
Post by: Michael J on June 25, 2015, 01:13:24 pm
All of a sudden I feel like I am 105 years old.  I am going to try dosing at 4 PM and see if that helps me during the day.  Sometimes I just have to sit down and rest my head and nod off.  Don't know if it is Harvoni or being 66 and trying to work like I am 26.  I'll post if the change in dosing times helps.  My PCP had never heard of Harvoni until I told her I was going to take it, so she has no explanation except to order more of the standard labs.  No nausea, headaches.  Just bone tired weak and weary, and I could sleep 12 hours if life allowed me that luxury.  This is almost as bad as the interferon/ribavarin I had to quit because of the debilitation.  But not quite.  Just putting this out there to share with others who may be having the same symptoms.  Harvoni or decrepitude? Hoping it is the Harvoni.
Title: Re: Harvoni Side effects
Post by: jberlin on June 25, 2015, 01:23:04 pm
Michael,

You are a champ!  Everyone fighting to cure their Hep C through treatment are champs in my book!  Hang in there, we are with you, it will be over soon and hopefully you will be done forever like I am!  -jack
Title: Re: Harvoni Side effects
Post by: KC on June 25, 2015, 11:52:34 pm
I am at week 9 and had thought for awhile that I had been given a placebo, but the last week or so has been very rough with fatigue, muscle weakness and drowsiness.  As a farmer I work every day outside and doing physical tasks.  I have been taking the Harvoni in the AM.  Maybe I will switch to evening dosing.  Sound familiar ro anybody else?

Same thing happened to me Michael, I felt wonderful for the first 5 weeks and it went down hill big time for a week or so, then felt good again. Been off it for 2 weeks now and feel fine. It is a very strange drug I will be tested next week to see where I am as far as detected or not????
Title: Re: Harvoni Side effects
Post by: Katie on June 26, 2015, 12:30:14 am
Fingers crossed for you KC

Hope you feel better Michael.  I felt great during my treatment EXCEPT for weeks 8 & 9. Couldn't really keep up with just daily activities and in such a slump.  Never have experienced anything like it and then, one morning I was great again.  Hang in there!

Katie
Title: Re: Harvoni Side effects
Post by: KC on June 26, 2015, 12:35:33 am
Hey girl..... how are you doing? I haven't been on the site much but have been thinking about you. We are on the same time frame, remember? I am 2 weeks off the Harvoni and feel fine. How are you? I go for labs next week and hoping all is well. Wow, what a journey it's been. Praying that you are good, let me know!  8)
Title: Re: Harvoni Side effects
Post by: Katie on June 26, 2015, 12:42:30 am
Hey KC..I responded to your message.  :)  Thank you!  Actually I am 16 weeks post treatment...way ahead of you, and hope your post treatment is a breeze!

Katie
Title: Re: Harvoni Side effects
Post by: KC on June 26, 2015, 01:01:41 am
I know you are way ahead of me but were having problems. I must have screwed up on my post. Are you better? Hope so!
Title: Re: Harvoni Side effects
Post by: Michael J on June 26, 2015, 06:26:55 am
Hey Katie and KC --- Thanks for the replies.  Reading your shared experiences helps me as I muddle through the doubts and depression.  I think that people who have spent their lives in construction , farming, and other constant physical endeavors take it pretty hard when their "machine" weakens and sputters.  We think we earned our worth in life through exertion and physical abilities.  Not to say that those in other walks of life don't feel as bad when they feel broken down, but there seems to be a certain poignancy for us wood, soil, steel, or stone slingers.  I am grateful for your reading and writing.
Title: Re: Harvoni Side effects
Post by: livinginthemoment on June 26, 2015, 10:46:44 am
I haven't been on here in a while - got through my side effects and my ovary bursting (not fun - just an ovarian cyst).  Had my labs done at 3 weeks exactly from starting Harvoni and my labs came in as Undetected.  Even the Log is undetected.  I know its not "I'm cured" but to drop from 6 mil + to undetected in 3 weeks has just made me want to dance on the ceiling!  All of the other tests (AST/ALT, etc) are all at the bare minimum as well.  So I KNOW this medicine is working!!!!  I am soooo happy right now, relieved really. 8 more weeks to go on the meds and I am hoping for an early birthday present of a "you are cured" by December.
Title: Re: Harvoni Side effects
Post by: rchiocchio on July 01, 2015, 05:26:07 pm
Went for my first test at 22 days... viral load is undetected. My next appointment with my doctor is in two weeks. Will update again then, but I guess all I should expect is confirmation that I am on my way to being 100% cured  :D.
Title: Re: Harvoni Side effects
Post by: 2rivers on July 01, 2015, 05:40:35 pm
Quote
Went for my first test at 22 days... viral load is undetected. My next appointment with my doctor is in two weeks. Will update again then, but I guess all I should expect is confirmation that I am on my way to being 100% cured

Good news RC. I'm at 5 weeks in. My tests were done at 4 weeks (about a week ago). Got all the results except viral load yesterday. All liver enzymes are now in the normal - low normal range. Will have viral load by Friday...hopefully it will be "undetected".

Side effects have been very minimal...haven't changed my daily routine at all.
Title: Re: Harvoni Side effects
Post by: DC Hillite on July 05, 2015, 05:54:08 pm
I'm at day 7 of treatment with Harvoni. Initial virus count was approx. 6M, then down to 0.5M most recently. Since it doesn't go away by itself, I'm getting treatment. I've been told to take my pill first in the morning, along with Protonix (stomach acid blocker).
Day #2 had me feeling like my liver was in revolt with moderate discomfort and very mild nausea about 2-3 hours after Harvoni intake. Luckily, that only lasted 2 or 3 hours.
Day #5 had me feeling totally exhausted by mid afternoon. I went home and lied down for a few hours. When I got up to rehydrate, chills came over me as if I was coming down with a nasty case of the flu. That only lasted for an hour or so, but I did spend a few more hours in urgent care where my blood was drawn for a variety of things and my chest x-rayed.
I'll keep you all posted. I hope I end up cured and not one of the Harvoni failures also posted on this site...
Title: Re: Harvoni Side effects
Post by: nadewitt on July 05, 2015, 06:12:50 pm
Please tell me that this increased joint pain will go away when I am finished with treatment! It has gradually gotten worse each week. I am on week 21 so I will be finished soon. My doctor hasn't ordered a viral load test since week 4 since I was undetected then. My liver enzymes at week 12 and week 20 were still high. From everyone's posts, most of the time the liver enzymes dropped to normal when you become undetected. It makes me nervous.
Title: Re: Harvoni Side effects
Post by: cure4me on July 05, 2015, 06:29:55 pm
You know I hate to say it but I never had headaches.  I just completed 3 months of Harvoni last week and am going to the doctor tomorrow for test results.  I was F4 but I didn't have fibrosis.  I did have digestive issues and nausea, not all the time but now and again.  I did have some weak moments.  Definitely had total lack of sleep, that to me is the worst.  I had constipation not loose bowels.  I was UD the first 30 days so here's hoping I am cured.  I have to tell you I walked 2-3 miles every couple of days and I have lost lots a lot of weight, due to surgery (hiatal) right before my Harvoni.  I have never gotten all that tired, I got more tired before I started taking Harvoni.  I always took my harvoni at night.  I have also worked the entire time, part-time though. When I came home from work I would usually take a 2 mile walk (not a run lol)twice a week and once on the weekend.  Just a few notes for you all to help I hope.  Hope this all makes sense to you.
Title: Re: Harvoni Side effects
Post by: shipinthenight on July 05, 2015, 11:32:52 pm
I used Harvoni for three months and could not wait to get done using it.  The first month, my co-pay was $3,341.00.  Who can keep affording the medication?  My charge card ran up and by the time I was done, I spent over $7,000. 
Title: Re: Harvoni Side effects
Post by: Redbird29 on July 06, 2015, 12:37:03 am
I am at day 11 of 8 weeks and I am one of the fortunate ones I guess. First day had slight headache and could "taste" the pill in my throat. I was also a bit fuzzy minded  and a little short tempered. Since then I have had no sides at all.
 I work 60 hours a week, have been at public outdoor events for work in 115 degrees and humid for 10 hours two days in a row and have had no ill effects at all.
 I sleep, I eat and I am actually feeling better than I have in years. In the past working those events would have me almost crippled with the pain in my legs and feet. Not now - there is no pain at all.
 I don't know if this will last all through treatment but I sure hope so..........
 
Title: Re: Harvoni Side effects
Post by: cure4me on July 06, 2015, 09:56:07 am
I felt much better during the middle although I had really minor side effects, it is nothing I couldn't live with for sure. I will let you know this afternoon what happens in my doctor visit after 3 months of taking Harvoni.
Title: Re: Harvoni Side effects
Post by: shipinthenight on July 06, 2015, 11:27:55 pm
I just recently finished after three months and my doctor's visit didn't show much since he wanted a liver panel in two weeks and then a second in three months.  I'm not getting my hopes up on this.  I've been through treatment before and been told the count was undetectable but it sure bounced back within a year.
Title: Re: Harvoni Side effects
Post by: KC on July 06, 2015, 11:36:43 pm
WELL THAT JUST FIGURES.....THANKS FOR SHARING THOUGH. :(
Title: Re: Harvoni Side effects
Post by: nadewitt on July 07, 2015, 08:47:20 am
I had the same experience. I'm not going to feel secure until 1 year after treatment and I am still undetected. I found out that when you get a reading of undetected it just means they quit counting when it is under a certain number.
Title: Re: Harvoni Side effects
Post by: KC on July 07, 2015, 09:46:21 am
My doc said it takes a year to know if you have really cleared it. Just a big waiting game but hope it worked...... Good luck to all!
Title: Re: Harvoni Side effects
Post by: shipinthenight on July 07, 2015, 11:51:17 am
You're absolutely right.  I believe the number is 39.  When you get a good report, it just means that they cannot detect any hep c in your blood but they cannot detect under 39.  So, when it is lurking below that level, it just comes back once more.

Besides, Harvoni is so new, I don't trust anything I read on it.  I've been battling hep c for many years and half of all I've been told is not true.

Title: Re: Harvoni Side effects
Post by: cure4me on July 07, 2015, 12:36:38 pm
Well for now I am undetected, I had no idea that it comes back, whats that!! Is it the same or what?  So waiting a year?  My doc said that for sure we will know in 3 months.
Title: Re: Harvoni Side effects
Post by: Katie on July 07, 2015, 12:47:24 pm
My take on the test results are this.  Different tests have different sensitivity on what it can detect and what it can count.  The test I had went to 15 IU/ml however even if it can not count it can still detect it in smaller numbers but not to zero.

I came back Detected (<15 IU/ml at EOT and went on to clear at 8 weeks post tx and maintained SVR 16.

What to remember is Harvoni does not "kill" the virus.  It destroys it's ability to replicate.  Since it can no longer replicate it dies off due to how long it is viable.  Understanding that gives you a better understanding of why the 12 week post tx and 24 week post tx is a good indication if your tx is successful.  Even though the test can not count below it's sensitivity number, if you had a small number in your system your follow up tests would show the virus replicating at their exponential rate during the 12 or 24 week period.

I'll feel better once a year has passed as well, however I am very confident I have cleared Hep C once and for all and that is my sincere wish for all of us!

Have a great week and enjoy each day!

Katie
Title: Re: Harvoni Side effects
Post by: dragonslayer on July 07, 2015, 03:03:26 pm
What Katie said.    With Interferon based treatments, having any virus detected at EOT generally meant treatment failure, because that treatment was based on killing the virus.. If any was left, it was free to replicate resulting in treatment failure   ... As Katie said, Harvoni is different; doesnt directly kill but interferes with replication, which accomplishes the same thing.  HCV has to replicate to 'live'.  So, when you show  up detected during, at,  or even after EOT, it doesnt necessarily preclude success..  Since the rate of HCV replication is so fast, if youre undetected at or near 12 wks post treatment, thats a clear indication in about 99.8% of cases of  SVR:

http://www.journal-of-hepatology.eu/article/S0168-8278(13)60850-8/pdf

My case is a perfect example... look at my signature;  at End Of Treatment, I thought I had failed because I was detected at 29.  But at 7.5 wks post treatment, my viral load Decreased to detected < 12 (LLOQ).  A living HCV doesnt reverse replicate; the load cant go down if its alive.  And then, at just past 11 wks post treatment, I was undetected.. So three post treatment blood test ;  3 decreases in viral load.  That wouldnt happen with earlier forms of treatment.  Im going for my 24 wk post treatment test tomorrow.    Anything is possible, but I sure like my 99.8% odds of still being SVR!
Title: Re: Harvoni Side effects
Post by: Katie on July 07, 2015, 03:27:15 pm
I'll be thinking of you Dragonslayer!  You have this, I know you do so I can't wait to hear back with your results.  My doctor doesn't think a 24 week test is needed since I was undetected at week 16.  I think I'll have a viral check next February if all stays good as that will be a year after Harvoni.

So how are you feeling?  I had some strange things happen since clearing the virus and now just have weakness and no endurance.  Absolutely zero energy. We have been experiencing an unusually hot, dry summer in our rain forest, and I don't do well in heat, so I am sure that is part of it, but I just can't get moving.  The weakness comes from my core and it is different from anything I have previously experienced.  A couple gals ahead of us, had negative side effects post treatment are now feeling good, so I am not accepting this as my new normal.  I continue to push myself as much as possible, mowing my lawn and pruning things that are taking off with this sunshine, but can only do a little bit at a time.  Frustrating!

Hope all is going well for you and it is always good hearing from you!

Katie
Title: Re: Harvoni Side effects
Post by: Redbird29 on July 07, 2015, 03:34:10 pm
Lifting and sending blessings of healing and light to you Dragonslayer on your testing tomorrow!!! SVR is on the train with you!!!

Seeing your signature also gives me hope as you also did an 8 week tx. Thank you for sharing your experiences and stregnth!!!
Title: Re: Harvoni Side effects
Post by: dragonslayer on July 07, 2015, 04:10:45 pm
I'll be thinking of you Dragonslayer!  You have this, I know you do so I can't wait to hear back with your results.  My doctor doesn't think a 24 week test is needed since I was undetected at week 16.  I think I'll have a viral check next February if all stays good as that will be a year after Harvoni.

So how are you feeling?  I had some strange things happen since clearing the virus and now just have weakness and no endurance.  Absolutely zero energy. We have been experiencing an unusually hot, dry summer in our rain forest, and I don't do well in heat, so I am sure that is part of it, but I just can't get moving.  The weakness comes from my core and it is different from anything I have previously experienced.  A couple gals ahead of us, had negative side effects post treatment are now feeling good, so I am not accepting this as my new normal.  I continue to push myself as much as possible, mowing my lawn and pruning things that are taking off with this sunshine, but can only do a little bit at a time.  Frustrating!

Hope all is going well for you and it is always good hearing from you!

Katie

Over all, Katie, I feel pretty good.. But Im plagued with insomnia..  I get to sleep ok, but I usually wake up 3 or 4 hours later, and thats all she wrote. Im averaging about 4 hrs a night, and I have no idea why, except that Ive had it for much of my life, so I cant really attach it to harvoni.  Also,  from about january 2013 right up to the present, the top of my feet get this hellacious itch mostly at night. Its not every night, but its frequency seems to be increasing..  Since this often accompanies cirrhosis, I was afraid the condition of my liver is way worse than I had been told.  Tomorrow, I requested a complete liver panel in addition to viral load, so Im thinking that should tell me a lot as to whether I need to have a fibroscan.  Aside from the insomnia and the itchy feet, Im doing well.  Im in the gym every day for about 2 hrs lifting, building strength keeping the weight down. Ive been doing this for about 10 years quite regularly.   The best part is it allows me to eat alot which is a passion of mine!  I just took a week off to vacation on Cape Cod, but got right back to working out yesterday...     Not really sure how a biopsy in '08 and again '13 (just after I started these itching bouts)  showing stage and grade 0-1  and very little progression can relate to itchy feet, but we shall see.     Thanks much for your well wishes and support!
Title: Re: Harvoni Side effects
Post by: Katie on July 07, 2015, 06:06:51 pm
Over all, Katie, I feel pretty good.. But Im plagued with insomnia..  I get to sleep ok, but I usually wake up 3 or 4 hours later, and thats all she wrote. Im averaging about 4 hrs a night, and I have no idea why, except that Ive had it for much of my life, so I cant really attach it to harvoni.  Also,  from about january 2013 right up to the present, the top of my feet get this hellacious itch mostly at night. Its not every night, but its frequency seems to be increasing..  Since this often accompanies cirrhosis, I was afraid the condition of my liver is way worse than I had been told.  Tomorrow, I requested a complete liver panel in addition to viral load, so Im thinking that should tell me a lot as to whether I need to have a fibroscan.  Aside from the insomnia and the itchy feet, Im doing well.  Im in the gym every day for about 2 hrs lifting, building strength keeping the weight down. Ive been doing this for about 10 years quite regularly.   The best part is it allows me to eat alot which is a passion of mine!  I just took a week off to vacation on Cape Cod, but got right back to working out yesterday...     Not really sure how a biopsy in '08 and again '13 (just after I started these itching bouts)  showing stage and grade 0-1  and very little progression can relate to itchy feet, but we shall see.     Thanks much for your well wishes and support!

Insomnia is terrible and I suffered from it for at least 10 years.  I wasn't achieving the deep REM sleep needed for rejuvenation and it wore me down but the tiredness from that was totally different than what I have now.  My insomnia stopped as soon as I started taking Harvoni and I am still sleeping well and dreaming too, so I am grateful for that.

Itchy feet.  That would not help your insomnia at all.  Maybe that's why you are waking up???  Could it be a circulation issue or a laundry detergent, sweaty feet. dry skin?  Knowing you as I do, you have tried to eliminate all obvious options.  I hope one day both these conditions just disappear for you as those little irritating things are troublesome and become big issues, especially lack of sleep.  Poor sleep can cause all sorts of things to go wrong so I wish you a speedy recovery and perfect blood work.

Keep up the good work!

Katie
Title: Re: Harvoni Side effects
Post by: dragonslayer on July 07, 2015, 07:06:08 pm
I dont know, Kate.. After my shower this afternoon, i put moisturizer on the tops of my feet and toes, and the itching I was feeling in the shower completely backed off.. So who knows.. Maybe its just dry feet skin!

I remember when I caught what I thought was Hep B around 1970 (its possible the doctor told me non a non b, but I seem to remember Hep B and I do test positive for the B antibodies) I was laid up for 6 wks jaundiced as hell with brown urine, and the nastiest full body Itch you could imagine.  Had to take my spring sophomore semester off from college to recover.   Its the kind of itch that scratching doesnt touch.  Because thats what it felt like on my feet, I was afraid it might be liver related. .  In 1970 I certainly didnt have cirrhosis but itched like crazy... Yet with HCV, they almost always associate this skin itch symptom not with HCV per se, but with cirrhosis.   So, it got me a little worried.. But the fact that it started appearing around the time I got my 2013 biopsy which came back stage 0-1, and Ive never had any blood tests which would indicate cirrhosis, Im pretty sure I can rule that out.  Hope my blood test tomorrow bares this out!   

The insomnia is a horrible condition which can destroy quality of life.  I usually take something, although Im able to rotate what I take so as to not be dependent on any one thing. I have a script for Ambien 10 mg, but I rarely take it and when I do, I break them in half and only take 5mg.  I also find diphenhydramine (Benadryl) to be effective, but I hate taking it because it can knock the crap out of you and leave you drowsy the next day.  So when I take that, I take a half dose, but never two days in a row... Lastly Ive found 5-HTP, an over the counter seratonin precursor to be pretty effective at aiding sleep onset.  I usually deal with the itching deal before bed with calamine lotion or some such, so thats not an insomnia factor... Only the diphenhydramine taken before bed will allow me to get back to sleep once I awake customarily around 4 hrs after falling asleep.   

So Im dealing with it but Ive found no ideal solution.. Either I deign to take the diphenhydramine and resign myself to feeling spacy and drowsy the next day but well rested, or, on most occasions, Ill have to be satisfied with 4 or at the most on a really good night, 5 hrs sleep.  Btw, one nasty side property of the diphenhydramine  is that its an Anticholinergic which means it can contribute to dementia in folks our age.. I totally believe it.. Im definitely mentally slower the day after I take it.. I sometimes like to play solitaire on my phone and there's no question that Im not seeing the relationship between the cards nearly as well the day after ingesting that stuff..  What good is extra sleep, if your sharper when youve only slept a few hours?

These are the constant choices we insomniacs are faced with.. Im only going on at length about this because Im sure there are folks here who are suffering from it and it helps relay our experiences to others with similar conditions.

Ok, so thats enough droning on about sleep issues... Back to your regularly scheduled side effects station...........
Title: Re: Harvoni Side effects
Post by: Lynn K on July 08, 2015, 04:39:30 am
Holding my breath for your 24 week test results Paul

I will be doing my 12 week post test in 19 days :)
Title: Re: Harvoni Side effects
Post by: pandaman on July 08, 2015, 08:01:09 am
Dragonslayer,

Although I don't suffer from constant insomnia, I occasionally go through periods of not being able to sleep well.

A friend recommended a magnesium product called natural calm that not only helped me sleep, but awake refreshed. The only downside is it can cause diarrhea if used to much. Are we allowed to link to products here? If not, search it on Amazon.

I went for my 4 week blood work 2 days ago. I am scheduled to complete 12 weeks
of Harvoni on August 30th which also happens to be my 63rd birthday. I couldn't ask for a better gift than to be rid of the virus.
Title: Re: Harvoni Side effects
Post by: cure4me on July 08, 2015, 09:50:28 am
I too wake up after about 3-4 hours and cannot get back to sleep.  Plagued with insomnia but I just take a sleep aid and try and get back to sleep.  I wait until I wake up to take the sleeping aid.  Doing better and trying to work out more so I am tired when I go to bed. I was hoping it would go away after I stopped Harvoni. 

I got Hep C from a transfusion in the 80's (miscarriage). Well I will know in 3 months if Hep C is completely gone my doc said after finding I was UD this week after 3 months of taking the pills. I talked to my doctor about magnesium and potassium and he said there is plenty in my system in the tests. My 3 months will be October. Post

Strange I have constipation, no loose bowels at all. Doc gave me pills now for the constipation so hopefully I will get back to normal.  I had a hiatal hernia surgery right before starting my treatment of Harvoni so I had a double whammy going on.
Title: Re: Harvoni Side effects
Post by: GLCII on July 08, 2015, 11:25:50 am
I'm at day 7 of treatment with Harvoni. Initial virus count was approx. 6M, then down to 0.5M most recently. Since it doesn't go away by itself, I'm getting treatment. I've been told to take my pill first in the morning, along with Protonix (stomach acid blocker).
Day #2 had me feeling like my liver was in revolt with moderate discomfort and very mild nausea about 2-3 hours after Harvoni intake. Luckily, that only lasted 2 or 3 hours.
Day #5 had me feeling totally exhausted by mid afternoon. I went home and lied down for a few hours. When I got up to rehydrate, chills came over me as if I was coming down with a nasty case of the flu. That only lasted for an hour or so, but I did spend a few more hours in urgent care where my blood was drawn for a variety of things and my chest x-rayed.
I'll keep you all posted. I hope I end up cured and not one of the Harvoni failures also posted on this site...

Hi DC Hillite 

Be careful with that acid stomach blocker. If you have to take it, try not to take it 4 hours before or after your harvoni pill. You might want to read Gileads PDF on Harvoni "Table 3 Potentially Significant Drug Interactions"  There was a conversation here on using antacids while taking harvoni and your stomach acid blocker caught my eye.

"Acid Reducing Agents:  ledipasvir
Ledipasvir solubility decreases as pH increases. Drugs that increase gastric pH are expected to decrease concentration of ledipasvir."

Also

"Proton-pump inhibitorsc (e.g., omeprazole)
Proton-pump inhibitor doses comparable to omeprazole 20 mg or lower can be administered simultaneously with HARVONI under fasted conditions."

I'm sure someone else on here can weigh in and tell you the do's and dont's.
Title: Re: Harvoni Side effects
Post by: Lynn K on July 08, 2015, 10:02:26 pm
Hi DC Hillite 

Be careful with that acid stomach blocker. If you have to take it, try not to take it 4 hours before or after your harvoni pill. You might want to read Gileads PDF on Harvoni "Table 3 Potentially Significant Drug Interactions"  There was a conversation here on using antacids while taking harvoni and your stomach acid blocker caught my eye.

"Acid Reducing Agents:  ledipasvir
Ledipasvir solubility decreases as pH increases. Drugs that increase gastric pH are expected to decrease concentration of ledipasvir."

Also

"Proton-pump inhibitorsc (e.g., omeprazole)
Proton-pump inhibitor doses comparable to omeprazole 20 mg or lower can be administered simultaneously with HARVONI under fasted conditions."

I'm sure someone else on here can weigh in and tell you the do's and dont's.

Hi DC Hillite

Looks like you are taking Protonix (Pantoprazole) exactly correctly.

Protonix is in the same family on meds as Prolosec (omeprazole)  and Nexium (esomeprazole magnesium) they are all PPI's or proton pump inhibitors and should be taken per the prescribing information sheet for Harvoni Table 3 sheet 6 instructions:

"Proton-pump inhibitor doses comparable to omeprazole 20 mg or lower can be administered simultaneously with HARVONI under fasted conditions."

If you take Antacids for example Tums or Rolaids that is where the 4 hour separation rule comes into play per the prescribing information:

"It is recommended to separate antacid and HARVONI administration by 4 hours."

Good luck on treatment looks like you are doing it right. For any questions always ask your doctor for clarification

Lynn
Title: Re: Harvoni Side effects
Post by: 2rivers on July 12, 2015, 05:31:21 pm
I was originally prescribed a 12-week Harvoni program, but would have had to pay the last 4 weeks myself (with a 20% discount from Gilead). However, I received my 4-week results last week and I am undetected. Yipee! The doc now says that I could forgo the final 4 weeks (if I choose) and just do 8 weeks total. She says that Gilead's new study only shows a 1 to 2 % improvement in negative responses with the extra 4 weeks. So I think I will save myself the extra $20,000 and stick with 8 weeks. I have exactly a week to go.

As far as side effects go, they have been very minimal. The only thing I want to mention is that my ophthalmologist has detected an occlusion in my left eye (enlarged vein and blood spots) which I didn't have before starting treatment. He doesn't think the Harvoni could be responsible. Has anyone else experienced anything like this?
Title: Re: Harvoni Side effects
Post by: shipinthenight on July 12, 2015, 08:44:06 pm
I didn't relate it to the Harvoni but after reading your post, I maybe should have related it.  My RX for my eyeglasses changed by a large amount and that did not make sense to me but I took it in stride thinking it had been two years since my last exam.  Since I am off of Harvoni, I notice my sight going back to normal again.  Odd? Yes, but I read of no one else complaining about their eyes and so didn't relate it to the Harvoni and maybe it is a coincidence. 
Title: Re: Harvoni Side effects
Post by: Katie on July 12, 2015, 09:44:57 pm
I was originally prescribed a 12-week Harvoni program, but would have had to pay the last 4 weeks myself (with a 20% discount from Gilead). However, I received my 4-week results last week and I am undetected. Yipee! The doc now says that I could forgo the final 4 weeks (if I choose) and just do 8 weeks total. She says that Gilead's new study only shows a 1 to 2 % improvement in negative responses with the extra 4 weeks. So I think I will save myself the extra $20,000 and stick with 8 weeks. I have exactly a week to go.

Hey 2 rivers, congratulations on your good blood work.  That news is always reassuring.  I don't know if you have been following the result thread started by Charly8 but there have been relapses with some that have cleared at 4 weeks, and at first most of the relapses were with the 8 week treatment but there are some now who relapsed with the 12 weeks as well.  I don't mean to be negative, but thought you might want to look at their results and maybe bring them up with your doctor.  The thread is filled with comments too so you'd need to start at the top and scroll down to check it out.

Personally, I would be hesitant to not take the 12 week treatment but understand the finances are something to consider.  Maybe have your doctor address this with your insurance again???

Good luck to you and hopefully you're on your way to be completely clear of this nasty virus!

Katie

Here's the thread for post treatment results:
http://forums.hepmag.com/index.php?topic=2665.new;topicseen#new
Title: Re: Harvoni Side effects
Post by: 2rivers on July 13, 2015, 10:46:17 am
Quote
Hey 2 rivers, congratulations on your good blood work.  That news is always reassuring.  I don't know if you have been following the result thread started by Charly8 but there have been relapses with some that have cleared at 4 weeks, and at first most of the relapses were with the 8 week treatment but there are some now who relapsed with the 12 weeks as well.  I don't mean to be negative, but thought you might want to look at their results and maybe bring them up with your doctor.  The thread is filled with comments too so you'd need to start at the top and scroll down to check it out.
Thanks for the link and the advice Katie. I was aware of some patients "clearing", only to have the virus return. I will read over the comments and give this further consideration.
Title: Re: Harvoni Side effects
Post by: bassman55 on July 14, 2015, 05:26:20 pm
I hope everyone is doing well...I'm down to last 7 days of 12 weeks Harvoni. Something that has popped up is a rash with itchy little bumps?  Anyone experience this? It's been on my legs,I did have itching on my back and other places before treatment,it seems to be migrating. I got to my Doc next week for end of treatment,I feel good,gained 10 lbs as of late,food tastes GOOD again! My low was 160lbs,back up to 170lbs ,I'm 5'9" so that's a good weight for me. So the only gripe I have now is the itchy bumps,not poison ivy,bugs,etc. I know itching can be from a hundred things,but there's little hard bumps that itch,the rash on the side of my thigh is about the size of the palm of my hand ,left thigh,then right inside calf, and now starting on inside of my right thigh.Pretty annoying. Cortizone 10 barely works. So...one week from now I'm done,thank god I did this treatment and not the old one with the interferon,I heard that was tuff,this has been a cakewalk. I truly wish everyone well and success in your battle, I hope mine's over,I guess I'll know in 6 months. Hang Tough!!!!
Title: Re: Harvoni Side effects
Post by: formymother on July 14, 2015, 11:09:08 pm
Hello all,

I have been reading this forum on behalf of my mom, who started Harvoni 10 days ago. Reading your stories have given both of us so much hope for her future! I am so happy that so many of you are having success with this treatment. My mom was infected by blood transfusion sometime in the late 70's - early 80's and was not diagnosed until 2003. Like many of you, she is experiencing headaches, nausea, and "flu-like" symptoms, but those side effects seemed to peak for her on Day 3 and have subsided somewhat since then.

She wanted me to ask the group on her behalf - have any of you ever switched the time you take your medication and experienced any new side effects or problems? She is currently taking her pill at 9 AM and I suggested to her that she should take it at night to possibly avoid some of the side effects she has experienced. Her doctor & pharmacist said it would be okay for her to begin taking the medication at 9 PM, but she is concerned that doing so will affect the amount of medication in her bloodstream for a short time and therefore may affect her treatment. Have any of you switched medication times and if so, experienced any additional side effects or other issues from doing so?

Thanks, and continued prayers and well wishes to all of you!!
Title: Re: Harvoni Side effects
Post by: 2rivers on July 15, 2015, 12:16:12 am
Quote
Have any of you switched medication times and if so, experienced any additional side effects or other issues from doing so?
Hi FMM...I'm doing the 8-week treatment and was taking the pill at 9 PM. I found this worked really well...I slept good and seemed to have good energy levels most of the time during the day.

Then, about 5 weeks in, we went to a concert and didn't get home until 11 PM. I totally forgot about my pill until the next morning, so now I'm taking it at 7 AM. What I noticed is that I kind of crash around 3 PM, and I am quite miserable unless I get a little nap. I would like to go back to nights, but then I'd either have a short shift between doses, or another 34 hour period between pills.

I'm a little nervous about either option, so I am sticking with the 7 AM time slot since I only have a week to go anyway. If your mother wants to switch, perhaps she should talk to her doctor (or Gilead) about how to do it. Hope this helps...
Title: Re: Harvoni Side effects
Post by: bassman55 on July 15, 2015, 12:28:12 pm
I don't work a day job(musician) so I started my 12 weeks 7-8AM every day,little to no side fx. I have 6 DAYS LEFT!!!!  Harvoni obviously effects everyone differently . I did have a little fatigue during the afternoon,it didn't keep me from riding my motorcycle of doing gigs,actually,I think my bike got me thru this easier! You forget all your problems on a motorcycle : )  You'll never see a bike parked at a therapist office.....Best to ALL !!!!!!!!
Title: Re: Harvoni Side effects
Post by: dragonslayer on July 15, 2015, 01:56:33 pm
Bassman,  Good point about the bike.. big plus for mental health.  Ive been riding a kawi ninja 650, but am thinking of upgrading..  Considering something in the Ducati Monster/ BMW R Nine-T class naked roadster class. Something with more 'character' than what I ride now which was my first bike.
Title: Re: Harvoni Side effects
Post by: april on July 15, 2015, 04:26:50 pm
I am on my 15th day of Harvoni, no side effects to speak of except for a mild occasional headache. But I have started to develop a mild rash on the right side of my body and around by my right ankle. Anyone else have a rash? It's no big deal, just curious.
Title: Re: Harvoni Side effects
Post by: Trish1 on July 15, 2015, 05:39:57 pm
Hi April,

I am in week 4 of my Harvoni.  About two weeks ago I developed patches of little red bumps on both my outer thighs, a few of them itched but not too bad.  Most of them are gone now but I still have a few.  I have read other posts where people have developed the same little red bumps.
Title: Re: Harvoni Side effects
Post by: april on July 15, 2015, 05:56:03 pm
Thanks Trish, that describes my condition too. Not bothersome, but there.
Title: Re: Harvoni Side effects
Post by: shipinthenight on July 15, 2015, 06:44:59 pm
I found that it was best for me to take the pill early in the day rather than at night because it did cause sleep problems.
Title: Re: Harvoni Side effects
Post by: KC on July 15, 2015, 08:52:57 pm
Funny, I took mine at midnight and hardly had any side effects. Once or twice a week I had a little insomnia but usually slept well and had tons of energy during the day!
Title: Re: Harvoni Side effects
Post by: Michael J on July 15, 2015, 09:17:38 pm
I agree about the bikes.  As soon as I get over the Harvoni blues, I need to get my 74 BMW back on the road.  I like the therapist connection.
Title: Re: Harvoni Side effects
Post by: Lynn K on July 16, 2015, 09:44:27 pm
Kawasaki 750 Vulcan :)

Let's ride!
Title: Re: Harvoni Side effects
Post by: dragonslayer on July 16, 2015, 11:13:20 pm
Kawi Ninja 650  :)  Anytime
Title: Re: Harvoni Side effects
Post by: shipinthenight on July 17, 2015, 05:32:34 am
All those saying none is detected after treatment give hope but I've talked to some who say, "Don't speak too soon." Still, the more good reports I read, the better I feel about my own chances.
Title: Re: Harvoni Side effects
Post by: redcat36 on July 20, 2015, 02:09:52 pm
Hello, this is my first post, and I am considering Harvoni treatment but have not started as yet...still gathering information.  I am 79 years old and have apparently had the virus since a blood transfusion in 1973.  I didn't know I had it until about 12 years ago.  I've had two biopsies that showed stage 2 liver damage, and three ultrasound scans that showed normal functioning.  My last blood tests in June of this year are as follows:
ALT = 37, AST - 38, Bilirubin - 1.1, and Viral Load = 734551.
Two weeks ago, I had a Fibro(sp)scan in my doctors office that returned stage 4 cirrhosis.  I was surprised and questioned the accuracy of the test and was assured that this new way of detection is very accurate.  I don't have any symptoms at all and wonder if it's worth it to get into treatment.
I have Kaiser Senior Advantage Insurance and they are estimating my costs will be around $3000, and they have alternative financial assistance resources available is I can qualify.
I have asked for another F Scan as I had not totally fasted prior to the last one, and that could have made a difference.  I am currently waiting for an appointment for the new scan.
Regards,
Larry
Title: Re: Harvoni Side effects
Post by: BDK on July 20, 2015, 05:31:21 pm
Hi Larry - I would say do the treatment with Harvoni for sure, given that you are stage 3 or possibly have cirrhosis.  While you may have compensated cirrhosis now with few if any symptoms, the complications of cirrhosis can creep up and become an emergency.  I just started taking Harvoni, and so far so good in terms of no side effects.  If you can afford the copay, I do not see a downside.  Wishing you all the best!  Barbara
Title: Re: Harvoni Side effects
Post by: KimInTheForest on July 20, 2015, 09:29:11 pm
Hi Larry. Welcome to the forums! I agree with Barbara - if you have an opportunity to take Harvoni, do so. You will need to determine if you are truly F4 (cirrhosis) because that will determine some aspects of your treatment. Also, what is your Genotype? 1?

If you are Geno 1 with cirrhosis, I believe you either need to take 24 weeks of Harvoni (instead of the usual 12), or take 12 weeks of Harvoni+Ribavirin. Otherwise, if you find out you aren't yet at cirrhosis and are just F3, then I believe you are looking at 12 weeks of Harvoni alone (if you are Geno 1).

I am just finishing up my 12 weeks of Harvoni+Ribavirin. Just 7 more days to go. Viral load became undetectable at Week 4 (which is typical). So I fully expect to be cured by this, and nearly all people who do the Harvoni are. Have not had any significant problems with side effects, other than low hemoglobin due to the ribavirin.

Re: your questions about the accuracy of Fibroscan - they are supposed to be accurate at F4 (cirrhosis). However, I would definitely want a second fibroscan done if mine came back F4 - and ideally at a different clinic with a different machine and different technician doing the test. I have found them to be quite variable.

Best of luck to you. And keep us posted!
kim
Title: Re: Harvoni Side effects
Post by: Lynn K on July 21, 2015, 02:39:41 am
well having the F4 cirrhosis test result will likely make it easier to qualify for treatment as many insurances are denying people with less than F3.

The treatment for people never treated before with or without is 12 weeks but with a viral load less than 6 million they could consider only 8 weeks for you and as you have at least borderline cirrhosis I would not think 8 weeks would be a good idea.

Here is a link to the prescribing information sheet for Harvoni.
http://www.gilead.com/~/media/Files/pdfs/medicines/liver-disease/harvoni/harvoni_pi.pdf

Only those with cirrhosis who have failed a prior treatment are prescribed 24 weeks normally

Really what is the difference between almost cirrhosis and cirrhosis either way you need to be treated. And in both cases your liver is already very damaged.

Good luck
Lynn
Title: Re: Harvoni Side effects
Post by: Gpwhls on July 21, 2015, 10:22:28 am
I'm new here....been on harvoni for 122 day mark....after 4 weeks the virus was undetectable......no side effects for first 2 months...but niw I feel like it's building in my system....headaches.....fatigue ....and terrible joint pain.im on the 24 week program.my doctor said every patient has cleared virus in 4 weeks.i really want to stop now.....I don't know what to do.... :(......I got 1 1/2 bottles to go.any advice continue?ive come this far....
Title: Re: Harvoni Side effects
Post by: Karen1124 on July 21, 2015, 11:00:25 am
Gpwhls,

I say keep on going!! You have got nothing to lose but Hep C lol!
I say the longer the better! You can do this! Life is good! Karen
Title: Re: Harvoni Side effects
Post by: 2rivers on July 21, 2015, 11:56:50 am
Quote
The treatment for people never treated before with or without is 12 weeks but with a viral load less than 6 million they could consider only 8 weeks for you and as you have at least borderline cirrhosis I would not think 8 weeks would be a good idea.
Hi Lynn; I just took my last Harvoni today, now headed for my blood test. I was originally prescribed 12 weeks, but my doctor said that with my viral load (2 million) and F2 diagnosis, 8 weeks should be sufficient. I should add that insurance would only cover me for 8 weeks.

I was skeptical about the 8 weeks (as compared to 12) so I did some research. In a fairly recent study of over 200 patients, there was a 97% success rate (SVR) for patients with genotype 1B, which is what I have. Apparent adding 4 weeks of treatment only made a 1 to 2% difference. The results were not as good with genotype 1A on the 8-week treatment.

Anyway, too late now to change my mind. Here's hoping that 8 weeks will do the trick for me. I'll know in 6 months I guess. Thanks for all the advice and input you have provided on these forums.












Title: Re: Harvoni Side effects
Post by: dragonslayer on July 21, 2015, 02:31:35 pm
I'm new here....been on harvoni for 122 day mark....after 4 weeks the virus was undetectable......no side effects for first 2 months...but niw I feel like it's building in my system....headaches.....fatigue ....and terrible joint pain.im on the 24 week program.my doctor said every patient has cleared virus in 4 weeks.i really want to stop now.....I don't know what to do.... :(......I got 1 1/2 bottles to go.any advice continue?ive come this far....

It helps if you list some of your case details, ie, starting viral load, degree of fibrosis/inflammation, treatment history, etc.. Also, read the forums here.. many of your questions have been asked and answered.... Best of luck to you.

Oh, incidentally, its far from true that every patient clears within 4 wks of beginning treatment.. Some of us dont even clear by the End Of Treatment, but then go on to clear by 12 wks post treatment! And unfortunately, some clear and then relapse... Its best not to take this disease for granted;  stick to the Gilead guidelines.
Title: Re: Harvoni Side effects
Post by: GLCII on July 21, 2015, 05:14:57 pm
Hi Gpwhls

You roughly 75% done. With only 46 pills to go, I say keep going too.
Title: Re: Harvoni Side effects
Post by: Gpwhls on July 21, 2015, 06:38:58 pm
Thanks...to answer some questions....I have geno type 1a ..stage 4 cirrhosis.....2 time no responder to old treatments......I'm not saying all people clear in 4 weeks...I'm just saying that's what my doctor told me...he said every patient he has treated so far showed no virus in 4 weeks?But I do wonder has anyone else expereanced joint pain?im the opposite of a hypochondriac it's really rough...ankle joint ,mostly shoulders...fingers???ill talk to my doc too...thank you all ...
Title: Re: Harvoni Side effects
Post by: Katie on July 21, 2015, 06:48:53 pm
Some who looked as if they cleared during treatment have relapsed.  Quite a few have reported joint pain.  One gal who was on for 24 week treatment stopped before completion, per doctor's orders, because of severe joint and muscle issues (she was close to EOT).

If you scroll way back are read, as Dragonslayer suggested, you will find a wide range of issues and complaints.  The treatment affects many people differently.

Hang in there and good luck to you!

Katie
Title: Re: Harvoni Side effects
Post by: redcat36 on July 21, 2015, 07:19:46 pm
Thanks to all for your comments:  Barbara, Kim and Lynn.  I'll probably be taking the treatment soon as I have green lights all the way.  One more test to verify F4 and I'm ready.
Regards,
Larry (redcat36)
Title: Re: Harvoni Side effects
Post by: Lynn K on July 21, 2015, 11:09:59 pm
Hi Lynn; I just took my last Harvoni today, now headed for my blood test. I was originally prescribed 12 weeks, but my doctor said that with my viral load (2 million) and F2 diagnosis, 8 weeks should be sufficient. I should add that insurance would only cover me for 8 weeks.

I was skeptical about the 8 weeks (as compared to 12) so I did some research. In a fairly recent study of over 200 patients, there was a 97% success rate (SVR) for patients with genotype 1B, which is what I have. Apparent adding 4 weeks of treatment only made a 1 to 2% difference. The results were not as good with genotype 1A on the 8-week treatment.

Anyway, too late now to change my mind. Here's hoping that 8 weeks will do the trick for me. I'll know in 6 months I guess. Thanks for all the advice and input you have provided on these forums.

Hi

For you that should be just fine with only F2 fibrosis. The person I was replying to has F3 or on recent fibroscan F4 cirrhosis  so even though they have a low viral load and are treatment naive I would hope their doctor plans on the  12 week and not the 8 week as they are at least borderline cirrhosis if not early cirrhosis.

Really they are calling SVR 12 cured you should know at 12 weeks post 24 weeks is just to put the final fork in it and call it totally done. The stats say 12 weeks is 99.8% likely cure Congrats on finishing treatment and wishing you SVR forever!

Lynn
Title: Re: Harvoni Side effects
Post by: AaronML on July 23, 2015, 11:07:14 pm
Hey, I'm new. I started Harvoni a week ago. 3 days in I started to have muscle pain in my back neck and sometimes legs. Anyone else have these symptoms? Other than that very mild headaches and fatigue late in the afternoon. I contacted hep c sometime within the past year from a patient, luckily I went to have some routine labs and they found it. I'm a 1a with F2 and less than 1,000,000.

Title: Re: Harvoni Side effects
Post by: S.Belle on July 24, 2015, 08:03:21 am
Not sure if this will help anybody, but I work also and have found that taking Harvoni AFTER work everyday puts my fatigue level at its peak around bedtime. I'm on Day 10 and with only very mild headaches. Aspirin a day helps. My two week blood test is next Tuesday and I'm on a 12 week program. My viral load is VERY low, but I am F3 and the doc says THAT is the reason for 12 weeks.
Title: Re: Harvoni Side effects
Post by: SunIsOut on July 24, 2015, 11:16:02 am
My take on the test results are this.  Different tests have different sensitivity on what it can detect and what it can count.  The test I had went to 15 IU/ml however even if it can not count it can still detect it in smaller numbers but not to zero.

I came back Detected (<15 IU/ml at EOT and went on to clear at 8 weeks post tx and maintained SVR 16.

What to remember is Harvoni does not "kill" the virus.  It destroys it's ability to replicate.  Since it can no longer replicate it dies off due to how long it is viable.  Understanding that gives you a better understanding of why the 12 week post tx and 24 week post tx is a good indication if your tx is successful.  Even though the test can not count below it's sensitivity number, if you had a small number in your system your follow up tests would show the virus replicating at their exponential rate during the 12 or 24 week period.

I'll feel better once a year has passed as well, however I am very confident I have cleared Hep C once and for all and that is my sincere wish for all of us!

Have a great week and enjoy each day!

Katie

My 8 week post treatment came back detected with a value of 270 where I was undetected at weeks 8, 12, 16. They want to retest next week. It is cloudy today in my personal world and I am being life tested where I am still job hunting too!
Title: Re: Harvoni Side effects
Post by: Redbird29 on July 24, 2015, 12:22:00 pm
SunIsOut - I am so very sad to hear this.....  :'(

Please keep us update on your next test and if your treatment team has any options available for you to pursue.

Peace and blessings ~ Robin
Title: Re: Harvoni Side effects
Post by: rchiocchio on July 24, 2015, 01:46:11 pm
Just got back the results of my 2nd (7 weeks?) test, and it's still undetectable. So I will be finishing up my 8 weeks, and not going for 12 weeks as originally planned. In the last few weeks I've felt a lot better than I did during the first half of the treatment. Hopefully it is just smooth sailing from here.
Title: Re: Harvoni Side effects
Post by: dragonslayer on July 24, 2015, 02:43:34 pm
My 8 week post treatment came back detected with a value of 270 where I was undetected at weeks 8, 12, 16. They want to retest next week. It is cloudy today in my personal world and I am being life tested where I am still job hunting too!

Sun, really sorry to hear this. Questions:  when did you start treatment and what was its duration?  Is your 8 wk post treatment test  your only post treatment test to date?  Since the virus replicates at a rapid rate, 270 is a low count, so hoping there is still a chance that you may clear prior to 12 wks.  For what its worth, as you can see in my sig, I was detected also at near 8 wks post treatment.
Title: Re: Harvoni Side effects
Post by: Katie on July 24, 2015, 02:52:37 pm
My 8 week post treatment came back detected with a value of 270 where I was undetected at weeks 8, 12, 16. They want to retest next week. It is cloudy today in my personal world and I am being life tested where I am still job hunting too!

Concerning, devastating news, SunIsOut!  You are one of my buddies who was always so inspiring and I am totally shocked by these results.  However, like DragonSlayer mentioned, both of us were detected at EOT and beat the virus, so I would definitely get another test in a few weeks to see if it is going down or replicating.  That will be the best indicator.

Sending you a big {{{{HUG}}}} and will have you in my thoughts!  The battle isn't over yet and we are here for you!

Katie
Title: Re: Harvoni Side effects
Post by: SunIsOut on July 24, 2015, 02:58:37 pm
Concerning, devastating news, SunIsOut!  You are one of my buddies who was always so inspiring and I am totally shocked by these results.  However, like DragonSlayer mentioned, both of us were detected at EOT and beat the virus, so I would definitely get another test in a few weeks to see if it is going down or replicating.  That will be the best indicator.

Sending you a big {{{{HUG}}}} and will have you in my thoughts!  The battle isn't over yet and we are here for you!

Katie

Thanks Katie and Dragonslayor,

I will go first of August to repeat the test and I have been having 4 week labs since starting treatment where labs 8,12,16 were undetected and labs 1, 20 week were detected. Yes 270 is low so we will see soon. I was on the 12 week treatment.
Title: Re: Harvoni Side effects
Post by: dragonslayer on July 24, 2015, 03:10:04 pm
Sun... So you had a 4 wk post treatment test which was undetected?  I cant quite tell by the way you list your results... Generally, its best to use 'On Treatment' and 'Post Treatment' designators before each lab posting  rather than counting wks from the beginning of treatment for post treatment results reporting.  Less confusing that way.

If so, as you can see in the link, the 4 wk post treatment  test result of UND is 98.5% predictive of SVR12 and 99% predictive of SVR24, so, it would be extremely unusual for you not to clear at 12 wks if true..Ive never heard or read of anybody here, I think, who, on harvoni, was Undetected at 4 wks post and then detected at the SVR12 check point.

Hoping for the best...


http://www.journal-of-hepatology.eu/article/S0168-8278(13)60850-8/pdf

Title: Re: Harvoni Side effects
Post by: SunIsOut on July 24, 2015, 08:21:08 pm
Sun... So you had a 4 wk post treatment test which was undetected?  I cant quite tell by the way you list your results... Generally, its best to use 'On Treatment' and 'Post Treatment' designators before each lab posting  rather than counting wks from the beginning of treatment for post treatment results reporting.  Less confusing that way.

If so, as you can see in the link, the 4 wk post treatment  test result of UND is 98.5% predictive of SVR12 and 99% predictive of SVR24, so, it would be extremely unusual for you not to clear at 12 wks if true..Ive never heard or read of anybody here, I think, who, on harvoni, was Undetected at 4 wks post and then detected at the SVR12 check point.

Hoping for the best...


http://www.journal-of-hepatology.eu/article/S0168-8278(13)60850-8/pdf

I had the twelve week treatment and had tests every 4 weeks plus every 4 weeks after treatment. Here is how it went;

Treatment Period;

Week 4 - detected
Week 8 - undetected
Week 12 - undetected

Post treatment Period;

Week 16 - undetected
Week 20 - Detected 270

I am supposed to speak with John Hopkins on Monday. They called today to discuss but I missed the call. I will keep you all posted.

thanks everyone!  :)
Title: Re: Harvoni Side effects
Post by: Lynn K on July 25, 2015, 02:52:59 am
So week 16 is 4 weeks post treatment so you were SVR4 and week 20 was 8 weeks post so the test you will be having next on the 1st of August would be your 12 week post treatment test if I am understanding correctly

Best of luck they do say once hep c comes back it replicates very rapidly so with that low number wishing you the best possible results

Good luck
Lynn
Title: Re: Harvoni Side effects
Post by: gnatcatcher on July 28, 2015, 10:58:33 am
Day 20 of Harvoni Tx. Side effects have been minor:
Good=more energy (I had really been dragging during years 42-43 of HCV)
Okay=less sleep (but functioning adequately thanks to the extra energy)
          more pee on Days 1-5 (drinking 72-80 oz./day is 2 C more than pre-Harvoni)
Bad = general abdominal discomfort (most days; tenderness comes and goes)
          sluggish bowels >=Day 7 (same high-fiber diet but much less #2 output)
          I'm doing the same exercise routines as before, so this is puzzling.
         
Happy to say that I forget I'm on Harvoni except when the alarm clock reminds me to take the next pill. Many thanks to everyone on this forum for preparing me well.
Title: Re: Harvoni Side effects
Post by: sickpuppy on July 28, 2015, 04:28:19 pm
Day 20 of Harvoni Tx. Side effects have been minor:
Good=more energy (I had really been dragging during years 42-43 of HCV)
Okay=less sleep (but functioning adequately thanks to the extra energy)
          more pee on Days 1-5 (drinking 72-80 oz./day is 2 C more than pre-Harvoni)
Bad = general abdominal discomfort (most days; tenderness comes and goes)
          sluggish bowels >=Day 7 (same high-fiber diet but much less #2 output)
          I'm doing the same exercise routines as before, so this is puzzling.
         
Happy to say that I forget I'm on Harvoni except when the alarm clock reminds me to take the next pill. Many thanks to everyone on this forum for preparing me well.

Is there any way I can email my gnatcatcher avatar? I don't have a web page.

That's interesting, I have exactly the opposite effect.

All abdominal discomfort gone, I had it before treatment. I sleep more than I did before treatment and I now go #2 regularly, like clockwork, two times per day. I used to go once every 3-4 - I was on lactulose too because of this, trying to get things going.

Energy wise, I have less, a lot less.
Title: Re: Harvoni Side effects
Post by: gnatcatcher on July 28, 2015, 05:59:08 pm
You're not kidding about EXACTLY the opposite effect: I used to have two #2's per day! One thing this side-effects forum shows over and over is that Harvoni causing opposite effects on two people is far from unusual. I'm really sorry you have a lot less energy and hope it returns quickly post-Tx.
Title: Re: Harvoni Side effects
Post by: Myfly73 on July 28, 2015, 07:09:24 pm
Will the hair fall out during this Harvoni treatment?
Title: Re: Harvoni Side effects
Post by: gnatcatcher on July 28, 2015, 09:02:11 pm
"Will the hair fall out during this Harvoni treatment?" -Myfly73

That's very unlikely. Mine has been fine so far (20 days). I used the "Advanced search" function at left (below the Stats) and entered "hair Harvoni" to see all references in these forums. When I weeded out messages that discussed hair loss with prior treatments or hair loss with combined treatments (Harvoni concurrently with some other drug), few people seemed to experience hair loss on Harvoni alone, and then it seemed to be limited to thinning, not the kind of total loss that occurs with cancer chemo. Feel free to do the search yourself, in case I missed something, but chances are you'll either lose no hair at all or lose only a little.
Title: Re: Harvoni Side effects
Post by: Lynn K on July 28, 2015, 11:59:50 pm
Hi Sick puppy

Are you taking lactulose for hepatic encephalopathy? I saw on your other post you have had a bleed from varicies. Would you know your MELD score?

I hope you are being seen by a liver specialist associated with a liver transplant center they are best equipped to care for a patients like us with cirrhosis.

Good luck
Lynn
Title: Re: Harvoni Side effects
Post by: Mugwump on July 29, 2015, 12:21:58 am
Will the hair fall out during this Harvoni treatment?
No. This is not at all the same type of chemo therapy used for cancers. If anything the increase in blood pressure some experience might cause hair to grow. But Harvoni is not approved for the purpose. The only real hair loss risk is if you wind up pulling your hair out waiting for your test results, especially if you live in BC Canada like I do! :P ::)
Title: Re: Harvoni Side effects
Post by: Gemini on August 01, 2015, 03:15:58 pm
Hello all.
I began Harvoni on July 30th. I've been diagnosed for twelve years and possibly infected in 76 due to a blood transfusion I received as a newborn. The side effects I have experienced are extreme hunger. Which is very tough for me to deal with as I have just lost thirty pounds due to exercising daily and eating right. Is anyone else having this problem? I look forward to everyone's posts. Thank you!!
Title: Re: Harvoni Side effects
Post by: dragonslayer on August 01, 2015, 04:05:42 pm
Gem,

For me, much more impactful for my appetite than Harvoni has been working out hard and often!  My appetite was large during harvoni, before harvoni, and after harvoni, mainly as a result of spending 2-3 hrs in the gym daily.  Burning the calories prompts the hunger.
Title: Re: Harvoni Side effects
Post by: Mugwump on August 01, 2015, 04:12:55 pm
Hello all.
I began Harvoni on July 30th. I've been diagnosed for twelve years and possibly infected in 76 due to a blood transfusion I received as a newborn. The side effects I have experienced are extreme hunger. Which is very tough for me to deal with as I have just lost thirty pounds due to exercising daily and eating right. Is anyone else having this problem? I look forward to everyone's posts. Thank you!!
A normal balanced diet with 6-8 OZ of various proteins whether from legumes or not, PLUS at least 1200 calories worth of various starches from starchy fruits and vegetables and grains along with good hydration with just good ol' water was what I tried to do. My weight didn't drop but unfortunately I have a high body mass have F4 cirrohsis and am 62 years of age and was not as active during treatment as I should have been.

If you are extremely active your system will need more calories than that!.  I know that if I was working hard during treatment I would have had to eat at least 2500 calories of food stuffs per day. Fortunately I am not a diabetic yet... touch wood as late onset type two runs on my fathers side of the family.

So essentially if you are very active and have a low body mass restricting your diet is not at all a good idea
. Harvoni does not cause the hunger period!

As you clear the virus and your liver functions improve you will find more than anything else that the way your body metabolizes food will improve.

Just eat normally and don't sweat it, exercise will not help you to get rid of HCV, but your renal system along with a healthy liver that is not starved for essential nutrients will.

Slay that dragon I know you can and will do it!
Eric 
Title: Re: Harvoni Side effects
Post by: gnatcatcher on August 01, 2015, 05:16:52 pm
I began Harvoni on July 30th. I've been . . . possibly infected in 76 due to a blood transfusion I received as a newborn. The side effects I have experienced are extreme hunger. Which is very tough for me to deal with as I have just lost thirty pounds due to exercising daily and eating right. Is anyone else having this problem? . . .

Gemini, I also experienced extreme hunger when I started Harvoni (on July 9). Like you, I was also infected via transfusions in the 1970's (1971). I attribute the voracious appetite to the energy boost I began to feel within hours of taking the first Harvoni pill. I did gain several pounds during the first few days, but I continued doing the identical exercise routines as in pre-Harvoni days, although I'm walking more (and more briskly) because of the extra energy. The hunger has leveled off and the extra pounds are gone, partly because I'm drinking 2C more water/day than pre-Harvoni, and partly because my body has become accustomed to the increased energy.

If you keep exercising daily, eating right, and consuming enough water (which helps take the edge off the hunger pangs), your appetite will probably soon recalibrate itself.
Title: Re: Harvoni Side effects
Post by: dragonslayer on August 01, 2015, 05:37:16 pm
Weight gain is simple... If you consume more calories than you burn, you will gain weight, regardless of Harvoni.  If hunger leads to more consumption, then exercise harder and you wont gain weight, unless you are exercising and eating in a way to build muscle.. Muscle weighs more than fat, so in that case, you will gain weight,  but muscle weight gain is usually not the problem.
Title: Re: Harvoni Side effects
Post by: sickpuppy on August 01, 2015, 08:06:08 pm
Hi Sick puppy

Are you taking lactulose for hepatic encephalopathy? I saw on your other post you have had a bleed from varicies. Would you know your MELD score?

I hope you are being seen by a liver specialist associated with a liver transplant center they are best equipped to care for a patients like us with cirrhosis.

Good luck
Lynn

Hi Lynn,

My situation is very confusing. My disease seems to be improving, rather than being worse as time passes. To answer your question, I had bleeding at age 11, then at 12 and 13. I took lactulose for 2 weeks sometimes 2 years after that because of high ammonia levels. I don't think it was HE, or maybe I didn't notice it. In any case, I didn't need it anymore since then and the varices disappeared.

Naturally, I had a check-up (blood, endoscopy, ultrasound) every six months and my liver has improved or at the very least remained the same as 10 years ago. I can't explain why, but the improvement started once I was put on Propranolol and Silymarin.

I keep trying to grasp where I am in terms of a SVR chances and I don't know if I should put myself in the compensated, decompensated or re-compensated cirrhotics. 16.2 kPa, currently on 12 weeks Harvoni + Ribavirin. Very scared 12 weeks won't cut it, blaming myself for not waiting until December to go for the Indian generics, 36 weeks, just to be sure :).

My MELD fluctuates between 12 and 14. Other bloods put me in CPT A with a score of 6, but the fact that I took lactulose for ammonia that one time might indicated that it's HE, controlled, which would turn my CPT into a 7, so a B.
Title: Re: Harvoni Side effects
Post by: HepcPbc on August 04, 2015, 07:38:05 pm
Still new at this.  Hope I am posting in the correct place, and if not, please let me know  I started Havoni a few days ago and feeling fine.  In fact, feeling better than before.  But now, I've noticed that a bone spur that I've had for ages on the bottom of my foot has suddenly and dramatically increased in size and it's now about the size of 1/2 of a golf ball.  I had swelling of legs before Havoni and more frequently with Harvoni.  Also, I've increased the amount of walking.  I only wear flat shoes.  Not sure if it could be Harvoni or liver related deficit, or related to the increased walking, but it noticeably increased in size during the day today.  Anyone else with related issues?
Title: Re: Harvoni Side effects
Post by: Mugwump on August 05, 2015, 02:00:20 am
Still new at this.  Hope I am posting in the correct place, and if not, please let me know  I started Havoni a few days ago and feeling fine.  In fact, feeling better than before.  But now, I've noticed that a bone spur that I've had for ages on the bottom of my foot has suddenly and dramatically increased in size and it's now about the size of 1/2 of a golf ball.  I had swelling of legs before Havoni and more frequently with Harvoni.  Also, I've increased the amount of walking.  I only wear flat shoes.  Not sure if it could be Harvoni or liver related deficit, or related to the increased walking, but it noticeably increased in size during the day today.  Anyone else with related issues?
With a caveat here. I am not a doctor but fluid on the legs and feet is common with liver disease. I hope it starts to improve as soon as your liver starts to function better. I have F4 cirrhosis but fortunately little abdominal swelling from liquid in my abdomen (ascites) or marked swelling of my feet or legs. But sometimes over the years my feet did get a little puffed up if the disease was suddenly more active or if I got sick and my urine darkened and there was a little trouble with my renal functions.

In fact, during treatment I found it more easy to pass fluids and was considering using a chamber pot chair temporarily so that I would not have to wake my wife every few hours when I went to have a leak.

And that is the whole point as your liver function normalizes you should also have better overall renal functions.

I know I did starting about week 8. It was almost like a miracle! All of a sudden I could work again and hike and most importantly fly fish and wade rivers.

All that being said please see your doctor if you have fluid troubles especially keeping decently hydrated during treatment or if you have trouble passing urine at all.

All the best during your treatment.
Eric
Title: Re: Harvoni Side effects
Post by: HepcPbc on August 05, 2015, 04:55:50 am
Thank you Eric.  Never much of a water drinker before, but now I drink a lot of water and actually enjoy the taste.  And I seem to have no problem with renal function.  To clarify my previous post, the part about the bone spur, the bone spur itself is not the size of 1/2 golf ball, but the bump on the bottom of my foot.  I think the bone spur has increased in size and maybe swelling, and fluid added to the rapid increase in size.  I see a Dr after my first week of treatment, so will discuss then.  I did find an archive from earlier years about bone formation in the knees and I think it was where there was already damage.  Thank you again Eric, and happy healing to you, too.
Title: Re: Harvoni Side effects
Post by: alowishes on August 07, 2015, 04:27:59 pm
I did not have a great amount of discomfort, did have ache's in joints..

I would also need to crash midday. I did my 12 weeks & go for blood on Monday.

I will let all know how I made out..I am very interested in how long will these side effects last, as I am still fatigued & ache in joints. I have fiends who did the needle thing.....I am so happy for this miracle. This, from what they have told me is a walk in the park. Lets hope we all make out * Cheers*
Title: Re: Harvoni Side effects
Post by: mklbjk on August 07, 2015, 05:29:27 pm
I am new to post but have been here learning for a while.  I started Harvoni June 24th.  I have had occasional fatigue and a few headaches but nothing that stops me from my usual activities.  I was Undetected (0) at my 4 week labs with Alt and Ast down to 15 and 20.  Very grateful for this treatment.  Just received my third and last bottle of Harvoni today.  The time has flown by.  Will be done on Sept 15th. 
Prayers for successful outcomes for everyone!
Title: Re: Harvoni Side effects
Post by: april on August 07, 2015, 07:00:10 pm
I am half way there, just started week six of Harvoni only. I have NO side effects. Waiting for results of my first set of labs :D
Title: Re: Harvoni Side effects
Post by: Wolffeathers on August 07, 2015, 07:24:30 pm
Hi, I was diagnosed in 2007. I went thru the interferon ,Ribavirin to no avail.. Then tried again in 2012, but once again the treatment failed.. I have now been on Harvoni and Ribavirin for 5 weeks and at week 3 vl was undetectable.. My symptoms have been few and I guess I don't think that much of them due to previous treatment that was so horrible.. My RBC are low so just have to stay on top of lab work.. To any one that has any doubts just hang in there.. Try to do all the right things to make yourself well.. My prayers go out to each and every one of you.. The monster will live no more..
Title: Re: Harvoni Side effects
Post by: Myfly73 on August 07, 2015, 10:40:20 pm
Thank you all for the encouragement and information as well as support during journey to come. Bless you All!
Title: Re: Harvoni Side effects
Post by: KimInTheForest on August 07, 2015, 10:56:02 pm
Welcome to the forums and to the journey, Myfly73, Wolffeathers, mklbjk, alowishes and all others who have just started posting here. Good luck to all of us.

kim :)
Title: Re: Harvoni Side effects
Post by: MJ82 on August 11, 2015, 04:48:16 am
It's clear that experiences with Harvoni vary quite a bit, though statistically, the majority may not have side effects or at least only minimal for all I know.

I'm on day 8 of Harvoni, and I am getting side effects quite strongly now, which I didn't expect. The first couple of days were absolutely fine and I felt nothing, and then day 3 and 4, i started to get some fatigue late afternoon (even before I take my 8pm pill).

Yesterday for the first time, the fatigue came in waves through out the day and was rather strong. It's not that I felt the need to sleep or lie down, but small tasks made me feel like I'd exerted myself intensely - a very heavy physical feeling with a little shortness of breath. I've also been feeling a bit dizzy and have had some headaches, some mild joint pain (which has been a lifelong friend with my Hep C anyway), a dry mouth and occasionally a slight metallic taste in the back of y throat. My blood pressure has also gone up a little from time to time.

I did 11 months of Interferon and Ribavirin about ten years ago and it's true that that was grueling, but I wasn't expecting to feel so affected by this new drug. I do hope these side effects pass soon and that I start to feel the energy surge that everyone talks about! Either way, it will all be worth it to kick this virus! Best of luck to everyone here!
Title: Re: Harvoni Side effects
Post by: slats1056 on August 11, 2015, 11:47:30 am
 Day 27 on Harvoni. Most side effects leveling off. Still get some bad ass head aches a couple of times a week. Got used to the tinnitus. Sleep still seems to be the major issue. 2-3 hours a nite. Joint pain persistent but bearable. Does anyone think that water consumption causes any electrolyte problems? Started adding Gatorade and pedialyte to fluids & leg cramping seems to have abated.                                                                                                                                                                                                                                             Went in Yesterday to pick up second Rx from Dr. Had 4 weeks labs done while I was there. Now waiting for next Monday for office visits & lab results. Cautiously optimistic!!! Seeing all of the info. on You guys signature is promising. As soon as I get my results back I will update My signature.                                                                                                                Well, I guess the brain fog hasn't lifted. Forgot I was posting this & left it hanging on My screen.
Title: Re: Harvoni Side effects
Post by: Patience on August 11, 2015, 11:27:43 pm
First time post from a "lurker" who has read the posts on this site with interest and learned a great deal from them. I am 18 Harvoni pills away from end of 12 week treatment and I have had a selection of sides from the Harvoni Side Effects Menu - moderate fatigue, headaches, nausea, dry, blurry eyes, tinnitus,itching, and aching joints. All of these were tolerable and gratefully put up with until yesterday. I woke up at 4:30 a.m. itching and nauseated and I was concerned enough to see my primary doctor, who gave me some anti-nausea stuff, which by the time I got it, I didn't need enough to risk taking.  Today I was knocked flat by fatigue the likes of which I have never experienced. I'm quite used to the kind where you go about your day wishing you could just lie down, but I've never had the kind where standing up was not an option. I'm thinking this must be unusual for the 10th week? I spent the entire day in bed just barely able to make it to the bathroom and to let the dogs out. I'm determined to get those last 18 pills down, but if this continues it will be a lot harder than I was expecting. My labs from yesterday came back all in the normal range -VL und, AST 22, ALT 13, so right on target there - no complaints! Just puzzled and concerned over the sudden increase in fatigue. Thanks to all who post here for support and encouragement. It really helps!
Title: Re: Harvoni Side effects
Post by: Katie on August 11, 2015, 11:53:46 pm
Hang in there Patience.  During week 9 & 10, I had a similar situation for about 10 days.  I've never been depressed but figure that was what it was like in an extreme case.  I had the worst fatigue where I had to talk myself into feeding my dog and cat, who are my best buddies.  I would just sit in a chair with my head hanging as I didn't have the strength to hold it up.  Then one morning, I woke up and felt great again.  It was a very strange thing as my treatment prior to that episode was easy and I had felt better than I had in years.

I also want to mention, that my EOT blood work came back detected <12 IU/mL which was so disappointing.  My doctor had me take another test at post treatment week 8 and week 16 which both came back undetected.  I am truly blessed.  Several others also detected at EOT have cleared the virus so don't give up and my feeling is if you are a strong responder lowering your level down to almost zero, that you will clear, so get retested.  This was not shown in the test group results and had some of us really stressed out.

Another thing is as soon as I stopped the little orange blessing, my energy spiraled down and I haven't been feeling well.  This has lasted, with slow, small improvement and now 5 months post treatment, I am finally feeling better.  Not 100% but I am mowing my small lawn and starting to get my house in order.  It has been a rough summer for me but I feel blessed and know it was well worth it to be free of the alien, parasitic HepC virus.  I am no longer a bio-hazard and that is remarkable!

Remember everyone reacts a bit differently, so what I experienced doesn't mean anyone else will, but since you are experiencing the 10 week issue same as me, I wanted to share my general experience.

Good luck to you!

Katie
Title: Re: Harvoni Side effects
Post by: slats1056 on August 12, 2015, 09:50:24 am
  Patience keep on keeping on. One foot in front of the other. You will get there. I just try to be as positive as possible. Talk to the Doc if You are ever in doubt. Forums are a big help so far for Me also. Glad You are so for along on Your RX. Hate that You are having issues. Boy I am hoping My issues mellow a little down the line (sleep issues, massive head aches, joint pains) the rest are manageable so far. Never thought about the blurry eyes, just focusing on small print. Fatigue is a problem at work. So far spurts of energy then crash several times through out the day. Congratulation on Your labs. I get My four weeks results 8-17-15. Instead of complaining , I prefer to think of it as sharing Your observation and experiences here on the forums! Great place to do that by the way. Someone usually points out the obvious that You never see or think about. Hope thing get better fast and the rest of Your treatment is good to You.
Title: Re: Harvoni Side effects
Post by: Patience on August 12, 2015, 10:07:55 am
Thanks, Katie. I especially liked the part where you woke up one morning and felt great again! I feel better today than yesterday, but I'm for sure not dancing, and the dogs, the couch, and I will be partners for most of the day.

According to the tests I had this week, I have cleared the virus and I suspect that I have been clear for a while since my 3 week labs, tho still detected, showed a really dramatic drop. What I'm wondering is; if all those little Harvonis are out of a job now so to speak, what kind of mischief are they getting up to in there? I know it only makes sense to stay the course and finish the 12 weeks to make sure all virus is eradicated, but maybe it's too much of a good thing? Guess there's no way to know.

I'm so glad you are finally feeling better. It's been a long haul, but the end result is a gift that a lot of us thought we'd never have. Every day brings you closer to the one where you wake up and feel great again!

Slats1056 - just saw your comment. Thanks! Yesterday one foot wouldn't GO in front of the other!! But today is better and I am actually somewhat upright. Luckily, I'm retired so I don't have to go to work any more. But I really admire the grit and courage of those of you who soldier on to jobs every day- I'm not sure I could have. Good luck on your labs!


Title: Re: Harvoni Side effects
Post by: slats1056 on August 12, 2015, 06:00:30 pm
Patience  Judging by the stats list on the signatures You will have plenty of time and reason to break into Your happy dance soon. Keep it up and good luck. Not sure how I accomplish day to day working full time. Family, sheer ignorance, not wanting to give up or what. Sometimes family & friends just don't understand. But the again they are mere mortals, and we superheppers with this virus were put here to conquer HEP once and for all!!!!! HA HA HA!!!LOL!!!! Need more humor I think. Makes sense to Me. BTW, wouldn't it be cool to be a super hero & knock the crap out of this stuff? Laughing usually goes a long way to making me feel a little better when I crash.
Title: Re: Harvoni Side effects
Post by: Mugwump on August 12, 2015, 06:11:07 pm
It's clear that experiences with Harvoni vary quite a bit, though statistically, the majority may not have side effects or at least only minimal for all I know.

I'm on day 8 of Harvoni, and I am getting side effects quite strongly now, which I didn't expect. The first couple of days were absolutely fine and I felt nothing, and then day 3 and 4, i started to get some fatigue late afternoon (even before I take my 8pm pill).

Yesterday for the first time, the fatigue came in waves through out the day and was rather strong. It's not that I felt the need to sleep or lie down, but small tasks made me feel like I'd exerted myself intensely - a very heavy physical feeling with a little shortness of breath. I've also been feeling a bit dizzy and have had some headaches, some mild joint pain (which has been a lifelong friend with my Hep C anyway), a dry mouth and occasionally a slight metallic taste in the back of y throat. My blood pressure has also gone up a little from time to time.

I did 11 months of Interferon and Ribavirin about ten years ago and it's true that that was grueling, but I wasn't expecting to feel so affected by this new drug. I do hope these side effects pass soon and that I start to feel the energy surge that everyone talks about! Either way, it will all be worth it to kick this virus! Best of luck to everyone here!

It can be tough for the first 3 to 4 weeks. The difference is that Interferon hit like a train for 4 days after you first take it then slowly you felt better till the next shot. What happened to me on Interferon/rib was that my blood count became dangerous at about 6 months so the dose of rib had to be lowered. All I remember is I became weak as he&% and it took me over a year to recover from 48 weeks of peg/rib.

At week 4-5 of Harvoni I suddenly started to feel great but like you at first it definitely did throw me for a bit of a loop. But no where near as bad as the other treatments. I took no pain killers or nsaids at all during Harvoni treatment and I never felt so bad that they were necessary. But there definitely were periods of lethargy, headaches, some minor myalgia which is still present at 12 weeks post treatment but is slowly going away.

I am F4 and I suspect that some who have more ongoing damage will necessarily feel more side effects. IMO the positive side effect of knowing that I have had the chance to live a life free from the horror of HCV and that life is the best answer to the waiting and worries. No matter how short or long life will be will after clearing the virus, it will certainly be better than what it was before Harvoni for me at least. I suspect people get very used to the horrible debilitating effects of compromised liver function and forget what it was to feel normal.

Get rid of the dragon and all the best in reaching SVR
Eric
Title: Re: Harvoni Side effects
Post by: philsky on August 12, 2015, 07:15:31 pm
I finished my pills on July 11th. Things only get better once your liver and triglycerides get normal. Stay the course is all I can say. I have more energy and a clearer head now. I have posted before about skin conditions and pains going away very quickly. I must confess, I drank a few beers during treatment and didn't really change any lifestyle. The drug attacks the RNA of the virus, the liver is only the beneficiary of less virus attack. My cholesterol has dropped, my appetite has increased and I have actually lost weight around my belly. I have nice dreams at night and wake up refreshed, rather than before with the fatigue. I hope this inspires anyone who is feeling like the treatment is getting the better of them. STAY THE COURSE!!! This stuff will improve your quality of life and will work! Let's all be winners.
Title: Re: Harvoni Side effects
Post by: Wolffeathers on August 12, 2015, 08:48:56 pm
I'm on week 7 of Harvoni and Ribavirin.. My vl was undetectable at week 3... So that was great news, but on the down side I came down with shingles.. I'm doing well and think it's do to being on gabapentin.. But had to take another antiviral med... RBC is way down. So I don't have any energy, legs like rubber... Doc says of it gets any lower they may give me procrit.. My attitude is good, all though the meds mess with my mind at times. Please every one stand tough it.. God Bless is All..
Title: Re: Harvoni Side effects
Post by: redcat36 on August 12, 2015, 09:20:13 pm
Hi everyone, since my last post I've had another Fibro Scan with different machine and different operator and the result is the same - F4.  I've elected to go ahead with treatment beginning August 27 and lasting 12 weeks.  Good news is, my insurance will cover all but $2800.  Even if it didn't cover it, I would opt for treatment anyway as I'm on the ragged edge of compensation/decompensation.  So, wish me luck.  I'll be on the site reading and sharing during my treatment.  Thanks to all who have posted here, and continue to share their experiences.
Regards,
Larry
Title: Re: Harvoni Side effects
Post by: Lynn K on August 12, 2015, 09:33:38 pm
have you checked with My support Path? They provide co payment assistance

https://www.harvoni.com/support-and-savings/co-pay-coupon-registration?evo_source=MYSUPPORTPATH&_ga=1.236860617.973567089.1408674970

Eligible patients may pay no more than $5 per co-pay for HARVONI

We believe that cost should not be a barrier to receiving treatment. That’s why the makers of HARVONI offer a co-pay coupon. If you are eligible, you may pay no more than $5 per co-pay. Need a replacement coupon?

Please note the following:

    You are not eligible if you are enrolled in a government healthcare prescription drug program such as Medicare Part D or Medicaid. This includes when you are in the Medicare Part D coverage gap known as the "donut hole."
    The HARVONI Co-pay Coupon Program will cover the out-of-pocket costs of your HARVONI prescriptions up to a maximum of 25% of the catalog price of a 12-week regimen of HARVONI. See Terms and Conditions below.

Check your eligibility

*Are you a current resident of the 50 states, District of Columbia, Puerto Rico, Guam, or the Virgin Islands?
 Yes No

*Are your prescriptions paid for in part or in full by any state- or federally funded program, including but not limited to Medicare or Medicaid, Medigap, VA, DOD, or TRICARE? Please note that Medicare Part D enrollees, while in the prescription drug coverage gap (the "donut hole"), are not eligible for the co-pay coupon.
 Yes No

*If you begin receiving prescription benefits from such state- or federally funded programs at any time, you will no longer be eligible to use the co-pay coupon. Do you acknowledge your agreement with this statement?
 Yes No
Title: Re: Harvoni Side effects
Post by: Patience on August 12, 2015, 10:56:20 pm
I'm on week 7 of Harvoni and Ribavirin.. My vl was undetectable at week 3... So that was great news, but on the down side I came down with shingles.. I'm doing well and think it's do to being on gabapentin.. But had to take another antiviral med... RBC is way down. So I don't have any energy, legs like rubber... Doc says of it gets any lower they may give me procrit.. My attitude is good, all though the meds mess with my mind at times. Please every one stand tough it.. God Bless is All..

Wolffeathers - I was given Procrit when I was in treatment in 2005 and my red blood count fell really low due to Ribavirin. It was a miracle! It made so much difference. So if you have to have it, it should help those rubbery legs a lot. I was short of breath and could hardly make it up the stairs and had to lie down when I did,  but Procrit was a Godsend for me. Hope your shingles clear up - you definitely did not need that - and that you start feeling better soon. Just knowing that you've no more virus to be detected will keep you going!
Title: Re: Harvoni Side effects
Post by: concerned father on August 13, 2015, 09:53:00 am
My daughter will be starting her treatment in two weeks.  I hope all goes well.
Title: Re: Harvoni Side effects
Post by: gnatcatcher on August 13, 2015, 10:13:10 am
You can be sure a lot of us on this thread are rooting for your daughter.

I've started week #6 of Harvoni and have had only very minor side effects, including the positive effect of having more energy. My gastroenterologist's CNP/DNP colleague has supervised >300 patients on Harvoni and reports that they've done beautifully and no one has had to quit because of side effects.
Title: Re: Harvoni Side effects
Post by: concerned father on August 13, 2015, 10:17:41 am
You can be sure a lot of us on this thread are rooting for your daughter.

I've started week #6 of Harvoni and have had only very minor side effects, including the positive effect of having more energy. My gastroenterologist's CNP/DNP colleague has supervised >300 patients on Harvoni and reports that they've done beautifully and no one has had to quit because of side effects.

Thank you :)
Title: Re: Harvoni Side effects
Post by: Wolffeathers on August 13, 2015, 07:48:28 pm
Thanks for sharing about the procrit.. That will really be a good boost for me.. The shingles is doing very well and healing quick.... My heart goes out to all that had to go thru this disease... God Bless you All
Title: Re: Harvoni Side effects
Post by: Dudleyandme on August 16, 2015, 12:52:07 pm
hello everyone, I'm new here. I started Harvoni 8 days ago, I'm on an 8 week treatment. I take it at 10:00am each day and by 11:30am sharp it hits me like a truck every time. I get this feeling like I'm going to faint, extreme nausea, extreme fatigue and mild headache. I sort of feel like I'm drowning for the first few hours, but by 5pm it starts to lift, thank goodness. I'm drinking a ton of water, I'm eating a full meal before I take my pill, I have a fruit and veggie juice mid afternoon.  I get to bed just before it hits and stay there until dinner time. I'm wondering if this will get better, it's harder than anticipated  :-\.
I'm also not sleeping at night and sadly my last two Dr appointments have been rescheduled by the Dr. Office so I can't talk to them about it.

Fibroscan- F3
Viral load- 4 mill

Laurie
Title: Re: Harvoni Side effects
Post by: Lynn K on August 16, 2015, 01:32:50 pm
Can you call your doctor's office and at least speak with the nurse? That is one of the reasons they are there for this sort of thing.

Or you could call My Support Path they also have nurses available to talk to about your symptoms.

http://www.mysupportpath.com/help-along-the-way

A 24/7 help line with nurses on call to provide answers and assistance

 1-855-7-MYPATH (1-855-769-7284) to learn more about resources that are available to help patients along the way toward treatment completion

Best of luck to you I hope you are feeling better soon hang in there

Lynn
Title: Re: Harvoni Side effects
Post by: MrSimple on August 16, 2015, 02:09:05 pm
Hello everyone

I am new to this thread and was wondering if people who have gone through some of the side effects of Harvoni can help me out.

My mother is currently taking Harvoni and she just finished week three and is moving on with week four. Prior to this, she felt relatively fine aside from some tightness of the head and insomnia (She has always suffered from chronic insomnia)

In the past few days however, she seems to be experiencing more intense symptoms as she says that she has more severe headaches, feels dizzy at times, feels heat flushes throughout her body (Menopause like flushes) as well as some nausea.

I was wondering if anyone knows why these symptoms started intensifying after three weeks and if they tend to get better or worse. I also want to know what people do/take to cope with strong headaches, nausea and dizziness. Thank you for your time and your responses.

-Best wishes to all the fighters
Title: Re: Harvoni Side effects
Post by: KimInTheForest on August 16, 2015, 02:36:15 pm
Hi Mr. Simple, and welcome to the forums! So sorry to hear about your mom's problems. Others here will no doubt chime in on other things you have mentioned. But with regard to dizziness, do check her blood pressure. A drop in blood pressure can certainly cause dizziness. A number of people on these forums have reported an increase in bp while on Harvoni (didn't happen to me). I am not sure if increased bp could also cause dizziness. But if you have a home bp machine or even those bp testing booths in drugstores, check your mom's bp.

As for the general trend and whether her side effects will get better or worse… these drugs seem to affect everyone's body differently in terms of side effects, making it very hard to predict.

help her stay focused on the cure she will almost certainly achieve. that what gets most of us through any difficulties.

best of luck with it all! :)

kim
Title: Re: Harvoni Side effects
Post by: gnatcatcher on August 16, 2015, 04:13:22 pm
Laurie, in addition to what Lynn K. suggested, the specialty pharmacy through which you obtain your Harvoni may also have nurses and/or pharmacists whom you can call with your symptoms and questions. Mine does, and they have been very helpful.
Title: Re: Harvoni Side effects
Post by: gnatcatcher on August 16, 2015, 04:25:54 pm
Mr. Simple, I can add only one thing to Kim's excellent answer. Quite a few people on this forum have found that staying well hydrated can minimize or eliminate the headaches. A rule of thumb several have suggested is one ounce of water per day for each two pounds of body weight. For example, if your mother weighs 128#, that would be 64 ounces (8 cups) per day. She may even need to go above that. I'm in week 6 of Harvoni; beginning in week 3 I had to increase the fluids above the formula because of other side effects.

Best wishes to you and your mother.
Title: Re: Harvoni Side effects
Post by: philsky on August 16, 2015, 04:37:36 pm
you know that I felt a change at day 2. I felt clear headed and more energy. I think that some effects are due to the lowering of fats and the normalizing of liver function. I don't think the drug itself is doing anything, I think the re-adapting of the body is to blame. The drug targets the rna of the virus which is specific. I hate hearing about folks having a hard time with harvoni. I had no sfx at all. lucky me. stay the course and don't be discouraged......of course check with your G.P. or gastro, but I am sure these sfx are transient and will go away soon.  good luck everyone, I hope all get better.
Title: Re: Harvoni Side effects
Post by: Dudleyandme on August 17, 2015, 07:39:12 pm
Perhaps it's because I'm Canadian, but our doctors and specialists offices do not have nurses. The only place with nurses here is in a hospital, which by the way have at least an 8 hr wait time in an emergency. I may try calling gilead, but the last time I called them the nurse just kept saying " I'm not sure" . We also do not have any specialty pharmacies that I'm aware of , just regular store pharmacies. I do not know who filled my prescription as I received it straight from my doctors office.
Title: Re: Harvoni Side effects
Post by: gnatcatcher on August 17, 2015, 08:14:23 pm
Perhaps it's because I'm Canadian, but our doctors and specialists offices do not have nurses. The only place with nurses here is in a hospital, which by the way have at least an 8 hr wait time in an emergency. I may try calling gilead, but the last time I called them the nurse just kept saying " I'm not sure" . We also do not have any specialty pharmacies that I'm aware of , just regular store pharmacies. I do not know who filled my prescription as I received it straight from my doctors office.
Laurie, sorry, I didn't realize that you are in Canada. Here in the States expensive medicines often go to a specialty pharmacy, which ships them to the patient.

Going back to your original message, you mention that you've eaten a full meal before taking Harvoni, and by 90 minutes later you get extreme nausea. Since Harvoni can be taken on an empty stomach (or a full one or anywhere in between), have you experimented with taking the pill several hours after your last intake of food to see if that lessens the nausea? I've been taking mine at 6 a.m. with only a glass of water, then I eat two hours later. I'm not saying that's necessarily the best way, I'm just saying that eating on an empty stomach is "legal" and hasn't caused me any problems.

However it happens, I hope you can soon find a way to minimize or eliminate those strong side effects.
Title: Re: Harvoni Side effects
Post by: Vicky on August 17, 2015, 11:19:59 pm
Hi all!  Thought I'd give an update!  I am 65, new liver 3 years ago, had hep c, cirrhosis, fatty liver disease, and liver cancer.  Because I had a transplant, I was on Harvoni for 24 weeks.  Since I did 3 different years of interferon, etc. treatments, I was sure I'd again have horrible side effects.  I kept waiting for the ball to drop.  I did have pretty minor side effects, major fatigue, major, major brain fog, minor aches, and that was it.  None of the evilness of previous treatment.  At 8 weeks I was undetectable, and now at 28 weeks I still am.  Got all my digits crossed it will stay away.  I felt pretty lousy for about a month after treatment, but have started to be able to focus and have more energy than the past 20 years.  I now make plan and succeed!  Have been doing traveling, concreting, saw sir Paul in June, and I have travel plans for sept and oct!  I am kicking ass and enjoying life to its fullest every day!  Best wishes to us all!
Title: Re: Harvoni Side effects
Post by: Mike on August 18, 2015, 12:04:07 am
That's great news Vicky!

Looks like the long Hep-C road has come to end for you!!!!

Best wishes, Mike
Title: Re: Harvoni Side effects
Post by: Vicky on August 18, 2015, 12:11:42 am
Thanks mike!  I wanted to share my good news!

Title: Re: Harvoni Side effects
Post by: Scoutdoy on August 18, 2015, 12:43:30 am
Congratulations Vicky!! You have slayed the dragon.  I think sometimes people feel like shit for so long that they forget what it's like to feel normal.  I was talking to a friend of mine and he was saying that even though he is cured his body is hurting...I reminded him that for 25 years he blamed it all on the Hep C...I suggested to him that we are all aging and he is 25 years older now, accept the fact that your aging and your body is going to hurt from that also. Stop blaming it all on the Hep c.  25 years of construction work takes its toll on joints and muscles also
Title: Re: Harvoni Side effects
Post by: Katie on August 18, 2015, 01:04:27 am
I beg to differ with your reasoning Scoutdoy.  I suppose there could be truth in what you say for some people, but many of those of us that have had ill effects after treatment are things they have never experienced before.

I am definitely in worse shape than I was before treatment and certainly while on treatment as with Harvoni I felt better than in years and remodeled 2 rooms during that time, from top to bottom.  In 2013 I painted the siding of my house by myself and 2014 I painted the garage, stained the deck  and much more.  Now I am so weak I have to force myself to do basic daily activities.  I have some respiratory issues as well but the severe fatigue is horrible and in spite of sleeping well I wake up exhausted and just want to stay in bed.  I thought I was getting a bit better but today it struck me down again.  This has nothing to do with normal aging.  It is a post treatment side effect, and I have been feeling this way for 6 months now.  It is not something I am making up or making false claims.  All my bloodwork is perfect and it has my doctor stumped.  I really want to get my vibrant, energetic personality back.  I miss me.

Just wanted to let you know you shouldn't make anyone feel their issues aren't valid because more than likely they are.

I am glad you are feeling good.  That is wonderful!  And Vicky!  A big congratulations to you!

I want everyone to love life again because it is a true gift!

Katie
Title: Re: Harvoni Side effects
Post by: Scoutdoy on August 18, 2015, 02:18:56 am
I didn't mean to make it sound like their issues aren't valid at all. If it came across that way I certainly didn't mean for it to. I have been dealing with severe fatigue and joint issues myself for the last 15 years and it sucks..  All I meant to say was that some of the effects may not be from the Harvoni treatment. It could be that some of the effects are from the body adjusting for other reasons. I don't think there is enough data to show what the long term effects of this treatment may cause many of us either long term.
Title: Re: Harvoni Side effects
Post by: Cityliver on August 18, 2015, 02:32:38 am
 I started Harvoni 5 days ago .   The most noticeable side effects was a sudden rush of energy and flush feeling in face on the first night, 15 hours after first dose.    It was very intense while at dinner with friends, but hasn't happened again since.  I also noticed feeling emotionally sensitive the first few days .   Not sure if this is due to treatment but I'm aware of my joints seeming to be freed up .   Might just be in my head but joint pain is a symptom of the hep c I've noticed since being infected  just over a year ago.   I'm drinking more water as everyone seems to suggest and otherwise side effects are virtually zero .   I'm so grateful to be living in a time when this disease  is now being cured.
Title: Re: Harvoni Side effects
Post by: Katie on August 18, 2015, 02:45:34 am
I didn't mean to make it sound like their issues aren't valid at all. If it came across that way I certainly didn't mean for it to. I have been dealing with severe fatigue and joint issues myself for the last 15 years and it sucks..  All I meant to say was that some of the effects may not be from the Harvoni treatment. It could be that some of the effects are from the body adjusting for other reasons. I don't think there is enough data to show what the long term effects of this treatment may cause many of us either long term.

No problem Scout.  I am probably a bit sensitive just because I am so out of sorts and was looking forward to feeling good. I have had some definite improvements too and many of the issues I had with Hep C are gone.  They just didn't prevent me from being productive like I am now. Six months of feeling crappy starts to work on you!   Today has  been rough and now my cat has an abcess and I have to take him to the vet tomorrow!  HA!  Another stressful event to deal with...poor baby!

I didn't mean to take it out on you and I have always been a positive person and not one to complain.  I always remind myself of those who suffer so much more and am grateful.

Have a good evening and I wish you well.  We all deal with what we have to and life goes on.  I have no doubt it will improve.

Katie
Title: Re: Harvoni Side effects
Post by: Defendo on August 18, 2015, 09:23:02 am
I have not posted to this forum in months.  I started Harvoni on April 1. My treatment was to be for 24 weeks.  I had some "undocumented" sides during the first two months, but I was able to manage them.  At the end of June, I was undectable.  However, my blood pressure was elevated and continued to climb.  I did not monitor my BP during the first few months, but in April I went to the dentist an my BP was 170/90.  But when I went to my GI doctor in May it was normal.  I was considered "pre-hypertensive" for years, but always was able to keep my BP under control.

Here is the THING!  Starting in mid-July my BP became chronically high and everything I did to try to lower it and control it was ineffective.

In June I also started to have nose bleeds at least twice a week and they got worse and harder to stop as time went by. 

In my 18th week, I had to go to the emergency room because I was unable to stop my nose bleed after 2 hours of trying. My BP was 265/100.  I was given "rescue medication to bring my pressure down to levels where the doctor could couterize my nose.

My BP remained high despite efforts to bring it down and I began experiencing daily nose bleeds, horrible headaches and blurred vision.  I told my doctor I believed the Harvoni was causing my BP to raise uncontrollably.  Despite increases in BP medication, my BP would not come down. 

I had to go to the emergency clinic again at week 19.  Afterwards I made the decision to stop taking Harvoni because it was the primary suspect in my mind.

I stopped on August 14th, but continued to have blood pressure problems through-out the weekend.  But by Monday afternoon my BP finally began to lower.  Today it is much lower and becoming more consistant.  Previously I was experiencing periods of extremely high spikes.

The half life of Harvoni is around 48 hours, so it took about 2 days to reduce the amount of Harvoni in my system to 50%.  By Thursday I should have less than 25% of the drug in my system.

The fact that my BP has improved only by stopping Harvoni has convinced me 100% that Harvoni has cause this extremely dangerous situation. 

My GI nurse is not happy I stopped and told me that I would not be able to resume. That is fine with me because I do not want to develop kidney, heart or eye problems.

I believe this is not a common side of Harvoni, but Ihave read where some other patients had similar experiences. 

So for those of you on treatment, please monitor your blood pressure daily.  Most people do only 12 weeks and I tolerated 12 weeks OK.  But it was after the 15th week that the problems began to really manifest.

My nurse also said that since I stopped before completing the 24 weeks there was no guarantee that I would remain undectable at the end of the next 6 months. That kind of pissed me off because there is no guarantee even if I finished the 24 weeks.

I was undectable at 12 weeks and continued on Harvoni for approx 6 more weeks. So I hope that is enough. But if the dragon arises again, so be it.  It simply was not worth the risk to me.  The risk far outwieghed the benefits considering that I was undectable.  Time will tell.

But I just want other to be aware and be careful.  There is no doubt this is a miracle drug that can cure this hideous disease. But for some of us, it can also present other critical health issues.

Title: Re: Harvoni Side effects
Post by: gnatcatcher on August 18, 2015, 10:45:35 am
Defendo, your nosebleeds I can really sympathize with. (I had two massive, unstoppable posterior nosebleeds in November, nine months before I started Harvoni. I haven't had any nosebleeds during my nearly six weeks of Harvoni; knock on wood I wont have any.)

Your advice to monitor BP is wise. In fact, because my BP shot up during the two hospitalizations for the nosebleeds, a nephrologist actually wrote a prescription for me to get a home BP machine. Interestingly, my BP at home is always either normal or pre-hypertensive (so far, Harvoni hasn't changed that, again knock on wood). But it is now always sky-high in any medical setting. (I bring the home machine in and check it against my PCP's machine, so he and I know the home readings aren't falsely low.) Having the home machine has taught me that I experience freeze-fight-flight PTS in medical settings (not surprising, since three treatments or procedures have harmed me, starting with getting Hep C from transfusions).

I believe you that Harvoni has been harmful to you, even though SEs that you have experienced aren't common. After all, plenty of people take Zantac without any problems, yet when I did, it gave me excruciating headaches that felt like my entire brain was encased in a metal vise that was being tightened, tightened, tightened. Fortunately, since I was taking only one Zantac a day, I noticed a pattern to the time each headache started, intensified, and finally abated. When I delayed one Zantac pill by 12 hours, the identical headache pattern was also delayed by 12 hours, and when I ceased taking Zantac, the headaches did not recur (and I have never again had a headache anywhere close to that excruciating).

You've had so many SEs, it's not so easy to prove that Harvoni caused any or all of them. If I were in your shoes, I would have stopped, too. I sincerely hope your SEs go away entirely and your VL remains undetectable.
Title: Re: Harvoni Side effects
Post by: slats1056 on August 18, 2015, 12:05:06 pm
  Hey everybody,  Catching up on posts since being slammed with sides since Yesterday morning. Thanx for the chuckles gnatty , helped bring me out of the deep dark place back into the light to keep up the good fight.
  Defendo, sorry about Your sides & problems. I sympathize with You.

 BTW, Sunday I blew up My pedal powered antique laptop while try to get some info. off one of the forums. Problem is I can't locate where T was at!!!! Subject was about unpublished side effects of Harvoni. I was trying to e-mail to get a copy & now cannot find thread.  e-mail on forum was something like lifewithin , lookwithin. maybe livewithin?????? Sound like something defend might like to read. ! know I do!!!! Still looking if anyone remembers see it!!!
Title: Re: Harvoni Side effects
Post by: Defendo on August 18, 2015, 01:04:33 pm
It was been 96 hours since I stopped taking Harvoni and my blood pressure is declining rapidly.  I still am getting a very occasional spike, then it returns to normal I have kept hourly records of my BP with charts and the trend is definately downward.

What was really scary is that in the last week before I stopped my Diastolic number continually went over and stayed at 100 - 110.  That is an indicator of vascular constriction which causes the heart to overwork. It can also effect your renal function.

So everyone, please watch you BP while on tx.
I am now praying that I will remain undetectable in 6 months. 
Title: Re: Harvoni Side effects
Post by: gnatcatcher on August 18, 2015, 01:11:05 pm
Tommy, could this list of all Harvoni side effects during the clinical trials be what you're looking for? http://www.gilead.ca/pdf/ca/harvoni_pm_english.pdf (see page 9). Five people mentioned it on various threads of this forum.

Defendo, page 7 of that document notes, "The proportion of patients who permanently discontinued treatment due to adverse events was 0%, <1% and 1% for patients receiving HARVONI for 8, 12 and 24 weeks, respectively." I remember that several people on this forum started having an especially rough time in week 9. Sorry you ended up in the 1% of 24-weekers who had to discontinue treatment. Glad your BP is rapidly returning to your baseline.
Title: Re: Harvoni Side effects
Post by: Defendo on August 18, 2015, 01:55:54 pm
gnatcatcher,

Thanks for the information.  I do believe that the numbers will prove to be higher in the general population. The problem with clinical trials is the very limited number of participants and in the case of Harvoni, the trials were "fast tracked". 

Pharmaceutical companies also tend to pick and choose participants.  I have found other patients who have experience significant spikes in blood pressure. So I think this is more common than reported.  It will be very interesting to see how the documented side effects change after this drug has been used for several years in the general population.   

But the bottom line is that this drug did result in the dragon being undetectable.  Hopefully he is dead and not hibernating somewhere deep in my system. 

I would like to know what the numbers are for people who were undetectable when they stopped Harvoni and then became detectable again after 6 months. That is my primary concern now.  Does anyone have this kind of information?
Title: Re: Harvoni Side effects
Post by: redcat36 on August 18, 2015, 08:23:02 pm
Thanks for the information Lynn, I did check with Gilead and since I have Senoir Care Advantage with Kaiser, it is a Medicare Plan using Part D for drugs.  I will be in the "hole in the donut" space so coupons are not offered.  I'm told my total payout will be around 2.8K.  Not too bad.  I will start treatment on August 27.
Regards,
Larry
Title: Re: Harvoni Side effects
Post by: slats1056 on August 19, 2015, 10:26:57 am
HELLO all You Happy Heppers out there who are waiting on their SVR & those that have already achieved it!!!!
 Gnats , Doesn't look familiar but I'll check it out. Btw, as soon as I get a little more rested & can concentrate I'll be updating My signature with latest labs. What they didn't lose anyway!!!! But, that is another story for later. Apparently the fog was so pervading that I lost a couple of posts that I had keyed.
 Body is feeling great today. A little agitation going on in the old liver. Second set of sides have diminished greatly , except the crawling skin & some liver quivers. Mild headache, but everything seems to be back to abnormal as usual. I have scaled back fluid intake to about an ounce per pound through out the day. Seems to be that sweet spot I have been looking for!
 I have noticed darkening urine (not bad but kind of surprises me with amount of h2o) with an acrid odor. Virus die off???? Hot flashes ( Male menopause LOL )???? Body feels good , but brain fog & concentration problems persist. More so than the abnormal amount! Keying is a chore , thank God for spell check ( No comments from the cheap seats Gnatcatcher! ) If I didn't know better it's a flair up of the virus! 

 Thanx a million for the support when I was down everyone. I really needed the moral support this time!!!

 P.S. If I were rich the first thing I would do is Buy out Gilead & start giving the Meds. to everyone that couldn't afford it or were denied & given the run around just to pissed off the big business establishment!!!!!!!!!!!!
 
Title: Re: Harvoni Side effects
Post by: Patience on August 19, 2015, 10:52:17 am
Slats - I've had 3 fairly lengthy posts simply disappear as I was finishing them, so I've learned to  key in a notes page and copy it into the forum form. Ain't technology great?!

Glad to hear you're feeling good today and that you're back to abnormal again. How will we ever recognize normal if and when it happens? Can't wait to try!  10 more days of orange diamonds for me and then ???? Will they have chased away the Bad Guys forever? I sure hope so - for myself and for everyone else here who is struggling against them.
Title: Re: Harvoni Side effects
Post by: slats1056 on August 19, 2015, 06:33:41 pm
Thanx Patience. I definitely am not a techno-geek. I know just enough about computers to get into trouble! Man, ten more days is great. Then it's count down to SVR!!!!!!!!!!
Title: Re: Harvoni Side effects
Post by: MJ82 on August 22, 2015, 10:35:53 am
[deleted]
Title: Re: Harvoni Side effects
Post by: Scoutdoy on August 22, 2015, 10:50:54 am
My I am no doctor but I do believe that one can drink too much water. Ask your doc
Title: Re: Harvoni Side effects
Post by: Defendo on August 22, 2015, 01:42:02 pm
Hello everyone,

As I posted last week, I began experiencing very high blood pressure which also spike to dangerous levels during week 14 of my treatment with Harvoni.  By week 18-19 not only was my Sys BP runing in the 190 to 220 range ( a few spikes to 270) but my DIA BP began raising and spiking too. At first it was just the SYS BP, but last week my DIA BP was staying between 100-110.  Unfortunately my Liver doctor and nurse were not much help, stating that the HP was not a documented side of Harvoni.

Besides the uneasy feeling of the high BP I began developing tremenous anxiety regarding the risk of stroke or heart attack.  My primary doctor increased my BP medicine in hopes of lowering it, but it only went higher.  During the week 14 through 19 I also expeinced chronic massive nose bleeds and it took a mininium of an hour to stop them.  I had to go to the emergency clinic twice.

I finally had enough and I stopped taking Harvoni at week 19, (August 13).  which my liver doctor disapproved. But I know my body and we have to make our own assesment sometime.

But my High BP did not improve and I had another massive nose bleed yesterday. My doctor added an ACE inhibitor to my beta blocker and I can not believe how much better I feel today.  So much energy and normal blood pressure for the first time since April.  I do not know if the ACE inhibitor would have help while was still taking the Harvoni or not, but I can not dwell on that.  It is what it is.

But I do believe that Harvoin is responsible for the increased BP and especailly the culprit in causing vascular constriction which really began to manifest when my DIA numbers when way up.  Just a theroy now, but it is the only thing that makes any sense in my situation.

ANYWAY, THE PURPOSE OF THIS POST IS TO TRY TO GET SOME DATA ABOUT MAINTAINING A SVR AFTER STOPPING TREATMENT.

I was barely dectectable at the end of 8 weeks, <15 Detected.
At the end of 12 weeks I was undetectable.  I did another 6 weeks before I had to stop.

So my question only pertaines to those patients who were prescribed a 12 week course of treatment, not 24 weeks.

Does anyone have any numbers that reflect the percentage of patients who achieved a SVR after being barely dectactable at 8 weeks, but undectable at 12 weeks (end of treatment).

I would really appreciate any information.
Title: Re: Harvoni Side effects
Post by: Scoutdoy on August 22, 2015, 01:56:10 pm
I recall reading several posts from people who had the numbers you are looking for..you might want to ask moderator Lynn
Title: Re: Harvoni Side effects
Post by: Defendo on August 22, 2015, 01:58:39 pm
Thanks  Scoutdoy,

Lynn,

Do you have any information?
Title: Re: Harvoni Side effects
Post by: gnatcatcher on August 22, 2015, 03:24:50 pm
The thread that may have some people who fit the profile of your question is this one: "Re: After tx (POST) 4wk or 12 wk SVR results (Harvoni only) - CHECK IN HERE PLEASE!" Keep in mind that it is not a scientific sample, since the respondents are self-selecting and may therefore under- or over-represent the SVRs in the total population who have taken Harvoni. Also, it's been only 10 months since Harvoni was approved in the U.S. based on the clinical trials.

"I do not know if the ACE inhibitor would have help while was still taking the Harvoni or not, but I can not dwell on that.  It is what it is."  Exactly. And what will be is what will be. Looking through that other thread may only lead to dwelling. No one has a crystal ball that could reveal your own eventual SVR results now.

As I wrote earlier, "I sincerely hope your SEs go away entirely and your VL remains undetectable." And I wish you peace.

Gnatty
Title: Re: Harvoni Side effects
Post by: Hopeful123 on August 23, 2015, 03:11:09 am
This med has changing side effects. I used to have the stomach issues mainly at beginning but now towards the end my eyes are soooooo itchy. My muscle aches are a lil annoying too but that's about it. Can't believe the stomach issue went away that was great! It got pretty bad the first 4 weeks, and then just went away...I'm thinking about asking my eye dr for eye droops cause they are just insanely itchy now and I have these big bags under my eyes most of the time which I'm taking as I look more tired than I feel. So I guess that a good thing in a way:/
Title: Re: Harvoni Side effects
Post by: Lynn K on August 23, 2015, 04:01:02 am
I agree with gnat catcher that thread has lots of our data for various scenarios. But bottom line the only test that matters is 12 weeks post and we all hold our breath till that date.

Everything I have read says there is no correlation with being not detected at any particular time on treatment and eventual SVR 12. In fact really on treatment testing is basically only to confirm patient compliance.

Almost everyone if not everyone at least gets to less than 15 detected if not virus not detected very quickly. The key is taking the meds long enough to ensure the virus is gone.

I wish you the best you do have a great chance of making it.

When will you be 12 weeks post?

Lynn
Title: Re: Harvoni Side effects
Post by: rp616 on August 23, 2015, 11:08:59 am
I am getting my Harvoni tomorrow. Is there a good or bad time of day to take this?
Title: Re: Harvoni Side effects
Post by: Lynn K on August 23, 2015, 11:42:40 am
Take it when you can consistently remember to take it is the best time of day. Remember to keep adequately hydrated and this does not have to be all water just 8 or so 8 ounce glasses of fluids.

Good luck on treatment

Lynn
Title: Re: Harvoni Side effects
Post by: gnatcatcher on August 23, 2015, 11:47:51 am
As far as the medicine working its magic, any time of day is good. Quite a few of us have found that we have extra energy while on Harvoni, so taking it early in the day allows us to take advantage of that energy without it becoming super hard to fall asleep at night. Others, however, feel more fatigued while on Harvoni; taking it in the evening is perhaps better for them. You can't tell ahead-of-time which group you'll fall into, but you can gradually switch your time to one that works better once you know. Likewise, you can experiment with taking Harvoni with or without food, but (as Lynn said) be sure you drink plenty of (nonalcoholic) fluids throughout each day. I've found Harvoni needs 10 cups/day for my body, but YMMV.

Here's to your future cure (glug glug)!   -Gnatty
Title: Re: Harvoni Side effects
Post by: slats1056 on August 23, 2015, 11:49:12 am
 rp616 Great news, hop on the train. Seems Med time varies person to person. I take mine early AM , others evening. You might have to play with the timing a little, just don't miss a dose. Very important to keep med level constant in Your system. Good Luck , and Welcome to the Crazy Train! BTW What is Your treatment? 8,12, or 24 weeks? Harvoni alone? Take the time to check out the forums & surely You will find someone that matches Your scenario. This place is HUGE & far reaching with so much info,help, & support it can be daunting!!!! Don't despair ,keep reading & post Your questions & concerns.
  Totally agree with Lynn & Gnattys' postings. Extra tests will only drive up the health care costs also. Meaningful results are EOT ,not during treatment. But , damn what a confidence boost to see those results.
 Hey Gnatty , how the heck are You?? You always check up on everyone else so now that I'm levelling off some , it's time to return the favor. Your shoulders must look like Atlas holding up the world. You & Lynn should be nominated for Sainthood what with all the time, info, kind words, and above all the wellspring of knowledge You two supply on a regular basis. Thanx to All the other unnamed people supplying much needed info. & endless support when us mere mortals need it!!!!!!!
  Hopeful , I know exactly what You mean about the changing side. First 4 weeks changed suddenly & without warning in week 5! Keep up the good fight & Happy Trails To You!!

  Parting shot, IT IS HARD TO FLY WITH THE EAGLES WHEN YOU ARE ROOSTING WITH THE TURKEYS! BUT DAMN DON'T THEY TASTE GOOD?
 
 
Title: Re: Harvoni Side effects
Post by: rp616 on August 23, 2015, 12:12:19 pm
Thanks for the advice. I will be on a 24 week treatment. Think I'll start taking it in the evening and see how it goes.
Title: Re: Harvoni Side effects
Post by: 2rivers on August 23, 2015, 12:18:30 pm
I found the evening much better than morning. I slept well and had lots of energy the next day. Towards the EOT I accidentally missed a dose and had to switch to taking my pill in the morning. I found that I crashed around 3 PM and pretty well had to have a nap.

My 4-week and 8-week tests showed no detectable virus. I will do my 12 week post-treatment blood work in October. Here's hoping...
Title: Re: Harvoni Side effects
Post by: Vicky on August 23, 2015, 02:01:23 pm
I finished my 24 wk treatment (since I had a transplant) a few weeks ago.  I took Harvoni in the morning with my other pills and with lots of water.  Had very minor side effects, and at this time I am virus free.  Hope it stays that way.  Good luck!
Vicky
Title: Re: Harvoni Side effects
Post by: slats1056 on August 23, 2015, 02:07:30 pm
 YESSSSSS Vicky! Chalk another on up for the good guys! Good Luck & Good Health! Here is wishing You SVR!!!!
Title: Re: Harvoni Side effects
Post by: Scoutdoy on August 23, 2015, 03:03:57 pm
I finishished my first bottle of Harvoni today...2 more to go. I have to say I am a little stressed about the blood test I am taking on Tuesday for my 4 week viral count. I feel so good since I started taking this that I am going to be shattered if the test doesn't come back good

Scout
Title: Re: Harvoni Side effects
Post by: KimInTheForest on August 23, 2015, 03:17:41 pm
I finishished my first bottle of Harvoni today...2 more to go. I have to say I am a little stressed about the blood test I am taking on Tuesday for my 4 week viral count. I feel so good since I started taking this that I am going to be shattered if the test doesn't come back good

Congrats on reaching the 1/3 mark, Scout! :) Don't stress about your upcoming blood test. In all likelihood you will be getting good news - whether that is undetected or nearly undetected. I couldn't believe how much better I felt (and so quickly!) once the Harvoni started knocking down the virus. I literally had forgotten what it was to have that kind of energy and wholeness and mental clarity.

best,
kim
Title: Re: Harvoni Side effects
Post by: KimInTheForest on August 23, 2015, 03:19:10 pm
I finished my 24 wk treatment (since I had a transplant) a few weeks ago.  I took Harvoni in the morning with my other pills and with lots of water.  Had very minor side effects, and at this time I am virus free.  Hope it stays that way.  Good luck!
Vicky

Congrats Vicky! And good luck with your future test results.

kim :)
Title: Re: Harvoni Side effects
Post by: slats1056 on August 23, 2015, 03:20:55 pm
  Not to worry! EOT & follow ups is where the proof is in the pudding My fellow Warrior. Don't sweat the small stuff , it only causes more stress which You don't need!
Title: Re: Harvoni Side effects - itchy eyes
Post by: BDK on August 23, 2015, 06:52:02 pm
I just read that someone posted about itchy eyes - I'm on week 6 of Harvoni, and the lower lid of my right eye is itching like crazy, but only intermittently.  Started a few days ago.  No redness or sign of a stye developing.  Anyone know what this might be - seems a very odd side effect and one I would not even have thought was a side effect until I read that someone else here was experiencing it.  Thanks!  B
Title: Re: Harvoni Side effects
Post by: Patience on August 23, 2015, 07:56:44 pm
I've experienced eye problems - dryness, itching, and blurry vision for the time that I've been on Harvoni. I had these before, but they've been worse on treatment. I only have six more pills to go and I'm really hoping that things will improve when I stop. I know I'm not the only one to have side effects involving eyes. Hope yours clears up and gets better soon. There's no way of knowing what special treats are in store for us during this adventure! Keep on keeping on!
Title: Re: Harvoni Side effects
Post by: concerned father on August 24, 2015, 12:29:46 pm
I know this is probably not the best place to ask this question but I will ask anyway.  My daughter just received her 1st bottle of Harvoni today.  Is it suitable to store the medication in a daily container like the older generation is using to ensure they do not forget to take it.  It will be kept in a dark place.
Title: Re: Harvoni Side effects
Post by: gnatcatcher on August 24, 2015, 01:16:58 pm
That's what I wanted to do, but the medical professional who supervises Harvoni treatment here stressed that I'm to store the pills in the original bottle. The prescribing information that comes with the bottle says, "How should I store HARVONI? . . . Keep HARVONI in its original container. . . ." No reason is given, so I chalk it up to "an abundance of caution." My method of not forgetting is to keep a log. Every day when I swallow the orange diamond, I write down the time; I also record liquid intake and side effects (very few, mild ones, thankfully).
Title: Re: Harvoni Side effects
Post by: concerned father on August 24, 2015, 01:25:56 pm
That's what I wanted to do, but the medical professional who supervises Harvoni treatment here stressed that I'm to store the pills in the original bottle. The prescribing information that comes with the bottle says, "How should I store HARVONI? . . . Keep HARVONI in its original container. . . ." No reason is given, so I chalk it up to "an abundance of caution." My method of not forgetting is to keep a log. Every day when I swallow the orange diamond, I write down the time; I also record liquid intake and side effects (very few, mild ones, thankfully).

Thanks a million for the advice.
Title: Re: Harvoni Side effects
Post by: Lou66 on August 24, 2015, 02:44:41 pm
I started this morning Harvoni, I always take 1 pill of Orazepa(tavor) before go to sleep. I will try to reduce until zero.... Anyone take Tavor? Is dangerous for the therapy? Or reduce to 1mg is tollerate?
My english it's no good, sorry.
Title: Re: Harvoni Side effects
Post by: Mugwump on August 24, 2015, 04:11:27 pm
I know this is probably not the best place to ask this question but I will ask anyway.  My daughter just received her 1st bottle of Harvoni today.  Is it suitable to store the medication in a daily container like the older generation is using to ensure they do not forget to take it.  It will be kept in a dark place.
A cheap daily pill case that you refill weekly is what I did. That way if I took the med and then went back to bed I didn't have to count and do a month long tally just to ascertain if I had taken the pill that day. Only once did I miss taking the pill in the morning and all I did was switch to taking it in the evening for about 5-6 days until I could reclaim the cycle of taking it in the morning.

What Gilead recommends is that if you forget a pill then make sure that you take it later in the day. BUT do not take the pill closer than about 16 hours apart so if you take it 2-4 hours early for a few days you can reclaim the hours you missed if you missed  a single dose.

An accidental overdose of doubling up by taking two pills in quick succession should be reported to your DR immediately and there is a help line at Gilead that should also be called.

So the little daily pill box is a good idea, it helps to keep things straight. And Harvoni simply needs to be kept in a dry moderate environment and that is why there is a desiccant in the bottle and no need for refrigeration.

Funny but my clinic nurse was very specific to warn me against thinking the plastic thing in the bottle was something that you need to ingest! But I can understand that some people in their eagerness to get rid of the virus might have gulped down the silicon dioxide widget by mistake! LOL I just have to wonder if she had someone gulp one down by mistake!

Great to see your daughter is on the way to a cure and great job getting her treatment.

The very best to you and your daughter
Eric

EDIT;
As an aside if you do use something other than the original bottle like I did a good ideas is to keep it away from moisture. In fact I did not use our medicine cabinet in out bath room at all for this very reason! Logically it is necessary to keep the pills dry and out of an environment that can effect them. So if you do use something other than the pill bottle it needs to be only for short storage for immediate use.
Title: Re: Harvoni Side effects
Post by: TTSP on August 24, 2015, 06:26:45 pm
On the matter of bottle or pill case. I kept mine in the bottle. Everyone I talked to stressed the importance of protecting against light, heat, and moisture. I had to recount them a few times but found that having to do that kept my mind a little sharper. I also kept track on a wall calendar in my kitchen, On my food intake chart, and my exercise chart.

I understand that if you are alone and can't have someone check for you once in awhile this may be difficult. That being said, my memory has been better than that of my wife.

Best wishes to all.
Title: Re: Harvoni Side effects
Post by: concerned father on August 24, 2015, 09:09:48 pm
Thanks everyone, I can't wait for the day when her virus will be undetected.
Title: Re: Harvoni Side effects
Post by: rp616 on August 24, 2015, 09:21:12 pm
Started my first dose yesterday evening. BP went up to 160/90, but I think it is more psychological than physical. No other side effects so far.
Title: Re: Harvoni Side effects
Post by: Scoutdoy on August 24, 2015, 10:38:41 pm
RP, don't stress about the treatment. Drink lots of fluids and maybe you will have what they call the Harvoni high like some of are experiencing. Starting about the 4th day I got an explosion of energy, and it hasn't stopped yet. I am on day 29. Took my 1st pill of the second bottle. The pharmacy is sending my 3rd and final bottle to my house tomorrow. I get my 1st viral check tomorrow. Your gonna do ok. I did experience a slight headache the first couple of days so I changed the time of day to a couple of hours later. I take it at noon and haven't had a headache or any side effects since. Good luck

Scout
Title: Re: Harvoni Side effects
Post by: Dudleyandme on August 26, 2015, 06:59:29 pm
Started week three of Harvoni, ( no RIBA) still having major nausea, fatigue and headaches. Drinking a ton of water 60-80 oz a day! I've been taking a ginger gravol with every pill, which helps a little. Dropped 25lbs so far and can't afford to lose anymore as I'm now 105lbs at 5'5". I was reading about keeping it in its own container. I put one pill in an alarmed pill taker so I can carry one with me every day, I hope this is OK? I'm happy to hear some have had issues disappear as they get farther into treatment, as I'm getting tired of lying in bed all the time.
My twin ( who's a physio) came to stay last weekend with me. She said I was getting all the muscle twitches and pain from muscle atrophy as I was lying down too much and have lost too much muscle, so they they are literally dying! She got me up and going some exercise and it has helped. For those with this issue, try going for short walks and climbing stairs when possible.
I sure wish I could get a viral load test at 4 weeks as I'd love to know if this is working, but my doctor won't issue one until 4 weeks post treatment. So I'm in the dark...
Laurie
Title: Re: Harvoni Side effects
Post by: Mugwump on August 26, 2015, 07:28:06 pm
Started week three of Harvoni, ( no RIBA) still having major nausea, fatigue and headaches. Drinking a ton of water 60-80 oz a day! I've been taking a ginger gravol with every pill, which helps a little. Dropped 25lbs so far and can't afford to lose anymore as I'm now 105lbs at 5'5". I was reading about keeping it in its own container. I put one pill in an alarmed pill taker so I can carry one with me every day, I hope this is OK? I'm happy to hear some have had issues disappear as they get farther into treatment, as I'm getting tired of lying in bed all the time.
My twin ( who's a physio) came to stay last weekend with me. She said I was getting all the muscle twitches and pain from muscle atrophy as I was lying down too much and have lost too much muscle, so they they are literally dying! She got me up and going some exercise and it has helped. For those with this issue, try going for short walks and climbing stairs when possible.
I sure wish I could get a viral load test at 4 weeks as I'd love to know if this is working, but my doctor won't issue one until 4 weeks post treatment. So I'm in the dark...
Laurie

Many who have had digestive issues have found that soups instead of just tonnes of water to be a best option If you are having digestive issues during treatment. Losing excess weight is not going to help you clear the virus. Good digestive and renal function will and if you are not adequately getting exercise and nutrition it can become a self defeating cycle. You can't get exercise because you have no energy and conversely it is harder to digest food if you do not have the energy to do it!

If necessary use ensure and decent protein drinks, smoothies or whatever. Get some good nourishment going on and do it right away if you are having digestive issues and especially if you are losing muscles from physical weakness!

Take care, eat a normal diet and exercise however and whenever you can. I know you will clear this virus but starving will not help get rid of liver disease. A sensible diet and exercise not dieting is the answer!
Title: Re: Harvoni Side effects
Post by: gnatcatcher on August 26, 2015, 07:57:36 pm
Laurie, if I understand correctly, you are not choosing to lose weight -- it is the nausea that is resulting in the weight loss, yes? If the rule of thumb of 1 ounce of fluid intake for every 2 pounds of body weight is valid, at your current weight, that would be 52.5 ounces/day, although I don't know how that amount would be modified if you are losing fluids through vomiting. Someone on one of these forum threads indicated that too much fluid intake can cause headaches, so I hope you can find the "sweet spot": your ideal amount of fluid intake.

Putting just the current day's pill in a separate container sounds fine to me. Going a few hours without the white silica gel desiccant that comes in the bottle shouldn't be a problem unless the separate container spends those hours in a sauna.

I'm glad your physio twin's expert advice about exercise has helped. Your doctor's policy, on the other hand, is puzzling, unless s/he has had patients who weren't conscientious about taking their Harvoni if they were undetected at 4 weeks. Or perhaps your Canadian province has a policy of not testing at 4 weeks. I'm glad the ginger gravol helps somewhat, but if your doctor is aware of your major nausea/significant weight loss, I'm surprised s/he hasn't offered a prescription for an antiemetic.
Gnatty
Title: Re: Harvoni Side effects
Post by: slats1056 on August 27, 2015, 09:09:17 am
Laurie,  try backing the h2o back & adding other fluids like sports drinks & juices. I have found My sweet spot at 1 oz. liquid to 1 lb. body weight. But , at first I was getting cramps. Backed the h2o down, added Gatorade & juices & they stopped almost entirely as well as keeping the headaches in check! I posted a question about electrolyte level but no response. Trying to do some research in My spare time on the topic. Juices & broth will also give You some nutrients & are easier on You if the need to toss Your cookies comes up! Watch the sugars & acids though!
  Try some walking when You have any energy , it's better than nothing. Let Your Doc know about everything for sure!
Title: Re: Harvoni Side effects
Post by: Lou66 on August 27, 2015, 12:48:23 pm
I'm on 4 days of Harvoni, the first day had stomach swollen.
I had expirences of interferon +riba, and these new medicine seem better for side effects, I hope for the low side effects and I'm happy for start the treatment.
I would take vitamin C but Idon't know if is possible, anyone take vit.C ? (http://)
Title: Re: Harvoni Side effects
Post by: beto on August 27, 2015, 02:22:34 pm
Hey Lou66,

From personal experience and all that I have heard, the first week tends to be the strongest sides.  My feeling is that it means the meds are working.  I take Vitamin C, and have through 7 weeks of treatment and I am undetected with normal enzymes at 6 weeks blood draw.  I can't recommend to anyone what to do with regard to supplements.  I personally have taken a few supplements, however, I talked with pharmacist, checked Harvoni contraindications and researched elsewhere.  I do not want to rock the boat as this is a big chance to beat this thing...so was careful.  Biggest supplement "no no" is St Johns Wart according to Gilead.  Lot's of material I suggest you check on.  Good luck.

Now my big side question of the day;  Has anyone had Herpes 2 flareups since starting Harvoni?????   
Title: Re: Harvoni Side effects
Post by: SunIsOut on August 27, 2015, 06:04:11 pm
My 8 week post treatment came back detected with a value of 270 where I was undetected at weeks 8, 12, 16. They want to retest next week. It is cloudy today in my personal world and I am being life tested where I am still job hunting too!

Well, well, well and I do mean well like as in undetected at 12 weeks post treatment.  It seems the test at 8 weeks post treatment was faulty and I am fit as a thistle,  or is it whistle, or fiddle.  Okay so Harvoni may not cure mind melts, but it sure did wonders on Hepsi or is it pepsi. What were we talking about.....oh yeah,  I am well well well, uh huh, uh huh, that's the way I like it, uh huh!!  ;D
Title: Re: Harvoni Side effects
Post by: Katie on August 27, 2015, 06:47:10 pm
I KNEW IT!

CONGRATULATIONS SUN IS OUT!!!!!!!!!!!!


THANK YOU FOR MAKING MY DAY SHINE AS I CAN TELL YOURS CERTAINLY IS. I am so delighted and just knew in my gut that you were going to be OK.   :) :D ;D   

I just had my 24 post week draw and will get the results this coming week.  I am not worried at all.  Everyday I feel a bit better.  I even replaced my blade on my table saw yesterday as I think I can finally tackle that book case I've been planning on building.  It's been a slow, unproductive summer for me, but I am going in the right direction.  Hope you are feeling better too and all the post issues you were experiencing have disappeared!
 
Take care my friend!  Check in once in awhile just to say "Hi"!  ;)

{{{{{BIG HUGS}}}}}

Katie  :-*
Title: Re: Harvoni Side effects
Post by: Patience on August 27, 2015, 07:21:56 pm
Thank you, thank you, thank you! Every time someone posts good news it makes this member of Nail-Biters-Anonymous breathe a little easier. I'm 2 days away from entering the dreaded waiting period and I am so encouraged by your victories. Very happy- making!
Title: Re: Harvoni Side effects
Post by: Lynn K on August 27, 2015, 07:29:26 pm
Hey Sun is Out

Good Day Sunshine!

Awesome news congrats!
Title: Re: Harvoni Side effects
Post by: Katie on August 27, 2015, 07:32:42 pm
Nice seeing your face Lynn!  Thanks for posting your picture!
Title: Re: Harvoni Side effects
Post by: Lynn K on August 27, 2015, 07:35:01 pm
Coming out of the hep c closet lol
Title: Re: Harvoni Side effects
Post by: Katie on August 27, 2015, 07:41:40 pm
Hahahaha...Good for you.  Guess I'm not quite there yet, but explaining more as I go.  When I had my blood drawn yesterday, the lab tech gave me a hug.  She is so excited to hear the good news results!

On the downside, my internist for 27 years has closed his office.  I loved him and don't know where to go.  He's been gone, due to medical issues, since end of March so I was anticipating this, but remained hopeful and now just hope he's OK.  I did send him a card so he'd know I cleared the virus.  He was the most caring and dedicated doctor I have ever met and will leave a huge void in our community.  Guess it's time to see who else is out there.  It will all work out and am so grateful I had him help me through my Hep C crisis.

Take care Lynn and thanks for the support you give everyone!  you are a special lady.

Katie
Title: Re: Harvoni Side effects
Post by: Dudleyandme on August 27, 2015, 11:00:44 pm
Just to clarify... I eat a breakfast at 7am, then another meal at 10am just before I take the Harvoni and then my hubby makes me an all juice smoothie from fresh veggies and fruits which is 15oz..then I have a full meal at dinner that is low in fat and acids.this is in addition to my water intake of 60 oz. I'm doing my very best to stay healthy and maintain my weight. Thank you Gnatty and Tommy for understanding and advice.
Laurie
Title: Re: Harvoni Side effects
Post by: Mugwump on August 28, 2015, 01:26:09 am
Just to clarify... I eat a breakfast at 7am, then another meal at 10am just before I take the Harvoni and then my hubby makes me an all juice smoothie from fresh veggies and fruits which is 15oz..then I have a full meal at dinner that is low in fat and acids.this is in addition to my water intake of 60 oz. I'm doing my very best to stay healthy and maintain my weight. Thank you Gnatty and Tommy for understanding and advice.
Laurie
Glad to hear that you are staying well nourished. Perhaps the boost that Harvoni gives some people does make their metabolism ramp up too much. I know I felt like a low land Gorilla and had incredible muscle strength starting around 6 weeks of treatment. If anything my appetite increased during treatment as my liver functions normalized.

Katie and others also went on building binges, painting you name it, to many it seemed as if Harvoni was actually mixed with speed!  It was incredible, my stamina, hearing, sense of balance and general sense of well being improved drastically almost overnight. Before treatment I was starting to use a cane to get around and was very weak in the leg muscles as my liver functions got worse and worse due to advancing cirrhosis. I could only walk a few kilometers at a time and that was it, off my feet for at least 4 hours! Now I can easily walk 15-20 km again without getting to a wall where I need to stop and recover.

Stay happy, stay strong and slay the dragon. Everyone here is pulling for you!

Eric

Title: Re: Harvoni Side effects
Post by: slats1056 on August 28, 2015, 09:14:33 am
 Mugwump & Lynn  Good pictures!! Glad all is well for you guys. If anyone is more technologically challenged it would be Me!!! LOL! I'm going to check out Gnattys' post & see how bad I can screw up My ugly mug!!!

 Laurie  Keep on plugging. Did You try mixing up Your fluids? It just dawned on Me that here I am going into week six & I haven't had one of the mind numbing headaches in about a week! Hope I'm not jinxing Myself! It is definitely getting better & the forums help a lot knowing there are so many other brothers & sisters in arms out there that understand our plight. Kind of like unconditional love & understanding on an unprecedented level. Keep Your chin up & go get 'em girl!

  It is so excites My spirit & uplifts My being that I am about to pee all over Myself. No wait, that might be the fluids a little bit. Such good News from all of Your posts. The Sun is so bright I need to get My shades out!!!!!
Title: Re: Harvoni Side effects
Post by: beto on August 28, 2015, 11:31:07 am
Hey Slats

Nice blood work...feels good doesn't it, to see the ALT/AST go down etc.  Question: Were you fasting for the test?  Glucose has totally different ranges when not fasting.  If not fasting it's like under 140 is OK.  keep that sense of humor going yo...
Title: Re: Harvoni Side effects
Post by: slats1056 on August 28, 2015, 12:37:55 pm
Beto, I was fasting but not by choice!! That was one of My bad days of sides & barely made it through work to get My blood drawn.  The results came in a week later on another bad day that was truly a three ring circus. Receptionist that was so much help with getting My insurance inline & on board, (got applied, reviewed, approved , & got meds. in 7 days) was no longer there. My appointment was not logged , lab didn't send results & then only faxed part of the results , ETC. ETC ETC.
I was fit to be tied. Maybe even some electroshock therapy.......! Anyway , with My list of questions to ask the Doc , I promptly sat there dumbfounded & didn't ask a single question from the list!!!!!!!! Fast forward a couple of days as I was updating My signature & it hit me !!! This shit is working , that is why I have been feeling so bad!!!!! So, everybody go dance in the rain. Just don't pee in the mud puddles, that's where I like to play!!!!LMFOA

 To all the NEWBIES & NOT SO NEWBIES. This is a truly awesome time to be alive with the meds. available to us all. Hep C be damned , I am gonna be cured! When I grow up , I wanna be just like all of youse guys the have made it to SVR and beyond! Later gators!!
Title: Re: Harvoni Side effects
Post by: redcat36 on September 02, 2015, 10:12:10 pm
Hi everyone,
I started treatment with Harvoni on August 27.  During the past week I've had very minimal side effects - slight nausea, diarrhea, mild fatigue, and insomnia - nothing to write home about.  I actually feel a little euphoria after about an hour which lasts most of the day, even mixed with mild erotic feelings (yay!).  So far, so good, looking forward to the first blood tests after 4 weeks.
My doctor informed me during pre-treatment counseling that they have rejected the two fibroscans that showed stage 4 and do not now believe I have cirrhosis.  They think the equipment showed a false reading due to excessive belly fat - good news and bad news.  I'm on a really healthy diet now and am slowly losing some of the fat.  I eat small amounts several times during the day which completely relieves the nausea and diarrhea.
Many thanks to all for your posts, more later.
Regards,
Larry
Title: Re: Harvoni Side effects
Post by: concerned father on September 02, 2015, 10:32:47 pm
My daughter is on her second day of treatment and she is already feeling fatigued. Has anyone felt fatigued this early in the treatment?
Title: Re: Harvoni Side effects
Post by: slats1056 on September 02, 2015, 11:27:09 pm
 Concerned Father, Yes just about everyday before, starting, & during Meds.  Nutrition, sleep & rest to give the body a break & heal, and lastly HYDRATION. Good old H2O, Fruit juices & ices. If I remember correctly Your Daughter was in her earl twenties???? Great time to get in the habit of treating Your body right & keeping it healthy because there is a long life out there ahead of her! Take it from an old fart that has survived & outlived most all of My cohorts from back in the day despite My lack of respect for Myself & My body. Believe it or not I still look pretty decent for pushing sixty even though Some of My life choice were less than desirable and quite detrimental now that I look back.Keep her positive & make her laugh.

  Redcat , After the sides I had early on, If I were You I would be writing any and everybody that would listen. Good for You & great to hear Your trip is going good. Welcome to the inane world of Hep C treatment where nothing seems to make sense & there is no rhyme or reason to the madness. Keep up the good work.

 ALL THAT GLITTERS IS NOT GOLD, THEM LITTLE HARVONI DIAMONDS SEEM TO SPARKLE MIGHTY BRIGHT , TO BAD I HAVE TO EAT THEM ALL!
 
Title: Re: Harvoni Side effects
Post by: Mugwump on September 03, 2015, 12:31:25 am
My daughter is on her second day of treatment and she is already feeling fatigued. Has anyone felt fatigued this early in the treatment?
Because your daughter is young and most likely has good liver function anything that effects the way it functions will necessarily be more obvious. Yes there was a little fatigue and slight headaches associated with Harvoni at first. But these should not be huge effects. The very few who do have greater reaction to this medication by and large have other health issues, for instance arthritis and other long term health issues.

But your daughter should not have what we have come to refer to as serious "brain fog". Most who have advanced liver disease associated with HCV do experience so called "brain fog". There are more substances in the blood that impair brain function caused by impaired liver functions. There is much documentation about cirrhosis and how it effects the chemistry of the brain so those who do not suffer from cirrhosis should not experience metal changes from Harvoni. Perhaps some small effects but no where near to the degree that those who have cirrhosis can.

For instance before I started Harvoni the mental effects of changes in my blood chemistry led me to voluntarily take myself off the road. I was becoming too easily distracted and a bit of a "space cadet". The difference is that I knew it and made the decision not to drive. So this is the "brain fog" effect and yes if there is more advanced liver damage some have reported that there is an increase in the lack of the ability to concentrate early on in the treatment.

The 'brain fog" effect cleared after about week 6 and so did the slight headaches. I never resorted to taking so much as an aspirin and the level of the discomfort caused by Harvoni was mostly an increase in flatulence. Something which is really weird but was actually rather disturbing if not down right annoying at times!

I know many seem to have had a more difficult time on this med, but if your daughter is in otherwise good health then the side effects will be short and minimal.

All the best in seeing her through to SVR,

Eric
Title: Re: Harvoni Side effects
Post by: concerned father on September 03, 2015, 07:33:42 am
Thanks Eric and Tommy, I really appreciate your input.
Title: Re: Harvoni Side effects
Post by: chance on September 03, 2015, 12:42:51 pm
This is my first post. I have been on Harvoni for a 28 days. Today will be my 29th pill! I am extremely excited to be cured soon! It has been years that I have waited for this pill to be approved. I have crohn's disease and I could not try all the other treatments for Hep C due to the side effects. I have been through a lot of emotional pain in the last month. Right when I started Harvoni something happened, I had no support system and have been alone. In the first week I had headaches but they went away after awhile. I had brain fog for the first few weeks and that has gotten better, I think. I have that anyway! :) I have felt wired for the last 3 weeks at times and always have fatigue. I have started to have more energy and feel better all around for about a week and that really had me hopeful! I have felt sick for years with flu like symptoms the side effects so far were not anything new to me. In fact I have been pleasantly surprised due to how bad I have felt for so long this has not been hard at all. The one thing is all this time I have been on Harvoni I have not eaten. I have had no appetite and when I have been hungry it repulses me to think about food. The only thing that I have had to depend on is orgain drinks and smoothies. I am not sure if this is due to the medicine, being so upset or both? The day before yesterday I finally broke down and had chicken and rice soup. Since then I have diarrhea and can not hold water in me. I have not been sick from crohns disease for years. Me not eating for so long has me afraid that it might have started my illness with crohns to flare up and my experience is it will not just go away. In fact about 10 years ago is when I was diagnosed with crohns and after the ivs the pills, the iv treatments I went to iv drugs and contacted Hep C. 90 pounds in diapers with hopeless years of treatment I gave up. Fortunately God brought me back to alive and well. Waiting for Harvoni! I am wondering if anyone else has not been eating and has diarrhea? Thank you!
Title: Re: Harvoni Side effects
Post by: KimInTheForest on September 03, 2015, 01:07:22 pm
Hi Chance, and welcome to the forums and to the Harvoni journey! :) I can relate to your experience. I had serious appetite suppression throughout my 12 weeks of Harvoni. And I also had diarrhea for about 1 week halfway through. For the diarrhea, the best thing seems to be the BRAT diet: Bananas, Rice, Applesauce, Toast. The rice and toast should be white, not whole grain. And the applesauce should be from peeled apples so there is no fibre or roughage to irritate or stimulate the digestive system. The BRAT diet worked for me. I started it on Day 7 of my diarrhea, and the problem disappeared the same day.

As for the problem of not eating… Very important that you find some way to get calories and nutrients in you. I did not do a good job of that, and so I got sick post-treatment and am still pulling myself out of that. am going in to doctor for B12 and iron next week because I am now deficient in both of those.

Yes, go with healthy organic smoothies and other organic drinks as much as you can. Maybe find a high-quality protein shake. I researched that a lot, did not like any of the products I found because they all had a lot of crap in them. Then I found one that looked really good (Ultra Nourish Liver Support Vegetarian Superfood Protein Shake). I would have bought it, except by the time I discovered it my appetite came back (4 weeks post-treatment!). So I didn't need it anymore. I am now FINALLY eating normally and also taking some vitamin supplements (Vit C, B-complex, B12, iron, D3).

Very important to figure out a way to get calories and nutrients in you when appetite suppression is a side effect. I learned this the hard way.

All the best to you! :)
kim

Title: Re: Harvoni Side effects
Post by: Katie on September 03, 2015, 03:38:30 pm
Hi Chance, Remember for your bowels to work correctly it needs to have roughage to process.  If you haven't had much fiber in your system and now you are starting it will have an effect.  It is kind of like when you have a colonoscopy.  It takes awhile to get back up and running and with your history it probably takes longer.  Go slowly and introduce solid foods little by little and hopefully it will improve.  You need to eat and soup is good!  Rice is good too and you can double the amount of water and cook it into a mush so it is broken down and easy for your system.  You can add fruit or soft veggies and even a little meat or scrambled eggs for protein. I hope your smoothies have vegetables added as if they are just fruit that could contribute to diarrhea.  Remember fruit are our cleansers.

I wish you the best and hope it all works out.  I hope you are in contact with your doctor and hope your appetite comes back.

Katie
Title: Re: Harvoni Side effects
Post by: Carmine on September 04, 2015, 09:24:29 am
Hello everyone I'm on my 15th week of Harvoni, I get tired a lot and a few times a week I wind up with diarrhea  two hours after I take the Harvoni also I have swollen lympnodes in my neck on right side, there are 4 bumps. They don't hurt but are noticeable I don't see my doctor for one more week, has anyone gotten swollen lympnodes I also have one large one under my right arm besides red itchy bumps on my arms and legs, I'm hoping it just a reaction from the Harvoni
Title: Re: Harvoni Side effects
Post by: gnatcatcher on September 04, 2015, 10:01:17 am
Hi, Carmine. Other people on these forums have mentioned swollen lymph nodes during treatment, and someone mentioned that swollen lymph nodes can be caused by the Hep C itself.
   To speak to a medical professional before you see your doctor, you can call a pharmacist or nurse at the specialty pharmacy that supplies your Harvoni. Or you could contact Harvoni Support Path (http://www.harvoni.com/support-and-savings/tips-and-tools) which offers 24/7 live nurse support.

Gnatty
Title: Re: Harvoni Side effects
Post by: Carmine on September 04, 2015, 10:42:27 am
Ty Gnatcacahet
My first blood work was after 28 days and my Hip C came back undetected, doc wants 24 weeks I'm happy to be rid of the Hip C but I still have lymphoma I have to deal with when I'm done with the Harvoni, I beat it twice already but it came back I will ask my pharmacy about the itchy bumps to see what I can use
Title: Re: Harvoni Side effects
Post by: KimInTheForest on September 04, 2015, 12:57:12 pm
Ty Gnatcacahet
My first blood work was after 28 days and my Hip C came back undetected, doc wants 24 weeks I'm happy to be rid of the Hip C but I still have lymphoma I have to deal with when I'm done with the Harvoni, I beat it twice already but it came back I will ask my pharmacy about the itchy bumps to see what I can use

Hi Carmine. Congrats on being undetected after 24 days! There is one type of lymphoma (a B-cell non-Hodgkin's lymphoma) that is a result of chronic Hepatitis C. And the good news is that type disappears once the Hep C virus is eliminated from your body. There are many types of lymphoma. That may not be the one you have. It could be, though. So I would say see what your body does after you are cured of Hepatitis C. You may find that the lymphoma is gone as well.

And yes, I too had very swollen lymph nodes at one point during my Harvoni treatment, and then again post-treatment when I got sick due to becoming depleted during treatment. I also have some chronically enlarged lymph nodes from years of Hep C.

Best of luck to you on your journey to being cured! :)

kim
Title: Re: Harvoni Side effects
Post by: rp616 on September 07, 2015, 11:22:23 pm
Just finish half of my first bottle. Side effect is minimal, slight headache, insomnia on a few days. Feeling more energetic already.
Title: Re: Harvoni Side effects
Post by: concerned father on September 08, 2015, 10:29:53 am
My wife just spoke to my daughter's nurse and she gave her a number 3.14 e +5.  Unfortunately, she didn't ask more questions.  Does anyone know what this number is?
Title: Re: Harvoni Side effects
Post by: beto on September 08, 2015, 11:04:39 am
concerned father

Hello.  Do you have anymore information? Like what the test was?  Why she was tested? Obviously the best thing to do is to call the doctors office and ask.

As to her side effects...Though mine have been mild for the most part, that first week was a doozy.  Was very up and down with brutal fatigue.  Good luck, someone will recognize that number.
Title: Re: Harvoni Side effects
Post by: Lou66 on September 08, 2015, 11:37:41 am
I'm on 3 weeks of teatment, and now I have pain in the front part of the liver...
I want think is the Harvoni war against the million of virus... I hope...
Title: Re: Harvoni Side effects
Post by: concerned father on September 08, 2015, 11:41:50 am
concerned father

Hello.  Do you have anymore information? Like what the test was?  Why she was tested? Obviously the best thing to do is to call the doctors office and ask.

As to her side effects...Though mine have been mild for the most part, that first week was a doozy.  Was very up and down with brutal fatigue.  Good luck, someone will recognize that number.

I assume that the nurse was talking about her viral load but it's the e+5 that I don't understand.
Title: Re: Harvoni Side effects
Post by: gnatcatcher on September 08, 2015, 11:49:26 am
314,000. Here's an online calculator that converts Scientific Notation To Decimal Notation: http://www.easysurf.cc/scintd.htm

Gnatty
Title: Re: Harvoni Side effects
Post by: KimInTheForest on September 08, 2015, 12:08:55 pm
314,000. Here's an online calculator that converts Scientific Notation To Decimal Notation: http://www.easysurf.cc/scintd.htm

Gnatty

Thanks Gnatty! It's all coming back to me… visions of Chem 101 from 40+ years ago… ;)

So "e" is "exponent". And it's an exponent tacked onto "10".

So 3.14 e+5 = (3.14) x (10 raised to the 5th power)
= 314,000

kim

Title: Re: Harvoni Side effects
Post by: concerned father on September 08, 2015, 12:13:46 pm
Thanks Gnatty! It's all coming back to me… visions of Chem 101 from 40+ years ago… ;)

So "e" is "exponent". And it's an exponent tacked onto "10".

So 3.14 e+5 = (3.14) x (10 raised to the 5th power)
= 314,000

kim

Does that mean she has a viral load of 314,000?
Title: Re: Harvoni Side effects
Post by: KimInTheForest on September 08, 2015, 12:16:12 pm
Does that mean she has a viral load of 314,000?

Well, 314,000 certainly could be a viral load number. When were those lab results collected in relation to her treatment? Was that perhaps her starting viral load on Day 1 of treatment?

kim
Title: Re: Harvoni Side effects
Post by: concerned father on September 08, 2015, 12:20:48 pm
Well, 314,000 certainly could be a viral load number. When were those lab results collected in relation to her treatment? Was that perhaps her starting viral load on Day 1 of treatment?

kim

I assume it is because she told her that a viral load over 8,000,000 was an automatic 12 week treatment.
Title: Re: Harvoni Side effects
Post by: KimInTheForest on September 08, 2015, 12:22:42 pm
I assume it is because she told her that a viral load over 8,000,000 was an automatic 12 week treatment.

So is your daughter on an 8 week treatment of Harvoni?

kim
Title: Re: Harvoni Side effects
Post by: concerned father on September 08, 2015, 12:24:51 pm
So is your daughter on an 8 week treatment of Harvoni?

kim

The doctor approved her for 12 weeks but she would like to stop at 8 weeks.  I don't agree with her decision.
Title: Re: Harvoni Side effects
Post by: concerned father on September 08, 2015, 12:28:45 pm
Is it safe to assume that a viral load of 314,000 is low?
Title: Re: Harvoni Side effects
Post by: KimInTheForest on September 08, 2015, 01:00:32 pm
Is it safe to assume that a viral load of 314,000 is low?

Yes, a starting viral load of 318,000 is low. But if her doctor approved her for 12 weeks, she should count herself very lucky. She would be best off doing the whole 12 weeks. The majority of Harvoni relapses being reported here on these forums are from people who only did 8 weeks. Doesn't mean 8 weeks won't cure her. But 12 weeks would pretty much be a slam dunk.

If she is having a problem with side effects, there are often things that can be done to improve or reduce sides. And many side fx disappear after a week or 2, according to what most of us here have experienced on Harvoni. If fatigue is bad for her after taking the Harvoni, she can take it in the evening so she sleeps through the fatigue. She can also have her iron and B12 levels checked to see if she is low there, and if that is contributing to her fatigue. It certainly was in my case. I wish I had not waited until 5 weeks post-tx to do something about that.

best,
kim :)
Title: Re: Harvoni Side effects
Post by: concerned father on September 08, 2015, 01:08:28 pm
Thank you so so much Kim for your comments.  Words cannot express how much I appreciate them.
Title: Re: Harvoni Side effects
Post by: gnatcatcher on September 08, 2015, 01:10:03 pm
The doctor approved her for 12 weeks but she would like to stop at 8 weeks.  I don't agree with her decision.
Has your daughter seen the statistics in this post in another thread?
http://forums.hepmag.com/index.php?topic=2665.msg27893#msg27893
The rearranged figures from Gilead's clinical trials are found in their original form in the Prescribing Information (much-folded thin paper) that should have come with the bottle of pills. If your daughter has persistent, strong side effects, that could be a reason to stop at eight weeks, but otherwise her odds of a cure go up with twelve weeks. Why would she want to risk wasting the eight weeks she put in?

Yes, 314,000 is low if it's the VL prior to her beginning treatment. In that case, if the VL after 4 weeks of treatment is 3,140 or less, it's a sign that the treatment is working. (Whatever the VL prior to treatment, if there's at least a 2 log drop, that's excellent progress.)

Gnatty
Title: Re: Harvoni Side effects
Post by: beto on September 08, 2015, 01:18:54 pm
Hello again,

I mentioned this before.  I generally have a high iron profile with high ferritin numbers.  Those dropped considerably in very short order and I do not know why harvoni does this.  However, for some, a drop in iron could go pretty low.  So the suggestions by Kim regarding iron and b-12 etc. might be brought up to your doctor.  Especially if a low iron diet is present.

good luck
Title: Re: Harvoni Side effects
Post by: concerned father on September 08, 2015, 01:27:11 pm
Has your daughter seen the statistics in this post in another thread?
http://forums.hepmag.com/index.php?topic=2665.msg27893#msg27893
The rearranged figures from Gilead's clinical trials are found in their original form in the Prescribing Information (much-folded thin paper) that should have come with the bottle of pills. If your daughter has persistent, strong side effects, that could be a reason to stop at eight weeks, but otherwise her odds of a cure go up with twelve weeks. Why would she want to risk wasting the eight weeks she put in?

Yes, 314,000 is low if it's the VL prior to her beginning treatment. In that case, if the VL after 4 weeks of treatment is 3,140 or less, it's a sign that the treatment is working. (Whatever the VL prior to treatment, if there's at least a 2 log drop, that's excellent progress.)

Gnatty

I have shared that information with her.  So far she only has fatigue which she had before treatment and the occasional headache.  I will try to convince her to complete the 12 week treatment. 
Title: Re: Harvoni Side effects
Post by: slats1056 on September 08, 2015, 02:18:47 pm
 Concerned Father , I agree 100% with Kim & Gnatty. Why take the chance of falling on the wrong side of the statistical fence with the possibility of a relapse by stopping at 8 weeks when She is virtually guaranteed to clear the virus at 12 weeks. Allready having the twelve week approval is most of the battle right there!!!! Trust Me when I say that she does not want the Dragon on Her back for any longer than it takes to kick his ass to Kingdom come. ( excuse My French! ). I am sure that if You can get Her to read the forums to see how much trouble and problems a lot of people are having ( not to mention health issues ) that she will be happy to complete the extra four weeks without any problem.
Title: Re: Harvoni Side effects
Post by: Vicky on September 08, 2015, 08:34:41 pm
In mid July this year I completed 24 weeks of Harvoni, 12 extra since I had had liver cancer, cirrhosis and a transplant in 2012.  So far I am virus free, and hope to continue being hep c free forever.  What you newcomers must realize is that Harvoni is a gift we are lucky enough to get.  I've been diagnosed for 25 yrs ith an unknown reason for the disease.  I unsuccessfully went thru 3 horrible yrs of interferon and ribavarin treatments.  It seriously about killed me.  I got so sick that I spent about 20 years in bed almost every day.  No way to live, work, raise 2 kids and keep a husband happy.  So thank god, dr. Harvoni, and your guardian angel every day that you are healthy, and by all means, if you have any questions or concerns, call an expert!!
Title: Re: Harvoni Side effects
Post by: beto on September 08, 2015, 09:03:41 pm
here here Vicky.  Your courage is greatly respected. 
Title: Re: Harvoni Side effects
Post by: Vicky on September 08, 2015, 09:10:41 pm
Thanks!  I am my best advocate, but I also have an excellent team of liver experts who have worked very hard for me.  I am spending my days being a liver health advocate for others in any way I can.
Title: Re: Harvoni Side effects
Post by: slats1056 on September 08, 2015, 10:56:40 pm
 Hey Vicky, It is always good to hear from a Vet of the Hep C wars. People like You never cease to amaze Me. Tough as nails & like the Eveready bunny You just keep going & going & going!!! Many thanks to You and others here who paved the way for so many break throughs. I sincerely hope You are in good health & spirits. You certainly sound like Your head is in the right place. Many should strive to be half as strong a person as You. My hat is of to You & the many like You that have sacrificed so much! I am forever indebted to all of You!
Title: Re: Harvoni Side effects
Post by: Lou66 on September 09, 2015, 02:03:41 am
Ciao Vicky, great story of legendary warrior!!
I fell better, when I read you!
Grettings from Italia, stay strong !!!,!!,
Title: Re: Harvoni Side effects
Post by: THUTHADOO on September 14, 2015, 10:19:28 am
I am starting month 6 had no side effects until near the end of month 5 at which time I developed a swollen gland in my neck that wont go away and intermittent night sweats. FYI I am undetectable at month 5.

I am wondering if anyone else has been experiencing intermittent night sweats and a persistent swollen gland(s).

After I complete the 6th month If these symptoms don't subside I plan on seeing a specialist re the gland and night sweats.

harvoni being so new I am not sure if anyone really knows what the long term effects will be
Title: Re: Harvoni Side effects
Post by: rp616 on September 14, 2015, 10:58:55 am
Today I am starting the 4th week. Side effect was minimal at first. This last week, I experienced leg cramps and edema in the calves. Hope that it is temporary.
Title: Re: Harvoni Side effects
Post by: Vicky on September 14, 2015, 11:10:55 am
I have a strong suggestion!  While taking Harvoni, or even after, if you have side effects that you're not sure of, get expert advice!  I would hope that you have a team working with you.  All I had to do was to call the crnp in my hepatologist's off., leave a message, and get a call back!  Takes the worrying out of the picture! 
Title: Re: Harvoni Side effects
Post by: THUTHADOO on September 14, 2015, 11:20:09 am
I have spoken with my Hep C doc and my GP both of whom didn't appear to be concerned....

GP points to Hep C doc and says it might be allergies or harvoni related

Had a beck CT scan which indicated shotty glands that did not appear to be pathologically inflamed but reactive (whatever that means)
and the Hep C doc just looks puzzled

I'll go to an ENT at the end of the 6th month in about 23 days.. and see if they can figure it out..

Title: Re: Harvoni Side effects
Post by: gnatcatcher on September 14, 2015, 12:08:39 pm
THUTHADOO, I searched the Hep Forums, and both a swollen gland in the neck and night sweats have been mentioned, but neither seems at all common. It's anybody's guess whether they are rare side effects caused by the Harvoni or just things that happened arbitrarily. I've certainly experienced both, though not while I'm on Harvoni.

Since both of your docs aren't worried, you seem to be dealing with nuisances rather than dangers. You're already 5/6 of the way through treatment, and the "undetectable" shows that the treatment is working, so your goal -- a cure -- is well within reach. Onward!

Gnatty
Title: Re: Harvoni Side effects
Post by: beto on September 14, 2015, 01:17:05 pm
Thuthadoo

A thought here.  Consider that we all have been walking around with high viral counts and then suddenly we rapidly start killing off the hep C and who knows perhaps other viruses.  I personally had a bout with what appeared to be herpes flare up.  My skin in the area became very painful and the lymph nodes inflamed for 3 weeks.  Then it disappeared.  Our immune systems are also freed for the long burden of fighting the disease.  Ask your doc of course, but I personally considered it a sign that the meds were working.  The got my blood work back and indeed the meds were working.  Die off is toxic.  Hang in there.  good luck
Title: Re: Harvoni Side effects
Post by: THUTHADOO on September 14, 2015, 03:12:29 pm
Thanks, I get that my immune system has been taxed for 40 years, and it may be coincidental that the month I cleared the virus I got the swollen gland and night sweats, and was just curious if others experienced similar issues, or if my issues are coincidental to clearing the Hep C virus and now I have an additional health challenge that may have been masked by the Hep c all these years.

I do appreciate everyone taking the time to provide their insights, and welcome any and all feedback.

I am just tired of feeling unwell. I thought once I cleared the Hep C life would be good again, but I don't seem to have been that fortunate

thanks!

Title: Re: Harvoni Side effects
Post by: gnatcatcher on September 14, 2015, 03:20:36 pm
THUTHADOO, you have a lot of company. Many people on the Hep Forums found that after treatment was finished, they didn't suddenly feel all better. Kim and Eric (Mugwump) come immediately to mind, but there are quite a few others who have learned first-hand that the process can take considerably longer. The emotional healing takes a while, too; there's a very good thread in progress about that: http://forums.hepmag.com/index.php?topic=3212.0
Title: Re: Harvoni Side effects
Post by: THUTHADOO on September 14, 2015, 03:30:44 pm
Thanks for the link GNAT...!
Title: Re: Harvoni Side effects
Post by: MrSimple on September 20, 2015, 11:56:17 am
I have a quick question. When I checked with the doctor after one month on Harvoni, the virus was undetected. The doctor said that I should take another blood test after the treatment was done (3 Month treatment). I am now entering my third month on Harvoni but the symptoms are getting worse now. During my first and second month I didnt have many side effects if any, but now they are starting to get much worse. my question is, do you think that its possible that the virus may have disappeared from my body perhaps after two months and now im just taking the harvoni on a body that has no HCV which is causing these worsening symptoms. Its kinda like having a person with no HCV take harvoni: Would it be the reason why im feeling the symptoms because im taking harvoni with potentially no HCV in me and is this bad for my body? Thank you in advance
Title: Re: Harvoni Side effects
Post by: Else on September 20, 2015, 01:02:15 pm
I have a quick question. When I checked with the doctor after one month on Harvoni, the virus was undetected. The doctor said that I should take another blood test after the treatment was done (3 Month treatment). I am now entering my third month on Harvoni but the symptoms are getting worse now. During my first and second month I didnt have many side effects if any, but now they are starting to get much worse. my question is, do you think that its possible that the virus may have disappeared from my body perhaps after two months and now im just taking the harvoni on a body that has no HCV which is causing these worsening symptoms. Its kinda like having a person with no HCV take harvoni: Would it be the reason why im feeling the symptoms because im taking harvoni with potentially no HCV in me and is this bad for my body? Thank you in advance

I'm confused, Mr. Simple.  ???  Or you taking Harvoni or getting info for your mom?  And did side-effects become a problem towards the end of the first month or the beginning of the third month?  Cool if two people are using one account, but it makes it confusing.
Title: Re: Harvoni Side effects
Post by: MrSimple on September 20, 2015, 02:06:04 pm
im so sorry. im using my sons account. my son told me that if i ever have questions to ask on this website. sorry for the confusion.

The side effects started at the beginning of the third month.
Title: Re: Harvoni Side effects
Post by: Else on September 20, 2015, 02:11:30 pm
No worries!!!  I haven't been on Harvoni long enough to give you any input but I'm sure someone will chime in soon.  In the meantime, this particular thread is very, very long and worth reading through. 
Title: Re: Harvoni Side effects
Post by: KimInTheForest on September 20, 2015, 02:19:12 pm
I have a quick question. When I checked with the doctor after one month on Harvoni, the virus was undetected. The doctor said that I should take another blood test after the treatment was done (3 Month treatment). I am now entering my third month on Harvoni but the symptoms are getting worse now. During my first and second month I didnt have many side effects if any, but now they are starting to get much worse. my question is, do you think that its possible that the virus may have disappeared from my body perhaps after two months and now im just taking the harvoni on a body that has no HCV which is causing these worsening symptoms. Its kinda like having a person with no HCV take harvoni: Would it be the reason why im feeling the symptoms because im taking harvoni with potentially no HCV in me and is this bad for my body? Thank you in advance

Hi Mr. Simple. Welcome to the forums and to the Harvoni journey! :)

The virus is probably almost entirely gone after 2 months. But that doesn't mean every last replicating piece of it is gone. That is the reason for the full 12 weeks of treatment even though most people become undetected by end of Week 4 on Harvoni. So it is important to complete the full 12 weeks even if it seems like the virus is gone.

As for your side effects getting worse - that seems to depend on the person and on the side effect. (I am not sure that it would be related to a body getting Harvoni when the virus is nearly gone.) For some people, side effects lessen as time goes on, as though the body adjusts to the drug in some way and figures out how to coexist with it.

What side effects are you experiencing? There is such a range of possible side effects. But if you tell us yours, there may be people here who have suggestions about how to relieve specific side effects such as headaches or heartburn or insomnia or whatever. All have been reported with Harvoni. In any case, drinking plenty of water never hurts and usually helps.

All the best,
Kim
Title: Re: Harvoni Side effects
Post by: Katie on September 20, 2015, 03:01:00 pm
Sorry you are having difficulty, Mr Simple.  I felt GREAT while taking Harvoni (almost too good....giddy at times) until week 9 & 10 and went into severe fatigue and depression, and then one morning woke up feeling great again.  It depends on what you are experiencing and everyone is a bit different so as Kim stated, hang in there.

If your symptoms are dealing with cardiovascular, kidneys etc I would see your doctor as you don't want to ignore anything that may have serious consequences.

I also haven't felt good since for the past 6 months after stopping Harvoni, however my energy is returning and I am confident I will get back up to speed soon.  All of my tests and blood work came back perfect so it has been puzzling both for me and my doctor and I was worried it was the new normal for me, but I am improving so I am hopeful and so grateful to be Hep C FREE!

Take care and you are almost home free.  Hope you feel better soon!

Katie
Title: Re: Harvoni Side effects
Post by: Mugwump on September 20, 2015, 04:00:50 pm
im so sorry. im using my sons account. my son told me that if i ever have questions to ask on this website. sorry for the confusion.

The side effects started at the beginning of the third month.
I still have some fatigue post treatment the same as Katie and others.

So I would not say these are side effects of Harvoni, what I will say is that removing the virus seems to radically speed up the process of cell exchange in the liver. And as treatment progresses the amount of cell exchange increases. When someone has a hangover the exchange of dead liver cells creates exactly these same symptoms so fatigue and headache are to be expected as the liver heals itself.

I do not know if this theory is correct but it almost seems as if HCV has kept portions of our livers in a suspended zombie like state and as Harvoni kills off the virus the liver suddenly starts to heal faster than it was doing for years. The sudden healing of the liver then creates symptoms that we might not expect or be accustomed to.

Those who have a greater level of liver damage will then necessarily experience greater effects from the treatment. But again I do not attribute these as genuine side effects from taking Harvoni, instead I attribute them to the body reacting to sudden changes in the health of the liver and renal system.

I know that my liver had deteriorated to the point where any sudden change in my immune system meant possible liver failure so I was really lucky to have survived long enough for Harvoni and these miracle drugs to come along.

As another member, Phil has stated we are experiencing something new. People with more liver damage are being cured and we do not know exactly how our bodies will react. There is a very good thread about post Harvoni feelings that delves into this and I highly recommend it. http://forums.hepmag.com/index.php?topic=3212.msg26988#msg26988

All the best and I am certain you are on the road to being free from this horrible disease.

Eric
Title: Re: Harvoni Side effects
Post by: KimInTheForest on September 20, 2015, 04:19:24 pm
I also haven't felt good since for the past 6 months after stopping Harvoni, however my energy is returning and I am confident I will get back up to speed soon.  All of my tests and blood work came back perfect so it has been puzzling both for me and my doctor and I was worried it was the new normal for me, but I am improving so I am hopeful and so grateful to be Hep C FREE!

Hi Katie. I fell off a cliff post-treatment. I was housebound and even bedridden for most of my first 7 weeks post-treatment. I was experiencing extreme paralyzing fatigue, fever and massive night sweats. Yet no pathogen could be found, and I don't believe there was an external pathogen. I believe it was all an aftermath of treatment - perhaps a hypersensitized immune system that had not yet realized its job was over and it could go back to "normal' mode, or find its new normal in this post-HCV body. After 4 weeks, I started to pull out of it, but then went in for a B12 shot, which sent me right back over the cliff and into bed. That could be explained by the hypersensitive immune system theory. The shot put it on high alert again (as I believe any injection will.)

I could hardly eat and had already lost 10 lbs during treatment, so it was very scary. I have since lost another 5 lbs. When I could manage to drive myself a few blocks to a store, it was like I was in a woozy delirium.

I am happy to say that, in my case, my mysterious malaise seems to have broken as of yesterday. I am still anemic and low-energy from the ribavirin, but I no longer feel "sick".

But my main reason for responding to your situation katie (sorry for taking so long to get to it!), is that I found during lots of testing my doctor did in trying to figure this out, that I am actually deficient or at least low in a number of vitamins and minerals: iron, B12, Vit D, potassium, magnesium a bit. I was not "out of bounds" on any of these items. So many GPs who aren't informed about nutrition won't think there is a problem. But my GP is excellent on nutrition, attends conferences all over the continent on it. And her point is that it is not good enough to be 3.7 mmol/L on potassium (reference range 3.4-4.5). Most people will not feel or be their best below 4.0 or even 4.3.

So this is my long-winded way of asking if you have had some nutritional testing done for vitamins and minerals that are not normally tested. I had to pay for my Vitamin D test myself. But It was worth it. I am in the low end of "normal", when really everyone would benefit  from being above the current reference range (75-150 nmol/L) for best health, and to help recover from anemia (my situation).

All the best to you, Katie! :)

kim
Title: Re: Harvoni Side effects
Post by: Katie on September 20, 2015, 04:32:47 pm
Thank you Kim.  I agree with you that the normal ranges of things are not always the optimum for feeling your best as everyone is different.  I'll have to drag out my results and see exactly where I am as I was tested.  Unfortunately we don't have a naturopath here in our community.  About 10 years ago, my vit D level was at 13!  I was sick all of the time and had to insist for the Vit D test. The results did get their attention,   :-\  Living in a rain forest, they have since found, almost everyone here is low on Vit D.  I have been taking D supplements to boost it but can't get it above 38-40 and I can't expose myself to much direct sun as I have a history of basal cell.

Glad you are feeling better too.  I actually worked on my table saw yesterday and cut all the boards for the bookcase that has been waiting for me to get at since last March!  It felt good but I am stiff and worn out today.  Baby steps but it will get done!

Take care and keep in touch and for all of you not feeling all that good.  Keep the faith!

Katie
Title: Re: Harvoni Side effects
Post by: KimInTheForest on September 20, 2015, 04:50:36 pm
I always love hearing about your construction and woodworking projects, Katie. I used to do a lot of that myself. I love handling wood. Hope to get back to that more. I too live in a rainforest. Probably same rainforest, same Vit D deficiency. haha! ;)

kim
Title: Re: Harvoni Side effects
Post by: Scoutdoy on September 20, 2015, 07:52:28 pm
Eric I just read your statement and I think you are on the right track. I read quite a few threads on here and I have it seems that people with better liver scores f-0 and f-1 irrelevant of viral load seem to experience less side effects. Don't know if that is true or not but it seems that way.


Scout
Title: Re: Harvoni Side effects
Post by: beto on September 20, 2015, 07:56:15 pm
There is a tenet of homeopathy that believes that healing takes the reverse course of the disease.  So it is not something that just happens... one goes back through the symptoms in reverse order.  The idea is that the longer one has an affliction, the deeper the disease or dysfunction entrenched itself into the body.  Whether this idea resonates with anyone... for the most part, most of us have been bedfellows with HCV for many moons.  Regardless, there are true side effects from the chemical changes in the body directly from the drug and there are those that are part of the healing process and everything in between.  I like the notion brought up that bodies must adjust to the disease free phase.  With opiates, our bodies begin to incorporate the high endorphin state as normal... doesn't like it when we stop.  Lastly, as stated earlier, these drugs are fast.  We are talking death to virus in weeks.
Title: Re: Harvoni Side effects
Post by: byebyeC on September 20, 2015, 09:25:13 pm
There is a tenet of homeopathy that believes that healing takes the reverse course of the disease.  So it is not something that just happens... one goes back through the symptoms in reverse order.  The idea is that the longer one has an affliction, the deeper the disease or dysfunction entrenched itself into the body.  Whether this idea resonates with anyone... for the most part, most of us have been bedfellows with HCV for many moons.  Regardless, there are true side effects from the chemical changes in the body directly from the drug and there are those that are part of the healing process and everything in between.  I like the notion brought up that bodies must adjust to the disease free phase.  With opiates, our bodies begin to incorporate the high endorphin state as normal... doesn't like it when we stop.  Lastly, as stated earlier, these drugs are fast.  We are talking death to virus in weeks.

Hi Beto,

I really like the idea of visualizing what you said, seeing in my minds eye, the reversal of the bad things that hcv has done to me over the many moons :)

Thank you!
Title: Re: Harvoni Side effects
Post by: KimInTheForest on September 21, 2015, 12:38:23 am
There is a tenet of homeopathy that believes that healing takes the reverse course of the disease.  So it is not something that just happens... one goes back through the symptoms in reverse order.  The idea is that the longer one has an affliction, the deeper the disease or dysfunction entrenched itself into the body.  Whether this idea resonates with anyone... for the most part, most of us have been bedfellows with HCV for many moons.  Regardless, there are true side effects from the chemical changes in the body directly from the drug and there are those that are part of the healing process and everything in between.  I like the notion brought up that bodies must adjust to the disease free phase.  With opiates, our bodies begin to incorporate the high endorphin state as normal... doesn't like it when we stop.  Lastly, as stated earlier, these drugs are fast.  We are talking death to virus in weeks.

That's a very interesting concept, beto, about healing taking the reverse course of the disease. Thank you for sharing that.

kim
Title: Re: Harvoni Side effects
Post by: Lynn K on September 21, 2015, 02:25:25 am
Eric I just read your statement and I think you are on the right track. I read quite a few threads on here and I have it seems that people with better liver scores f-0 and f-1 irrelevant of viral load seem to experience less side effects. Don't know if that is true or not but it seems that way.


Scout

Hi Scout

Dunno I had a VL  about 2 million and F4 for 8 years but only side I had was anemia from the Ribavirin other than that not much to report

Best to all
Title: Re: Harvoni Side effects
Post by: gnatcatcher on September 21, 2015, 05:29:33 am
Like Lynn, I seem to be another exception (based on 74 days of Tx). I've had HCV for nearly 44 years, my VL has topped 9 million, and a FibroScan put me at F4, yet most days I have no side effects, and those few I've had have been very mild. I'll soon know if the post-treatment period will be as smooth. -Gnatty
Title: Re: Harvoni Side effects
Post by: Scoutdoy on September 21, 2015, 11:05:42 am
Kim and gantry that's great...what I meant by my post was that it seemed like people who were having a lot of side effects seemed to have lower liver scores. Not all people with lower scores. It probably has no correlation to it, it just seemed like it. Everyone is different.


Scout
Title: Re: Harvoni Side effects
Post by: Else on September 21, 2015, 12:07:59 pm
Like Lynn, I seem to be another exception (based on 74 days of Tx). I've had HCV for nearly 44 years, my VL has topped 9 million, and a FibroScan put me at F4, yet most days I have no side effects, and those few I've had have been very mild. I'll soon know if the post-treatment period will be as smooth. -Gnatty

Your signature stats are unbelievable, Gnat!  What a testament to the firepower of Harvoni.
Title: Re: Harvoni Side effects
Post by: Lynn K on September 21, 2015, 11:58:45 pm
Yup Gnatty

More or less the same here hep c for about 37 years with 3 tx with interferon based tx and a null responder plus relapsed on Sovaldi and Olysio last year and having cirrhosis for 8 years makes me tough to cure.

So finally on my 5th treatment of 24 weeks of Harvoni and 15 weeks of Ribavirin I am finally cured of hep c.

If I can beat hep c hopefully everyone can

Best to all
Lynn
Title: Re: Harvoni Side effects
Post by: Bree on September 22, 2015, 03:46:50 am
Yep, these drugs are miraculous!  My viral load was over 3.5M going in with a f1-2 score, yet at 4.5 weeks, undetected and negative.  Boggles the mind.  I love Harvoni.  I'm a lucky one.  I've had some moderate sides... I could list them but try not to talk about them too much as I don't want to give them focus and power.  I am empathetic to those with heavy sides ... I do understand... been there as interferon and riba almost killed me.  I'm hoping for an easy post treatment (I'm a little scared but trying not to be) and looking forward to SVR.
Title: Re: Harvoni Side effects
Post by: redcat36 on September 30, 2015, 01:26:35 am
Hi everyone,
I'm currently in my 5th week of treatment and had my first blood test since starting.  My numbers have dropped significantly: ALT = 24, AST - 27, Bilirubin - 0.6, and Viral Load = Detectable, but unquantifiable (less than 20).  I continue to have chronic fatigue syndrome, but other side effects barely noticeable.  My prescription costs have been $12 since the 3rd week.  The first one was $2598.  It looks like my total cost including blood test co-pays, and upcoming lab tests, etc. will total around $2850.  Yay!  Much gratitude to Gilead, Kaiser Senior Advantage (Medicare) and the medical staff at Kaiser for getting me approved for this miracle treatment.
Regards,
Larry
Title: Re: Harvoni Side effects
Post by: Katie on September 30, 2015, 01:30:48 am
Great news Larry.  You are well on your way so  welcome to the Harvoni Club!  Keep us posted and Congratulations on your great results as a STRONG responder!

Katie
Title: Re: Harvoni Side effects
Post by: concerned father on September 30, 2015, 07:59:36 am
After four weeks on Harvoni, my daughter is having her first blood test today.  I hope all goes well.  Other than feeling tired all the time, she is doing well.
Title: Re: Harvoni Side effects
Post by: gnatcatcher on September 30, 2015, 08:25:33 am
Glad your daughter no longer has occasional headaches. I hope she has not let the fatigue get in the way of some regular exercise, which is helpful mentally (the sense of accomplishment) as well as physically (muscle tone). Her viral load will probably be much lower than her baseline VL and may even come back undetectable. I look forward to hearing your report.

Gnatty
Title: Re: Harvoni Side effects
Post by: Else on September 30, 2015, 02:30:02 pm
Congratulations to all.  Progress!
Title: Re: Harvoni Side effects
Post by: mvnwy on September 30, 2015, 03:12:58 pm
Hi Art,

I am having side effects.  I'm in week 6 and will be doing treatment for 8 weeks total.  Had no cirrhosis and 4 million or so viral load.  First week I thought I was going to die, lol!  My mouth was raw inside, extreme fatigue, body aches, nausea, memory problems. 

Then on day 7 I started feeling better than I have in ten years!  That lasted 9 days.

Then gradually started getting tireder and started having joint pain, brain fog, depression, irritability.  Got on antidepressants and that really helped a lot.  So far, physical symptoms have slowly increased and I am SO glad  I only have 11 more days to go!!  I am sure these side effects are nothing as bad as previous treatments. 

At 4 weeks the virus was undetectable and my enzymes are in the 20s!  Pretty cool!!

I am still working a couple of hours a day.  Fortunately I'm self employed.  Seems to be so different for each person.  Out of the 40 people my doctor has treated with Harvoni, I'm only the second one with ANY side effects.  So odds are, yours won't be too bad.  This stuff works so whatever happens is well worth the pain.

Hope I didn't scare you but I have felt like the weirdest person in the world because most people feel so great on this stuff so it's good to know I'm not the only one. :-/
Title: Re: Harvoni Side effects
Post by: Cindy1955 on September 30, 2015, 06:22:48 pm
Hello all.  I am new to this site but have spent all day reading.  I want to thank you all for the information, humor and encouragement.
This will be day 3 for me with the Harvoni.  So far, side effects have been minimal.  I seem to be hungrier than normal but have been able to continue my daily exercise routine and hope I will be up for my normal long walk I generally take on the weekend (8-10 miles).

I was diagnosed with Hep C (Non A-Non B) in 1992.  Probably contracted in 1972 with a blood transfusion.  Thankfully, when I donated blood, they did the test so I was able to find out about it early-not that there was anything to do about it at that time :(

This is my first go at treatment and I am very encouraged by what I have read.

I know I will have other questions but just wanted to introduce myself.

Again, thank everyone for the information.

Cindy
Title: Re: Harvoni Side effects
Post by: gnatcatcher on September 30, 2015, 06:48:33 pm
Cindy, we are kindred souls -- infected via transfusions a year apart and treatment naive. I just took my 84th (final) Harvoni pill this morning, and it was thanks to reading this very thread that I was comfortable swallowing the first orange diamond twelve weeks ago. Like you, I was hungrier than normal but experienced minimal side effects. I continued my normal exercise routine throughout treatment and managed to gain only two pounds despite having a voracious appetite.

Welcome! I look forward to seeing your four-week lab results.

Gnatty
Title: Re: Harvoni Side effects
Post by: Else on September 30, 2015, 06:57:12 pm
Welcome Cindy!  You'll find lots of good info and camaraderie here.  Wow, that is a long walk you take.  It sounds like you're off to a healthy start.  Don't forget your water.  :)
Title: Re: Harvoni Side effects
Post by: slats1056 on September 30, 2015, 07:03:44 pm
Mvnwy Don't feel weird at all, I too had some pretty awful side the first 4-5 week. They began to taper off in severity by week 7. Don't give up! Just keep going forward one step at a time. I have been working full time during the whole 12 weeks. It's been rough as a cob at times!!! But I just think about the rewards all the pain brings with it.  I have 6 days left to EOT. The last 2 week have been the best so far. Still feel ragged but feeling pretty good overall!! Stay with it everybody!!!
See you on the other side with bells on!!!

 IF YOU THINK THINGS CAN'T GET WORSE, IT'S PROBABLY BECAUSE YOU LACK SUFFICIENT IMAGINATION! lol!!

 
Title: Re: Harvoni Side effects
Post by: Scoutdoy on September 30, 2015, 07:35:25 pm
Woo woo gnatty
Title: Re: Harvoni Side effects
Post by: Scoutdoy on September 30, 2015, 07:40:21 pm
Tommy, your on the final countdown, I am 11 days behind you. This really went pretty fast, it seems like just yesterday I took the first diamond.


Scout
Title: Re: Harvoni Side effects
Post by: Bree on September 30, 2015, 09:23:06 pm
I love that you all call them diamonds!  Not only for the shape but for the value!

mvnwy, hang in there re the sides.  It's worth it.

Gnatty... way to go, you did it! You are so awesome!

Cindy, welcome!  My appetite was all over the map... sometimes, famished, couldn't believe my appetite, sometimes not so much... I imagined my body was working hard and needed the nourishment.  I watched my diet (sometimes) and managed to lose about 3 pounds (was hoping for 5).  I had read that folks gain weight temporarily while on Harvoni so I went in aware... I figure that's not the most important thing to worry about on treatment!

Tommy and Scout almost home!  My body is catching up to itself but I must say, I'm feeling pretty happy!    Bree
Title: Re: Harvoni Side effects
Post by: slats1056 on September 30, 2015, 10:44:15 pm
  Scout, You go girl. Right there with You. I used to smoke 2-3 packs a day up until about 3 years ago. Think I am going to have to do something come New Years to go along with that SVR12 that will be coming up!
  Gnatty, You sunk My battleship!!! LOL, Cut back to about 7 1/2 liters. Lost about 10 lbs. since starting Tx. Seems I was flushing out more than just the little HEP buggers. Been trying to eat more fruit & veggies to help. Believe Me , that's pretty rough on an old meat eater like Me. Ironic that the last pill bailed on Your Harvoni buzz ain't it?
  Cal, WOW A personal stalker, Just what I've always wanted! Yippee! Catch Me if You can!!! I'll be lurking and skulking in the shadows, waitng & watching!!!! LOL.
  Mvmwy , Got Your PM, always good to have re-enforcements in the wings to give You some back up & a helpng hand when needed. Mine have been here on the forums. Great place to be. Hope You get to feeling better.
 Cindy1955, BTW, Hi & welcome . I almost missed Your post while I was posting to Mvmwy. Glad Your Sx's are easy, wish they all were.

KNOWLEDGE IS REALIZING THE STREET IS ONE-WAY, WISDOM IS LOOKING BOYH DIRECTIONS ANYWAY!
Title: Re: Harvoni Side effects
Post by: slats1056 on September 30, 2015, 11:21:30 pm
  Bree, To bad they are so hard to get for some who need them. Unobtanium I guess, so sad. I wish My butt would catch up with Me, it's still dragging behind Me a pretty good way!
 Hope everybody gets to feeling better! BTW, try to post Your Labs & info. on Your signature lines so we can all follow & compare!
Title: Re: Harvoni Side effects
Post by: Scoutdoy on September 30, 2015, 11:29:56 pm
Hey tommy, and everyone who has finished or on their countdown.....odd isn't it, how you really kind of do get to know the group of people who are going through treatment along with you. It's so nice for me to have this forum and to be going through the ups and downs with others who truly understand what hell I have felt, alone, for the last 20 years. Each week now, my group is finishing up their pills and almost everyone has had succesful numbers and are undetected! I am grateful that I had everyone here with me during this journey, I believe that is why it seemed to go by so quickly for me. I hope our group continues posting on the past tx forum so we can experience everyone making it to the 12 week svr. For the new group that is just starting out, you will understand what I am talking about in a few weeks.


Scout
Title: Re: Harvoni Side effects
Post by: Bree on September 30, 2015, 11:33:50 pm
Tommy, I had to look up Unobtanium - my what a big word, I'm impressed!  With so many new things in the pipeline, I do think the day will come it will be so much easier.  Not much help to those who need it NOW though.  I'm hoping everyone who needs these meds can get them soon. 

I'll be getting my EOT VL probably by Friday so I'll update sig line to reflect values, inc. LFT, etc. 

Just debating a walk... seems like too much... my little dogs, Sophie and Sebastian just stare at me, like really?  They have a whole yard, but not the same as greener pastures. ha.
Title: Re: Harvoni Side effects
Post by: Bree on September 30, 2015, 11:36:21 pm
Scout, here here to what you said!  We're like a team.  A winning team and cheering everyone on. 

I went thru inf/riba alone - freaked out my family and friends.  Lost a few friends along the way, and disrupted relationships with family.  Wish I had known about these forums then.

It will be so meaningful for all of us on the other side to see us all UND.  I really believe that is what will happen.
Title: Re: Harvoni Side effects
Post by: Lynn K on September 30, 2015, 11:58:15 pm
Unobtanium,imovabiliam, impermabiliam some of my favorite freshman chemistry words lol
Title: Re: Harvoni Side effects
Post by: beto on October 01, 2015, 01:05:17 am
Hey all,

So I had got some disturbing and painful information today that left me a bit out of it and depressed...so I high-tailed it to the docs office and asked for a copy of my recent labs.  Every time I started back over the negatives in my mind I just looked at my labs.  I don't think my liver enzymes were that low before hep.  That beautiful word "undetected". 

Interesting.  As I approach that final pill that hopefully pounds the last nail in the coffin of those tiny nucleotides wrapped in a protein shell, I realize that those little hep buggers were a part of me, mingling with my cells, communicating with my DNA and living in a sort of synergy with my being for 40 years.  Aint gonna miss em' but, so strange to think that they had a big hand in defining me.  I can't deny that they were part of who I was and therefore part of what I have become. 

The person today that was the bearer of bad news was probably amazed at my strength dealing with the information.  It occurred to me that perhaps the silver lining of this disease is that it has made me...and us...strong people.  People that do not quit. People that never relented against a virus that was taking our brethren and beating our treatments.

Bravo my fellows of the greatest graduating class of our lives.  We are actually doing this.
Title: Re: Harvoni Side effects
Post by: Philadelphia on October 01, 2015, 01:16:39 am
Hey Beto, it's important to have some good with the bad. Gives us something to cling to.

This is a virus I thought I would die with - probably die OF.

The possibility that I might be living without it, and continue to live without it, amazes me. This is a good time to be fighting this fight.

Best wishes for whatever ails you. :)
Title: Re: Harvoni Side effects
Post by: Bree on October 01, 2015, 01:27:30 am
Beautifully written sentiments Beto.  I like you, love seeing "Undetected" and "negative" on my paper and hopefully I'll have another one this Friday.

I must say, it's only been 3 days off Harvoni and I've been sick on top of that... still I feel all this "free time"... like it has been taking my time in my body and mind all this time, even subconsciously.  In addition to decades of that, it's taken 6 months to get it, 3 months on it and 3 for final results.  One year.  Trying to live life... cancel that ... living life anyway!  Some losses are good losses, if you know what I mean.  Even though, there's a readjustment and realignment process.

We are a strong group, not to be underestimated, and as my Mom always said "You have moxie"!  Wishing you and everyone lots of "free time"!
Title: Re: Harvoni Side effects
Post by: gnatcatcher on October 01, 2015, 04:29:41 am
. . . As I approach that final pill that hopefully pounds the last nail in the coffin of those tiny nucleotides wrapped in a protein shell, I realize that those little hep buggers were a part of me, mingling with my cells, communicating with my DNA and living in a sort of synergy with my being for 40 years.  Aint gonna miss em' but, so strange to think that they had a big hand in defining me.  I can't deny that they were part of who I was and therefore part of what I have become. . . .
beto, you are an eloquent graduation speaker -- literally our valedictorian!

Thank you especially for "those tiny nucleotides wrapped in a protein shell" -- finally, thanks to you, I have a science-based image for the little buggers. When I had cancer, I wasn't the type to visualize sharks attacking the cancer cells. As soon as I read that the problem with cancer cells was that, unlike normal cells, they don't die when they are supposed to (apoptosis), I found my image and method: to love them to death -- "No hard feelings, guys, but it really is your time to leave the stage."

Gnatty
Title: Re: Harvoni Side effects
Post by: Else on October 01, 2015, 10:08:13 am
Best to you, Beto, about your bad news.  :(  Just glad that you have the strength and intelligence to stay focused on the positive.

Quote
so strange to think that they had a big hand in defining me.
  I've had this very thought.  Often, lately.  More and more so, the better I feel.  It's not a negative reflection exactly.  Just strange.  Or maybe curiosity?  What is a "not sick" me going to be like?  I've likely been infected my entire adult life.
Title: Re: Harvoni Side effects
Post by: beto on October 01, 2015, 10:41:16 am
Well said Gnatty and you make a very good point in the direction that I was going.  Not everyone has to deal with these types of lingering illnesses...and many who do deal with them, don't really embrace them or rather, consider them as most of us on this forum have done.  It really puts us in a very special club.  The way you looked at cancer is so novel, yet it was that experience that brought out the innovative thinking.  This allows us to confront problem solving of all kinds with a different reproach.

I have been to other forums and I truly believe our energy, support and perspective is special right here at Hep C central.

Else- Thanks.  Yes weird to think about what it would be like without our nagging little friends that are with us everywhere we go every moment of our lives...then perhaps suddenly gone.  I did have a difficult revelation come to pass...if the same thing had happened 5 years ago, I would not have had my labs to carry me through it.

Bree - Yes...it is like the idea of getting reacquainted with your body.  Being sick with a cold or other virus your body is like exercising without having to keep the C in check.

So Gnatty, you know I really sucked in high school and was a long way from being a valedictorian...who would have expected me to me at the top of my class in hepatitis C school :)
Title: Re: Harvoni Side effects
Post by: slats1056 on October 01, 2015, 10:52:25 am
 Heavens to mergatriod, exit stage left----and fade to black. Hep c free is going to be an adjustment. Physically, mentally , spiritually, virtually , ETC.ETC. Like Beto said he just kept going back to the lab results. I don't know , maybe I'll frame it as My graduation Diploma and shrink and laminate a copy for the wallet to look at when things get bad. Bravo Beto , extremely well written.
  As one ponders their own mortality the ever looming thought of dying from the virus directly or from its' many complications ( many of which are yet to be discovered ) is never far away in the subconscious. I personally had doubts of making it to retirement age without My Liver falling out of My butt! ( I know!!!not a good visual ) Always the Joker , Yet just under the surface Serious beyond the facade.  A defense mechanism? A way of coping? Fear of the unknown? One thing is sure I do not fear death. I will cheat the reaper as log as humanly possible though!! In that time I will attempt to make up for the lost time from My early adulthood  ,through thirty six plus Year with My wife , raising three wonderful children ( who I am extremely proud of ,Yet don't seem to tell them often enough ) , two beautiful grand kids . As well as the many sacrifices only You people here can begin to understand. Maybe I should start with apologizing for My distant attitude to all that have been close to Me over the years. ( Probably better read as being an asshole that pushes people away, at least I have been told that. Not My words! )
 Beto got Me to thinking , all of the positives are that much sweeter and enjoyed more so in spite of the negatives!!! Maybe it is time I tried to break down the wall that I have built around myself in the last forty plus years! Live more , love more and be more compassionate to those close to Me and to My fellow Man!!!

 Here is to good health , good fortune, good friends , a good life , and all that is good that we have missed over the many Years of suffering in silence with this scourge to Mankind. Still thinking about designing a Tattoo of My avatar to celebrate SVR24!! So there take that You Little Hep C Bastards!!!!!!!
Title: Re: Harvoni Side effects
Post by: Scoutdoy on October 01, 2015, 11:18:55 am
Tommy don't do it,,,that's how I got my hep c!!!! Don't take the chance with a tattoo. Unless you make it a temporary one. LOL....After living with this nightmare for 30 years, I am not getting it back!!!  I did think about having a shirt made though



Scout
Title: Re: Harvoni Side effects
Post by: gnatcatcher on October 01, 2015, 12:06:08 pm
. . . I have been to other forums and I truly believe our energy, support and perspective is special right here at Hep C central. . . .

So Gnatty, you know I really sucked in high school and was a long way from being a valedictorian...who would have expected me to me at the top of my class in hepatitis C school :)

. . . I did think about having a shirt made though . . .

Yes, the members of these Hep Forums are remarkable for the genuine community we have formed. We've been really real with each other, even those of us using pseudonyms so that we could be frank on the web about diagnoses, etc.

beto, in case you didn't take Latin, a valedictorian is literally the person who says farewell to _____ (in this case, to  "those tiny nucleotides wrapped in a protein shell").

Scout, great idea about the shirt. Much earlier in this thread, (http://forums.hepmag.com/index.php?topic=1653.msg15535#msg15535), Katie said she was turning her three empty bottles into a mobile, which is also a great idea, but your idea is much more public and thus might educate some people.

Gnatty
Title: Re: Harvoni Side effects
Post by: KentAmos on October 01, 2015, 03:13:27 pm
Well this is my first time here and I have been reading a LOT and learning a little more about what is going on. I have now been on Harvoni for 7 weeks and will be off by Nov9th so I then go and get my blood test.
I really have to say that I started working on my treatment last Oct and after being turned down by BCBS 3 times I got approved through Giliad ( thank you).
I have to say that I am way out of the loop. I do know that I get Hep C back in 1993 with a blood transfusion but I have never had any issues with it ...so far. I waited as the other treatments looked horrifying and I figured something would come along...yea!!.

I have had no side effects that I can see. I do ache in my joints and I feel a little bloated(swollen) but other than that pretty good overall. My doc was little or no help with getting the treatment and I have pretty much been winging it along the way. So I hope when I go and get my blood treatment in Nov I come in clean.
Title: Re: Harvoni Side effects
Post by: Scoutdoy on October 01, 2015, 03:17:18 pm
Kent, have you had any blood tests since you have been on treatment? I haven't had any side effects to speak of either, except more energy and less pain in my joints. Good luck and the rest of your time will go by fast.



Scout
Title: Re: Harvoni Side effects
Post by: kbalcom on October 01, 2015, 03:29:42 pm
Hello everybody!
      I am new to the site. It's wonderful to see people come together and not let this disease get them down. I am Hep C positive but I am on Horvoni. I'm on my second month and I'm having the usual nausea, headaches and SERVERE insomnia But the worst is I'm having trouble breathing. Keeping breath in. My lungs burn most the time mlnow for about a week now. I went to the ER and he thinks it's because of how I'm eating combined with 15 pound weight gain... Im 145 pounds and I dont think I eat crazy... I've never been this big before but I've never experienced anything with my lungs until I started Harvoni. I was wondering if anybody else has anything happen with their lungs during being infected or on Harvoni. Just because it doesn't sound right to me. Im thankful for this site and people who are brave enough to be open. Every each one of you are in my prayers And I look forward to getting to know you. God Bless.

Katie
Title: Re: Harvoni Side effects
Post by: KentAmos on October 01, 2015, 03:47:10 pm
No SCOUT nothing I am flying blind but I did do a lot of reading. They told me to do this and come back once I was through and get a blood test. HAHA.
Title: Re: Harvoni Side effects
Post by: Scoutdoy on October 01, 2015, 04:38:57 pm
Wow, that's odd. The only reason I say so is because people make mistakes. They are only human. When it comes to my life or my family, I know everything that is going on. The mistakes I have found have literally saved my life. That's your deal though, and if you're comfortable with it, that's all that matters. Good luck to you, I am sure you will beat this thing


Scout
Title: Re: Harvoni Side effects
Post by: Mugwump on October 01, 2015, 05:02:31 pm
Hello everybody!
      I am new to the site. It's wonderful to see people come together and not let this disease get them down. I am Hep C positive but I am on Horvoni. I'm on my second month and I'm having the usual nausea, headaches and SERVERE insomnia But the worst is I'm having trouble breathing. Keeping breath in. My lungs burn most the time mlnow for about a week now. I went to the ER and he thinks it's because of how I'm eating combined with 15 pound weight gain... Im 145 pounds and I dont think I eat crazy... I've never been this big before but I've never experienced anything with my lungs until I started Harvoni. I was wondering if anybody else has anything happen with their lungs during being infected or on Harvoni. Just because it doesn't sound right to me. Im thankful for this site and people who are brave enough to be open. Every each one of you are in my prayers And I look forward to getting to know you. God Bless.

Katie
It is really important to be easy on yourself during treatment for HCV, Harvoni included. But even more so for the older treatments. Rest, good hydration, moderate exercise and a balanced diet seem to be the very best way to deal with treatment. Even some medical professionals are not up to speed on this treatment yet. So some of us are indeed winging it.

If your blood pressure increases then please try to do things to relax, my BP over all did increase at about 14 weeks during treatment but in the last 5 weeks of 24 it came down to a more safe level. You will find that this treatment does effect everyone differently. Be careful with what other meds you take and consult the nursing hotline at Gilead if you are at all unsure about a drug that you are either prescribed or have purchased over the counter. If you have cirrhosis this includes especially any high dose nsaid based over the counter meds like some cold remedies that include ibuprofen or aspirin in large doses are not a good thing at all.

There should have been an info sheet included with the med that has the contact number for nursing support and side effect reports. I encourage you to use it and carefully report your problems because this it the first time I have heard of anyone breathing difficulties during treatment.

Take good care of yourself and I truly hope you and others finding difficulty reach a balance to get through as easily as possible. We all cry inside when we see other people either relapse or stop treatment so big hugs and do the best you can and I know you will knock this disease to hell where it belongs!

Eric



Title: Re: Harvoni Side effects
Post by: Bree on October 01, 2015, 06:47:43 pm
Katie and Kent ~ Welcome to the forum and to the wonders of Harvoni!

Katie, I would talk to your liver specialist about the breathing thing.  Rapid weight gain can cause breathing issues upon exertion, but not sure on the extreme issue (burning, etc.) you are having. 

Kent ~ Best of luck to you on your journey!

I just completed Harvoni 4 days ago... feeling really optimistic.  That's a great side effect!!!
Title: Re: Harvoni Side effects
Post by: kbalcom on October 02, 2015, 03:17:10 am
Eric,
  Thank you so much for replying. I hope this shows up because ive never been on a forum before and im still learning on how this works lol :-[ but your reply really did give me comfort, I was starting to  freak out... But I  do forgot how young this drug really is and to think that maybe this is just a side effect for me really did help. With the er saying that my tests were OK, your reminding this and having a doc appts. made, I'm in better spirits.  ;D I did think it was going to be a more Hands-on doctor though. I do want to get a nutritionist. I'm going to look into that. Thank you so much for Your guidance. I'm really glad I found this forum. I've lived with this for almost 4 years now and have only told literally my doct or and my counselor/therapist. So it is really nice to be able to share.. Really nice. Lol Hopefully we will speak again in the future. Have a great night, sleep well and have an incredible tomorrow!
   O And Bree thank you for welcoming me and also with the great advice! I'm definitely going to do that.  :D Thank you so much. God bless
Title: Re: Harvoni Side effects
Post by: gnatcatcher on October 02, 2015, 11:14:23 am
. . . One thing is sure I do not fear death. I will cheat the reaper as log as humanly possible though!! In that time I will attempt to make up for the lost time from My early adulthood  ,through thirty six plus Year with My wife , raising three wonderful children ( who I am extremely proud of ,Yet don't seem to tell them often enough ) , two beautiful grand kids . As well as the many sacrifices only You people here can begin to understand. Maybe I should start with apologizing for My distant attitude to all that have been close to Me over the years. ( Probably better read as being an asshole that pushes people away, at least I have been told that. Not My words! )
 Beto got Me to thinking , all of the positives are that much sweeter and enjoyed more so in spite of the negatives!!! Maybe it is time I tried to break down the wall that I have built around myself in the last forty plus years! Live more , love more and be more compassionate to those close to Me and to My fellow Man!!! . . .

Bravo, Tommy! While you're letting Harvoni heal your liver, you've been learning how to heal your heart. Glad you don't fear death. Also glad you're in no hurry. My own "ideal death" is this: my metaphoric heart has a separate room in it for each person who seems to want to spend time at Gnatty's B&B. It's amazed me that so many rooms can be added on to one beating human heart without the whole thing collapsing from the weight of everyone's traumas. But the time will come when there is simply not enough room in my body to contain that ever-growing heart. That'll be the moment for the inevitable metamorphosis.

Welcome, KentAmos and Katie.

Gnatty
Title: Re: Harvoni Side effects
Post by: slats1056 on October 02, 2015, 01:05:01 pm
  Katie & Kent, Welcome to the World Wide Harvoni Travelling Circus!!! Glad You are here. Hate it that You had to come!
   Kent, I would ask the Doc in charge of Your treatment if copies of Your labs are available. Helps so You know where You stand. Glad the Sx's are minimal for You.
   Katie, That avatar cracks Me up! Love it. Sorry Your having a rough time with the Sx's. Hope they let up for You. I had a rough time the first 8 weeks , but they seem to have let up approach EOT.  FOUR MORE DIAMONDS LEFT FOR ME!!! I have not had any breathing problems. Best to have that checked out to be on the safe side. As long as the Doc isn't worried about the weight gain , don't worry about it right now. Concentrate on the treatment.
    Just remember, when in doubt ask question! Stay hydrated. Try to eat right. And above all try to laugh as much as possible!!

   Gnatty, I am picturing a Heart Shaped Resort Called Gnattys' Place ! With a flashing Neon sign that reads---- WE ALWAYS HAVE ROOM FOR YOU!!!!!!! That way even when Your physical form departs , Your Spirit will live on forever. BTW, Premises are always under construction!!
 
Title: Re: Harvoni Side effects
Post by: gnatcatcher on October 02, 2015, 07:15:11 pm
Hey all,

So I had got some disturbing and painful information today that left me a bit out of it and depressed...so I high-tailed it to the docs office and asked for a copy of my recent labs.  Every time I started back over the negatives in my mind I just looked at my labs.  I don't think my liver enzymes were that low before hep.  That beautiful word "undetected". 

Interesting.  As I approach that final pill that hopefully pounds the last nail in the coffin of those tiny nucleotides wrapped in a protein shell, I realize that those little hep buggers were a part of me, mingling with my cells, communicating with my DNA and living in a sort of synergy with my being for 40 years.  Aint gonna miss em' but, so strange to think that they had a big hand in defining me.  I can't deny that they were part of who I was and therefore part of what I have become. 

The person today that was the bearer of bad news was probably amazed at my strength dealing with the information.  It occurred to me that perhaps the silver lining of this disease is that it has made me...and us...strong people.  People that do not quit. People that never relented against a virus that was taking our brethren and beating our treatments.

Bravo my fellows of the greatest graduating class of our lives.  We are actually doing this.

Beto, I'm sorry that today you're dealing with yesterday's bad news just when you would otherwise be celebrating the end of treatment. I hope having the printout of those labs continues to elicit your inner strength. Beto ~--> to Be

Pulling for you,

Gnatty
Title: Re: Harvoni Side effects
Post by: Squiggles on October 06, 2015, 08:02:18 pm
I started Harvoni 11 days ago.  I take it at 8AM with a large glass of water and I usually eat breakfast soon after.  I had a mild headache a couple of days- not even enough to take some Tylenol.  Other than that, I would say I am side -effect free.  So far.  I feel clearer headed at times and also a bit less fatigued.  Is is possible I am only imagining this?  I do have a good imagination.   How soon should one begin to notice something getting better?  (thoughts clearer, less fatigue etc)
Title: Re: Harvoni Side effects
Post by: gnatcatcher on October 06, 2015, 08:16:40 pm
Either a lot of us imagined it, or it's for real. That extra energy some of us call the "Harvoni High." While I was on Harvoni, I also had faster response times. Enjoy!
Title: Re: Harvoni Side effects
Post by: Scoutdoy on October 06, 2015, 08:19:51 pm
Sqiggles, I would say about day 8 I started feeling better and had a burst of energy. My joints started feeling better and my quality of sleep started improving


Scout
Title: Re: Harvoni Side effects
Post by: Else on October 06, 2015, 08:37:37 pm
It's for real, Sqiggles.  Harvoni really does work that fast.  Not your imagination!  Enjoy the new you.
Title: Re: Harvoni Side effects
Post by: Katie on October 06, 2015, 09:27:55 pm
Just to let you know the Harvoni High was the best I felt in decades but after the last pill....it vanished.  In fact my fatigue was worse than before treatment.  Slowly I am getting energy back.  There are many other benefits such as my insomnia and brain fog is gone, which I suffered with for years, but I am really hoping to get my energy and get up and go back.  I stopped treatment the end of February so it's been some time.  This isn't the case for everyone but wanted you to be aware of it.

Katie
Title: Re: Harvoni Side effects
Post by: perineuro on October 07, 2015, 04:11:37 am
Hi.  I just started Sovaldi + Ribavirin on Sept 14 and this past week (HCV /w cirr, Gtype 2b) I have had a lot of difficulty with breathing.  It is hard to inhale deeply and exhale.  Its as if you just can't quite get there.  But as you go through the day, or days, and you go for that deep breath in and your lungs feel heavy and painful...  and "it works" you got your breath...  you feel so relieved.  But it is a desperate struggle and I did not know anyone else was experiencing this as well.  I also have Peripheral Neuropathy and I think that adds to the extreme difficulties of just trying to breath, chew your food and swallow, and laugh, and try to remember if you just took that last pill or not....  I know this will go away,,, and I can't wait....  but I also think we are all learning from each other here.  and probably making medical history. 
Title: Re: Harvoni Side effects
Post by: beto on October 07, 2015, 10:49:52 am
I posted on this subject elsewhere last night, but since I have joined the aftermath brigade, I feel obliged to post here as well.  Though I have not fallen "off a cliff" as reported by Kim and others, my body is not right either.  I wake up achy which is something I have not experienced for a while.  I feel like I am fighting something part of the time, achy, week, slightly feverish.  I have some kind of urinary tract infection (which might be causing other issues) that just developed that may coincide with the withdrawal. 

Yes, I wonder if they are in essence withdrawal symptoms of sorts.  We are on a powerful drug that becomes our immunity force and a part of our biology for 12 to 24 weeks.  Then there is the factor of HCV most definitely a part of our biology for decades, gone in a flash.

I love to speculate (and that is all that I am doing here),  our immune systems may have to find a rhythm again.  Also, other viruses like herpes, EBV may have set up shop and are now face a renewed (or renewing) immunity.

Whether there is any validity at all for those ideas...something does seem to be happening post treatment, and believe me I am not complaining...unless I relapse...and then I will complain plenty  :) 

I am going to call Gilead to find out about reports.  We can't forget we are still guinea pigs...lucky ones though.
Title: Re: Harvoni Side effects
Post by: gnatcatcher on October 07, 2015, 11:09:21 am
Like Beto, I am recently post-Tx. Beginning when there was very little Harvoni left in me (based on its half life), I started experiencing a thoroughly achy body and began needing enormous amounts of sleep. I have done the same exercise routine for years; during treatment it was easier than before treatment, but post-Tx, the strength and flexibility exercises have become noticeably more difficult than ever before. No fever or UTI to report.

Gnatty
Title: Re: Harvoni Side effects
Post by: Bree on October 07, 2015, 03:33:58 pm
I'll weigh in on 10 days post treatment.  Finally starting to sleep about 6 to 6.5 hours.  Wake up often but able to go back to sleep.  Been trying to walk everyday.  Yesterday was kind of weak.  My aches have diminished.  I was having neck, shoulder discomfort (which is not unusual for me anyway but it felt increased so I wasn't sure it it was related or just me).  I've noticed that's mostly gone!  Loving that part. 

I'm just getting over a bug (I think it was a bug because my son and others were sick and it started a few days before treatment ended).  They got better...but for me, I'm slowly coming out of it so hard to tell what is from what.

Body feels warm like slight fever, to the point that yesterday I was thinking if this doesn't subside I'll need to go to GP.  Also a little light-headed.  I still think I'm   starting to feel a little better each day.  It comes and goes.  Still a few highs (mostly gratitude highs)... I'm trying to expand on the feel good stuff as much as I can. 

I also think that it's a matter of giving it time.  We've been through a lot and it takes time for the body to re-acclimate to it's new system.  Miraculous bodies we have.  Still in awe.

Title: Re: Harvoni Side effects
Post by: beto on October 07, 2015, 04:06:35 pm
Bree, Gnatty

I think we are all on our way and I am sure we will be kabitzing over this for weeks to come.  We all are have similar post treatment experiences.  I called Gilead and spoke with a very nice but not very informative nurse from there.  It is like they have to be so careful with information and speculation.  We are the ones that seem to have the most info with respect to the experience itself.
Title: Re: Harvoni Side effects
Post by: Bree on October 07, 2015, 04:47:03 pm
I called Gilead when I first started Harvoni and it was the same thing with the nurse.  Nice but only could quote the pamphlet.  I never called back.
Title: Re: Harvoni Side effects
Post by: Katie on October 07, 2015, 05:14:23 pm
Actually I called Gilead about the post side effects and they actually contacted my doctor for the information as well as calling me back for more details.  I was impressed with that.  Might just depend on who you talk to but that wouldn't seem very efficient if they are collecting data on after treatment complaints.
Title: Re: Harvoni Side effects
Post by: Scoutdoy on October 07, 2015, 05:59:09 pm
Katie, it makes sense kind of about the post tx...they have what they want about the during treatment info...but the post effects can last for years and the more information they gather, good or bad, will be used for long term studies. I may be wrong, but that is what it sounds like


Scout
Title: Re: Harvoni Side effects
Post by: Katie on October 07, 2015, 06:37:48 pm
I agree Scout.  Others haven't been pleased with Gilead's respose when they called so I wanted to share what I found. 

I would think the post side effects would be something everyone would want to be informed of.  Doctors, insurance companies ( :P ,Gilead and most of all the patients.  It is difficult enough to have a big drop off in how you feel after treatment when all your bloodwork comes back perfect in every way.  They tested me for thyroid, nutrition, vit D and it was all fine.  I was to the point of hoping they'd find something as 6 months is a long time to feel rotten and have them tell you you're fine. Especially worse than before treatment.  I really would like to know exactly what was in Harvoni that picked me up to the level of high energy, motivation, good spirits and the ability to find JOY in the little things.  All of that is gone and worse than before.  It was like a taste of the good life and then snatched away.  HA!

I am doing OK and glad I am healthy.  Knowing that gives me an optimistic view that I will get back to being my productive self.  Life is good, but I can't wait for it to be better!

Katie
Title: Re: Harvoni Side effects
Post by: coastal girl on October 10, 2015, 06:50:26 pm
Hi, Is a lowered platelet count something others have experienced.  My doctor sent me a very vague results letter..I'm pretty fed up with this doc.  She says viral load is essentially undetected...what, give me a number...the results belong to me, stop hoarding them doc!  No #'s on my ast or alt either...says there is no essential change in labs except for platelets going from 104 to 91.  And essentially undetected viral load...how can my viral load be almost cleared and my enzyme levels stay the same...doesn't make sense ... any input?
thanks,
Title: Re: Harvoni Side effects
Post by: Scoutdoy on October 10, 2015, 06:56:31 pm
Get a copy of your labs,,,,that's like someone saying I am a little pregnant...you either are or your not....



Scout
Title: Re: Harvoni Side effects
Post by: coastal girl on October 10, 2015, 07:09:05 pm
Yes, I have been collecting copies of my health records ever sense being diagnosed with HCV in 2006.  I was planning on picking them up on Tuesday as that is when I will be heading thru town.  I just happened to receive her letter first...looks like a form letter they send to all of their patients...all except the lowered platelets!
I will be writing her a note about my disappointment in her letter of test results.  She should know better, that I for one, would not be content with this vague description of results.  I have actually had to school her on a few of the test I received...she said "oh I wish more patients would be more knowledgeable of their conditions as you are"  then send me that letter!!!!   Grrr >:(
It's all good though...I'll get thru this treatment for which I am very grateful and start on getting my liver tuned back up...I'm so excited for that time to come!!
I have a plan  ;)
Title: Re: Harvoni Side effects
Post by: KimInTheForest on October 10, 2015, 07:40:23 pm
Hi Coastal Girl. You'll know all you need to on Tuesday when you pick up copies of your lab results. It's certainly true that each of us needs this data in our own possession, not filtered through our doctors with vague descriptions of this and that. Each of us needs to know our numbers, and also see what the reference range for that test is, since labs differ. That way we can know how far out of range our numbers are. Good luck!

kim :)
Title: Re: Harvoni Side effects
Post by: KimInTheForest on October 10, 2015, 07:52:00 pm
Hi, Is a lowered platelet count something others have experienced.  My doctor sent me a very vague results letter..I'm pretty fed up with this doc.  She says viral load is essentially undetected...what, give me a number...the results belong to me, stop hoarding them doc!  No #'s on my ast or alt either...says there is no essential change in labs except for platelets going from 104 to 91.  And essentially undetected viral load...how can my viral load be almost cleared and my enzyme levels stay the same...doesn't make sense ... any input?
thanks,

I think you are still okay (as in not in danger) at a platelet count of 91, if I am reading this chart correctly:

http://www.biooncology.com/clinical-trials/clinical-endpoints/toxicity-criteria

That seems to place you in "Grade 1 Toxicity", which is "mild with no intervention required". The lowest my platelets dropped during treatment was to 122 giga/L (also Grade 1 Toxicity). No one was worried. I got the impression I would have to drop to 30 or something before there would be real concern.

(I think 75,000/mm^3 is equivalent to what we are calling 75.)

best,
kim

Title: Re: Harvoni Side effects
Post by: coastal girl on October 10, 2015, 08:06:08 pm
thank you for the link Kim...feeling better about platelets.
So I guess lowered platelets are common among us on TX?
Not used to these sudden drops in numbers...have always used alternatives instead of pharms.
Title: Re: Harvoni Side effects
Post by: KimInTheForest on October 10, 2015, 08:22:43 pm
thank you for the link Kim...feeling better about platelets.
So I guess lowered platelets are common among us on TX?
Not used to these sudden drops in numbers...have always used alternatives instead of pharms.

I think lowered platelets are not uncommon on Hep C treatment. I think also our platelets may get stuck in our spleen when on treatment, so they are not circulating in our blood.

best,
kim
Title: Re: Harvoni Side effects
Post by: gnatcatcher on October 10, 2015, 08:51:49 pm
Having actually had a separate disease (ITP, with the T standing for Thrombocytopenia) of extremely low platelets before I got HCV, I can tell you that the telltale symptom was purple spots all over my legs. My platelet count was down to 1,000 (where 150,000 was bottom normal). That was in 1970, and I'm still here  ;D
Title: Re: Harvoni Side effects
Post by: Scoutdoy on October 10, 2015, 09:05:24 pm
Gnatcatcher I was just looking at your sat and alt in May..wow they were pretty high...could you feel the difference when they dropped so quickly?


Scout
Title: Re: Harvoni Side effects
Post by: coastal girl on October 10, 2015, 09:33:34 pm
Gnatcatcher, I believe ITP may be the condition my sister had a couple of years ago.  She was hospitalized for a couple weeks if I remember correctly with extremely low platelets as you did.  It was a very scary time for her and our family.  She seems to be doing fine now! So grateful for that :)
Can't wait to get my hands on my test results on Tuesday and see my true viral load and other #'s
Title: Re: Harvoni Side effects
Post by: Scoutdoy on October 10, 2015, 09:55:04 pm
I am gonna guess your viral load is gonna be like <15 detected. Considering your starting at almost 13 million that's huge. I was at 13.9 million and was <12 negative, but they said "minimal" detection like your letter said. I was confused too. Never did find out why it said negative. I had a different lab do the test 2 weeks later and it came back undetected. Harvoni is powerful stuff. You will be cured and so will I.


Scout
Title: Re: Harvoni Side effects
Post by: Scoutdoy on October 10, 2015, 09:57:47 pm
Oops I have the little arrows pointing the wrong way on previous text. Sorry. Should be >15 and >12. Jeez forgot my math. Less than. Ok now I have confused myself...lol...

Scout
Title: Re: Harvoni Side effects
Post by: gnatcatcher on October 10, 2015, 10:09:55 pm
Gnatcatcher I was just looking at your sat and alt in May..wow they were pretty high...could you feel the difference when they dropped so quickly?
Scout, the only thing I felt was the surge of energy from the Harvoni. Never during the almost 44 years of HCV did my liver hurt; increasing fatigue was my only symptom. Strange, huh?
Title: Re: Harvoni Side effects
Post by: Katie on October 10, 2015, 10:16:02 pm
You now are saying greater than 12 or 15 which is >12 or >15.  They usually are <12 or <15 which is less than.  That is the sensitivity of the test where they can't count below the 12 or 15 but may still be detecting a few or just fragments of the virus or if it states specifically negative or undetected the meaning is no detection of the parasitic virus.

I don't want to confuse anyone but if you have questions on what I wrote let me know and I will try to explain it better.

Congratulations as you are both on the path of a cure, no matter what!

Katie
Title: Re: Harvoni Side effects
Post by: Scoutdoy on October 10, 2015, 10:16:45 pm
I think the energy is a huge symptom. A friend of mine died from cirrhosis and he didn't really complain of pain but the fatigue was overwhelming for him. Could barely lift up his arms.  He turned orange and at the end retained a ton of fluid that made him uncomfortable, but no excruciating pain.


Scout
Title: Re: Harvoni Side effects
Post by: gnatcatcher on October 10, 2015, 10:17:33 pm
Gnatcatcher, I believe ITP may be the condition my sister had a couple of years ago.  She was hospitalized for a couple weeks if I remember correctly with extremely low platelets as you did.  It was a very scary time for her and our family.  She seems to be doing fine now! So grateful for that :) . . .
Yeah, looking down and seeing the purple spots all over my legs was scary. So was realizing that the doctor I saw then didn't know what I had. When it was diagnosed a couple of days later, just having a name was a relief.

Glad your sister's doing well. I assume medicine cured her. Unfortunately, I didn't respond well enough to the medicine, so they took my spleen out and the transfusions gave me HCV, something that of course wouldn't happen these days.
Title: Re: Harvoni Side effects
Post by: Scoutdoy on October 10, 2015, 10:19:16 pm
Thanks Katie, I couldn't remember which way the arrows went . Hope I didn't mess anyone up,,,except myself of course. May have to join my 7 yr old in math class next week at school



Scout
Title: Re: Harvoni Side effects
Post by: Katie on October 10, 2015, 11:06:32 pm
Hey Scout....no biggie.  You might find the New Math more than you bargained for!  LOL
Title: Re: Harvoni Side effects
Post by: Scoutdoy on October 10, 2015, 11:28:05 pm
No kidding Katie, I already know I can't pass the new 5th grade division section. My daughter brought that home one night and I shared it with my husband and he said "what the hell is that" "it's the new way they do division" we couldn't do it, and we have college degrees..how sad is that?


Scout
Title: Re: Harvoni Side effects
Post by: Katie on October 10, 2015, 11:49:20 pm
I find it really amazing that they took a very up front way to do calculations and complicated it.  The more you have to write down the more likely to make mistakes.  I understand it's good for them to see how things break down but that is why we have multiplication tables.  I think it is a huge mistake and is going to compromise our children with their problem solving skills.  I would certainly show your kids the correct way to do math so they have a check for what they do.  The more they know the better.  My personal opinion as a biologist who loves math!

Katie
Title: Re: Harvoni Side effects
Post by: Scoutdoy on October 11, 2015, 12:39:01 am
Katie, I was summoned to the school because we showed her how to do division the old way (in 3 steps instead of 14) and at the conference we agreed that she would learn both ways, I would teach one way and they the other because of exactly how you put it, the problem solving skills are going to be obsolete. uggggg that was the first year this math was started in our schools here. It's ironic that that 5th grader is starting med school at KU next fall in research medicine. Who knows maybe she will study HCV or HIV ... October 18 is my last pill day! And getting blood work done the next day. I feel kind of nervous about the last blood work..I have no idea why. Every muscle twitch or any little odd feeling and I think to myself oh gosh,,,did it come back? I haven't thought this way the whole treatment until the last few days. It's strange


Scout


Scout
Title: Re: Harvoni Side effects
Post by: Else on October 11, 2015, 12:57:36 am
You now are saying greater than 12 or 15 which is >12 or >15.  They usually are <12 or <15 which is less than. 

Math tips from a liberal arts major: the "mouth is always eating" in the larger (greater) direction.  < nom nom nom

Hey, worked for me or I'd never have gotten that straight.  :o
Title: Re: Harvoni Side effects
Post by: Katie on October 11, 2015, 01:02:33 am
Hi Else...That's a new one on me, but whatever it takes. ;D

Happy to hear you finally got the approval!  Thank the universe!

Katie
Title: Re: Harvoni Side effects
Post by: Katie on October 11, 2015, 01:11:38 am
Scout:  I think being apprehensive at the end of treatment is pretty normal so just remind yourself on how good you've been doing and what the results for others has been.  I wasn't totally convinced I had it beat until SVR24.  I just don't trust those little, nasty, parasitic viruses, no matter what anyone says.  They are like aliens!  I actually was detected <12 at EOT which was shocking as I was a strong responder and by 7.5 weeks post treatment I cleared it and remain clear.  There have been several of us with the same scenario so never give up hope.  If the count keeps dropping and is a small count your chances are good so keep getting tested!  If you have viable viruses lurking about they will replicate and the count will increase, as that's what they do.

Good night and it sounds as if you have a brilliant girl.  We need more Women in Science!

Katie
Title: Re: Harvoni Side effects
Post by: beto on October 11, 2015, 12:31:45 pm
The waiting game.  It sure puts the nerves on alert.  Scout, take it from Katie...having to get through treatment to find you are detected, has got to suck.  Most will not have to go through that roller coaster ride.  I have been following posts for some time now and have seen posts at the moment the poster got the news.  Then down the line the excitement to find that their bodies took care of business and they clear. 

I recently (one week ago) finished tx.  Saying goodbye to those little saviors is tough and waiting for the final blood draw even harder.  The good news is that the virus, if not completely gone (usually is) is knocked back so far that our immune systems can finish the job.  I know it is hard to trust an immunity that let you down before, but we have a lot of reasons to keep the faith.

Katie and others have proven that even a "<12 detected" can still be a hopeful sign.  Katie and others are the pioneers of that phenomenon.  Another reason to stay on this forum.

Thanks to all of you "trailblazers"
Title: Re: Harvoni Side effects
Post by: coastal girl on October 14, 2015, 01:50:38 pm
Oh my Goodness, so excited!!!!!
I picked up my test results yesterday and my viral load (4 week test) is still detected but it went from almost 13,000,000 to 64!!!  my ast from 131 to 34 and my alt 97 to 17!  platelets drop from 104 to 91 but I feel that will change back after Tx
we actually went on a road trip yesterday and I had to keep looking at my test all day at one point I gave it kisses...Life is GOOD!!!
I will be updating signature shortly...whoo hoo! :D :D :D :D :D
Title: Re: Harvoni Side effects
Post by: Katie on October 14, 2015, 02:06:05 pm
You are on your way and a STRONG responder.  Congratulations!!!!!

Katie
Title: Re: Harvoni Side effects
Post by: Else on October 14, 2015, 03:53:45 pm
Fantastic news, coastal!
Title: Re: Harvoni Side effects
Post by: hope2bcured on October 14, 2015, 04:15:46 pm
I am new to the forum and started taking Harvoni on October 17th.  Is anyone else taking it and experiencing any side effects?  I am getting daily headaches and fatigue when I first take the pill in the evening.  The fatigue seems to be letting up during the day.  I was experiencing nausea for the first few days but that seems to be better now.

I have 1b and my liver is f3 with a viral load of 4.7 million.  AST 75, ALT 93

Thanks, Art

Hi Art,

I just finished Harvoni 4 weeks ago. I had very minimal headaches, that didnt even require anything. I actually, had some increased energy when I first started, had a short period where some of my hair was falling out (that stopped) and then I developed some cardiac issues, so do keep an eye on your blood pressure. Another friend of mine, never had blood pressure issues and he had a stroke 3 weeks after taking the Harvoni. And he was a health nut prior, never had elevated blood pressure.  So do keep an eye. I had high blood pressure but, it was controlled with meds, but, on the Harvoni, my blood pressure sky rocketed. I ended up having to go on a heart monitor for 2 weeks, just recently finished with that, and am waiting to see cardiologist again, but, I think thats simmered down now, because I am not getting racing heart or shortness of breath anymore.

My biggest complaints were in increased brain fog, before that started my head felt like it was getting clearer. Now the brainfog is getting a little better. But, I have lots of liver discomfort and unbelievable fatigue, was never this fatigued in my life. My Dr said it can take anywhere from 6 months to a year to feel better.

We have to figure, a medicine this potent, is going to cause some changes in the body, as well as changes when the virus is gone, the livers have been compromised for so long its going to take some time to heal.

I took Harvoni for 12 weeks genotype 1a never took a treatment before and have had HCV since 1980. My 8 week blood test while on it was not detected.  And I just took my 4 week post treatment pcr yesterday, so I will soon.

What I have gleaned from my experience, is that people have different side effects, the most important thing I can suggest is drink lots and lots of water.

Hang in there, you will be fine.
Title: Re: Harvoni Side effects
Post by: beto on October 14, 2015, 08:14:05 pm
hey costal girl...rock on.  Feels great to see the numbers drop.  Way to go.

Art- the treatment is a very mixed bag.  The 1st 2 weeks are the toughest, but even then there are good days usually.  I had dizzy spells and a heavy feeling...some fast onset depression, mixed with amazing energy spurts.

Soon2bcured is right about these meds.  Dropping from high VL to zip overnight takes a powerful drug.  The discomfort, however, is not like the old meds.  Also, it is widely reported that EOT can be another challenge.  I am nearing 2 weeks EOT.  Not bad for me but, moody, and a little quick to be agitated over things small...dropping f bombs over where "ah shoot" would have sufficed.  :)
Title: Re: Harvoni Side effects
Post by: coastal girl on October 14, 2015, 09:19:08 pm
Thank you all, yes, It feels great to have numbers drop!!  I just know in my heart that I will clear this virus...then it's onto reversing liver damage which I also know in my heart and experience in holistic healing will also happen!!!!
I have been very fortunate in the side effect area also..harvoni high has been it...except day 3 I was so spacey it was frustratingly comedic!!!!  Thank goodness that only lasted a day.
I know there are many out there who are suffering and I am so sorry for your pain....On a different note I find myself very envious of the people without liver damage and catch myself pouting, thinking "its so unfair"  but it is what it is...I have much hope for the next 30 years of my life...oh, BTW I'm a 55 year old female...guess I should put that in my stats :) 
Plan for the future
1- clear virus...no worries
2 - repair liver..achievable
3- live the next 30 years grateful for everyday and love love love all..very achievable!!! 
I wish the same for the rest of you  all.. of course you younger ones get more years :):):)
Title: Re: Harvoni Side effects
Post by: beto on October 14, 2015, 11:41:52 pm
That's the attitude costal girl...

I feel the same way.  I have posted, and others have posted, cirrhosis reversal stories and studies.  I will not bore  everyone again with my hopeful rants on that subject.  The idea to "just know" is a powerful one.  We have indeed arrived at a place of hope that we never expected and there are a bunch of like minded folks at the junction to share with.  Life is good.

I understand the envy thing because it is kind of random,  However, one miracle at a time hey? :D
Title: Re: Harvoni Side effects
Post by: coastal girl on October 15, 2015, 12:29:21 am
HI Beto,
You may be interested in this link...here is the conclusion from "A Proposal From The International Liver Pathology Group"....
"We propose that use of the word cirrhosis should be discontinued and that each patient with chronic liver disease of advanced stage should be provided treatment on the basis of clinicopathologic correlation of all available findings (Figure 1). This proposal is consistent with our current understanding of the evolution of chronic liver diseases and will also remove an unnecessary psychological burden from patients. In addition, research into the pathogenesis and evolution of chronic liver diseases will be facilitated if an etiology-based perspective extends all the way to the end stage. In the past, ignorance was a good reason to lump the advanced stages of different liver diseases together; the opposite may prove to be more useful in the future."
Copyright© by the American Society for Clinical Pathology
Here is the link, interesting read   http://ajcp.ascpjournals.org/content/137/1/5.full

Happy reading :)


Title: Re: Harvoni Side effects
Post by: Lynn K on October 15, 2015, 01:09:28 am
Thanks Coastal Girl

Very interesting and hopeful information.

May those of us diagnosed with cirrhosis and cured of hep c receive a revised diagnosis of advanced stage liver disease, with features of regression.

It doesn't sound that great but would sound like good news to us.
Title: Re: Harvoni Side effects
Post by: beto on October 15, 2015, 01:16:16 pm
HI Beto,
You may be interested in this link...here is the conclusion from "A Proposal From The International Liver Pathology Group"....
"We propose that use of the word cirrhosis should be discontinued and that each patient with chronic liver disease of advanced stage should be provided treatment on the basis of clinicopathologic correlation of all available findings (Figure 1). This proposal is consistent with our current understanding of the evolution of chronic liver diseases and will also remove an unnecessary psychological burden from patients. In addition, research into the pathogenesis and evolution of chronic liver diseases will be facilitated if an etiology-based perspective extends all the way to the end stage. In the past, ignorance was a good reason to lump the advanced stages of different liver diseases together; the opposite may prove to be more useful in the future."
Copyright© by the American Society for Clinical Pathology
Here is the link, interesting read   http://ajcp.ascpjournals.org/content/137/1/5.full

Happy reading :)

Excellent find Costal Girl!!

This is a clinical interpretation of what has been nagging me since I heard the doctor say "this scan does indicate that you have "CIRRHOSIS"  that word was so powerful in that moment.  When I have admitted to lay folks that I was diagnosed with it they must all think "dead man walking".  22 years ago when diagnosed with chronic hep C (from earlier non a non b)...it was the same thing 'dead man walking' but I got pissed off and trained for a marathon and finished it at the age I was told I would be lucky to see (that was 51, I am now 59).

Yes indeed.  Not cirrhosis...but a gradient of fibrosis and no two livers are the same.  A careful assessment of the individual case and treating or supporting that case given the individual variables.  Totally makes sence.  We certainly have example of regression to hope for in our own situations.

I like our chances of improvement or at least sustaining relative healthy liver function.  All my thoughts are on "REGRESSION" .  Funny my attitude has always been...if I was given a diagnosis that said I have a 5% chance of survival and 95% not...my heart and mind will take the 5%.  here we have an amazing drug that not only gives us great odds of surviving Hep C but also encouraging possibilities of liver repair down the road.  rock on heppers!!

Title: Re: Harvoni Side effects
Post by: Murray on October 18, 2015, 01:33:40 pm
Newbie here. Diagnosed in 1990 contracted in the mid-70's. I've have refused all treatments until now.Saw the hell my friends went thru with interferon and passed.  I have moderate cirrhosis. I'm 4+ weeks in on Harvoni and getting my ass kicked. Side effects by severity:
1. Fatigue
2. Bloating super gassy.
3. Diarrhea.
4. Severe joint pain - this has only occurred a couple of times.
Plus one I haven't seen anywhere on forum
5. My lip blew up last night and eventually went down but moved to inside my cheek along the jaw line. It looks like I have a pinch of tobacco in my mouth.

Anyone heard of this one or perhaps an allergic reaction...I've been fortunate to not have any allergies so it seems unlikely.

Really hard getting thru work

2 week blood test
VL was 8-15M but is now less than 1.12M
Liver function results were 100-150 and now both numbers are about 60
So clearly working but feeling awful.
Title: Re: Harvoni Side effects
Post by: beto on October 18, 2015, 01:49:44 pm
Murray,

Some folks have gone through some pretty harry sides.  Some not at all.  There has been a lot posted over the months that you may find helpful.  I guess 1st you should talk to your doc in case there is an allergic issue.  We are all collective test mice in some ways, as the meds are so new.  Consider the fact that a virus you have had for decades that replicates hourly by the trillions, is being killed off rapidly.  Mostly the 1st 2 weeks are the hardest for the majority.  I am sure others will chime in with similar sides...hang in there.

I too avoided The old meds and opted for alternatives.  Harvoni was just too good to be true.  I am through 12 weeks and so far I was undetected.  Viral die off alone can be pretty toxic.  Good luck and welcome...you landed in the right place...you are not alone.  Peace...
Title: Re: Harvoni Side effects
Post by: BillT on October 18, 2015, 02:02:57 pm
Hi Murray and welcome to the club.I think Cal mentioned the lip thing on the last page (?) of the Cal On Viekira Pak And Ribas thread so you're not the only one.Stay the course and beat this.I know all about bad side affects because I was on the interferon treatment.I hope it gets better but you're not alone in this.Cheers
Title: Re: Harvoni Side effects
Post by: mvnwy on October 18, 2015, 02:29:50 pm
Since my doctor is clueless (I gave him a list of all my side effects during the one visit I will have with him) and seemingly uninterested I will chime in here because I literally have no knowledgeable professional to talk to about this.  I am on week nine of what, if I don't give up and quit, will be a 1
Title: Re: Harvoni Side effects
Post by: gnatcatcher on October 18, 2015, 04:42:00 pm
Newbie here. Diagnosed in 1990 contracted in the mid-70's. I've have refused all treatments until now.Saw the hell my friends went thru with interferon and passed.  I have moderate cirrhosis. I'm 4+ weeks in on Harvoni and getting my ass kicked. Side effects by severity:
1. Fatigue
2. Bloating super gassy.
3. Diarrhea.
4. Severe joint pain - this has only occurred a couple of times.
Plus one I haven't seen anywhere on forum
5. My lip blew up last night and eventually went down but moved to inside my cheek along the jaw line. It looks like I have a pinch of tobacco in my mouth.

Anyone heard of this one or perhaps an allergic reaction...I've been fortunate to not have any allergies so it seems unlikely.

2 week blood test
VL was 8-15M but is now less than 1.12M
Liver function results were 100-150 and now both numbers are about 60
So clearly working but feeling awful.

Murray, the lip swelling and its migration to the inside of your cheek could be an allergic reaction (hives), possibly to the Harvoni. It's definitely something you should report to your medical provider and/or Gilead and/or a nurse or pharmacist connected with the specialty pharmacy from which you get your Harvoni. (If the swelling gets so bad that it causes difficulty breathing, that would constitute an emergency.) Two of my family members have gotten hives from new-to-them medications. Sometimes it is possible to take something like Benadryl to get rid of the hives while continuing to take the medicine, but a medical professional must be the one to decide. You're getting good results from the Harvoni, so I hope either the hives aren't from the Harvoni or, if they are, there's a solution that will let you stay the course. Best wishes.

Gnatty
Title: Re: Harvoni Side effects
Post by: Murray on October 18, 2015, 05:58:48 pm
Thanks to everyone for the support. Swelling is almost gone. Now if I can just get work without needing a nap
Murray
Title: Re: Harvoni Side effects
Post by: Lynn K on October 18, 2015, 11:25:59 pm
Since my doctor is clueless (I gave him a list of all my side effects during the one visit I will have with him) and seemingly uninterested I will chime in here because I literally have no knowledgeable professional to talk to about this.  I am on week nine of what, if I don't give up and quit, will be a 1

Looks like your message got cut off short?

Did you mean what would happen if you do give up and quit?

Best to you
Lynn
Title: Re: Harvoni Side effects
Post by: BillT on October 19, 2015, 09:47:15 am
Don't giving up Mvnwy.Just keep your eye on the good things to come once this is done.It won't last forever.
Title: Re: Harvoni Side effects
Post by: rp616 on October 20, 2015, 09:45:26 am
Just got my 4th week blood test result. Virus count is undetectable. Hope it stays that way.
Title: Re: Harvoni Side effects
Post by: gnatcatcher on October 20, 2015, 01:10:58 pm
Congratulations, rp. As I recall, you have taken a big risk by paying for the medicine yourself, so it's extra good that you're getting the desired results. Wishing you continued success.

Gnatty
Title: Re: Harvoni Side effects
Post by: Else on October 20, 2015, 01:21:59 pm
Wow, super news rp!!!
Title: Re: Harvoni Side effects
Post by: motorhead on October 23, 2015, 08:03:16 pm
Noob here, just into 4th week on the big-H with typical side effects.

Diagnosed in '98 while still asymptomatic.  Genotype 4 with F1 fibrosis.  College roommate diagnosed the year after with same rare (in the US) genotype, which led to the conclusion that we contracted it together in the '70s from IV drug use.

Roomie had moderate fibrosis and successfully completed peg-interferon & ribavirin in '03.  Based on his success and my doc arguing that the younger you are the better you cope, I went the same route in '06.  I responded, viral count was undetectable at midpoint, but ribavirin caused hemolytic anemia so bad by the 2/3 mark that doc had to take me off the treatment and virus came back.

During treatment, got such bad headaches from the int/rib combo that doc put me on topamax - nasty stuff that did nothing for the headaches and really spaced me out, so I stopped taking it, but not before the 3-drug combo damaged my hearing.

Post-treatment (int/rib), rapid fatigue with any physical activity, and chronic migraines never went away.  Amitriptyline helped the migraines for a while, then doc switched me to nadolol which works better for me.

First few days of Harvoni had no side effects except sleepiness, then the headaches, body aches, and fatigue hit big time.  Last week it was 2 migraines/day.  Lots of good advice and experience here from those who have gone before -- kept trying all the various recommendations until I hit the one that worked for me: ice packs & tylenol at first sign of a headache.

Thanks to all of you, and best wishes!
Title: Re: Harvoni Side effects
Post by: KimInTheForest on October 23, 2015, 08:10:25 pm
Welcome motorhead! And good luck with those headaches.They hit some people on Harvoni worse than others. Be sure you are staying well hydrated. Seems to help with all sides but especially the headaches.

best,
kim
Title: Re: Harvoni Side effects
Post by: Murray on October 23, 2015, 08:49:12 pm
The hits keep coming. Today I started feeling really nauseous and having trouble eating. Harvoni? Fatigue is also pretty bad today. Anybody relate?
Title: Re: Harvoni Side effects
Post by: KimInTheForest on October 23, 2015, 09:32:19 pm
The hits keep coming. Today I started feeling really nauseous and having trouble eating. Harvoni? Fatigue is also pretty bad today. Anybody relate?

I had significant appetite suppression throughout my 12 weeks of treatment. But since I was on Harvoni plus ribavirin, I don't know which drug was responsible for that. I lost weight (when I had none to lose), and I was getting malnourished because it was so difficult for me to find things I could eat. I didn't have nausea though, just total appetite suppression.

As for fatigue, Harvoni actually had the opposite effect on me. I was one of the beneficiaries of the "Harvoni high". Not everyone seems to experience that. My fatigue set in later and was due to the anemia induced by the ribavirin.

Hang in there! The body has ways of adapting to lots of these developments. Many side effects will lessen or disappear after a few days or a week as the body adjusts to the new thing going on.

best,
kim
Title: Re: Harvoni Side effects
Post by: beto on October 24, 2015, 12:34:10 am
Murray...Motorhead...Welcome

The new crop.  You've probably  been perusing the forum.  There has been lots written...many before us and many will follow us.  Most of my own symptoms or sides were in the 1st 3 weeks or so.  The third day I sort of crashed, then rebounded and experienced the Harvoni high.  I had some dizziness or light/heavy headedness occasionally where I felt like I might fall over...but mostly not too bad.  I welcomed the sides because to me it meant the meds were working.  I have come to believe that the viral die-off and the sudden changes in my body, account for most of my reactions.  We are literally killing off billions of them little boogers overnight.  Hang in there.  When you get results on your 1st test it is life changing.  peace
Title: Re: Harvoni Side effects
Post by: Murray on October 24, 2015, 04:36:03 pm
Ok so the good news is my VL is undetected at the 4 wk blood test,
As for side effects I'm getting them. I've read here lots of you had problems week 1-3. I've had the opposite. Nothing the first couple of weeks but now starting week 6 I'm really hurting. Severe fatigue, nausea and no appetite, diarrhea, and joint pain. Barely making it thru work and even harder getting out of bed. Wondering if anyone has had this experience. 
Seeing my doctor this Thursday, he thinks I'm exaggerating.
Title: Re: Harvoni Side effects
Post by: KimInTheForest on October 24, 2015, 04:48:59 pm
Ok so the good news is my VL is undetected at the 4 wk blood test,
As for side effects I'm getting them. I've read here lots of you had problems week 1-3. I've had the opposite. Nothing the first couple of weeks but now starting week 6 I'm really hurting. Severe fatigue, nausea and no appetite, diarrhea, and joint pain. Barely making it thru work and even harder getting out of bed. Wondering if anyone has had this experience. 
Seeing my doctor this Thursday, he thinks I'm exaggerating.

Hi Murray. And congrats on your UND result at Week 4!

Re: the diarrhea - try the BRAT diet… Bananas, Rice, Applesauce, Toast. My diarrhea while on treatment cleared up pretty much immediately with the BRAT diet, and others here have recommended it too. I only had to do it for a few days. Rice and toast must be white, not whole grain, and applesauce must be from peeled apples so there is no roughage to irritate or stimulate the bowel further. 

best,
kim
Title: Re: Harvoni Side effects
Post by: redcat36 on October 26, 2015, 09:43:38 pm
Hello everyone,
I'm now in week 9 and just got results for blood tests after 8 weeks:  ALT=25, AST=25, Bilirubin=0.6, Viral Load=Undetectable.  I'm in for 4 more weeks and then final tests.  Side effects are practicably undetectable - except for chronic fatigue which I have gotten used to.  Happy days ahead.
Larry
Title: Re: Harvoni Side effects
Post by: Else on October 26, 2015, 10:04:08 pm
Congrats Larry!  You're in the home stretch.  :)
Title: Re: Harvoni Side effects
Post by: slats1056 on October 26, 2015, 10:31:28 pm
  Great News Larry, looks like You are on easy street from here on out! I for one will be ecstatic if & when the fatigue ever lets up! Good looking numbers , too. Keep it up & keep posting results.
Title: Re: Harvoni Side effects
Post by: 2rivers on October 28, 2015, 03:10:31 pm
I just received my 3-month post-treatment results. I did the 8-week Harvoni treatment, rather than the 12-week. I would have had to pay the last 4 weeks out-of-pocket, and was advised that with genotype 1B there wouldn't be much statistical advantage by doing the extra 4 weeks.

I am happy to report that after living with HCV for 45 years I am now virus free. All my liver functions are well within the normal range as well. I remember seeing a forum that was tabulating results of the 8-week treatment. Does anybody have the link so that I can post there as well? Thanks in advance...
Title: Re: Harvoni Side effects
Post by: concerned father on October 28, 2015, 03:23:59 pm
I just received my 3-month post-treatment results. I did the 8-week Harvoni treatment, rather than the 12-week. I would have had to pay the last 4 weeks out-of-pocket, and was advised that with genotype 1B there wouldn't be much statistical advantage by doing the extra 4 weeks.

I am happy to report that after living with HCV for 45 years I am now virus free. All my liver functions are well within the normal range as well. I remember seeing a forum that was tabulating results of the 8-week treatment. Does anybody have the link so that I can post there as well? Thanks in advance...

Congrats 2rivers here is the link.

http://forums.hepmag.com/index.php?topic=2665.600 >:(
Title: Re: Harvoni Side effects
Post by: Katie on October 28, 2015, 03:36:13 pm
Congratulations to you 2rivers!  Move forward and enjoy your life!!!!
Title: Re: Harvoni Side effects
Post by: Else on October 28, 2015, 06:58:00 pm
Wow, that is fantastic!!!!  Huge congratulations!
Title: Re: Harvoni Side effects
Post by: beto on October 28, 2015, 08:38:05 pm
Loving these 24 week UD's...wonderful Katie...don't leave us  :)
Title: Re: Harvoni Side effects
Post by: 2rivers on October 29, 2015, 12:57:54 am
Thanks Else, Katie and Concerned Father! For what it's worth, I never experienced any unpleasant side effects throughout treatment, other than a bit of weak headache at the start, and some minor fatigue. These were so minor that I don't even know if I can attribute them to the Harvoni.

One unpleasant thing that happened though was a loss of some vision in my left eye due to sub-occlusion of the main retinal vein (retinal bleeding). This is ongoing, even 3 months after EOT, so doubtful if it can be blamed on the medication. I don't have any of the usual underlying conditions  that cause this, such as diabetes, high blood pressure, etc. I am due to start intra-ocular injections if it hasn't improved by January. My HCV health providers said they wanted the complete diagnosis from my eye doc so they could forward it to Health Canada. Does anyone know of similar occurrences with Harvoni?
Title: Re: Harvoni Side effects
Post by: beto on October 29, 2015, 01:08:22 pm
2rivers,

Only thing I can say that might have affected you from the meds is that perhaps our blood thins a bit.  I can't be sure, however, I just had oral surgery for dental implants (should have waited longer) and I had a lot of bleeding.  My doc commented on how thin the blood appeard.  Now, I do have cirrhosis, so it is not uncommon to have clotting issues.  However, my platelet count was very good at 4 weeks into tx (when last checked) however, my hematocrit and RBC were both low.  I also noticed a drop in ferritin which is a good thing in my case because that has always been high.

Anyway, it would be worth checking out.  I am on the 4th week EOT.  Just an observation here that deserves study.  We are pioneers.  So happy that it has been an easy ride for you besides the vision issues. 
Title: Re: Harvoni Side effects
Post by: 2rivers on October 29, 2015, 01:25:44 pm
Quote
Only thing I can say that might have affected you from the meds is that perhaps our blood thins a bit.  I can't be sure, however, I just had oral surgery for dental implants (should have waited longer) and I had a lot of bleeding.  My doc commented on how thin the blood appeard.  Now, I do have cirrhosis, so it is not uncommon to have clotting issues.  However, my platelet count was very good at 4 weeks into tx (when last checked) however, my hematocrit and RBC were both low.  I also noticed a drop in ferritin which is a good thing in my case because that has always been high.
Thanks for that beto. I remember that my platelet count was concerning...just can't remember how out of whack it was. Will check on this...
Title: Re: Harvoni Side effects
Post by: Katie on October 29, 2015, 02:58:42 pm
Loving these 24 week UD's...wonderful Katie...don't leave us  :)

I'm not going anywhere Beto!  I have just cut back on my comments as I have covered everything in previous posts.  Just so you know, I am feeling better, slowly, and found the more exercise I get, outside in the fresh air, the better I feel so I have been pushing myself even when I feel like going back to bed.  So that being said,  everyone out there keep moving and don't spiral down into a weak, tired funk.  The more you do, the more you can do!

Katie
Title: Re: Harvoni Side effects
Post by: 2rivers on October 29, 2015, 05:27:41 pm
Excellent advice Katie.
Title: Re: Harvoni Side effects
Post by: Bree on October 29, 2015, 06:01:34 pm
Agree, going outside, walking the dogs, just being alive, really, really helps!
Title: Re: Harvoni Side effects
Post by: concerned father on October 30, 2015, 07:56:37 am
My daughter finished her treatment 5 days ago and she already has much more energy :)
Title: Re: Harvoni Side effects
Post by: gnatcatcher on October 30, 2015, 07:59:48 am
concerned father, I'm glad things worked out so well for your daughter. May the extra energy keep her -- and you -- busy with other things so that the remaining 11 weeks and 2 days until the SVR test fly by. -Gnatty
Title: Re: Harvoni Side effects
Post by: biminidave on October 30, 2015, 10:21:25 am
Awesome forum here!  I've had a dickens of a time finding SE info on Harvoni.  With 9 pills left in my 12 week treatment my GI continues to tell me that H doesn't have many more SE's than headache and fatigue.

I've had arthritis for a half dozen years, probably more if you ask my rheumatologist, and since week 3 I've been in the worst flare I can ever remember.  Hands, wrists, one knee and the tendons beneath it, and my left foot kill me every morning, but fade to bearable within a couple hours of taking an acetaminophen and a celebrex capsule. I drink 10-12 glasses of water a day to help with SE's.

Tiredness has been an issue throughout and I had my first headache a couple nights ago.  Unbelievable headache.

I'm 62, 1a, early cirrhosis, and viral load went from 6.3m to undetectable by week 4.  All liver functions returned to normal by then too.

I'll be real happy to finish this stuff and see how long it takes for my pain to lessen.  The SE's have been worth it when balanced against going undetectable with a normal metabolic panel.
Title: Re: Harvoni Side effects
Post by: gnatcatcher on October 30, 2015, 10:33:55 am
Welcome, biminidave, and congratulations both on the good labs and on staying the course despite all those SE's. Your GI doesn't understand that manufacturers are made to publicize only those SE's experienced by at least a certain % of study participants.

Harvoni clears pretty fast. The half life of ledipasvir is about 47 hours and of sofosbuvir is shorter than that.

Gnatty
Title: Re: Harvoni Side effects
Post by: biminidave on October 30, 2015, 12:18:10 pm
Welcome, biminidave, and congratulations both on the good labs and on staying the course despite all those SE's. Your GI doesn't understand that manufacturers are made to publicize only those SE's experienced by at least a certain % of study participants.

Harvoni clears pretty fast. The half life of ledipasvir is about 47 hours and of sofosbuvir is shorter than that.

Gnatty

Thanks Gnatcatcher.  I had no idea that Harvoni had such a short half life.  I should be seeing at least SOME relief within a week of EOT then. :D
Title: Re: Harvoni Side effects
Post by: Else on October 30, 2015, 12:38:55 pm
Hi Dave.  :)  Geez, the SE's of Harvoni are a wild card, that's for sure.  I'm past the 1/2 way point of my 12wk treatment.  A few mild "start-up" headaches in the first week then nothing but good.

Well, except for the last three days.  Major headaches that wake me up at precisely 4am.  And unlike my first week on Harvoni, water doesn't seem to wash these away.  So aspirin it is, though I've really tried to avoid anything, including supplements, during treatment.  I still don't get back to sleep, so am overtired which of course means fatigued.  What the heck???   :( 

I thought my body would be well-accustomed to Harvoni by now.  Go figure.  Oh well, I'm loving my 4wk labs and congratulations on yours!!!  So SE's on Harvoni?  Anybody's guess.  But doable.
Title: Re: Harvoni Side effects
Post by: biminidave on October 30, 2015, 12:48:14 pm
With labs like that you've got to keep at it Else.  It'd be a bummer for us to let a "little headache" mess up the progress we've both made.  Yeah, "little headache."  LOL
Title: Re: Harvoni Side effects
Post by: beto on October 30, 2015, 12:49:38 pm
Concerned Father

Congrats for your girl.  You have done her a great service by supporting her through this challenging time.  She is very lucky to have...well...a concerned father.  Best luck moving forward.

biminidave-

What gnatty said.  This medication does clear the body quickly which is one of the reasons it is stressed not to miss a day of tx.  More information will be surfacing as more folks finish SVR and more studies and observations take place.  One observation is that some have a rough time during tx and another is that many also do after completion.  This indicates that perhaps there is something else going on with SE's other than reactions to the meds themselves.  Many of us, left only with our powers of observation and speculations, feel that the process of healing and rapidly going from 40 years of a high viral load to zero in a few weeks, might just be rebooting our immune systems and our hemostasis so to speak.  Regardless of how much we and our immunity wants rid of it, it was part of us for a long time.  If ever there was a miracle drug...this is it.

Hang in there...I just considered the sides healing crisis...mine were not so bad though.
Title: Re: Harvoni Side effects
Post by: biminidave on October 30, 2015, 01:00:34 pm
I didn't consider a healing crisis Beto, but with carrying the disease around for 40ish years myself and becoming undetectable within a month it could very well be what's happening to many of us.

Cool to think of it in that way.
Title: Re: Harvoni Side effects
Post by: BillT on October 30, 2015, 06:49:00 pm
Beto,
     I have to agree with Dave.I never thought about it that way either.These drugs are so new it's hard to say what is going on with them and our bodies.There's still a lot of information that needs to be gathered but in time it will be.I said on one of my other posts that I asked my doctor if they would do another FibroScan 12weeks EOT and he said they had been discussing that very thing.Nobody has much information on what happens post-treatment in the long run yet.Cheers
Title: Re: Harvoni Side effects
Post by: Param on November 01, 2015, 09:16:40 pm
Hi 2rivers,

I agree that Harvoni seems to affect the eyes also.  I am only two weeks in and I can say my vision seems to fluctuate quite a bit.

My daughter is an optometrist and I mentioned to her your retinal bleeding. She said it is surprising since it is Interferon that can definitely cause retinal bleeding. But you are right, Harvoni does not list retinal bleeding to occur.

Just as you said, when retinal bleeding is found, the red flags are diabetes, high blood pressure, cardiovascular and atherosclerosis. My daughter explained blood work needs to get done to also see your platelet levels and full blood work to rule out other health conditions. She said depending on your vision, usually no treatment is done because the bleeding can self resolve in a few months.  But if it is starting to affect your vision or if there is a lot of bleeding, then yes, intraocular injections or laser is done in the eye.

I wouldn't be surprised if this was due to Harvoni even though there is no interferon now....I feel we are all experiencing new symptoms that are "unheard of"

Good luck!
Title: Re: Harvoni Side effects
Post by: Else on November 01, 2015, 11:34:22 pm
And now for a brief commercial interruption...

https://www.youtube.com/watch?v=ddN6WHBmBmI

 :o

 ;)
Title: Re: Harvoni Side effects
Post by: byebyeC on November 02, 2015, 12:54:01 pm
Else,

A most excellent and let's just say it, what a woody sort of interruption! :D :) ;) :D ;D 8) ??? ::) ;D ;D ;D ;D ;D
Title: Re: Harvoni Side effects
Post by: 2rivers on November 07, 2015, 01:46:48 pm
Quote
I agree that Harvoni seems to affect the eyes also.  I am only two weeks in and I can say my vision seems to fluctuate quite a bit.

My daughter is an optometrist and I mentioned to her your retinal bleeding. She said it is surprising since it is Interferon that can definitely cause retinal bleeding. But you are right, Harvoni does not list retinal bleeding to occur.

Just as you said, when retinal bleeding is found, the red flags are diabetes, high blood pressure, cardiovascular and atherosclerosis. My daughter explained blood work needs to get done to also see your platelet levels and full blood work to rule out other health conditions. She said depending on your vision, usually no treatment is done because the bleeding can self resolve in a few months.  But if it is starting to affect your vision or if there is a lot of bleeding, then yes, intraocular injections or laser is done in the eye.

I wouldn't be surprised if this was due to Harvoni even though there is no interferon now....I feel we are all experiencing new symptoms that are "unheard of"

Good luck!

Thank you for your reply Param. Yes, I have had all the recommended tests and they all turned out negative. Interesting that you mentioned platelet scores -if I recall, mine were quite concerning - can't remember if they were low or high, and I'm not sure if that is resolved now or not. I will ask my doctor about it.

I am Canadian, but am now in the US for 6 months. I have seen an ophthalmologist here and he thought that I should probably start the intra ocular injections soon. He has referred me to a retinal specialist, who I see on the 17th. I would have to pay out-of-pocket, but would like a second opinion anyway. The cost of the injections are minimal compared to the cost of Harvoni, so I will probably proceed.
Title: Re: Harvoni Side effects
Post by: 2rivers on November 07, 2015, 01:50:55 pm
Param - Forgot to mention - hope your vision clears up on it's own and that your treatment, as it pertains to Hep C, is as successful as mine was. Hang in there!
Title: Re: Harvoni Side effects
Post by: Lynn K on November 07, 2015, 11:32:48 pm
Hi 2rivers

Do you have cirrhosis? Many of us with cirrhosis have low platelet counts. Min normal at the lab I use is 150. Mine have been around 80 to 90 for several years I have seen folks with as low as 50 or lower I think the want to do a transfusion if you ge as low as 30.

By I as diagnosed with cirrhosis 8 years ago and still hanging in there

Good luck
Lynn
Title: Re: Harvoni Side effects
Post by: Scoutdoy on November 08, 2015, 12:26:12 am
Lynn, since your treatment have you noticed any improvement in your day to day health? I read you are f4 and the treatment should help with further damage, but do you feel any relief from some of the side effects from when you had the virus. I have noticed my fatigue has improved and my joint pain has definitely improved. It's not "gone" but I feel that it has improved.


Scout
Title: Re: Harvoni Side effects
Post by: Lynn K on November 08, 2015, 12:36:01 am
I never had any symptoms from hep c. I didn't have really any side effects from treatment with Harvoni either.

The only symptoms I have had are from cirrhosis and all those are primarily hidden in blood test results and ultrasound tests. The only visible symptoms of cirrhosis I have are lower leg swelling and thousands of little red dots on my arms and especially my stomach called petechia. I have felt tired and continue to feel tired but I assume that is a symptom of my liver cirrhosis 

If I didn't have a low platelet count, an ultrasound that shows cirrhosis and the edema I would not know I had anything going on with my health. Other than being 57 with a sedentary job and needing to lose about 20 lbs
Title: Re: Harvoni Side effects
Post by: Mugwump on November 08, 2015, 05:34:11 am
 
158 150-400 10*9/L

158 is my latest level and it was higher during treatment. I am still slightly over count on RBC at 5.49

My cirrhosis is still keeping my platelets down but at least it is not critically low. I did not do the combo of Ribaviron and only considered this option if I did not respond strongly to Harvoni. So I am still at risk for iron overload.

Before Harvoni I had problems with hemorrhoids with severe rectal bleeding for years and had to use prep H during harvoni treatment to get the problem under control.

Fortunately because my platelets did not drop the problems were not hard to deal with.

I know talking about the human plumbing is a bit of a PITA to some. But my father was a plumber so it is second nature for me...LOL

A word about weakened blood vessels in the rectum:

It is very hard to quantify a rectal bleed and most people will be shocked when a few CCs of blood show up in the toilet. If you have weakened blood vessels in the rectum it is very important to not panic. I almost went into emerge to deal with the problem and was scared stiff but quickly realized that if the bleeding did not stop within a short period of time then and only then a trip to emerge is necessary.

This is why it is important during HCV treatment to communicate with the professionals! Don't ignore the issue but educate yourself because it the only way to avoid the fears and worry that necessarily can happen to those of us who have advanced liver deterioration.

I have not had issues with this problem since the end of treatment and now that HCV is no longer ravaging my liver it is becoming much easier to deal with my ongoing battle with having weakened blood vessels down south!

Here is hoping that our aging blood vessels recover to some extent now that our livers and spleen can do the job that they were being prevented from doing by HCV.

Before Harvoni TX I purchased some pants that would make adult diapers easier to wear. I am wearing them as I write this post.

It looks like I will not need to go for the diaper option because of Harvoni thank my lucky stars! In 2013 I was preparing for my demise and was prepared for the end stage problems that cirrhosis brings.

The deterioration of my eye sight, the temporary problems with blood pressure and all the other issues that I am experiencing I can attribute to the damage that HCV has done. Harvoni is a shock to the system but the shock seems to be that I am actually going to live longer.

Cheers
Eric
Title: Re: Harvoni Side effects
Post by: 2rivers on November 08, 2015, 12:37:08 pm
Quote
Do you have cirrhosis? Many of us with cirrhosis have low platelet counts. Min normal at the lab I use is 150. Mine have been around 80 to 90 for several years I have seen folks with as low as 50 or lower I think the want to do a transfusion if you ge as low as 30.

By I as diagnosed with cirrhosis 8 years ago and still hanging in there

Good luck
Lynn

Nope, no cirrhosis. F2 - F3 fibroscore. Will your liver start to heal itself now that you're Hep C free? I have read that the fibrosis will slowly heal now that the virus is gone.
Title: Re: Harvoni Side effects
Post by: Lynn K on November 08, 2015, 02:15:54 pm
Well I have read about a 50% chance my liver may improve and that would be over many years. I have more than some fibrosis (aka scaring) I have advanced fibrosis / cirrhosis so my liver is fairly messed up with lots of scar tissue.

But at least my liver won't get an worse as long as I don't get HCC  I am compensated and fairly stable so I should be fine going forwards. If I had not cured hep c I would be back to waiting to decompensate and be needing a transplant or die waiting for one. From what I have seen about 16,000 people are waiting for a liver transplant and about 6000 transplants are performed any given year.

So the grim reaper has wandered off from me and is no longer right behind my back biding his time.

Glad you don't have cirrhosis. I would find out more about those platelets

Good luck
Lynn
Title: Re: Harvoni Side effects
Post by: 2rivers on November 08, 2015, 07:45:40 pm
Thanks Lynn, and good luck to you too! Forgot to mention, nearly 4 months post-tx I have almost no joint pain. I can play tennis nearly every day now without worrying about it. At my age (65) that's something I can really be thankful for.
Title: Re: Harvoni Side effects
Post by: KrabbyKay on November 24, 2015, 04:16:46 pm
 Well, I just got thru crying, I mean the boo-hooing, sobbing, soaking wet, snot going all over the place-type crying...Thank the good Lord I found you guys! I am brand new at this. I've never joined any kind of forum, group, chat, or anything before. But I really need you guys now.  Just a little background...I've been on Chemo before, infusions, surgeries, all kinds of hell.  but this....  I've been on Harvoni for a whole whopping five days now, and I'm here to say it's one of the worst 'treatments' I have ever been thru. I am soooo sick at my stomach, can't keep anything down (call it the Harvoni diet), legs cramps and pain. I know there's no such thing as a pain meter, but if there was, mine would be pegging in the red right about now in my legs, but I already had RLS from the get.  Not only physical pain but...oh God the guilt! All kinds of guilt....can't take care of my husband, nor the cats, let alone the house, the yard, extra stuff like social stuff, Christmas décor, gifts and cards, etc. FIVE DAYS and this is real fun already.  Cant wait till a month from now.  I've read that some of you get better, some get worse...I guess I'll have to hide and wait to see how it's gonna do me.  I also have worries and stress about going out of town for Christmas. Like I said, thank God for you guys that I can spill my guts to you and you understand. 
Title: Re: Harvoni Side effects
Post by: gnatcatcher on November 24, 2015, 04:37:34 pm
Welcome, KrabbyKay. Yes, you can come to us for sympathy, but it's your doctor who knows if it's possible to prescribe some relief for your side effects. As for the guilt, I hope your husband is the understanding sort who will be happy to have a very scaled-down holiday season so that you have as little stress, and therefore pain, as possible.

Gnatty
Title: Re: Harvoni Side effects
Post by: KrabbyKay on November 24, 2015, 06:06:16 pm
Thank you Gnatty. and no he's not, he's mad that he is not being taken care of...I even got threatened with the big 'D' word two weeks ago when I went thru an epidural for my lower back.  Life goes on. In fact...thank all of you, but I pre-apologize for things said in the future because I'm tired of crying about it, now I just want to be 'sarcastic'....but hopefully, that will turn into 'funny'. You betcha!
Title: Re: Harvoni Side effects
Post by: Katie on November 24, 2015, 06:25:28 pm
Sorry you are feeling so rotten Kay.  Your side effects seem much worse than 90% of us so I would let your doctor know ASPA.

Sorry, I can't respond to your husband's spoiled brat attitude as I haven't much tolerance for a grown man deciding he needs to be taken care of when his partner is suffering.  I don't know how old your children are but if they are grown, just cancel Christmas if you have to.  If they are young, that really isn't an option but maybe just stay home, keep it simple and have a family Christmas.  Those are usually the best and is more what Christmas was meant to be.  No one would want you to travel if you are sick and not feeling good.  Home is where you need to be.

Those with strong negative side effects from the treatment usually seemed to last just a week or so.  Maybe that will be your case.  You may always experience fatigue some muscle or joint issues but they should get better.  Be sure you drink a minimum of 8 glasses of water or more a day and rest as you need to.  The flushing with water has helped MANY with their side effects and don't self medicate yourself as you may be doing harm so check with your doctor even with over the counter remedies.

That is about all I can suggest.  I do know forcing some mild exercise has helped me and others.  I would literally have to make myself get outside and walk around the yard if it was even for only 10 minutes.  The more you do the more you can do and it keeps your muscle tone and retains your flexibility and is good for depression.

Take care and I am sending you {{{HUGS}}} and healing light!

Katie
Title: Re: Harvoni Side effects
Post by: beto on November 24, 2015, 08:35:09 pm
Hey Krabby Kay,

The worst is behind you.  There have been a few folks (and I am sure they will chime in) who had some pretty bad sides.  Sounds like you have a lot going on emotionally, physically, historically etc.  Yes lots of water and just give yourself a break through the worst of this.  I am sure that relief is on the way.  Is your husband ill?  That why he is dependant on you?  listen, this is your time to heal and you are getting rid of this virus once and for all.  I believe that sometimes we can go through a bit of a "healing crisis".  Not everyone is comfortable with that idea, I know.  It would be helpful if you would post your stats and numbers, to give us all an idea.  I will not speculate on the family drama because I know zero details.  However, besides this forum, please find someone or, some group that can support you in your day to day struggles.  And go ahead and cry it out.  In a week you will be posting on how much better you are doing.  Hang in there and use this forum regularly.  Peace
Title: Re: Harvoni Side effects
Post by: sugarfree on November 24, 2015, 10:45:45 pm
Hi Art, congrats on even getting the Harvoni, I can't add much to everyone's advice except I took my pill every AM at 9am.  I slept almost all day and all night for 12 weeks.  I drank gallons of water hoping to just flush everything out of my system . i finished meds in April.  The good news is October 16 I was pronounced Cured!!!  Hang in there , think positive and listen to everyone's advise but pay attention to what your body can and cannot do and just roll through the the treatment.  God bless
Title: Re: Harvoni Side effects
Post by: Scoutdoy on November 25, 2015, 01:17:52 pm
Kay, just from personal experience with the hubby issues, I went through quite the time with him not understanding the daily pain of having this disease. There is just no way to express the sadness that I went through with him not understanding that some days I struggled with joint issues so bad I couldn't even pour a cup of coffee without wanting to cry. He didn't understand that I was soooo fatigued I would just fall over in bed when I got home from work. He did absolutely nothing to help me physically or emotionally. Although I am 49 I still have a 7 yr old at home (yes, he was a surprise baby) I finally had enough of his non caring non understanding attitude. NO ONE I repeat NO ONE  can understand what it is like to live with this disease unless they have it ...that is why this forum was so detrimental for me ....I spoke with people that knew and understood what I was going through .that really understood what I was going through.. I finally just said fuck it get out ...the stress he put on me every day was criminal. I felt so alone even though I was married. Best decision I ever made. Got Harvoni, took the meds, and I felt great! I grabbed the world by the balls and haven't looked back since. After the first week I slept better than I had in 10 years..my joints quit hurting...the fatigue was gone....and I have been undetected in every test so far and I started at 13.9 million. My advice:: get plenty of sleep and stay hydrated. Make a plan and stick with it. Use this forum, I talked with a group of people throughout the whole treatment. They really helped me emotionally if I was feeling down, and some days it was outright funny! Like how some of us lost our pills, the dog licked one (and she still took it) etc....Get your life back and enjoy the ride! Good Luck Kay, we are all here for you, and your gonna beat this


Scout
Title: Re: Harvoni Side effects
Post by: Bree on November 25, 2015, 01:39:58 pm
Scout, you are a living example of someone who re-claimed their life! Way to go!!!
I did that with my ex 20 years ago.  We have had some hilarious dialogues with our group on this forum... many days I laughed out loud!  So much fun humor... I will cherish the experience here forever.  And, when to going gets tough, we are there with empathy and compassion.

Kay, no matter what, put yourself first, to heck with everything else.  I'm feeling like things will get better for you... we all wish you well!
Title: Re: Harvoni Side effects
Post by: beto on November 25, 2015, 03:34:39 pm
Atta girl scout!!!
Title: Re: Harvoni Side effects
Post by: BillT on November 25, 2015, 04:00:49 pm
I think this is a excellent time to listen to that little voice in my head saying..."Shut up Dude,your trying to get yourself better,not get yourself killed". 8)
Title: Re: Harvoni Side effects
Post by: Scoutdoy on November 25, 2015, 05:23:49 pm
Good one Bill...LOL


Scout
Title: Re: Harvoni Side effects
Post by: beto on November 25, 2015, 07:42:37 pm
We should start a major "venting" thread.  Scout...get on that.   :) I had riba rage today and I am 7 weeks EOT and never had riba.
Title: Re: Harvoni Side effects
Post by: KC on November 26, 2015, 09:59:26 am
Well, I just got thru crying, I mean the boo-hooing, sobbing, soaking wet, snot going all over the place-type crying...Thank the good Lord I found you guys! I am brand new at this. I've never joined any kind of forum, group, chat, or anything before. But I really need you guys now.  Just a little background...I've been on Chemo before, infusions, surgeries, all kinds of hell.  but this....  I've been on Harvoni for a whole whopping five days now, and I'm here to say it's one of the worst 'treatments' I have ever been thru. I am soooo sick at my stomach, can't keep anything down (call it the Harvoni diet), legs cramps and pain. I know there's no such thing as a pain meter, but if there was, mine would be pegging in the red right about now in my legs, but I already had RLS from the get.  Not only physical pain but...oh God the guilt! All kinds of guilt....can't take care of my husband, nor the cats, let alone the house, the yard, extra stuff like social stuff, Christmas décor, gifts and cards, etc. FIVE DAYS and this is real fun already.  Cant wait till a month from now.  I've read that some of you get better, some get worse...I guess I'll have to hide and wait to see how it's gonna do me.  I also have worries and stress about going out of town for Christmas. Like I said, thank God for you guys that I can spill my guts to you and you understand.
Title: Re: Harvoni Side effects
Post by: KC on November 26, 2015, 10:04:18 am
Welcome to the group KrabbyKay. You will find this forum full of good information and a great deal of support. I just want to let you know to give it time, all your symptoms may eventually go away. I am 6 months out of treatment, waiting form my latest labs to come in. I just wanted you to know that I sailed through my 12 week TX but had about 10 days of horrible symptoms. The rest of the time I felt like a million bucks. So don't give up, it could change. I wish you well and hope the journey gets better for you! KC
Title: Re: Harvoni Side effects
Post by: gnatcatcher on December 04, 2015, 12:48:29 pm
REAL-WORLD HARVONI SIDE EFFECT DATA
The www.natap.org site has a new report: "AASLD: (HCV-TARGET) - Treatment Outcomes With 8, 12 and 24 Week Regimens of Ledipasvir/Sofosbuvir for the Treatment of Hepatitis C Infection: Analysis of a Multicenter Prospective, Observational Study - (12/03/15)" Unfortunately, there's no direct link, so you have to find and click on that title in the "Current Hepatitis C and B Articles" column. Lots of good info, including the following percentages of real-world Adverse Events (SXs):
Fatigue 22%
Headache 21%
Nausea 8%
Diarrhea 6%
Insomnia 6%
Flu-like illness 5%
Dyspnea 3% (plus 0.4% for exertional dyspnea)
Dizziness 3%
Cough 3%
Rash 2%
Itching 2%
Decreased appetite 2%
Anemia 1%
Irritability 1%

There's a separate table of Significant Adverse Events, with 91 out of 2005 people experiencing something significant. Ten of the 2005 died, but three of those ten (metastatic breast cancer, traffic accident, and narcotic overdose) seem unrelated to Harvoni, and I don't know how one figures whether Harvoni can be implicated in the others, like the 2 "Death NOS (not otherwise specified)."
Title: Re: Harvoni Side effects
Post by: beto on December 04, 2015, 02:41:22 pm
Gnatty just checked the site out, very interesting.  Good news for those folks adding Riba.  Appears to close the SVR gap if with harvoni 12 weeks.  So the extra issues for you riba dudes, may pay off.
Title: Re: Harvoni Side effects
Post by: Bree on December 04, 2015, 03:09:58 pm
Gnatty just checked the site out, very interesting.  Good news for those folks adding Riba.  Appears to close the SVR gap if with harvoni 12 weeks.  So the extra issues for you riba dudes, may pay off.

Haven't read the info but that freaks me out.... I went through a big thing with my doctor over adding riba, which he didn't want to do due my extreme difficulty with it during first treatment and my rapid UND from very high viral load... and I worried a lot about it.  I had seen that those on the forums that had riba were seeming to all be SVR.  I'm just going with Harvoni alone has done it for me!!!  I want to be informed but sometimes it harms my psyche to read this stuff.
Title: Re: Harvoni Side effects
Post by: beto on December 04, 2015, 04:58:39 pm
Bree,

We are like treatment twins and we are both gonna do the 12 at the same time time....don't forget we started the 6 week EOT club.  :).  We will be just fine.  Riba schmiba.  My actual 12 week is Dec 26 (day after xmas).  I'm thinking of getting the labs done on the 23rd.
Title: Re: Harvoni Side effects
Post by: Bree on December 05, 2015, 12:59:24 am
Bree,

We are like treatment twins and we are both gonna do the 12 at the same time time....don't forget we started the 6 week EOT club.  :).  We will be just fine.  Riba schmiba.  My actual 12 week is Dec 26 (day after xmas).  I'm thinking of getting the labs done on the 23rd.

Thanks Beto!  It really did help me emotionally to have the 6 week test.  I'm glad you and I are the captains of the 6 week club!  I felt like I could relax a bit.  My 12 weeks is Dec. 21 but I was going to have it on Dec. 17 (11.5 weeks post) to get results by Christmas.  I can't think of a better present.  I didn't even tell one of my adult kids I did this treatment because they had watched me suffer and relapse on the previous one.  I wanted to tell him on Christmas. But, today, my girlfriend said why not just do it on the actual date that is 12 weeks.  So I guess I will do that on Dec. 21.  I understand why you are thinking of having your test on Dec. 23.  And you also have the benefit of the awesome fibroscan results.

 I'll have the LFT back before Christmas and that's pretty indicative of the direction toward SVR I think.   And, I'll have results by New Year's and that's a good thing!  Honestly I don't think a few days matters at all in the results... I'm just being weird.  Amazing how much energy we put into planning out these blood test!!!  Here's to SVR, I'm claiming it and I've already told people I'm cured.... and you too.  And, Slats, and Drummerman, Scoutdoy and the rest of the crew....  Believing all the way.....!!!
Title: Re: Harvoni Side effects
Post by: Philadelphia on December 05, 2015, 01:43:14 am
I did 2 weeks post and it was indicative of a cure too. And remember, I riba reduced from week 2 all the way through to week 24. That's a lot of ribavirin  I didn't take!
Title: Re: Harvoni Side effects
Post by: jakas on December 16, 2015, 03:49:15 pm
For me till day 6 its been dull headache, some body and liver pain. The BP has been up and down. Hungry all the time :P
I go to work daily but tired.
Title: Re: Harvoni Side effects
Post by: Anh on December 16, 2015, 10:48:03 pm
Hello everyone, I wanted to contribute to this forum on behalf of my father who is currently on Harvoni.  I feel that because this drug is so new, sharing is caring.  ANY information is good information.  My father started Harvoni October 8th, December 30th he will be finished with treatment.  His side effects in the very beginning were insomnia, fever and headaches.  The headaches got out of control where he had to visit the ER.  They did some scans and he was good to go home.  Close to the 6th week the headaches subsided and all the other side-effects were tolerable and not as bad.  What became concerning was the joint pain and muscle aches.    My father has a history of gout attacks on his big toe.  He was on Colcrys and Allopurinol... but because of the interaction of Colcrys with Harvoni he decided to stop the Colcrys while on treatment.  The allopurinol he stopped to due to the risk of any unmentioned studies and interaction.  So back to the muscle/joint aches and pain.  At first it was tolerable but afterwards kept getting worst and worst.  He had to go to his rheumatologist and get steroid shots and medrol dose pack.  These helped only a little, his pain became worst as the days went on.  I forgot to mention the pain is located in his right elbow... different from his previous history of gout attacks in his toes.  So... a week ago the pain got so worst that he had to schedule an appointment with his rheumatologist at 8AM... but the night before he was in horrible pain.. where he couldn't sleep and was up all night.  He was on the ground and even cried.  His primary care gave him Nroco 5/325 but it did not do anything to help with the pain.  He got up early and waited for me in the car while it was still early in the morning.  We went to his rheumatologist who took a look at it and went on with his gibberish... oh there's not much documentation on Harvoni causing gout and arthritis pain etc etc.  He saw my dad had a temperature of 100.3 and referred my dad down to the ER.  The general medicine doctor gave him morphine drip but that did not help with the pain... then she gave dilaudid and that helped control it a tad.  Then toradol an anti inflammatory.  Both Toradol and Dilaudid helped with the pain a lot.  They said that they are afraid it was infected so they got his blood and also suggested they needed to get the fluid from his elbow to see if it was infected.  Normal protocol, they got cultures and let it incubate for 2 days and while he was in hospital had him on the normal empiric treatment antibiotics, Ceftriaxone and Vancomycin.  Culture came back negative he went home with Naproxen and Prednisone.... these helped a lot with controlling the swelling and the pain.  But whenever it's close to his next dose he could feel the pain and warmth.  He is down to his last dose of naproxen and his prenisone taper is down to 3 days left.  I am not sure if any one has experienced this but I really hope once his harvoni treatment is over that he is clear from this evil virus and also the side-effects that came alone with it.  I read a member name Kim mention very similar side-effects but I see that she does not post anymore.  If you are reading this Kim please let us know how you are doing.  Thank you all and I wish you all the best of luck on your treatment.  No one deserves to go through this.
Title: Re: Harvoni Side effects
Post by: audreywald on December 19, 2015, 05:16:27 pm
It's been awhile since I've been on here. I an 6 months post treatment, and guess what?

MY 6 MONTH LABS WERE 0 DETECTABLE.

I HAVE BEATEN THE DRAGON.

I NEVER THOUGHT THERE WOULD BE A CURE I COULD TOLERATE,  BTW, IF THERE ARE SOME OF YOU DTILL SUFFERING POST TREATMENT, DON'T WORRY. I HAVE NO SIDES LEFT BUT IT TOOK A FEW MONTHS. YOU WILL ALL FEEL BETTER!
Title: Re: Harvoni Side effects
Post by: KC on December 19, 2015, 06:04:27 pm
Congrats!!!! I am with you on everything. My 6 month labs came back clear as well. I had many post TX symptoms up until this past month, I am feeling wonderful and looking forward to a new year without the dragon. Merry Christmas!!!!!
Title: Re: Harvoni Side effects
Post by: KimInTheForest on December 19, 2015, 06:06:29 pm
Congrats to both of you, KC & Audrey, on your SVR24! Makes for a wonderful holiday!

kim
Title: Re: Harvoni Side effects
Post by: Bree on December 19, 2015, 07:01:35 pm
Congrats KC and Audrey!!! 8)
Title: Re: Harvoni Side effects
Post by: Katie on December 19, 2015, 07:36:03 pm
Here is a Happy Dance for both of you!!!!  Have a wonderful holidy season and enjoy your new life, Dargon free!   :) ;) :D ;D :-*

Katie
Title: Re: Harvoni Side effects
Post by: KC on December 19, 2015, 07:48:52 pm
Thanks!!!!  Hope all is well with you Katie. I haven't been on here much.  8)
Title: Re: Harvoni Side effects
Post by: allsimplicity on December 21, 2015, 03:28:55 pm
Hi I am new to this forum, I started harvoni treatment three weeks ago. something really strange is going on. the best way to describe this is like a latic acid build up in my upper legs and hips this is so painful. it takes all i have to stand up and even then i need to hold on to something. I have called my doctor and im waiting for a call back. Is anyone out there feeling or having these symptoms?
Title: Re: Harvoni Side effects
Post by: Katie on December 21, 2015, 04:14:58 pm
Hi allsimplicity...that sounds really uncomfortable.  Are you retaining water?  I would massage the legs and elevate whenever possible and when you can, keep moving.  If you have some leg stretches you like I would try that too as you don't want them to get knotted up.

I don't recall anyone describing that type of symptom but could have missed it.  Many complain about joint pain.

Hope you get in to see your doctor soon.  If you have a good acupuncturist they can relieve lots of tension so it depends on what is causing this.

Welcome to the forum.  It is a great resource with lots of folks who will give you support.

Katie
Title: Re: Harvoni Side effects
Post by: allsimplicity on December 21, 2015, 04:40:08 pm
 Thanks katie, ill keep you posted, i have been moving and it does dissipate a little today is bad and was thinking i should stay off my legs. but i think you are right about them notting up and it would make it even harder to move. boy this sucks but if I'm cured then it is worth it.
Title: Re: Harvoni Side effects
Post by: gsdmoonshadow on December 23, 2015, 03:01:14 am
Day 12 on Harvoni with only one side effect. It's harder to sleep at night. I take the pill in the morning. I look forward to my blood work in early January. I had over 5.6 million for a viral load. I have read that Harvoni has been known to cut this in half after just one week. I sure hope it works this great for me! I take Benedryl at night to help me fall asleep. My doctor is fully informed about this. Getting approved for Harvoni is the best Christmas present ever for me!! A chance at life !!
Title: Re: Harvoni Side effects
Post by: jakas on December 23, 2015, 03:19:22 am
I would love it everybody updated their signatures so we dont need to keep asking questions like genotype........
Title: Re: Harvoni Side effects
Post by: beto on December 23, 2015, 11:05:17 am
Day 12 on Harvoni with only one side effect. It's harder to sleep at night. I take the pill in the morning. I look forward to my blood work in early January. I had over 5.6 million for a viral load. I have read that Harvoni has been known to cut this in half after just one week. I sure hope it works this great for me! I take Benedryl at night to help me fall asleep. My doctor is fully informed about this. Getting approved for Harvoni is the best Christmas present ever for me!! A chance at life !!

gsdmoonshadow,

You got this.  There have been posts indicating a huge drop in 3 days with this drug.  The obliteration is rapid.  Very happy for you receiving the meds...truly a wonderful blessing.  Now strap in for a fantastic ride.  You have instant friends here that totally understand every aspect of what you have been through.  It is wonderful to read posts of folks that are completely virus free after decades of tx failures, stigma and a laundry list of freak symptoms.  Peace, welcome and happy new year.
Title: Re: Harvoni Side effects
Post by: tashagr on December 23, 2015, 06:47:00 pm
Guys heaviness and mild cramping?or pain? not sure how to call it, not exactly pain more like heaviness and very mild cramping in the liver area is anybody has this effect? 8 days on Harvoni, no other side effects (if this one is one).
Title: Re: Harvoni Side effects
Post by: Bree on December 23, 2015, 10:31:17 pm
I had major liver "jabs" the first week or so... I imagined Harvoni was attacking the HCV out of their home!
Title: Re: Harvoni Side effects
Post by: Scoutdoy on December 24, 2015, 12:30:14 am
All simplicity...if your drinking enough water maybe try to keep track of how much you are peeing...so that you can report what is happening to your doctor and also are you taking any herbs or vitamins? They can effect Harvoni also


Scout
Title: Re: Harvoni Side effects
Post by: jakas on December 24, 2015, 12:42:48 am
Guys heaviness and mild cramping?or pain? not sure how to call it, not exactly pain more like heaviness and very mild cramping in the liver area is anybody has this effect? 8 days on Harvoni, no other side effects (if this one is one).
I have had this for a year now and seems a bit better after 2 weeks on Harvoni. Will see how it goes in the next weeks
Title: Re: Harvoni Side effects
Post by: tashagr on December 24, 2015, 08:01:53 am
Thank you guys, I do drink water but not too much maybe like 6-7 glasses a day and actually I peening a lot. I always have frequent urination. Maybe thats my problem, now you imagine that... No herbs, no vitamins for me.
Title: Re: Harvoni Side effects
Post by: Else on December 24, 2015, 11:12:43 am
I had major liver "jabs" the first week or so... I imagined Harvoni was attacking the HCV out of their home!

Me too.  As I recall, it didn't go past the first week or so.
Title: Re: Harvoni Side effects
Post by: Woodstock1950 on December 28, 2015, 02:04:42 am
I am new to the site , so trying to learn how to use it, I am just getting ready to start
Treatment tomorrow & nervous about any side effects . Liver Biopsy done 2 years ago,
So please forgive my awkwardness until I am a bit familiar . Thanks for all the information, as I am sure this will definitely help me through this time
Title: Re: Harvoni Side effects
Post by: KimInTheForest on December 28, 2015, 02:53:33 am
I am new to the site , so trying to learn how to use it, I am just getting ready to start
Treatment tomorrow & nervous about any side effects . Liver Biopsy done 2 years ago,
So please forgive my awkwardness until I am a bit familiar . Thanks for all the information, as I am sure this will definitely help me through this time

Welcome to the forums Woodstock. That's great that you are starting treatment. It's natural to worry about side effects. But try not to prejudge how the drugs may affect you, apart from the fact that you will almost certainly be cured! Many people have minimal side effects.

Drink plenty of water. Feel free to ask any question here. And good luck! :)

kim
Title: Re: Harvoni Side effects
Post by: Else on December 28, 2015, 11:35:17 am
Hi Woodstock,

Welcome!  I think you'll be happily surprised with treatment.  I finished 12 weeks with very little trouble.  As Kim said, don't forget to drink lots of water.  That will help with any headaches you may (or may not!) get.  Congratulations on obtaining treatment!
Title: Re: Harvoni Side effects
Post by: pansy on January 01, 2016, 11:05:33 pm
I am new here.
Going to start Harvoni in March.
Diagnosed 1b in 2002, but after another recent retest, 1a.
Have been monitored, but no treatment previously, no biopsy, sonogram, showed fatty liver...
This might have resulted from prednisone use.
On a taper of prednisone, (down to 1mg from a start of 60mg a day) for ITP
LFT are 50's & 60's, no fibrosis.
I am excited ( I cried when this drug became available where I am.)
to have the end of this disease in my grasp.
If all goes as planned, will start pills March 1st.

I have some anxiety about side effects.
Prednisone was god-awful, but it worked.
For now, I am reading others' accounts.
Thank you for support!

Title: Re: Harvoni Side effects
Post by: Bree on January 01, 2016, 11:10:56 pm
Welcome to the forum Pansy!  I had very few side effects on Harvoni and even felt great much of the time.  (They call it the Harvoni High).  Expect the best... you might be surprised how easy it is!  And one thing's for sure... it is effective!

I am 12 week post treatment and no virus!  I'm calling it cured!
Title: Re: Harvoni Side effects
Post by: Scoutdoy on January 01, 2016, 11:22:11 pm
Hi Pansy, you will do fine and you came to a good place for information and support. I had little to no side effects also and experienced the Harvoni high...I had more energy than I had in the last 15 years. Stay on the forum and congrats on starting the medication to get cured

Scout
Title: Re: Harvoni Side effects
Post by: pansy on January 01, 2016, 11:29:58 pm
Congrats, and thank you for your reply, Bree, and Scoutdoy!

That is great news, I hope to be saying something equally positive, once I get started!

Title: Re: Harvoni Side effects
Post by: Else on January 02, 2016, 12:06:45 am
Welcome Pansy and congratulations on getting the medication!  My experience mirrored Bree's.  I'm undetected at the end of a 12 wk treatment and expect to be at the 12 wk post treatment mark.

Harvoni?  It made me feel better immediately!  Amazing medication.
Title: Re: Harvoni Side effects
Post by: gnatcatcher on January 02, 2016, 03:15:36 am
pansy, glad you've joined us. I had ITP in 1971 and had to take prednisone for that and, more recently, for other conditions. As one of the Harvonians who got to enjoy the "Harvoni High," I found it interesting that Harvoni's extra energy was much more laid back than the overly revved-up feeling I got from prednisone. Like you, I did a watch-and-wait until Harvoni came along -- it's well worth the wait!

Gnatty
Title: Re: Harvoni Side effects
Post by: pansy on January 02, 2016, 06:21:19 am
Thank you, Else, for your welcome, and congrats on your Harvoni success!


pansy, glad you've joined us. I had ITP in 1971 and had to take prednisone for that and, more recently, for other conditions. As one of the Harvonians who got to enjoy the "Harvoni High," I found it interesting that Harvoni's extra energy was much more laid back than the overly revved-up feeling I got from prednisone. Like you, I did a watch-and-wait until Harvoni came along -- it's well worth the wait!

Gnatty



Gnatty, your post was so comforting.
I used to call the feeling I got within moments of taking the high dose of prednisone "the rev". I didn't like it at all.
The moon face, weight gain, and hair loss, weren't fun either...

Both my liver specialist and hematologist assure me, that if I still need to take the prednisone (even a half mg a day) it won't affect the Harvoni.
But I will have to cut the stomach antacids that go with it,
as as they can lessen Harvoni's effect...

Hopefully by March, it will be a very low dosage...

I thank you for your validation, as I hadn't talked with anyone else who had ITP, it was scary. I was having my regular check up at the liver specialist, and he noticed platelets were at almost zero.
That was 7/2014... It gave me something else to think about, until Harvoni became available!
I'm now waiting for my application to be approved.
Fingers crossed.
Thanks again, and congrats to you!


 :)

pansy
 
Title: Re: Harvoni Side effects
Post by: gnatcatcher on January 02, 2016, 08:07:10 am
pansy, according to the prescribing information that comes with each bottle of Harvoni, it isn't necessary to give up antacids -- they just have to be timed appropriately. Table 4 on page 8 starts off with a section on "Acid Reducing Agents" that includes "Antacids (e.g. aluminum and magnesium hydroxide)   It is recommended to separate antacid and HARVONI administration by 4 hours." It also covers how to take Harvoni with "H2-receptor antagonists (e.g., famotidine)" or "Proton=pump inhibitors (e.g., omeprazole)" in case one of those is what you take. You can download a PDF of Harvoni prescribing information from Gilead's web site: https://www.gilead.com/~/media/Files/pdfs/medicines/liver-disease/harvoni/harvoni_pi.pdf

You're lucky you had ITP in the modern era, when doctors know how to dose the prednisone. My platelet count had also dropped to near zero, but back in 1971, they jumped my dose up or down quite a bit depending on the latest platelet count. When 5 months had passed and the ITP still wasn't cured, they took my spleen out. It was during that surgery that I received the transfusions containing Hep C. As for the moon face, weight gain, and hair loss, me too (although I had begun losing hair 3 years prior).

I'll spare you the "organ recital," but compared to all I've been through medically in my life, taking Harvoni was super easy.

Happy New Year!

Gnatty
Title: Re: Harvoni Side effects
Post by: Philadelphia on January 02, 2016, 12:02:51 pm
Welcome Pansy and Woodstock. These new meds are amazing, this is a great time to be accessing treatment.

My only advice is to ride your own ride and don't worry overly much about other people's sx. Everyone's path on this journey is different. If sx come along use the advice here to mitigate them but don't go looking for them.

All the best for a peaceful and successful treatment.
Title: Re: Harvoni Side effects
Post by: beto on January 02, 2016, 01:25:47 pm
pansy/woodstock,

What philly said.  because (on this site) we all feel free to talk about our sides and anything else that comes up at the drop of a hat, naturally we hear all about details of some of the uncomfortable ordeals that arize.  We often end up with a distillation of the worst stuff.  It is comforting to get the positive and empathetic feedback, because most of us have been living alone with hep C and all of the strange symptoms, stigmas and tribulations even with loving families around. 

My side effects were not bad, but not nonexistent either.  If I had a challenging day, I just might post about it and perhaps even embellish for effect..teeheee.  At any rate even through the most harrowing reports, there is so much humor attached.  Some of the riba folks have been absolutely hysterical with self commentary and if you have not read any of Tommy's banter, then you have not lived  :)

All in all we have the opportunity to procure the impossible dream...cure.  Everyone of us will have a different journey and narrative.  You don't know starting treatment what is in store...however, most everyone are pleasantly surprised.  Regardless, just enjoy the ride.  The labs that read "undetected" will cruz you through the worst of side effects.
Title: Re: Harvoni Side effects
Post by: pansy on January 02, 2016, 09:05:13 pm
pansy, according to the prescribing information that comes with each bottle of Harvoni, it isn't necessary to give up antacids -- they just have to be timed appropriately. Table 4 on page 8 starts off with a section on "Acid Reducing Agents" that includes "Antacids (e.g. aluminum and magnesium hydroxide)   It is recommended to separate antacid and HARVONI administration by 4 hours." It also covers how to take Harvoni with "H2-receptor antagonists (e.g., famotidine)" or "Proton=pump inhibitors (e.g., omeprazole)" in case one of those is what you take. You can download a PDF of Harvoni prescribing information from Gilead's web site: https://www.gilead.com/~/media/Files/pdfs/medicines/liver-disease/harvoni/harvoni_pi.pdf

You're lucky you had ITP in the modern era, when doctors know how to dose the prednisone. My platelet count had also dropped to near zero, but back in 1971, they jumped my dose up or down quite a bit depending on the latest platelet count. When 5 months had passed and the ITP still wasn't cured, they took my spleen out. It was during that surgery that I received the transfusions containing Hep C. As for the moon face, weight gain, and hair loss, me too (although I had begun losing hair 3 years prior).

I'll spare you the "organ recital," but compared to all I've been through medically in my life, taking Harvoni was super easy.

Happy New Year!

Gnatty

Happy New Year, Gnatty!
Thanks for your reply and info!  8)

Reading your story of earlier time ITP treatment, woah.
You are a warrior!

I'm glad for you, that things have taken a better turn.

Thanks, again.

Also thanks to beto, & Philadelphia, for welcoming me...

This is a pretty friendly place.
I appreciate it!

pansy
Title: Re: Harvoni Side effects
Post by: slats1056 on January 02, 2016, 09:07:15 pm
  Welcome to Woodstock and Pansy!
     Glad You could make it but, hate that You had to because of the Hep C. At one time I toyed with the idea of starting Mu posts with a disclaimer. I seem to have gotten sucked into a black hole at times, yet still I persevere despite the obstacles put in front of Me! Take My posts with a 50 lb. block of salt and laugh Your ass off with Me. In no way do My posts on the dark side of things reflect on the others here that are not having a bad time at all. I hope You guys breeze through treatment with flying colors and sunshine and lollipops. I would venture to say that I believe that all should be out there to be known. At least for the small percentage of us that are having some issues! They say that it is no big deal that 2-3 percent experience this! UNLESS, You happen to be in that percentage!! I guess that makes Me the devils' advocate!! Somebody has to be the designated MF'er, so I take up the banner willingly. After all I am a Texan! :D This is after all a new and exciting treatment available to us.

   Again, welcome! Read the good and the bad. Yours will be an individual journey amongst friends here on the forums, take it all in. Ask questions, there are so many helpful people here that You would not believe it.

 IF A MAN IS FROM TEXAS , HE WILL TELL YOU!IF HE IS NOT , WHY EMBARRASS HIM BY ASKING? John Gunther
Title: Re: Harvoni Side effects
Post by: BillT on January 03, 2016, 10:03:41 am
Welcome to the forum Woodstock and Pansy,
                                 Everyone has pretty much covered it.Feel free to talk about anything.When you think it's just you going through something,you'll find out someone else has had the same thing happen to them.As has been said before,the only foolish question is the one not asked.We don't know it all,but we'll do our best to help.This is the best group of people to help you through this and have on your side.They're a lot of fun to... :)
Title: Re: Harvoni Side effects
Post by: Taraandorion on January 18, 2016, 12:52:40 pm
From Harvoni site:  The most common adverse
reactions (≥10%) were fatigue and headache in subjects treated with 8 , 12 or 24 weeks of HARVONI.
Bucky
Title: Re: Harvoni Side effects
Post by: Taraandorion on January 18, 2016, 12:57:18 pm
Hi I am  new to site not sure how to post but I am on day 11 and 3 days ago started to feel very hot in the face like it was going to burn off yesterday wasn't as bad waiting for doc to call back before I take it today . Any one else have this? :'(
Title: Re: Harvoni Side effects
Post by: Scoutdoy on January 18, 2016, 01:17:37 pm
Make sure you are drinking a lot of water.


Scout
Title: Re: Harvoni Side effects
Post by: HazelAustralia on January 18, 2016, 05:50:55 pm
Have you been in the sun? One of the meds I am taking makes me very sun-sensitive (I don't know which one). I find if I am in  the sun just for a few minutes without a hat and sun-screen, I get a burning feeling underneath my skin for quite awhile afterwards. The medical team provided me with extra strong sun screen along with my medication. Just something to be aware of.
H.
Title: Re: Harvoni Side effects
Post by: Mugwump on January 18, 2016, 06:26:50 pm
Hi I am  new to site not sure how to post but I am on day 11 and 3 days ago started to feel very hot in the face like it was going to burn off yesterday wasn't as bad waiting for doc to call back before I take it today . Any one else have this? :'(
I noticed a pronounced increase in capillary circulation to the face around two weeks into treatment. It was almost like having too much vitamin B3 in the system. But immediately afterwards the "harvoni high" occurred and many here started to feel like superpersons around week 3.... (to be politically correct).


Don't forget that as HCV progresses and destroys your liver, essential functions like good blood circulation also go for a &*^)!!!


I looked like a ghost before going on harvoni and my skin is now almost human again and I don't look like something from tv zombie shows! Expect the unexpected is all I can say about treatment but it is becoming clear that many changes occur quickly as harvoni rids you of the virus some of them can be surprising and can be scary until they are understood.


Before treatment I was having trouble keeping warm, like I stated I looked like a ghost that had been sucked dry by a vampire. So a sudden increase in circulation came as a shock to my system, but it was a welcome one.


All the best and I am sure that you will see the end of HCV soon.



Title: Re: Harvoni Side effects
Post by: bmp on January 19, 2016, 02:55:37 pm
I am starting tomorrow night.  I am 47 years old and had several blood transfusions at birth which is the most likely way I got the disease.  I will post updates for those about to start the drug.  Thanks to all the previous posters for their comments.
Title: Re: Harvoni Side effects
Post by: gnatcatcher on January 19, 2016, 02:57:35 pm
Welcome, bmp -- wishing you a smooth ride.
Title: Re: Harvoni Side effects
Post by: Mugwump on January 19, 2016, 03:21:24 pm
Have you been in the sun? One of the meds I am taking makes me very sun-sensitive (I don't know which one). I find if I am in  the sun just for a few minutes without a hat and sun-screen, I get a burning feeling underneath my skin for quite awhile afterwards. The medical team provided me with extra strong sun screen along with my medication. Just something to be aware of.
H.
Olysio is the culprit not Harvoni. http://www.lucindaporterrn.com/hepatitis-c-treatment-beware-of-photosensitivity/
There is no protocol to administer Harvoni and Olysio. I was going to be treated with S and O originally but Harvoni became available just as my approval came through.
Santa might need it though because the treatment with Harvoni and Olysio [/color]might also be effective to treat those with a serious HO HO syndrome.
Title: Re: Harvoni Side effects
Post by: CHepCFree on January 25, 2016, 04:07:29 pm
I am 11 months post 12 week treatment and have lung scarring, neuropathy, constant headache, tinnitus, dizziness and irregular heartbeat, none of which I had pre-Harvoni. I was very healthy before and now have a decreased quality of life.    I am not the only one with these problems.   This treatment is not for everybody.  Be careful. 
Title: Re: Harvoni Side effects
Post by: gnatcatcher on January 25, 2016, 07:18:49 pm
CHepCFree, it grieves me to learn of your decreased quality of life. Thank you for posting your experience so that all may make the most accurate possible total risk assessment.

Looking back at the times that allopathic medical treatments have harmed me, I have wondered what more I could have done in order to have predicted the outcome with sufficient accuracy. In the case of possible Harvoni harms, it is now possible to know in advance if treatment will be ineffective because of resistance (although since resistance testing is expensive, I'd be surprised if an insurance company would cover it for anyone contemplating treatment, given the small percentage of people who turn out to be resistant). How can lung, nerve, heart, etc. problems like yours be predicted for a particular individual?

Gnatty
Title: Re: Harvoni Side effects
Post by: Param on January 25, 2016, 09:18:07 pm
Hi all,

It's comforting to read what everyone's gone through.   

Recently I have been having a lot more symptoms than usual that I wanted to see if others have had also. I am about 14 weeks into my 24 week treatment of Harvoni.  The past couple days I have had a fever of 100-102, severe headache, blurry vision and constant chills.  My doctor did more bloodwork to see what else it could be but since my fever, chills and headache have been constant I cannot sleep properly and quite concerned.

Anyone else have these symptoms also?  Any tips/opinions?
Thanks
Title: Re: Harvoni Side effects
Post by: Lynn K on January 26, 2016, 01:57:08 am
Is it possible you have the flu? The chills are likely associated with your fever and the same for the headache.

Rest in bed if you can, keep up your hydration and if okay with your doctor take Tylenol less than 2000 mg /day to help reduce your fever.

Also cool compresses on your forehead my help.

Get well soon
Lynn
Title: Re: Harvoni Side effects
Post by: Param on January 27, 2016, 03:06:37 pm
Hi Lynn,

Thanks for your opinion and thoughts. Because I didn't have cold like symptoms I didnt think it would be the flu.  Because of my fever, chills and headaches I went to emerg to get checked and turns out I have a kidney infection. So I've been admitted to the hospital and on IV antibiotics til an improvement is seen.  Has anyone else had kidney infection during treatment?  Could be unrelated to Harvoni...not sure as they say it's not their common side effect seen.

Thanks
Title: Re: Harvoni Side effects
Post by: Lynn K on January 28, 2016, 04:28:25 am
Yeah I was just figuring that a fever usually indicates an infection glad they found your cause. I agree if you have a fever and especially a high fever you should seek medical attention especially with us having compromised immune systems and taking exotic medicines we can't be too careful.

I was thinking the flu because, well it is flu season, and the flu can be accompanied by fever.

Colds and flu have different but similar symptoms:

If you have a cold, you’ll probably experience symptoms such as:
runny or stuffy nose
sore throat
sneezing
mild-to-moderate fever
cough
headache or body aches
mild tiredness

Flu symptoms can be similar to those of a cold, although they tend to be more severe. Symptoms can include:
dry, hacking cough
moderate-to-high fever (although not everyone with the flu will run a fever)
sore throat
shaking chills
severe muscle or body aches
headache
stuffy and runny nose
profound fatigue (may last up to two weeks)

Anyway hope they get you feeling better soon
Lynn
Title: Re: Harvoni Side effects A word of encouragement.
Post by: Mugwump on January 28, 2016, 04:01:34 pm
Years of deteriorating hearing seem to be slowing now that HCV is no longer eating away at my liver. Perhaps because I play classical guitar, which is an instrument that is not as loud as most, my sensitivity to hearing problems particularly tinnitus (http://www.mayoclinic.org/diseases-conditions/tinnitus/basics/causes/con-20021487) , is very acute.
Eight months after taking my last pill, the all important hearing sensitivity to quiet high harmonics from the instrument and accuracy of pitch perception is starting to improve instead of deteriorating rapidly.
Before treatment I had almost given up playing because of how difficult things were becoming.


I can wax rhapsodic about how the upper harmonics of the guitar create an orchestral heavenly voice while the player is performing and why this aspect of music is so fantastic. But when the ability to colour the voice with intonation while playing is lost, playing becomes strained and similar to trying to play while noise is obscuring the beauty of the sound. The tinnitus made recording what I was playing almost impossible.


I truly hope many others experience the changes that I am experiencing and wish all the best to my brothers and sisters in recovering from this terrible disease and the treatment(s). Tinnitus did increase at first during treatment and stayed for a few months after treatment but is now down to a level where my hearing sensitivity is better than it has been in 20 years.


Eric
Title: Re: Harvoni Side effects
Post by: Else on January 28, 2016, 06:20:23 pm
Congratulations!!!  What a wonderful gift to reclaim your music! 
Title: Re: Harvoni Side effects
Post by: ggg on January 30, 2016, 09:44:15 am
Hello, i'm evaluating to start with harvoni, I would like to know all side effects related to eyes and vision because I have a congenital retinopathy (r.o.p.) i had surgery with scleral buckle in dx eye for retinal broke, and I had many laser session for retinal tears in both eyes, so my eyes are not very well with many retinal injuries. For me is a MUST to not make worse my retinal condition. (I have waited for interferon free tratment cause of my eyes condition)

Since now i have read in this thread the main side effects eyes related of harvoni is blurred vision.
I have read also about one single case of sub occlusion of retinal vein 3 month eot.

Can you report other eyes related side effects?
Someone had an eye examination during / after harvoni tratment?
The blurred vision always disappear at end of tratment?

Thanks
Title: Re: Harvoni Side effects
Post by: Mugwump on January 30, 2016, 01:30:26 pm
Hello, i'm evaluating to start with harvoni, I would like to know all side effects related to eyes and vision because I have a congenital retinopathy (r.o.p.) i had surgery with scleral buckle in dx eye for retinal broke, and I had many laser session for retinal tears in both eyes, so my eyes are not very well with many retinal injuries. For me is a MUST to not make worse my retinal condition. (I have waited for interferon free tratment cause of my eyes condition)

Since now i have read in this thread the main side effects eyes related of harvoni is blurred vision.
I have read also about one single case of sub occlusion of retinal vein 3 month eot.

Can you report other eyes related side effects?
Someone had an eye examination during / after harvoni tratment?
The blurred vision always disappear at end of tratment?

Thanks
During Harvoni treatment my vision was effected to a greater extent by severe sinus problems that I suffer from. Also a very bad flu and cold season hit just as I was finishing treatment. Overall I must say my vision was effected marginally during treatment. However: my vision is now better than it has been in years at 8 months post treatment. I renewed my prescription post treatment last month and it has only marginally changed over 12 years.


Perhaps we experience greater sensitivity to common problems as our livers regain normal functions. Years of deterioration of the liver in theory may have made us less aware of small changes to our metabolism and many important functions that others who do not have HCV are more sensitive to.


So the greatest change for me has been learning how it feels to have normal functions again for the first time in many years.


I found it was very important for me to do things to relax. Harvoni effects your renal system almost immediately and can cause changes in blood pressure for some on the drug which obviously can effect vision.


Since you have a retinal detach problem you need to carefully consult with a treatment specialist team. I was very fortunate and the clinic that deals with infectious disease treatment was there for me. The staff are more experienced with HCV treatment than walk in clinics. They monitored my vision, bp changes, renal functions and mental well being during treatment so the team was fantastic.


When I was first approved this time around it was for S and O treatment the specialist nurse warned me that it could effect light sensitivity and to get my eyes checked before starting treatment, however I was lucky and wound up on Harvoni instead. Olysio treatment was a major concern for me considering the major side effects and unknown efficacy. The decision had been made that if I did not clear the virus quickly and was not a strong responder to S and O, Ribaviron would have been added. Ribaviron almost put me in hospital for a blood transfusion in 2004.


Because you have a congenital eye problem I highly recommend having treatment through a specialised clinic rather than by a walk in generalist clinic or just a single doctor.


You are on the right road and being careful about how you go about getting treated is very important.


All the best getting treatment and freedom from this disease.
Eric
Title: Re: Harvoni Negative experience
Post by: Redfish on March 01, 2016, 02:41:40 pm
Bad experience with Harvoni
Quote
    Hep C experiences
Born 9-29-1943 Graduated High School in 1961
1961 Surgery in Military Hospital with two transfusions, suspected cause of Hep C I now have.
1973-74  first colonoscopy, blood work indicated viral load of 6-7 million Hep C, doctors suggested a liver biopsy which showed moderate liver damage.
1974-75 Began Alpha Interferon medication, every other day, minor side effects.
First course left traces of Hep C and a second course of Alpha Interferon was begun. Viral load was decreased majorly but not entirely gone.
Hep C viral load was staying very low for the next few years.
2014            Bringing us to the current time, did a routine colonoscopy and endoscopy to see if anything was present, removed two pre cancerous nodules and minor irritation from GERD.
Gastroenterologist at the time suggested a new drug just out and available which was Harvoni
Got funding for prescription and three month supply was obtained.
Once the drug was here I thoroughly read the package insert and noticed that there could be problems if Harvoni was given in conjunction with Digitalis/Digoxin which I had been prescribed and was taking daily.  I queried the GI doc about that and he suggested it would not be a problem so I initiated taking the medication once daily as prescibed.
Within three or four days, perhaps 5 or 6 days I was hit with the side effects.  Those consisted of Inability to hold food or water down, slight fever, incredible weakness, could not stand up for long without throwing up, even liquids would come back up.  I queried the GI doctor about the side effects and his reply was to try and  change medication times from evening to morning, this had no effect on the side effects.
After 28 days on Harvoni, I was admitted to Flagler Hospital, severely dehydrated, still unable to hold solid food down causing lack of nutrition.  I had been unable to take daily medications or to keep them down so blood levels were up and down with normal meds.  I was also found to be retaining fluids so a diuretic was given, I had minor CHF at the time.  I was so weak I could not drive or even walk around much and ended up almost living in my recliner for the next few months.
A viral load blood test indicated None detected of the Hep C.
A second blood test a month later showed the HepC was back, in minor amounts.  Not surprising since I was not taking Harvoni anymore.
  As a result of the hospitalization, and the intense side effects from Harvoni I thought about it and stopped the Harvoni treatment.  I could see no chance that I could last the next two months taking Harvoni .  I stopped taking Harvoni on May 29
 It was, to me, a good call, I had lost 40 some pounds and was weighing 135 pounds at the time, my normal weight is 175-180 I am 6'1.  I began to hydrate and tried to eat but I just could not keep any solid foods down.  The rest of 2015 was spent nursing myself back to health, trying to keep food down, taking meds to stop the vomiting, all that year I vomited every day, several times a day, still unable to eat a full meal or so weak I was gaining weight at a snails pace but gaining. 
  Today, 2016, I am still suffering the sides, still vomit every day, several times, and am severely weakened by Harvoni, I cannot do even the smallest task without vomiting and cannot stand up more than a few minutes without becoming weak, my left leg is almost unusable, the right leg compromised as well and generally weak.  If I sit down in a low chair, I cannot even get up without help. Should I fall, I could not get up without help.  Still vomiting 2-3 times a day. Able to finally hold food, I must eat in small portions and five or six times a day but it's working, I am back to 165 lbs still going for 170 but its slow going.
  I am still actively involved in seeking medical help and have seen a neurologist and am now working with a neurosurgeon to see if we can control the vomiting. I am also in physical therapy weekly. Also the usual cardio doctors and my family doc are all working on the issue, I am now seeing a Psychiatrist for severe depression and eating disorders.   I wlll Never take Harvoni, ever again.     
Title: Re: Harvoni Side effects
Post by: Mugwump on March 01, 2016, 03:58:47 pm
[/size][/font][/size]
Quote
1973-74  first colonoscopy, blood work indicated viral load of 6-7 million Hep C, doctors suggested a liver biopsy which showed moderate liver damage.[/size][/font][/size]1974-75 Began Alpha Interferon medication, every other day, minor side effects.First course left traces of Hep C and a second course of Alpha Interferon was begun. Viral load was decreased majorly but not entirely gone.Hep C viral load was staying very low for the next few year
Time line is rather suspicious unless the individual you are quoting was completely mistaken about when they received TX and a diagnosis of HCV and any treatment for NON A NON B hep did not happen until into the 1980's


So the entire quotation is very dubious IMO and is a shill!


YES WE NEED TO establish the long term safety of these new incredible direct acting antivirals but let us not spread lies and worse still discourage others from getting treatment with fud and bullcrap nonsense!!!!
GRHHHH!!!!!!!














[/size][/font]
Title: Re: Harvoni Side effects
Post by: Redfish on March 01, 2016, 05:19:09 pm
Its sad you're so suspicious.....I"m real, I really have HepC    If my timelines are off I'm sorry, the post is still under construction and I'll put together an accurate timeline as i gather info in the files.
I think it's more important to address the side effects from Harvoni and it's interaction with medications each person takes.
Thanks for your input.......
Title: Re: Harvoni Side effects
Post by: Scoutdoy on March 01, 2016, 05:50:41 pm
[/size][/font][/size]Time line is rather suspicious unless the individual you are quoting was completely mistaken about when they received TX and a diagnosis of HCV and any treatment for NON A NON B hep did not happen until into the 1980's


So the entire quotation is very dubious IMO and is a shill!


YES WE NEED TO establish the long term safety of these new incredible direct acting antivirals but let us not spread lies and worse still discourage others from getting treatment with fud and bullcrap nonsense!!!!



GRHHHH!!!!!!!



Hi Eric, I was a little curious about this too since hep c wasn't discovered until 1989.


Scout












Title: Re: Harvoni Side effects
Post by: Mugwump on March 01, 2016, 06:48:06 pm
Its sad you're so suspicious.....I"m real, I really have HepC    If my timelines are off I'm sorry, the post is still under construction and I'll put together an accurate timeline as i gather info in the files.
I think it's more important to address the side effects from Harvoni and it's interaction with medications each person takes.
Thanks for your input.......
I am deeply sorry for my assumption! I looked at your posts and determined that you were first treated with the original alfa interferon 23 years ago.


I can fully understand that you have had HCV for most of your life, as I did. I can also fully understand that you may very well have not responded well to Harvoni treatment. It seems the weaker one is the more toll removing HCV and a rapid increase in the exchange of dead liver cells takes on the person undergoing treatment.


I was blessed that I am only 63 and not that far along in the progression and my cirrhosis is compensated.
You have my hopes and prayer and best wishes.


Please forgive my impertinence as I truly thought you were quoting the treatment of another person not yourself. And I also fully understand how your dates can be completely confused.


Sincerely
Eric
Title: Re: Harvoni Side effects A word of encouragement.
Post by: I fightis thetitis on March 02, 2016, 03:39:43 am
Great to hear Eric.
I am a professional musician and just started week 15 of 24 on Harvoni. My SE are ridiculous insomnia and tinitus. (which is a high A note with an occasional F#, if I can only acquire a D note with them I will have a full D chord.haha)
Harvoni treatment is like playing "Let's Make A Deal" I will gladly risk what's behind door number one (Harvoni) and all it's possible SE, knowing that if I stay pat and don't risk anything the odds are against me that the Dragon will take me out sooner.

Good luck with your Guitar playing and recording.

Cheers,
Greg
Title: Re: Harvoni Side effects
Post by: S.Belle on March 02, 2016, 07:18:55 am
Five months post treatment and still NO virus detected. Tinnitus is slowly dissipating. It was my only side effect and I really don't notice it anymore.

I highly recommend Harvoni treatment, as it outweighs the potential diagnosis of liver cancer.
Title: Re: Harvoni Side effects
Post by: Redfish on March 02, 2016, 09:20:09 am
Thank you Eric, appreciate your kind input, I'm 73 and not that well versed with computers......in any event, this problem with Harvoni is still an issue, personally i cant figure out why im still feeling sides almost a year later, it has pretty well ruined the last nine months of my life and still affects me daily.   
  I'm still trying to figure out exactly how it happened, best guess is that Harvoni interacted rather severely with one or more drugs I was taking at the time, suspicions lead to finding more information about what it does when it interacts but there is so little info out there on the problems with drug interactions.
The drugs i was already taking for heart probems were Digoxin (digitalis), pacerone and possibly metroprolol.
  I will say that it was an incredibly difficult decision to stop taking Harvoni, weighing the positive and negative outcomes but....I have never ever been that sick and unable to maintain liquid and solid input.  I was down to 145 weight wise and actually was becoming almost delerious and could see that it was not going to get better and the decision was made, by me, to stop taking it.
  I don't regret stopping at all and will continue to research the information available on sides till I get an answer.  Time will tell.
Title: Re: Harvoni Side effects
Post by: Mugwump on March 02, 2016, 10:09:55 am
Redfish: The ledipasvir component of Harvoni is ingested in different ways in the digestive tract than soposbuvir. So the S component most likely did not cause the digestive issues.


It might very well be that part of the Harvoni treatment effects some of us differently and you have GERD and a very sensitive GI tract therefore have something else is going on which makes ingesting some medications difficult.


I hope all of this was reported to the regulators and Gilead. If your doctors did not then SHAME ON THEM! Please make sure that your doctors did report what happened to you.


It might be a good idea to apply to Gilead to enrol in a clinical trial the new combos that does not include the ledipasvir. It seems that those who are not effectively treated by Harvoni are being listened to by Gilead and they really are not that unresponsive to those of us who really need help.


Even if they seem to be overly greedy to some, they are spending large amounts developing better treatments for all forms of this disease. It seems their end goal is the most important one, the eventual eradication of this curse not just the lining of a limited number of peoples purses.
Title: Re: Harvoni Side effects A word of encouragement.
Post by: Mugwump on March 02, 2016, 10:23:13 am
Great to hear Eric.
I am a professional musician and just started week 15 of 24 on Harvoni. My SE are ridiculous insomnia and tinitus. (which is a high A note with an occasional F#, if I can only acquire a D note with them I will have a full D chord.haha)
Harvoni treatment is like playing "Let's Make A Deal" I will gladly risk what's behind door number one (Harvoni) and all it's possible SE, knowing that if I stay pat and don't risk anything the odds are against me that the Dragon will take me out sooner.

Good luck with your Guitar playing and recording.

Cheers,
Greg
Try playing some dual tonality and mixed modality music. It really helps to get over 1/3/5 syndrome and a penchant for peddling 1 to 5 modality all the time. For me that and quick hemiola does the most to get over the fact that there is a constant zing in my ears. Trouble with that is if you are a pro Country background hand they expect nothing new on the stage!!! 8) [size=78%] [/size]
[/size]
[/size][size=78%]I am writing and playing something new and it uses mixed tonality and is an impression of what Maurice Ravel might have written if he was a cowboy here in Canada. It is an Homage.[/size]
[/size]
Title: Re: Harvoni Side effects
Post by: beto on March 02, 2016, 10:37:56 am
Hey Redfish,

What an ordeal.  So sorry for your issues with Harvoni.  What we all tend to forget is how different we all are.  You represent an extreme example of adverse reactions and those that have zero side effects the other side of the spectrum and everything in between of course.  Perhaps in the near future profiles can be established for those who might likely be vulnerable to debilitating side effects.  I hope that you are able to reach a point of stability very soon.  Indeed, there also may be something come along that you can tolerate.  Maybe even something from the alternative side of medicine.  I wish you the best and thanks for sharing your story.   peace
Title: Re: Harvoni Side effects
Post by: Redfish on March 02, 2016, 11:09:52 am
Many thanks for the input gentlemen, I need to get in touch with as many of those that have the same problem in order to put what's happening to me in perspective.
I have contacted and submitted the problem to Gilead but have recieved no answer as of yet.  I am seeing a lot more of folks posting and am gathering information daily on the problems with Harvoni.
My supposition is that Gilead was in such a hurry to get Harvoni on the market that they neglected to post sufficient information on side effects.  In comparing what they knew a year ago to what is out there today makes Gilead look like they simply put the new drug on the market prematurely.
 Not to mention that in my research i also found a number of deaths caused by Harvoni, granted that could happen with any medication but perhaps should be looked into a bit deeper by Gilead.
  Thank you both for your answers, it helps me tremendously, up to now i've been feeling very alone in the fight and am glad to hear what others are experiencing,  I hope to come to some resolution asap and will gladly seek other available drugs coming on the market.
Mugwump, thanks for the info on the two parts to Hrvoni and the different reactions to both, I'll study that more today.thank you.
Title: Re: Harvoni Side effects
Post by: I fightis thetitis on March 02, 2016, 01:17:09 pm
Hey Redfish,

So sorry to hear that.. What a bummer on your sides.. As you suggested I would not be surprised if your SE were related to your other drug interactions.

What is your viral load as of now?
Best of luck to you and please keep checking in so we can understand your progress.
Greg

 
Title: Re: Harvoni Side effects
Post by: beto on March 02, 2016, 01:27:20 pm
Redfish

You are a rarity but not alone.  Your experience is not a popular one with Gilead or with others on Harvoni that do not want to consider that your experience could happen to them.  I recall when I was trying to get Harvoni...a holistic physician got all up in arms when I told him I was trying to get it.  He had a patient that had a rough time and the numbers to prove it.  That said, a majority seem to sail through treatment with only marginal discomfort.  Then there is that group that are able to "get through" but, not unscathed.  Also, there is definitely something going on post treatment for many.  Re-laps might be slightly higher in the general uncontrolled arena, too. least it seems that way.

Most folks are more that willing to trade this disease it for the price of some side effects...the meds do a good job on the HCV.  Gilead had only their small studies to glean the information from.  Now that it has opened up to a large group, many new things will come to light.  I hope that they broaden their side effect information.  Everyone wanted these meds to be approved fast.  If they hadn't we would all be screaming I suppose  :).  Again, sorry your journey has been a troubled one.
Title: Re: Harvoni Side effects A word of encouragement.
Post by: Mugwump on March 03, 2016, 11:16:21 am
Great to hear Eric.
I am a professional musician and just started week 15 of 24 on Harvoni. My SE are ridiculous insomnia and tinitus. (which is a high A note with an occasional F#, if I can only acquire a D note with them I will have a full D chord.haha)
Harvoni treatment is like playing "Let's Make A Deal" I will gladly risk what's behind door number one (Harvoni) and all it's possible SE, knowing that if I stay pat and don't risk anything the odds are against me that the Dragon will take me out sooner.

Good luck with your Guitar playing and recording.

Cheers,
Greg
Greg. The insomnia was a very serious concern for me at times during the 24 week battle. It effected my rationale. I found that when I got physical exercise things got better and bearable. If you can get out and smell the roses do so it is more important than most people might think. I worked on doing things special for more than myself when I could and did some serious rowing of a pontoon boat, stream hiking and fly fishing. And worked when I could. I know it helped tremendously. Before treatment I had all but hung up my boat and waders!


All the best in the last few weeks of the battle!
Eric
Title: Re: Harvoni Side effects
Post by: Forest dweller on March 18, 2016, 07:40:47 pm
Hi everyone!
Has anyone gotten blurry vision on Harvoni??
Title: Re: Harvoni Side effects
Post by: Prangster on March 23, 2016, 02:23:01 pm
Hello to everyone.  I will be starting Harvoni probably next week (delivery to my doctor is scheduled for 3/29) and some other forums are reporting side effects that are really frightening.  I have to drive 40 miles to work three days a week and am anxious about being able to do that.  Vision interference would be a significant problem for me.  I am treatment naive, have had HCV for at least 30 years (diagnosed in the 90s when I tried to give blood but any risk behavior was in the 80s), with no cirrhosis detected by ultrasound and a fibrosis level of 2 according to biopsy.  I will report after I start taking the drug, but I look forward to hearing more about your experiences with Harvoni.
Title: Re: Harvoni Side effects
Post by: Scoutdoy on March 23, 2016, 02:32:52 pm
Prangster, don't get freaked out by possible side effects. Most do not have severe side effects. Stay hydrated and take your pill at the same time every day. Honestly, I felt better while taking Harvoni than I had felt in 25 years.


Scout
Title: Re: Harvoni Side effects
Post by: Prangster on March 23, 2016, 02:54:23 pm
Prangster, don't get freaked out by possible side effects. Most do not have severe side effects. Stay hydrated and take your pill at the same time every day. Honestly, I felt better while taking Harvoni than I had felt in 25 years.


Scout

Thanks, Scout.
Title: Re: Harvoni Side effects
Post by: gnatcatcher on March 23, 2016, 02:57:59 pm
Prangster, my eyes were fine on Harvoni, as were those of nearly all Harvoni takers on these HEP forums. We can't predict for sure what your experience will be, but your odds are excellent that (assuming you stay hydrated), you'll have an easy time on Harvoni. Keep in mind that forums hear much more often from those who are having a problem than from those who are breezing through. Like Scout, I felt good on Harvoni, which even gave me extra energy.

Gnatty
Title: Re: Harvoni Side effects
Post by: Scoutdoy on March 23, 2016, 03:03:03 pm
Gnatcatcher is right, I felt great and like I was on speed for 12 weeks.

Scout
Title: Re: Harvoni Side effects
Post by: Prangster on March 23, 2016, 03:13:22 pm
Prangster, my eyes were fine on Harvoni, as were those of nearly all Harvoni takers on these HEP forums. We can't predict for sure what your experience will be, but your odds are excellent that (assuming you stay hydrated), you'll have an easy time on Harvoni. Keep in mind that forums hear much more often from those who are having a problem than from those who are breezing through. Like Scout, I felt good on Harvoni, which even gave me extra energy.

Gnatty

Thanks, that sounds promising.  I have just started Synthroid for hypothyroidism and frankly I'm having more problems with it than I've heard about Harvoni.
Title: Re: Harvoni Side effects
Post by: Mugwump on March 23, 2016, 07:43:46 pm
Thanks, that sounds promising.  I have just started Synthroid for hypothyroidism and frankly I'm having more problems with it than I've heard about Harvoni.
I am on 112 replacement Synthroid. This level has not changed in over 25 years. The key with thyroid replacement hormone is that if you eat too much at the time you take the pill it will not be ingested completely. That along with a steady approach to levels of the medication per day is the way to stay out of trouble.


So while on Harvoni I took the two at the same time every morning on an empty stomach. The ledipasvir component of Harvoni is best absorbed in an acidic state. So by not eating for at least an hour after taking both meds I had no problems taking either med. As Scoutdoy has stated staying well hydrated does two things, it helps your system to flush as your liver releases all the dead cells killed by HCV and the water keeps you from getting too hungry when you take the pills. Taking the Synthroid at the same time every day is extremely important and yes you can get headaches from excess thryroid hormone in your system.


When I have made a mistake and accidentally taken my thyroid hormone at too close an interval the 3.5 day half life of thyroxine is about the amount of time that having too much thyroxine in the blood lasts. Sleeplessness, headache, increased heart rate and anxiety are the primary effects of thryroxine overdose. It is a mistake to stop taking the pill during the overdose period because then you will experience the opposite effect of too low a level of hormone also in direct proportion to the timing of not taking the med. Thyroid replacement hormone in the body is very different from insulin and is much easier to deal with once well understood.


A few years back I was having trouble and my TSH levels started to spike. My doctor suggested taking the Synthroid on an empty stomach and since then my TSH levels have remained very stable and the level of the drug did not need to be increased. (TSH, thyroid stimulating hormone, is the reciprocal hormone created by the body to stimulate the thryroid gland into producing more thyroxine, and is how measurements of the effectiveness of thryroid hormone replacement treatment are made)


Don't go overboard with the water intake though, just make sure that you can sweat while you exercise and not get headaches from being dehydrated and you will be fine. As Lynn and others have stated the amount of fluids you take in includes the fluids in the foods you eat. During treatment I tried to have good soups for lunch every day when I could that way I did not overeat or feel dehydrated later on in the day. The initial headache from the Harvoni was not terrible and my vision was not severely effected the headache eased off after the first two weeks of treatment and was gone by week 3.


All the best
Eric
Title: Re: Harvoni Side effects
Post by: Prangster on March 23, 2016, 08:03:22 pm
Thanks for the detailed reply, Eric.  I take my levothyroxin in the early a.m. (usually about 4) and then go back to bed for a while because it makes me tired.  I had thought I would take the Harvoni at a set time before dinner because it would be easier to make sure it was the same time every day, but I will reconsider after reading your experience. 
Title: Re: Harvoni Side effects
Post by: Scoutdoy on March 23, 2016, 10:44:02 pm
Prangster, I took my Harvoni early in the morning also, some people on the forum have said taking it at night kept them up. Everyone is different though, you can always adjust your times if it doesn't work out. Good luck to you, and welcome to the cure train


Scout
Title: Re: Harvoni Side effects
Post by: Scoutdoy on March 23, 2016, 10:44:22 pm
Prangster, I took my Harvoni early in the morning also, some people on the forum have said taking it at night kept them up. Everyone is different though, you can always adjust your times if it doesn't work out. Good luck to you, and welcome to the cure train


Scout
Title: Re: Harvoni Side effects
Post by: Prangster on April 09, 2016, 09:57:04 am
Some suggestions:
Massage before sleeping, if possible. Hot bath or shower before bed. Warm milk or herbal tea. Read a boring book or watch a droning documentary. Deep breathing that simulates sleep breathing helps calm my body down for sleep. If you have a partner that can sleep, mimic their breathing.

I drink loads of coffee which probably doesn't help w/ sleeping, but I have had very few headaches. I'm on week 5 now. I've gotten the 'heat puff' and clammy skin (I call them flushes because they remind me of hot flashes minus the sweats) since about the 3rd day on Harvoni- always after I take it, and still get it. I get random flushes, too.
I also had a burst of energy at first. By week 3 I was irritable and spacy- probably from fatigue. In week 4 I crashed and got more sleep. I've taken a few naps, too since then. This has been the best week, so far for SEs.  Maybe I'm getting used to it. The worst of it is hopefully behind me.
Hope this helps. Wishing you a speedy treatment! May the weeks fly by!

I had insomnia before I started Harvoni and the herbal sleep aid I used to take is forbidden by my doctor.  I'm on day 6 and I have been taking a Tylenol PM every night as recommended by my doctor, with good results.  I've not had bad side effects yet, although I did wake up this morning very achy in the back and legs. 
Title: Re: Harvoni Side effects
Post by: Baxter on April 09, 2016, 01:45:53 pm
Prangster, what herbal sleep aid was that? I'm looking hard at passionflower, but have not been able to get very much reliable information on it from anyone.
Title: Re: Harvoni Side effects
Post by: Prangster on April 18, 2016, 08:53:29 am
Prangster, what herbal sleep aid was that? I'm looking hard at passionflower, but have not been able to get very much reliable information on it from anyone.

Sorry it took so long to reply.  I took a sleep aid made by  Swanson Vitamins called "Sleep Essentials."  Unfortunately, passionflower was one of the ingredients my doctor advised me to stay away from.

Genotype 1B
Last AST/SGOT 61 U/L
Last ALT/SGPT 85 U/L
Hep C RNA Quantitative 4,336,190
Hep C RNA IUs/ml 6.64 log IU/ml

Just took my first set of tests since starting Harvoni this morning.
Title: Re: Harvoni Side effects
Post by: CHepCFree on October 13, 2016, 12:20:19 pm
Harvoni and other Hep C antivirals are now proven to possibly reactivate Hep B.

<solicitation removed>
Title: Re: Harvoni Side effects
Post by: Lynn K on October 13, 2016, 01:14:50 pm
People who have been vaccinated against hep b will have antibodies to hep b but are not at risk only those with prior hep b infection may be at risk.
Title: Re: Harvoni Side effects
Post by: CHepCFree on October 13, 2016, 01:17:52 pm
That is not true.
Title: Re: Harvoni Side effects
Post by: Lynn K on October 13, 2016, 01:27:49 pm
http://www.fda.gov/Drugs/DrugSafety/ucm522932.htm

"The U.S. Food and Drug Administration (FDA) is warning about the risk of hepatitis B virus (HBV) becoming an active infection again in any patient who has a current or previous infection with HBV and is treated with certain direct-acting antiviral (DAA) medicines for hepatitis C virus."

Prior infection only nothing about having antibodies due to being vaccinated. Being vaccinated and having antibodies is not the same as having been infected with hep b previously.
Title: Re: Harvoni Side effects
Post by: lporterrn on October 13, 2016, 03:43:03 pm
Lynn's facts are correct. The issue is reactivation:
Quote
HBV reactivation is defined as an abrupt increase in HBV replication manifesting as a rapid increase in serum HBV DNA level or detection of hepatitis B surface antigen (HBsAg) in a person who was previously HBsAg negative and hepatitis B core antibody (anti-HBc) positive. Reactivation of HBV replication is often followed by hepatitis, i.e., an increase in transaminase levels and, in severe cases, an increase in bilirubin levels, hepatic failure, and death...Cases of HBV reactivation have been reported in HCV patients treated with DAAs who are hepatitis B surface antigen (HBsAg) positive and also in patients with serologic evidence of resolved HBV infection (i.e., HBsAg negative and anti-HBc positive), and were not receiving HBV antiviral treatment.

People who were never HBV+ and were vaccinated would be HBsAg negative and anti-HBc negative, thus not at risk.
For more on the various tests used to determine HBV status, see https://www.hepmag.com/basics/hepatitis-b-basics/hepatitis-b-testing (https://www.hepmag.com/basics/hepatitis-b-basics/hepatitis-b-testing)
Title: Re: Harvoni Side effects
Post by: dragonslayer on October 13, 2016, 07:59:23 pm
Regarding this possible HBV reactivation, I thought I saw in an article that the reactivation, if its going to occur, usually occurs within 4-8 wks of DAA treatment completion, but I couldnt find it again.. Does anybody know what the time frame is for this?  I contracted acute HBV back in the early '70s and resolved shortly thereafter.  I completed Harvoni treatment in January, 2015. All recent liver related bloodtests have been normal. Am I in the clear?
Title: Re: Harvoni Side effects
Post by: badbradley on October 13, 2016, 09:58:02 pm
Regarding this possible HBV reactivation, I thought I saw in an article that the reactivation, if its going to occur, usually occurs within 4-8 wks of DAA treatment completion, but I couldnt find it again.. Does anybody know what the time frame is for this?  I contracted acute HBV back in the early '70s and resolved shortly thereafter.  I completed Harvoni treatment in January, 2015. All recent liver related bloodtests have been normal. Am I in the clear?
Here is the FDA report:
http://www.google.com/url?sa=t&rct=j&q=&esrc=s&source=web&cd=2&ved=0ahUKEwiI5ab2lNnPAhXohlQKHcr8AzEQFgglMAE&url=http%3A%2F%2Fwww.fda.gov%2Fdownloads%2FDrugs%2FDrugSafety%2FUCM523499.pdf&usg=AFQjCNEH4Iw9YpDEQzq02zHI90Q1kw_t2Q&sig2=keqn8Q4rgG2BbWDLYk2oKA&bvm=bv.135475266,d.cGw&cad=rjt

So yes 4 - 8 weeks is the usual timeframe for reactivation.
Title: Re: Harvoni Side effects
Post by: dragonslayer on October 13, 2016, 10:06:52 pm
Here is the FDA report:
http://www.google.com/url?sa=t&rct=j&q=&esrc=s&source=web&cd=2&ved=0ahUKEwiI5ab2lNnPAhXohlQKHcr8AzEQFgglMAE&url=http%3A%2F%2Fwww.fda.gov%2Fdownloads%2FDrugs%2FDrugSafety%2FUCM523499.pdf&usg=AFQjCNEH4Iw9YpDEQzq02zHI90Q1kw_t2Q&sig2=keqn8Q4rgG2BbWDLYk2oKA&bvm=bv.135475266,d.cGw&cad=rjt

So yes 4 - 8 weeks is the usual timeframe for reactivation.

Thanks Bradley for the reference. Here's the quote:

"HBV reactivation usually occurred within 4-8 weeks, 52 days on average, of starting HCV treatment. "
Title: Re: Harvoni Side effects
Post by: Lynn K on October 13, 2016, 11:04:35 pm
What a relief sounds like you are good to go Paul
Title: Re: Harvoni Side effects
Post by: dragonslayer on October 13, 2016, 11:54:38 pm
What a relief sounds like you are good to go Paul

https://www.youtube.com/watch?v=bxjb2UJZ-5I
Title: Re: Harvoni Side effects
Post by: towardhealth on October 15, 2016, 02:47:58 pm
Hello,
I began posting on this site when Harvoni was just coming on the market. I hoped I would receive treatment -my doctor had encouraged me to wait the 18 months from my diagnosis for the new medications he knew were about to become available. Unfortunately, my insurance denied coverage on three separate occasions, based on my "healthy liver".
I was frustrated, but had little recourse except to take care of my liver with diet, exercise, and optimism.

My recent Fibroscan showed an increase of fibrosis from F0/F1 to F3 since 2014.
I was stunned, to be honest, but my new hepatologist submitted an Rx for Harvoni to my insurance, and in less than a week, I received my pills.
This morning, with a slight smile and a big glass of water, I began the journey towards health.

It matters a whole lot to know everyone is here whenever I might need to reach out.
I hope I can be helpful somehow in return.
Title: Re: Harvoni Side effects
Post by: Mike on October 15, 2016, 06:01:34 pm
Hi  Towardhealth,

I'm glad to hear you are getting treatment and will most likely be cured in 90 days.

Hang in there, the journey is almost over!

Best wishes, Mike
Title: Re: Harvoni Side effects
Post by: brie41 on October 15, 2016, 06:37:30 pm
Hi Toward Health,

  Best of luck to you as you start your journey with Harvoni.  It is a very tolerable treatment for most of us, so I hope it will be the same for you.  One day at a time and drink plenty of water!!  Brie
Title: Re: Harvoni Side effects
Post by: KimInTheForest on October 15, 2016, 06:41:00 pm
Hello,
I began posting on this site when Harvoni was just coming on the market. I hoped I would receive treatment -my doctor had encouraged me to wait the 18 months from my diagnosis for the new medications he knew were about to become available. Unfortunately, my insurance denied coverage on three separate occasions, based on my "healthy liver".
I was frustrated, but had little recourse except to take care of my liver with diet, exercise, and optimism.

My recent Fibroscan showed an increase of fibrosis from F0/F1 to F3 since 2014.
I was stunned, to be honest, but my new hepatologist submitted an Rx for Harvoni to my insurance, and in less than a week, I received my pills.
This morning, with a slight smile and a big glass of water, I began the journey towards health.

Congrats on starting treatment today! You will be done before you know it, and in all likelihood cured. :)

About your Fibroscan rating moving up from F0/F1 to F3 in just 2 years. It is possible that your fibrosis did increase that much in 2 years. But it is also possible that the differences in numbers are due to the vagaries of the fibroscan technology itself. It is accurate at cirrhosis (F4), so they say. But not very reliable below that. My first fibroscan was done 5 months before treatment. I was F3. My second was done 3 weeks before treatment and I was F2. Different machines in different clinics with different operators. Results can also be affected by whether you've eaten recently or fasted, whether you are experiencing a spike in ALT (inflammation) - even what position they test you in.

best of luck with the treatment,
kim

Title: Re: Harvoni Side effects
Post by: Grateful Gmom on October 15, 2016, 07:12:08 pm

This morning, with a slight smile and a big glass of water, I began the journey towards health.

It matters a whole lot to know everyone is here whenever I might need to reach out.
I hope I can be helpful somehow in return.

I also started this morning with my husband. I was approved for 8 weeks and him for 12, most expensive breakfast ever!! Definitely feeling some effects, but if this is as bad as it gets, I'll be fine.
Title: Re: Harvoni Side effects
Post by: FutureThinker on October 15, 2016, 07:15:44 pm
TowardHealth and Gmom -- Congrats to you both!! The Harvoni Train has been a pleasant ride for most of us, and the journey whizzes by before you know it.

Gmom, you're absolutely right about the cost of that breakfast!! Let's hope there is a change in that cost in the near future, in order to make this treatment more available to all those who need it.

All the best to you and keep us posted -- Drink your water and stay positive! The future is bright, FT
Title: Re: Harvoni Side effects
Post by: Mugwump on October 16, 2016, 09:13:54 am
Hello to those who are just starting this journey. Hope you find a new lease on living. What helped me the most was changing my attitude toward living during treatment. Most importantly, I stopped thinking of myself as a cripple who had a lower quality of life and did things that I had given up hope of ever doing again.

My energy levels were very low and cirrhosis had made it so even slight levels of activity were becoming a chore. I suffered from dehydration and constant muscle pain from cramping. Suddenly having freedom from the debilitating effects of HCV caused cirrhosis is a life changing experience.

I was F3 for at least 10 years before being diagnosed as F4 in 2012 so the slow decline to end stage cirrhosis made it so I became accustomed to being very sick all the time.

Like others have said the treatment will whiz by. Before you know it you should start to feel the effects of having a liver that works properly and it is marvelous!

Cheers
Eric
Title: Re: Harvoni Side effects
Post by: towardhealth on October 16, 2016, 04:28:35 pm
Mike, Brie, FutureThinker: & Eric: Hi! & thanks for the greetings and encouragement!

Kim: Thank you for your input regarding the Fibroscan.. my 1st was done in Boston two years ago and only one section of my liver was "scanned". It was over and done within a few minutes. I've since moved to San Francisco and here the scan was much more comprehensive-- several readings were taken of several sections of my liver.
Both times I fasted. So, you're on point with the variables involved in this new technology. Bottom line is I'm thankful I have finally qualified for insurance coverage.

Grateful Gmom:  yay! Here's to a reclaiming our healthy livers during the course of this treatment. Day 2 for me and I'm doing well. Drinking water all day long to stave off possible headaches is working so far. Best to you and your husband.

Title: Re: Harvoni Side effects
Post by: tbrown1203 on November 29, 2016, 12:09:13 pm
I'm seeing a lot in this thread regarding diet.  Are we supposed to be following a diet of some sort.  I only know I am supposed to not have alcohol.  Please share your thoughts, etc. 
Title: Re: Harvoni Side effects
Post by: Lynn K on November 29, 2016, 12:35:29 pm
There is no special diet required if you do not have cirrhosis. If you have cirrhosis you should avoid salt.

As far as a diet for treatment again you don't have to do anything different except maybe keep up your water to the old 8 glasses a day you should be drinking anyway and to use caution with antacids like Tums or PPI's like Prilosec as those can interfere with the absorption of the some of the hep c medicines depending on which one you are taking.

This thread is a lot about those who have experienced negative effects which they believe were from treatment and measures they have used to help heal from those negative effects. But if you feel fine and dont have cirthosisyoi don't really have to do anything different if you don't want to.
Title: Re: Harvoni Side effects
Post by: tbrown1203 on November 29, 2016, 12:46:15 pm
I do have cirrhosis, but I do feel amazing.  Other than headaches on occasion.  Probably from not enough water.  So I just need to lower my salt intake?  I am trying like crazy to eat healthy any how.  I think I have put my poor body through enough with drugs and alcohol. 
Title: Re: Harvoni Side effects
Post by: Lynn K on November 29, 2016, 01:35:55 pm
You should discuss this with your doctor as you do have cirrhosis.

I was diagnosed with cirrhosis 9 years ago and what I have learned from my doctor because I have some edema and ascities I should limit sodium intake (ie salt and contained in many preservatives) to less than 1200mg/day. I also have been taking a duretic to help with the edema. Other than that google a heart smart diet from the American Heart Association. A heart smart diet is also a liver smart diet. Basically what everyone should be doing more fruits and vegetables avoid sweets and processed foods plus maintain adequate hydration the 8 glasses of liquids a day.

Plus getting exercise as tolerated 30 minuets a day.

Nothing earth shattering just what any medical person would suggest to any patient with or without cirrhosis.

Good luck
Title: Re: Harvoni Side effects
Post by: Mugwump on November 29, 2016, 03:54:50 pm
I do have cirrhosis, but I do feel amazing.  Other than headaches on occasion.  Probably from not enough water.  So I just need to lower my salt intake?  I am trying like crazy to eat healthy any how.  I think I have put my poor body through enough with drugs and alcohol.
I cook institutionally for seniors. What one must consider is the fact that canned good, prepared sauces, packaged goods like potato chips all can contain large quantities of salt.
In general when you work with stuff that is commercially prepared, especially things like soya sauce you are are adding huge amounts of salt without knowing it.

By and large because of this unfortunate fact Americans in general do not have a clue as to how much salt they actually consume. People order from a greasy spoon that delivers chicken chow main and then proceed to reach for the soya sauce packets! FOR CRYIN' OUT LOUD then we wonder why there is an epidemic of fatty liver and heart disease.

ONE make sure that food that you order comes from reputable places that tell you how much MSG and salt they use!

TWO try to cook everything with very little salted butter or products that contain large quantities of added salts.

THREE search out and get used to using low sodium products.

FOUR if you follow this advice then you will very quickly find that your taste buds will actually start to improve and you will start to stop craving extra salt on everything you eat.

SODIUM in many forms is in food naturally and is part of the flavour components of food in general without adding it. You will be amazed at how wonderful real food actually tastes after weaning yourself off the commerical crap that passes as food!

But enough of a rant.

Yes this web site could benefit hugely from a separate section with the title Healthy "Eating for the Liver" or something similar.

Now that I have dismounted my high horse, I will tell you that falling off the wagon and eating a bag of potato chips with enough salt in it to mummify King Tut is not a bad thing if you then compensate with exercise and water. The problems come when the buttered and salted tasty sweets and goodies are always on the coffee table and the potato is on the couch!

Salts are necessary in many forms and is part of a natural human diet. We have over done it with the overconsumption of sodium chloride that is all there is to it really. Salt and refined carbohydrates are the only reason why the fast processed food industry is evil because salts and refined carbohydrates become addictive the same as caffeine. As I suck on my Starbucks with extra sugar to compensate for the excessive level of roasting they use :o :o :o

Cheers
Eric   
Title: Re: Harvoni Side effects
Post by: Deniseandrick on December 27, 2016, 02:11:53 pm
My husband has been on harvoni for about a week. The cost for 84 tablets was $91,000. Medicare paid part and left us with a $27,000 copay. The patient Access Network paid 15000 and I honestly don't know where the rest came from. But we had zero co-pay for which we are very grateful. He is getting sick now, headaches and nausea and takes several naps daily. Having had quadruple bypass 2 and a half months ago I didn't know if these issues were lingering from the surgery or from harvoni however based on what I am reading it seems to be harvoni.
Title: Re: Harvoni Side effects
Post by: gnatcatcher on December 27, 2016, 05:25:35 pm
Denise, I'm sorry your husband is experiencing side effects. If one of the things you are reading is the prescribing information booklet that came with the bottle, you've seen that fatigue, headache and nausea were the most frequent side effects reported during the clinical trials. Headaches can often be lessened by drinking more fluids: urine should be pale yellow (darker means more fluid is needed). Side effects can come and go during the 12 weeks, so I hope Rick will soon have better days.

Welcome to the forum, and may 2017 be Rick's year of much better health!

Gnatty
Title: Re: Harvoni Side effects
Post by: Deniseandrick on December 28, 2016, 05:11:36 pm
I don't know what your financial situation is of course but you might consider going to patient access network organization.  It is PAN. org for short. If your income is less than 400% of the federal poverty level you will automatically qualify for a $15,000 Grant toward your medication.
Title: Re: Harvoni Side effects
Post by: sharrie g on January 13, 2017, 12:55:57 am
hi I am new here just joined today I am in the middle of my 3rd month on a six month treatment I really haven't had any side effects from this medicine. I feel very uneducated about my condition compared to you guys I don't have a clue what geneotype stage or anything like like alls I know is my doctor told me I had hepc and very minimal chirosis but I go to see him in a week and you cant bet I'm gonna find out sorry everyone is having side effects but it makes me wonder why I'm not having any last time I went to the doctor he told me my virus was almost undetectable it was at 5 and I have no clue what that means but I would like to thank all of you for opening my eyes to how uneducated I am on this but I will learn ty and god bless
Title: Re: Harvoni Side effects
Post by: Mugwump on January 13, 2017, 01:23:51 am
hi I am new here just joined today I am in the middle of my 3rd month on a six month treatment I really haven't had any side effects from this medicine. I feel very uneducated about my condition compared to you guys I don't have a clue what geneotype stage or anything like like alls I know is my doctor told me I had hepc and very minimal chirosis but I go to see him in a week and you cant bet I'm gonna find out sorry everyone is having side effects but it makes me wonder why I'm not having any last time I went to the doctor he told me my virus was almost undetectable it was at 5 and I have no clue what that means but I would like to thank all of you for opening my eyes to how uneducated I am on this but I will learn ty and god bless
Don't feel bad about not knowing all the details of what HCV can do or what can happen to some who undergo treatment. And a big welcome! Sometimes I wish that I could have just ignored all the niggling details.

But then again I failed at interferon treatment and having a miracle happen by reaching a cure was hard for me to wrap my head around. In 2013-14 I was at a stage where I had given up all hope of ever seeing a day without HCV slowly eating away at my liver and the quality of my remaining life!

If you are on 24 week treatment with Harvoni it must be because you have either been treated before with no response or you have liver damage with a very high viral load. What I will say about treatment is that some of us suddenly had a huge boost of energy during treatment as our liver functions normalized. Treatment seems to effect everybody differently. And as you have seen in this thread some have had minor side effects while others have had a very hard time.

Keeping your chin up and being kind to yourself and everyone around you seems to be the best medicine to get over this or any disease. I know it was the smile and tears of joy in my wife and daughter's eyes when I told them I was cured that helped me more than any medicine could to relieve the strain that this disease has brought upon us all.

All the best in a future free from HCV
Eric
Title: Re: Harvoni Side effects
Post by: Lynn K on January 13, 2017, 05:45:24 am
Hi Sharrie

Just wanting to confirm what Eric is thinking are you taking Harvoni?

If not do you know the name of the medicine you are taking?

Have you treated in the past?

Really most people have minimal side effects although we do have some people here who have had a difficult time with treatment. Most people have the same experience as you.

I just had a couple of mild headaches and whether they were from treatment or I just had a headache for no particular reason who knows

Best of luck to you
Lynn