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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.