Author Topic: Harvoni Side effects (Read 2190244 times)

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

Bucky · « **Reply #1 on:** October 25, 2014, 03:13:23 pm »

Quote from: 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

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

Bucky · « **Reply #2 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

art1951 · « **Reply #3 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

Bucky · « **Reply #4 on:** October 26, 2014, 11:23:44 am »

Quote from: 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

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

2Blave · « **Reply #5 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

BattleTheBeast · « **Reply #6 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

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 ~

art1951 · « **Reply #7 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

lporterrn · « **Reply #8 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!

art1951 · « **Reply #9 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?

lporterrn · « **Reply #10 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.

FRED220 · « **Reply #11 on:** October 28, 2014, 05:47:41 pm »

Hello Lucinda, besides headaches what other sides did you have?

bb23 · « **Reply #12 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

lporterrn · « **Reply #13 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.

art1951 · « **Reply #14 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

bb23 · « **Reply #15 on:** October 29, 2014, 01:21:21 pm »

Quote from: 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

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.

art1951 · « **Reply #16 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.

bb23 · « **Reply #17 on:** October 29, 2014, 02:06:34 pm »

Quote from: 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.

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?

art1951 · « **Reply #18 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.

bb23 · « **Reply #19 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.

Butterfly2014 · « **Reply #20 on:** October 30, 2014, 12:54:47 am »

Quote from: 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

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

art1951 · « **Reply #21 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.

Butterfly2014 · « **Reply #22 on:** October 30, 2014, 03:22:43 pm »

Quote from: 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.

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 :-)

art1951 · « **Reply #23 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

goodbyehepc · « **Reply #24 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!

Bucky · « **Reply #25 on:** October 31, 2014, 07:06:51 pm »

Quote from: 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!

Welcome and congratulations on getting Harvoni.
Keep us posted,
Bucky

art1951 · « **Reply #26 on:** November 01, 2014, 11:34:49 am »

Quote from: 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!

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

goodbyehepc · « **Reply #27 on:** November 01, 2014, 11:55:38 am »

Quote from: art1951 on November 01, 2014, 11:34:49 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!

art1951 · « **Reply #28 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

goodbyehepc · « **Reply #29 on:** November 01, 2014, 12:36:02 pm »

Quote from: 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

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.

goodbyehepc · « **Reply #30 on:** November 01, 2014, 12:37:29 pm »

Quote from: 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

BTW do you feel like your appetite is somewhat curbed from Harvoni?

art1951 · « **Reply #31 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.

goodbyehepc · « **Reply #32 on:** November 01, 2014, 01:08:27 pm »

Quote from: 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.

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.

art1951 · « **Reply #33 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.

sunrise · « **Reply #34 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.

art1951 · « **Reply #35 on:** November 02, 2014, 10:09:26 am »

Quote from: 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.

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.

sunrise · « **Reply #36 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.

goodbyehepc · « **Reply #37 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

art1951 · « **Reply #38 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

goodbyehepc · « **Reply #39 on:** November 02, 2014, 06:26:41 pm »

Quote from: 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

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

Mike · « **Reply #40 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

goodbyehepc · « **Reply #41 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

art1951 · « **Reply #42 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

goodbyehepc · « **Reply #43 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. :-)

bb23 · « **Reply #44 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

art1951 · « **Reply #45 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

goodbyehepc · « **Reply #46 on:** November 04, 2014, 12:12:02 am »

Quote from: 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

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

bb23 · « **Reply #47 on:** November 04, 2014, 01:43:47 am »

Quote from: 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

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.

bb23 · « **Reply #48 on:** November 04, 2014, 02:16:59 am »

Quote from: goodbyehepc on November 04, 2014, 12:12:02 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.

goodbyehepc · « **Reply #49 on:** November 04, 2014, 09:10:39 am »

Quote from: bb23 on November 04, 2014, 02:16:59 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.

art1951 · « **Reply #50 on:** November 04, 2014, 09:39:33 am »

Quote from: bb23 on November 04, 2014, 01:43:47 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

bb23 · « **Reply #51 on:** November 04, 2014, 01:43:53 pm »

Quote from: art1951 on November 04, 2014, 09:39:33 am

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

bb23 · « **Reply #52 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.

art1951 · « **Reply #53 on:** November 04, 2014, 03:28:52 pm »

Quote from: 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.

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.

bb23 · « **Reply #54 on:** November 05, 2014, 06:13:24 pm »

Quote from: art1951 on November 04, 2014, 03:28:52 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.

bb23 · « **Reply #55 on:** November 05, 2014, 06:23:19 pm »

Quote from: goodbyehepc on November 04, 2014, 09:10:39 am

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.

goodbyehepc · « **Reply #56 on:** November 05, 2014, 08:01:40 pm »

Quote from: bb23 on November 05, 2014, 06:23:19 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....

JoeK9999 · « **Reply #57 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?

goodbyehepc · « **Reply #58 on:** November 06, 2014, 03:58:14 pm »

Quote from: 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?

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?

JoeK9999 · « **Reply #59 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.

goodbyehepc · « **Reply #60 on:** November 06, 2014, 04:33:53 pm »

Quote from: 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.

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!

sc1984 · « **Reply #61 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. :/

sc1984 · « **Reply #62 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).

JoeK9999 · « **Reply #63 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.

art1951 · « **Reply #64 on:** November 07, 2014, 08:22:50 am »

Quote from: 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. :/

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

JillLynn · « **Reply #65 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!

Cbrunette · « **Reply #66 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)

goodbyehepc · « **Reply #67 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!

JoeK9999 · « **Reply #68 on:** November 07, 2014, 08:03:46 pm »

Quote from: 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)

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.

goodbyehepc · « **Reply #69 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

JoeK9999 · « **Reply #70 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.

goodbyehepc · « **Reply #71 on:** November 10, 2014, 01:07:51 am »

Quote from: 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.

That's great to hear and something to look foreword to!

Cbrunette · « **Reply #72 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.

Dandelion · « **Reply #73 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

Mike · « **Reply #74 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

Johnny_Wayne · « **Reply #75 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.

daleb0411 · « **Reply #76 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.

Bucky · « **Reply #77 on:** November 12, 2014, 10:49:18 am »

Quote from: 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

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

art1951 · « **Reply #78 on:** November 12, 2014, 11:20:07 am »

Quote from: 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.

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

JillLynn · « **Reply #79 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.

art1951 · « **Reply #80 on:** November 12, 2014, 01:34:00 pm »

Quote from: 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.

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.

fllazylady · « **Reply #81 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

fllazylady · « **Reply #82 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...

Mike · « **Reply #83 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

fllazylady · « **Reply #84 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....

BattleTheBeast · « **Reply #85 on:** November 13, 2014, 07:35:58 am »

Quote from: Mike on November 12, 2014, 06:50:33 pm

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~

bb23 · « **Reply #86 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

Payson6 · « **Reply #87 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

lporterrn · « **Reply #88 on:** November 14, 2014, 01:49:22 pm »

Welcome Payson6. Hope your treatment goes easy.

JillLynn · « **Reply #89 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.

lporterrn · « **Reply #90 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.

JillLynn · « **Reply #91 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.

fllazylady · « **Reply #92 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

goodbyehepc · « **Reply #93 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

BattleTheBeast · « **Reply #94 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~

goodbyehepc · « **Reply #95 on:** November 16, 2014, 03:35:13 pm »

Quote from: 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~

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?

JoeK9999 · « **Reply #96 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.

magicpill · « **Reply #97 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.

art1951 · « **Reply #98 on:** November 17, 2014, 08:40:00 am »

Quote from: 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.

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

mario555 · « **Reply #99 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.

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