Harvoni Side Effects (Page 12)
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I have been taking Harvoni for 3 months now and am having nerve pain in my legs and lower back pain. Is anyone else taking Harvoni having any of these same side effects as me? Please help if you are able. Thank you

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I took the Havrvoni also and no that is not one of the side effects

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I only recommended finishing because it seems like once you have side effects stopping treatment early doesnt' stop the lasting side effects. It only means your now sick and still have Hep C. I agree that you have to decide for yourself to start or not. But what if your liver status is dangerous? Sometimes people have to treat and deal with the lasting effects because otherwise they will have the last of their liver functions taken away from Hep C. There is a balance here to consider.

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For anyone recommending someone to continue the medication, it is not your business. You are not a doctor, not that they know much about this drug at all except they get paid by Gilead. Look it up. There is a website that shows how much they are getting paid from each Pharmaceutical company. There is potential if someone stops before completing treatment, they will heal. It may take time but that can happen. You have no idea what others are experiencing and there are many deaths reported by those who were healthy to start with. The longer you take this poison, the more damage it will do to your body. Enough said.

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I have to agree with most people on here, I wish I'd never heard of Harvoni! I made it 4 1/2 weeks and decided my life was better living with HepC than the cure. I HURT everywhere!!! Couldn't walk, No Energy, started taking it at night cause I wasn't sleeping at all.
I keep wondering if we all aren't still part of the study?? If your cured , Why all the testing months and years after? I really believe they don't know if it works long term... If it really cures? ..or like cancer comes back? .... I did Interferon injections 19 years ago and while on them my levels dropped, so it was working.... But as soon as I ended treatment it was back ... Had flu like symptoms EVERY day after following the injections, for a year. Was able to work through the treatment. Granted I was only 36 at the time and single mother of 2 (9 yr & 2) it didn't make me as sick as Harvoni. I have been off Harvoni for 6 weeks now and I still don't have my energy back. My left leg with the knee replacement doesn't buckle anymore but I now have Rheumatoid arthritis... Joints are super achy, EVERYTIME I stand up!! I have issues that I can't explain, food doesn't taste right anymore, I'm having to take pain medication just to function... It's small doses cause I don't tolerate strong meds,and they make me depressed, which is also worse since being on Harvoni. I've been getting random pimple like sores on my body, mostly my head?
Ultimately it's up to each individual user whether you want to continue to put up with the side effects of Harvoni or not? If I had known ALL the side effects, I would have thought twice before taking it. Knowing now that it effects joints/bones, I would not have done it. My GI Dr should never have even suggested it to me, with my hip and knee replacements. Knee was still in the healing process, had only been 2 1/2 months since surgery. Total set back! I wish everyone luck who continues. I couldn't do IT, and I'm still not feeling well after stopping.

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Jenny, I truly believe that's one of the hardest issues about taking Harvoni having been told that the side effects were minimal. Further, some of us had absolutely no support or counseling from the medical community when we started becoming ill from Harvoni. I think this will change and, at least, those who take these drugs will be informed and supported. The side effects of Harvoni cannot be hidden any longer. Gilled has to be transparent and so does the FDA. I don't know when that will happen.

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Christine something to consider..... you already went this far, I would finish it. Some that stopped due to pain had it long term anyway. But never finished treatment, so basically nothing to show for it. I would at least finish it. So you can be free of Hep C. I don't think it will matter at this point. Your already having the pain. I would take my pill at dinner time and be on the couch relaxing everynight. Yes I had pain but I slept the best I ever slept in my life on Harvoni. I felt drugged the whole treatment.

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Thank you for all your responses. I feel like Ive been lied to about this drug. I was told it had very minimal side effects and no long term side effects. Im beginning to wonder if I continue if the pain may never go away and if i will have to live with that. I have only had Hep c for about 6 years now. I jut saw my doctor this morning because of the pain and he said he did not know and would have to call the drug company. He gave me a list of what he has for side effects and it lists "myalgia" as being seen in less than 3% of patients, but no more information n the subject or if it may be long term. i am really glad to have found this forum, as Ive been told the last year that this is a miracle drug with very little side effects and I could not wait to start. But last night I found myself on my couch at 6pm, feeling like id been hit by a bus, unable to move, so tire and drained. Yet I cant sleep. and the pain i feel in my body the first 5 hours after I take it is so unbelievably uncomfortable, if I stop moving it hurts even more. I guess I have a lot of decision making to do on whether to continue or not.

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Is there any data anywhere that comments on the criteria for bad sides (i.e. male/female, weight, perhaps less if certain supplements taken/not taken etc). I've been offered Harvoni and am on a waiting list. Don't want to touch it after reading all your negative reviews here and many others. I have a feeling any drugs coming after Harvoni inc. epiclusa will just offer more of same, at same time I want to be free of hep c, which I've had for 35 years. Difficult one.

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Hi Christine,

I really feel for your dilemma. I faced the same decision when one week in I had severe side effects. They were different to yours but I knew that I was in for a completely different experience than what I had prepared for. I agree with Maryanne and the others that it is dependant on medical factors that you must weigh up yourself. Could you do as your doctor suggested and give it a week? It is early days for you. In that week could you seek counselling from your local Hepatitis foundation or something like that? Become a nuisance. Knock on doors to seek support to make this massive decision. I have written here how I regret taking it but I also wonder if I would have regretted going off it. Its a lonely and important decision. Seek support. Get informed. Then you can make sure that whatever you decide will be right for you. Feel free to write again.

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I love Epsom salt baths too but it's magnesium and not allowed with harvoni.

I'm on week nine of 12 and undetected since week four.

Back pain started week eight. Nausea entire time.

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Christine you need to base your decision to continue with the treatment on how badly your liver is damaged from Hep C and how long you have lived with Hep C. I would rather suffer the side effects than die of liver disease. But many don't have much damage that treat. I was in pain so I guess I would have still done it. Even though I live with chronic pain now. At least the Hep C is stopped.

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Christine, this is as good of place to post as any. I had HepC for approx 37 years and tried all the other treatments. Like you I saw 98% cute rate and just very minor side effects. Some people seem to have only minor side effects, but others like me felt like death warmed over while taking it and after finishing treatment (almost 16 months now) other problems pop up and my many doctors have no idea why. There is only one good thing I can say for Harvoni and that is after 16 months and 5 rna tests I am still HepC free. Me? I wish I never heard of Harvoni. But I believe each person has to make their own decision whether to take it or continue. The word is slowly coming out that there are other side effects than Gilead will admit to, so think about and make your own decision.

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I started feeling a little better after 3 months (on Harvoni for 6 months).

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Christine, All I can tell you is that there are a lot of side effects. Your body hurts for a reason. It is speaking to you to tell you something is not right. Many of us are suffering long term damage after taking this drug. It is a difficult decision to make...get rid of Hep C or potentially have worse problems in the long run. Personally, I wish I had never taking the drug. Many have long term pain and are now on medications for that as it may not go away when you stop taking Harvoni. Best of luck.

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I don't know where to post this but Ive been googling for the last 3 days. Just started Harvoni Friday morning and it HURTS. Like my bones hurt. My arms especially. Ive had stomach issues and headaches but nothing compares to this deep pain on parts of my body My doctor told me to see if it goes away after a week. I'm honestly surprised at how many side effects there are to this drug when i was told there was very minor side effects like head ache and fatigue. i really want my Hep C gone, but I dont know if I can handle months of this. From the sounds of it, it doesnt get any better. is it really worth it? Anyone have any ideas on what the pain is and how to help it? Sorry again if this was an innapporoprite place for this post.

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Yes the Gilead site has limited and misleading information. Headache and fatigue are NOT the only side effects and even those are not temporary....being 18 months post treatment, I should know as I along with many others have long term damage. There have been a number of completed suicides reported to the FDA as well as suicide ideation and just too many other horrible things to list here. These side effects can be deadly and pharma nor the FDA nor even your physicians are not talking. Take care everyone!!!

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I suffered terribly on treatment, severe GI issues, head aches, night mares, sleepless nights from back, hip, feet pain, nausea, vomiting, you name it that is what i got was 12 weeks of living hell in bed unable to do anything. Now post tx the GI issues are tolerable, but the joint and muscle pain in intense requiring me to take a narcotic to be able to get to sleep. I went into this tx with low back issues but not my whole body. If I had researched the side effects? Not so sure I would do this again. So far I am undetected since 4 weeks in so I am 99% sure that I am cured of hep c genotype 1a...but holy kamoli, I had no idea I would feel like crap for so very long. Let alone the damn side effects not listed that Gilead and the FDA refuse to acknowledge....this is beyond ridiculous.... seeking empathy.

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Hey I'm Lisa. I'm thru with Harvoni but got pancreatitis from Harvoni. The doctor at the hospital wanted me to stop but I am stage 4 Liver Disease with cirrhosis of the liver. Now I have cysts on my kidneys and had no idea if the Harvoni caused it but I feel worse Now than I did before taking Harvoni. We are there long term data and that really concerns me. My liver doc says I will always test positive for hep c. I think they want me to keep this as my medical history so they will have access to me for the long term data for Harvoni.

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Hi Marie
I am in week 12 of Harvoni and the ringing in my ears started at week 11. Its a dreadful feeling. Are you finished treatment ?

I am at the point where I do not trust this drug anymore AT ALL. I dont think I could even list what I have been through in the last 11
weeks. I am angry. I signed up for a slight headache and now I fear for my current and future health which is EXACTLY what I was trying to avoid by taking Harvoni. If they knew nothing about the side effects they had a responsibility to tell us that. I would not have risked it.

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I also have ringing of the ears after 3 months on Harvoni and blood test with high RA!

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