Harvoni Side Effects (Page 31) (Top voted first)

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

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

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I have the FDA reports that show a number of side effects that are not listed on the dispensing brochure and are unknown to doctors. This is a new medication and NOBODY can say what is or is not a side effect. Everyone responds differently. We have be test subjects. I have read the FDA reports and people are experiencing many, many, many side effects that have not been released to the public.

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I also have the FDA reports for the last 18 months, and while I never counted exactly how many different side effects have been reported, it is roughly 30-35. A lot were different types of pain from annoying to debilitating. Many reports of heart/chest pains, lung infections, sleep problems both too much and none at all, blood pressure problems, at last count 17 deaths, and many more. The interesting fact is most claim these side effects continue after treatment has been discontinued. I am not saying this to convince anyone to stop or continue treatment, just we ALL need to push both FDA and Gilead to publish all the possible side effects so one can make an informed decision whether to take our not.

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I am into my 5 th month of using Harvoni and have been having pain in the middle of my back for the past month. Over the last 3 days it has moved into my lower back and has kept me awake at night and I am finding it difficult to walk today.. should I stop taking Harvoni?

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Thank you all for your concern I was rushed again to the hospital this time my foot swelled up the size of a football and no one can tell me what's wrong. They tell me my blood work is fine they tell me that there's no blood clots they can't understand why my joints are swollen does that no one can understand it. And I'll tell you what it's the harvoni. Plain and simple it's the harvoni the pain in my back my lower back down my leg my joints they're all so bad it's killing me I can't even walk my right foot is the size of a football and no one can figure out what it is causing it. None of these issues I had before using harvoni. I feel sorry for people like me and for people like Sady59 looking for answers that we cannot give. All I can tell you is if I had to do this harvoni treatment again I would never do it. Never ever again the side effects I'm having post-treatment are worse than the ones I was having during the treatment although the ones during the treatment were quite bad as well. I should also mention that I'm having severe memory loss issues as well as headache issues as well as being so tired it is unbelievable I just don't know what to do anymore because when your doctor says your blood is ok there is no blood clot after doing an ultrasound and we don't know why your foot is swollen what am I supposed to do I can't even walk on my foot so I am at a complete loss. Billy should be ashamed of themselves and so should the FDA. I really am so depressed over all of this it's ridiculous. So if anybody asks for a recommendation I would certainly be negative but I would never tell anybody to start or stop based on it but I can tell you that the side effects I'm having her brutal I just cannot even tell you how much I wish I would just go to sleep at night and not wake up because I can't keep feeling this way it is just not fun my hands are so sore typing this is killing me. Anyway I wish Sady59 the best of luck as well as everybody else going through this

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Gilead should be held accountable for purveying this poison and not revealing the full extent of side effects.
Can they be sued as other Pharma Co's have been?

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I'm on my last two weeks of Hatton and have been dealing with what I thought was a kidney infection.
So I went to ER to check it out they found nothing, it was normal all the down the list. But viral load was 0 at 4 weeks.
What is not so funny is that it was a UTI that kick the virus into high gear. Which did not help my cirrhosis.
I though I would start treatment with a UTI and end with a UTI.
It is important to check on the side effects being a relatively new drug, little is known about the long term issue.

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Danny, one comment, Harvoni is not an antibiotic so it should have no effect on a uti. However as you point out Harvoni is a very new drug so nobody really know what effects it can have on other bodily systems.

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I am aware this it not an antibiotic and certainly not taking it for a UTI and at that time never associated it with a UTI just thought I had a mother UTI. I only thought that it have some time to do with the pain I am feeling in the area of my kidney just the right side when ER Doctor did not fund any issues in my kidneys, it may be a stone. Any I dint thunk that even if it was a know side effect it would not have stop me from taking the Harvin.
It's simple the benefits out way the risk
Thank you for the reply I honestly did not think anyone would even read

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It seems that there is a lot of people with issues about harvoni.
But happily that's not what I'm going on about
Its my auto correct, in my last post I apparently was not watching well it changed harvoni to Hatton and a few other small changes that I just let go.
I hope harvoni is not responsible for all of side effects I have read, I all so hope that should it be found that harvoni is the cause that Galead or any company licensed to manufacture it for those who have had to reach out for generic brands well step up correct and we'll compensate those that have had extreme issues.
Bless you
Many thanks to keithn8eb

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Maryann
I could not agree with you more, I was talking with my wife about that very same thing just this morning, as my doctor referred to me as pre Trans plant.
I have had back pain sense 1983 the added issues seem small compared to the alternative

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Thank you Vanessa, I will not and would not dismiss anything at this point, while you're right I dont have HIV first you have to have the energy for intercourse and a partner and you have to have the strength and desire, I have none of those things. My mind is a shell of what it was prior to the treatment. I have had all the HIV tests, I have had all the blood tests and strangely the only abnormalty is my potassium level which is a little low, very little which is strange simply because I make myself eat banannas as well as make myself drink strawberry, bananas, mango and pineapple homemade shakes in the blender trying to eat and drink as many fruits and vegetables as possible, steamed and raw so I get as many as the nutirents as possible... I really hope that they find out whats wrong but I worry because when doctors first deny, then do tests after seeing some of the issues like the swelling first hand then scratch their heads and say I dont know, I just know it isnt Harvoni, how can an intelligent doctor, how can any intelligent person say I dont know what it is, but, I know its not Harvoni or this or that, I dont get it. It's the only thing, the only thing newly introduced to my body. I understand people get sick but there is always a cause. Why is there no cause in my case? Why couldnt it be the Harvoni, my diet, my prescriptions, my daily activities. EVERYTHING ELSE besides Harvoni has remained the same for the last 20+ years. I wasnt a drinker or a drug user. I have always drank my fruit shakes, I dont get it... My liver was good before starting Harvoni, that's why they told me I was a perfect candidate for the drug. Okay now fix me I am broken down, depressed and sick, and mentally my mind is shot. Thanks Vanessa I will give that a try, I would try ANYTHING to feel half better than I do now. Thanks again.

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Thank you Enoughalready I will ask my doctor to check these all I can do is ask and hope that she will, she seems not to want to listen to anything I say, its like I have no clue or reason to feel crappy or be swollen like I am.. Thank you I am and will try and ask for any and every thing possible with the hopes of feeling even just a little better.. Thank you Enoughalready

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