Harvoni Side Effects (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 finished an 8 week course of Harvoni last day in March. Prior to treatment I did research the 2 products, especially carcinogenic studies. One of the ingredients is still "being tested" which spelled trouble to me but I had waited 35 years for a treatment and needed to do something. All pre treatment sonograms, etc showed absolutely no liver damage, unremarkable gallbladder and pancreas .2 months post treatment showed sludge in my gallbladder ( I'm a vegan) and 3 months post treatment I now have a gallbladder cyst that is a precursor to biliary Cancer. The drugs are metabolized by Bilary system and pancreas , kidneys and gallbladder are all being impaired!! Be leary, I am starting to feel that Cancer of the biliary system could be a side effect of treatment. I will keep you updated...

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Just for the record, I am approximately 12 weeks past finishing my Harvoni and my aches and pains have finally subsided. They have been gone for about 2 weeks now. I hope everyone else's problems turn out to be temporary as well.

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I realize thy that I am posting a good year after these original posts, but I must speak up. I am 14 months post treatment, and I am virus free. However I am part of a group that developed horrendous side effects during treatment that did NOT go away when treatment ended. There are the few published side effects from insomnia to pain in many areas of the body especially the liver area but goes on to inflammation of the lungs with one death (after 2 weeks treatment) blood problems from low red cell count to blood clots. Remember that Harvoni was one of the drugs rushed thru approval because of need and they are making such an obscene amount on each pill they downplay any side effects, especially those like ours that continue well past discontinuation of treatment. Is Harvoni a miracle drug that works? Yes. However go in with your eyes open. Many in my group would rather have the HepC back.....

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Well I guess this bedridden, side effect affected man will have to settle for my SSDI. Its either that or be homeless. My 25 - 30 side effects have really ruined my life. I went from being a productive member of society to being a product of a miracle drug gone awry. I am VERY happy for those who can trudge through each day, in spite of their side effects no matter what. I can only say that I wish and pray that I may become one of them. Being bedridden is a sorry life, especially for me, I used to be productive, I used to make a very good living, now I struggle just to live. I am not speaking monitarily, I am speaking about life in general although financially my life is in ruins as well. I went from being a carrier of HepC for almost 40 years, then being told that I was a "perfect candidate" for this new life saving, life enhancing modern miracle. I went from living a fairly active life to living, just breathing, just waking up and just so upset and depressed because I cant do anything like I used to, even the simplest things like walking, seeing or even being able to feel like I am among the living... Again I am VERY HAPPY for those who have been able to get through Harvoni treatment relatively unscathed or minimally, I was not that fortunate, I cant speak to what it will be like 1, 3 or even 5 years down the road but living as I do now is not a life. When I say I have 25 - 30 side effects that's minimally. I have a foot the size of a basketball, I get SEVERE muscle spasms, I have burning in my legs, I feel like I have nails going out through my feet and legs, I have such severe sinus issues, having developed cysts inside my maxillary's (these are truly suicidal pains, no other way to describe them). I live on anitbiotics and due to the sinus issues that no one found for 71 days I have developed a lesion in my head causing me severe migraines. I could go on and list the severely swollen joints, the kidney pains, the severe lower back and nerve pains and many others including the foggy head, loss of memory and my losing my vision... These are some of what keep this lazy Veteran bedridden. I try, I REALLY try to get out of bed but its such a painful endeavor I'm in tears and pain, there is also little doubt about how emotionally and mentally depressed Ive become, no denying it, it probably also enhances my pain. But please, make no mistake I am so medically messed up now that there isnt a day that passes I wish I had said no to treatment. After all the years of being a carrier, I only had a 4.5 ( 4 1/2 million ) million count viral load, which is very little compared to many. I have no cirrhosis of the liver, I had no liver damage. I accepted the VA offer for treatment because I was lead to believe that the minimal side effects were nothing compared to potentially adding years to my life. Wow, what a mistake I made. So yes I am on disability, it's about a little less than a quarter of what I used to make annually. I went from a very secure financial existance, a very productive life and a life that allowed me to travel, now Im lucky if I can get to the head (bathroom) and back. I dont consider myself lazy, I am not one that had ever asked or sought out any help from anyone, including my parents. After contracting my HepC back in 1977, I went on to serve proudly in the Navy, married a beautiful woman who gave me a wonderful son who is 37 years old, married with 2 children of his own. My late wife, nor my son ever contracted HepC, thankfully.... I wasnt made aware that I had HepC until I was 55 years old, at that time I had a long career at a major Telephone Company up North, with new cars and a beautiful home on a good piece of land. I found out about it when my wife was diagnosed with Breast Cancer, it was a double whamy, she ill and me in double disbelief. Well unfortunately God came calling and now my wife sits by his side. During this grief and through my talks with a therapist that I sought help from, losing a wife of almost 30 years was devastating, she helped me learn how to cope, acceptance is still hard 9 years later but through my coping I decided to do this Harvoni treatment. Well all I can say is I wish I didnt, I would gladly exchange my life today for the HepC life I had a short 9 months ago.... I had no effect, no illnesses from my HepC as I explained, I guess the prospect of potentially living longer from treatment sounded too good, you know what they say about it sounding too good. Anyway I am by far not lazy. I am by far not a person who wants a free ride, all I want now is to live, yet I am or at least I feel Like I am dying slowly... I would just caution some who find it easy to say that I didnt have those effects they cant be real, for me and countless others theyre very, very real even causing families the heartache and pain associated with losing a loved one. As I stated a couple of times I am VERY HAPPY for those able to work through all of this and still be productive, for that I am envious, I wanted that very same thing. I didnt want much, just to go on with life and deal with my personal loss as well as all my personal sucesses. Now I cant even get out of bed without the serious pain and hurt which I wouldnt wish upon anybody... Just know that me and others have sufferred greatly, in so many ways. Also know I am not lazy, I had worked since I had a 40 customer paper route at the age of 12 - 1/2. I am a man who cherished his lifes achievements. Now all I am left to do is pray, pray that somehow I can find a way to exist in as little pain as possible and pray that I can find a way to get out of bed. I would give every breath of air I take to be an 8th of the person I used to be. I dont miss nor want any of the material things, I've had them and they mean nothing compared to being able to see, to walk, to be painless... So I do get bothered when someone, anyone thinks that these side effects are not real, they are. I also take it personally when someone, anyone thinks I am taking or getting a free ride. This is not the ride I would've chosen, so I am very mindfull of others and their sufferring, I am mindfull as well of those who are living the miracle, God Bless those that are. I pray for a little to help me. I, not in my wildest imagination would have ever thought that I, a man who not only worked 60+ hours a week, coached Little League, Umpired, was involved with Boy Scouts, the PTA and was a very active, loving, kind caring husband and a father, a man who was very productive could ever be the half a shell of the man I used to be..... I am not lazy, I am not looking for a free ride. However, I am grateful, however minimal it is, that it can help me while I try all things medically, mentally, emotionally and spiritually to recover from the very real side effects that have ruined my life.... I am not a weakling, nor am I unwilling to do and try all I have to in order to function again... I would only ask those who somehow can muster the strength and warewithall to function on a daily basis, that they dont dismiss people like me as lazy, free riders. It couldnt be further from the truth... Thanks and God Bless all who suffer these unexpected consequences, AND God Bless those who are the miracle of being HepC free and healthy, I strive everyday to be you.

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Hello Tony. Yes, I have been having knee pain and swollen right knee, as well as back pain. I am currently at week 11, of 12 week treatment. I was told but the treatment team, that this was not a reported side effect. Glad to hear that I am not the only one. Thanks...

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I have been having a lot of nerve pain in my legs as well as my arms and had wondered if it was Harvoni related. I am in week 10 of treatment. I'm glad to know that this is probably a side effect.

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JoeP, I am very sorry to hear all that you are going through. It is hard to advise you one way or the other on Harvoni given your situation. I can only tell you from my own experience that the side effects have been sporadic and have never been so bad that I didn't feel like I could continue on with treatment. Everybody is different, so I don't know if that is the case with other people or not. Personally I had more energy for the first six weeks or so, but I think the insomnia has caught up with me and made me more tired here at the end of treatment. I only have one more week, so I definitely feel like any side effects I have been through have been worth the result. Hope this helps!

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I am in week eight, only four weeks to go. The headaches are almost daily, as is the nausea which was stated in all I read. I have been having some real back pain but I have had back issues in the past so not sure what the story is on that one. For me there is no turning back, I will complete the last four weeks regardless of side effects. The back pain is in my lower back on the left side and it is a bit debilitating at times. This is first I have heard about back pain being a side effect. It got so bad I went to the emergency room and I have to be hurting to go there. The pain radiates (at times) into my left testicle, again strange. If it is a side effect I can deal with it, the other option is not really an option.

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Take Harvoni at night before bed and have 2 bottles of water by your side. Make sure you drink the water during the night and use the bathroom. The morning will feel tired but as day progresses you will feel much better. When you feel flush or weak drink water.

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Hi Tony,

From what I've researched, "lower back pain" is specifically listed as one of the more common side effects of Sofosbuvir (the second active ingredient in Harvoni); so I'd imagine that "leg pain" may be attributed to this drug as well.

If you'd like a more concrete reference, "back pain" is also listed as a side effect of Sofosbuvir on Pubmed at:
ncbi.nlm.nih.gov/pubmed/25422576

That said, you may want to contact your doctor if the pain becomes too bothersome or severe. This way you and your doctor can determine if Harvoni is still right for you.

I hope this helps!

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If you think you are going to get any honest answer from Gilead you are mistaken. They have minimized and continue to minimize any and all side effects. Please read our comments many of our lives have been changed forever and you are worrying about the type of water you drink? Hello!

This is a very strong drug, it affects people in different ways, if I knew then what I know now I would NEVER have allowed my doc to PUSH this on me, but that's just me. I too thought I had a wonderful doctor.

Unfortunately Big pharma is about making money, I repeat making MONEY! I wish you the best outcome but I don't think the type of water that you drink is going to matter as long as its lead free. Just the fact that many of us were stable feeling quite well other then a pain here or there are now experiencing a downward spiral that is hard for us to comprehend. Hard to accept that our docs lied to us, some didn't know I cant say all docs lied but for those of us who were pushed like now or never after living for 30-40 years are guily of gross negligence. A more insidious type by just withholding information is negligence. Think of it like a car you know the breaks are not going to work but you allow your 18 year old to learn to drive with it. The same thing only its our lives and not theirs.

Please keep in mind there IS a stigma to HEP C many docs think oh what the heck, they abused their bodies anyway, these are sub standard people, not part of the 1% we might as well exploit them, after all our intentions are good, its our JOB to clear the virus. YET THEY KNEW when asked and I ASKED OVER AND OVER AND OVER, and I was passed off to a NP so that the doc really kinda sorta wouldn't be held accountable.

Some of us have completed treatment so far with little to no sides I think men are tolerating it easer then women, maybe women are on the internet more. Who knows, its a risk you already are on it, I wish you luck but many of us would do anything to have our lives PRE HARVONI back. The anger I know permeates in my post, I am in CONSTANT PAIN and my life is spiraling downhill.

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In short. I agree with the previous post scared mum. This is a serious issue and you could benefit from more support. This medication is not for everyone. I understand its not that simple weighing up the risks. Thanks for the person who validated to continue with Harvoni in week 10 despite my misgivings. Yes I dont want to be left with the virus after all of this suffering.

Jim and Keith I agree. I drank the kool aid of a miracle cure. I also would NEVER have taken it if I had known there was even a possibility of this. I did not plan for any of this as I was told I may have a slight headache. Yeah right. This should never have been sold as a fairy tale. I went to work today totally afraid of what will happen next. Vomiting ? Fainting ? Or my favorite...incontinence. Yes that's happened too. I also have red raised welts on my skin that are are scabbing. The size of golf balls. I am afraid at this point it's not even working.

Jarred sorry for your loss. Thank you for taking the time to write to us. That was very generous. All the best for the road ahead for you and your family.

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To 550... I go to the VA and I turned down their treatment offers. I have Geno type 3 that Harvoni doesn't work on. It was something similar that supposed to be stronger. Apparently Type 3 is way more progressive than the others. I was diagnosed in '95, but was probably infected years before due to years, from '75-'95, of IV drug use and tattoos. I was on Interferon for 18 mos. that began in '95. I'm doing fairly well at 63, raising my 13 yr. old granddaughter and I don't have to work because I draw my husbands SS or Widow's Pension, so that helps. I do not seem to have any energy but I'm still here and not in a lot of pain. After reading all of these negative remarks I've just opted out of the treatment. I don't feel 20 but I don't feel at deaths door either. I pray about it and Thank God for my healing. I also pray for each of you who are going thru this terrible pain and all these side effects. I hope there are better days ahead for us all. Stay strong as possible and as positive as possible.

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Very helpful Thank you so much. The doctors all tell me the same thing "Keep Taking It or it will come back the hepC." No matter what I tell them they all want me to stay on .

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I recently was approved to start using Harvoni. The Dr. has never told me what my viral counts are and they say I may experience some headaches & some heartburn. After reading some posts from Harvoni patients, I see its a little more than just that.Do I have some fears that other side effects will occur....... yes. I dont feel I can handle more set backs, my energy is low & pain level is about a 6-7........You see I'm in my 2nd. mo. of re-cooperating from cancer surgery and dealing with a colostomy & 2 deep muscle flaps in my butt.

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I took Harvoni for the 12 week program with no side effects and the virus is undetected. The doctor follows up with blood tests for quite awhile. I just hope it stays undetected. I too got nerve pains in my legs after the Harvoni. I took my last pill on the 24th of May. I went to a Vascular doctor because I didn't know what the problem was. He said my veins were fine. I suspected the Harvoni and now that I hear someone else complaining of the same problem, I'm thinking maybe it IS the Harvoni. My legs are getting a little bit better the last 3 or 4 days, so I hope it goes away. Maybe yours will too.

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CAROL, JAMIE: Thank you for the information. I do think I will wait on trying to get on this Harvoni. I am not having symptoms, at least I don't think I am. Just fatigue, but that can be from other things, like my fibromyalgia and the fact that I need to lose 30 pounds and get back into better shape. No yellow jaundice eyes, or bloating or ??? Like many have said on here, I have had this for 14 years or so, so it isn't going to kill me TOMORROW. And hearing about the various problems people are having... besides the fact that these doctors don't seem to be all that open about the side effects, gives me pause. I am going to be working with Dr. Everson of Colorado University Hospital. He is the premier hepatologist in the state. So we shall see. He is also one of the doctors that was doing the clinical trials of these new DAA drugs. So hopefully he will be a little more open-minded about all of this.Thank you for your help, everyone. I am usually on these threads GIVING advice, so I appreciate being GIVEN advice on this.

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Hi Sherry!

Yes the Klonopin can be a problem I understand. I've taken it for 16 years now. I decreased my dose to a quarter of 1 mg 4 years ago and still got comfort from it once my tolerance dropped. My anxiety can get debilitating once it hits a certain level. Actually the use of klonopin and sheer will was the only thing that made me able to steel my nerves and swallow that first Harvoni pill. When my Dr first told me about interferon and ribaviron a hell noped myself out of his office fast, as I'm a single mom with No one to take care of me under that level of sickness. If I got cancer I'd be scared to death to under go that treatment as well. Is have to be shot with a tranquilizer gun and trapped for that treatment! I have researched Harvoni and understand that it targets the Hep C virus RNA and unravels its RNA chain so the virus loses the ability to reproduce. Then our own body kills the remaining virus. That's why some people may see some lingering virus after completing treatment. They aren't viable replicating viruses, just likely benign viruses that haven't been killed off yet. I also understand that some of our own RNA chains may be unraveled also in this process, possibly causing some of the weird problems people are getting from Harvoni. When you become altered on a cellular level, there will be changes. I've read that possibly RNA can be repaired using lipids but don't have any info that seemed to back that up. I have planned to consult a Dr who treats on a cellular level (can't recall their title) if I experienced problems I never had before using Harvoni, that were debilitating. There's also a legal case in the works in California against Harvoni, if you can find a doctor who will agree that your new illness was brought on by it. People may want to wait a bit and see how that shakes out before they use this drug. I'd bet allot more research will be done if the legal case is viable. I like to share info. None of us wants to be in the dark where our health is concerned. And I like to read info here as well to get realistic advice from all of you! Now if someone can tell me what to do with 3 teenagers who won't eat my cooking id be very appreciative?

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The doctors don't know squat about this medicine. I took Harvoni for 12 weeks, stopped all my supps and am now permanently damaged. Looking at what all the problems are, it is likely the body will need all the supps she is suggesting. Again....last person to ask is a doctor. They just prescribe, they don't know about this medicine. Just ask any one of us who is long term damaged as a result. Our doctors say it is not the meds and we are crazy. Yeah...that is who I want giving me advice. HA

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Hey friends,
We can smile but it's not easy when you are ill. I am noticing and it's rather scary in addition to all the labs that at off I now have unless it something else issues with confusion and focus big time. Was that what ppl referred to as the hep C brain fog? I never had it like this! I am forgetful short term memory didn't just happen overnight! It was apparent when I was on Harvoni though my 2 wks of hell. I find it so disturbing as ppl are mislead. Watching the ads on TV like its some walk though the park cake walk and we should be HAPPY it's available to US! Again if only I trusted my instincts and didn't allow my doc to intimidate me to going on it. I should have spoken uo more, not allowed the exploitation be maneuvered to looking like I should be grateful this wonderful gift. Yes right I knew then I never had a drug pushed on me so hard I even thought if I didn't go along My doc would leave, treat pts that wanted to be treated is how I recall. That's just awful to do to someone.
The weakness tinnitus and migraine with aura is almost daily. Now it's a wait game to see the new list of docs due to labs that were never not within range as I feel like I am spiraling down or somewhere. RA, lymph (!) that's why I had such pelvic pain and thyroid all very high out of range. My liver enzymes much more elevated. If u saw labs post treatment and now it's like another person. I feel like one as well.

No one is going to tell me it's not the Harvoni unless it's lead paint or something in my bldg that has been adding to the stress and illness as well. MOLD not a happy camper I pray for acceptance, I pray for healing and I pray for.......accountability. That someone, somewhere brings this to the attention of new docs and pts this drug needs a black box warning to say the least. I really think a lot of docs don't know the drug is to new. The ones who participated in trial... They know, no way by now they don't . They need to get honest and stop the cover-up.

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