Harvoni Side Effects (Page 30)

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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Hello all,

I'm so sorry many of you are feeling bad. I don't have any good answers other than to get on board with the legal case that's being put together against Harvoni. I took it for 12 weeks, did get some headaches and fatigue. I worked full time thru it, just came home and went straight to bed. After 6 weeks on it, my ears started ringing and have never stopped. I completed this med Jan 25, 2016. I didn't have any trouble taking it, but did notice tendinitis pop up in various places after I finished it. First my hand, then an elbow, etc. I wore a hand brace for awhile and that healed up ok. Same with my elbow. My doctor said it was likely the Harvoni that caused the tendons to swell like that. Anyway I no longer have Hep C, tho I do have stage four compensated cirrhosis. I don't feel as great as I expected, still tired and foggy often, but I guess that's because I have cirrhosis. The pain in my side went away tho, and I can eat again. I no longer look like walking death. Harvoni seems to do different things too different people. I hope you all find some comfort in your lives, and if you can't get to feeling well, maybe just sue the heck out of Gilead. Possibly there will be a treatment to reverse some of these awful effects that people are suffering with. I hope!

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Wow, James, I have to say, that while reading what you posted I started off thinking about many things like how lucky you are, being able to continue to have the ability and strength to still be able to work because the side effects of Harvoni are not only very real for so many of us, they have even killed MANY thus far as well. Just as I was beginning to feel some happiness for you and some empathy for you on those bad days that you are able to get up, get the strength and are able to work throughout those days, you go and say something that is so far from the truth, I and many others are not lazy. I and many others are not looking for a handout, we are looking for a hand up. I am not looking for anyone's approval, I know first hand my side effects and results and I can only state the facts that apply to me, so whether you buy it or believe it, Is not the question, nor is it the issue..... Everyone's reaction and side effects are theirs and are very real to them.. I am a Veteran, I am not some lazy schmuck looking for a handout and a tissue however I am disabled, whether you like it or not, whether you believe it or care about it really doesn't means anything in the grand scheme of things either. Please know I would much rather be out there making a great income AGAIN but instead I am bedridden, with blurry vision, with a foot the size of a basketball, with headaches due to infections caused by Harvoni as well as about 26 or 27 other side effects like severe peripheral neuropathy and several other VERY debilitating side effects. Your opinion about me and other people that have had their lives turned upside down, inside out and that are now a shell of what they used to be couldnt be more inaccurate and to suggest that those of us that are receiving disability are somehow lazy, looking for a free ride, really is upsetting and disturbing to be quite Frank. I spend my days dying slowly, having test after test yet finding little help in the way of slowing these side effects and symptoms down.. I had a life before Harvoni, now I cant get out of bed without serious pain, serious and painful neuropathy issues, dizziness and excruciating pain in back, head, legs and nerves as well as all my swollen joints.

After I read what you wrote and said, my thoughts are that you really have no idea how bad some of us have it, second you're very lucky that you can still work and last, you may not be in tune to others who have had real life changing side effects like myself.... I am happy, very happy for those who have taken Harvoni with little to no side effects, you are apparently in that group... However, I also grieve for those who died, for those who had mothers, fathers, sons, daughter etc., on Harvoni that died and for those like me whose life is almost a complete 360° difference for the worse who is also dying a slow painful death. I went from being a person who had a life, a person who enjoyed life, a person who was happy to wake up, to a person who now, all due to Harvoni has no quality of life.. Usually when I respond or share a issue or experience, I always say I'm a so happy for those whose side effects hasn't and didn't ruin their lives and are living a relatively pain and issue free life living the dream and vision of Harvoni, even being a little envious because thats what my hope as was all our hopes. I took Harvoni with the thought and hope that I could lead a healthy, disease free life and be able to add years to my good life, now, I just pray to be able to get out of bed, be able to see clearly again and please know I dont want this kind of life. So, while your comments, started off okay, even having a little bit of my understanding and appreciation for how strong, determined and fortunate you are. Then, you kept writing and wound up oblivious to those of us who lost everything, and how Harvoni has affected us physically, mentally and emotionally...... Everyday I keep these people in my prayers, as well as me because it has hurt us so very bad and every night praying to God that he may see fit to heal us and to restore some kind of A LIFE back to us,,, I will be including you in my prayers as well, praying that individuals like you are given more of an open mind.... I ask God all the time why, why some have so little side effects, because it blinds people who have gotten through it relatively unscathed to other peoples real plight.. James, I WANT my income back, I WANT my life back,,, but first,,, I would be happy to be able to get up out of bed, I would give ALL the air that I breath to walk and be half pain free as well as to be able to see clearly again. So may God continue to bless you and your recovery and may he also bless you with more understanding, more empathy for those who were not so fortunate or blessed as you have been.

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To Keithn8eb...it breaks my heart to hear your story. I am so sorry this has happened to you. I will pray God will deliver you from your pain! I was diagnosed in '95 and took Interferon for 18 months. The VA wants me on a drug similar to Harvoni but since I have Geno type 3 the Harvoni will not work for me. I have declined their offer. I choose to live with the HepC. These side effects sound terrible and right now although I have no energy I'm better than you and others seem to be. I hope you start feeling better soon. I really do!

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Thanks guys for sharing. I guess I'm going to keep taking this med, I don't want to die. Praying for everyone. God help us all.

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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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Sir thank you for repling to these post! I am very sorry for what these doc r doing to us so I decided to stop treatment i am on day 56 varil load is ok but the doc never told me about any of these long term effects! Thank you again and my god bless u and ur family

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Sir i readed were alot of people have had these long term side effects i am not a doctor so i just giving you my personal opinion i am on day 56, my load count is ok so i going to stop treatment wish I could tell you more thankyou for your info, in prays for you and your family

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I totally agree with you about the pharmaceutical companies. Killing us and it's OK and destroying our lives.Was poisoned with Cipro and Levaquin by my pulmonary Dr.

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@Post #584,

Why do u say u don't want to die? Sometimes the side effects are painful.

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dont be scared. there is always a good and a bad side to everything that we put into our bodies. look at other blogs and forums for the positive.; this one is more focused on the negative. im on day 2 of taking harvoni and im having some diarrhea, but the reality is .. this drug is fighting a major viral infection in my blood, it has to push it out of our bodies in some way shape or form. be patient and pray have faith and try to trust the process. thats what i am doing

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How are you feeling now since you have decided to continue? tx

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I would advise you to call your doctor or whomever prescribed your Harvoni.

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Today's my 24th day on Harvoni. Has it caused any changes? Yes! Day 3 I started to get head fog, day 5 my liver was pulsing & pushing for hrs! Felt like something was trying to get out. After a few days it stopped. I feel like I need to eat & I feel acidic. I'm sure all my gut flora is dead! Things have changed. I'm so clumsy & I have dreadful dyslexia!! I'm not feeling right, however this drug is very powerful & HCV is a dreadful virus that keeps trying to replicate & is capable of 'hiding' in other parts of our system so I guess it has to be powerful!! See: (Review Article A New Twist to a Chronic HCV Infection: Occult Hepatitis C, Revised 15 April 2015). I researched a lot before starting. I actually refused treatment for a year as I felt it may be only suppressing the HCV & not actually be a "cure", as the case with interferon. I know many people died during interferon treatment trials! I still think Gilead Sciences are more interested in making huge profits to keep their shareholder happy, than being honest!! I must admit I am a bit concerned I may be presented with something like cancer down the track but isn't that where the HCV was heading anyhow?? I wanted to comment here regarding drinking lots of tap water. I'm sure that is what's causing aching joints, etc. My town was regularly 'overdosed' with fluoride in our water supply some years ago due to a worn shaft in the mixer which eventually broke and fell to the bottom of the tank causing a huge overdosing and our water being cut off! We stopped drinking tap water and bought rain tanks. My 'Rheumatoid arthritis' slowly vanished and hasn't troubled me since we stopped drinking tap treated water. I'm also careful what bottled water we buy when traveling. Many have high amounts of fluoride added. My husband and children grew up on tank water without fluoride, they all have fab teeth and no fillings. Also after we got the rain tanks and I used that water to cook and drink, my total health improved and my ALT levels dropped down to almost normal!! So I think that tap water makes your HCV worse!! I hope you all find a way of life that brings you happiness. Life is precious, take care people.

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There are many different side effects, many of which doctors are refusing to acknowledge. Many of the more common are long term (permanent) joint pain, muscle pain, headache, tinnitus, hair loss, fatigue, brain fog, swelling of the the body, just to name a few along with severe liver damage, death, heart issues, lung damage, brain lesions, etc. I have a list from the FDA as well as have talked to many people who are now damaged after Harvoni, me included. Wish I never took it. Hep C is NOT an automatic death sentence and doctors only know what the drug reps tell them about medications. They are certainly not know alls by any means. Good luck to all.

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Coming up on 22 months of sickness after taking 8 weeks of Harvoni. Dr. Internet provided me with an explanation (no thanks to my health care provider). I'm no longer producing stomach acid. Consequences? Not digesting food & slowly starving to death. Low vitamin B12 left me with numb hands & feet & neuropathic pain in my face. Low iron means no energy. Now sensitive to tylenol & ibuprofen. Health care provider suggested alcohol for pain relief, once I refused opioids (wrap your head around that one! )

Have added digestive enzymes to successfully assimilate protein. Doing my own daily vitamin B12 shots (2 nurse practitioners & a naturopath poohpoohed it & failed to tell me that I did not need a prescription for injectable B12). Added iron supplementation plus a multi-vitamin designed for bipolar disorder. Currently feel at least 50% better than I did at Christmas. I have sensation back in my fingers!

I'm now hopeful for the future. Couldn't have said that last year. Now to learn to stop being angry and start looking forward to the rest of my life.

Fingers crossed that other Harvoni-damaged people are as fortunate.

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Just to confirm your problems, I am also around 22 months post Harvoni and was low B-12 and got injections once a week for 5 weeks plus low iron/ferritin and taking supplements, and that is only 2 of the over a dozen side effects Harvoni caused that didn't go away after completing treatment.

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Chez Bonnie same deal as you. Two years post treatment and low B12 and problems with hands and feet since two weeks into treatment. Not able to tolerate B12. Too stimulating to me. At least the sublinquals are. Haven't done injections yet due to such a bad reaction to the other forms of B12.

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Tony, you are experiencing some common Harvoni side effects that they don't like to admit to. Unfortunately there are many more. There are open support groups around.

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Hi all. I wrote in detail about my horrendous experience taking Harvoni last year. I had about 12 side effects and was basically not functioning. I was cured and felt well again about a month after completing the course.
About a month after that I got what I thought was a sinus infection or virus. I have had 3 courses of antibiotics and many doctors appointments. It is now 4 months later and I am worse. It pains me to write this but I am back to feeling afraid again.
I am chronically fatigued, sore throat, muscle aches and a headache that I cannot even describe it is so bad. My eyes even hurt. I am not old and used to enjoy working and looking after my family, now I cannot wait to sit on the couch and do nothing. I am not sleepy, I just cannot make my body do what my mind wants it to.
Tomorrow I am starting testing for other illnesses (more freakin fun) but I have my doubts.
Pathetically, I never thought I would hear myself say this, but I am HOPING to have glandular fever because it fits the symptoms. I fear though that it is Harvoni aftermath. The timing was just too coincidental. I am wondering about my immune system. Did anyone else experience anything like this post Harvoni ?
I know many of you have nerve pain (my sincere sympathies, that must be horrible), but my symptoms seemed quite different from most people.
Thanks for reading
Vanessa

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Vanessa, youve just described me to a tee.. I am having the same sinus issues, it took 71 days for anyone to get me on the right antibiotics and because it was such long time before it was stabilized I developed a lesion on the brain. My eyes hurt bad, blurry, seeing spots, I am so wiped out its pathetic as you say... I know this was all because of Harvoni, it was the only med I took, I also have about 25 - 30 side effects that no one has been able to tell me what it is, how to correct and I feel like I am dying a slow death... So you are not alone at all... I wish you a healthy, healthier outcome..
Jim

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