Long Term Side Effects Of Harvoni (Page 4) (Top voted first)

I had Harvoni treatment last spring. I am not the same. My nervous system is a wreck. My anxiety problems have increased, depression and lack of motivation. My eyes changed drastically. My thoughts are not focused, I am nervous all the time, can focus or sleep. I had a 2 month migraine. Ringing in the ears is intense. I also was on pigalated interferon and ribivirn, I was pulled off mid treatment because I got so sick. After that treatment, I also had long term side effects. There isn't any back support for post harvoni people, nor are their anyone specializing in the after effect of long term HCV infection, it is NOT just a liver disease, it effects the nervous system and all else. I am at a loss for support with the doctors in my area, none seem to want to do any research and they don't have enough people in individual offices to report they have patients with long term problems. In our groups there are many with long term side effects. The doctor's try to pin it all on other stuff without really knowing. They just aren't listening. I know my body, I know the changes I have experienced. I am just really disappointed that there is not knowledgeable people out there for post HCV and post treatment hcv survivors. I need a support team that listens, they don't. I have extreme frustration to the lack of support after treatment.

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I have most of the same problems, and of course my doctor says it's something else, they even suggested food poisoning. Who has food poisoning for six months? I feel so helpless

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I'm 55 years old and I too suffer from those side effects. I have now been diagnosed with fibromyalgia. For self care I am taking a lot of supplements and spending five hours a day 5 days a week in a therapeutic pool and I go to a chiropractor twice a week. I use a theracane to do trigger point massage on myself. My hope is that I will be ok in two years, but my doctor told me there is no cure for fibromyalgia. No matter what I do, I can't fully get rid of my back, neck and knee pain so I avoid sitting or doing anything that hurts my back and neck and knees. I was just approved for SSI benefits.

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I am one year post harvoni and I have never dealt with the type of pain I am still dealing with since treatment: low back, hips, tailbone, feet, legs, you name it, it is painful. I am taking 100mg demerol twice a day and it barely helps the pain. This is horrible, I can't do anything productive! Going nuts.

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I have found that the best way to heal the body is to spend a lot of time in the beach and in the ocean.

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I, too, have been quite ill post Harvoni, it is almost 2 years. I came down with a dreadful illness called GASTROPARESIS, basically meaning my food does not digest in the nomal amount of time. This makes my time on Harvoni seem like a picnic - at least it had an end. This illness is not curable. I spend most of my time in bed. Does anyone think this could be from the Harvoni?

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I took my last pill Thursday June 28th. I have been suicidal. My eyes have been watering constantly and when I went in for an examination the eye doctor said my blood vessels are bursting and I "COULD" go blind overnight. I am scheduled to see a special eye doctor in a week or so. This never happened to me before. Why now that I am on harvoni? I have not got my blood panel back yet I just pray god had healed me. If anyone out there is experiencing the eye watering bad vision ect. I've had depression but never have I been suicidal...... For legal purposes I'm not treating suicide or to hurt anyone else. Things have never been this bad before....EVER!

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We need to do something other than filing complaints with the company that makes the drug harvoni, which is in Ireland.

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Thank you and if they decide to help us or compensate us keep me in the loop.

Michael H

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In my case, I suspect I have other another virus or viruses that were either reactivated or got out of control when I was treated with Harvoni in 2015. Two weeks ago, I had an outbreak of shingles and began taking valacyclovir immediately. After seven days, I noticed my muscle pains (fibromyalgia) greatly decreased. I asked my fibromyalgia specialist to prescribe more of this medicine for me. He did. We'll see how I do. I'm very hopeful.

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You certainly deserve the attention and care as the people on it. I am 2 years post tx and I am very different. I got sick with a very serious stomach problem pretty soon after finishing the Harvoni. I wonder if there is any chance the meds caused this. Or maybe it, like you, I tried the interferon/riba 3 times and each time I was taken off my docs. ( lots in common, huh?)

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Wow. Gastroparesis. What a horrible adverse reaction. It seems Harvoni can do serious damage to our nervous system. It's all very confusing. I wonder if my fibromyalgia is a reactivation of a virus that was laying dormant.

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Are you any better? You sound just like me. I am the same way 6 months post treatment. Feel like I'm loosing my mind.

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I really want to know if there is any possibility the Harvoni caused the gastroparesis? Is that idea the way other people feel? Maybe we should be starting a legal suit.

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I think I finished the Harvoni 2 years ago. I came down with a terrible illness called: gastroparesis. Which means that my stomach always hurts/ I am always nauseous all the time and have no energy.. My food digestion should not be much under 100. When tested and my doc said 70% at the rate I was digesting my food didn't sound so bad to and my DOC said to me, no 70% after 4 hours is terrible. The big ? is: does Harvoni have anything to do with this. Btw, this is a permanent condition. There is no cure or real treatment. Is anone experiencing bad stomach problems after Harvoni?

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How can we find out if all these different symptoms can be tracked to Harvoni? The medical people won't help, Gilead won't help, but it might be very appealing to an attorney for a legal case. And hell yeah, we'd welcome some money. Maybe it could take me to a place where I could get the most possible help from the different doctors/specialists - maybe no one in Arkansas, where I live now.

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I absolutely agree. I sent Gilead an email and told them they ruined my life! Got no response at all. I didn't really expect to.

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I hate to tell you this, but you asked so... no, I am not better, I am worse. Still don't know if it has anything to do with the Harvoni, Maye just bad luck, but I remember not feeling anywhere this bad before the treatment. But I do want to be fair and tell you all that my grandson (grown but mentally ill) disappeared almost 4 years ago. Between his going missing and being so sick myself, I am lost.

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Audrey, you're not alone. Hundreds and hundreds are sick from Harvoni.

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I will call Gilead Support Path. I called them three months after Harvoni and they instructed me to tell my gastroenterologist and so I did and he told me to take vitamins and a year after that he told me to find a doctor who could help me with my pain and fatigue. He was very sweet. I never called Gilead again, not realizing I should. I then found a wonderful doctor who acknowledged my pain and fatigue and diagnosed fibromyalgia and CFS and greatly helped me win SSI benefits, which I desperately needed because I remained unable to work. My lawyer and SS judge can also be credited. I wonder if Harvoni reactivated a virus or viruses in us, hence all of our symptoms. Some here have posted they now have gastroparesis and I've read that can be caused by a virus. It's all very curious and I would like to be part of a study and experimental treatments to try to get us better.

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Nasy: Remain calm. Find a good physician. Perhaps at osteopath. Write down all of your symptoms so that you don't forget to tell your doctor everything.

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