Long Term Side Effects Of Harvoni (Page 3)

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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Gilead makes this poison. The biggest problem you're gonna have is getting a doctor to say this medicine has messed you up. They are all gonna fall back on the Hep c. I had a life before I took epclusa. Now everyday is a battle to work, to do anything from all these nervous system problems from this mess. I wish I had never took it. My brain feels like it's being beat with a hammer everyday, and the crawling is unreal! Never had any of this till epclusa. I don't know who Gilead tested this crap on, but they didn't test it enough!

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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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I also have had lingering effects from being treated with Harvoni. Extreme fatigue and constantly sick to my stomach. I got no relief from doctors or anything else and happened to read about a root extract called Burdock. It is used as a blood and body purifier among other things. I tried it and felt better right away. After awhile I thought it had been a coincidence and stopped taking the Burdock. The Harvoni symptoms came back right away. The very night that I resumed taking the Burdock, I felt better. That is my experience with it.

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Yes the long term effects are bad. I have no quality of life. I live on pain meds, always tired & weak. I changed everything about my diet, and still no avail. I just want you guys to know you're not alone. This med is bad, some people it does not affect them at all. I've been on 5 different sites, and a lot of people are mad about this harvoni medication. I sure would like to tell u something good about it other than at 6 weeks, I was hpc clear, and at 6 months I still am clear, but I feel like s***. Good luck.

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I did the 3 drug cocktail over 2 years ago which was solvaldi, physio, and (the WORST) ribavirin. I noticed after about 3 weeks I was so nervous and depressed and the doc said my meds had nothing to do with that. It's been pretty awful since that time and it never got better.

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I stopped seeing the liver doc....i mean WHY. During my whole trt and after all he does is monitor blood work, which is good. No enzymes elevated. But I do have cirrhosis. So no more am I paying and traveling to him. I told my primary deal with it. Do the bloods and ultrasound liver to check for cancer. Also have my scopes done as recommended. With the lack if suport of any kind at this big important Loyola doc....forget about it its only a cause of stress.

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Joanne
I agree, the specialists? suck,,,my PCP is more compassionate to my reality than any one,,,just find a great one

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me too. I wonder if I am just being a big baby, or is it really possible that Harvoni caused somehow the gastroparesis (which I think began shortly after I finished the Harvoni). If it had occurred to me that there might be long term after effects, I might have chosen not to treat anymore. (did peg/intron many years ago, like you my docs removed me) This new illness I have is not curable or treatable. If it turns out there is even a chance the Harvoni did this I will be seeing a lawyer.

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audrey
I FEEL YOUR PAIN, big pharma making money and still not admitting they left us with long term effects

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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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The doc has profound limitations. It was an adverse reaction to the treatment.

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You know that poor doctor that kept telling me to take it with me crying telling him what it was doing to me. Gilead finally wrote him a letter when it was done and over and he apologized for what I had been through. Wow poor doctor. What's he gonna do about the rest of my life. I had to quit my job of 16 years, move back home with my daughter, can't think, severe anxiety, can't remember, what's this poor doctor with his limitations gonna do to help support me the rest of my life. He didn't believe a word I said. He is one of the sorriest human beings I've ever known. HEARTLESS! I don't have a life now thanks to Gilead and this doctor for giving me this poison!

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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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Where and who are the groups of people who are going to help us??? I think all these blogs and so called help forums are simply a way to get money coming in. Where can we find real help?

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I wish I knew. No one in the medical field is going to back us up. I had a psych Dr. yesterday tell me the treatment is what has messed my head up, but said he wouldn't testify to it. All we are, are dollar signs to everyone.

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I'm having a similar issue. Per ALL the doctors, the only side effects are tiredness and nauseousness. The VA Dr refused my last blood panel! I paid cash for my spouse 2 be rechecked. I did 2 minutes of research after to find that the side effects are being kept to the point of a legal suit to release the information. The drug is too new. 100 people or so, but when a drug hits the masses- that's when things go bad. It's been over 6 months since he finished the Harvoni treatment. What I've been living with is not the same man BEFORE Harvoni. In bed 24/7, if I try to get him out - he becomes enraged. This is a man who has NEVER fought with me in our 17 year marriage. He won't eat - me/nurse ratchet has to stand over and force a boost- and be treated like crap. The point of taking that crap was for quality of life. He has zero percent now - anyone else having an issue? - any suggestions? I want my husband back... :(

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I'm in a lot of pain since taking Harvoni. Please share my suggestions with your husband:

How I'm maintaining my health until the cause of my illness and it's cure are figured out.

1. Organic, high protein, no refined sugar and low fruit diet.
2. Fibromyalgia specific aqua therapy Monday, Wednesday and Friday
3. Ensuring I get eight straight hours of sleep at night by taking skullcap; resting during the day.
4. The following supplements: corvalen ribose, CoQ10, omega-3, vitamin d & k2 isotonix vitamin packets, boldo tea.
5. Self-massage with a thera-cane.
6. Chiropractic adjustments.
7. Hot epsom salt baths (drinking lots of water during them and breathing deeply).
8. Loving the beautiful life that I have, despite having lived with chronic pain since 1993.

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