Long Term Side Effects Of Harvoni (Page 4)
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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.

263 Replies (14 Pages)

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203

I use to have tons of energy and it is gone, gone, gone. Yeah, I have a pretty good day a couple of times a week, but that is too few. I do feel like the Harvoni is killing me slowly, but maybe not because my severe stomach problems 2 weeks ago came on with no warning. So two operations removing parts of my colon and now my small intestine. I am just waiting for it to happen again and I hope it doesn't and I try to be positive, but it is hard because I am in pain. The suboxone is awful too. The last two years have been hell between those two big pharma medicines. I have never been in so much pain in my life as I was 2weeks ago and I think I am going to get a lawyer. I was kept in the DR for over 4 hours after doctor saw me, but didn't examine me at all and nothing happened. I have a photo of my blood and urine sitting in my room for over 4 hours after the ambulance dropped me off. I have also found out my sub doctor talked about my addiction problems to the doctors who saw me and now I can't get 3 days of pain meds because my sub Dr is furious I weaned myself off suboxone. I just want my old me back with all her energy and happiness. I pray the long term effects subside one day.

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202

I use to have tons of energy and it is gone, gone, gone. Yeah, I have a pretty good day a couple of times a week, but that is too few. I do feel like the Harvoni is killing me slowly, but maybe not because my severe stomach problems 2 weeks ago came on with no warning. So two operations removing parts of my colon and now my small intestine. I am just waiting for it to happen again and upbeat it doesn't and he and to be positive, but it is hard because I am in pain. The silicone is awful too. The last two years have been help between those two big pharma medicine. I have never been in so much pain in my life as I was 2weeks ago and I think I am going to get a lawyer. I was kept in the Dr for over 4 hours after doctor saw me, but didn't examine me at all and nothing happened. I have a photo of my blood and urine sitting in my room for over 4 hours after the ambulance dropped me off. I have also found out my sub doctor talked about my addiction problems to the doctors who saw me and now I can't get 3 days of pain meds because my sub Dr is furious I weaned myself off suboxone. I just want my old me back with all her energy and happiness. I pray the long term effects subside one day.

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201

Re: Edid (# 200) Expand Referenced Message

Wish there was a class action as many of us have been forever damaged from taking Harvoni. There is a law firm in Florida, Levin Papantonio, that is taking information about cases but at this point not pursuing active action against Gilead. You may want to contact them. There are so many who have been injured and it is a shame that we all can't band together against this horrible pharmaceutical company who cares so little about us and so much about $$$$$.

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200

Are there any class action lawsuits against Harvoni for long term side effects? I have almost died and they had to take 10 feet of my small intestine. They had previously taken a quarter of my colon. All this post Harvoni. 22 staples in my stomach and because I was once on Suboxone, I cant get pain meds. Harvoni and Suboxone, pure poison.

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199

Everyone who has the harvoni side effects of all right on track you're not going crazy I have identical symptoms the pharmaceutical company is not taking responsibility my doctor is not listening they want to say it's something else when it's not it's exactly side effects from the harvoni

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198

I am right there with all the symptoms. I have found that organic flax seed oil taken 1-2 tablespoons a day is helping my gut and bowel movements better than anything. It has to be bought refrigerated and kept cold. I order from Vitacost and they ship it with a cold pack. It is working wonders on my gut issues. I still have no appetite and I have lost 45 pounds in the 2 years since treatment. Severe depression, fatigue, lower back pain so bad I am getting a steroid injection in my spine, they help enough that the pain meds actually take the edge off now. I feel like i am slowly dying a long slow miserable death and I am only 63 soon to have a BD and feel like i am in my 80's.

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197

Re: Audrey (# 186) Expand Referenced Message

I now consider all Drs quacks. I was stage 3 pre-Harvoni. Now I'm stage 4 after POST Harvoni. I've been referred to KU transplant center with a MELD (model of end time liver disease). He prescribed Lactulose to have 2-3 bowel movements a day. DOESN'T WORK. My digestive system sucks. I've taken better care of myself since '01 when I was diagnosed than ever. We all have been duped. I would suggest a NUTRI-BULLET for BM's. I do about 2-3 cups of water and the same with blueberries, spinach and kale. Play with it to get a malt like consistency. It helped with BM's and any GREEN veggies help with clearing toxins from our livers. I feel for ya cuz we're not the only ones whove been lab rats for big pharma. Drs won't tell ya the truth cuz they're all in bed with big PHARMA. And I agree with you, we are expendable, Harvoni's killing us. God bless ya.

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196

Re: Elizabeth (# 195) Expand Referenced Message

I know how you feel along with many others. After three years, I feel like Harvoni has poisoned my body and it is slowly killing me.

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195

I’ve been so devoted to maintaining my health but the past week has been so painful that I’m not able to stick to my healing routine. I wonder if I’m slowly dying. I keep imagining that I will reach a healthy existence, but on days like these, I get a little discouraged.

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194

Sorry, think I didn't understand y'all's conversation.

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193

Re: Cathy (# 191) Expand Referenced Message

I just sent an email with everything on this page on it.

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192

Re: Audrey (# 188) Expand Referenced Message

You’re right. I’m looking into it now. Thanks for good advice.

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191

Re: Elizabeth (# 190) Expand Referenced Message

If you do send a letter, send it certified, return receipt requested. You can also call the attorney bar association and they can help you find an attorney who will take your case inn a pro bono basis (no cost to you).

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190

Re: Lisa (# 189) Expand Referenced Message

Send them a letter telling them what is wrong in the medical record and instruct them to change it to what you know to be accurate.

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189

Re: Elizabeth (# 184) Expand Referenced Message

I have no idea how to even go about changing it. I did get the hospital records and there are a lot of discrepancies in them. I can't afford a lawyer to help though since I am not trying to make it on just my income.

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188

Re: Elizabeth (# 178) Expand Referenced Message

I live in a town of 8000. I got help through an agency, she helped me shower, make my bed … surely (I hope) there must be some sort of help for you. If it wasn't for my husband, I don't think I could make it.

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187

Re: Cieira (# 183) Expand Referenced Message

I know how you feel. I have a missing grandson, gone over 4 and a half years. No word, no sign. At this point I think he was murdered, committed suicide, being held against his will, joined a cult? Or maybe (hopefully) does not want to be found. But I am 67, he is/would be 25 now. I raised him. No support except this one group of volunteers who have all had a loved one go missing. No one else wants to hear about it. It hurts.

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186

I am more than 2 years post Harvoni. I have since developed a horrible illness called gastroparesis. It basically means that my digestive system does not work well anymore; and causes more things to hurt in my stomach area than I thought was possible. Was it the Harvoni? Only the docs might know (surely SOME must) and they're not talking. I know for sure that I am much sicker than I was before treatment.

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185

Re: Skpp930 (# 182) Expand Referenced Message

Thank you for doing this (sending info. to Gilead).

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184

Re: Lisa (# 181) Expand Referenced Message

You should have the cause of death officially changed. Suicide second to pneumonia makes no sense.

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