Long Term Side Effects Of Harvoni (Page 10)

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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Re: Cieira (# 180)

My husband died nine months ago today. He had taken Harvoni and they said he was cured. He had all these same side effects. He was 57 years old. He had the muscle pain, joint pain, other bone pain, constant movement, insomnia, migraines, ringing of the ears, gradual loss of vision, confusion, memory loss, dizziness, fatigue, tingling and numbness in his extremities, depression, anxiety, panic attacks, increasing agitation, angry outbursts, and thought he was going crazy. Agitation and angry outbursts is what ended up sending him to the hospital and a week later he died. Yes, he was angry and confused that night, but he was conscious when the police came. The next time I saw him he was in a coma. Doctors did not tell me much, just that he had an acute renal injury, a severe infection, and that his organs were slowly shutting down. A week later I had to make the decision to take him off of life support. I was told he died of suicide secondary to pneumonia. I still think it was the Harvoni. He was not the type to kill himself and by pneumonia? Really? I wish I knew all of this before I lost him.

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I don't know what good if any it will do, but I sent all our replies on here to Gilead. I'm sure they don't care, but I sent them anyways.

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Re: Lisa (# 181)

How on earth did they come up with suicide when his organs were shutting down? I am so depressed, I have NO support system.

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Re: Lisa (# 181)

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

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Re: Skpp930 (# 182)

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

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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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Re: Cieira (# 183)

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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Re: Elizabeth (# 178)

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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Re: Elizabeth (# 184)

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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Re: Lisa (# 189)

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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Re: Elizabeth (# 190)

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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Re: Audrey (# 188)

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

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Re: Cathy (# 191)

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

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

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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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Re: Elizabeth (# 195)

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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Re: Audrey (# 186)

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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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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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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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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