Long Term Side Effects Of Harvoni (Page 12)
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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.

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

Michael H

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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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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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I have another question if Harvoni is causing all these side effects why aren't we (harvoni Patients) being helped and compinsated?

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I am waiting for a specialist that comes to my small town only once or twice a month. The must have been concerned because they made the appointment the same day I saw the O.D., with this specialist. I have not been given a diagnosis. The eye doctor stated that it could be hypertension ( my blood pressure has ran dangerously high for over a year now and I am taking four pills a day for high blood pressure. My norm runs around 180 over 100. The also said I may be diabetic but every time they do an A1C is comes out "borderline"? I have had both hips replaced, my knee is "end stage" and will need to be replaced soon and now they say i have issues with my back (bulging discs and early stages of degenerative disease. The right hip was done in 2013 and there is indicators that the parts may be recalled.

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Michael why if they think you could go blind is it taking so long to see the eye doctor, specialist???? That is typical of doctors though. I am so sorry your going thru what you are and your not alone. There are so many of us suffering since treatment without any help from the doctors that gave us that poison. Sure we are cured of Hep C but we are left a shell of who we once were.

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Michael, you are among friends. We that suffer are few but should be heard.

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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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I was treated through a Veterans Hospital for 12 weeks. I completed the treatment 6 mos ago but wasn't able to return for a final Blood check or Ultra sound. I am assuming the Virus is gone. I will return as soon as i am able for the finals.
I am writing today to make others aware of some Long Tern side affects I am having.
The Joint stiffness and cramping others complained about was one that I also expeirenced for a short time. Now I only have minor fatigue in the mornings which mends itself after i am up for awhile. The one side affect that is driving me nuts is this itching of my Hands and fingers. There is no visible rash associated with the itching on my hands but I do notice a rash on my elbow and crotch area. Scratching of course makes it worse. I have Anti-Fungal cream for the visible rash which works as long as I apply it several times a day. But the Itching of the hands is driving me nuts. The more I scratch at it the better it feels. Like a Poison Ivy or Oak always feels better after scratching. Can't figure this one out. Anyone else having a Rash or Itching issue after Treatment? Thanks ItchyJoe

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I am currently taking Harvoni for hep C. My liver ultrasound results were stage 4 cirrhosis. I have ten days left out of the twelve week treatment. For the most part I have felt pretty good. I have a question for you (the person that posted) what are the side effects on your eyes? I have not experienced the other issues "yet" and will keep my eye on what you have shared and make sure to reply. I will pray for you!

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these new hep c drugs destroy our nervous systems causing pain we did not have before treatment. I did Harvoni and a year later I am still in severe daily pain with it being worse at night. My feet hurt terribly, low back and hip pain is horrible. Also I recommend everyone get at least a yearly liver ultrasound. I have seen several people on other forums who have now died of liver cancer after being treated for Hep C. Our Dr's. need to listen to what is happening to us and list our side effects on the drug labels and adds, so others can make a decision to treat or not. People are being misled into doing a treatment with so few side effects listed it makes me sicker just thinking about all the people thinking it is a walk in the park. For some it may be but for many of us it is horrible and life devastating.

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I'm going through the same thing. I took benzos while on treatment, and when I got off of them I see the damage the treatment did. severe anxiety, clouded thinking, just feel totally sick. When you talk to doctors they think you are crazy. I had terrible side effects from epclusa, it feels like I'm still taking it . It's been 5 months, feel like I'm going crazy. I hear ringing and music all the time in my head. I got so bad my daughter had to come get me. I lived alone, have a job I'm probably fixing to loose, I can't function anymore. I'm really scared I'm stuck this way.i think epclusa damaged my nervous system.

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I would report it as a possible side effect of Harvoni.

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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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We can't all afford a beach resort, or even a trip to a beach for healing.

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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 post long term side effects from Harvoni last taken November 2015. 3 months after ringing of the ears and joint pain on left knee developed! Also high anxiety, I had to visit a Therapist & Psychiatrist ! My Gastrointerologist still today refuses to acknowledge my complaints from Harvoni! My bloods also came back with a High RA and animic readings! I took my last blood test last week . And I will find out this week on updates on blood results!

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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'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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