Long Term Side Effects Of Harvoni (Top voted first)

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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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2

Hi I am almost two years post treatment now and I so agree with you. I gave up seeing any doctors since they have no answers that make any sense at all. Many are told they are imagining it. Anyone can search the internet to find hundreds and hundreds of people's posts about long term post side effects. We are forever changed. Something I have just learned to live with. And I am in pain. But I move on because we have no choice. I just want the medical community to at least admit we have been damaged.

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4

Luna of course work with your own doctor but I used Tylenol as needed which I limited to once or twice per week. Just to get some relief on occasion. Otherwise I just kept moving. I walk a couple miles per day with my dog in the woods. It keeps me sane and helps my joint stiffness. Sitting idle is worse than moving. I stiffen up too much! Now that almost two years have past it isn't quite as bad as the first few months for sure. I saw a specialist and they thought I had RA as well. In the end it wasn't and I do have joints that are deteriorated in my feet and hands. But more test showed no RA factor in blood and not enough inflammation to label me. That is the case for many of us. I feel Harvoni sped up my aging process. From terrible facial wrinkles to joint problems. I had neither prior to treatment. I look like I aged ten years. It sucks!!! Have your doctor check your Vitamin B and D levels please. Many of us were found to be seriously low in both and that can cause a lot of problems with your pain.

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1

@prrdrr,

Sorry to hear about your experience with Harvoni and other treatment options. I feel the same way about how many of these doctors are so close-minded it's almost unbearable to have an open ended discussion with them. They all seem to go by the classroom textbook and if it's not in that book they refuse to listen. At any rate, I know there are great support groups here on MedsChat involving post Harvoni patients who may have more insight to offer. I went ahead and linked to the few discussion threads I'm presently aware of that you may wish to participate in:

Harvoni Side Effects

Harvoni Withdrawal Symptoms

Post Harvoni Reduced Immunity

Side Effects and Lack of Transparency Harvoni

Post Harvoni 2 Months Still Feeling Intermittent Symptoms

I hope this helps and wish you good health!

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54

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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22

Yes! I am now on drugs for premature atrial contractions. The PACs are so bad they make me feel like I am being choked. Also, I cannot tolerate the outdoors if the temperature is above 86 degrees. I feel like someone has started a fire inside my body, I get soaked from prespiration, and I feel like I will collapse at any second. It's very hard to explain to the people I am around. Also, the fatigue from my fibromyalgia has increased tremendously. My first go round with Inteferon and Ribavarin left me with type 1 diabetes and I had reservations about the Harvoni but my doctor assured me I would be fine. The ironic thing is I'm 65 and never have had symptoms of Hep C. I'll always wonder if I made a horrible mistake with treatment. Think about your options. No one ever discussed the possibility of life altering side effects or complications.

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7

Hi Scared Mom - I agree with the previous poster that we are worried about you and your son!

I just responded to your message in the other harvoni thread which is far more active. Please read it ASAP. The discussion thread is:

Harvoni Side Effects (newest posts first)

Best wishes and hope this helps!

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20

Try to find a neurologist who is intelligent and caring. I too tried interferon/ribavirin and could not tolerate the treatment and stopped after the first shot. Severe side effects lasted three months and I never fully recovered. I have now been diagnosed with fibromyalgia and I had to pay out of pocket to get diagnosed. Seems doctors and health insurances don't want to acknowledge our health problems.

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32

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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39

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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65

For anyone and everyone who is on/or done with Harvoni, there is a number just for us. It is called "Support Path", staffed only by nurses who have some knowledge we don't. Anyway, I think a lot of phone calls would be really looked into by Gilead. Here is Support Path's number: 1-855-769-7284. They are required to notify Gilead. They can't know if we don't tell them. And if you know how to start a new discussion, would you post this info just to start. I would do it myself but I don't know.

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75

Those people don't give a crap! Called them every week. And those so called nurses, all they ever told me was, well it's not suppose to do that? No kidding!

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Re: Enoughalready (# 4) Expand Referenced Message

My husband passed away a month ago. He was treated with Harvoni in 2015. He thought he had no side effects from it. He thought he was just hurting physically from two car accidents and that the rest was just him slowly losing his mind. I am still waiting for the death certificate so I can get his medical records. That can be picked up Monday. The medical examiner is mailing me the autopsy. I never thought to mention to any one at that time that he had been on Harvoni two years ago. I was told by the hospital that he died of acute renal injury with severe infection and encephalopathy. I am a medical transcriptionist and this did not make sense to me. His kidney (renal) diagnostics had been normal until then. They were evaluated regularly because he was on chronic hydrocodone therapy for back issues related to the two car accidents. Since something seemed "off" to me about this I have been researching online and just yesterday found out others who took Harvoni had all of the exact same symptoms as my husband did. Yesterday I wanted to just give up and go be with him. Then I found these posts. This makes me mad as hell. Now I want to find out if this is why my husband lost his life and try to help others in his position, help make sure the public is aware of these side effects, and try to make the company or someone pay for doing this to people. I am not sure where to start, but this was the first place I found to speak out. I would be interested in any advice or suggestions. My husband passed away thinking he was crazy and that it was all his fault. He left behind four children and 10 grandchildren and was a wonderful, kind, and compassionate man who was loved by all who knew him. Not only does he, but all of us, deserve to know the truth.

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111

I too haven taken Harvoni from. Dec. 2015 to Feb. 16 everything seemed great cured the Hep C or so they say and today it still hasn't come back. But in the last year it seem that i have had more pains in shoulders back and now behind my knee that just seem to come out of no where and it has been excruciating. I couldn't figure out why blamed it on getting older 57 but i ask other my age and they have pains but not like mine so then a light goes off in my head maybe Harvoni might be the problem. Maybe we are the guinea pigs for long term studies. Anyway glad that i might have got an answer to my question sorry there is maybe a reason that i could have just said no

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8

Thanks enoughalready,

I have a great GP, as my GI specialist got me the drug and offered NO followup ...nothing. I had a blood draw this week for my vitamin levels. GP is checking me every 4 weeks since I started and checking anything I can come up with from forums. I was on hepmag and people got really hateful there about harvoni being such a miracle drug and accusing those of us symptomatic after tx as being hypochondriacs with pre-existing conditions. Hanging in there...looking for Vanessa where is she?

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14

Ringing of the ears intense after 3 month completed regiment post Harvoni back in Feb 2016! Went to otolaryngologist, neurologist, internal medicine doctor, Gastrointerologist, they all prescribed supplements, after taking them they didn't work, I tried a second round, still to no good! Ringing in the ears is constant 24/7, went back to otolaryngology no cure he stated!

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19

My husband completed Harvoni treatment in 2016. Since then he is sick or in pain most of the time. He is moody and forgetful. And I believe it has had a major effect on his ability to get and maintain an errection. Has anyone else noticed this?

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28

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

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45

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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46

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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59

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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