Long Term Side Effects Of Harvoni (Page 5)

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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You must take your husband to a good doctor. Don't give up hope. For me, I think Harvoni reactivated another virus (possibly Epstein Barr, possibly a virus that is not yet identifiable) and I've been referred to Dr. Susan Levine in NYC, who is an infectious disease specialist and fibromyalgia specialist, for treatment with an antiviral. Valacyclovir has been making me feel better. I stumbled upon this realization when taking it for a shingles outbreak. Or there might be another reason why your husband is so sick, but you must find a good doctor to help him get better. He must not give up hope. I have been unable to work since 2000 and I became homeless because of it, so you can imagine how difficult my life has been and I am now seeing light at the end of the tunnel.

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Re: Enoughalready (# 4)

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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I'm going to blame interferon for your problems. Quite frankly this and the older drugs actually killed people with the side effects and yet no one threw a tantrum about it like they do the harvoni to spite how few (if any) side effects it has.
I can only attribute this to it being new so people are more apprehensive about it.

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Re: Luna (# 3)

RA can be a symptom of having Hep C.
Even if it is gone the RA can remain although some find its symptoms go after treatment because it's not RA just a symptom of hep c.
Most who start harvoni have had hep c for many years and it's at this time to they have brought out better scans to find liver damage, during the period most start, it's about this time when the effects of hep c on your body start to reveal themselves.
Most go after a year of healing post treatment, but also when liver damage is severe it may not help your liver heal as damage is already done and may progress. From what I understand though, harvoni ridding you of hep c is one less attack on your liver that you don't need.

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Re: Tania (# 84)

I don't have liver damage. I am experiencing fibromyalgia, arthritis and bone loss.

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Re: Concerned wife (# 82)

I have been having feelings of losing my mind also after epclusa which has the same thing as harvoni in it plus another poison in it. I've lost my job, my home, had to move in with my daughter and all the doctors say is, well the only side effects are headache and being tired, what a crock of crap! I had no problems like this till I took this medicine. It is the medicine! I could tell it was messing me up when I was taking it.

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Re: Tania (# 83)

Actually, the adverse effects of interferon WERE written about in books on hepatitis C and many people discussed adverse effects online as well.

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I took 12 weeks of Harvoni two years ago. I have had joint pain, inflamation, and legs cramps ever since. I was also diagnosed with PD. Doctors will not acknowledge that Harvroni has lasting side effects.

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I was diagnosed with hep c a few years ago..i really didn t notice it...so on a doctor visit my doctor informed me of a new treatment for hep c...I was very hesitant since at that time I was feeling good...so the doc said all the right things...I started the horvoni treatments...I was feeling ok until the 8th week....then all of a sudden I felt pain and burning from the top of my legs to my stomach...especially on my backside...I could not walk without pain..I could not sit without pain...my legs and feet swollen...I call the doctor she said she doesn t know what's up but would do some research..it's been 2 months since I stopped the treatments..I couldn t stand all the different pain I was experiencing..I have improved may 10 per cent as far as pain goes...and burning in my crotch area was a experience i wil never forget...it lasted a couple of weeks..my question is will all this pain ever go away...

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Re: In pain most of the time (# 89)

Oh dear, there are so very many of us still suffering, I tried so many magnesium supplements and found one that is helping with my legs and feet pain - it is called "crampdefence". You can find it online, just google cramp defense. I have to take 9 pills a day, 3 at a time or I can't sleep because my legs cramp so terribly. Also, I have had headaches every day since treatment over a year ago...Harvoni has many side effects they are still not admitting to. It will advance any cancer cell you have in your body also. Good luck.

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Re: Tania (# 83)

Harvoni has killed many people, no one is talking about those deaths. It was and still is a demon drug to me, I still have remaining issues that I never had before harvoni

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I took Harvoni for 6 mos. I am a transplant recipent. I was again end stage 3 early 4 with this liver. It did not reverse.
I have a serious problem. It did effect my ability to focus. Some days i feel like i can still do real estate. But, most days i tire out to quick and staying focus is a real problem. I am grateful the HepC was killed or i would be dead now. I just want to work and go at a good pace.

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Re: Elizabeth (# 20)


Unfortunately there are far too many of us who took this drug as a miracle cure and I was assured by my gastro it was safe. I emphasized I would not take if I would end up with problems. He assured me. HA! 2 1/2 years post treatment and ringing in the ears 24/7, horrible neuropathy, constant headache, irregular heartbeat, joint pain, fatigue, brain fog......none of which I had before treatment. My gastro said it is all in my head. What a shame he is not even open to the fact that Harvoni caused these problems. I wish I had my old life back. :(

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Re: CuredandMiserable (# 93)

I guess you're gastroenterologist can't admit the truth because he'll feel guilty. Very sad for all of us who are suffering.

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Re: Michael H (# 35)

I was on harvoni at the beginning of 2015 when it first came out it did eradicate the virus that I was not prepared for the long-term side effects one of which is night blindness. I can no longer drive at night and I have to wear sunglasses during the day otherwise when I enter a building I cannot see. I have also gained a lot of weight which makes me even more tired than I already am. You're not alone.

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I had my last treatment February,I too.legs aching,knees swelling,ringing in ears ,gaining weight,bad cholesterol, both types,just found out I have high blood pressure, not had these issue, I was healthier before this medication ,Doctor treating me never explain nothing,just gave me results off blood work,I think this was a money making scam for the cost off this drug to bill insurance company,I am not a happy camper.

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Omg! You sound like my wife wrote this! Any way we could talk personally? Please respond! My name is JoDee King, and we live in Missouri.

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I went through 8 weeks of treatment. I had some side effects during treatment, nothing that was not officially reported. However, since I have finished, which is almost a year now, I have had various issues. My energy levels are low, I get low grade head aches which make me unable to focus as well as I wish. I get pains in various parts of my body which come on suddenly and last for days. One of my thumbs seems to get inflamed more regularly than other parts and lately I had an episode where I could not move it much and it was quite painful. My elbow is also troubling me more often than not. When I get ill, it seems to drag way longer than it should now. My viral load was always very low, so my immune system was not that shabby and I had no liver damage. All in all, while my symptoms were not that bad after treatment, compared to what other people are reporting, not only they have not disappeared, they actually seem to be getting worse. I have a very healthy life style and I think I have done everything I could to get better. I feel for you all.

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I finished harvoni almost 2 years ago. I find that i felt better before i knew i had it, cause now life is s***ty. I developed chrons disease since then and had a number of er visits cause of what's going on in that department. Not even going to get on the subject of my mental state. Hep C sucks but sometimes i wish i wasn't forced into a treatment without proper knowledge.

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Re: xanapete (# 99)

My mind is about gone after treatment. It did something to my nervous system.

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