Long Term Side Effects Of Harvoni
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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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REPORT

Hi, I was treated with Harvoni in 2016 and still have severe side effects (brain for, memory issues, fatigue, photophobia, muscle pains). I was healthy prior to treatment (aside from HCV that really wasn't bothering me at all and only found out about it when I was tested). Was anyone who may have had similar issues diagnosed and can you tell me what the diagnosis is? Also if anyone has similar issues, or if anyone can suggest where to look for help, I would greatly appreciate it. Thank you all!

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I know this is old but my uncle had treatment and I'm sure it cause him to become schizophrenic you have been diagnosed and he has to take medicine it just happened I don't know where he went nuts did you ever figure out anything on this cuz I would much like to get this investigated .

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Re: Marie (# 14)

Hello All, it’s March of 2023 now! Still to this day have tinnitus, though a neurologist requested a MRI and requested me to take a supplement called “Vinpocetine”10 mg to support Brain Blood flow ! It is in the Brain! I still get constant steady low ringing & sciatica is new for the past 2 years now, nervous system acting up again! I’m going for Physical Therapy now! And I am awaiting for approval from my insurance for a MRI . Since the
X-Ray diagnostic test stated on the Report that an MRI is needed in order to get a clearer image! Boy Oh Boy!

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I took harvoni in 2019. I had hep c for 33 years. After the Harvoni I thought I had a little more energy....but about 9 months later i was dragging around just to do the basics. This just got worse and worse. Every time i looked up post harvoni messages they were testimonials of how great everyone felt. I knew that was big pharma. But it wasn't until I stumbled onto this site that I got the truth. I feel TERRIBLE! I live on sweets and coffee just to have enough energy to clean my room!

I'm just constantly exhausted. I wear a back brace just to stand up straight. My joints hurt....which they never did before...i developed trigger finger in several of my fingers that is not going away. I got a large bone sticking out of my heel that has something to do with my heel. Worst of all my memory went out the door. I cant remember at night if i took my morning meds. I can hardly remember what day it is. I misplace things 3 minutes after i use them. I truly thought it was hepatic encephalopathy...

But I'm suppose to be cured of hep c right? I cant spell or do math anymore...and whatever is going on its getting worse. I've been making preparations for possibly being so weak and exhausted in the future that i'm not getting put of bed...i bought wigs and had my make up tattooed on. To top this all off ... I have had bipolar for 40 years. As soon as any medical doctor sees that than instantly all my problems are mental and not physical. I know the difference between mental depression and physical weak.. exhausted.. confusion!

I'm at home constantly ....trips to the market have to be planned ahead. If i didn't ask God to help me with every little thing id most likely die under a bridge.

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Hello i took harvoni in early 2015 and over the years I've noticed my muscles seem like they are diminishing despite my constant workout sessions and also my hair is falling out like crazy! I have half of the hair that I used to have. I just turned 40 years old in January something's wrong I know it has to be that I've I didn't even have any liver damage from the hepatitis c I took care of myself all the years that I knew that I had it I drank green smoothies I ate a vegetarian diet I exercise and I wish to God that I never would have took harvoni

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Re: Skpp930 (# 242)

I agree with everything you said ,it's so frustrating I try to explain to my dr about what I'm going through ,but all he says is "IV read there's no serious side effects with treatment ,all the experts like Gilliard pharm say it's a wonderful cure,so he doesn't really believe what IV told him, omg ,wish I'd never touched it I felt ok pre treatment.what part of the world are you from??

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Re: Kathy (# 250)

Thanks Kathy please take care, you are not alone.

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Sorry to hear about your experience,I'm going through same hear in Australia swollen numb feet nausea breathing problems heart issues swollen stomach ,I feel I was better pre treatment with epclusa( similar Harvoni) nil support ,drs know very little about DAAs,seems new problem every week,all the liver so called experts can do is blame it on how you enjoyed your life.wish never touched it.take care.

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I finished treatment in April. I am having a difficult time. A lot of the same symptoms as others but I get so angry at nothing. I cannot control it until it’s to late. It’s just not who I am. My wife is at her wits end.

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I'm 68 yr old finished epclusa about 3 yrs ago ,IV had nothing but problems since finishing treatment epclusa harvoni very similar ,numb feet toes are a mess swollen stomach many infections every week something new now asthma breathing problems which could be heart related ,no support my 30 yr old dr has no idea about it ,wish never touched it hep C drs are liars.

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You're not alone. I finished 8 week treatment, Harvoni, early 2019. I have constant ringing in my ears, headaches and vertigo, balance issues. I can no longer exercise,walk long distances, etc. Taking care of myself, daily tasks are difficult. I can't get any answers from anyone in the medical field. Very frustrating and scary.

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I'm in Australia ,I finished Epclusa treatment same as Harvoni 2yrs ago ,I feel as if IV been thrown in too hard basket , absolutely no support ,since doing treatment I have deteriated in many ways my life is now not worth living I felt better when I had hcv ,now I have no energy breathing issues COPD nerve damage nausea numb feet sores infections ,to name a few things,if had my way would not touch there super meds ,it's just all about $$$ Gilliard don't care not help ,i know of 6 people who have died since starting there wonder DAAs miracle crap.

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Re: zina (# 17)

Thanks a Gazillion Stars Zina I will look into all of what you suggested! With Gratitude Thankful for your input! 8-D

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I read your post and as I was reading it, I thought it was a prior post of mine! I went threw everything you have gone threw and more now! Looks like we were on the treatment at the same time! I thought I was losing my mind! People have also died, ended up in mental hospitals, ect! My long term effects are neuropathy in both feet, vision loss, severe nerve pain in my thigh, migraines, insomnia, and much more! I surely hope you are better! I would never had gone on this had I known! If you ever want to reach out you are not alone! {edited for privacy}

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Hi I had a brother die of cancer of the liver after he took Harvoni. They did not tell him cancer was a risk. Also he was told he had up to 6 months to live. He died 12 days after he was informed of the cancer. I have not been able to get anyone to help me with why they have him the medicine knowing he already had liver problems and people were dying from taking the medicine. He said he would of never took it had he know it had a risk of causing cancer. I really think my brother was used as a gineau pig. I fell like the doctors should of known that he had days left to live. I feel like my brother and family should something for the loss of his life. He would of lived longer if he did not take that medicine. I just wanted to share this with you so you know your not the only one who had awful results from taking Harvoni.

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Enoughalready (# 246) --

same here. pain beyond pain and stomach issues, skin cancer

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Re: Audrey (# 245)

Yep I am over three years post and nothing is the same anymore. Bad stomach daily, pain beyond pain..... Fleming Law is taking Harvoni cases.

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Re: Lorie (# 232)

Me too. Post Harvoni I have had nothing but stomach trouble. It has taken so much out of my life. If anone starts a class action suit, please let me know. I am IN.

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Me too. And I am over 3 years post Harvoni. My stomach is trashed, my memory is also not what it was. I also was on the old peg/riba and I too got so sick they took me off. I had pain in places where I didn't know you could have pain. I feel worse now than when I just had hep C. I did clear the virus (after 26 weeks) but it seems there is quite a cost.

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The law firm I contacted won’t be representing me based on a positive for Sjogren’s Syndrome (despite my doctor stating in my medical records that one point above the normal range is not a positive result) and a high viral load of the Epstein Barr Virus (isn’t it highly possible that Harvoni reactivated the virus, as it is known to reactivate another virus, Hepatitis B). The symptoms I’m having now started when I was taking Harvoni and it is not clear to me or my doctor’s what is causing these symptoms and so I have been given the diagnosis of Fibromyalgia, osteoarthritis and CFS.

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