Long Term Side Effects Of Harvoni (Page 6) (Top voted first)

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: Elizabeth (# 130)

what did your fibromialga specialist do for you? I think harvoni caused me to have the symptoms of it, weakness, lethargy, chronic fatigue, severe back pain, feet pain, head ache, ears ringing, symptoms or RA, digestion issues, bloating, constipation, the list goes on

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Yes I was taken harvoni in early 2016 for 12 weeks about 4 weeks into it all of a sudden I'm throwing up black stuff then every time I would walk this blackness would come around my eyes and the doctors would just say anxiety well all of a sudden I had a spike in white blood count got sent to a cancer specialist my iron was bad they said I was bleeding somewhere well all of a sudden that eased up out of nowhere I try to walk and it feels like from my calf down to my feet are burning beyond belief and that's still going on today it's eased some however still have unbearable days the reason I believe it's harvoni based is I never had this problem before taking it also I forgot to mention earlier when I talked about the blackness coming over me my bp would be 160/ 103 pulse 100 like I said problem I'm still having 2 years later is the feet thing with the burning also they get nots on bottom of feet when this happens I get bed ridden I'm only 28 doctors say it's nerve damage I have a very hard time believing that for the fact it just started out the blue while I was on harvoni

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Re: Skpp930 (# 120)

Until very recently, my life was completely ruined by Harvoni. Debilitating depression. Suicidal thoughts all the time. So much psychiatric pain. What helped me is finding out that Harvoni depletes the body of magnesium. I then found articles linking magnesium deficiency to depression and suicidal thinking. I started taking magnesium supplements (and following a high fat diet... think Bulletproof coffee), and I am getting better. I know it sounds strange, but I wanted to share this in case it can help others. Maybe there are other nutrient deficiencies caused by Harvoni, too. Maybe different people need to focus on different nutrients. I hope this helps someone. I know the hell of depression caused by Harvoni. No one deserves that.

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Re: Skpp930 (# 143)


Statute of limitations varies by state. Some are one year, some two and some three. Attorneys are not stepping up because the science does not prove all the damage we have experienced is related to Harvoni. It doesn't seem to matter that there are hundreds of us who are suffering permanent damage and some who have died during or after taking Harvoni. We continue to try to make Gilead accountable but they are too big and too strong and attorneys won't take on something that is not a slam dunk. Too expensive.

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Re: Rian (# 142)

Thanks so much for the recommendations. I have upped my magnesiium intake as well, and it has helped. (I did it because of extreme constipation and magnesium helps that) Oh, I've heard that Harvoni depletes Vit.B also. I use lozanges that dissolve under the tongue.

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Re: Candy (# 145)

Luckily, I was taking enough B vitamins, especially B12, so I didn't have any issues with vitamin B depletion due to Harvoni. I just wish I had been informed about the depletion issues. I think we have a right to know how a drug will impact us.

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Re: Rian (# 146)

I am Vit B12 deficient since treatment end three years ago. I can't take the sublinquals your using. It's like pure speed for me. Way to hyper and can't sleep even if I take it in the mornings. I need injections and my insurance won't cover it. Can't afford them.......so I am sick very sick.

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Re: Dee (# 102)

Now 9 months post, and my life is ruined. I really don't know what to do. I had the lump on my scalp removed (benign), but I get painful bumps on my scalp that last for weeks for no reason. I am getting ready to have surgery to see if that can correct some of the pain in my back and legs, have been undergoing spinal inj's. for 2 months now. But they cannot explain the edema and blackening/bruising of my lower legs. My hematocrit is high, my creatinine is high, my calcium is high, my BUN is high. My blood pressure soars for no reason, (176/128), my vision sucks, it is like having a grey curtain that moves back and forth across your face. My heart feels like it is having to work triple time. Food has no taste. I can't remember anything, I find myself fuguing out for hours. I'm not here anymore. I am not depressed or suicidal. I simply have no survival mode. 2 seconds away from losing my job and I have no ability to focus long enough to figure out what is going on. I live by myself. I have no one here, I moved here for the job and the only people I know are the people I work with. I just can't seem to figure out what is happening to me.

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Re: Dee (# 151)

I was the same as you as far as being alone and I did lose my job of 16 years & had to move back home with my daughter. I'm not as bad as you are, but I can't function by myself like I could before. I have alot going on with my body, but mostly it affected my brain & nervous system. The worst part is to imagine getting messed up and it not getting right. I just keep praying and asking God for help, I hope a miracle happens for all of us.

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

I am Inot pain most of the time and I always feal tired

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Re: Rian (# 150)

On forms of B 12....found out this week that it matters what form you take. - the one with Cyanocobalamin is NOT the best. Heard the liver works harder to assimilate with that one. The "good" kind starts with Methyl - something or another. I forget. But I'm ordering it today. I use Vitacost online . Recommend. great customer service!

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Re: Elizabeth Faraone (# 155)

thank you! I'm 7 mos. post treatment...and a major discomfort is what you called "shortening of the muscles"..that's it exactly! when i try to stretch my calf muscles, it hurts like hell and doesn't want to budge! I figured I'd try stretching in a pool and get it a hot tub whenever possible. Definitely from the Harvoni. I was fine before.

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Re: luna (# 11)

It has been a year since my treatment. Main side effect is severe - but not migraine - headaches in the morning usually about 5am - Advil helps. These are the same headaches, but not as severe, as I had during treatment.

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Just read your post and really hoping for an update. Hope you are well

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Re: Doug (# 165)

I have all your symptoms too. It's almost like all your insides are vibrating all the time. My mind feels like I'm in early Alzheimer's disease. What do we do? I've talked to lawyers and they tell me after a certain time period you can't do anything about it. I had a job for 16 years, lost it. Have had 3 others and my brain just won't work right. The crazy neurologist said all my cognitive tests where very low, that I needed to change me diet? Never had a problem till I took epclusa. All these doctors don't care, they don't listen, they SUCK! I wish they had to take it, see what they think afterwards.

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Re: Doug (# 166)

Doug, order your self some Cramp defense magnesium, you can google it online. It is the only thing that has helped my leg cramps from Harvoni, I thought I was going to be a cripple from the leg cramps and feet, I still have many other side effects of the treatment but at least this one I was able to deal with by taking this particular magnesium supplement, It is worth every penny

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I'm so sorry to read all of these comments, but at least I know I'm not the only one. Neuropathy, tickle/tingling feeling in my chest, legs etc. Can't sleep w/o 5-10 mg of oxycodon. Magically went from stage 3 to stage 4 and all the Drs do IS BLOW ME OFF AS THOUGH I'M PSYCHOTIC. THEY refuse to listen to the reality that the drug has long term side affects. We can't do a whole lot now, but at an appointed time, the money lovers will have to face God. HAS ANYONE HERE HAD A LIVER TRANSPLANT POST HARVONI?

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Re: Doug (# 166)

Same thing here. The doctors say I'm crazy period and that all my symptoms are because I'm getting older. I've aged 10 years in 6 months. That's getting older! On the fast train to hell. It's hard to believe I was out camping, shooting at my gun club, working on my truck and riding around on my HD. Now I sit in a broken-down recliner day and night. I have to sleep in the recliner because I can't sleep in the bed. I've been to the doctors, neurologist, you name it. I'm labeled as one of the crazies. They say I'm drug-seeking and there's nothing wrong with me and yes it does go into your medical file and it gets worse! When they do that, you get red flagged at all Hospital and doctors offices as soon as they look in the computer they see the red flag. That's near a death sentence for us. My own doctor has refused to treat me because U Mass Medical Red Flag me, and now I'm left on my own. Don't try to get any benzodiazepines to help the anxiety and panic attacks. Most likely they will say you're an addict and that's why you asking for them. I want these people to be in our shoes. Let them for one week and feel what we feel in our bodies and our brain. They would change fast. Funny I came from a city and I met doctors, neurologist and police that are hooked on Heroin, cocaine and benzos. True story. Even a federal Marshal. I've seen it all, but we are the ones that get treated like crap. That's all I have to say about that. Once you are red-flagged because of your complaints, you might as well be dead, because nobody's going to help you. Sorry.

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Re: Doug (# 173)

I ran into the same thing with my doc....I am crazy. Funny....we all can't be crazy and I have talked to over 150 people injured by the drug. What I did was get a copy of my docs records and then request that whatever was incorrect or false be corrected or removed from the record. I may also suggest you file a complaint. My doctor wrote in my records that I was bi-polar, OCD and delusional. First of all, he is not licensed to make that determination. When lies affect you in negative ways, you can check with ACLU or any attorney and see if they can help. This has got to stop....treating us like lepers when it was the dang Harvoni that destroyed our lives. And by the way, there are now reports that Harvoni is "suspected" to cause kidney injury so all who read this, please be aware. Gilead will pay the piper at some point.

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I am now more than three years post treatment. My body still feels locked up. Little flexibility and tremendous stiffness. Pain continues. Chronic fatigue. Hard to live. Would be nice if a study were conducted in those of us with long term adverse effects. Would be nice if I had someone to help me with my chores. I live alone.

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