Long Term Side Effects Of Harvoni (Page 6)

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: Enoughalready (# 4)

My vitamins B12 and D have dropped. I've been depressed. No energy. Pain in my back and muscles. Headaches too. I finished treatment back in 2016.

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Re: luna (# 11)

I am 6 months post, hcv clear, but am experiencing the same symptoms, almost exact. Have just detected a rapidly growing skin "spot" that looks to be a carcinoma. I can't get my doctors to listen. One actually said i was feeling unwell because my job was too difficult for me and the only way I could ever expect to feel better was to quit. I too have been feeling suicidal, as the pain is becoming overwhelming. Where clean i turn for help?

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Re: Dee (# 102)

Do you have family that can help you? You need a doctor and lawyer who will help you get Social Security Disability benefits.

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Re: Elizabeth (# 103)

You can't get a doctor to help because they are in this crap for the money too. They won't admit the medicine is what is wrong with us. I had one psychiatrist tell me the treatment caused my problems, but said he wouldn't testify to it. Disability turned me down.

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Re: Wifey (# 19)

Hi, I am in the same boat. Finished Harvoni last November. My memory is shot. I forget everything and my feet and hands are in pain. Feet and hands are always numb in the morning when I wake up. Does he have those symptoms?

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Jim (# 104) --

My Doc thought I had RA but my bloodwork came back normal. They say I'm vitamin deficient, and that's why I'm numb and in pain. I don't buy it.

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Re: Jim (# 106)

yea and always ask for a copy of that proof about vitamins being low,,,I call BS. No Doctor will admit Harvoni damaged us, therefore no one is looking for what caused those of us having problems after tx, or for what Harvoni did to our nervous systems. I am tired of being in pain

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Re: luna (# 107)

There is a fda site it has mess alot of us up ! Drink water and try everything under the sun to get your helth back do whatever it takes

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Re: Jbw (# 108)

I think most of us have reported to the FDA and Gilead, no one cares what it did to some of us, we may be a small percentage but others should be warned and we should have more help from medical community in finding answers to what tx did to us in regards to disabling symptoms

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Re: Dee (# 102)

The only thing that helps me is talking to God, Jesus, Mary. Praying and asking for help. I may not get a miracle, but I do feel like they know I'm suffering. I just look forward to a better place to go to after this poison has killed me. I truly believe it is slowly killing me. I've done lost my job of 16 years, had to move home with my daughter, found a job sewing in a factory with a $6.00 a hour pay cut so I could at least sit down all day, but it's 10 hours a day, 4 days a week, my joints hurt so bad I don't know if I'm gonna be able to keep it. I can't stay at my daughter's forever, plus I have to give rent money by my son in law to stay here. I've never pictured living on the street in the end from all this mess. If I could've saw ahead, I'd never took it. It almost killed me to take it. No Dr. is going to help. They all say, I don't know anything about this drug. Even Gilead, all the times I called them didn't know what all it could do. By the way, I took epclusa, it was harvoni and something else mixed in with it - it was a nightmare and I'm still in it.

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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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i jsut checked this post after a few weeks. i cant lie i didnt expect this many people to feel the same way. since they talk about it being a mracle issue. harvoni ruend the way i was. i can think straight i agree with all of you. its not right i feel worse than the way i felt before treatment. im plagued with gastrial issues and well it not pretty.

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Hi, I finished my last harvoni Treatment in August and I'm now having major panic attacks. I went to the ER last night during a panic attack and my vision was so bad I couldn't see the road to drive. I've never had a panick attack in my life until harvoni.. Now I feel my life is pretty much me being a bundle of nerves! I sure wish I would have known this before I started treatment!

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Almost three years post Harvoni and still in a lot of pain. The past few weeks I've been experienced hand and arm pain that is like a pressure and a burning sensation and my veins bulge.

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Re: David (# 1)

Hello David. My husband is a post harvoni patient of two years. He has been going to the doctors cause he gets really bad pain in his stomach. He says it feels like someone has peed in his GI tract. Is this one of the symptoms of harvoni? He has been to a stomach doctor and they have gone through his stomach 3 times and they can only find a peptic ulcer. When he lays down for about five minutes then cramping and pain starts. And he finds himself in a fetal position because of the pain. And we keep on telling the doctors and all the doctors want to do is feed him pills after pills. And he was just diagnosed with first stages of dementia. Cause he is starting to forget things. And names. He got the help when he was in Vietnam.

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Re: Lorie (# 115)

It also made me forget names and ways to drive to places. My head is gone now from epclusa.

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Hello, I just found this site. It has been 3 years since I finished my Harvoni treatment. Since then I have experienced severe depression and anxiety. many times I am unable to get out of bed. Most of the time I feel brain fog. I am also experiencing hairloss. I'm not sure if there is a connection with the Harvoni. I have also been having suicide ideation. I see that the last time someone posted was in 2016, but I thought I'd try to post to see if anyone has had similar long-term effects. I am desperate. May God have mercy on us all. I send peace to all who read this.

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This is not a club that I wanted to be part of. 2 1/2 years of hell so far after 'curing' a disease that never caused a problem. 2 days ago my health care providers told me to find a different doctor. Merry Christmas - but go away. Guess I was too much trouble and wasn't thankful enough. Face aches, teeth ache, migraines, hands & feet numb due to ongoing vitamin B12 deficiency, among other issues. I would not have ever believed that I would be abandoned by my HCP after following her directions faithfully. I've given up all hope of getting better. Big thanks to Gilead for destroying my life.

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Re: Scared Mom (# 5)

You will need to be VERY, VERY strong. What I suggest is to call and have him committed, for his own protection.
I wish there was a magic answer, but the main focus needs to be to protect him

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Re: chezbonnie (# 118)

I know exactly how you feel. They can't understand the weirdness going on inside of us, because it is really unexplainable. And they don't care. I know I will never feel normal and happy again, my brain will never work the same. Something needs to be done about Gilead. They have ruined a lot of lives!

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