Long Term Side Effects Of Harvoni (Page 6)
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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

Those of us who have been injured by Harvoni get little to no help. It is now three years since I took it and speak with dozens of others who also suffer from joint pain, constant headache, neuropathy, hair loss, inability to sleep or constantly want to sleep, lung damage, liver cancer, etc. and all the doctors say is that our problems are not from Harvoni. Really? I was fine before and 12 week later my life was forever changed into misery. Wish I never took it and hopefully those who are considering it will really think about it. Hep C is not an automatic death sentence. I had it for 40+ years and was fine. Can't go back but wish I could!

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Re: Wifey (# 19)

I finished Harvoni treatment in January 2016. I have had systemic inflammation and constant pain in my hands and feet since. Lately the pain has moved to hip joints and part of my lower calf. Sometimes the pain moves in a circuit from feet to hips to hands. I feel like I have aged 10 years. Can't sleep, wake up with stiff achy joints. No energy and cranky when I don't get enough sleep. I have been to GP and other doctors who don't know how to help with pain. I was taking a 5mg Oxycodone, 100mg Celebrex and 5mg Cyclobenzeprene along with a 10mg Ambien. Worked for awhile. Now I am having to take10mgOxy,200mg Celebrex no Cyclo and Ambien. Works sometimes. I found a natural pain reliever called Kratom. it helps sometimes. My worry is what do I do when the meds no longer work? I have started fighting the inflammation by eliminating sugar and red wine from my diet. Also working out at the gym and water aerobics. Tired of poor sleep and daily pain. Where do we get help?

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

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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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Re: Orren (# 139)

It causes Neuropathy. The burning pain in your feet. So many people have gotten it after treatment. Take ALA. (Alpha Lipoic Acid) it's a wonderful anti-oxidant. ...and you can take up to 300 mg. a day. (start at 100).it helps blood sugar, too. good luck. what awful symptoms!

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Re: Candy (# 156)

Do you also have low back pain and knee pain? Any other problems?

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Re: Candy (# 156)

try getting some cramp defense brand magnesium, It did wonders for my muscle cramps, although I still have terrible back pain, my gut is just not right, can't eat much at a time, ears still ringing and my vision is getting worse

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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: Dale (# 153)

Sounds like you and I are experiencing the same symptoms. Since taking Harvoni, I have arthritis, post exertional pain and fatigue (shortening of the muscles), lack of flexibility, and have been diagnosed with fibromyalgia and chronic fatigue syndrome. I’m now receiving SSI benefits. I’m coping with all of this by eating only organic food, taking vitamins, ingesting gelatin, going to a therapeutic pool to exercise and recovering from that exercise. All I can do is cook, eat, rest, sleep and do gentle exercise and stretching in a therapeutic pool and hot tub and I do self trigger point massage with a thera cane. I’m also starting hot/cold treatments. I heat myself up in a sauna and then I take a cold shower and I repeat three more times.

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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: 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: 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: 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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EnoughAlready (# 147) --

I am so sorry to hear that. I wonder if you could tolerate a liquid as opposed to a sublingual tablet. The tablets seem to have fillers and a lot of sugar. The brand NOW has a liquid B12. (I am sure there are other brands, too. Just wanted to give an example.) Another option might be to have your doctor appeal the denial with your insurance company. My neurologist had to do that when my insurance company denied coverage for my MS medication. The appeal process wasn't necessarily fast, but my doctor's office was familiar with the back and forth nature of the appeal process, and I was finally able to get coverage. I wish you the best.

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EnoughAlready (# 147) --

I can't take it either as it does the same thing to my brain and can't keep it calmed down as it is now.

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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: Rian (# 146)

I tried vitamin b, but it made my head have more tingling and anxiety in it. Something I never had before epclusa.

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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 (# 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: 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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