Harvoni Side Effects (Page 22) (Top voted first)

I have been taking Harvoni for 3 months now and am having nerve pain in my legs and lower back pain. Is anyone else taking Harvoni having any of these same side effects as me? Please help if you are able. Thank you

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I am looking it up now. Hope it comes up on google. With brain fog it's not too easy. I asked about the mechanism how this works and they kind of got a scared look on their face. Wow I feel like I became the dragon. Do we go back to normal?

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I agree we are not children. The only reason I can think is control.

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This message is for Cat. I recently decided to pursue treatment, probably Harvoni. But after reading your post, I'm not so sure. Many others are complaining of back, leg, and joint pain. One person said nothing came up on tests. I'm concerned about damage that won't be found for a while and is not reversible. These drugs are changing things at the cellular level, so who knows what else is affected. Anyway, can you provide an update on your health status? I hope you were wrong and did not have cancer or any other serious problems. Take care.

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I got hep-c by air gun injection in Germany in 1980. It's the genome number that helped me find out it was the Army. I have geno type 1 rare and hard to cure. Genome 1 is found in Europe and parts of Asia. I have left the USA one time and that was to report for duty in Germany. I have service connected disabilty for the hep they gave me. I'm going to ask for 20% more service connected disabilities. I have developed non malignant skin cancers all over my face because of my liver not to mention bein so tired all the time. Good luck with you're search. I hope I helped a little.

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I have been posting all over. Some of my posts might turn up on this board thinking I was on a different site. The more I read the angrier I get.

The support groups I was on didn't want any negative vibes, denial better, but I get it, they are pushing through treatment I don't know if I would want to hear someone's bad sides. If you are halfway though the likely hood of stopping is null.

I am the only one I know of so far that went off, but Chepfree is correct there are many sites and I am reading now hundreds of serious post treatments that is scary. This is permanent. I always thought men tolerated this better then women and shook it off as more muscle mass, its complicated but the levels it raises are similar to our bodies natural steroid. I never knew brain fog and short term memory till this drug that I call poison. Today is a wk off and I am relaxing and just now does it feel like I can concentrate. I think their goal is to make as much money they can and if and when the litigation comes in they will deal with it.

We like to think when we see a doc that first do no harm. Its our responsibility to share our experience good, bad or indifferent. Education is power and it might save someone's life. WE took the damn drug not them. I will never forget how relieved I felt when someone on here supported my decision to go off. Looking back I was headed for a heart attack or stoke. The way that was minimized was appalling.

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Thank you for also not enabling the decieit by big pharma. I found myself with severe burning eyes all day and tinnitus after only 2 wks I can't imagine 90 days.
On a good note I reported sides to FDA and was told if they continue to receive complaints they might have to reevaluate. If it keeps just one person safer then it's worth it. Thanks for the encouragement "we" are in this together.
Yep what's up with the control and not allowing pts to interact we are grown people? Be well and keep up the good work. I hope we are all healing.

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I would like to know if there is anyone who has NOT experienced other than the usual headaches, some weekness and tiredness. WOW, if I would of listened to all the sad
stories I'm reading, I might not of started my 3 mo. treatment. Just like to be different here and hopefully will read that this doesn't effect everyone. This medicine will NOT
block your biale duct, or cause near death experience. I'm thankful to say that I'm now starting my 6th. week on this stuff and only had a few headaches & some heartburn. nothing that a 600 mg. Motrin & a cold bottle of water cant handle............
It dont make sense why this medication causes nerve damage. I have some minor nerve pain in my rt. foot & neck. & hasnt made a bit of difference. Oh by the way..... Im a cancer survivor.....Praise God, with a colostomy......................... 6 more weeks !!!!!

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Thank you! That's what some of us want to hear. Keep in mind we all began the treatment thinking that would be all we would experience, sadly it was not ours.
Good luck to you and God bless, if you want to read how it interacts on your CNS Google and read. Only out of desperation were some of us driven to research why me?
Again it could be that all of us are different but if you had a heart attack, or were crippled it would be a different story. Happy healing and please keep us posted with your continued recovery.

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Than you so much for follow up. I appreciate your honesty and wish you health and healing. Just wondering when or if you discuss those issues does your doc validate them or do you feel dismissed? I still believe men tolerate this easier then women.

Best to you!

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Thank you for that information. when I go to the docs today, I often feel like they are hiding something and (we) the patients have to figure it out. Whats the elephant in the room? Who is a docs worst nightmare? An educated or enlightened patient.

Now the WHY? Why are some people not affected and others are? Do they just not know it yet? I wish us all good health and I hope that we are more then a certificate of a viral load and an insurance payment for the med. Its awful to think that way, I have my reasons.

Please, let us not find out that somewhere down the road this is going to come back to bit us in the arse. I get it if you are very ill it could be a lifesaver or maybe not. As you wrote that, I swear my ears are still having issue with ringing, my eyes were so sensitive to light I lived in sunglasses even around the house and the dryness was remarkable. I felt as if I was going blind.

Not sure I understand the mechanism of the CNS or how changing RNA affects nerves its complicated. I did tell my doc what good is a certificate of zero viral load and a bed in a mental institution. its not funny, this is heavy duty medication but is it safe? Prayers for us all.

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Hi, Tony. I am wondering if genotype makes a difference. Do you mind sharing which genotype your HCV is?

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I want to add that I did read that Harvoni was fast tracked, according to FDA information. I was finally ready to go for it, until reading here and on other forums about the after effects. I don't mind side effects during treatment, but some of the after effects are worse than how I feel with HCV. I found out about a nutritional supplement called Viusid from Madrid, Spain. The FDA seems to have shut down a web-based seller in the U.S. I found a report on Viusid's effectiveness on HIV in African countries, too. It doesn't cure, but it restores health. I finally ordered some via an international pharmacy site. It only contains antioxidants, but is being blocked here for some reason. Maybe big pharma doesn't like nutritional supplements that help HIV? If anyone else finds additional info on Viusid, please share. It's an elusive product. They also manufacture Viusid for veterinary purposes, immunomodulation for livestock.

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You know it's odd, many people that have hep C test positive for RA yet upon further testing they say we don't have it. Why test positive? Now the virus cleared and the symptoms worsen? Makes no sense.

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I now have a paper from MedWatch that the FDA safety report was received.

We have to do the work, fill out the forms and submit reports on fda.gov/Safety/MedWatch. I encourage all who are having side effects from any and all med's to submit a report or call and they will send you paper work. We have one life, let's try and be safe. For them it's money for us it's our life.

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Can some of you share your genotype? I'm still on the fence about getting treatment and wonder if those with the nerve and muscle pain have a commonality.

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I have geno 1a. Regarding litigation it's up to the attorney to find a professional to testify. Most lawyers don't want these cases unless people are blind, crippled, or dead.

My instinct tells me eventually if we keep reporting there will be a litigation of sorts. Too scary to think of. I feel "different", tired, weak, and nausea all day. In addition I have ringing in my ears on and off all day, muscle skeletal issues exacerbated had to amp up my pain med's that were stable for over 4 yrs and double my b/p med's. This is all from just 2 wks of Harvoni. I hope it goes away but I feel old, I knew and said to doc why rock the boat I am just beginning to feel better. I really feel like they think this is a joke, almost as if it's some form of ethnic cleansing not anti viral. I know that sounds harsh there are reasons for my thinking that. Please, please report sides to FDA not Gilead I agree they are the problem not the solution you will get a letter of recipes from them what they do with it is another issue. Peace and healing I wish I knew what happened why some and not others or is it a yet, nothing happened to them yet?

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That's true the ACLU had to request via FOA what the real results were of trials.
Only 650 ppl were used that not a lot. In addition I would bet that most were withe dual diagnosed HIV-hep C so probably quite ill. Most ppl go into trial when it's the only game in town aka out of aces. The FDA should do follow up once drug is approved but you said it, they push it through because it's a $$ maker. In addition the "subjects" or reason for the price gauging is research. These ppl were the research! Let's continue to stay connected, report any changes positive or negative and best wishes for good health to all.

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I agree no one paid out of pkt for theirs . I have half a bottle of wasted med's and my doc as the other 2 imagine that!

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JOHN357: Well I have United Healthcare, and it is crap. They want to pay for 20 percent of it, which still leaves me with over $70,000. So I guess I'm SOL. PEACE.

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United health insurance is one of the worst! I work with patients and health insurance and am familiar with who's good, etc. Unfortunately, United covers the military (ex GI's).

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