Hepatitis C: Post Treatment Issues Community
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Avatar universal

So anybody having long term effects after using harvoni

I did 12 weeks harvoni for hep I had like 20 years last april. I year later BIL hand numbness tingling. Just recent lost muscle strentgh. Intense itching episodes. It's like I have turrets. Itching is systemic. And folliculitis scalp issues. Which if anyone knows what that's like. They understand. That right there consumes slit of my time. I kept a log of how I was feeling on tx. Symptoms start 2 to 4,was in.  And are worse now. I called Rx gilead my drs and email FDA. ALL STATES THEY will document my findings and this was months ago. I last had blood work and saw liver dr in July. Hep c non detective but then told I now have cirrhosis. Which I did not not prior to tx.  For years was depressed not knowing how I even got hep c. I do tattoo. Who knows and I thought man to live a life without hep c. I dreamed of it. So when I told now cirrhosis nothing changed. Now I have these other issues and no one has ever said if due to harvoni. So I did miss f/u with for Jan 2017 as no longer could afford cobra. I was. Lpn for 20 years. Applied for disability. Have appt with those drs this month. Mental and physical.   And yes I gave both. My lif has changed I don't go out much itchy fatigue bald spots head  from folliculitis did see pcp December gave me abt and neurontin neither helped. I do lots bath and rx and over hair stuff. Can't hold a pen sometimes open things. So liver dr wants me to see him soon hopeful for disability. Just labs alone out of pocket are 900$. I broke in every collection agency single mom of 13 year old living with my 84 year old mother whose still taking care of me when it should be other way around. Well I guess wait fir few years for that commercial. You know    HAVE YOU OR ANY ONE YOU KNOW TAKEN THE MEDICATION Harvoni. My eyes burn and as  I read brain fog. I believe I have it. At least I got my mom doing the rosary and always telling me PRAY FOR HEALING THRU JESUS
8 Responses
317787 tn?1473362051
Hi I didn't do Harvoni but I see you have been waiting for an answer. I think it is possible that these side effects are due to Harvoni.
I have seen others have problems afterwards. To me your side effects remind me of when I finished Interferon. I had brain fog and my eyes were very dry. I had to use eye drops.
I saw an article about Yale suing the FDA for raw clinical data so that doctors can make a better decision on what they want to prescribe for their patients.  What that means to me, just another patient like you, is that doctors are thinking that not all of the clinical data was released.  I think they are having problems. Just a naive opinion.
I''l get the article
317787 tn?1473362051
317787 tn?1473362051
317787 tn?1473362051
Sorry for all the messages, I wanted to let you know that the last article has other peopls's experiences at the bottom of the articles.
I mainly wanted to say,  you are not alone, there are others.
That's why there is a law suit.
Doctors are saying the drug was approved so quickly that there wasn't time to learn about long term problems so they want raw clinical trials.
I wish you the best, Dee
Thank for response I new to these forum first quest I posted so I did ha appt today with disability dr mental and physical   Mental doctor was nice and states of course I should have some depression and anxiety d/t post harvoni issues as I call them. And physical dr had me touch my toes raise my arms. Had no clue really why I was there and when I mentioned. Harvoni tx for hep c and s/s started 2 was after med 1 year ago. Never heard of these s/s from anyone on harvoni.  (Really) offered him info I had printed he was not interested and how s/s will usually go away so what do I do meantime.  Yes he could see I had issues BIL hands pain and loss of muscle strength. My uncontrollable itchiness he says liver us rejuvenating. After I was told 3 bld test in all no hep c but now cirrhosis
683231 tn?1467326617
Hi Domco

I treated in the past for hep c with interferon 3 times but unfortunately it did not work. I was diagnosed with cirrhosis in Jan 2008. When the new meds were approved I treated with Harvoni and was finally cured of hep c 2 years ago but because of all the liver damage due to many years of infection I still have cirrhosis.

The good news is that with cure our cirrhosis may begin to improve with time.

Also, itching can be caused by cirrhosis. Some people try using oatmeal soap or soaking in oatmeal baths soaks.

How were you diagnosed with cirrhosis? Do you know your MELD score? Are you seeing a hepatologist associated with a liver transplant center? Not to say you are in need of a transplant but doctors at a liver transplant center are best equipped to follow patients like us with advanced liver disease.
1689583 tn?1387755994
2yrs post harvoni hair loss depression
29837 tn?1414538248
I will say I never had cataracts before Harvoni. I noticed my vision got blurry after treatment and never cleared up. In the past three months, about 2 years after the treatment, I had both cataracts removed. Coincidence?
I personally say yes coincidence
I also developed cataracts 2 yrs after treatment at 58. It started in the left eye only and then suddenly vision took a dive in both eyes. My optometrist thought that maybe I had become diabetic but that isn't so. Im well below 100..... itching and dryness in my left eye especially but now both. My vision had actually improved a great deal pre treatment and my eye doctor thought that was great.... after treatment I was so tired that I wasn't wearing g my contacts and I thought I just needed new glasses. Anyway that's the least of our problems.
My eyes are worse but, hey, we're older and that's what happens when you age. I don't think it has any connection to Harvoni
Avatar universal
I did 12 week treatment with Harvoni for Hep C. Now cured of Hep C Yeah!!! I did experience hair loss that is not returning....I constantly have itchy feeling throughout my body and scalp.(drives my crazy )sometimes feels like being picked with tiny needles from the inside. I keep getting a reoccurring rash on my neck and chest, which itches. I never had any of these issues until I used Harvoni, I am sure they are the cause. I've been going to a dermatologist..no results he suggests an allergist. I guess I'll try that next. The rash has discolored my skin. Anyone else experiencing this?
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