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Hepatitis C: Post Treatment Issues Community
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Avatar universal

Anyone who treated with telaprevir (Incivek)

Hi, Haven't been on the forum for many years. I treated in a Telaprevir trial back in 2009 and was cured. It was triple therapy back then with Interferon, Ribavirin & study drug Telaprevir. This Phase III trial was the one that gave FDA enough information to approve the drug. Back then it was the drug everyone was waiting for and helped cure many people including those that failed previous treatments. The biggest drawback with Telaprevir back then was a horrible rash that some people got. Thank god I was spared but heard the rash was very bad and some had to quit TX because of it.

Jumping ahead I would like to hear from others that did this TX and how they are doing today? Are you still SVR? Did you have any side effects that never went away? Personally I never fully recovered and still have some issues.

Thanks
6 Responses
766573 tn?1365170066
I went through triple and praise the Lord I am free of the virus. As I look back I realize just what a huge dark cloud HCV was in my life. I think the cumulative attempts at treating with Interferon probably did have an impact. I am in good health knock on wood.
317787 tn?1473362051
Hey you guys, great to see you! I also treated with Incivek two years after I treated with Interferon Riba and a trial drug.
It took me a very long time to get over the brain fog, fatigue, aching, pain.
I've had a lot of problems over the years, finished in Feb 2012 however I am seeing a light at the end of the tunnel, once again.  I hope this will be it.
I started getting massages last month and the difference is amazing.
I wish I had started these massages years ago.
They are deep tissue.
Avatar universal
Hello I had my 1st. Treatment of interferon and ribovirin in 22010.After about 4 months I stopped. It wasn't doing any help for my hepC. I was soo sick then. But later in 2011 I believe. Hard to remember things now. I started the triple treatment, , interferon,  ribovirin,  and Incevek.  I was very sick and extremely tired ,depressed, and so much more, I wanted to stop treatment many times!! But, The Dr.  Convinced me stay on. So I finished after 1 year. Dr. Said, 6 month testing was negative,  so yeah it worked! 1 year test negative again, but now I'm in Severe pain all the time, my memory is terrible, Psoriatic Arthritis,  Osteoarthritis,  headaches,  inflammation,  recurring respiratory problems,  the illnesses go on and on..... I'm depressed most of the time, when I mention symptoms to my Dr's.  They think it's not as bad as I say and give me another pill to take.. I really didn't put all this together as being possible long term side effects from that treatment. .I just thought in getting older and going downhill quick!! I just received a test result for Hep C and it came back positive with: 11.0H. Results. Its been several years since my treatment but beginning to think all my illnesses diagnosed after ,, are related to the treatment. . Any suggestions for what to do now? ? It would be greatly appreciated. . Should I go back and see my infectious disease Dr's? ?? Anyway there is alto more to tell but I'm so tired!! Thanks for listening and any info would be Awesome. .. I'm new to this forum and I like it already. ..
1 Comments
It's me again, about my treatments ,, the side effects from them were just terrible going through it..I wanted to die I felt so bad!! I guess I'll research those medicines. Starting tomorrow. . Thanks again. .
Avatar universal
Hi Mama,  I think you will always test positive for the HCV antibodies. The only way you can tell for sure is with a PCR test. Personally I think you will still be negative if you completed triple therapy. Of course as long as you weren't exposed to the virus again. As you probably know being cured doesn't prevent you from getting it again.
Best of luck
Avatar universal
Forgot, sorry just realized how old this post was.
5045042 tn?1365893700
I still have painful recurring rash 2and one half yrs later. There are others but this rash takes the cake!
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