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I am 10 years post tx and barely have a life. I had 4 years (trials) attempting to clear hep c the 4th year using the current drug (which cleared me) on the market. The first 3 years (attempt/fails) included interferon, ribavirin and an experimental drug. Needless to say, like the others posting here, I have slowly been affected by post interferon side effects until now...where I barely exist every day. I have chronic Epstein Barr as of approximately 8 years ago and have contributed my condition to it. My Osteopath recently ordered an ANA test and I was positive (dictating past exposure to interferon). I don't really know where I go from here. I have spent 10's of 1000's on medical chasing this. I feel for everybody on here...I am living the nightmare myself. Existing is about all I do so fatigued with other weird symptoms daily. Hoping a Rheumatologist might have some answers.
Replies to "I am 10 years post tx and barely have a life. I had 4 years (trials)..."
Not that it helps you, but I've gone through the exact issues and happen to mirror your timeline with Interferon and Ribavirin. My Rheumatologist has heard of this problem, but had no answers for the pain and fatigue that I've had for the last 5 years. Absolute torture!
Hi-so sorry that ur going thru all of this also! I found that no doctor has helped me over the yrs because for one thing, they have no clue about this medication…no one except a GI doc knows n they wont accept the dx of post interferon syndrome…pls contact me as Im sure that I can help u n answer some questions xo
I was on 2 Hep C treatments back in early 2000. Each involved interferon and ribavirin.
The interferon was different each time. My viral load was the target of each treatment since I had a rare genotype
3 of Hep C. Doctor said it would not likely cure me but it will reduce the viral load. They gave me a liver transplant in fall of 2000. I did haveva short treatment of just interferon prior to my transplant in the summer of 2000. The 2 other followed post transplant. I had no lingering side affects that I was made aware of. Then in early 2014/2015 the newer medicines came out for Hep C and I tried 2 treatments with 2
different medications. Finally in early 2016 there was a negitive viral load. By this time I was so sick again that the doctors performed my 2nd liver transplant in summer 2017. Since then no Hep C and the transplant has done well.
I do recall my 3 interferon treatments, 2 with ribavirin. The ribavirin made me real sick both times. I had to work from home since I could hardly walk around, I shook all over, had joint pain, vomited a lot, I felt spacy. My blood cell counts were real low so I was injecting both red and white blood cell
treatments daily. After treatments, after a couple months I felt OK.
This was living hell since I worked in IT and was a database tech guy at work. I needed a clear head and energy to sit and work on 3 terminals at my desk and 2 at home sometimes up to 24 hours during emergencies and large project installations.
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We are not alone. Life is so tough. All this crying and frustration.