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Post Interferon Syndrome

Infectious Diseases | Last Active: Oct 7 9:13am | Replies (536)

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@chasguy

I'm happy to have found this site. It's nice to know that you're not alone with post treatment issues. The old adage of "misery loves company" certainly applies. I read through all the posts and can relate to so many of the comments.

Apparently I had Hep C for almost 40 years, which went undiagnosed until my health started deteriorating to the point that I had to go on disability retirement. By then I had stage 4 cirrhosis and hepatic encephalopathy had started setting in. My gastroenterologist had wanted me to hold off treatment until the new drugs came online, which were in testing. Unfortunately, as more time passed he didn't think I should wait any longer and so I ended up going through the three drug cocktail program; interferon, ribavirin, and something else I can't think of at the moment back in 2011. That treatment program was to last a year, but ended at about six months because those nasty drugs were killing me.

Eight years later and I still have a lot of issues; pain, fatigue, nervous system issues, forgetfulness, brain fog, etc. I will admit the pain has reduced over the years. I quit taking pain meds two years ago, although I still have days I wish I hadn't. Pot helps the pain a bit, but definitely turns me into a couch potato with the ongoing fatigue issue. While these nasty drugs have cured many people without long-term complications, it appears there are a number of us that experience long term, even perhaps permanent, side effects.

Although I was taken off treatment early, it did clear the Hep C virus. But at what cost? There's no way I could possibly go back to work and maintain a job. I'm sick of seeing doctors and specialists for these ongoing issues so I don't see them any more. I just live with ongoing side effects and do the best I can. The only specialist that really provided any post-treatment help was the pain management specialist, but the Oxy Rxs only alleviated the pain symptoms and weren't a remedy for the underlying problem. I want to be whole again. I feel like I'm less than half the man I used to be.

That's my abbreviated story. I just thought I'd share it as it soothes the psyche a bit to know you're not alone dealing with long term health consequences. Best wishes to all of you.

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Replies to "I'm happy to have found this site. It's nice to know that you're not alone with..."

I'm of the opinion that all of us should have access to pain medication until the day we die, but that won't happen with the insurance i have. I'm also of the opinion that the doctors who treated me should be paying for ALL my medical appts. because they did not follow.protocols a physician was to follow in treating. My obit has both their names in it. I feel half of what i was too.

I've had 3 friends who died because they refused to take the medication. I have never met anyone who did not suffer long lasting side effects.