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Nov 21, 2018 · Post Interferon Syndrome in Infectious Diseases

Hello everyone, I've been trying to find a research group that is willing to seriously look into the issue of long term side effects of interferon. It seems that post treatment there are a high amount of Fibromyalgia, Sjogrens, Chronic Fatigue syndrome, and CVID diagnosis. I have written letters and spoken with my gastroenterologist regarding these issues. His response was that there is no known research stating long term issues. Which in return I actually showed him forum after forum of frustrated people with all the same symptoms and said, "this can't all be a coincidence!" If there aren't any studies on this then How do I get one started? All of our issues began with interferon tx. If anyone on here is interested in helping get some serious research on this or has any info or ideas please let me know.

Aug 8, 2018 · Post Interferon Syndrome in Infectious Diseases

I also want to add that its ironic that a large amount of people post interferon all seem to be getting a Fibro diagnosis. Isn't that odd?

Aug 8, 2018 · Post Interferon Syndrome in Infectious Diseases

I went thru treatment with intron A in 95 and then again with ribavirin and peg interferon in 2010. I'm SVR now and clear but this year is the first year I've felt some (but not much) improvement of my brain fog, malaise, bone aches, joint aches, and everything else. I was tested for everything under the sun and was finally diagnosed with fibromyalgia and myofacial pain syndrome. I spoke with my gastroenterologist doc and my family doc about long term side effects. They said there was no evidence of any documented. I showed my gastro doc forum after forum of people who had my symptoms and said I'm not going crazy and how do I get someone to study this? I still dont feel like i did prior to treatment and have widespread pain. I often wonder if my symptoms are from fibromyalgia or from the interferon? There are so many hep forums where 50% of the people complain of long term problems that are all similar. Oh ya.. my eyesight is also shot now too. Happened rapidly the first 3 years after treatment. Just sayin. I hope we make enough noise to make a difference and get someone to HEAR us. Thanks!