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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.
Replies to "Hello everyone, I've been trying to find a research group that is willing to seriously look..."
hello,
I feel ya, I have a MPH n am a RN n also have a degree in administration...most days I can barely make it to the couch from bed. I have had 4 lawyers turn me down and none of my docs will acknowledge my severe issues. Does anyone know exactly whom makes the interferon n ribaviron? I haven't found anything solid...or if I did, I have forgotten. I can not retain any new info anymore...executive brain function disorder from this!!! Pls everyone...we need to pull together somehow n fight this!! xo
@jwbeenie I have been told by my dr (that I did the treatment through) that there just aren’t enough studies behind the long-term effects of the medication/ medications since it’s still so newly approved. Which he said is why people like myself & others need to make sure they let their doctors know exactly what’s going on & all of the symptoms they’re having. It’s really all we can do at this point.
Certain combinations can cause different long term side effects, he did confirm that. And that if said side-effects haven’t come back or returned to normal within 5 yrs of treatment then, it most likely won’t. But hey, cheers to being HCV free! 🙄
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We need to, this is terrible the way we live now