Hi, there are none here either...im making noise right now...we will be noticed...if anyone wants to connect via ph or email pls let me know. i have found peer reviewed journal articles n other things...u need to start some noise there!!! together, we can do this!!!! i would be happy to share with u!! xo
1995 Intron A for 6 mos. Relapsed then Intron A for one year. Long term symptoms of weakness, muscle atrophy, fatigue, hypoxia, and down the road finally of heart block and pacemaker (how long was that going on?). Not sure if psychiatric is a treatment symptom (probably), or loss of health, income, personal independence and identity. How about Hep C symptoms (severe) were caused by something other than that virus?
morning, i just got off of the phone with Merck...who bought out Schering-Plough whom MADE THE INTERFERON N RIBAVIRON. I reported the drug to them n when n where. also told them i am seeking a lawyer...they asked me questions for 30 min. Anyone interested in going this route pls PM me. i also turned this in to FDA
absolutely no doubt about it...too much coincidence in signs/symptoms. im eight yrs post treatment n i feel worse everyday. just not right. we all have our war stories n this should not be condoned in any way.
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.
@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! 🙄
@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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That's a good idea. Shout from each county in each country!!
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1 ReactionA lot of us believe it was caused by the interferon and Rabivirin 🤔
i have many recommendations for those of u whom want to pursue this, pls pm me if interested xo
I'm interested
absolutely no doubt about it...too much coincidence in signs/symptoms. im eight yrs post treatment n i feel worse everyday. just not right. we all have our war stories n this should not be condoned in any way.
@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! 🙄
These findings are during treatment & the other one is only 3 months post- treatment.
Ye 10 years on and still experience side effects and am certainly not giving it big cheers and hcv free
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2 ReactionsThe majority of people on here are post treatment in terms of years and still suffering but hay hcv free hip hip horay 😢