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Please read this important study on post-tx experiences***

Sandalwood posted this study in the thread below on long term side effects after tx.  I found this to be a real eye opener, in that it really validates the randon percentages of treaters that are reporting the exact same problems we have been discussing here on the forum.  Thanks for posting this study, because it is very personal, comprehensive, and jarring!  Look at the percentages of the 27 test subjects who report all sorts of issues.  Consider how this random group could be extrapolated out into the entire treating community.  I find the comments and conclusions in this piece to be the FIRST and ONLY that have honestly and thoroughly looked at this issue.  The actual experiences of people after finishing therapy.  For those that scoff at the idea of therapy after effects, or think its only a small, insignificant group....READ THIS STUDY.  

Thanks for finding this study Sandalwood.!!!  Its unique.  Here is the link.  Note especially pages 16-20...and conclusions...


I think we have only scratched the surface of the iceberg here on the forum.  Who knows what the real long term issues might really involve, and how many are really affected.  Like people say in the study...Where ARE the studies?  Who did warn any of us of these long term problems?  What are the doctors and drug companies doing to find out what is really the status?   Read and enjoy....or cry...whatever the case.

65 Responses
Avatar universal
So I guesswhat you are saying is that yes, there are hundreds of possible long term side effects possible from interferon use, and yuo have provided a laundry list of what might happen.  Now we just need to have some broad follow up studies to see how many and what percentage have ended up with some or many of the long list of possible sx that you listed.  Thanks you for the list.  I had thought you did not believe in long term interferon sx!  Silly me.

Avatar universal
And also please read my comments again, because you answer questions I did not speak to.  I was discussing LONG TERM sx follow up studies, not treatment sx.  The linked study also, DID most definitely say that only TWO people in the group did not have negative or adverse effects after ending tx.  Did you actually READ the linked study?   I am not saying these things, the people running the study and the participants are saying what I noted above.

Please, also SEND us a link to ANY study that addresses LONG TERM AFTER EFFECTS of Interferon, that I supposedly have not even read, and I will thank you for enlightening me.  WHICH studies are you actually referring to?  I only know of studies looking at sx experienced DURING tx.  We are speaking about AFTER EFFECTS.  

If you think all the doctors and drug companies are warning patients about the liklihood of LONG TERM or PERMANENT after effects, why then is nobody on the forum, nor in the linked study hearing any of these warnings????  Maybe you had the only up to date, fully informed doctor out there!  You were fortunate in that case.

148588 tn?1465778809
Thank you.
I don't know if causation of my diabetes and PN will ever be untangled since:

HCV also carries a threefold increase in risk of developing DM.

I always had what my GP called "boderline or pre-diabetes" based on my fasting glucose - which my neuro doesn't believe in. He says you're either insulin resistant or you aren't.

Geno 3 left me with NAFLD which hasn't resolved post-tx.

I also had low B12 post-tx. I take CerefolinNAC offlabel for my PN and B!2. (Both my GP and neuro' swear it's not for my dementia :-).

My weight was 220-225 pre-tx with post-tx rebound to 230+. Dropped to 195 once I started Metformin and has held steady there for years.

And that's without even getting into my cholesterol, blood pressure, insomnia, etc. etc.
And that's just one patient's post-tx symptoms. Can you imagine trying to catalog and analyze the problems of a representative sample of post-tx patients? I've sorta given up hope on studies and just accept what it is is what it is. I'm just glad that a bunch of pills help me live a normal, active life and hang out here to see what other people have found that might help.
Take care.
1765684 tn?1333819168
GPs also have limited knowledge of diabetes.  So I wouldn't rely on anything a GP said about diabetes.

If I want information about diabetes (I have type 1, autoimmune diabetes), I ask my ENDOCRINOLOGIST.  Not a GP.

Questions I might ask my GP include:  a) Hey, does this look infected? or b) Can I have a referral?

Uh, yeah, that's about it.
148588 tn?1465778809
Oh yeah, and my GP is apparently in denial about his own DM. He wanders around the office with his nurses yelling, "Next time all I'm going to do is call the ambulance for you!"
Please don't tell me to get a different doctor. Where I live it's a 2 hour drive to the nearest GP and 5 hours to the nearest specialist - and I'm short on gas $. If anyone is entitled to self-diagnosis over the internet, it's me.
148588 tn?1465778809
That should have read "... wanders around the office eating a candy bar..."
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