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

[DoubleDose]

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...


http://www.sprc.unsw.edu.au/media/File/Recovery_from_hepatitis_C_treatments.pdf

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.

DoubleDose

[willbb]

If you are stupid enough to trust the system to take the best care of you then you're probably better off dead anyway.
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Have disagreed with the OP vehemently ,however I agree with desrt,there really is no place on a support forum for that kind of attitude.
Will

[desrt]

The problem is that the patient that deals with their fear by becoming better educated is the exception rather than the rule. Frightened people *want* someone to tell them what to do or at least throw odds and %s at them.
And I take exception to any sentence that contains the phrase "better off dead".

[Troll265]

Can I just ask... what purpose would it serve to do all these post Tx Sx studies...?

They won't happen cos they're not justifiable..

At the end of the day you make yourself aware of the potential risks... NOT expect or trust someone else to do that for you... and weigh that up against the benefit of possibly clearing the virus... and then make your choice... it's really simple..

If you are stupid enough to trust the system to take the best care of you then you're probably better off dead anyway.

Yes... it would seem possible that a percentage of people do in fact suffer long term consequences of consuming synthetic Interferon Alpha.

Roll of the dice champ.... you either take your chance or you don't.

[rambleon40]

correction - "loss of  all my physical life activities" is false.  

"Great impairment of and loss of some" is more accurate.

[rambleon40]

rambleon40:
"Your odds of getting life altering side effects from interferon are worse.   "
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eureka254

"Data does not seem to bear that out.  We know from the natural history of hep c that 20% progress to cirrhosis and 5-10% of cirrhotics per year progress to HCC. I have yet to see any data, surveys, or other supporting information that would indicate 'long-term' side effects to be as high as 20% or more of the post-treatment population."
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Technically, eureka you may be right and I may be wrong.   However, is there data to show that long term side effects are less?

Compare "1% to 5% of people with Hep C will die of it" to be found at:

http://www.cdc.gov/hepatitis/HCV/HCVfaq.htm#section1

(and don't forget to factor in lifestyle, which I believe may be relevant)



with the percentage of side effects to be found at:

http://www.drugs.com/sfx/interferon-alfa-2b-side-effects.html

(and don't forget that some will be long lasting and permanent as is evidenced by folks on these forums)

I have cirrhosis, now, after doing interefron (had autoimmune hepatitis as side effect) .  I don't feel it, I think.  I do feel my psoriasis, psoriatic arthritis, humiliation form grotesque fingernails, losso fenjoyment of all my physical life activities, depression, brain fog and crushing lability (up and down of my moods) - I don't live depressed, but I am sometiems so bad that i just sit and think of ways to kill myself, or waves of sadness just crash over me and I start crying in public.  

I do wonder if my immune system now eating away at my skin and joints and tendons is doing the same to my liver.  

I was fine before doing interferon - I never thought about killing myself for God's sakes - and only did the treatment after being pushed and pushed by family member "better living through chemistry" doctor.    

[bbj2856]

This medecine is very scarry. I decided the way I could get through it is trust in God . I pray for strength  and his will to make me strong. He is doing that. This is my way I deal with it. I got mine through blood transfusing at  a hospital in late 1970's .  God Bless you all. Make God help us and make us stronger and better. Thanks to all of you for your inf and support.