Questionnaire

[TeeVee36]

I would like to know how many people have really been cured?  Specifically who is UND for 3 yrs or more?

Who has been UND for 6 mos to a year and then relapsed?

[Deb_c430]

That I will agree with, but as double stated,  there are I think more of us than you would think.  I only began coming to this   forum to find answers.  AS relapsers.

I would even suggest there are many who do not even know they have relapsed.  

I think I stated quite clearly I hoped this was not true for anyone else NOR  do I hope it is.

[jmjm530]

Please, I didn't say your tests were wrong, I just offered up some possiblities based on actual experiences here. As stated, being UND at six months is not 100% guarantee of SVR and no one has said that.

I realize that's no consulation to  the 1% or less like yourself  that do relapse after six months, but it is a consulation to those entering treatment to know that SVR is durable to around 99% or better, depending on the study.

-- Jim

[Deb_c430]

sorry but all my PCRs were done twice, so no there was no " mistake" in  the tests. Why they were done  twice was because of steroid concerns even then.  
Also other concerns,  so yes in my case you are not correct.

[Deb_c430]

I totally agree with all your points.  so far SVR is theory and that is all, if your antibodies do not  disappear, it seems that  like chicken pox,  they can mutate, they can become something different, like chicken pox  lies dormat and in older people becomes shingles.

I think people like to put things in nice little boxes, but this is a virus,  with virsus be it flu, chicken pox, they mutate. They lay dormat,  they become something else sometimes,   If we are lucky they stay dormat.  There are no absolutes.

It is still all theory, NOT fact yet. % do give us a clue.   For most I pray they hold accurately!  That those who are SVR stay that way!

I do not see SVR as cured, I see it as remission and hopefull with long term effects!

The fact is I would have been a perfect canidate to find out why, I have never been a drug user, nor a drinker,  I am healthy always been so. My test have been done and re done 1000 times ( Iexagerate) But no one was more surpirsed  than GIs. Except me!

The only thing anyone could point to was for part of treatment I was on steroids, but so low a dose and was weaned  in the first 4 months, I txed for 48 weeks.

So thank you Double,  that made sense to me, and I agree with it 100% ,  

Deb

[desrt]

Undetected since January 2003. Ended treatment April 2003. Last tested undetected April 2007. Fired as a patient by my gastro January 2008.

[jmjm530]

I'm very sorry about your relapse, but if you read my previous posts you will see that I did not "generalize". What I said was that studies showed that around 99% of those who were UND six months post treatment remained UND and this seems to be born out by the collective experiences here. It appears you are one of the unfortunate 1%.

There is also the possiblity, although statiscally very low, that one of your two tests was wrong -- either a false positive and/or false negative, with the former more likely.

Hopefully, you re-tested after your 9 month follow-up to make sure it wasn't a false positive. We have had cases here of false positives following EOT that on re-testing turned out to be UND.

-- Jim