6 month checkup

Haven't been on in a long time, but back to needing the support of my peers. I did treatment for 72 weeks, as I didn't respond in the beginning and was not undetectable at 12 weeks. My doc cut the Ribo down to 600 per day, as the 1000 was just killing me with side effects. 72 weeks, finished in June.
Just got my 6 month checkup, and I am no longer undetectable. Haven't seen my labs yet to see what my count is, have to go have more labs and see him next week.
I've read that a lot of people had trouble with treatment and it did not work. My question is:
Did you try again, or did you stop?
I know the new meds are much better, but that was a huge amount of time and I felt like *&%$ all of the time. I don't know if I want to go through it again. I don't know that pumping all that "poison" in my body isn't creating worse problems for me. I don't know what to do. Any advice?

[Advocate1955]

Hi Zrjl,
It sounds like you were on SOC (Interferon and Ribavirin), right?  I will let someone who knows all of the trial study results better than I do respond here, but I think many people who have Genotype 1 and who either were partial responders or relapsed with SOC are now retreating with the triple therapy and my understanding is that there chances of SVR have improved.  That is what the trial studies showed, and that is what people on this forum seem to be experiencing as well.  After you get your lab results, I would suggest that you make an appointment with your hepatologist to discuss whether to retreat with one of the triple therapies now.  Your doctor will be able to advise you based on the amount of liver damage that you currently have, your relapse after SOC, your age, etc.  Best wishes.
Advocate1955

[flcyclist]

Sorry to hear this news.  Take a look at this recent post for a similar situation.

http://www.medhelp.org/posts/Hepatitis-C/Didnt-make-it/show/1637745

[willbb]

Really sorry to hear about your news. That is a long time to treat and then to have a relapse is certainly a tough one.
You mentioned that you were not UND. at week12,however  were you UND. by week24 and if so did you remain Und. until sometime after stopping treatment.

The reason I ask is... you would then be considered a relapser and with the new medications available today.relapsers  had approx. 75 85% success rates  in trials and often doing just 24 weeks. with either of the two  new meds on the market today.

Do you know the current amount of liver damage you have ,as this could very well factor in when  it would be best to try again.
There are many drugs currently in trials ,that are having good early results,and some without the use of Interferon.however these may not be on the market for a few years...

Again...very sorry to hear this ,however you still have options...
Best..
Will

[fretboard]

Dang sorry to hear this!  Tx has changed for most people from SOC to add another drug, check out the link.  So what week were you UND?  It's a shame you didn't clear, when will you try again is the real question here.  If you were willing to go 72 weeks then I am certain you are gonna fight that bassturd HepC again.  good luck to you!!


http://articles.latimes.com/2011/may/23/news/la-heb-telaprevir-fda-hepatitis-05232011

[zrjl]

Thanks so much for the comments. It always helps to know that you are not alone.
I was undetectable at week 24, and stayed undetectable throughout the rest of the tx. My 3 month checkup was great, I was still undetectable. But now at 6 months...BAM!
I actually had  almost no liver damage. I contracted in 1974 from a blood transfusion, but was never a drinker, nor did I do drugs. I have always tried to keep myself pretty healthy and I guess I was lucky enough to ward off damage.
I had heard so much about the new treatments that were coming up when I started treatment. Now it's a relief to know that they are here and they are so much more effective. If it was the same treatment that I went through, I would never put myself, or my friends and coworkers through that again!!
Thanks again for the support.

[Bill1954]

Sorry to hear of your plight. It’s *very* unusual for one to relapse after 90 days post therapy; did your doctor have any thoughts on that?

Just so you understand, the new drugs are used as adjunctive; that is, they’re used in addition to the old interferon and ribavirin (in most cases). There are some clinical trials available right now that are all oral without interferon but they’re in early development and perhaps not ready for prime time. A gentleman in here failed an all oral regimen last week in here for instance.  

Plus, these new drugs tend to confer resistance in those that that fail to fully respond or relapse, so that needs to be considered as well.

Good luck with your decisions-

--Bill

[zrjl]

Thanks, Bill.
Yes, I had that information and understand that. I've done a ton of research both before and during my treatment! I wanted to know all I could.
Thanks.