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Avatar universal

non responder #2

I just got back my 12 week viral load tests and my viral load has not dropped enough to continue treatment.  It was 1,100,000 at start, 180,000 at 4 weeks, and 240,000 at 12 weeks.

I do have mixed feelings about it since I was having a very tough time on the Tx, and part of me is happy to be able to stop.  But that is mixed with the fact that I did not clear the virus, which I am not very happy about.

That is 2 times for me.  Treated in 2000 with non-peg interferon + riba.  This time was peg-interferon + riba.

I am not sure what my next step is.  My last biopsy from a few months back showed stage 4 fibrosis, so I need to do something.  I guess my only choice is to wait for Telaprevir to become available and try treatment again.

I have no symptoms or any problems, other than abnormal bloodwork, and felt perfectly great before the Tx.  

I really don't have any idea of what will happen to me next.  If I just go along without any treatment, but live and eat healthy, how long will it take for my liver to start failing ?   I know that is not a question anyone can answer.  I have spoken with my Dr. and others, and read everything I can find, but in the end all anyone can say is that there is no way to say how long it will take.  It could be next week, it could be 20 years from now.  Since I went from stage 1 to stage 4 in 10 years, I am guessing that 10 more years is probably not likely.

I guess that is just life.  Nobody really knows how long they have.  I plan to not get overwhelmed by thought of this, and just continue living my life and enjoy it.  Hopefully my liver will hold together until the next treatment is available, and maybe the next time I will have better luck.

Best of luck to everyone else out there.  Keep on fighting, but try and enjoy life while you are at it :)


















9 Responses
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Avatar universal
Thanks for all the responses and info.
Helpful - 0
Avatar universal
sorry - that's 19, not 9( going blind), around SNP rs8099917
Helpful - 0
Avatar universal
That's a 0.78 log drop by w4. I'm pretty sure GreatBird had less than that before starting on the Boceprevir and she should be posting her SVR any second now.

It's not a great IFN response but it is *some* response and no one knows yet how much additional ifn activity is required to supplement the  1st gen PIs.

Some things that might help boost the ifn if you try again with a PI :

- check for IR; if HOMA gt 2 it's likely to be an issue. If BMI gt 24 that's a clear factor
- consider adding alinia/ntz and SAMe before re-starting ifn to enhance response
- if you have access to a research/university setting, see if it's possible to have a stretch of your chromosome 9 sequenced around gene IL28B. Variation in this areas has recently been found to be a strong predictor of ifn response (eg

http://www.ncbi.nlm.nih.gov/pubmed/20133003

Knowing what you're up against may help plan the next battle.

All the best.
Helpful - 0
806995 tn?1265823176
Join the club, I know exactly how you feel as well. I stopped treatment after 8 weeks, since it was clearly not working. My liver is in cirrhosis, too. It is doubtful if it will last until 2012. Which means a liver transplant, or get into a trial. I regularly check http://clinicaltrials.gov/ for new trials. It's the least I can do...
Helpful - 0
223152 tn?1346978371
I don't have answers but I think sometimes the drug companies will release the drugs before they have FDA approval.  Some kind of compassionate effort.  I don't know how you do it - a member - magnum - tried to do it, I think unsuccessfully, but if your put his name in the search at the top you can find his posts and get to him through a pm. I know he can at least tell you the route to take.  I think you have to get your doctor on board.  Do you have a hepatologist?  

At stage 4 you need to do something.  There are just some strains of this virus that absolutley do not respond to current SOC and I don't know if you can wait until late 2011 when Telaprevir (Vertex is the company) or Boceprevir (Merck is the company) will be available to all of us relapsers and nonresponders.

I wish you luck
frijole
Helpful - 0
897070 tn?1320652629
Yes I can fully appreciate how you feel as the same thing happened to me.I'm now cirrhotis and waiting patiently (sometimes) for the next leg of the journey.You are right not focusing on what may happen, just live as positively and as healthy as you can manage. Personally I think there will soon be a solution to our problem as there is so much moving into the pipeline now. I am waiting for a suitable trial to come along and when that happens will give it my all. Hope you get your solution sooner rather than later.

Take heart you are not alone !
Helpful - 0
Avatar universal
I'm sorry to hear about your bad luck.  My situation is similar to yours.  I was a slow responder 2 years ago during my first treatment of peginterferon + ribavirin.  I went PCR und at 20 weeks and they finally stopped treatment at week 30 because they realized it wasn't going to work because I wasn't TMA undetectable.  8 weeks ago, I started my second treatment of peginterferon + riba and a study drug, TMC435.  There is a 1 in 7 chance that I don't have the TMC435, but a placebo and the other 2 drugs.  So far the side effects are less than they were last time.

It sounds like you have a positive attitude and you're  maintaining a liver-friendly lifestyle.  One option would be to try to enroll in a study or of course wait for teleprevir which is due in 2011.  
Helpful - 0
Avatar universal
I know exactly how you feel - I didn't respond to pegasys either, and week 12 labs were pretty disappointing. My doc suggested switching to daily infergen shots, although he also mentioned that my chances of responding to this drug would be very low, no more than 10%. I decided to take a chance and I am glad I did. I was detectable but below 43 by week 4 on infergen, and week 8 PCR was undetectable. I am now on week 20 of daily infergen. So far so good. I think I can handle this treatment, although having some issues with anemia now. I know infergen is not a miracle drug, chances are low, and most people would choose to wait for new PIs, Just sharing my situation though. If you feel like discussing infergen tx with your doctor...
Helpful - 0
Avatar universal
Bummer.
I'm so sorry treatment didn't work, but I can relate to what you're saying about a little piece of you being happy because now you can stop this nasty treatment.  I have those thoughts on a daily basis.
Maybe the teleprevir or boceprevir will be your miracle drug.  Don't give up.
Helpful - 0
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