Originally Posted by Unzzz2003
Hello All; I haven't been here for a while, just got some bloodtest results and wanted to jump in here. I did trtment and stopped responding after 10 months so stopped trtment about 15 months ago. My recent bloodwork now shows my ALT&AST higher than ever before. I used to run in the 80's or so for both, now my ALT is 158 and AST 105 and Viral load which I don't worry about much is back up 16 Million. Just wondering if anyone has gone thru the same thing. I am wondering just how great things truly are after trtment for non-responders, and if things get worse. Thanbey, I think We had started to talk about this when I disappeared for a while. Any input? 2 and a half years ago on biopsy I was Stage 3 Fibrosis as well as Stage 3 inflamation
with moderate piecemeal necrosis and mod. portal infiltrates. Hope All Are doing WELL. Thanks.....Peace.......john!
Welcome back, John.
Your experience is consistent with a trend noted in the FDA approval hearing at the FDA. A non-responder
to the interferon treatment may see an increase in fibrosis progression within one to two years post treatment. This may or may not be the case for you. Enzymes are notoriously unreliable predictors.
This is the reason I recommend caution to those without evidence of advancing disease. You have evidence of advancing disease in your biopsy result, and therefore the treatment was worth trying, in my opinion. No genotype responds 100% of the time, so caution is in order for anyone with little or no evidence of progression. Progression is not a "given." And, weird as it sounds, you may have some improvement of the fibrosis. It is information you need to have in order to move forward and make decisions.
At this point, another biopsy may be in order ( possibly with a larger sample of the tissue this time. Size matters!) to answer the fibrosis question and a discussion with your specialist about low-dose interferon-only therapy, intermittant or on-going, or ribavirin-only therapy (which is now being investigated) if
there is evidence of further fibrosis or borderline cirrhosis. (Remember there is some subjectivity in the pathology reports , so have the pathologist look at the two biopsy samples on slides and physically COMPARE them to each other
, each and every time a biopsy is done. Simply comparing pathology reports or using a rating chart is not going to be through enough.)
There are also clinical trials of longer term, higher dose interferon. This may be an option if you tolerated the interferon well and has no adverse events or risks of same. Consensus interferon is also being discuss more frequently these days. It always had better results in genotype 1's on retreatment and was the only interferon approved for re-treatment. They are working on pegylating it, but it is still available unpegylated (just not aggressively marketed) for those genotype 1's looking at retreatment. Ribavirin is about to be available generically also, I hope.
Everything is an experiment with a non-responder. You have entered the twilight zone of medical knowledge in hepatitis C. But, don't give up or give in. Make sure your lifestyle is pristine and talk over your options with your doctor. Look into clinical trials and weight those opportunities out very carefully. Human experiments are there to answer a question. That means we don't have the answers, yet.
And, last, but not least.............hepatitis C, even at the stage 3 or 4 biopsy, is still a long way from liver failure or a transplant. If you are not eligible for a clinical trial, cannot manage maintenance interferon treatment, there is still NO reason to expect to be incapacitated by hepatitis C. Taking excellent care of yourself and having a postive outlook is still really good medicine. No drug or treatment can compensate for being cavalier about self care.
I hope this helps,
hepatitis c outreach project www.hcop.org
...all information is intended for general information and is not an attempt to speak to the specifics of any one person's medical situation or decision...........
preapproved by moderator1