thx for your encouragement. think we have found a good gi, but they arent taking new pts until march 04. trying to get in earlier. txparner
I'm sorry to hear things are hard right now. It's a discouraging time and and it's easy to get overwhelmed. Four-weeks post tx is a short time. Neither hemoglobin, nor neutrophils nor platelets will have reurned to pre-tx levels by then (platelets can take up to 6 months) indicating the body is still busy recovering from the effects of tx. Fatigue, nauseas, diarrhea, itching, irritability and all the other fun and games of tx can be expected to linger on at this stage though hopefully with diminishing force. As for his VL increase, fluctuations up to a three-fold increase/decrease are considered part of the chronic infection steady state : a change from 3M to 5M is less than a 2 fold increase and nothing to worry about. What were the results of the hemochromatosis test? From my limited reading on this it sounds like a phlebotomy can be a useful way of controlling hemotochromatosis - did your ex-GI talk to you about this? Finding a GI you can work with is probably the most critical step. Non-response to tx is a bummer but expected about 20-30% of the time. If your husband's scarring is moderate you have some time. Finding a GI that will work with you on diagnosing and treating factors beyond the background chronic-HCV progression is important. Remember SVR for 1s is still pretty much a long-shot - about half won't get there. If you're in that group, there's no reason to give up, just focus on other ways of monitoring and containing the progressionof the disease. Best wishes to you both.
Talk about spikes! Hubby is spiking everything. after 24 weeks, hubby stopped treatment with PegIntron and Rebetol, his viral load went from 3M down to 500K at 12 weeks, and up to over 5M at 24 weeks. AST an ALT never normalized,but were below 100 each. NOW, 4 weeks post tx, his AST and ALT are both over 300. AND his ferritin level went from an abnormal 300 to 1100. He was tested for primary hemochromatosis. Now he doesn't know where to turn. the AST/ALT elevation indicates inflamation. High iron can cause as much damage as Hep C. And his Hep C is out of control. We are scared, don't know what to do, fired our GI for not calling back. Dropped us like a bad date once the treatment was finished. Our primary care doc doesn't know what to recommend. Hubby is more fatigued than on treatment, has diarreah every day several times, is losing wt rapidly, is pale, though tired is not sleeping well, is irritable even though off rebetol, and itches all over. Any ideas what all this could mean? He is 1A with moderate scaring.
Hi Rudy - your Dr. should have told you at 12 weeks your chances of SVR were minimal because your VL did not drop 100-fold during that time(see a recent <a href="http://hepatology2.aasldjournals.org/scripts/om.dll/serve?action=searchDB&searchDBfor=art&artType=fullfree&id=ajhep030384789#head1">editorial</a> in Hepatology. The other VL tests are consistent with a partial response to the drugs. If your Dr. is pursuing therapy as a way of controlling progression of your fibrosis past stage 3 they should talk to you about this - and if so why they think it's important for you to stay at full dose. There isn't much data yet on treating Peg-Intron non-responders with Pegasys but Roche is starting a new trial to investigate this (<a href="http://www.hivandhepatitis.com/hep_c/news/070703a.html">REPEAT</a>). Personally, I'm skeptical they'll get demonstrate enough response to make full-dose tx worthwhile, and in any event you might want to wait till the results are out before committing. Best wishes.
I have no data to suggest switching at this point/retreating with Pegasys is of any benefit.
The neupogen has been shown to be safe and effective for longer term, higher dose use in the cancer setting, but remember, your doctor is using the Neupogen "off label" and there is no guidelines in place for dosage or duration (although most of us feel very good using it).
GI.PA