Guest guest Posted May 20, 2004 Report Share Posted May 20, 2004 Hi , I am being tapered off the Imuran. My enzyme levels have been normal (except alk phos) for over a year, and my Hep (part of the transplant team at Lahey Clinic in Mass. and an Associate Professor of Hepatology at Tufts University in Boston) feels the Imuran is starting to cause problems with my pancreas. I've been on a lowered dose of 50 mg for a couple of months now and the only change has been the alk phos slightly elevated (still close to normal though at 159). Last week he had me stop it altogether, and will see what the labs are after one month of not taking it. Both my hep and GI feel that getting patients off Prednisone and Imuran is the best thing, if possible. They'll just keep watching my levels every month. I also have PBC, and that's why I have LFT's done monthly. Sandy C. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 20, 2004 Report Share Posted May 20, 2004 My 10 year old son came off prednisone 6 weeks ago and is only on 6mp right now (was allergic to Imuran). They are scheduling a biopsy of his liver in October or early November and if all goes well, he will come off the 6mp as well. I was told in the begining that one of the long term effects of the Imuran and 6mp were pancreatitis. Do you have regular tests done for this? we have them done every 5 to 6 months and are shipped to a special lab out in california (we live in New Hampshire) It is a tough decistion to make to come completely off or stay on... the long term side effects of staying on are, in my opinion, worse than coming off and finding that you have flare ups or may need a transplante. but that is just MY opinion. My son is only 10 and he would have a LONG time to live with the long term side effects if we chose to keep him on it and not give it a chance to see what would happen off of it. 6 weeks off prednisone and his numbers are still great!!! Good luck in your decision!! Jayne in New Hampshire > Hi , > > I am being tapered off the Imuran. My enzyme levels have been > normal (except alk phos) for over a year, and my Hep (part of the > transplant team at Lahey Clinic in Mass. and an Associate Professor > of Hepatology at Tufts University in Boston) feels the Imuran is > starting to cause problems with my pancreas. > > I've been on a lowered dose of 50 mg for a couple of months now and > the only change has been the alk phos slightly elevated (still close > to normal though at 159). Last week he had me stop it altogether, > and will see what the labs are after one month of not taking it. > > Both my hep and GI feel that getting patients off Prednisone and > Imuran is the best thing, if possible. They'll just keep watching > my levels every month. I also have PBC, and that's why I have LFT's > done monthly. > > Sandy C. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 20, 2004 Report Share Posted May 20, 2004 Awesome Jayne about ur sons levels!! I will be hoping his levels are good next time around too. Hugs Trish My son is only 10 and he > would have a LONG time to live with the long term side effects if we > chose to keep him on it and not give it a chance to see what would > happen off of it. 6 weeks off prednisone and his numbers are still > great!!! > > > Good luck in your decision!! > > Jayne in New Hampshire Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2004 Report Share Posted May 21, 2004 Hi Jayne, I live in NH too - Merrimack. I have my pancrease enzymes checked every 3 months. They are only slightly elevated, fortunately. It is ultimately my decision to quit the Imuran. I'm taking so many pills a day that sometimes I have a hard time keeping track - and I'm very organized usually. The only change I've felt so far is I'm not nauseous all the time anymore. It got to where I could hardly eat, so as long as my enzymes stay normal, I'm all too glad to be off all meds for the AIH. Sandy C. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2004 Report Share Posted May 21, 2004 Sandy I'm from VT.....**waves to the neighbor** I'm doing the Walk-a-thon for the American Liver Foundation - New England Chapter in Boston....is anyone else here doing it?? Here is a link to the page. http://liverfoundation-ne.org/events/wfr/index.html Here is a link to my fundraising page. http://www.active.com/donations/fundraise_public.cfm?key=cbenoir I would love to meet anyone from here at the walk. Cora Quote Link to comment Share on other sites More sharing options...
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