The CGD Café

First of all, thank you to Mary Hurley for providing me with some information. Sean is now in the hospital for the 2nd time since October 2007 with ulcerative colitis (I guess the docs are saying also Crohns??? Have to check on that!).  He has been there this time for 1 1/2 weeks and his response to steroid treatment has not been good.  The docs believe he is steroid dependent and I tend to agree with them since he does fine until the dose tapers below 20mg/day. A colonoscopy and endoscopy were done on Wednesday (today is Sunday) and the view was much worse in both the colon and his stomach. Sean has received 2 blood transfusions (which he has never had before and was quite scary) so far and is still being "fed" soley through his PICC (TPN).  He has been GREAT overall with not having anything to eat or drink in this amount of time (I think I would have hurt someone by now!) but of course, there are some difficult times.  Anyway, after his ID doctor talking with NIH, the groups of doctors decided that Remicade was too risky to give to Sean and put him on Azathioprine (which from what I read turns to 6MP in the body) and increased his prednisone until that kicks in (slow starting). Has anyone had any dealings with this medicine? It doesn't sound like there are many options when dealing with moderate to severe colitis with CGD patients. I don't like the sounds of any of the meds honestly, but have faith that the doctors have made the right decision. As you all know, anything new is scary whether it is dealing with or without CGD! So any input you have on colitis and/or crohns and CGD along with the meds/therapy would be most helpful! Thanks so much!  My new email: purpleloversue@yahoo.com