wendywx

Hi. My name is Wendy. My husband was dx with AIHA in Feb 2005. After months of pred. and several transfusions (his hgb at dx was 4.1, hct was 11), Jim had Rituxan therepy. He initially went downhill fast and had 14 transfusions in a week and a half. But after the 5th Rituxan treatment, he started on the uphill trend. He had a remission of 18 months. He is out of remission now...and has had 8 Rituxan treatments, but his numbers keep going down at this point. His doctor has decided that the next step is Cellcept, an immunosuppresant. Then Cyclosporin, and lastly, if needed, Splenactomy. Unfortunately, he also may have GERD, and is going to be scoped sometime next week. The immunosuppresants are hard on the GI tract I hear. Has anyone on the board here had Cellcept or Cyclosporin before? If so, what were the results of that? He also has Cold Agglutinin disease, and I have read that with CAD, splenectomy is less than 40% effective. Anyone have any thoughts on that subject?
Thanks for listening and hopefully responding. Our situation is such that our hemotologist is 310 miles away (we live in remote Alaska) and Jim's numbers have fallen really fast in the past 5 days. He is sitting at hgb 10.2, hct 29.0 as of yesterday. That was down from hgb 11.4 and hct 34.1 only four days ago. We are starting to panic here. Normally, when Jim hits hgb 10, the doctor orders him to Anchorage to stay for monitoring and possible transfusions (if he falls to 8 or below). At this time, we haven't heard anything from her about treating this episode. Panic is really starting to set in! Help! Thanks
wendywx