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

Wendy--Welcome to the Anemia board. I don't have this problem and can't give you any information on it, but I did want to say hello. I am so sorry that you and your husband are going through this hard time and remote Alaska at that!

I don't know if you saw it or not but there is a thread at the bottom of this board about AIHA with 89 posts I believe. Maybe you can also add to that post and bump it up or at least read it. I'm sure someone will answer you soon. You can also use the search box at the top of the anemia board for those drugs that you listed and you can read those posts. Maybe this will help a little. Good luck to you both and let us know how things are going. FLFLOWERGIRL:)