Hi Everyone
I am brand new to this group. I am very hopeful and interested in getting answers from all of your experience. I am 58 years old and my twin brother has been recently diagnosed with warm AIHA. We have been told it is idiopathic. It has been about 6 to 8 weeks since his original diagnosis (Coombs test positive) of AIHA. He was initially put on 80 mg of prednisone daily and has been having his blood monitored weekly (we have a local hematologist). I am really only familiar with his hemoglobin which got down to about 9.2. His first week of Prednisone his blood went to close to 10.0. His Prednisone was lowered to 70 mg daily for a week, then 60 mg daily for a week and then he got down to 50 mg daily. His hemoglobin has dropped back to 9.2 so the doctor raised his level of prednisone to 60 and just last week had it changed from 60 mg daily to 80 mg daily again because the last lab showed his hemoglobin dropped to 9.2 again. Also about 2 or 3 weeks ago the hematologist added Azathioprine (100 mg daily I think). We are getting to the point where we feel like our current hematologist is really not very well versed on this exact ailment and treatments. Here are my questions for the group…
1)My brother is obviously not responding satisfactorily to prednisone, it seems that the next recommended course of action is a splenectomy. It that the NEXT logical step? Does anyone know the percent of success or good response from a splenectomy?
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Everything I read seems to indicate Rituximab is very effective and safe in treating this condition. Sounds like that might be the next logical step to me, any input on this?
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We live in southern Oregon and would travel to see the right specialist in our state or perhaps California or Washington. Anyone have a suggestion as to a particular specialist to see for this.
That is it for now. I am looking forward to any and all input.
John Thomas