[Lbrown]

Hi there,

I was diagnosed by a hematologist last Jan with PRCA. She did a bone marrow biopsy but they were unable to get any aspirate, so they just went by the "core sample" (not sure what that is called). Her whole explanation is based on suppressor T cells in the marrow suppressing my production of red and white cells, but the BMB could not get a immunophenotype(?) on them.

I tried cyclosporin for 7 months. I mostly took 450mg a day and felt sick every time I took it and had lots of side effects. I don't want to take prednisone. She has mentioned chemo as the next treatment (cytoxan I think?), or ATG, but neither of those treatments looks very appealing.

My HGB is dropping 10 points a week and I have a low WBC. The other week it was 0.9 with ANC of 0.4, but last week my WBC went to 1.3 with ANC of 0.5. I am going for transfusions of red cells about every 2 weeks. I also had agranulocytosis 18 yrs ago and was hospitalized for 2 months with a fever of unknown origin which eventually went away with cyclosporin (I had 2 courses of G-CSF which did nothing).

I am on a new experimental treatment for autoimmune diseases and am being followed by 3 other doctors. She doesn't know about this treatment yet because I haven't seen her in awhile. So far my blood work has been pretty abysmal, but I feel pretty good.

I have a question - my retic count is right in the middle of normal, so I am producing them, and their hemoglobin is high (I guess that indicates I don't have iron deficiency). Its very confusing.

Thanks.