I just found the marrow forums from the AA & MDS Foundation newsletter. I have been reading many of the postings and find them very interesting.
My husband was diagnosed with MDS, refractory cytopenia with dysplasia without increased myeloblasts, in April, 2006. He was started on aranesp which he got every two weeks until March, 2007 when Medicare said they would no longer pay for it. Doctor switched him to epogen/procrit, 40,000 units every two weeks. His hgb continued to drop so doctored upped dosage to 60,000. That was holding it reasonably well. Then Medicare said the hgb had to be below 10 to get a shot. So, without the shot for several weeks, his hgb dropped below 10 so he is back getting either epogen or procrit every two weeks. The reason I give both drugs is that the clinic gives which ever one it has on hand.
He had a blood transfusion in August of 2006 and again in July, 2007. That transfusion was a result of a hospitalization due to a severe reaction to Exjade. We were out of state so had to deal with doctors unfamiliar with Don's illness. They didn't believe it was a drug reaction.
He was 74 when he was diagnosed. Doctor thinks it is from the chemotherapy he received in 1993 for non-Hodgkins lymphomona. He walks a couple of miles every day. I don't have any questions at this time.