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From what we were told when John was first diagnosed is that it is very important to nail the diagnosis since treatments are, for the most part, very different. I think only one form of MDS is treated with ATG.
One other thing regarding iron overload. Each full dose of Exjade chelates approximately 40 mg of iron but it does vary from person to person. (at least that's what I remember) So it takes several days of using it to remove the high amount of iron you get with each transfusion. Each bag has about 200-250 mg of iron so it takes 10 -14 days to get rid of the iron in each bag. This is also true for desferral. The frequency of transfusions pretty much dictates whether or not the Exjade will reduce the iron burden or just keep it status quo.
I hope you were able to get your red cell and feel better.
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of July 2021 HGB 12.0, WBC 4.70/ANC 3.85, Plts 110K.
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