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Old Fri Sep 26, 2008, 05:38 PM
Hawaii Bill Hawaii Bill is offline
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Join Date: Jun 2008
Location: Waikele Hawaii
Posts: 100
Iron Overload strategy

My doctor is starting me on Desferal soon, as my numbers are high. I would greatly appreciate anyone's thoughts on the situation:

I received my AA treatment in Dec 2006. I did not keep records of all the PRBC transfusions, but I put it down on paper and I think that I got around 31 units, most of them in the hospital, from Aug 2006 thru Mar 2007, when I became transfusion independent for a few months. Since I restarted transfusions in Sep 2007, I have had 11 units, basically 1 a month.

At my NIH eval in Aug2008:
ferritin: 1892 mcg/L
transferrin: 194 mcg/dl
iron: 251 mcg/dl (my doc was unsure about this one in the NIH letter)
alanine aminotransferase: 56 U/L

I am about to undergo a second AA treatment, possibly the Campath one at NIH, and I wonder if I should bypass the Desferal for now in hopes of a recovery and then using phlebotomy instead. What's the potential harm of a few more months at this stage?
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Male, 56, dx Nov2006 VSAA (BMA:0%). Responded to ATG/CsA/Prednisone/Neupogen Dec 2006, but relapsed in June 2007. Counts are responding to using CsA 200mg bid alone since Jun 2008. Last PRBC tx: Jul 2008.
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