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Exjade
Hi Johine,
Yes, some things you describe sound strange.
Do you know your ferritin value? You should not start iron chelating if the value is lower than 1000.
Hardly any MDS patients should take iron pills - we will often have problems with too much iron during our disease.
I have never read anything about a patient who started iron chelation after 3 txs - 25 is more common.
Among MDS patients that need iron chelation Exjade now is the most common drug. It is true that Exjade can give low HGB but some patients get higher HGB when they get iron chelating drugs perhaps because that kind of drugs decrease the free radicals in the bone marrow.
Perhaps you could ask for a second opinion from a doctor who is a MDS specialist?
Kind regards
Birgitta-A
72 yo, dx MDS Interm-1 2006, very severe bone marrow fibrosis, tx dependent from dx, received 142 units of PRBCs, Desferal after 40 units of blood Aug 2007 in connection with txs, Exjade Sept 2009 - July 2011. Positive result with Thalidomide and Prednisone.
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