Iron chelation via desferrioxamine balloon pump.
Hi all, I am from England and diagnosed SAA Sept 2011, rabbit ATG failed and taking 250 mg ciclosporin and having prb transfusions every 4-6 weeks. Iron up to 2500 so I have started on a sub q balloon pump over 96 hours, (4 days on, 3 days off). This is my third lot and I am fine while I am on the pump, but when I take it out I am ill. I feel and have been v. sick, dizzy, feel like somebody is kicking me all over, my husband says my face is grey and I go to bed for 36 hours. Given this is half my time off the pump I am wondering if this will stop or whether I should look for an alternative. Speaking to the docs they say only given the pump to two other people who lasted one day and gave up!
Any advice would be most welcome. Docs dont want to give exjade as it kicks counts and pancytopenia won't take it. I am 58 and am starting to think bone marrow transplants look good. Husband worries cos he says you only talk to the survivors. Many thanks in advance.
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