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Thalidomide
Hi Kirby,
Thank you for the kind words!
Hopefully Thalidomide is a good decision.
Very interesting that you are treated with Promacta - I thought that they have strict rules for Promacta (and Nplate) so that only patients with Immune Thrombocytopenic Purpura could get these drugs. It must be much better to take Promacta than having platelet transfusions.
You know I told my doctor initially (May 2006) that I only wanted supportive therapy as long as possible since I am so afraid of adverse reactions. I am asymptomatic with transfusions, iron chelating therapy (Desferal) and Neupogen for my low white blood cells.
I tried the iron chelating drug Ferriprox (not approved in the US) but it decreased my white blood cells (a well known adverse reaction) so I had to stop taking that drug. Perhaps I am going to start with Exjade since Desferal isn't working so well after 2 years - I have received 94 units of blood.
Kind regards
Birgitta-A
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