Hi Marlene,
Thank you for info about the new warning about Exjade
!
When I started iron chelation after 40 units of packed RBCs my doctor told me that Desferal hardly ever had hematological adverse reactions and up to now I have got Desferal from a small home pump during 4 days with transfusions without any adverse effects. Desferal doesn't work so well so last fall I tried Exjade too.
I started with 250 mg/day with monitoring each week. I increased the dose once a week to 2000 mg but then my WBCs decreased and I stopped taking Exjade.
Then I tried 250 mg/day during 2 months and now 500 mg/day with blood work every week. My liver and kidneys manage very well and the WBCs are holding this far
. The ferritin value is slowly decreasing.
My platelets are quite low (no correlation with Exjade) and I hope to be able to get Promacta like Kirby but I can't participate in any of the trials for MDS patients because I have very severe bone marrow fibrosis so I am excluded from the two trials for MDS patients.
Kind regards
Birgitta-A