Marlene thanks for your reply. I had my ferritin levels retested today and will see what the second reading is. I don't know if there is a baseline count from before my transfusions, will have to check. Also my doctors office is just sending in the information to Novartis for the Exjade prescription and I will have to wait and see if my insurance will pay for it.
I will discuss the dosage with my doctor. He originally said I should take 1500 (3) 500 mg tabs per day. But this is the first time he has prescribed this drug and he probably got the information directly from the Exjade literature which recommends that dosage for someone my size. I will not take the dosage until we have a chance to discuss.
I am currently getting a platelet transfusion every 5 or 6 days when the count falls below 10. Red blood cells I have been getting every 10 to 12 days, but I want to extend the length between transfusions. However, I get to0 tired to function normally when the hgb goes below 8.5. My doctor has been ordering transfusions when I'm at a higher level, so we can probably cut back somewhat on the transfusions.
Maggie (56 year old woman) diagnosed with severe AA in January 2006. Treated May 2006 with High Dose Cytoxin, Nov.2008 had BMT, both at John Hopkins. WBC & Platelets now normal, RBC near normal, still high ferritin level.