[KMac]

Hi Liz,

My understanding is that desferal infusions usually need to be very frequent and administered over the long term to produce a significant drop in serum ferritin levels.

From January - June 2012 I required about 24 units of PRBC while waiting for my ATG/cyclosporine treatment to work on my AA. By April my ferritin was at about 3000 (and my iron levels started out normal in Jaunuary before my 1st transfusion, so I sure packed it on quickly). An intensive 6 week regimen of desferal iron chelation cut my ferritin down to about half that, even though I required an additional 4 units of PRBC during that time. I feel immensely lucky that I stopped needing transfusions and my blood started rising on it's own. My transfusion independence didn't come a moment too soon, as the desferal was beating up my kidneys (high GFR), and so my doctors wanted to stop it. My ferritin is still a bit high (about 900) but my doctor feels my Hgb is not quite high enough for the phlebotomies (I run in the 12-14 range), and under 1000 they tend not to treat the iron overload with medication. My body seems to be slowly removing the iron from my system as it makes blood again.

As to the desferal regimen, I was hooked up to a pump administering the desferal for 40 hours a week. If I recall correctly, I received at least 500 mg five nights a week (it might even have been 1000 mg, I forget), an 8 hour infusion each night. My hospital said the slow infusion would work best. Fortunately, my insurance covered a home healthcare service to delivery the pump and desferal to my house, so I didn't have to get my infusions in the hospital (probably much cheaper for the insurance company that way too).