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Old Fri May 18, 2012, 12:50 PM
riccd2001 riccd2001 is offline
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Join Date: Aug 2010
Location: Burlington,Ontario,Canada
Posts: 186
Where I live docs recommend that when serum ferritin exceeds 1000 and you've had between 20 and 40 units of PRBCs, then it's time to start one of the medically accepted chelation treatments. There are a growing number of 'alternative' suggestions in this forum, but I'd be very careful in trying ANY of those suggestions.

However you decide to proceed with chelation, make sure you have a known baseline for Creatinine. Many of these meds alone or combined can cause increasing dangerous Creatinine levels which can lead to serious non-reversible kidney damage.

My experience with Desferal sub-cu was not good. I had severe site reaction and discontinued after 5 days. YMMV but I use Exjade (3x500) daily and am able to handle the side effects fairly well. Starting in 2008 and to date I've had 190 PRBCs transfused and there are other members on this site who have had many more!
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Ric: Low-risk MDS (blasts <4%); 4 cycles Revlimid no positive response; PRBC transfusion dependent; so far, 392'units' over 8 3/4 years; BMB #4 (15/04/01) shows evolution to AML (blasts 20-30%) 47,XY,del(5) (q22q35),+21[24][cp24]/46,XY(1).
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