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Old Sat Jan 1, 2011, 08:32 PM
riccd2001 riccd2001 is offline
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Join Date: Aug 2010
Location: Burlington,Ontario,Canada
Posts: 186
I'm not sure this helps answering any of your specific Exjade questions, but I'll give you an idea of my iron-level situation and what has happened to me.

About two years ago, I had reached 40 transfused PRBC units(about 250ml per bag) and started 1.2 ml/hour sub-cu Desferal to get back from a seurm ferritin level over 2000ug/L down to under 1000 ordered by my hematologist. I lasted about one week before having a severe site reaction and needing to discontinue that treatment. I've been on Exjade since than, but in early September 2010 developed kidney stone problems. Because of the likely side-effect of Exjade on kidney function my hematologist stopped that dosage of treament until Creatinine levels returned to normal. In early December I restarted Exjade at 3/4 dosage, but will probably increase back to full dosage as serum ferritin slowly starts to climb again. There are nasty side-effects using Exjade. They vary from one patient to another but can be reduced with a temporary reduction in dosage IMO. There used to be an easy-to-find on-line Exjade calculator, but Novartis has disabled that handy link.

Last week I had my 138th transfused unit and my serum ferritin level has climbed to 1340ug /L. Besides the date of donation, there is also the variation of actual volume amount which for me has ranged from 238ml to 343ml (a difference of 44 per cent is considerable). For example, if the donation is close to the expiration date, the hemogoblin benefit is overshadowed by excess-iron injection. For me fresh units are preferred but a compatible match is essential regardless of age of donation.
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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).

Last edited by riccd2001 : Sat Jan 1, 2011 at 08:43 PM. Reason: typo
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