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Old Mon Apr 7, 2014, 03:19 PM
Marlene Marlene is offline
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Join Date: Oct 2006
Location: Springfield, VA
Posts: 1,406
It took long time to get an oral iron chelator that works but that came with some additional risk. It is more convenient and compliance is up with it.

The Exjade was harder on John than the Desferal. He eventually had to stop Exjade because it messed with his kidney. His platelets were at 23K when started it. There was no contraindication about platelets when was using it and it never messed with any of his counts. But that was the early days of Exjade before they had more data on it. And, he was no longer any other drugs.

I do think Desferal worked better but once he lost his hickman due to an infection, he chose not to get another. He did the sub-Q. That was not pleasant. The key is, as you stated, to infuse slowly over 8 - 12 hours for at least 3 consecutive days. John's schedule was M-F and off for the weekends. We knew someone who infused 7/24, a very aggressive approach. I don't recall any warnings about low blood counts or liver problems with Desferal. Desferal's exit path is the kidneys. Orange urine is a good thing.

Vitamin C.....From what I remember, it's not recommended to add in vitamin C until after being on deferral for one month. Vitamin C makes the iron more available for chelation and the dose is only 250 mg.
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of July 2021 HGB 12.0, WBC 4.70/ANC 3.85, Plts 110K.
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