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Hi Birgitta-A,
John couldn't get past 1000mg/day of Exjade. Eventually he had to stop it all together because his kidneys were being effected by it. I am glad you found a dose that's working for you and that your doctor is taking the time to monitor your progress correctly. We played with dosing also but even 500 mg caused problems. John is still getting phlebotomies to reduce the iron. His last FE was around 600.
Take care,
Marlene
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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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