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PNH Paroxysmal nocturnal hemoglobinuria

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Old Mon Jul 16, 2018, 10:01 PM
JenW JenW is offline
Join Date: Jun 2016
Location: Mabelvale, arkansas
Posts: 9
Iron overload

Hello friends, I have a new development, my iron is thru the roof. Had MRI and there is iron deposits in liver and left kidney. The Dr's have prescribed a drug named Jadenu. Just reading about the drug makes me afraid to take it. Has any of u with pnh had a problem with too much iron?
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Old Tue Jul 17, 2018, 06:13 PM
Marlene Marlene is offline
Join Date: Oct 2006
Location: Springfield, VA
Posts: 1,360
Even though our experience is with SAA, John did deferral, Exjade and therapeutic phlebotomies to get rid of the iron. Jadenu was not around back when he was needing to reduce the iron. His too was though the roof. Are you still getting transfusions? If not and your HGB is above 10, consider therapeutic phlebotomies. They are faster than chelators.

John could never tolerate the full dose and eventually had to come off the Exjade completely. His doctor would start him on low dose and work up to a full dose. He never got to a full dose and even at a lower dose, would have to take a break after 3 week of being on it. Kidney and liver tests should be run frequently while on the drugs.
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 January 2017, FE is 233, HGB 11.7, WBC 5.1/ANC 4.0, Plts 90K.
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