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Old Fri Dec 18, 2015, 04:55 PM
GoodDay5150 GoodDay5150 is offline
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Join Date: Sep 2014
Location: Centennial, CO
Posts: 150
Hi NasC0, I was diagnosed w/ PNH in 2011 and had a stem cell transplant later that year. I also took anticoagulants until my transplant along w/ iron and folic acid. Make sure that your girlfriend checks w/ her doctor 1st, but I would maybe suggest that she take some sort of a vitamin B supplement, and check into getting iron injections. I also know that some prescription drugs can react w/ natural remedies, so make sure to check w/ a doctor before mixing meds. Her hemoglobin is not super low, but if the disease progresses it will go lower and she will need transfusions. I never had Soliris, but I was told by the HMO that I had at the time that it would have been covered. Good luck in her treatment, and there are many great people here to help answer your questions.
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MARIO, 52, DIAG IN 2011 W/ PNH, MUD IN DEC 2011. MINI TRANS PSL DENVER/ SOME MILD GVHD. CURRENTLY TAKING JAKAFI FOR GVHD.
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