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PNH Paroxysmal nocturnal hemoglobinuria

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Old Fri Dec 18, 2015, 05:43 AM
NasC0 NasC0 is offline
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PNH management and Quality-Of-Life

Hello all, I am (unfortunately), a newcomer to the forums and the PNH scene overall.

My girlfriend (21) was diagnosed with PNH about half a year ago, with symptoms like shortness of breath, dizziness and yellowing of the skin. Overall it's been going pretty well, she hasn't had a need for a blood transfusion yet.

We were waiting on Soliris being approved for distribution here in Bulgaria, but since our country's medical budget is fairly tight, the green-light hasn't come through and probably won't for a few more years. Until then, her primary has started her on light doses of anti-coagulants (Xeralto) for thrombosis prevention. Her hemoglobin levels have been pretty stable for the duration, at about 95 (or 9.5 I believe in US metrics).

However, her LDH and bilirubin levels are pretty high - over 1000 each (I don't know the translation in US metrics, but it's about 3-4 times over the norm). I wanted to ask you guys what do you do to manage your or your loved one's PNH in ways of alternative medicine and natural products. She's been having a lot of beetroot lately and has been taking iron suplements, but from what we know about beetroot, it increases the change of an ulcer, which is not ideal given her being prone to hemorrhage because of the anti-coagulants.

Also, I was wondering if you guys know anything about alternatives to Soliris being developed. So far i've heard about AMY-101 and http://www.fiercebiotech.com/story/b...ris/2015-07-23, but nothing concrete.

Thank you all, and good luck in your fight.
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Old Fri Dec 18, 2015, 04:55 PM
GoodDay5150 GoodDay5150 is offline
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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, 46, DIAG IN 2011 W/ PNH, MUD IN DEC 2011. MINI TRANS PSL DENVER/ SOME MILD GVHD.
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Old Mon Dec 21, 2015, 08:52 AM
NasC0 NasC0 is offline
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Hi GoodDay5150,

Thank you for the quick reply. She's currently taking some iron supplements. Her latest bloodwork came in today and her hemoglobin has dropped lower at 9.1. By progressing of the disease, do you mean her clone size increasing, or is there another measure of progression, since it is already way up there at about 95%.
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Old Mon Dec 21, 2015, 02:15 PM
GoodDay5150 GoodDay5150 is offline
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Hi NasC0. Clone size is part of the progression of PNH, but I'm speaking more specifically in terms of quality of life. With that, Soliris does not work for all patients w/ PNH. In respect to myself, my symptoms were so severe that a transplant consultation was done soon after diagnosis. And of course, blood clots are a risk as you already know. I would recommend that your girlfriend address these issues with her doctor or another specialist.

Mario
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MARIO, 46, DIAG IN 2011 W/ PNH, MUD IN DEC 2011. MINI TRANS PSL DENVER/ SOME MILD GVHD.
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