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Old Mon Nov 16, 2020, 12:44 PM
GoodDay5150 GoodDay5150 is offline
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Join Date: Sep 2014
Location: Centennial, CO
Posts: 140
Yes sir. I am not a medical professional, but I had PNH for man years b4 being diagnosed after my symptoms became very severe. That was in April of 2011 and I was transplanted later that year. My hemoglobin and red cell counts were so low that a general practitioner quickly and wisely referred me to a hematologist. It is my understanding that AA is fairly likely to come back as PNH, but I was only diagnosed w/ classic PNH. I took oral iron supplements after being diagnosed, and I think that someone told me that iron injections can be more effective. As far as Soliris is concerned, an HMO doctor was going to administer it to me b4 my transplant, but then decided against it. In my opinion, my disease was so far advanced that it probably would not have been that effective. As you probably know, PNH symptoms can range from almost non-existent to life threatening. If your sister is not aware, there are some great resources avail. online. They are

https://rarediseases.org/rare-diseas...emoglobinuria/


https://pnhsource.com/?gclid=EAIaIQo...SAAEgJOXPD_BwE

I was part of this study

https://ashpublications.org/blood/ar...-After-Reduced

we all wish your sister success in her treatment


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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