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Old Mon Dec 21, 2015, 02:15 PM
GoodDay5150 GoodDay5150 is offline
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Join Date: Sep 2014
Location: Centennial, CO
Posts: 150
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, 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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