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Old Tue Jul 10, 2018, 04:46 PM
GoodDay5150 GoodDay5150 is offline
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Join Date: Sep 2014
Location: Centennial, CO
Posts: 150
Hey Tony, we are all sorry to hear that you have PNH. I was probably around your age when I 1st started having symptoms but was never diagnosed until a long time later when I could no longer ignore the symptoms. I did not research my disease until after I was diagnosed. I had a blood test done in 2011 and the dr himself called me to tell me the results. I super low HGB and RBC'S. I could tell he was pretty freaked out. I met with a specialist in short order and then had a bunch of tests done, BMB, etc. That dr emailed me saying that he was worried that I have PNH. He was right. He was going to treat me w/ SOLIRIS but then changed his mind, primarily bcse he had only treated 1-2 other patents w/ it. (this was in 2011)I actually met one of the people at a PNH conference who was part of the trial. Anyway, it was determined by him and a specialty clinic that I was a good candidate for a transplant, and a donor was found pretty quickly. I am actually part of this study


http://www.bloodjournal.org/content/...o-checked=true

pretty crazy, I know. As far as myself, I had debilitating fatigue, severe headaches and abdominal pain, etc etc. My disease progression got worse and worse the closer I was to being diagnosed, so I was pretty relieved to know that something could be done. I have a lot of posts here, and we are all willing to help you out w/ any questions you may have.

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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