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Old Wed Sep 6, 2017, 06:09 PM
GoodDay5150 GoodDay5150 is offline
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Join Date: Sep 2014
Location: Centennial, CO
Posts: 150
Nearly 6 Yrs Post Transplant

Just a quick update to any other PNH patients who have been transplanted or may be planning for one in the future. I am mostly doing well and I no longer take oral anti-rejection meds. I do have some skin, muscle, and joint related GVHD which has been improved w/ iv infusions of Rituxan. There is a noticeable improvement and hopefully my GVHD will continue to slowly improve as it has up to this point. I'm finally getting used to not yawning and falling asleep during the day as I did for many years before I was transplanted! My transplant doctor(s), (as well as myself) are pleased w/ my progress so far. I wish everyone impacted by this disease success in your treatment and to try and stay positive!

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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