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PNH Paroxysmal nocturnal hemoglobinuria

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Old Wed Sep 10, 2014, 11:46 AM
GoodDay5150 GoodDay5150 is offline
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Location: Centennial, CO
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Mostly Good After Trans in 2011

I had a trans 2.5 yrs ago from an unrelated donor and I am mostly doing well. Some GVHD but not as much as some ppl have. I was never given Soliris or blood trans before my actual transplant. One doc changed his mind abt Soliris treatment and the clinic that actually did the trans and follow up care said "you have classic PNH, you need a stem cell transplant, we are looking for a donor, etc etc etc." My symptoms were getting very severe by that time. I had symptoms off and on for 6-8 yrs but was nvr duagnosed until abt 6 mos b4 my trans.
It seems that not all dr's agree on Soliris vs stem cell trans. One expert advised me that she would have given me Soliris and not a trans and that some other doctors agree with her. And as I stated prev, there was not much discussion between the dr's that treated (are still treating) me. There were all very matter of fact abt the whole pre trans work up, basically "this is what you need and this is what we are going to do." I was wondering what the few other PNH peeps out there have been told in respect to Soliris vs trans. And I am happy to answer othrs ?'s concerning my trans experience.
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Old Fri Sep 12, 2014, 09:21 PM
ussoccer004 ussoccer004 is offline
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Very nice! This brought a smile to a crappy day, thanks for making it a good night. I am happy you fought through the battle and beat everything.
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Diagnosed PNH 2014/ Autoimmune AA 2006 treated with prednisone/ Hemoglobin 10.1; ANC .55; Platelets 150K
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Old Sat Sep 13, 2014, 03:20 PM
Whizbang Whizbang is offline
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Great to hear things are holding up... May things continue to improve, and may good health continue...!

All the Best, and may God Bless.
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Married, father of three daughters; now 46; diagnosed w/ Major form MDS 6/18/2013; had low counts across the board; Multiple chromosome abnormalities; Finished 2nd round Dacogen 9/13; SCT - Oct. 31, 2013; Sibling match 10/10 ; 5.5% blasts down to 3%, now 1% (post BMT)
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Old Mon Sep 15, 2014, 02:45 PM
GoodDay5150 GoodDay5150 is offline
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Thanks for the encouraging words. I did my best to best to try and stay positive the whole time, which is hard for anyone to do. One thing I discovered is that a lot of non medical ppl don't really understand PNH, immune systems, bone marrow failures, etc., the associated drugs and their side effects, etc. So don't be surprised if you run into some of that. And if you are going to ever receive a transplant, be prepared for A LOT of tests, thousands of pills, and a lot of dr's apppointments. With that, an increased risk of other bad diseases related to the treatments and associated meds, but I would do it all over again. I was told that my anon donor was an absolute perfect match, so that helped a lot as well.
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