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Old Wed Sep 10, 2014, 11:46 AM
GoodDay5150 GoodDay5150 is offline
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Join Date: Sep 2014
Location: Centennial, CO
Posts: 150
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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