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Hi Heather,
First of all I'm glad the post was helpful for you.
I really don't have an answer for you regarding PNH. I do know that NIH has done AA/MDS clinical trials for Promacta. I did a search for Promacta/PNH but really didn't find anything.
There was a concern for cataracts with Promacta but NIH has decided it wasn't an issue so they have stopped my husband's eye exams. There was also a concern for an increase in blasts but I don't know that it has been much of a probem. It wasn't for my husband. If I'm not mistaken Nplate, which is the same type of drug, did have a problem with increased blasts.
I'll e-mail our research nurse at NIH and ask if they have any clinical trials for Promacta/PNH and will get back to you.
I wish you and your husband well.
God Bless,
Sally
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