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Old Thu Oct 10, 2013, 02:39 AM
NLJabbari NLJabbari is offline
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Join Date: Aug 2006
Location: San Jose, California
Posts: 139
Hi StephM, sorry to hear about your brother having to go through this. I was wondering about his dark urine. By any chance did they check your brother for a PNH (Paroxysmal Nocturnal Hemoglobinuria) clone as well. PNH is red cell destruction. Some AA patients present with a PNH clone at diagnosis as well as AA. Besides other symptoms, Dark Urine especially in the morning can be an indicator.

Also, besides Cyclosporine, many patients also take some type of prophylaxis to prevent pneumonia. Something like Bactrim or Pentamidine.

Well, take care--hope your brother does well with this treatment.
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06/2004 my son was dx with SAA at the age of 10. No sibling BM match. He underwent ATG (H)/CsA. Relapsed 05/12 & dx'ed w/PNH. Currently in wait/see mode for Solaris as he is asymptomatic...
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