Quote:
Originally Posted by Surfer Girl
Just recently diagnosed and found out that I have a t-cell and maybe b-cell immune deficiency in addition to the AA. They put me on Dapsone for PCP prevention and got acquired Methemoglobinemia. Has anyone had problems with immune deficiencies related to their bone marrow failure or complications from the medication Dapsone? Anyone been tested for inherited Methemoglobinemia? NADH or Hemoglobin M testing? Thanks!
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I was on Dapsone years ago for an autoimmune blood disorder and also developed Methehemoglobinemia-scary-it turned me blue!
I now have Hypogammaglobulinemia which is treated with high dose IVIG and either MDS or AA. The doctors are doing a 3rd BMB in Nov to try and determine the exact diagnosis and whether I am a candidate for a BMT.
I also took Cytoxan 2 different times, for my blood disorder, which they think probably led to my bone marrow damage.
Hope you find some answers!
~Coping