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#1
Fri Aug 31, 2012, 12:37 PM
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Immune Deficiency and Methemoglobinemia
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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Lisa, Retired Air Force, diagnosed AA 6/2012, TERT and Living Life to the Fullest 
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#2
Sun Sep 2, 2012, 01:50 AM
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Hi Surfer, very interesting. I have Aplastic Anemia and after reading your post, I looked at the possible Dapsone side effects and also found Aplastic Anemia can be a side effect of Dapsone. I never knew this and ironically was put on Dapsone following an autologous stem cell transplant in 2011. I was only on Dapsone 2-3 weeks and my team decided to change me to another medication because it seemed to raise my liver counts. According to the side effects I read, AA symptoms can appear 2-12 weeks following the Dapsone and my cell counts started dropping within that time line and then totally crashing. We always wondered why this happened because AA is not a typical side effect of an Auto transplant. I am also suffering from immune deficiency and now I wonder if this explains these issues.
I'm so sorry you had this side effect and hope you can be treated effectively. Best, Excuse typos sent from my cell phone
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Dena Age 54; DX Heavy Chain (AH) Amyloidosis 6/10; AutoSCT 3/11; Amyloidosis remission 6/11; DX SAA 7/11; Horse ATG 3/12; Mini MUD SCT 1/13; Recovered from SAA 5/13 & feeling great
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#3
Sun Sep 2, 2012, 08:07 PM
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Dapsone
Hi Dena- Thank you for getting back with me- I'm going to NIH in a week to find out more what my options are - especially with the immune deficiency related to the AA. Also- to see if I get tested for hereditary Methemoglobinemia. Glad I'm off the Dapsone- it has a lot of side effects.
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Lisa, Retired Air Force, diagnosed AA 6/2012, TERT and Living Life to the Fullest
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#4
Fri Sep 21, 2012, 05:56 PM
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Quote:
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
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