I have completed 5 weeks of danazol. Very few side effects. Weight gain and unusual muscle cramps. I have had problems maintaining my hgb but that might just be a progression of my condition. Prior to this year I had not needed a transfusion in a couple of years. This year I have had 4 with the 2 most recent transfusions within only 4 weeks of each other. Just in for the long wait. Nih stated it could be 3 months to 1 year before any benefits are seen. It is nice to see others in the trial. Hoping the danazol will help us all.
Age 41, Dx AA 1991, ATG 2004-no response, TERC mutation identified 2010 (nih), Father SAA (dec), Aunt AML (dec), Nephew AA (TERC), Sister (TERC)