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#1
Tue Nov 10, 2015, 08:47 PM
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Danazol to boost rbc?
I am currently classified as MAA. Due to low rbc count my doctor has suggested adding low dose Danazol to my current cyclosporine regimen. Despite decent hemoglobin level of 9.7, I'm still experiencing considerable fatigue and am easily winded upon comparatively minor exertion --- i.e. climbing a flight of stairs. Does anyone have experience to share about Danazol?
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#2
Tue Nov 10, 2015, 09:25 PM
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It worked for me. It took a few months to kick in.
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Dallas, Texas - Age 81 - Pure Red Cell Aplasia began March 2005 - Tried IVIG - Then cyclosporine and prednisone. Then Danazol, was added. Then only Danazol . HG reached 16.3 March 2015. Taken off all meds. Facebook PRCA group https://www.facebook.com/groups/PureRedCellAplasia/
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#3
Wed Nov 11, 2015, 06:37 PM
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My doctor also suggested danazol to boast my HGB, mine however was lower than yours and we were encountering hemolysis. It is worth a shot as I believe that if you have to chose between danazol and prednisone it is a "better" choice .... all relative though.
I tried it but it was not my friend as within 2 days of commencing I started having debilitating headaches/migraines and it made my cyclosporine toxic i.e. my trough levels went from about 200 to over 500 in about 48 hours. So I had to stop and unfortunately my hgb is still low as the hemolysis continues. It took me over 2 weeks to fully recover. Good luck.
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#4
Sat Nov 14, 2015, 02:39 AM
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I also have MAA
Hi there, Danazol did boost up my HGB, about an 11 now, after being on it since 2011. I did have to start Promacta this year due to platelets headed to low 20's. My WBC is still low. I hope this helps and that it works for you too!
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Linda, 47 yo, married, mother of a teen, moderate AA w/ TERC mutation (2007 NIH), Pulmonary Fibrosis 2010, was on Danazol study (Aug 2011-2013 & restarted 9/14/15), last transfusion May 2011. On Promacta now. Needing a double lung and stem cell transplant.
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