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Hi again SAA Mom,
Also, as per your initial post 'Headache after ATG, on oral steroids and cyclosporine', I have been there! I think I know how your son feels. I responded to the ATG/Cylosporine very slowly and was exhausted with terrible headaches for several months. 18 months post-ATG I still have fatigue and headaches, but how I feel has improved by 90%.
I believe severe anemia contributed to my headaches and certainly my fatigue, as I hovered just above transfusion levels for months. It felt like a miracle for the blood to finally come back into my body, and I hope very much this treatment will have the same effect for your son.
I personally have found no medicine at all to help my headaches. But exercise, eating well, staying hydrated (I try for a gallon of liquid a day) - for me sticking to that regimen is what helped.
I'm still on a full dose of cyclosporine (500 mg/day like your son). Reason being that I'm often moderately neutropenic (ANC 600-1000) although my other counts have recovered better - my doctor is concerned of relapse if I taper. I've came to tolerate the cyclosporine better with time, but it can be a rough drug and I am sure looking forward to taking less of it!
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Kevin, male age 45; dx SAA 02/2012 - Hgb 5.8, platelets 14, ANC 200, 1% cellularity. Received ATG 03/2012. As of 03/2015, significant improvement - Hgb 15, platelets 158, ANC fluctuates around 1000, Lymphocytes 620. Tapering cyclosporine. BMB 20-30% cellularity.
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