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Old Wed Oct 31, 2018, 12:59 PM
Hopeful Hopeful is offline
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Join Date: Jan 2009
Location: California, USA
Posts: 718
Hello Su,

Welcome to the forum! You may want to start a brand new post to get more visibility to your questions.

Did you doctors do a BMB and many other tests to rule out other possible causes for your low counts?

If your ANC is normal and you are not transfusion dependent, most doctors will watch-and-wait for moderate AA. However, there have been many studies for SAA that show the time between diagnosis and treatment is absolutely critical for response. I don't think the same studies on the timeliness of treatment have been done for MAA, unfortunately.

If you first doctor is adamant about starting treatment right away, take note! If your immune system is attacking your marrow, you need to stop the attack quickly to prevent further damage.

Typically the transplant doctors are less interested in IST. So, if you are confused by the different doctor responses, get an urgent appointment with another non-transplant AA specialist.

Good luck!
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52 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. Tried slow cyclosporine taper over 4+ years. Platelets fell, so back on cyclosporine. Trisomy 6 clone in 5% of cells.
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