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Old Sat Mar 31, 2012, 12:48 AM
Hopeful Hopeful is offline
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Join Date: Jan 2009
Location: California, USA
Posts: 767
Hi wyle.e.kyote,

Wow - You have had a wild ride!

Make sure that you are being seen at a facility that has experience with the treatment of AA/MDS and the administration of ATG. Consulting with an expert in bone marrow failure diseases is key to proper diagnosis and treatment. Don't be afraid to ask your doctor how many other patients he has treated with this disease and whether the hospital has experience administering the ATG. If they aren't experts, use this time to consult with one. I can not stress the importance of this!

Why do your doctors think that you have Unclassified MDS? Why were you given prednisone and rituximab? Did your doctor run you through a battery of tests to rule out other possible causes of your bone marrow failure?

It is common to do a skin test before administering ATG to determine whether you are likely to have an adverse reaction to it. Confirm that the hospital does this!

Everyone is different, but for me the ATG was no worse than a bad flu. It is scary the first night as you can spike a very high fever. However, if you are in a good facility, the nurses will react accordingly.

Best of luck! Keep in mind that people who have an uneventful experience with ATG are less likely to write about it.
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58 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. small trisomy 6 clone, low-dose cyclosporine dependent
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