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Old Mon Aug 8, 2016, 11:22 AM
Hopeful Hopeful is offline
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Join Date: Jan 2009
Location: California, USA
Posts: 766
Hi Sarah,

Here is a layperson's analogy to help you understand what may be going on in your marrow, if you have immune-mediated AA...

You can think of your bone marrow as a factory that produces blood cells. This factory is being attacked by evil T-cells which are trying to destroy it. The evil T-cells will try to destroy every blood cell that your factory (marrow) produces. Then they will try to destroy the factory itself. If the factory is destroyed, it won't be able to produce blood cells and you will have SAA. Right now, your factory is damaged but it is still standing. Since it is damaged, it is not producing the normal amount of blood cells. I think your doctors are trying to increase the amount of blood cells that it is producing with the help of Etrombopag and Procrit(?). Meanwhile, they are hoping that the cyclosporine can help fight off some of the evil T-cells. Every day, the evil T-cells are expanding. Is the cyclosporine enough to win the war? Or do they need a big bomb like ATG to save the factory?

If your doctor truly thinks you have AA, then I would discuss with him why you are taking prednisone and whether you can taper off it.

Etrombopag is really a new drug, and although it shows great promise in the treatment of AA in combination with ATG, it is in the clinical trial stage. In other words, it is experimental and the long term consequences are unknown.

Watch-and-wait is the hardest part. Look at your diet and exposures. Make sure you are not taking any suspicious over-the-counter medicines/drugs, avoid all alcohol, don't smoke (if you do), eat organic, and stop drinking teas because of possible contaminants. These are all things to try now, in case you are unknowingly ingesting something that is harming your body.

If things start working again, maybe you will be able to avoid the ATG. Should you need it in the future, it would be good to discuss now whether horse/rabbit ATG is an option there and whether your hospital has experience administering it. This is just for planning purposes, should you need it in the future.

How long are you going between transfusions?
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55 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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