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Old Thu Oct 2, 2008, 01:40 PM
Connie Connie is offline
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Join Date: Aug 2006
Location: Kalama, WA
Posts: 1,322
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Catherine, sounds like you have had quite a time. But your counts don't look bad to me. The one thing I am thinking is that it really hasn't been very long since you have been treated with ALG. I had kind of a similar experience as you. Was treated with ATG, was in a very short remission, then treated with ALG. I am happy to say that now I am doing pretty well. But it took a long time. A long time for my counts to go up and a long time to feel as well as I do. That was about 7 years ago that I was treated. Everyone has a different response time, and yours sounds pretty good to me. But I am hoping that your Hem. isn't premature in taking you off of Cyclosporine. I was on it about 3 years after treatment. Or at least it seems that long to me. And if you do stop taking it, be sure to do a very slow taper. Took me about 6 months or longer. And if your counts drop much when you taper, slow it down some more. As far as energy goes, that might take a while. These last couple of months, I am not needing to nap as often. But I still do get over tired and have to rest. I do know of some who are doing well in a very short time. Just listen to your body and give it time and the rest that it needs.
How long does remission last? Well, that can really vary. I have heard of 5 years to 20+ years. I am hoping for the 20+ years.
For me, I looked at BMT as a very last option. Not to be taken lightly. Only when nothing else is available.
I hope this all helps some Catherine.
Connie
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Connie, diagnosed with AA in Nov. of 2000. Had ATG treatment with short remission. Then had ALG treatment in 2001. Am in remission as of 10-2007.
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