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Old Wed Sep 1, 2021, 11:41 AM
Matthew42 Matthew42 is offline
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Join Date: Jul 2021
Location: USA
Posts: 130
Well, I have some bad news to report: my mother fell and had internal bleeding in her brain from severely low platelets. She is expected to make a good recovery from all the signs she has showed since the fall (last Friday).

Interestingly, her hemoglobin rose to 7.9 from 7.5 one day with no transfusions, and her neutrophils went up to 1100/1300 from 500 for few days after the fall. Now, they've all fallen back to where they were before the fall. We're not sure if the horse-ATG is starting to kick in, or it was the hemorrhagic bleed. The doctors say it was not due to the bleed, or shock to the body. They said bone marrow wouldn't start working all of sudden from a brain bleed.

Did the ATG start to kick in at 19 weeks post ATG? She did have increased cellularity in her bone marrow since last biopsy a weeks ago.

How long can you be transfusion-dependent before horse-ATG kicks in? I read that some people on here were dependent on blood transfusions for 6 months or more before the ATG started to work.

We're hoping for the best, but, after this fall, we realize the dangers of the disease (low platelets, etc.). We can't give up hope yet. The bleed is not the issue, no matter how serious it was. She can recover very well, the doctors said, because she has no organ issues and otherwise healthy. But if she cannot get the aplastic anemia under control, her long-term outcome is not good. We know this in our hearts.

Rabbit-ATG is next in a few months, if the horse-ATG doesn't kick in. We're running out of options.

I found out my mother has a small PNH clone in her last biopsy. They said that is a good sign that ATG will eventually work. It means her condition is highly autoimmune, I believe.

Health and happiness to all.

Last edited by Matthew42 : Wed Sep 1, 2021 at 12:13 PM.
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