Quote:
Originally Posted by Hopeful
Hi Matthew42,
Is your mom on cyclosporine now? Also, did her doctor discuss Exjade (or equivalent) for her iron overload? Did your mom have Eltromobag initially? Has she had her EPO levels tested?
Has there been any rise in her hemoglobin or platelets? How frequent are her transfusions?
You can't rush the recovery from Aplastic Anemia unfortunately. You can stop the immune attack with ATG, or more slowly with cyclosporine, but the marrow can still take years to recover.
I remember my doctor wasn't happy with my response at 3 months as well and didn't think the ATG was working. However a few months later my platelets took a small step forward and the recovery began.
Stay positive!
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Thank you! I appreciate your response.
Yes, she is still transfusion-dependent (blood and platelets). A few weeks ago, she went two weeks without a blood transfusion (her hemoglobin dropped much more slowly), but things are not like that now. She's back to every 7-9 days for RBC transfusions.
She saw her hematologist at the end of last week. There was some positive news: her bone marrow cellularity increased 5% (not much, but it's enough to know the ATG is working). She also has a reticulocyte count of > 30,000, so she said that bone marrow is indeed producing red blood cells, and ATG is working for sure. And her neutrophils are still averaging +500 over 6 weeks. The hematologist said that while this is all positive news, the levels don't always match improvement seen in bone marrow function; in fact, it can take the body a long time for higher levels of hemoglobin and platelets to be reflected after bone marrow function improvement is proven. I didn't know all of this. Yes, she said it can take years for bone marrow to completely heal from ATG (very shocking to find out), but she doesn't think my mother should wait real long because of her age to do a second ATG "to get her over the hump." She wants her off RBC transfusions in the next few months (she's not that concerned about platelet transfusions).
As far as iron overload, she said it's okay to let it be a for a while before treating it. She has no heart issues and gets weekly blood tests, and is otherwise healthy. Letting it fester for a long time (1 year or so) is when issues can start, unless the iron overload is already excessively high (+ 10,000). She's not against using natural means to lower ferritin levels. Also, Exjade is very potent, and she doesn't want her on it now.
Yes, my mother has been on cyclosporine for a few months.
Health and happiness to you!