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Old Tue Sep 21, 2021, 09:40 PM
Matthew42 Matthew42 is offline
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Join Date: Jul 2021
Location: USA
Posts: 130
Dear N Dean,

My mother has SAA and it's been 5.5 months since her horse-ATG. She recently had a big rise in neutrophils for about two weeks (averaging about 1200, as opposed to about 500 for the past 5 months. A big rise in neutrophils does mean something. What else would be kicking them up besides the ATG? Only prednisone or some steroid can cause a false rise in neutrophils.

My mother has also had a rise in RBC and hemoglobin, but then will drop sharply. She's never had rises in hemoglobin after a transfusion - only a steady decline. She normally gets a blood transfusion every 9-11 days, but recently it's been 2 times a week. You say that she's getting transfused more often...but she's getting these "spikes" in hemoglobin between transfusions. That has never happened before. We're still not sure, but something seems to be changing in her marrow. Platelets, however, have not improved in the least (she still gets 2 platelet transfusions a week).

At any rate, horse-ATG can take 9 months or more to really kick in (several people on here where it took up to a year or more!). If there had been no change at all in your son's blood counts at 6 months, then I might say that horse-ATG seems to be not working, but that is not the case just yet, as he has had a rise in neutrophils over time since ATG.

I am not sure if vsaa vs saa makes a real difference in response time. It's just that vsaa means your average neutrophils are under 200, whereas in saa, the neutrophils are higher.

I wish your son the best of luck and health. May he heal from this disease. My mother has been suffering greatly. She's in the same boat as your son. It's been 5.5 months out from horse-ATG. She thinks that she will never get better and cries every day. I think she's given up, but I tell her that the horse-ATG can still work. Her neutrophils are now averaging over 1000 and she has sharp rises in her RBC count and hemoglobin (but they still fall after a few days).

Keep believing, keep strong. I give your son much love. This is hard. He can do it. Just believe....
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