I wasn't expecting more replies while writing my last post!
Thank you very much!
Marlene, I am also questioning why she is still on the antimicrobials despite her ANC improving a great deal (almost to normal levels). I know she has been on them for prophylactic reasons (I forgot to mention the monthly infusions of pentamidine too, ugh) and I understand wanting an abundance of caution as it seems infection is one of the biggest causes of mortality among AA patients.
Interesting to note her hematologist did his fellowship at NIH. I have no idea how to even begin to ask about having him to consult someone else without sounding like I am trying to play doctor myself. My mother has been very steadfast in following everything the hematologist wants but I am very proud of her for standing up and saying she wants to quit the Aranesp and also try to come down on the prednisone more.
Matthew42,
Looking at the past several months of blood results, her neutrophil % has very often been higher than the lymphocyte %. Every time she has been able to negotiate a reduction in the prednisone, it gets a little worse for about a week before leveling out again. Her ANC has been consistently above 1.5 for at least two months now.
I fully agree that patience is absolutely key and I have definitely heard of stories from people who took 9, 12, 24 or more months to show meaningful response. Both me and my mother are pretty on board with this and I am certainly willing to be patient and support my mother as best I can for as long as it's needed. In an effort to feel less useless in all this I've even been donating platelets as often as I can although I haven't been able to in a little while due to dumb circumstances.
Thanks again, and take care all.