Thread: AA or not?
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Old Fri Nov 28, 2014, 09:03 AM
Susan Susan is offline
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Join Date: Sep 2003
Location: Chicago, Il
Posts: 101
AA/PNH and WBCs

Hi ussoccer! I love soccer by the way. I have the exact same situation.
Soliris is working well for the PNH. My initial dx a the the NIH was mild/moderate AA with PNH. Years later I had 2 normal bone marrow results, AA gone. My platelets and wbcs have been moderately low all this time. Plts did go up while on Prednisone, it can happen but the drug is very harmful. Unknown if Pred caused the increase, could be coincidence.

Some with PNH have "lazy" marrows with low blood counts but with PNH alone the counts aren't as likely to dip as much as in AA. Also the cellularity of marrow can vary over years. It is also variable within the marrow. So one could have say 3 marrow studies the same day and you could get 3 different results. I can't image it would be a huge difference though. it could also be a more experienced center will provide more accurate results with better techniques and quality of the sample.

I don't have an answer about the lymphocytes or wbcs/leukocytes (?) being at .7. Hopefully someone else can answer this. I've focused on my PNH for so long I'm not totally up to speed on AA or that part of it.

How far apart were your marrow biopsies? 0.8 ANC is not that bad. Many things can cause it to fall. Illness, antibiotic use, vitamin and mineral levels and other factors I don't know of. Only if it becomes a trend is it important or if it falls further. However the other count sounds like it may be more serious. I just know, or think I know that the ANC is the more important #. Correct me anyone if that's wrong. Someone else will answer too.
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AA/PNH Dx 1998, Warfarin, Soliris
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