AA or not?

[ussoccer004]

Since starting my soliris for pnh diagnosed in jan 2014, treatments began March of this year, I was always lead to believe I had aplastic anemia. I have gone from hem of 6.9 in jan. To a 10.6 without transfusions just on soliris. My platelets are now back up to a normal range also to 157k from 7k back from 2006. The only thing that hasn't recovered is my white count. Nests at .08 lymphoma at .7. Also anytime I went on prednisone in the past my counts would normalize but once tapered everything would go really low. I went back to my hematologist at uf cancer center and he said that one of my bone marrows from the start was hypoplastic. But when repeated by uf and the nih my bone marrows were normal. So what's up with the white count?

[triumphe64]

Until recently, I needed a minimal amount of prednisone to make cyclosporine work. I am now only on Danazol.

[ussoccer004]

Originally Posted by ussoccer004

Since starting my soliris for pnh diagnosed in jan 2014, treatments began March of this year, I was always lead to believe I had aplastic anemia. I have gone from hem of 6.9 in jan. To a 10.6 without transfusions just on soliris. My platelets are now back up to a normal range also to 157k from 7k back from 2006. The only thing that hasn't recovered is my white count. Nests at .08 lymphoma at .7. Also anytime I went on prednisone in the past my counts would normalize but once tapered everything would go really low. I went back to my hematologist at uf cancer center and he said that one of my bone marrows from the start was hypoplastic. But when repeated by uf and the nih my bone marrows were normal. So what's up with the white count?

Meant neutrophils and lymphocytes. Not lymphoma or nests.

[Susan]

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.