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Old Wed Mar 15, 2017, 11:49 AM
kirag1964 kirag1964 is offline
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Join Date: Mar 2017
Location: Philadelphia
Posts: 20
Quote:
Originally Posted by Hopeful View Post
Hi kirag1964,

I am not a doctor or in the medical field but may be able to provide some insight to your question...

Having a normal ARC is actually a very good thing. Dr Young published a study awhile back that showed that people with a normal ARC (or ALC) were more likely to be responders to immune suppressive treatment (IST) for their SAA. My understanding is that a normal ARC means that the stem cells are still capable of pumping out a bunch of immature red blood cells (i.e. the factory is still working). However, if you have an active immune attack going on, it may be destroying them just as fast.

Don't wait a month to see a specialist in AA. Be a squeaky wheel. More favorable responses to treatment are achieved within 30 days of diagnosis. An AA specialist knows this and will try to accommodate you in their schedule.

Have you been tested for PNH?
How is your ANC?

Also, check out the videos put out by AAMDSIF to get the latest encouraging news about diagnosis and treatment:
https://www.pathlms.com/aamdsif/categories/363/courses

Good luck!
Thank you so much for your response! That is very encouraging. I am good at being a squeaky wheel (lots of practice from having a kid with intractable epilepsy), and will keep pushing for an appt. I think that the main issue has been that Dr. Luger has been out of the country - and she may have been further delayed by yesterday's weather. Hopefully once she is back and has a look at my information they'll get in touch with me.

I do not think I have been tested for PNH. Would that be consistent with pancytopenia, or would I just have low RBCs/Hg?

The ANC is not a number that has been given to me in that form, but I think it is the same as the absolute # of granulocytes (is that correct?). If that's correct then my ANC is good because while my overall WBC is a bit low, that seems to be due to low normal monocytes and below normal lymphocytes, while my granulocytes are 2.0 (in the normal range). Again - I have no idea what all this adds up to but that's what my CBC says!

Hopefully some answers soon! I'll keep posting here as things progress. And again - thank you so much!
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