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Old Tue Mar 14, 2017, 11:26 PM
Hopeful Hopeful is offline
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Join Date: Jan 2009
Location: California, USA
Posts: 766
Quote:
Originally Posted by kirag1964 View Post

However, this is really confusing me:
- despite having very low marrow, and low RBC count, my reticulocyte count in my blood is 75 which is in the normal range. This makes NO SENSE to me (how is my insufficient bone marrow pumping out a sufficient number of baby RBCs) and seems to totally not fit the criteria for AA. My doctor could not offer any explanation except to say that my "normal" level was actually "low" because with such a low RBC count he would expect my level to be high (???)

Can anyone offer a possible explanation?? Obviously my new doctor will go over everything and perhaps order new tests as well, but right now I don't have an appt until April 18th. They are hoping to move it up, but the doctor is currently out of the country and I am not sure when they'll be able to fit me in.
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!
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55 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. small trisomy 6 clone, low-dose cyclosporine dependent
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