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Old Sat Feb 17, 2018, 02:24 PM
Hopeful Hopeful is offline
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Join Date: Jan 2009
Location: California, USA
Posts: 769
Hi Rarity,

PNH is a separately ordered test. It is usually part of the differential diagnosis when a patient presents with unexplained bone marrow failure and anemia, especially in the presence of elevated LDH. If your husband hasn't had it done, I would not delay in requesting it.

Even having a small percentage of PNH cells is significant when determining a treatment plan. Having a large PNH clone may require a different treatment plan all together then typical MDS, even though the two may occur simultaneously. So, it is important to rule this out.

As I have a small PNH clone, my hematologist will periodically monitor my LDH to determine whether the clone is expanding in size. My LDH has never been elevated but I do have a sub-clinical PNH clone. I am sure if my LDH became elevated and I was severely anemic, my doctor would retest my PNH.

I also have NRBCs, schistocytes, teardrops, etc, but in small numbers. I agree with maggiemag that it is the percentage that matters.

Likewise, I think that it is the relative cellularity that matters. Mild hypocellularity would be less concerning than 10% cellularity, for example. Keep in mind that the marrow can be patchy and not consistently hyper- or hypo- cellular.
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58 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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