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Old Fri Aug 2, 2013, 12:50 AM
TonyBegg TonyBegg is offline
Join Date: Jul 2013
Location: Santa Fe, NM
Posts: 25
thanks marlene and neil

Just wanted to thank the responders. K saw the hematologist who reassured her that platelets have a short half-life. I was worried something else was going on. I am learning more and found a review paper that says that PNH is a secondary disease (responsible for the hemolysis and the thrombophilia (clotting tendency)) but is usually associated with a primary disease (main culprits AA and MDS and the hematologist thought the immature red cells showed signs of MDS) that is responsible for the pancytopoenia. So my focus on herbal versions of complement inhibitors may be misplaced. Her marrow has 65% normal cells, 35% PNH and I don't think the folks that did the recent bone marrow aspiration knew about looking for the PNH I/II/III populations. The more pertinent question may be how to treat her pancytopoenia, and the doc did more blood tests to see whether it was the hemolysis (LDH) or the pancytopoenia that was causing the recent need for transfusions (after 20 years with few symptoms). I read a recent study (Nov 2012) that suggests a reason stimulation of the bone marrow preferentially releases PNH stem cells - apparently they are slippier and more easily dislodged than normal cells. I did not know that the manufacturer has programs to help access to Soliris treatment. The hematologist wanted to get a clearer pictures first. Thanks again!!
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