[TonyBegg]

Karin has had PNH (39% clone) for 23 years. July 5th this year she desperately needed RBC and platelet transfusions for the first time (was yellow from bilirubin a break-down product of hemoglobin). We are trying Papaya Leaf extract to stabilize the thrombocytopenia (early days yet but platelets stable at 17000 this week and last week). LDH is 630, neutrophils 0.75 x 10^9 / Liter, normal marrow cellularity. Have seen two case studies in which Rituximab dramatically reduced/eliminated the PNH clone, one was AA/PNH and the other was non-Hodgkin's Lymphoma/PNH (where Rituximab was used with heavy chemo). Dr Brodksy at Johns Hopkins did an in vitro study of Rituximab and PNH B-cells - cytotoxicity of Rituximab is higher for PNH B-cells because of absence of GPI-anchor, but he does not see it as a treatment for PNH. T-cell suppression tends to favor the PNH clone but the AA/PNH case study author suggests the opposite is the case for B-cells. Another paper suggests that persistent B-cells can trigger the T-cells that cause autoimmune diseases like AA. There has been a Phase II trial for Rituximab and moderate AA (NCT 00229619) although I cannot find results for it. Would be great if treating the AA with this not-so-toxic regimen (Rituximab) also put the PNH into remission. Q. Does anyone out there know anything about this treatment for AA/PNH?? I am aware of Eculizumab but that does not treat the thrombocytopenia and can lead to an increase in the PNH clone because it stops lysis of PNH cells, and is a lifetime commitment whereas Rituximab involves short courses with gaps in-between - only 2 in the AA/PNH case study. Of course if thrombosis is occurring you had better be on it!