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Old Tue Jul 30, 2013, 12:02 AM
TonyBegg TonyBegg is offline
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Join Date: Jul 2013
Location: Santa Fe, NM
Posts: 25
herbal alternatives to soliris?

Soliris works by blocking the complement cascade at C5. It is an expensive drug and my PNH person (mother of my kids (K) - we divorced some years ago so no longer on my insurance - waiting anxiously for the ACA bronze to platinum plans) is not insured. I wondered whether anyone on the forum had tried either traditional medicines or herbal remedies that are known to block the complement cascade? Such compounds are being studied by the medical community and I found one paper talking about Rosmarinic acid (from Rosemary, Sage and Perilla among others) which reduced the classical pathway by 50% with a blood serum concentration of 180 micro-mols/liter and the alternative pathway by 50% with a blood serum concentration of 160 micro-mols/liter. It attaches to C3b apparently. Trouble is taking a single 200 mg capsule only achieves 1.15 micro-mols/liter, and PNH is a very sensitive disease to any changes in the complement. K is needing transfusions and it seems it is the platelets that are falling fastest. I think this is because of the Membrane Attack Complex due to intra-vascular hemolysis attacking even healthy (transfused) platelets.
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