A recent study has shown that HPN-type cells are responsible for oxidative stress due to increased concentrations of intracellular reactive oxygen species (ROS) or decreased antioxidant status. It has been proven that the preparation of fermented papaya (PPF), a nutritional product derived from carica papaya, regulates the parameters of oxidative aggression in vitro and in vivo. In order to clarify the pathogenic link between oxidative stress and hemolysis in PNH, the effects of each inhibitor, eculizumab and PPF, were investigated independently in Japanese patients with PNH.
Conclusion: Erythrocytes and sera derived from Japanese patients with PNH were very vulnerable to oxidative stress, compared to healthy subjects. Eculizumab was effective in controlling oxidative aggression, in addition to hemolysis, indicating that the increase in oxidative stress in PNH was mainly due to complement-mediated hemolysis. Since PPF had little effect on hemolysis but improved oxidative stress and QoL, it could alleviate the symptoms related to oxidative stress and be a therapeutic option for the supportive treatment of PNH.
Originally Posted by TonyBegg
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.