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PNH Paroxysmal nocturnal hemoglobinuria

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  #1  
Old Tue Jul 30, 2013, 01:02 AM
TonyBegg TonyBegg is offline
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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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Old Wed Jul 31, 2013, 09:07 AM
Marlene Marlene is offline
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Just wanted to acknowledge your post. I know very little about PNH and haven't see much in the way of alternative treatments for it.

Transfused platelets don't last very long even in patients without PNH. Platelets are trickier.
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of January 2017, FE is 233, HGB 11.7, WBC 5.1/ANC 4.0, Plts 146K.
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  #3  
Old Wed Jul 31, 2013, 03:18 PM
Neil Cuadra Neil Cuadra is offline
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Tony,

Your ex-wife could investigate the Alexion OneSource program, which assists patients in getting Soliris. See alxn.com and soliris.net.
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Old Fri Aug 2, 2013, 01:50 AM
TonyBegg TonyBegg is offline
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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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Old Tue Aug 6, 2013, 09:49 PM
dmscott65 dmscott65 is offline
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PNH financial help

Yes, Alexion does have help for PNH patients in need of financial assistance. I was just diagnosed with PNH within last 2 weeks. My doctor had to submit paperwork to the insurance company ( I am insured) and the pharmaceutical company, so they could coordinate the financial issues. A wonderful nurse case manager was assigned to my case immediately and gave me good news on Friday about approval. I was dx'd SAA in 2010 and went into remission after h-ATG and cyclosporine regimin. Had a bout with cancer last year and platelets have been falling ever since. Dr thinks the PNH could be the main culprit and wants to start me on Silaris immediately to see if that will turn the platelet issue around. If not, then that points more toward the reoccurence of the AA and I'll probably be facing another round of immunosuppressive treatment. Please encourage your former wife to contact Alexion through the Onesource Treatment program they offer. She can get a lot of helpful free info about PNH and all the options by calling them at 888-765-4747.
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Donna, age 44, diagnosed AA 9/30/10; treated h-ATG 10/3/10 and cyclosporine to 2012; Oct 2012 Duodenal cancer/Whipple procedure; 7/29/13 diagnosed PNH; July 2014 stable but very low HgB & Platelets(25-35)-Cyclosporine; Prednisone and bi-weekly soliris infusions
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Old Thu Aug 22, 2013, 11:23 PM
TonyBegg TonyBegg is offline
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thanks

Just wanted to give an update. The local hospital has taken Karin on as a charity case so we could do Soliris (Eculizumab - we are calling it E-mab :-)) and that may happen. It does not seem to address the marrow failure though when I read the papers. We are trying Papaya Leaf extract for the thrombocytopenia - just been on it 10 days but last hematologist visit the count was 17000 platelets - same as the previous week's count and the hematologist asked whether we had started the Papaya Leaf extract. Well whether it holds up or not we were able to skip a platelet transfusion. Her LDH is 630, her neutrophils are 0.75 x 10^9 / Liter, marrow cellularity is normal, her PNH clone size is 39%, so seems to be moderate AA/PNH. I have seen a couple of case studies where the PNH clone was reduced considerably after treatment for other things with Rituximab (R-mab), one for AA/PNH and the other for non-Hodgkin's lymphoma/PNH so am looking into that as a treatment.
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  #7  
Old Sat May 10, 2014, 01:22 AM
ussoccer004 ussoccer004 is offline
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Quote:
Originally Posted by TonyBegg View Post
Just wanted to give an update. The local hospital has taken Karin on as a charity case so we could do Soliris (Eculizumab - we are calling it E-mab :-)) and that may happen. It does not seem to address the marrow failure though when I read the papers. We are trying Papaya Leaf extract for the thrombocytopenia - just been on it 10 days but last hematologist visit the count was 17000 platelets - same as the previous week's count and the hematologist asked whether we had started the Papaya Leaf extract. Well whether it holds up or not we were able to skip a platelet transfusion. Her LDH is 630, her neutrophils are 0.75 x 10^9 / Liter, marrow cellularity is normal, her PNH clone size is 39%, so seems to be moderate AA/PNH. I have seen a couple of case studies where the PNH clone was reduced considerably after treatment for other things with Rituximab (R-mab), one for AA/PNH and the other for non-Hodgkin's lymphoma/PNH so am looking into that as a treatment.
Hi Tony, did you ever look further into rituximab? Curious because I too am going to present it to my hematologist to try out. I don't have much to lose. I really don't care about the side effects as long as I can either see if it works or not. I heard even low dose can do the trick with some patients.
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Old Thu Feb 7, 2019, 03:37 PM
CELESTE MEDINA CELESTE MEDINA is offline
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Papaya

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.
https://www.hpne.org/portal1/images/...a-Nocturan.pdf



Quote:
Originally Posted by TonyBegg View Post
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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  #9  
Old Fri Feb 8, 2019, 02:22 AM
jamesramilo jamesramilo is offline
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Quote:
Originally Posted by CELESTE MEDINA View Post
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.
https://www.hpne.org/portal1/images/...a-Nocturan.pdf

Hi is this the papaya leaf extract?
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