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Old 05-10-2012, 07:06 PM
Mariel Mariel is offline
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Join Date: Dec 2006
Posts: 724
15 yr Member
Mariel Mariel is offline
Member
 
Join Date: Dec 2006
Posts: 724
15 yr Member
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I don't know what an IPIR is. Apparently something that causes you to pass out or almost pass out?
It seems you have tried enough, but I'm prejudiced against these drugs. I wish I could take LDN (have you thought of it?) but having Porphyria probably means no go on LDN.
I may give up taking p32 again for my other disease, Polycythemia Vera. It worked beautifully to lower my platelets, but they are now starting to increase, after about two months. That means another shot would be required in four months. It costs me about
$2300 in co-pays, air fair to mayo and motel, and if I do it twice a year it would be around $4600. And it has a small risk of leukemia. The doc at Mayo says that at my age, better to have 3 years of less pain and then die of leukemia than do without p32.
So I too may be giving up all drugs that are DMD, whatever that means. All drugs intended to help a disease process. I will continue with phlebotomies every 6 weeks for the red cells, plus l/4 aspirin a day rubbed into skin in cream.
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