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Old Sat Nov 5, 2011, 07:58 PM
Mike LeVart Mike LeVart is offline
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Join Date: Oct 2011
Location: United States
Posts: 3
Soliris

Lee,
I am sorry to hear about your diagnosis. Lee My name is Mike and I was diagnosed with A plastic anemia when I was 15 and there was no A plastic anemia research facility. I was given 6mths at best. A drug that does not work for most aa patients worked for me. I take 200mg of Anadrol per day just to keep my platelets and white cell counts up to a safer level. I just turned 40 in August. I was diagnosed with PNH in 2007 however I believe from looking back that I was not diagnosed until very late in the progression of the disorder. What I am trying to say also is listen to the specialist in the field of PNH. Even my Oncologist who specializes in aplastic has limited knowledge of the current treatments for this disorder. Not only that, some doctors still aren't sure about the success of Soliris and will not suggest it. They obviously aren't the ones dying though are they. Since I started Soliris in January, I have been a new man. I have more energy than I know what to do with. No blood transfusions since and my LDH counts have gotten as low as 220. Before they had gotten as high as 865+. Make sure and have your doctor check your hormone levels becuase if they are very low you can qualify for some great meds that help produce testosterone which also really stimulates Oxygenated red blood cell growth. Please let me know if I can help in any way. Good luck in the future
Mike
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