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Joe DX SAA 10/99 ATG/Cyclo/MMF Remission
 
S1
I was diagnosed with aplastic anemia 10/99 after several weeks of feeling extremely tired, throbbing all over, and becoming pale and then almost yellow. I was advised by my hemotologist of the work done at NIH on aplastic anemia. I met with Dr. Neil Young at NIH. He advised me that I should consider being treated in one of their trials before considering any bone marrow transplant.


My aa was severe and I was receiving transfusions for red blood and platelets. My family and I decided I would enter NIH and get randomized to either ATG/cyclosporin or Cytoxin/cyclosporin. I was admitted mid Nov. 99, and received ATG/cyclosporin. I spent about 10 extra days there due to a skin reaction and fever. They still don't know what caused the skin rash. I returned home to New Jersey in Dec. 99 and wound up in the hospital with a very serious case of pneumonia. They said it wasn't pneumocystis, but they treated me as if it was.
The good news is that after leaving the hospital in January 2000, things got slowly better. I had a problem with tolerating the cyclosporin. It was beginning to affect my kidneys. But NIH lowered the dosage and that problem was solved. By March of 2000, my platelets stabilized and I did not require any more platelet transfusions. By June of 2000, I did not need any more red blood cell transfusions. On my visit to NIH in May of 2000, they also put me on MMF.


Today, my bone marrow is working, twice as hard as normal. But I am only at around 10.5 to 11 hemoglobin, and about 55,000 platelets, due to having PNH cloning. I am tapering off of the cyclosporin and then the MMF. In November I will be back at NIH for my 2 year checkup.
I don't know what the future holds, but I thank the Lord that at least for now I am feeling better and appear to be in remission. I wish well to everyone who is struggling with aplastic anemia and look forward to hearing from anyone.

 
 


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