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I have not needed a transfusion for three years. I only know five other people with PRCA. Transfusions every two weeks is common because the red cells "die" normally in everyone. They just aren't being replaced in PRCA. PRCA only affects red cells. That is what caught my attention in your case. All of these counts fluctuate normally and are affected by many factors and "lab error".
My bones do not hurt, but when I was researching earlier this evening I found some references to pain when moving for DBA patients. I tried finding it again but could not.
Please note: I really only know what I have found on the internet. I also know there are at least a couple of other genetic diseases affecting blood.
I did find several doctors with a special interest in DBA, but none were in Colorado.
At least you have some questions to ask your doctors in Denver. Some of these things are so rare, they can go a whole career without seeing an actual case. That is something I know from first hand experience.
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Dallas, Texas - Age 81 - Pure Red Cell Aplasia began March 2005 - Tried IVIG - Then cyclosporine and prednisone. Then Danazol, was added. Then only Danazol . HG reached 16.3 March 2015. Taken off all meds. Facebook PRCA group https://www.facebook.com/groups/PureRedCellAplasia/
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