Debbie,
Think of it as being part of a very select club. Doctors will tell you PRCA is "not very common." That means they have never actually seen anyone with it. The good news is that it is much better to have than the other conditions discussed on these boards. The bad news is that few doctors are experienced in the subtleties and variations or fully up to date on the latest treatments. It took me three years to find a good doctor, and when that happened I knew that everything would be OK. I now have two doctors that I see, and my Hg has been at the bottom end of the normal range for six months now.
My doctor here in Dallas has seen a dozen or so cases over her long career, I figure that is one every three years. I am currently her only PRCA patient, but I am well connected to a key person at the local medical school and he hand selected her for me. I also go to Dr. Maciejewski at The Cleveland Clinic. He is a researcher with a special interest in PRCA. At last count, he had seen 26 PRCA patients.
It would be a good idea to call Leigh Clark, the Patient Educator at AA&MDSIF. Call (800) 747-2820 press option 1 or email
help@aamds.org. I'm sure she can guide you to a good doctor in your area.
A thymoma can cause PRCA, but the treatment is to remove the thymus. I am not aware of a delay in causing PRCA after it is removed. Why are you considering seeing a rheumatologist?
Getting the meds adjusted to the proper levels is frustrating. That is one reason you want an experienced doctor. There are trade offs from the rise in red cells versus the side effects and interactions of any meds you take.