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Old Tue Oct 29, 2013, 05:25 PM
triumphe64 triumphe64 is offline
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Join Date: Feb 2008
Location: Dallas, Texas
Posts: 455
Neil really put me on the spot.

In spite of the downside of being poked by all the interns, a teaching hospital knows about the latest and greatest research. It took me three years to get where you are now as far as getting information.

I now go to a Dr. at UT Southwestern Medical School. It took me three and a half years to find her and mostly because I have some connections there. I am her only PRCA patient currently, but she has had others in the past. She is up on all the research and how to handle the meds; something I was lacking in my prior doctor.

I go to see Dr. Maciejewski at Cleveland Clinic twice a year. He has the most PRCA patients and does most of the current research. So he knows what works before things are published. Very little is actually published, so going to him helps people down the road. He is really great and friendly. He will even overwhelm you with his knowledge. He tends to think out loud and comes from many different directions at once.

All those weird tests they have been doing are because PRCA can be a symptom of various conditions as well as an autoimmune condition. It can also overlap other conditions.

When you call AAMDS, ask to talk to Leigh Clark. She can get some information to you and connect you to the PRCA patients in the peer support group. I think there are only two. I am one, and the other one is actually named Kate.

You can also send me a private message on this board and I think you can email through this board, too. If you just want to use this as your communication tool, that will work too and will help educate others at the same time. But I have found that phone conversations are much better and more efficient. Besides the other Kate, I have talked to three or four on the phone.

PRCA is most like Aplastic Anemia so reading about that will also help.

FYI, my Hg is now very normal and I hope to be just be using the Danazol in a couple of weeks. I'm actually hoping I am in remission, but that will take time to play out.
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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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