|
Hubby with PRCA - sort of :)
Hi there, my husband has PRCA (5 years now) and originally they thought he had CLL as well. The CLL has not shown itself now since that first year of his illness. We go to see Dr. M now too and highly recommend it. He has the most up-to-date and OPTIONS! While my husbands condition remains the same (he transfuses every other week), we've been trying alternative treatments to see what might work. Our challenge is that he has Red Cell Aplasia, but not necessarily all the markings for 'Pure'.
We now joke that of the rare, he really is unique  wish it had been the lotto instead!
Let me know if you have any questions - we've been dealing with frequent transfusions and travel to Cleveland now for awhile. Our local dr. is great, he actually did his residency in Cleveland with Dr. M (what great luck to find him here in FL, in our town!!!). We've tried a host of treatments, right now after this year's visit 3 different, fairly non-invasive drugs. Then we might be doing ATG next year. So we still have a journey ahead of us!
__________________
Renee, wife of Brian age 44; dx Prca 2009 & possibly CLL, w/iron overload; treated with prednisone, cyclosporine, rituxan/cytoxan, Exjade & Desferal; spleen removed ‘10; currently transfusion dependant w/iron overload; on Exjade & pending next step in treatment. Patient at Mayo Clinic, Jax, FL.
|