Hi All! Brand new, (and grateful to have found), this forum.
I am a 38 yo F in Edmonton, Alberta Canada. I am 4 transfusions in already in the past month and a half. Last transfusion lasted me 8 days. After a sudden crash from 8.7 to 6.6 we now are automatically transfusing 2 units every time I hit 8.0. Bone marrow biopsy is scheduled for May 22. so I am waiting on the final diagnosis, of Pure Red cell Aplasia. I understand we are a sort of "unicorn" in the blood world.
I also have aggressive Multiple sclerosis, and have been treated 3 years in a row with the drug Lemtrada which is also known as Alemtuzumab. You may recognize it as (ironically), one of the drugs they like to use to treat PRCA. The hemo, the neuro and I are on the hunt for all the info that we can find, and hopefully somebody else who has both conditions. This is like walking on a tightrope trying to keep the MS from flaring up, and keep me, y'know, alive.
We did find one lady in Montreal QC (Canada) who had both, unfortunately, she also has died as a result of the antibody load she had from the drugs that caused it (she was also on a 'zumab' drug). They have filed the paperwork to advise of "serious effects", but we are having trouble finding info on this condition.
Ideally I would love to find another MS/PRCA friend, but any and all info anyone can share would be great.
The system we have going:
Bloodwork is done twice weekly
Transfusing automatically at 8.0
Hemo has seen or heard 3 other PRCA patients in his career and seems to be very knowledgeable
One of our main concerns is starting me on prednisone. As an MS patient, that is the drug of choice for a flare up. The difference is, "high dose" means something very different to me. The "high dose" that they want to give to treat the prca is 60 mg a day. An MS flare dose is 1000mg (1 Gram) daily. To date, in the last 4 years I have had over 55000 mg of prednisone....
I'm rambling at this point, but if anyone has information they can share, I would appreciate it. Bonus points if it is Canadian
Thanks