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Bone Marrow Failure Causes, treatment approaches, terminology, related diseases

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  #1  
Old Wed May 9, 2018, 04:20 PM
dgibbygirl dgibbygirl is offline
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Join Date: May 2018
Location: Edmonton, Alberta Canada
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Smile PRCA onset after Chemo for Multiple Sclerosis

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
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  #2  
Old Sat Jun 9, 2018, 12:59 PM
Hopeful Hopeful is offline
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Join Date: Jan 2009
Location: California, USA
Posts: 679
Hi dgibbygirl,

I remember viewing a very interesting presentation on PRCA on the AAMDSIF website. The presenter is from the Cleveland Clinic:

https://www.pathlms.com/aamdsif/cour...ntations/37706

Hopefully it can give you some new or confirming insights.

P.S. I am not a Canadian but have considered moving there
__________________
50 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. Tried slow cyclosporine taper over 4+ years. Platelets fell, so back on cyclosporine. Trisomy 6 clone in 5% of cells.
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  #3  
Old Mon Jun 11, 2018, 04:42 PM
triumphe64 triumphe64 is offline
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Join Date: Feb 2008
Location: Dallas, Texas
Posts: 438
dgibbygirl,

If you are on Facebook you can join our PRCA group.
The address is part of my "signature"
We have a couple of members from Alberta.
__________________
Dallas, Texas - Age 76 - 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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