Home         Forums  

Go Back   Marrowforums > Bone Marrow Failure Diseases > Bone Marrow Failure
Register FAQ Search Today's Posts Mark Forums Read

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

Thread Tools Search this Thread
Old Wed May 9, 2018, 05:20 PM
dgibbygirl dgibbygirl is offline
Join Date: May 2018
Location: Edmonton, Alberta Canada
Posts: 1
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

Reply With Quote
Old Sat Jun 9, 2018, 01:59 PM
Hopeful Hopeful is offline
Join Date: Jan 2009
Location: California, USA
Posts: 689
Hi dgibbygirl,

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


Hopefully it can give you some new or confirming insights.

P.S. I am not a Canadian but have considered moving there
52 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.
Reply With Quote
Old Mon Jun 11, 2018, 05:42 PM
triumphe64 triumphe64 is offline
Join Date: Feb 2008
Location: Dallas, Texas
Posts: 439

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/
Reply With Quote

Thread Tools Search this Thread
Search this Thread:

Advanced Search

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

vB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Forum Jump

Similar Threads
Thread Thread Starter Forum Replies Last Post
To (continue) chemo or not chemo - that is the question! Quester Questions and Answers 12 Mon Oct 5, 2015 09:45 PM
Chemo drug used for AA (without BMT) Lucky AA 7 Fri Aug 9, 2013 02:04 AM
New Member - Wife of PRCA patient, Florida Reneesctmiller Tell Your Story 22 Fri Jan 4, 2013 11:00 AM
MDS from Chemo... No avaliable treatment?!? Jer MDS 2 Mon Jul 30, 2012 10:24 PM

All times are GMT -4. The time now is 05:44 AM.

Powered by vBulletin® Version 3.6.7
Copyright ©2000 - 2018, Jelsoft Enterprises Ltd.
Forum sites may contain non-authoritative and unverified information.
Medical decisions should be made in consultation with qualified medical professionals.
Site contents exclusive of member posts Copyright 2006-2018 Marrowforums.org