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Old Wed Jan 13, 2021, 10:31 AM
John T John T is offline
Join Date: Jan 2018
Location: North Texas
Posts: 11
Originally Posted by quantpsyc View Post
Hey John,
My husband Ed tried Jakafi for his gvhd after the spine specialist said he had to get off the prednisone, three compression fractures in vertebrae!! He is prednisone dependent, every time he gets below 15mg his gvhd flares.
He has been struggling with low platelets for about a year so has been on promacta....had finally gotten over 50k platelets when they put him on the Jakafi, his platelets tanked and bleeding started. They tried lowering the dose with no improvement then took him off. He won't go back on. He is going to try ECP if medicare will approve it.

His doctor at Duke wont let him get the vaccine until they see "lots more data". Not so concerned about transplant status but am concerned about the gvhd...seems anything new or different makes it flare. So we will keep hunkering down a while longer. Sure am looking forward to the end of this pandemic!!
All stay safe, stay sanitary and stay well!!
Hopefully the ECP will work for him.
My Oncology team is taking the same approach with the Covid vaccine. I told them to sign me up as in my opinion the vaccine could not be as risky
as contracting the disease.

Has Ed been tested for engraftment percentage? I had low platelet counts early after transplant. My engraftment at that time was 90%. Since after lowering my immunosuppressive drugs it has gone to 100% and the GVHD flared in kidneys, lungs, pancreas, an eyes. Thats how I ended up on Jakafi which so far has worked well for me.

Platelet counts are 312. RBC 3.63 and HGB 12.6 are still a little low.
MDS RAEB-1 since early 2017
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