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Old Wed Jan 13, 2021, 02:42 AM
quantpsyc quantpsyc is offline
Join Date: May 2017
Location: Leland, NC
Posts: 24
Jakafi and covid

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!!
Kathleen, adoring wife of Ed 67 yo, Dx April 2017 MDS RAEB2, no chromosomal mutations, as of August 2017 only supplement therapy, living and loving each day.
October 2018 started Decitabine, "exceptional response", MUD HSCT May 7, 2019.
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