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Old Thu Jan 14, 2021, 05:08 AM
Meri T. Meri T. is offline
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Join Date: Aug 2016
Location: Tokyo, Japan
Posts: 165
Kathleen,
I hope medicare will approve ECP for your husband. I haven't tried it, but I do know tapering prednisolone is a very VERY slow process, especially when you get under 10 mgs, and of course gvhd will flare. Even now I've been off it for a year, gvhd still comes in various ways.
And as you say, anything can make it flare, I used a different soap and my skin started itching! I ate beef and my gums started hurting!?
What I do is I try to live a very regular life, no surprises to upset my fragile gvhd. Hope your husband stays well during this time.


John,
Your counts are quite good! Seems like Jakafi is working for you!
My platelets and red cells have always been a bit low. I haven't had a blood check in a while, my next appointment is April.
Let us know when you get the vaccine, and side effects if any.

Meri
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Female born 1965, diagnosed MDS RAEB1 in August 2016, watch and wait for 9 months. Sibling match - Stem cell transplant in June 2017. Some GVHD skin, liver, stomach, esophagus.
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