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Old Sun Jan 17, 2021, 12:30 PM
John T John T is offline
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Join Date: Jan 2018
Location: North Texas
Posts: 14
Quote:
Originally Posted by quantpsyc View Post
John your numbers look great., no worries on your end for platelets. And Jakafi seems to agree with you!! I think Ed's issue was that with already low platelets, the expected bump down on the Jakafa was critical for him.
He has been at 100% donor for over a year (bmt May 2019) His platelets recovered to normal levels before dropping precipitously. Maybe ITP, maybe GVHD. Maybe some of the cocktail of meds he is on. They admit they just don't know but the Dx on record is ITP.
Ironically he now has been diagnosed with a blood clot in the leg. They say his body is overcome pensating to the low platelets by trying to clot faster. BC of the low platelets they can't put him on blood thinners, so this afternoon he gets an IVC filter put in to avoid movement of the clot to the lungs.
I am also on an insulin pump and when platelet levels were low I would get bleeding at the infusion site. My transplant team was highly concerned about the comorbidity of diabetes.
Cloting with low counts seems like a rare occurrence but then only 1 in 100,000 get MDS. I was concerned about this due to my in and out of the hospital over the past 2 years and the inability to move around much there.

I have looked but I can't find any reference to ECP on the interwebs?

Drugs.com has nothing unless I am missing something.
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