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Old Sun Jan 17, 2016, 03:44 AM
DanL DanL is offline
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Join Date: Dec 2010
Location: Denver, CO
Posts: 590
Maura,

I lived with low platelets from 2010 through 2015- platelets only normalized about 3 months ago even after transplant. From my experience, low platelets doesn't have much correlation to low energy. by low platelets, prior to transplant in February 2014, my platelets hovered between 20k and 31k, never higher, never lower - that we measured anyway - and I was tested weekly.

At the end of 2015, we changed some medications and my platelets rose and I am now well above 200k - a nice relief for me.

As for transfusions and transfusion reactions - I personally have done better with dexamethasone as compared to prednisone in terms of side effects. Platelet transfusions can be funny. Has the doctor tried 1) blood type matched platelets and/or 2) HLA typed and matched platelets?

The first one helps some patients, the 2nd helps most everybody both in terms of how long the platelets hold, and how well the patient receives them.

good luck to you and your mother!
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MDS RCMD w/grade 2-3 fibrosis. Allo-MUD Feb 26, 2014. Relapsed August 2014. Free and clear of MDS since November 2014 after treatment with Vidaza and Rituxan. Experiencing autoimmune attack on CNS thought to be GVHD, some gut, skin and ocular cGVHD. Neuropathy over 80% of body.
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