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5 months after ATG and no improvement
This from Karin (PNH since 1990, severe AA since July 2013) this morning when I suggested we seek encouragement on the Marrow Forums:
"Yes. I am taking between 375 and 400 mg of CsA, and just went up to 75 mg of eltrombopag.
Horse ATG last week of May - discharged the 1st of June.
Counts: wbc: 1.14
rbc: 3.09
hgb: 8.9
plts: 9
neut: .27
retic: .88
These are just before the last round of transfusions.
Also taking the eculizumab every two weeks since the middle of May.
Thank You. I will be interested in what you find out."
Karin is so far showing no improvement (though she seems stronger than just after the treatment) and is still transfusion dependent. We are hoping that others on the forum can say things like "it took more than 5 months for my counts to start improving but then ...". Thanks. We have a visit to the hematologist that oversaw the ATG soon and we want to be armed to fend off their suggesting a BMT if there is yet hope.
Best Wishes Tony and Karin
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