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Adults With ITP
Newly Diagnosed & Frequently Asked Questions
Am I alone for worrying about MDS?
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Am I alone for worrying about MDS? 10 months 3 weeks ago #72750

  • mcafiero
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  • ITP since March, 2009. Remission until Nov, 2022
  • Posts: 73
  • Thank you received: 4
Now that my ITP has relapsed, and this time around my platelets are not really bouncing back like they did the first time I was on prednisone 12 years ago (yes, I enjoyed a LONG remission), my dr is thinking we should start Promacta. I like the looks of efficacy on that.
But Promacta has this little disclaimer - not to be used for people with MDS. So I'm like, "what's that".  It's a precancerous disease that turns into Leukemia.
Has anyone here ever had to get extensive treatment to ruse out MDS? What were the factors? Was it not responding to Prednisone? Or something else?

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Am I alone for worrying about MDS? 10 months 3 weeks ago #72754

  • JJ
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  • Posts: 226
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The diagnosis of ITP is not made unless the platelets are the only low cell line. MDS can be seen on an ordinary blood test. You'd know by now if you had it. A bone marrow biopsy would be done to look further into the type of MDS but the blood test would show it first with low red cells.

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Adults With ITP
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Am I alone for worrying about MDS?
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