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ITP specialist in DC metro area

  • richellefleischer
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  • Diagnosed in November 2022
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2 years 10 months ago #72819 by richellefleischer
ITP specialist in DC metro area was created by richellefleischer
Any recommendations on a ITP specialist in the DC metro area?

 Thank you!

SRM Texas
  • midwest6708
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  • ~ Janet ~ Diagnosed Sept. 2008
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2 years 9 months ago - 2 years 9 months ago #72823 by midwest6708
Replied by midwest6708 on topic ITP specialist in DC metro area
Most doctors who treat ITP are oncologists/hematologists.  I live in a major city with several large teaching university hospitals and found only one MD who practices with an ITP focus.  I found him by scouring those hospital websites to find the bios of each doctor in their systems.  I saw the only one who focuses on ITP and ultimately decided to stay with my original MD.  The ITP specialist was promoting outdated methods and insisted on a treatment I had no intention of doing.  My own MD is open-minded, listens respectfully, and treats according to what I'm comfortable with.
So just understand, that even if you find an ITP MD, it still might not get you the kind of care that's best for you.  

How are you doing?  Any improvement yet?
  • richellefleischer
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  • Diagnosed in November 2022
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2 years 9 months ago #72828 by richellefleischer
Replied by richellefleischer on topic ITP specialist in DC metro area
Still in hospital. After 5 days of platelets of 1 and daily platelet transfusions, platelets up to 6…waiting for Nplate to kick in (it worked first time). Learning patience…

I don’t feel bad, mouth sores are better, so just waiting. Go walking around hospital daily which helps kill time. 

Thank you for checking on me!

SRM Texas
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2 years 9 months ago #72829 by MelA
Replied by MelA on topic ITP specialist in DC metro area
This was many years ago - but when I saw the specialist at the university hospital here he told me I "would have a splenectomy".   That was at least 30 years ago and I still have my spleen.   

I'm so sorry your are still in the hospital and your count so low!!   I know nothing about Nplate or any of the new treatments - how long does it take for Nplate to kick in if it is going to work??

My understanding is that platelet transfusions don't work because as soon as those platelets enter the body they are tagged with the antibody and the blood cleaning areas in the body then "see" that and destroy them.

I've had a few hematologists over the years - my new one is fantastic, he loves blood and knows a lot about ITP.  

I sure hope you get some good news and soon!!

"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD