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Polycythemia Vera and Secondary Polycythemia

Hi, I'm bridgetteg

I don’t see any resources for Polycythemia. I have my first appointment scheduled for Feb 18th. I was able to find a lot of information on Polycythemia Vera, but not a lot on secondary. Does anyone have any information and/or has anyone here been through either of these. Looking for support. Many thanks in advance.

  • Post #1
  • Sun Feb 10, 2019
Hi, I'm KAREN E J.

I have secondary polycythemia. What would you like to know?

  • Post #2
  • Mon Feb 11, 2019
Hi, I'm bridgetteg

Thanks for your reply. I am wondering how long it takes (approx) for the doctors to find the cause and then how long until you start feeling better. I am tired all the time and want my life back. Although I am not sure this is the cause. Looking for answers. Perhaps a bit impatient.

  • Post #3
  • Mon Feb 11, 2019
Hi, I'm Elliott M S.

there is a very active Facebook page that you might benefit from, I know I have. https://www.facebook.com/groups/180180118669211/ This is the Polycythemia support group

  • Post #4
  • about 5 hours ago
Hi, I'm Nancy L D.

I have Essential Thrombocythemia ……are there any support groups or discussions regarding this? Thank you, Nancy

  • Post #5
  • about 3 hours ago
Hi, I'm Sharon L P.

I have Essential Thrombocythemia also and would like to know about support groups or discussions. Thanks, Sherrie

  • Post #6
  • about 3 hours ago

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