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Old 01-30-2011, 07:58 PM   #1
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Join Date: Jan 2011
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Memy HB User
Question Polycythemia Vera

Hello folks,
Obviously I am a newbie here, Memy, 60 y/o, dx'd with Polycythemia Vera in '02 at the age of 52, but had symptoms of the disease for several yrs prior to dx even though I was seeking medical care for the symptoms for 3 yrs prior to dx. Fast forward to now, and I am doing well. I have been in treatment since '02. I was treated with phlebotomy only for first 6 years, then due to the veins in my arms breaking down from all the many huge---garden hose-sized---needle jabs, it became counter productive to remain with phleb-only treatment and in '06 I was placed on 500 mgs Hydrea (Hydroxyurea) daily and have responded well to this treatment. I feel blessed that there is such a drug available to me with minimal side effects, relatively inexpensive (or at least affordable to me) and that helps keeps my blood close to the normal range. BUT, I do have a problem with high platelets ---950 range, and no matter what treatment I am receiving, my plts will not come down. Does anyone have this problem? Are there any other folks on this health board with the dx of Polycythemia Vera?
As I am new to this site, I am having a bit of a problem learning how to navigate through the different threads and so forth.
There are other things about PV which I would like feed back from and so forth or to compare notes with another, so if anyone is interested or has PV, I would appreciate any thing you might like to add or ask me things related to PV........ I am a member of the LLS and do volunteer services for them which is quite rewarding for me. My apologies if I have made a rather redundant new thread--I am still learning the way around!
Thanks, Memy from the Deep South!

Last edited by Memy; 01-31-2011 at 07:26 AM. Reason: typos

 
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Old 02-03-2011, 04:52 PM   #2
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JohnR41 HB UserJohnR41 HB UserJohnR41 HB UserJohnR41 HB UserJohnR41 HB UserJohnR41 HB UserJohnR41 HB UserJohnR41 HB UserJohnR41 HB UserJohnR41 HB UserJohnR41 HB User
Re: Polycythemia Vera

Hi, Memy,

Welcome to the health boards. You asked if anyone is interested. Yes, I'm interested in everything. For example, what were the first symptoms you had? And what kind of treatments were you getting before diagnosis? Was there a specific test you needed to get the diagnosis? And why did it take so long to get a proper diagnosis? Is this a rare form of cancer? Is there any hope for a complete cure, or is this something that you must keep fighting to keep from getting worse?

Thanks.

Last edited by JohnR41; 02-03-2011 at 04:57 PM. Reason: punctuation

 
Old 02-07-2011, 08:56 AM   #3
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Re: Polycythemia Vera

Found a good description of Polycythemia Vera by searching the following: Polycythemia Vera / Merck Manual.

It gives a rundown of symptoms, prognosis and treatment.

 
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hydrea, itching associated with pv, polycythemia vera



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