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I Have Polycythemia Vera

A Polycythemia Vera anonymous support group with information on diagnosis, treatment, symptoms, along with personal stories and experiences with Polycythemia Vera. You're not alone. 211 People

    Diagnosed Today Pv - I was diagnosed today with PV. I go in Monday for a bone marrow biopsy, and CT of spleen. All of the JAK2 tests were negative. Ultimately, what I am concerned...
    nunnabiznes nunnabiznes 31-35 5 Responses Jan 18, 2013

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    One Day At A Time - Hello everyone, I was looking for a forum about this disease, so I could find a few more answers. I was diagnosed in 2007 with Polycythemia vera after...
    Avisace Avisace 36-40, F 1 Response Jul 22, 2013

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    I was finally diagnosed a year after my bone marrow biopsy and had my first phelp on 3/1
    kbarbaro kbarbaro 41-45, F 1 Response Mar 25

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    Following In Dads' Footsteps - Not until a couple of years ago did I find that my Dad died 26 years ago from polycythemia vera. Now I have the condition. Six years ago my blood...
    Farmland Farmland 70+ May 17, 2012

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    My name is Susie and I am 23 years old. In the middle of November 13. I went to the hospital because I had so much liquid on my stomach that it looked like I was 9 months pregnant...
    suexzee90 suexzee90 22-25, F Feb 3

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    I WAS DIAGNOSED WITH PV JUST 2 WEEKS AGO. I'M STILL CONFUSED AS TO WHAT IT REALLY IS. DR SAYS IT'S CANCER AND THERE IS NO CURE BUT THAT I WILL DIE WITH IT NO FROM IT. I WAS PUT...
    rjsgrama rjsgrama 56-60, F 1 Response 2 days ago

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    I was diagnosed with Polycythemia Vera nearly 5 years ago. I am 59. I have phlebotomies every 3 months and take Hydrea 500 mg 2 x day. I struggle mostly with the fatigue. I was...
    Newmandj Newmandj 56-60, F 22 hrs ago

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    I was told by my hemo doctor that I have Polycythemia Vera - secondary. Basically, there is a secondary cause to me having this disease. My Hemo doctor says they feel it is...
    trr2014 trr2014 41-45, M 1 Response Mar 16

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    I Am A 42 Yr Old Female Newly Diagnosed With Pv - I am a 42 year old female recently diagnosed with PV. I live in the greater Boston area, fortunately I have access to some of the...
    Jojoyoga Jojoyoga 41-45, F 13 Responses Jun 12, 2010

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    Any advice when dealing with Symptoms of PV - I'm a 46 year old male who is going through a long and tough divorce and has a stressful job. In Nov. 2010 while trying to jog with my...
    steelville65 steelville65 46-50, M 1 Response Jan 21, 2012

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    Find Support With Pv - Hello , I am Steven Taylor and I have PV  ( Polycythemia Vera )  I have started a page on facebook where several of us go to support , help and learn more...
    staylor57 staylor57 51-55 2 Responses Sep 2, 2011

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    Had No Idea - I took a blood test in preparation for a knee replacement. My blood count was over a million. I had no idea that I was sick as I felt fine. That is how my journey...
    cappyw cappyw 70+, F Jul 9, 2013

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    HEART Related Polycythemia Vera - i had minor heart problem until  one day i started to sweat . The sweating was so unusual I went to my doctor. She did several blood test...
    nooner nooner 56-60 1 Response Aug 12, 2009

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    DO YOU GO TO WORK WITH PV???????? ELECTRICIAN FOR 28 YEARS.. - IS    THIS MEDICAL DISABILTY
    ELECTRICAIN ELECTRICAIN 51-55 Sep 14, 2013

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    27F just diagnosed, it all started with seizures 3 months ago, I was about to go to bed and my hands went tingly, then my arms, and my breathing become shallow, I had terrible...
    brandedangel brandedangel 26-30, F 2 Responses Mar 21

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    Polycythemia Vera - Support Groups Available - I see a lot of incorrect information about PV on this site. Many doctors do not understand this Cancer. I belong to two online MPD...
    Daves1997 Daves1997 56-60, M 9 Responses Oct 13, 2009

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    My name is Jason and I have polycythemia Overa. It started out with my harmones when I was 25. I couldn't stay awake I was always tired. I went to my MD and he said I had low T. I...
    JasonPatton JasonPatton 31-35, M 2 Responses Jan 25

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    Polycythemia Vera Is A Long Road That Never Ends - My wife has been very sick with this bone marrow cancer since early 2006.I could write a book with a thousand pages about the...
    dobb dobb 51-55 20 Responses Jan 13, 2011

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    My New Normal - I was diagnosed with pv in May after a visit to the doctor because I wasn't feeling well.They did blood work and my platelets were 800,000 at the time. My doctor...
    pipefitterchad pipefitterchad 51-55 Aug 20, 2013

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    Has Any Of You Experienced This??! - Hello, I've got a question: Has any of you (males) experienced "retrograde e-jaculation", (retroejaculation), after being on one or more of the...
    Sambi777 Sambi777 31-35, M Feb 21, 2013

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    Just Diagnosed With Pv On Friday May 13 And I Am Only 38 - I was just diagnosed on Friday and I am devistated. I don't understand why or how I got this? I had no symptoms and I am...
    Adahl38 Adahl38 36-40 7 Responses May 14, 2011

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    I Have Polycythemia Vera & Budd Chiari, Age 27. - Hi. I will be 27 years old in August 2012. My "journey" began back in November 2011. I was experiencing some odd symptoms...
    marlan1 marlan1 26-30 2 Responses Apr 27, 2012

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    Itching Remedies? - I have had PV for 4 years and have phlebotomies every 1-3 months. The only really bad side affect is ithching which occurs every day. It drags on my energy...
    Ecom Ecom 51-55, M 2 Responses Jul 29, 2012

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    Polycythemia Vera - I have had this disorder for 3 years and I am on 400 mg of Hydra per day and am being monitored bi-weekly with CBC taken by my doctor. Fatigue is one of the...
    Fraiche Fraiche 70+, M 2 Responses Jan 21, 2013

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    Hello my name is Maria and I am 57 years old and was diagnosed with Polycythemia Vera about 6 months ago. I am looking for people that has my same desease to learn more about the...
    mperez55 mperez55 56-60 3 Responses Jan 4

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    I Have Polycythemia Vera - I was diagnosed with PV in 2007.  My doctor started me with phlebotomies to control red blood cells. Eventually the phlebotomies led to my platelets...
    curlybella curlybella 51-55, F 4 Responses May 21, 2010

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    How My Life Changed... - I was diagnosed with PV in December 2010 and I was 28 years old. It started in September/October. I noticed that I was starting to gain weight in my...
    sarahminton82 sarahminton82 26-30, F 5 Responses Jul 29, 2011

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    Oh Well, It Is What It Is... - I was diagnosed with p-vera 2yrs ago. My journey started with fainting spells. Unknowingly, my blood was so thick that it would cause 3 - 5 second...
    lheben lheben 51-55, M 1 Response Oct 17, 2013

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    Hello - Hello, my name is Theresa... I live in Burien, Washington... was diagnosed with PV 12-2010.   My treatment so far has been phlebs and baby aspirin.  When I was 26, I was...
    jenjayjor jenjayjor 46-50 2 Responses May 18, 2011

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    Just Need To Talk - I am 58 and have polycythemia vera, copd, sleep apnea and hypothyroidism. I am tired all the time and my joints swell and hurt most of the time, is there anyone...
    GabbyJo GabbyJo 56-60, F 1 Response Jan 18, 2013

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    A Long Road With Lots Of Twists And Turns - At 30+ I had a routine physical about 25 years ago. My general physician said at the time that if I am asymptomatic, which I was, they...
    cak1124 cak1124 51-55 Nov 5, 2013

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    Polycythemia Vera - I was just woundering if there are any veterans who have this disease?
    tami2 tami2 41-45 1 Response Jun 5, 2013

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    22 Year Old Female - I was diagnosed with Polycythemia Vera 2 years ago. It was noticed on a routine blood test. The only thing I have realized was a symptom since I have began...
    rossrikki rossrikki 22-25, F 4 Responses Apr 10, 2013

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    Help: The Dreaded Blue Fingernails Hydroxyurea Side-effect! - Hello everyone, Has any of you suffered from the blue fingernails side effect of HydroxyUrea? Does it go away on its...
    Sambi777 Sambi777 31-35, M 1 Response Feb 21, 2013

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    I was diagnose with polycythemia vera last 2010 but before the doctors found out that I have the disease I already suffered a lot of pain and agony, I was 43 years old at that...
    edcachero edcachero 46-50, M Mar 27

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    My 8 Year Old Has Polycythemia. - My symptomless, picture of health daughter has been diagnosed with Polycythemia after 2 years of v monitoring her rbc.
    kbare80 kbare80 31-35, F Aug 8, 2013

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    Pv And Thrombothycemia - hi i was diagnosed with pv and thrombothycemia last year, i dont no anyone else who has this and would like to chat to others who have been through it. I...
    sue196940 sue196940 41-45 2 Responses Aug 7, 2010

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    Angelinas Story - OK MY STORY GO'S AS FOLLOWS I'M A 33 YR OLD CHRISTIAN WOMEN,  I WAS DIAGNOISED WITH PV ON JULY24TH 09.  AT THAT POINT MY BLOOD COUNTS WERE 59.8 I WENT...
    jorlinna jorlinna 34, F 2 Responses Feb 7, 2010

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    I Have Pv - Hello I was diagnosed back in 1993 at the age of 39 due to just a routine blood test my full blood count then was 20.5 when it should have been between 11 and 14 I was...
    jennie1954 jennie1954 56-60, F 3 Responses Oct 17, 2012

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    Confussed - hello i maybe have polycythemia vera my red blood count was 19.8 and very low epo i have had 3 phebos and it has dropped to 17.0 i am seeing a hemo/oncon. and he did a...
    polylou polylou 46-50, M 1 Response Mar 24, 2013

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    "polycythemia Vera Is A Long Road That Never Ends " 2 - It has been a long time since i have posted ,well over a year.So much has happened and i have been so busy in my...
    dobb dobb 51-55 1 Response May 5, 2012

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    I Have Polycythemia - About a year ago I was told I had polycythemia and would like to discuss with others that have it what they have gone through so far. 
    amatobarbara amatobarbara 61-65 1 Response Oct 15, 2010

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    Not Sure Whats Wrong - Hi everyone I am a 44 year old Mother living in the UK with 3 teenagers and I work fulltime. I have put my excessive tiredness down to the stress of...
    Jenny2002 Jenny2002 41-45, F 1 Response Jun 10, 2013

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    I Pvhave Been Newly Diagnosed With - I have Polycythemia Vera. I was diagnosed with high platelets in January 2008. In October 2009 I saw my hemotologist for the first time. He ran...
    maky59 maky59 46-50 8 Responses Mar 11, 2009

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    PV And Me - I was diagnosed in 2002 at only 41. I spent two years doing phlebs. The my platelets were too high and I started on Hydrea. A couple of years ago I started...
    Dnwatson Dnwatson 51-55 1 Response Jul 19, 2013

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    The Long Road To Pv - I was diagnosed in March 2010 after almost two years of weird symptoms including, visual probs, burning in toes, red complexion, headaches, tinnitus...
    LylaJane LylaJane 41-45, F 4 Responses Nov 11, 2010

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    A New Way Of Living With A New Found Disease. Still Ain't Figured It Out. So Many Questions. - I am a veteran who was diagnosed 5 months ago. I am 39 and it took 3 DVT's and 2...
    wdwjr wdwjr 36-40 Aug 18, 2013

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    Struggling With PV - I live in appleton, WI..  I am 59 yrs. old.  I have had polycythemia vera for 6 yrs.  I had not felt good for years before but no one checked my blood any...
    krigs krigs 56-60, F 18 Responses Jan 30, 2011

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    Undiagnosed - I haven't been diagnosed yet but my doctor is useless so I thought I'd look up my symptoms and blood test results and they seem to point towards PV. My haemoglobin...
    3 Responses Jan 13, 2013

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    My Story - Seven years ago i was diagnosed to have PV. i am on maintenance (hydrea) for it and for my bp (losartan and karvil). just last week, i was hospitalized because my...
    RonaldGuy RonaldGuy 41, M 4 Responses Apr 23, 2010

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    I Have Polycythemia Vera - for about 2 and half years when i got in water i would itch so bad.I told my doctor about this problem.But i was never helped .I started looking on the...
    brandy23 brandy23 56-60, F 9 Responses Oct 11, 2009

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