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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. 227 People

    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, dizziness, bleeding gums. After 3 or 4 fruitless neurology consults I ended up in the hospital with an enlarged spleen and some...
    LylaJane LylaJane 41-45, F 4 Responses Nov 11, 2010

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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 everyday life as most Mothers do. I suffer with migraines or just headaches, shortness of breath, had a chesty cough for the last...
    Jenny2002 Jenny2002 41-45, F 1 Response Jun 10, 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 treatment (phlebotomy) was headaches. I'm wondering how long other people have gone without experiencing symptoms...
    rossrikki rossrikki 22-25, F 5 Responses Apr 10, 2013

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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 black-outs every once in a while. One day, I had 3 black-outs and that caused Mr. Stubborn to see a doctor. After a routine exam and...
    lheben lheben 51-55, M 1 Response Oct 17, 2013

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    I was diagnoses in June of 2013

    after a 4" blood clot to my Spleen. Doctors said it was the only place that wouldn't kill me instantly and yet they wouldn't tell me if there was anyone else with a clot to the spleen. I had been mis-diagnosed with Hemochromatosis - too much iron for 3 years and was giving blood...
    DaveGrigg DaveGrigg 51-55, M May 17

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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 began treating the low T which I beleave became polycythemia Overa. Now I'm 33 ans stay sick more days than I feel well.
    JasonPatton JasonPatton 31-35, M 3 Responses Jan 25

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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 ON HYDRA, AND DO PHLIBOTOMIES EVERY 3 WEEKS. I PROGRESSIVELY GET MORE AND MORE WEEK AND TIRED EVERY DAY, THAT'S THE WORST. WHAT CAN I DO TO...
    rjsgrama rjsgrama 56-60, F 1 Response Apr 14

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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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    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 suffering a sudden stroke, which permanently blinded me in on eye. I was feeling great and being only 33, I had no clue I was...
    Avisace Avisace 36-40, F 1 Response Jul 22, 2013

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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 started two years ago. I take 2 adult aspirin each day along with hydroxyurea 500mg. The meds have greatly...
    cappyw cappyw 70+, F Jul 9, 2013

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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 started me on aspirin.They sent me to a hematologist who determined I had pv and started me on phlebotomies. My...
    pipefitterchad pipefitterchad 51-55 Aug 20, 2013

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    It Doesn't Have Me...

    I was experiencing arm pain in November of 2004.  Nevermind that I had been having awful fullness in my head every night when I'd lay down for bed and itchy itchy skin when I'd get out of the shower.  I kept putting those symptoms aside thinking it was just sinuses and...
    heddyb65 heddyb65 46-50 Aug 1, 2011

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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 further than the reg. phyisical blood work.  I've always been tired but not like this!  I had the itching and the sweats...
    krigs krigs 56-60, F 18 Responses Jan 30, 2011

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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 developing huge wounds on my ankles that I though were abrasions from shoes. They were hydra sores. I went off Hydrea...
    Dnwatson Dnwatson 51-55 2 Responses Jul 19, 2013

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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 related to sleep apnea. They referred me to a sleep specialist. Problem is the sleep specialists first visit isn't until June 12th...
    trr2014 trr2014 41-45, M 1 Response Mar 16

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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 platelet dropped and it alarmed my doctor. at the same time, i had several laboratory tests and it also showed that...
    RonaldGuy RonaldGuy 41, M 4 Responses Apr 23, 2010

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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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    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.  That is how  I found myself at the hematologist. I had several bloodletting. The sweating stop but extreme fatigue continued...
    nooner nooner 56-60 1 Response Aug 12, 2009

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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 best hospitals in the country. I was just diagnosed this week. I am being treated with phlebotomy at the moment. I am not quite sure yet just how...
    Jojoyoga Jojoyoga 41-45, F 13 Responses Jun 12, 2010

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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 pains in my lower stomach and ended up laying on the bed white as a sheet and barely breathing, then it faded away, the second time this...
    brandedangel brandedangel 26-30, F 2 Responses Mar 21

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    I have PV and I am having a very hard time with

    it. I also have seizures that my Nuro dr says my EEG had some abnormalities but he feels its stress that is causing my seizures. I am 33 yrs old and have been on and off anti depression meds sense I was in the 4th grade. I started having white blood ct high when i was 15 and...
    cherideigh cherideigh 31-35, F 1 Response May 20

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    I'm 28 and was diagnosed with PV

    when I was 16. All started with blood clot in a head - big pain in head and very thick blood content. I had very smart doctors around and they managed to stabilize my situation. After that I'm under Interferon alfa treatment - 3 times in a week. It is exhausting experience...
    LieneHogganvik LieneHogganvik 26-30, F 2 Responses Aug 29

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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. They couldn't figure out what was wrong with me. They ended up taking 13.5 liters of fluid off my stomach. They said if I would of wait d...
    suexzee90 suexzee90 22-25, F Feb 3

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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 internet about itching and i thought that i was alergic to something .So i made me an appointment to see a allergy dr.I done all...
    brandy23 brandy23 56-60, F 9 Responses Oct 11, 2009

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    Recently Diagnosed

    I am a 59 y/o male and was recently diagnosed. I keep copies of all my medical tests and it appears I've had elevated hemoglobin and hematocrit for at least 9 years. No doctor ever expressed concern until this past January when a Gastro doc. saw my hemoglobin was above 18 and...
    DaveF3 DaveF3 56-60, M May 17, 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 tests and I saw him four weeks later when he told me I had Essential Thrombocytosis. My platelets were at the one million mark. My...
    maky59 maky59 46-50 8 Responses Mar 11, 2009

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    Help. I'm new here and hubby has this awful

    thing. Need words of encouragement for him and myself. It sucks
    dotcomcali dotcomcali 36-40, F 1 Response Jun 10

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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 THRU 2 MONTHS OF EVERY WEEK PHBHS.   I DIDN'T KNOW WHAT I HAD CAUSE MY DOC AT THAT TIME WAS MORE FOCUSED ON...
    jorlinna jorlinna 34, F 2 Responses Feb 7, 2010

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    Just For Today

    I was diagnosed with PV in August of 2012. I received a prior diagnosis of another MPN (Essential Thrombocythemia) in May of 2012. I wanted a second opinion by someone who was more of an expert, so I went to Stanford Medical Center and was re-diagnosed with PV. Both PV and ET...
    psteuer psteuer 56-60 1 Response Jul 24, 2013

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    ELECTRICAIN ELECTRICAIN 51-55 1 Response Sep 14, 2013

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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 numbers were not quite right and then the next year the numbers were a little worse. The Dr. Thought it was probably an infection...
    Farmland Farmland 70+ May 17, 2012

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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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    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 about this cancer " And Yes It Is A Form Of Blood Cancer " and the treatments and living with PV. Come and join in the page and get...
    staylor57 staylor57 51-55 1 Response Sep 25

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    I was diagnosed just 3 weeks ago

    and while it is scary to come to terms with, I am glad I finally have a diagnosis and a game plan to feeling better. For years I have felt ill - severe fatigue, migraine headaches, unexplained aches and pains to my skin and body. I thought I was losing my mind and thought that...
    Kariliz Kariliz 51-55, F Aug 26

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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 support groups that are wonderful. These two groups will give you great information and support with this cancer. Note: The second link will...
    Daves1997 Daves1997 56-60, M 9 Responses Oct 13, 2009

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    Hi everyone. I am 44,

    female, breast cancer survivor for 4 years. My most recent oncology visit in March the Nurse said they were going to watch my bloodwork next time as my HGB was high. I asked her what it means and she just said "it means you clot more easily. Being very frank about it. Over the...
    dawsonsmommy dawsonsmommy 41-45, F 1 Response May 12

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    Pv For 17 (diagnosed) Years

    Just joined the forum and this group. I am a man, 39 years, and I have had PV for 17 years (diagnosed when I was 22). Discovered that something was wrong when aching in my fingers. Afte bone marrow biopsy, I was diagnosed PV. This spring I also tested positive on the Jak2...
    ArrangedClone ArrangedClone 36-40, M 1 Response Aug 2, 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 level and is extremly frusturating. Other than topicly applying Benadryl I have not had any other suggestions from my...
    Ecom Ecom 51-55, M 2 Responses Jul 29, 2012

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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 always in such great shape and had tons of energy. I get very emotional about this. of course the nausea every AM is much fun either. When I...
    Newmandj Newmandj 56-60, F 1 Response Apr 16

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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 seen by a specialist Dr within a couple of weeks who diagnosed my condition the only problem I had was itching...
    jennie1954 jennie1954 56-60, F 3 Responses Oct 17, 2012

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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 else that has this? I was told polycythemia vera is a non fatal cancer, has anyone else been told this?
    GabbyJo GabbyJo 56-60, F 1 Response Jan 18, 2013

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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 skyrocketing to over a million count. So I was started on Hydroxy Urea to control platelets. The extreme tiredness and double...
    curlybella curlybella 51-55, F 4 Responses May 21, 2010

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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 am currently being treated with interferon which seems to work well although some of the side effects are not very pleasant.
    sue196940 sue196940 41-45 2 Responses Aug 7, 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 seperate pulmonary embolisms. I also had a mini stroke 3 years ago and a seizer that I fell a full story in an apartment that broke my back, shattered my left arm, crushed my face giving me a TBI...
    wdwjr wdwjr 41-45 1 Response Aug 18, 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 symtoms and side effects. This is really scarey to me as I know it is a very rare and chronic desease. I just need help in...
    mperez55 mperez55 56-60 3 Responses Jan 4

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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 could do nothing although they offered a bone marrow biopsy which I took to rule out whatever they knew to rule out at the time. There really...
    cak1124 cak1124 56-60 Nov 5, 2013

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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 destruction to our lives this disease has caused in the 8 years since onset. I ill try to keep it as short as i can and then if interested you can read...
    dobb dobb 51-55 20 Responses Jan 13, 2011

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    Is polycythemia vera the same

    as polycythemia rubra vera?
    wheels1972 wheels1972 41-45, M Nov 22

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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 time migrated to New Zealand 2 years ago (2008). All the symptoms like redness of face , shortness of breath, bleeding nose & ears and during waking...
    edcachero edcachero 46-50, M Mar 27

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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 including dizzy spells, loss of appetite, excessive tiredness after a non exhausting day and slowly a very bloated and distended stomach. After abruptly...
    marlan1 marlan1 26-30 2 Responses Apr 27, 2012

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