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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. 218 People

    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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    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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    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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    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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    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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    "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 struggle for survival for me and my wife who has polycythemia vera.She finally got her disability decision one year ago from the Administrative Law Judge "ALJ" It was...
    dobb dobb 51-55 3 Responses May 5, 2012

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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 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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    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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    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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    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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    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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    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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    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 2 Responses Jan 25

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    Just Diagnosed

    Ok so I am 31 years of age and believe I am quite young to have this disease. I was diagnosed yesterday and recieved my first blood let straight away and have another in 3 days as my hct level was so high. My white cells and platelets are also very high so I am anticipating...
    sezza781 sezza781 31-35, F 1 Response Feb 27, 2013

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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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    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 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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    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 jax blood test that came back wrong he redid the test and i get results this week. I dont have any syptoms and...
    polylou polylou 46-50, M 1 Response Mar 24, 2013

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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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    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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    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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    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 Apr 16

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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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    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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    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 36-40 Aug 18, 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.  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 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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    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 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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    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 51-55 Nov 5, 2013

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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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    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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    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 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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    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 own through time? If not, were you able to get rid of it using some method/medication? If so, kindly explain to us how... Thanks in advance!
    Sambi777 Sambi777 31-35, M 1 Response Feb 21, 2013

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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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    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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    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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    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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    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...
    staylor57 staylor57 51-55 2 Responses Sep 2, 2011

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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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    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 4 Responses Apr 10, 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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    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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    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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    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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    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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    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 8 Responses Oct 13, 2009

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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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    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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    Related Experiences

    I just got my new Vera Bradley clementine wristlet.i have a clementine smart phone wristlet and pink swirl lunch bag and backpack and some days ago I got my clementine duffel bag...
    cchristinaa cchristinaa 13-15, F Jun 25

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