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. 243 People

    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

    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
    56-60, M
    1 Response Oct 17, 2013

    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
    Aug 1, 2011

    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
    36-40, F
    May 20, 2014

    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

    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
    56-60, M
    May 17, 2014

    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, 2014

    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
    1 Response Aug 18, 2013

    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
    2 Responses Apr 27, 2012

    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
    36-40, F
    Aug 8, 2013

    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
    Nov 5, 2013

    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
    1 Response Sep 25, 2014

    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
    46-50, F
    2 Responses Jun 10, 2013

    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

    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
    8 Responses Mar 11, 2009

    I was diagnosed with PV about a year.

    Not many symptoms however the blood counts are high. Although phlebotomy help bring down the rbc and haemoglobin count my platelets remain high. Doctor has prescribed hydrea. I am in my mid 30s and have a girlfriend. However due to pv I am not sure if I should marry. Can anyone...
    rockyd1977 rockyd1977
    36-40, M
    1 Response Jun 18, 2015

    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
    21 Responses Jan 13, 2011

    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
    26-30, F
    5 Responses Apr 10, 2013


    rjsgrama rjsgrama
    61-65, F
    1 Response Apr 14, 2014

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

    thing. Need words of encouragement for him and myself. It sucks
    dotcomcali dotcomcali
    41-45, F
    2 Responses Jun 10, 2014

    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
    1 Response Aug 26, 2014

    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, 2014

    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

    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
    46-50, F
    1 Response May 12, 2014
    Gaylie Gaylie
    46-50, F
    1 Response Mar 10, 2015

    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

    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
    May 17, 2012

    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
    31-35, F
    3 Responses Aug 29, 2014

    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
    26-30, F
    Feb 3, 2014

    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
    61-65, F
    3 Responses Apr 16, 2014

    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
    1 Response Aug 12, 2009

    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
    1 Response Jul 24, 2013

    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
    31-35, F
    3 Responses Mar 21, 2014

    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
    3 Responses Jan 4, 2014

    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
    Aug 20, 2013

    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
    41-45, M
    4 Responses Apr 23, 2010

    Angelinas Story

    jorlinna jorlinna
    36-40, F
    3 Responses Feb 7, 2010

    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
    2 Responses Jul 19, 2013

    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

    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
    3 Responses Jul 29, 2012

    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
    2 Responses Mar 16, 2014

    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
    41-45, F
    1 Response Jul 22, 2013

    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
    36-40, M
    3 Responses Jan 25, 2014

    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
    1 Response Oct 15, 2010

    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
    19 Responses Jan 30, 2011

    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
    10 Responses Oct 11, 2009
    1 Response Sep 14, 2013

    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
    6 Responses Oct 17, 2012

    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
    2 Responses Aug 7, 2010

    After a 4 month journey I've been finally

    diagnosed with pv. A year and half ago I started feeling extremely week and dizzy no matter how much I sleep. Then suddenly I start to experience all types of vision abnormalities such as light sensitivity, floaters, flashes and blurry vision. I still remember that day when I...
    naderhanna naderhanna
    41-45, M
    1 Response Jul 7, 2015

    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
More Stories