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Polycythaemia Rubra Vera

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  • UrosD 2

    Life with Polycythaemia

    Hello, I was diagnosed with PV a 15 days  ago. I am 39 years highest values before phlebotomy ETC 7.7 (3.9-6.0) HGB 197 (120-180) HCT 0.58 (0.32-0.52) I did a lot of analysis and results are: EPO is low JAK2 mutacion ( in January negative - In Marth positive but i did analysis in diferent

    6 replies 0 votes Last reply
  • angela13591 1


    hi i dont know if anyone can help, very confused with my results. Hb >165 pre venesction, Hct has been at its highest .50, epo low, still awaiting axon 12 mutation yet JAK2 negative. bone marrow showed low cellularity for my age yet no other changes. it all seems very contradicatary. could this

    2 replies 0 votes Last reply
  • marie-jos6518 2

    Interferon or Hydrea

    Hello pv community, Just back from my Dr appointement and he thinks that I should start medication very soon. Mainly because of my high platelets count. I'm from Canada and I don't know what the number means exactly but it's at 1100. At first, he wanted to put me on Hydrea right away, but, after

    13 replies 0 votes Last reply
  • julia15874 3

    Results at last!!

    Hi all as you know I went to see a new heamotologist yesterday, I took all my blood results, jak2, JAK exon 12 and epo results, he looked at them all in fine detail, asked if I smoked or ever smoked, I said no. He said it is without doubt in his mind I do not have polycythemia Vera, he could give

    4 replies 0 votes Last reply
  • kerry31068 1

    holiday insurance

    hi all just joined and looking for some advice. i was diagnosed with polycythemia a yr ago and currently on 1% oxygen 15hrs a day. im looking to go abroad later in the year for a holiday but insurance is out of my price range. an y tips ????? im in wales uk  

    7 replies 0 votes Last reply
  • Zapamania 4


    Happy Easter to all my MPN friends.  Wishing you all peace and health.  Maybe by this time next year they'll be a new drug or cure for us.  Gotta keep hoping!  Zap

    2 replies 0 votes Last reply
  • lidia1972 3

    Low iron but high RBC ??

    I write a while back with possible pv diagnosis, my question is can you have low iron (36) and high hemoglobin hemocrit at the same time? I have symptoms of daily fatigue, so I asked for a iron test which doc said you are def not anemic with red blood cell value like that. I then went back and

    3 replies 0 votes Last reply
  • julia15874 3

    New specialist appointment

    Hi after eight months with my heamotologist and only having the jak2 and JAK exon 12 mutation tests and not really progressing any further with a diagnosis of either a primary course or a secondary reason for my polycythemia, I've now set up a new heamotologist appointment on the 18th of April,

    18 replies 0 votes Last reply
  • mejeroca 2

    Recent CBC questions and concerns?

    I just received my most recent CBC and these were my results: WBC High 12.1 K/uL RBC High 5.13 K/uL Homoglobin High Normal 15.0 g/dL Hematocrit High Normal 45.6%  Platelet count High 403 (this is actually down from last time which was 489 while everything else was normal) MPV Low 9.3 fL Abso Mono

    4 replies 2 votes Last reply
  • natalie41165 2

    B12 - conflict

    Before my PCV was discovered, I had B12 issues and took B12 tablets, and it was sort of under control. Co-incidentally B12 and PCV symptoms and diseases are similar initally.. Headaches, dizziness, nausea, problems with internal organs malfactioning. My heamotologist (who I don't like, but the

    5 replies 0 votes Last reply
  • Zapamania 4

    Jakafi side effects

    ive been on Jakafi for almost 5 months.  I've just noticed that I have a blister on my palate of my mouth. I'm sure it's a side effect of Jakafi.  Does anyone else have blisters or sores in their mouth due to Jakafi.  What side effects beside mouth sores are you experiencing?  Linda

    1 reply 0 votes Last reply
  • Zapamania 4

    Bone marrow biopsy

    i had a bmb today with anesthesia and was wondering how long it takes for the site to heal?  How Long before you don't have to wear a bandage?  

    5 replies 0 votes Last reply
  • robtuck 2

    Dr's just told me I might have cancer and to wait 3 months???

    I had an appointment with my Dr 3 days ago, he told me I may have Polycythaemia, my Hemoglobin (is it?) on a recent blood result showed over 300 (30?)..  I'd never even heard of this before what he told me was totally unexpected, he basically said "You might have bone marrow cancer" after that I

    3 replies 0 votes Last reply
  • Zapamania 4

    Pv or et

    hi all I was dx with Pv about 4 1/2 y s ago.  Was going to a hematologist.  My platelets would go up 100 pts one month and down the next.  Once my platelets hit a million, I changed to an MPN specialist.  He first put me on Hydroxyurea which I couldn't toleratr.  Now I'm on Jakafi about 4 plus

    43 replies 0 votes Last reply
  • julia15874 3


    Hi can you pay privately to have a venesection/phlebotomy in the ? I'm still ongoing with the saga of a diagnosis and my blood dropped so on a wait and see scenario at the moment but it's on the rise again after my last blood test which was last week its now up at 16.5 and 0.48 which isn't as

    10 replies 0 votes Last reply
  • lidia1972 3

    It's me again!

    Still trying to be diagnosed as hematology visit is not I wrote a while back with possible pv diagnosis, my question is can you have low iron (36) and high hemoglobin hemocrit at the same time? I have symptoms of daily fatigue, so I asked for a iron test which doc said you are def

    0 replies 0 votes Posted
  • leigh74005 3

    PV male 38 years old?

    Hi all. I am really hoping that I don't have this but here Is my story. I have been having abdominal pains for 6 months now. Had ultrasound, ct and Mri that all show nothing. I had a follow up appointment with my gastro doc on Thursday that I thought was to finalise things and be discharged. He

    17 replies 0 votes Last reply
  • julia15874 3

    PV question

    Hi how many in here are diagnosed with PV that have a jak2- JAK exon12- and it's due to another mutation (if so what mutation)or the bone marrow showed that it was PV?

    12 replies 0 votes Last reply
  • tony0952 1
  • debwes 2

    Baby Aspirin and Nausea

    I was recently diagnosed with PV. I just started taking 81mg of aspirin last week and have been nauseated about the same amount of time. I generally only get nauseated right after I eat or drink anything, even water. I know long term aspirin use can cause stomach issues but I can't believe it would

    3 replies 0 votes Last reply
  • julia15874 3

    Primary congenital familial polycythemia

    Today I received a call from my mother, she told me my brother had been taken into hospital with dizziness and extreme headache with aura, now if you knew my brother you would think not again, he's five years older than I am at 52, he's already had part of his bowel removed which he consequently

    1 reply 0 votes Last reply
  • angela25928 3

    Funny taste

    This is a bit of an odd question. The other day I bought some Spanish courgettes. I cooked one in a pasta sauce and it tasted really, really bitter to me. Like when a cucumber or a courgette has been accidentally fertilised and goes bitter. Hubby said it tasted fine. Tonight I cooked the other. I

    12 replies 0 votes Last reply
  • harrishill1 4


    Just to make the diagnosis of PV clear, I have PV with the jak2 gene mutation. My PV is caused by this gene mutation. Polycythemia Rubra Vera can be caused by some other thing in the environment, or some other problem lying undetected in the body. The doctors will endeavor to find what is the

    0 replies 0 votes Posted
  • felicity09575 2
  • anna71665 2

    Scared that I have PV..

    I'v done the jak2 test and it was negative but the values of WBC RBC HGB and HCT are still high. These were the values of my last examination: WBC 16.0 (4.4-11.3) RBC 5.90 ( 4.20-5.50) HGB 17.3 ( 14-17) HCT 52.1 ( 37-50) Does these indicators means that I have PV or does someone with these values

    25 replies 0 votes Last reply
  • lidia1972 3

    Please help I am scared!!

    Hi everyone! This is my situation: 44 yo woman that has weird symptoms for about a year: Muscle bone pains for 5 months straight, EXTREME fatigue, some night sweat, feeling out of it, dry mouth dry eyes, floating stool as of lately, what worries me is my blood work, somewhat high hemocrit

    13 replies 0 votes Last reply
  • Zapamania 4

    Bone marrow biopsy

    i was dx with Pv about 4 1/2 yrs ago based on blood work and the jak2 mutation.  I never had a bone marrow biopsy but am starting to realize I need to have one. Wondering if those of you who have had them were you awake or sedated?   What was your experience like with or without sedation?  Thanks. Zap

    27 replies 0 votes Last reply
  • keith28441 3

    Interferon Treatment

    Hello Guys I was wondering if anyone out there is being treated for their PRV with interferon injections? I was originally told by my Haematologist that I would have to go on to Hydroxycarbamide but the hospital review panel that reviewed my case is saying that I need to go on Interferon because

    34 replies 0 votes Last reply
  • marie-jos6518 2

    Just won the million! Platelets.

    Hi, I love to read from all of you. I'm just back from a visit to my hæmatologist and the news are not great. I was hoping that the fact I missed a phlebotomy (because my hematocrit was ok) would help my platelets go down but they went up. Passed the million. My dr decided to stop the phlebotomies

    15 replies 0 votes Last reply
  • Clicker 2
  • Orseblue 3

    My bottom spine felt like it was exploding

    Hi, I was dignosed with PV 2015 told I had it for sometime like years, got the jak etc. Last few weeks I been getting this horrid feeling at the bottom of my spine. Drove around a roundabout and had to break behind a car and after, my bottom part spine felt like the marrow was falling out. I keep

    15 replies 0 votes Last reply
  • john17871 2

    Hematocrit improved, mystery continues

    Quick history, diagnosed with Polycythemia in early OCT of last year, diagnosed a couple months later as secondary. Started with HCT of 59%, last letting at 49% in mid-Nov, bringing it down to 42. Danced around between 41 and 44 until this week, where it's now 45.7. Only thing that changed was I

    7 replies 0 votes Last reply
  • vadhna sam85590 1
  • mia96968 2

    Scared I have Polycythemia

    Hi guys, I'm  new here. Last Friday I went to my GP because I was feeling left upper side pain in my stomach after being constipated for some weeks, and she ordered me an ultrasound and a blood test. I have an appointment fro the ultrasound on Feb 23 but my blood tests came back on Monday and I

    15 replies 0 votes Last reply
  • david64514 1

    Concerned about CBC numbers

    I'm pretty concerned with my recent CBC. I'm not sure if I'm sorting myself or not. I'm seeing a hemotologist in a month. I wasn't dehydrated nor do I have sleep apnea. RBC - 5.79 Hemoglobin - 17.2 Hematocrit - 50.2 Platelet - 218 WBC - 7.8 I don't have any symptoms of anything. The only other

    2 replies 0 votes Last reply
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