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Polycythaemia Rubra Vera

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  • Polycythemia ?

    I am 16 years old male and I dont smoke or drink.When I got checked up after having stomachache and vomiting, my Hb was high, 18.6 g/dL to be exact,and hematocrit was 53.4 then doctor told me it could be dehydration.In August,I started to feel slight headache like small pounding that doesnt hurt …

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  • harrishill1

    Everyone out there with Polycythemia Vera. I have been diagnosed for about 7 yrs now. I have done a lot of online research on PV. The hematologists usually only do venesections (phlebotomies)  for a short while because I learned that having just phlebotomies for a long time is not good. And …

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  • Scared of having pv

    Hi.im 23 yrs old and went for regular master health chk up in April this yr and came to know that my hb hct and RBC lvls are high.As it was just little higher than normal and 4 yrs back my levels were normal, oncologist told me wait for a month and again do cbc.As it turned out my hb was even …

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  • just diagnosed with prv

    I had a minor stroke whilst up the town shopping ended up in hospital where initial blood tests showed very high red blood cells. taken down to the haematology where the initial assessment was prv. tests later revealed jak2 . the results of my 1st test were haemoglobin 207 g/l  white count 10.0 …

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  • Itching

    Hi all. I was diagnosed with PV Primary 4 weeks ago and have had 4 venesections and take aspirin daily. I have a terribe itch which was one of my original symptoms which is not going away. It is worse when I shower, even with cool water and is usually but not always, on my chest. It also starts …

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  • Could I have PV?

    My GP is concentrating on my very low Thyroid level and thinks this is responsible for my total exhaustion.  However, my Haematocrit is 53, Haemoglobin 168 and I have many of the symptoms of PV - some of which could also be symptoms of Hypothroidism which I have had for 30 years. My concern …

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  • High RBC, Hemaglobin and Hematocrit?

    Hello! I'm new here and have a question about my blood tests. So I figured I would be proactive and order my own blood test and check to make sure I am healthy while trying to get pregnant. Everything was normal, including my magnesium levels, which was great, but on my CBC, my red blood cell …

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  • Confused

    Hi I’m a 29 year old male I’ve seen a  hematologist for high hg and hc levels. He ran a bunch of tests and told me I have  secondary  due to smoking and my brain fog was due to anxiety. I hg levels are around 18-19 and my hc is around 48-55 I am jak2 negative and my epo levels are …

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  • New ground for me

    Hi all, I found your discussion forum whilst searching for alternative treatment / diet recommendations, Polycythaemia Vera is a condition I have been diagnosed with (4 weeks ago) so Im new to this. Ive found lots of info online and on your discussions, so far Ive had one treatment (blood removal) …

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  • Anyone else suffering in this heat?

    My hair gets soaking wet this weather as soon as I’m out and about gardening ( in the shade)  washing kitchen floor hanging out washing nothing strenuous just normal everyday jobs. I asked my hairdresser she said nothing. To do with your hair it’s your body over hearing ? Any one else …

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  • Hydrea

    Hi everyone Has anyone had experience with having a port inserted? I am feel absolutely terrible on Hydrea but unfortunately it is nearly impossible to do a venisection because of my small veins to get blood for a test it is taken from the back of my hand. Any suggestions would be welcome.

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  • Possible secondary polychthaemia

    I have gotten a lot out of the posts and have a few questions. The last 7 years my blood work has always had my hemoglobin and hematocrit at the high end- ie around 45 percent and 15ish hemoglobin.. But my iron was generally good ie 55-65.. However in February my iron was 41 and my hematocrit was 48 …

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  • Polycythemia Vera

    I’m currently undergoing phlebotomy 2-4 wks and have forehead shingles and mouth ulcers. How can I avoid this ? How do I treat these flare ups and how long do they typically last? Oral pain meds aren’t enough.  Thank you

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  • JAK2 V617 mutation positive - keeping an eye out for PV

    Hi all, From my 23andme gene analysis I have the JAK2 V617 mutation. I wrote to a Professor who specialises in MPNs and she confirmed I do have the risk mutation but that not everyone with this mutation goes on to develop a MPN. However I understand that this is a slow burning disease and I …

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  • Hair

    This may not be in the best of taste, so I apologise if anyone thinks it’s a bit too personal. Has anyone noticed, since they were diagnosed, that their hair (on their head) smells different when it gets wet in the shower? For the last year or so I have found that the moment my hair gets wet it …

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  • harrishill1

    Hi everyone. Angella, sorry I suggested that you shd not just have phlebs. We do all have to make our own choices. I read that a few people with  PV have low ferritin levels. They also mentioned having leg cramps. I realized that my leg cramps are probably caused by low ferritin levels. I …

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  • PV and blood feels like it’s burning.

    Hi I’m new here. I was recently diagnosed with PV 3 weeks ago. I am so very uncomfortable my blood feels as if it’s boiling inside my skin. I’m not sure what to do. Can someone please help me. Thank you ❤️

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  • harrishill1 I was diagnosed with PV 7 yrs ago

    Hi everyone. I just wonder if anyone else has become suddenly allergic to all spices. I have been taking Hydroxyurea for approximately seven yrs now. I think this medication is now interacting with spices. I get canker sores inside the mouth and or blood blisters if I eat any kind of spice …

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  • Treatment for polycthemia...who's right?

    4 years after diagnosis...splitting headaches every day, rashes,dizziness, numbness...sky high bp.....treatment daily aspirin and Ramipril to lower bp (I think). Very experienced medical professional (gp..not ours) suggested in conversation (not consultation), he would recommend kemo (by pills?). …

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  • harrishill1

    Thanks to everyone who replied to my discussion about being suddenly allergic to spices. As to the person who lost his taste, I am sorry to hear that. If it were me, I would still tend to blame the Hydroxyurea. However. would continue to take the meds, as they work well to keep the red blood count …

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  • Jak-2 level lower with Jakavi

    Hello all My doctor just texted me the results of my latest Jak-2 test. I have been on Jakavi since December 2017. The level of Jak-2 went from 38% to 18%. I believe it’s a good news, but I’m in the dark. What does it mean? Am I less at risk to develop complications? Hoping to lower the dosage …

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  • EPO Levels

    I'm on the verge of diagnosis, but my doctor is taking forrrrrever in getting anything done. I had to bring the test results to his attention after two YEARS of Erythrocytosis (all levels above WHO Guidelines), and then started investigating. I have no risk factors and nothing else fits the …

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  • Do i have polcythemia Vera Age 18 scared

    Hi I am a very anxious person and I am wondering if I have pv because my doctor said I have polcythemia, she said to take another cbc after a week or 2 , on April 26 2018 I took a cbc and my results were 6.06 for rbc, 17.9 hemoglobin, hct 49.6. The doctors told me it was probably dehydration then …

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  • Scarred I have pv 29 year old male

    My rbc have been high since 2012 nothing has ever been done till now my numbers back in 2012 where gb 17 hct 49. I just had blood work done 2 weeks ago gb was 18 hct was 53 and epo was 5.1 now I’m waiting on jak2 blood test results. WBC are normal as well as platelets. 

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  • Polycythemia And Gout.

    It seems to be accepted that PV can cause or precipitate Gout if you had Gout previous to the diagnosis of PV. As there is no documented evidence as to what triggers the JAK2 gene mutation leading to PV, I wonder if there is some possibility that in my own case in relation to Gout which I am …

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  • Sore throat ?

    My husband was diagnosed in March, still having tests as he has not got the jak2 gene.  he has been unwell with sore throats, 2 in the last month, is there any connection.

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  • Leg Cramps

    My husband was diagnosed with pv in March when he was sent to the Emergency room due to very high blood pressure.  they ran many tests and was told he had suffered 3 mini strokes due to the thickness of his blood (PV).  He goes to the Hemetologist and has regular Phlebotomies.  Also …

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  • Gout still a pain

    Hi I was diagnosed with PV in Oct and have suffered with gout constantly since. I am hydrocarbmide and was put on a course of steroids which seemed to work and so was whined off them, I've only been off the steroids for 2 days and the gout is back any advice

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  • harrishill1

    Hello again. All those being tested for PV. Having high leucocites or white blood cells is not enough to suggest PV. Having a very high red count is the main symptom. There are additional symptoms, but everyone has different symptoms. Some of us ha ve redish skin, resembling a red tan. that was one …

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  • jak 2

    My husband was diagnosed with polycythaemia about 6 weeks ago after a CT scan a blood tests he also had a venesection. We learnt on Friday that he doesn't have the jak2 gene so more tests are needed. I would appreciate your thoughts on this. Thank you  

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  • diognosed with PV

    I have had Pv for 1 year. I am on a medication called Jakafi. It brings the white cells down,but it also brings the red cells down to a very dangerous level. my hemocrit is 8. any suggestions?

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  • Ploycythemiavera/ET

    Hi, My partner and I werre at the Consultant yesterday re the results of the bone marrow biopsy.  he now has Poycythemia ET!  He has been put on Hydroxycarbamide and  Allopurinol for the next 3 weeks and is also on the asprin. Can anyone give us some advise as I am desperately …

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  • Frequent Venesections

    I am one of the few PV sufferers who has been cured as a by-product of the cure of a much more serious disease. The “cure” involved about two dozen full blood transfusions, about half as many platelet transfusions and more chemotherapy than you can shake a stick at! The effect of the transfusions …

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  • Polycythaemia RV. I have been offered Rituximab.

    I am sure I posted this a couple of weeks ago but cannot find any trace so here goes again. I live in the UK. I have been on hydroxy carbamide for some time but have have been plagued with problems especially itching. My consultant offered me Rituximab as an alternative. She said it is self …

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