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Polycythaemia Rubra Vera

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  • Possible polycythemia.... worried

    Hi my name is malk. During my visit to my psychiatrist my doc  did blood test as they usually do every six months.    I am obviously concerned with some of my readings and wanted to see what you guys thought. WBC. 4.79. 3.8-12.8 RBC. 6.04 4.2- 5.7 Hemoglobin. 16.7. 14-18.0 Hematocrit....

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  • can polycythaemia just disappear

    In july After 4 blood tests showing high red and white blood cells i was referred to Haemotologist who confirmed my bloods showed polycythaemia i had more blood tests including the one for the jak2 gene also had abdominal ultrasound. I was also told to stop smoking, which i did. Fast forward to mid...

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  • PRV and intreferon

    I have been on hydroxy carbamide (urea) for over six month and the itching it getting worse. I saw my regular consultant last week and he mentioned interferon. I said I would look it up on the net and we could discuss it when we next meet. I have done that. Are any others on interferon? I have...

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  • I'M NEW...RED BLOOD CELLS HIGH

    After spending 15 minutes with my Primary for blood pressure med evaluation, I asked how my blood tests were...he said fine.  After reviewing CBC, on line, my HCT was 51.5 along with all high results for all RBC's .  They have been high since 2013...last year he through out the word polycythemia. ...

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  • Newly diagnosed PV after stroke.

     Hi I’ve just been diagnosed as having polycythaemia vera after having a stroke affecting my left hand and arm .  I am almost 60.  I was in full-time work it is now one month since I had the stroke.  Having discussed this with the doctors and haematologists they said that my blood...

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  • Are patients with Polycythaemia Rubra Vera entitled for Free Prescriptions?

    I was diagnosed with PV in 2011. I've been managing my condition using Hydrea and Clopidogrel and I always paid for my medicines. However after checking on NHS website I realised that patients with PV might be entitled for free prescriptions. According to NHS (https://www.nhsbsa.nhs.uk/exemption-certificates/medical-exemption-certificates)...

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  • High RBC

    So i had a blood test few days back and my rbc came back high . i am 17 years old male and have high blood pressure . ( I become too nervous at Doctor's office while my bp is being measured and my cardiologist already confirmed it's White Coat but still i am on Vinicor D 25 and Solopose plus...

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  • Platelet count rising from phlebotomies

    I have not yet been diagnosed with PV, but I was hospitalized with a splenic infarction two weeks ago.  My blood numbers indicated polycythemia and my hematologist ordered a JAK2 test which came back positive.  I'm scheduled for a bone marrow biopsy in a couple weeks to confirm a PV diagnosis. ...

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  • I have high RBC count .

    Hi , I am 17 years male . Weight 75 kgs . Height 180 cms . In july i had chest pains and difficulty in breathing . On investigation , i had high blood pressure and ecg showed up tachycardia . My cardiologist ordered an echo test And the report was normal . So he concluded that it was all due to anxiety...

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  • JAK2 positive?

    I heard a radio programme recently which described some research that has been done in Iceland. Geneticists are studying the correlation between the age of a father and the number of spontaneous genetic mutations he passes on to his children in his sperm. There is a ratio between age and the number...

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  • Red areas on the back of my hands

    I've had PV for about 3 years and I have been perscribed Hydrea tablets for over a year now. Recently I have developed red areas over most of the back of my hands and the skin is dry and not so supple. Has anyone else experienced this condition. Thanks David Crane

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  • 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....

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  • Not dx yet, seeing hemo next Monday

    Hello! I'm female, 60yrs young. Over the last 7 years I've had health issue after health issue. Hole in heart (25mm) repaired Secondary adrenal sufficiency  Lupus (in remission) Asthma (related to heart)  And now this blood work over two years which has rise and falls and rises this...

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  • Hypertension & polycythmia vera

    hi I was dx with high blood pressure about 4 years ago.  That is how my Pv was found through routine blood tests.  I have never been able to get my bp under control for any length of time.  It fluctuates a lot.  Does anyone else have blood pressure issues along with Pv?

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  • Itching

    Does anyone else get he itching real bad in private area also in it's so inbarssing. I'm on hydrea in have been for a year.

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  • Looking for answers

    Hi! My name is Kim and I am a 36 yr old female. I have been followed for a decade for a lupus/sjogrens mix. I got labs done extensively my first 2 years then went off radar (remission) until age 30. I got labs but everything was ok until I flared in 2015. Since that time I have had elevated wbc ( exact...

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  • Polycythaemia and B12 Deficiency

    Is it even possible? I was diagnosed with secondary Polycythaemia late last year, sometimes need a letting every month, can sometimes go multiple months before needing one. I do not have the Jak gene, but the cause is unknown at this time. Went to one of my GP's yesterday for dizziness, tingling...

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  • high red and white blood count?

    I've been to see consultant with high red and white cells. Don't no exact readings but got lots of blood taken including a test fir the jak2 gene. The nurse had a problem getting my blood as it was thick. I don't go back to consultant until end of September so I'm a bit worried. Can anyone...

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  • Can you help me with these symptoms?

    I can't withstand heat, whenever i am hot i am sleepy and my body nurves are hot as fire. I am sleepy suddenly and my hands, feets, or my body kind of go numb. Everytime i have this, i also have bowl moment. I feel much better after toilet. My body is like crazy hot.  Sometimes my body is...

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  • Hydroxyurea side effects

    Hello all, I have not been very active on the forum for the last month, being on vacation, but back to work tomorrow. By the way, I found a travel health insurance that will cover me as long as I am stable for 7 days prior to departure.  That made my vacation. I found it on the internet by searching...

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  • Concerned about potential PV - Blood work results

    Hello, I'm a first time poster. I'm hoping that some of you will be kind enough to offer me some feedback on my blood work. My doctor showed no concern at all, but my blood work looks a little suspect to me. I made an appointment to see a Hematologist, but unfortunately I can't get in until...

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  • Diet and natural remedies

    Hi, I am a male of 56 years, recently diagnosed with Polycythemia Vera. Trying my best now to find a suitable diet, though my doctor tells me there is no connection between lifestyle (diet) and the outbreak/progression of the illness. I still think it is important what you eat and drink. My doctor strictly...

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  • In the papers today

    If anybody reads the Guardian, there is an article in it today saying that people with raised platelet numbers are more likely to develop cancer. Oddly, someone on this forum (maybe Peter) recently commented that they had been struck by how many of us had also had some form of cancer. Maybe it is the...

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  • Confused, any advice please

    Hi, found this website a few weeks ago after coming away from my doctors being told i have a increased HB 162 and PCV 51 which apprently has been elevated since 2012 when i joined the surgery) after going back and having another set of bloods and JAK2 test my doctor said that she would refer me to a...

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  • JAK2 negative PCV, anyone?

    I was diagnosed with primary PCV about 9 years ago, but have tested negative for any JAK2 mutations. Non-smoker, etc, so definitely not Secondary PCV (my EPO levels are almost non-existent.) I'm getting my first bone marrow aspiration/biopsy tomorrow (a little nervous about that,) and am just wondering...

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  • CBC Panel

    I'm not sure what happen to the other post I made. I really hope this goes through and someone can help....here is my latest bloodwork I had done: WBC...17.66...(3.98-10.04)...H RBC....5.07.....(3.93-5.22).....In Range HGB...14.5......(11.2-15.7).....In Range HCT....46.1......(34.1-44.9).....H MCV...90.9......(79.4-94.8).....In...

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  • Pv odds

    ive come across an interesting article that I think some of you might be interested in.  There are approx. 7.35 billion people in the world.  Pv affects 2 people per 100,000.  Odds of getting Pv are 0.0019%.  Approx 147,000 people have Pv.  Wow!   Zap

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  • CBC Panel

    I hope that the picture will be able to be seen. I want to go over my blood work seeing that my hemotologist has cancelled 3 of my appointments because she said it wasn't time to see me yet. Instead she wants me to go get drained and I don't want to because I want answers. I was told that I...

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