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Polycythaemia Rubra Vera

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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 count,...

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  • Polycythaemia

    Hi,  I am hoping to find out more about my recent experience with polycythaemia and my blood readings from people here.  I’m 35, and have felt unwell for about a year. I suffer from quite bad anxiety and many of my symptoms were put down to that until recently.  I went for an appointment...

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  • Low neutrophill and high lymphocytes after phlebetomy

    Hi , I am 17 years male . I have high bp (whitecoat) . At doctor's office my bp is always 160/90 something like that and pulse rate 90-100 even after taking blood pressure medication (Vinicor D 25) . At home my bp remains in between 110-130 / 60--80 and pulse rate in between 60-90 bpm . Echocardiogram...

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  • Confused

    Hello all, I have been diagnosed with PV, am 38 yo male, and was wondering about my labs being off. My 5-HIAA and Chromogranin A testing has been elevated and are still rising. No tumors were found but these numbers still increase. I'm thirsty all the time but don't have any bleeding. I was...

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  • Follow up on JAKAVI

    As promised here are the latest news on taking JAKAVI for 2 months now. No adverse side effects and I feel better than ever. Saw my specialist this morning and my numbers are better than on Hydroxyurea. Someone might understand it better than I do (feel free to clarify) but it has something to do with...

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  • 9 Venesections in 10 weeks

    Hi I've recently been diagnosed with PRV and I've had 9 Venesections in the last 10 weeks to try and get my blood count down but after the last Venesection I've started to get tingling in my toes, and I was wondering if this is a side affect of the treatment. Thanks

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  • Fatigue with PV

    i have had PV for nearly 3 yrs. had a number of venesections and now taking 1 hydroxyurea daily and aspirin 3 times a week. My hemaglobin is normal but my ferritin is down to. About 10. Does anyone know if this should be making me feel fatigued.? I keep needing to lay down and am feeling unmotivated....

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  • Is it Polycythemia?

    For the last couple of years I am seeing increase in RBC , max it reached to 6.12 then went down to 5.33,5.80 and went up to 6.12 again. my HB always remain within 15 and lastest Hematocrit 48%. My neutrophil generally remain at 3-3.5 but dropped in last two test 2.83 to 2.5. I am little worried about...

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  • Blood results are fine but always sick

    For the 1st time since getting diagnosed in April 2015 my blood results all read 'normal' but I feel like I am constantly sick. In 9 months I have had 7 different infections - all hit me hard and took ages to recover. My Specialist put me on Hydroxyurea in Oct 2016 as my blood counts were out...

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  • 2 weeks on Jakavi

    Hi everyone, I started Jakavi 2 weeks ago and want to keep you posted. I don’t want to get excited too early, but I’ve had no adverse reaction at all. Maybe some gas the first few days...When I talked with the pharmacist, I was a little scared with the long list of possible reactions. So far so good....

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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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  • JAKAFI

    I am finding it difficult to tolerate Hydroxycarbamide and I was hoping that I could have the drug Jakafi which has been used in the US but because of the cost factor in the UK, has been difficult to get prescribed.  Has anybody in the UK been prescribed it and how has it worked for you.

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  • cost

    how much cost of hydroxyurea in uk or Ireland?

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  • Jakafi side effects

    hello everyone,  it’s official, I start Jakafi ( or Jakavi) by the end of the week. The hospital pharmacist called me today to list all the possible side effects. It scared me a little. Can anyone who use Jakavi tell me about there experience. I am most worried about the diarrhea, head achète,...

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  • Surprising blood test report after phlebetomy

    Haematology I am 17 years old male . In april i had typhoid . After treatement , i developed chest pained and had difficulty in breathing . I went to a doctor and my bp was 164/80 and pulse rate was 120 bpm. I was very nervous at the doctor's office . He ordered an ecg test and there my pulse rate...

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  • Possible Polycythemia?

    Hi! Can it be Polycythemia Vera? My dad, 56 yrs had these results at the blood tests. The doctor recently took blood for the JAK2 but I want some opinions until we get the result. 10.24.2017 Hemoglobin 17.4 (13-17.2) Hematocrit 50.5   (39-50) RBC 5.67    (4.2-5.6) WBC 9.8    (4-11)...

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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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  • 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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