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Polycythaemia Rubra Vera

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  • POYCYTHAEMIA RV - NHS TREATMENT - JAKAVI

    I am a 70 year old male living in Essex UK.   I was diagnosed with PRV a couple of years ago and initially put on 2 x 500mg of hydroxy carb daily. This was later reduced to 1 x 500mg daily.   This, together with a venesection every three months or so, seemed to keep things under...

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  • 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,...

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  • Polycythemia Vera

    Hi,  My partner has just been diagnosed with PV, he went ot the Doctors as he was having Itchy skin for the last few years.  The Doc took some bloods and sent him for x-rays and an ultra sound.  He has to go for a Bone Biopsy soon. To say we were shocked was an understatemt!!!  I...

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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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  • Quick move to hydroxy - should I wait for venesection effects

    Hi.  I was diagnosed with probable PV on 23.1.18 with a haematocrit level of 63%.  Was started on immediate aspirin and weekly venesections.  By 22nd Feb it was down to 51% and heading down further the following week.  At my Consultant appointment PV was confirmed.  I was told...

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  • Astronaut DNA changes after a year in space

     Not really anything to do with PV, per se. I have just read a CNN article about the astronaut Scott Kelly who spent a year in space while his twin brother stayed on earth. 7% of Scott’s genetic makeup was altered including some changes which are linked to hypoxia. Secondary PV can be caused by...

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  • Poly Vera and Serum Ferritin level

    Have found the forum most useful. Am at early stages of diagnoses for possible Haemahromatocis as my Iron levels were at 451 ug/l and some of my bloods (Haemaglobin, WB, RB, haematocrit, Neutrophil) have come back as above range. Am still awaiting gene test results. what I’m trying to do is figure out...

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  • Weather.

    Hi Everyone. it's refreshing to read that you are talking about the weather and not much about our medical problems .I'm glad to report that I missed the snow storms in the north east US. But after spending seven weeks in beautiful Marco Island florida what snow birds call (Paradise )...

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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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  • 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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  • 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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