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Polycythaemia Rubra Vera

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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 including...

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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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  • 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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  • 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?). Scary...can...

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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 in...

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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 is...

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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 of...

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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 differential....

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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 on...

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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 certain...

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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 taking...

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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 of...

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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 worried....

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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 is...

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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 administered...

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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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