Polycythaemia Rubra Vera

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  • jenn25281
  • harrishill1
  • Sandra R
  • david02304

    Any advice on itching

    I was diagnosed with Polycythaemia Rubra Vera some 4 years ago following a routine blood test. A routine of Venesections and Asprin have brought my blood down to normal levels. I am now having multivitamin tablets with a trace of Iron, and have not had a Venesection for some months, and am now off Asprin....

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  • christabel999
  • Guest
  • rebecca169
  • dotKOM

    Polycythemia Vera & Ankylosis Spondylitis - Pakistan

    is anybody here with PV or AS from Pakistan? or sub continent? i'm blessed with PV & AS (diagnosed four years back), but i believe my doctors are still trying to diagnose the actual problem. i've been recently asked to get the MRI Dorsal and CT chest done (both with contrast). i need to...

    < 0 replies _ 1 vote
  • Sambi
  • dan65
  • Sambi
  • lynne321
  • Sambi

    Has Any of you Experienced This??!

    Hello, I've got a question: Has any of you (males) experienced "retrograde ejaculation", (retroejaculation), after being on one or more of the following drugs?: - HydroxyUrea - Warfarin - Pantoprazole - Allopurinol Does any of the above drugs have side effects related to lack of sperm...

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  • derrick2
  • Guest

    PV - Confused

    Diagnosed about3 months ago with PV. My GP said I had primary PV and refered me to haematoligist, who said I had primary PV. Have had 3 venesections in 6 weeks and at last appointment said blood within limits and that the frequency of venesection was too frequent and would probabaly put me on tablets....

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  • Desi_Man
  • Cobh
  • annashadow

    confused can anyone help

    Hello,I was diagnosed with secondry poly, blood results today (all receptioist)would tell me) now showing slight anemia,couldnt get an app.with the only doc at surgery (as mine left 2weeks ago)told them to leave it.Dont see doc hospital until august.I understood that if you start showing signs of anemia...

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  • annashadow

    confused can anyone help

    Hello,I was diagnosed with secondry poly, blood results today (all receptioist)would tell me) now showing slight anemia,couldnt get an app.with the only doc at surgery (as mine left 2weeks ago)told them to leave it.Dont see doc hospital until august.I understood that if you start showing signs of anemia...

    < 0 replies _ 0 votes
  • BLUEDIAMOND

    13yrs

    my husband has had this prv for 13yrsnow and is 66yrs old and wright from the start he has had phlebotomy, and its kept him ok no drugs at all and when he first had it it took two weeks every day of taking 500mls of blood off to get it to a normal level, he still has it off now but not so often as it...

    < 1 reply _ 0 votes Last reply
  • Sally Kane

    polythemia ruba vera and budd chiari syndrome

    Hi I was diagnosed with poly rv in 2000 as I had a blocked liver caused by the thick blood I now have 3 stents in my liver and am taking walfarin and aspirin to stop any future clots. I get extremely tired sometimes after eating, somedifferent times after ging to the loo. it seems there is no rhythm...

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  • Guest

    PV

    Since 2007 I was confirmed as a PV patient,after born marrow test confirmation of Jak 2 mutation and giving (Vena section)500mlg blood when my PCV above 52%. In a way frquency of bloodletting is 6 to 7 times a year. Since of this month I started Hydroxyurea, waiting 2 weeks to do FBC test, to find...

    < 0 replies _ 0 votes
  • Guest

    primary polycthemia rubra vera

    I was diagnosed some 18 months ago, having read all the articles i could, i found a few things, firstly how scared i became, the realisation i may only have days or months or years, sounds stupid but you just do not know. The variant stories and mediacl information for the illness, how i would love...

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  • Guest

    If you've got to have it...

    Have something interesting! I was diagnosed with PRV after having elevated LFTs. Blood counts were relatively normal - slightly elevated but nothing to write home about. As I am female and in my mid 30s, I'm a little outside the normal range. Most of my problems came after I was diagnosed- platelet...

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  • Guest

    Polycythaemia

    I started to feel ill suffering with loss of breath, dizzyness and palpitations in the summer of 1983. I was told by my Doctor my red blood cell count was elevated but should go back to normal. After almost 2 years of suffering from this I was dianosed in 1985 suffering from Polycythaimia Rubra Vera,...

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  • Guest

    wipe out!

    Havent got a lot to say Have been diagnosed with prv for nearly 10 years and stay pretty well most of the time , however as now I have episodes of total wipeout when i can barely put one foot in front of the other Like most people i dont know the long term prognosis and if these episodes will increase...

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  • Guest

    PRV - long diagnosis

    I was first alerted to a marginally high Haematocrit (HCT) count by the docs at work in 2003. They packed me off to a local hosp to see the blood consultant and after a year I got bored with not much info. Went to my home GP and had another blood test and he reckoned that HCT at 0.51 was OK for a 50...

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  • annashadow

    just diagnosed.

    Hello I was diagnosed a few weeks ago, as taken into hospial in emergency as blood pressure 218/120 doc did ecg and found I had had 2 silent heart attacks she was worried I was about to have a massive one!After many blood tests and tests for my heartDoc came and said oh well your blood is very thick...

    < 5 replies _ 0 votes Last reply
  • Cobh

    Polycythemia and flying

    Hi there, I am newly diagnosed and was wondering if anyone knew if it is safe to fly when you have this condition, bearing in mind the advice you get regarding clots and high altitudes. I am due to fly to the UK for Christmas, which is only an hour's flight from Ireland. However, I keep forgetting...

    < 1 reply _ 0 votes Last reply
  • Nik

    Anagrelide?

    Hi everyone, Does anyone have any experience of anagrelide? My mum has been treated for PV for the last 27 years and in the last year the consultant has brought her off Hydroxyurea and put her on 0.5mg of Anagrelide instead. The change in her has been noticeable, her blood seems to be under control...

    < 0 replies _ 0 votes
  • Guest

    Just been diagnosed at 35!

    What shocks me is that I have had abnormal red blood count for at least 3 years and no GP ever did anything, in fact even now I had to force them to refer me to a Haematologist, otherwise I was going to go private. I am just wondering how many people have had health problems that GP's ignored, I...

    < 3 replies _ 0 votes Last reply
  • CINDY

    Secondary Polycythemia

    I was diagnosed a year ago and was told I could not be treated owing to my lungs being bad. I was discharged from the hospital and put under my doctor to monitor my blood. He was not happy as he was not told what he was monitoring me for. He wrote to the hospital and the letter came back and said...

    < 1 reply _ 0 votes Last reply
  • Guest

    newly diagnosed prv - confused

    Hi Im looking for some help really... im newly diagnosed with PRV after many months of tests etc. Had JAK2 test whilst pregnant which was positive. Platelets been high for a long time now - usually in 800-900 range. I am 36 Whats the prognosis with this ? I am waiting to see a consultant re stem cell...

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  • Bruyere

    Polycythemia

    I did try to register with this site - for some reason it would not let me - so this message will end up as being from a Guest - Sorry about that. Basically I need some info on Polycythemia (message is a bit long) again apologies in advance. I have also posted part of this message to the Crohn's...

    < 2 replies _ 0 votes Last reply
  • John Lace
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