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Polycythaemia Rubra Vera discussions

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  1. HELP: The dreaded Blue fingernails HydroxyUrea side-effect!

    Hello everyone,

    Has any of you suffered from the blue fingernails side effect of HydroxyUrea?

    Does it go away on its own through time?

    If not, were you ....

  2. 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?:

    - ....

  3. Weird Polycythemia Symptoms Story - Need Professional Advice Plz

    Hi,

    I'm new here and have decided to become a member, to ask for help with understanding some issues with my condition.

    I suffer from a few conditions and ....

  4. 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 ....

  5. Haemoglobin decreasing without treatment?

    Has anyone found that their haemoglobin levels have gone down without treatment? Is this usual, or do the levels normally stay up and increase without treatment? ....

  6. 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 ....

  7. 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 ....

  8. 13yrs

    [b:1910532e5d]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 ....

  9. 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 ....

  10. 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 ....

  11. 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 ....

  12. 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 ....

  13. 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 ....

  14. 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 ....

  15. 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 ....

  16. 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 ....

  17. Polycythaemia Rubra Vera

    Well its over two years since I have been diagnosed with this illness. I have attended hospital on a regular monthly basis and had venesection at just about every ....

  18. 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 ....

  19. 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 ....

  20. Seekadvice on relief for severe skin burning after showering

    My Mum was diagnosed with PV last year following years of investigation by dermatologists of her only symptom - a severe burning of her skin following bathing, exposure ....

  21. 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 ....

  22. husband has polycythemia

    husband ok with it, on hydrea but i am terrified as everything i read says will die early from this

  23. 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 ....

  24. 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 ....

  25. 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 ....

  26. found out 3 months ago i had Rubra Vera

    Hi to anyone reading this, its 4th april 2008 and i found out 3 months ago i have Rubra Vera, i had in a two month period 16 pints of blood removed to get my blood ....

  27. I was diagnosed 2 years ago with PV As I am rather sma...

    I was diagnosed 2 years ago with PV As I am rather small and have small veins venesection was not successful. I have been taking Hydroxyurea but am rather sensitive ....

  28. prv, brian, tried your email thingy dont want to sign up for

    hi brian, tried to get in touch but dont waant to signup to another website so please reply on here, your comments our much appreciated, ive not been well of late ....

  29. PPRV

    smile Hi I was officially diagnosed with Primary Polycythemia Rubra Vera 3 weeks ago. Have been blood letting for 2 months before diagnosed, that has its own problems ....

  30. Newly diagnosed

    I am really glad I have found this site. I am a 50yr old woman and was diagnosed with PV in May following a pre op assesment. I have had no symptoms at all and apart ....

  31. Been living with PRV for 17 years

    Really interesting to read some of your experiences - and great to be able to share common ground. Was treated with Hydroxyurea very successfully for 13 years before ....

  32. had prv for ten years now im stillhere

    [color=blue:55a373c946][/color:55a373c946] i am still having blood took off every five to six weeks it is keeping it under control. but i am not very well most ....

  33. I am now 33 years old and was diagnoised with PV in Augu...

    I am now 33 years old and was diagnoised with PV in August 1996. At first I was on asprin 100mg daily. No major problems except few headaches.

    Considering my age ....

  34. Tried to reply to comment on polycythemia but it would n...

    Tried to reply to comment on polycythemia but it would not send. If the lady would like to contact me I will reply

    [i:7e84fd34f4]This message was automatically ....

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