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Rare, common or in between

Posted , 5 users are following.

monneywese
monneywese

Some members of my family  have said that their Drs. told them that polycythemia rubra vera is common.  My research says not at all common.  My. Dr. says he has lots of patients with this.  However, he is the only haematologist in a 50 mile range.  

I just wonder why there are so few treatments for this.  With me, phlebotomy sends my blood pressure into the stroke range so needs to be stopped.

Basically, my question is - do any of you know anyone else personally who has this?  It seems a lonely and kind of painful business.  Sorry to seem sorry for myself (I am not), but it still seems to me a bit unreal.

Any thoughts?  Are we really so rare?

M.

0 likes, 11 replies

11 Replies

  • bernard42121
    bernard42121 monneywese

    Posted

    There are two types of polycythemia - the one you have and the one I have which is JAK2 polycythaemia vera.  I believe yours is more common and mine more difficult to deal with.  I was informed that the condition is uncommon,although I have heard of one or two people who have what appears to be similar condition.  Currently my treatment is regular venesection and medication to control the severe itching.  I wish you all the best with your treatment
  • monneywese
    monneywese

    Posted

    Hi Bernard - Yes, I also have the JAK2 type, and I guess I will adjust to it in time.  Thanks lots for the reply - it does help to know there are others.  M
  • doug66
    doug66 monneywese

    Posted

    I've had the JAK version for 9 months now, at first it was 6 vena sections to get it under control,  now on tablets with little or no side affects . Mood swings to start with as I didn't understand what was wrong with me. I now just get on with life and enjoy it . Stopped smoking which made me feel better anyway. ...I've spoke to a few others on here  but don't know any body personally with polychythemia..sometimes life gives a wrong card you just make the most of what you've got.

    My wife does say I'm a rare breed ....

  • geoff-mpnfamily
    geoff-mpnfamily monneywese

    Posted

    Sorry to hear you feel alone in this, it's really hard to cope with when no one else gets what you are experiencing.  

    There are several closed (Private) support groups on Facebook,  

    American ones:

    Polycythemia Vera supportive Friends

    Polycythemia Vera

    MPNs How we treat them

    English:

    MPN Family Friends & Supporters UK /Intl (thats my one)

    And there is a large UK Charity called MPD Voice (MPN Voice) you should be able to google there website.  

    • geoff-mpnfamily
      geoff-mpnfamily

      Posted

      Oh just in case you don't know,

      MPN (Myeloproliferative Neoplasm) covers Polycythaemia Vera, Essential Thombocythaemia,  & Myelofibrosis. 

  • monneywese
    monneywese

    Posted

    Hi Geoff -  Thank you SO much for that information!  I am not on Facebook, but may have to get with it and join.  I will be in UK for awhile starting late November and want to see a Hematologist there just to see if there is perhaps a "watchful waiting" way to treat this.  But this group is great, and I bet the facewbook ones are a big help.

    Thanks again - M

  • monneywese
    monneywese

    Posted

    Uh oh - I forgot - if those groups are closed and private, how do you join?  I wonder what their qualifications are.  M
    • geoff-mpnfamily
      geoff-mpnfamily monneywese

      Posted

      Hi monneywese, 

      When you find the group you'd like to join you will see an option to join, the admin will then add you to the Group/s.

      As far as the Facebook groups are concerned,  there won't be anyone there as a qualified specialist.  It is just filled with a lot of people who have little to a large amount of experience,  knoledge and support. 

      MPD/N Voice tend to be similar,  but if a question cannot be answered (or if there is any doubt) the admin e-mails Professor Claire Harrison at Guys & St Thomas hospital.  She is one of the worlds leading haematologist. 

      I hope to see you around either here or on Facebook. 

    • geoff-mpnfamily
      geoff-mpnfamily

      Posted

      Think I'm having a PV brain moment, 11-2  in every 100,000 people are diagnosed with Polycythaemia each year. 

      Thats pretty rare, i've had GP's laugh at me and say they have never heard of it... so out comes the booklet from 'Leukemia & lymphoma Research' stating that I have a Myeloproliferative Neoplasm. I get a lot of satisfaction at the change in attitude and panic in there voice in those moments.  I can be so wicked at times lol.

  • dan84
    dan84 monneywese

    Posted

    Hello monneywese,

    Regarding your question about whether or not prv jak2 is rare?

    Id say it depends on your age as my consultant has said it is common in ages 60+. I however am 30 which she said is very rare at that age.

    But then is it rare or is it just that when you hit 60 you have a load of tests done to see how healthy you are which then you may find you have prv.

    The reason I was diagnosed was because my uncle died of a heart condition and my dad wanted us to get checked out to which a nurse taking my blood said "you have really thick blood" then asked a few other things and noticed I look tired so I said that was normal im constantly tired.

    if it wasnt for that little chat I may not have been diagnosed with it.

    so I personally think its not rare and that if there was more thorough checks done say in are 20s more people would find they have it.

    thats my own unprofessional opinion.

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