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Polycythemia

Posted , 8 users are following.

ellen68007
ellen68007

I have a question for the most amazing and helpful friends on this forum. I have not posted for a while because my tests indicated I do not meet the criteria for Polycytemia Vera Ruba. I do however have secondary Polycythemia. I was just wondering if I still qualify to be part of this forum. I would like to be BUT not if I qualify to ask questions. I know this is a difficult question to answer but the fact remains I do have a blood disorder and it is Polycythemia. Let me know what your take is. I will accept your answers.

Ellen from Canada

0 likes, 17 replies

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  • clem19079
    clem19079 ellen68007

    Posted

    Why wouldn't you take advantage of this forum? You still have the disease. When my consultant mistakenly told me I had PRV, she advised me to stop smoking and drinking. Turned out she was wrong, though I stopped smoking and drinking anyway. Keep well
  • paul250360
    paul250360 ellen68007

    Posted

    Yes Ellen, why not. Haven't seen any rules to exclude you !!

    A fact that some of the PV / PRV followers may not be away of is that quite a number of babies are born with polycythemia but it disappears in the first few days of their lives.

    cheers

    Paul from Australia

  • Suzyq1958
    Suzyq1958 ellen68007

    Posted

    Of course you belong on this forum! The word Polycymeria includes you most definitely!

    i too am at the beginning of this journey to find out what's wrong with me.  Having changed hospitals I now have an appointment with Haematology on the 26/4 and paid privately for the JAK2 blood test and I at this moment in time don't know where I belong! But everyone including yourself have made me feel very welcome on this site and given support during a worrying journey is most def appreciated.

    i look forward to hearing from you in the future!

    best wishes Sue

  • peter98873
    peter98873 ellen68007

    Posted

    Hi Ellen.

    Polycythemia is just that however you look at it.  The fact that it comes in different degrees does not affect the disorder.  Other illnesses come in various forms too but they remain the same basic state.  PV can develop into different states of the disease and be treated a little differently each time.  The medics still treat the disorder however it reveals itself.  I see no reason for you to exclude yourself from this forum.  If you benefit from the comments of others then there is no need to deprive yourself of the assistance.  My PV has slowly developed into MF but I still visit the same medics I have always seen from the outset.  Keep well.

  • john_59578
    john_59578 ellen68007

    Posted

    For two years the experts couldn't determine whether I had primary Polycythemia or secondary. Now they say it's primary, i.e. PV, Polycythemia Vera - or some add 'Rubra' and call it PRV.

    It seems that the disorder progresses slowly - and may remain stable for long periods of time. 

    I don't think it matters for the purposes of this group whether you have secondary or primary. Treatment may be the same - venesections for eg. And daily aspirin.

    In your case, finding the cause of your secondary P would probably help. I don't think they know what causes PV. And that's why they can't cure it.

    John   

  • harrishill1
    harrishill1 ellen68007

    Posted

    Hi Ellen. If you had tested positive for the jak2 gene mutation, you would h ave true polycythemia Vera as I do. However, if you did not test positive for the jak 2 gene mutation, then you have secondary Polycythemia Rubra Vera. I think that is probably better than being poisitive for the gene mutation. However, whichever kind you have, you can live a normal life span. Especially if you are being treated by a hematologist. I have polycythemia Vera, and am being treated with Hydroxyurea. It works well for me. I also get a complete blood test on a monthly basis. His nurse lets me know if my blood is high or not.

    Best of luck, 'universes1

     

  • bugmann
    bugmann ellen68007

    Posted

    Ellen 

    Of course you belong here with us. Primary and seconary are both Polycythemia. however the good news is its my understanding if they cure the primary illness that gave you PV  you could be free of PV, Where I am confused is my Dr said their is no cure of PV but hopefuly he just refers to primary PV only which is what I have, 

    I look forward to reading more about you.

    Marty

    • ellen68007
      ellen68007 bugmann

      Posted

      Thank you so very much. The friends I have talked to on this forum has been so helpful! Yes I did get a solid confirmation from the Hemotologist that it's a secondary Polycythemia. After a zillion tests since July and two bone marrow aspirations and phlebotomy!s, I was told my very last test results confirmed COPD. That is why I gave has problems breathing with minimal activity. I was just turned back to my family Doctor. I am on blood thinners and the Hemotologist recommended no more phlebotomy's . That concerned me because my red blood cells were high. Was just told to stay on blood thinners. My family Doctor has been in India for 3 weeks but back tomorrow. I have been on B-12 injections. 

       

    • clem19079
      clem19079 ellen68007

      Posted

      Will you not have regular checks to insure your levels are normal? Secondary or primary, you would still need to be monitored. Hope you will take steps to ensure your copd doesn't get worse. It won't get better better you can help to prevent it from deteriorating,. Best wishes.
    • clem19079
      clem19079 bugmann

      Posted

      There's a trail drug called roxilitnib, it's not a cure though not far off it. Then again you have to be suitable. I was offered it but the bone marrow and constant blood tests put me off. I have a needle phobia so I gave that one a miss.
    • ellen68007
      ellen68007 clem19079

      Posted

      Clem that was the first question I asked when I saw the oncologist for my last visit with him. We don't have an Hemotologist in Sarnia so that is why my family Doctor refered me to this Doctot. Not to mention to rule out cancer as the cause. I had to travel to see the Hemotologist. I had forgotten to ask her how often I should have a cbc to check on my blood levels. My family Doctor said once every six months. Then on my last appointment with the oncologist two weeks ago I asked him. His answer was the same. Every six months. He also wants me to follow up with the respirologist due to the diagnoses of copd. To stay on my blood thinners. I personally think my blood should be checked more frequently. What is your opinion on this? 
    • clem19079
      clem19079 ellen68007

      Posted

      For me it's every 6 to 8 wks. It's a blood sample that gives you reassurance and if your blood cells increase your looking after mths before anything is done about it. In that time you could be going through all kinds of ailments unecessaryly. Point out your concerned about such a long gap between appointmens. Also your doctor may not be very well informed about what you could be going through, so take a list of the side effects you would rather avoid. Be good take care
    • ellen68007
      ellen68007 clem19079

      Posted

      Clem I am going to reply to you as I know my other friends will read this. My family Doctor just returned from a visit to India to see her family. I have given this a lot of thought. As much as two Doctors said my CBC should be done every six months I don't agree with this at all. A lot can happen in 6 months. It's my life and when I see her this week I am going to ask her to bump it up to once a month for now. As you I don't like needles BUT for my own peace of mind 6 months is not acceptable. Oh by the way how did you make out with your sleep problems?

      🇨🇦

    • clem19079
      clem19079 ellen68007

      Posted

      I see my doc through the week. I was given sleeping tablets for 7 days, after that I will be miraculously cured of insomnia. If I don't get any satisfaction then , I will just stop this drug. I have tried every trick in the book to get to sleep, nothing works. Who wants a life of exhaustion, 1 day blends into another I thank you you guys for your concern but this is not for me. I have had a total of 5 hours sleep since last Wednesday. It's a nightmare. I will let you know wen I see the quack what ever day it happens to be. As you say Ellen, it's my life my decision.
    • ellen68007
      ellen68007 clem19079

      Posted

      Yes Clem do keep us posted. To not get a good nights sleep just has to takes its toll on you. Horrible! I can't even begin to imagine how you much be feeling! I know if I have even one night to where I can't sleep I feel aweful the next day. It deprives the entire quality of the day time hrs. No ally if this does happen to me it's because I have something on my mind. Then the next day I barely can function. At least with me this is a rare happening. I really hope beyond words you get the right medication to help with your insomnia. Best of luck in getting this resolved.
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