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Symptoms of PV?

Posted , 6 users are following.

rayrayfl
rayrayfl

Hi. I was wondering if any of you have some of these symptoms and if they are related to PV? I have had for some time now shortness of breath, a sort throat and lumps on my tongue. Ive been fully checked out for the shortness of breath and they cant cmoe up with anything, but said maybe it was because my platelet count was high?

I have an appointment with the ENT specialist for my throat anf tongue, but just starting to sonder if it could be caused by PV.

Thanks for any input you may have!

0 likes, 10 replies

10 Replies

  • suki8786
    suki8786 rayrayfl

    Posted

    Hi, I used to suffer alot from shortness of breath before I was diagnosed with PV, I thought it was aniexty but my symptoms reduced dramatically once I started on venesections. I don't suffer as much as I used to. I do pick up germs alot now and in the last month I have had a sore throat for a few weeks but not generally if I'm honest.

    Suki

  • keith28441
    keith28441 rayrayfl

    Posted

    Hello Ray

    I did have shortness of breath prior to being diagnosed with PRV and this is a symptom. You mention that your platelet count is high but is or has your Red Blood Cells, Haematocrit or Haemoglobin levels ever been high? If not, then it’s unlikely you would have Polycythaemia. High platelets however, can be associated with Essential Thrombocythaemia, another of the Myeloproliferative Neoplasms but high platelets can be caused by many other factors as well.

    Kind regards

    Keith  

    • rayrayfl
      rayrayfl keith28441

      Posted

      Hi Keith.

      I have been officially diagnosed with PV. Currently only my platelets and RBC are high. The others are under control. I have had a few months of them taking my blood but now I am on the meds. Just curious if these symptoms could be connected to the disease. I know it's not the meds, be the symptoms predate me starting the medicine...

    • keith28441
      keith28441 rayrayfl

      Posted

      Hi Ray

      Sorry, didn’t realise you had already been diagnosed with PV. I can only reiterate that I did experience shortness of breath prior to being diagnosed with primary prv but this abated following treatment. I too have a high platelet count (currently 708K) and have subsequently been diagnosed with secondary thrombocytosis as well, which as you may know happens in 50% of pv patients. As a result, my Haematologist has just put me on Hydroxycarbamide in order to try and bring my platelets down. It was either this or interferon alpha injections. Either way and as Peter suggests, I would see your Haematologist about the breathlessness and see what he or she has to say.

      Sorry, I can’t be of more help.

      Kind regards

      Keith

  • peter98873
    peter98873 rayrayfl

    Posted

    If you feel you have PV then you should see a haematologist a.s.a.p and get an official diagnosis.  The symptoms you describe can be associated with other illnesses so you need to erase these from the equation.  .et us hope PV is not your problem
    • rayrayfl
      rayrayfl peter98873

      Posted

      Oh unfortunately I have been diagnosed with PV. Just not sure if these random symptoms are connected to the disease. The doc said maybe but was wondering about actual PV sufferers...
    • peter98873
      peter98873 rayrayfl

      Posted

      The symptoms of PV can and do vary between patients so not all sufferers are affected in the same way.  You need to discuss this with your Haematologist who should be able to put your mind at rest.  PV symptoms can change over time so a regular testing is important for you to get the correct analysis for you to receive the right treatment that suits your particular  needs.  It is a very rare condition and consequently it needs a Haematologists experience and expertise to get the right conclusion. Stay positive and you will find things settle down.  Sorry about the diagnosis but the disease can be effectively treated, although there is no cure yet available. Good luck.

       

  • peter98873
    peter98873 rayrayfl

    Posted

    There is one thing that perhaps you may not be aware of.  Rare medical conditions (and often others) are frequently the source of internal discussions by the hospital specialists deaing with their cases, particularly within the UK.  Generally the outcome of these discussions will filter down to your GP but you can rest assured that each individual patients problem will receive some excellent scrutiny and the advice you are ultimately given or treatment offered will have been fully considered.  This has happened in my particular case and doubtless I have benefitted from their efforts.  So whatever diagnosis you are given will not necessarily be from one expert but from other sources too.  Which can only be to ones advantage.  So it pays to listen to their advice really.  Best wishes.
  • Zapamania
    Zapamania rayrayfl

    Posted

    Hi Ray I have been dx with Pv for 4 yrs now.  I just started Jakafi a little over a month ago.  None of the symptoms you have described I have had.  I did read that Jakafi could cause a sore throat but I don't know what meds you're on.  I think an ENT wouldn't be a bad idea.  Good luck. Linda

  • lijuan7002
    lijuan7002 rayrayfl

    Posted

    Hi You can view the latest med information about PV from the 58th ASH Annual Meeting & Exposition.

    In this study, the new drug(P1101/AOP2014) have lower side effects than HU

    and I believe that PV will be Incurable in the furture !!!

    And you can read the reference as follows:

    https://[b]ash.confex.com/ash/2016/webprogram/Paper96208[b].html

    Best wishes and be well.

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