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polycythemia vera

Posted , 19 users are following.

bikerflorist
bikerflorist

i have been living with this for 2yrs now and i must say with no help from my doctors, i know its rare and not many women suffer with it but are there any on here ? am getting a bit desperate now feeling really un well 

thanks 

5 likes, 101 replies

101 Replies

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  • bordeauxgirl
    bordeauxgirl bikerflorist

    Posted

    Hello bikerflorist,

    Jusy like you I am new to PV diagnosed October14, I have also been told we girls are less likely to get PV than the males,Oh lucky us!

    but we still have it and  it's been a bit of a shock I know but we must remember our problem is not one of those huge cancers just long lasting slow ones, so I suppose we are the lucky one.

    I have been reading your blogs and feel sorry that your doctor hasn't helped you much but they are not the ones who know about it, it is the Hemo doctors you must question, I write down my Q's on a piece of paper before I see him . Last time he was trying to shake my hand goodby before I had sat down, so I said

    'hey hang on there I have Q's for you', it did bring him up short, so try that and be persistant ,it's your LIFE they are playing with and also read up everything you can on these such forums.I can't say I understand all the info but you soon get to understand more than you realise. I am blessed with a brilliant GP she follows up all my consultations, ask's her own Q's etc. INSIST on specialist help. Talk to your doc and let them know how you feel I am sure they don't always latch on to your true worries.

    I see the hemo's from Birmingham Hospital they have at least 6 specialists there and fly into my island every month , I am on Hydroxycarbermide 5 days a week, I have restless leg syndrome I take Ropinerole which keeps that under control, I also have various other probs. My PV kicked off with two TIA's, thats how they found PV after blood tests etc.Aneamic, high blood pressure,

    Dont get yourself too worried I think it makes our problem much worse than it could be. I am 70, sometimes I feel tired and the itching has been beyond belief, if you are taking any other meds check them out to see if your allergic to them ,my intence itching and horrendous rash was due to another med so watch out for that too. I am going on a bit but info shared is our weapon of choice. Hope you feel better soon God Bless

    Bordeauxgirl.

    • bikerflorist
      bikerflorist bordeauxgirl

      Posted

      thankyou so much for your reply, i am under a specialist consultant and he is not bothered at all its disgusting, i had blood letting 4 days ago been back today and another blood letting twm morning, because my pv is not through the jak 2 jean they say there is no funding for any meds for me so there keeping on with the blood letting untill levels and thickness of blood in down, its not really bothered me for 2 yrs its only these last 4 weeks with this bloody headache i cant function properly, am 49 and like you say women dont get it so much we are lucky lol and i do go in with ? but get no answers thats why today i have asked to be moved to someone else because i want and need answers, 

      thanks again for reply much appericated x

    • Rainbows_end
      Rainbows_end bordeauxgirl

      Posted

      Hi I am taking Cimetidine for the itching, the consultant recommended, it really helps, I know what you are talking about used to sit wrapped in a cold wet towel to try and calm it down. 

       

  • clem19079
    clem19079 bikerflorist

    Posted

    I really do hope you get satisfaction. My prayers are with you
    • james03855
      james03855 clem19079

      Posted

      How many anti histamine tablets do you take to keep itch in check
    • clem19079
      clem19079 james03855

      Posted

      I take 2 ceterizine every day. Though on occasion I have taken 3 or 4. The over the counter options are useless, I have tried them all. Been itching a bit regardless, I am now but it won't keep me awake, hopefully. All da best
  • harrishill1
    harrishill1 bikerflorist

    Posted

    Hi, bikerflorist. I don't understand. Your Hematologist shd be treating your PV. At first you shd be getting phlebotomy, (blood draws). Then, he shd prescrive an aspirin a day, and another meds to bring down the high blood count. I take Hydroxyurea. It helps prevent blood clots, thins the blood, etc. It has worked very well for me. My bloodcount is usually good right now. Have you had any of these treatments? harrishill
  • harrishill1
    harrishill1 bikerflorist

    Posted

    Hi bikerflorist. I noticed you said you aren't jak2 gene mutated. That means you are classified as Polycythemia Rubra Vera. That means your blood disease was caused by environment. It is a recognized disease, and shd be covered for meds, etc. Your GP shd have sent you to a hematologist who shd diagnose and treat you, as per meds, etc. The worry we all have, is the danger of getting blood clots if not treated properly with meds and or blood draws. Harrishill 
  • harrishill1
    harrishill1 bikerflorist

    Posted

    Hi bikerflorist. You say you are not jak2 gene mutation positive. That means you have Polycythemia Rubra Vera. Meaning your blood disease was caused by environment, etc. Your GP shd send you to a hematologist who shd diagnose your condition and prescribe the treatment and or meds. The disease is recognized and shd be paid by your health plan.It was my hematologist who diagnosed and treated me. The GP doesn;t know enough about it, as it is rare.

    Harrishill 

  • Rainbows_end
    Rainbows_end bikerflorist

    Posted

    I am female and have been dealing with PV for 2 years, I take 17  hydroxycarbamide 500 mg  per week, the worst side effects are tiredness but as these tablets seem to reduce your vitamin B 12 levels so I guess that is the reason, mouth ulcers and tongue ulcers are a problem but I take a B multi vitamin to help
    • james03855
      james03855 Rainbows_end

      Posted

      Have you told the consultant about the mouth ulcers and taking the b vitamins. As I understand it the ulcers are part of the PV condition and can be made worse by the medication. PV has many symptoms some that come and go. I took a hydro tablet ever day for three years and now am on five a week. As I posted earlier I push the tablet into glass of water and drink it over. A dissolving steroid tab seems to help heal mine. Good luck with you treatment.
    • Rainbows_end
      Rainbows_end james03855

      Posted

      My consultant was ok with the B vitamins was told to stay away from any vitamins with iron in. Will keep the steroid tablets in mind should it get any worse, thanks
    • james03855
      james03855 Rainbows_end

      Posted

      Hydrocortisone Buccal 2.5mg are what I take when my ulcers flare up. I hope that you are feeling better these days. 
  • alison_29881
    alison_29881 bikerflorist

    Posted

    Hi I'm a 54 year old female, SW England. I have Parkinsons as well, a disease which also affects more men - here's nothing like being told that to rob you of your femininity!  I thought I had no symptoms, but I've had migraines for years.  I also thought the sweating and restless legs were either menopause and/or Parkinsons.  I'm at the "it's not fair" stage, as I've never smoked, nor drunk to excess, have tried to eat healthily, moderate amount of exercise and never been overweight (not much anyway). So where does this JAK 2 gene come from??  Wishing you well, feel free to have a moan - it helps to talk to others with the same problems.
    • clem19079
      clem19079 alison_29881

      Posted

      No idea about the genes source . Though I take quinine 300mg for restless leg. The drug apparently has its risks though when having to many nights of not getting any sleep day or nite , I wouldn't care about the risks. Check them out with your GP to be sure their safe. Before I took quinine I bought bottles of scheppes tonic water, I drank a bottle a day. Stinks but it works. Sorry about the parkinsons hope symptoms are mild and stay that way.
    • alison_29881
      alison_29881 clem19079

      Posted

      Hi Clem. I take Ropinirole for Parkinsons which is also the drug for restless legs and that seems to help.  My drink of choice for years has been lime cordial and schweppes tonic!  Symptoms of Parkinsons were really bad last year - my whole body slowed up - like wading through treacle.  Now on Levodopa which has vastly improved my quality of life, but sadly only lasts a few years.  Have taken up gym 3-4 times a week which also helps.  Very costly this illness lark  >:-(  Alison
    • clem19079
      clem19079 alison_29881

      Posted

      Lime cordial, didn't no about that 1.I took Ropinrole it was useless. I bought my self an expensive pair of trainers so that I can go for long walks around various parts of irish coast, when weather cools down. Looking forward to that.
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