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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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  • clem19079
    clem19079 bikerflorist

    Posted

    Ceterizine is a hayfever tablet. I take 2 per day. Helps keep the itching at bay. I also take gabardine on for nerve pain. Get that pretty much all over
    • james03855
      james03855 clem19079

      Posted

      I take neo Claritin one tab and was started on neurontin(gabapentin) last week we will see how they do and keep the best side out. One funny thing though is the number of people that tell me how well I look.
    • clem19079
      clem19079 james03855

      Posted

      Lol me n all. we have a saying at irish wakes. He really does look more like himself. Believe it or not people here say that

  • james03855
    james03855 bikerflorist

    Posted

    I think that harrishill--- is a female on one of the other threads that's from memory not always right
  • monneywese
    monneywese bikerflorist

    Posted

    Hi - That's horrible.  I did not read all the replies, but have you been able to see a consultant?  What did consultant recommend?  Hope I'm not covering ground others have before.

    M

    • clem19079
      clem19079 monneywese

      Posted

      Been seeing consultant at least 25yrs I been told that much I can't remember. Took her 25yrs to realise it's a genitic strain I have. I don't mind answering what specifically do you want to know?
  • harrishill1
    harrishill1 bikerflorist

    Posted

    Hi bikerflorist. I don't understand. If you got diagnosed by a hematologist, he shd have started treatment. At first, they usually do phlebotomies, (blood draws). Then they later on may give meds. I was prescribed an aspirin a day, then also Hydroxyurea, which works well to control the high red count. It also thins the blood and prevents blood clots. It also lowers the immune system a little. I've been diagnosed for three years, and feel good most of the time. I do sometimes need a nap, but  I walk an hour each day, then workout at curves, and weed the flowers, etc. I am 73 yrs old. I am wondering what you mean by your doctor not helping?

    harrishill 

    • clem19079
      clem19079 harrishill1

      Posted

      My consultant knew I had a phobia of needles, but still persisted in venesection me we in we out for over 20yrs b4 offering me drugs. Their strange beasts.
    • bikerflorist
      bikerflorist harrishill1

      Posted

      hi thanks for your reply

      i only see my consulant every 4 months, which only today i have found out this is way to long, this is why ive had this banging head for 4 weeks they have left me that long my blood levels were through the roof and my blood thickness was as well so had blood letting 4 days ago and then another twm morning, my gp is now putting a letter of complant in against my consultant, so hope this kicks some ass 

      thanks again so much for reply it does help x

    • clem19079
      clem19079 bikerflorist

      Posted

      Ask your consultant to give you a letter recommending what medication you should be on. If he she refuses then ask him/her what you should be take. Armed with that information contact your gp. my surgery gives me my medication at the behest of my consultant. 75mg asprin and ceteriZine ( for itching you can buy over counter until your sorted.. If you consultant can't at least give you a prescription for those those ask if they would be recommended. Hydroxycaramide Is definitely what you should be on. If you don't get satisfaction contact you local MP. I feel for you.
    • james03855
      james03855 clem19079

      Posted

      I think that my consultant would have me on warfarin and hydra urea. When I developed a DVT I had the lot. Venesection every week, innohep, and then when I stopped the innohep I was on 5mg of warfarin. After 3 months they put me on aspirin. Within two weeks I had another DVT saw my Gp and had an immediate appointment with the consultant back on innohep and then the warfarin. 
    • clem19079
      clem19079 james03855

      Posted

      Warfrin dodgy I refused it. I remember a Scottish mp was on it. He banged his head and bleed to death on steps of council offices. Stuck me that did
    • james03855
      james03855 clem19079

      Posted

      I have Weekly INR test To monitor it. There Is a new drug that doesn't need to be monitored. The aspirin was no good to me. 
    • bikerflorist
      bikerflorist clem19079

      Posted

      hi clem got told today there is no funding for any meds for me because am not jak 2 gene related and not happy 
    • james03855
      james03855 bikerflorist

      Posted

      The Vera part means it is faulty Jak 2 gene causing the high blood count. Polycythemia without Vera at the end means some underlying cause and if it is corrected then the Polycythemia can disappear but read up on it on that site

      http://www.medicinenet.com/polycythemia_high_red_blood_cell_count/article.htm

      https://patient.info/health/polycythaemia-rubra-vera-leaflet

      Emis Moderator comment: I have added the direct link quoted and also added the link to our article on this which is linked in the right sidebar of this page.

    • james03855
      james03855 bikerflorist

      Posted

      My reply is awaiting moderation but suffice to say a second opinion would a good idea if the figures you posted are correct then they are high I hope the moderator allows the post 
    • clem19079
      clem19079 james03855

      Posted

      I have been educated. I never want to no about my condition until something happens. I know I'm being looked after. smile
    • james03855
      james03855 clem19079

      Posted

      I would agree with that but missing a high blood count 6weeks before I suffered a Dvt that took them a week to diagnose. I went to surgery Mon and was told that it was phlebitis back on Thursday and they did a D dimmer blood test at 10 in the morning and at4.30 I got telephone call to come to the surgery pick up a letter and go immediately to A and E. So I like to make sure that they don't make any more. 
    • clem19079
      clem19079 james03855

      Posted

      In Belfast we are blessed with good health care if ya can't get treatment up north so there Ireland has state of the art care. And and who has dual passport both British and iris can take advantage. Anyone with sense over here would have dual passports anyway. Hope your keeping well.
    • james03855
      james03855 clem19079

      Posted

      I'm not doing to badly at the moment will get quinine tablets today. The doc who missed the high red cell count has left and the young replacement is very attentive to me. When I had 2nd clot in leg attended the GP in the morn at 10am and he had appointment for 2pm with consultant.

    • james03855
      james03855 clem19079

      Posted

      Sorry. In last meant to ask how you were and wish you well
    • clem19079
      clem19079 james03855

      Posted

      Hope at least restless soothes. If I take quinine early in the evening I start to get symptoms around dawn. If I take them at midnight I have weird dreams. Wish ya well.
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