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Hi everyone. New to this

Posted , 5 users are following.

pete42091
pete42091

Hi everyone

What do u do with the itching

The fatigue. The sleepless nights

Im sick of this already

And no one knows im suffering

1 like, 12 replies

12 Replies

  • bernard42121
    bernard42121 pete42091

    Posted

    Hello there - how long ago were you diagnosed with Polycythaemia?  I know it is an awfully daunting prospect of life with it but in time you will come to terms with it.  The itching is pretty grim, especially at night, but there are all sorts of creams and sprays you can get prescribed which can help.  The secret is to keep lubricated.

    The fatuigue is something you can do nothing about - you just have to give in to it when it comes over you.  You will find that there are times when you are relatively normal and others when you can't keep your eyes open.  The tiredness is always worse just before you may need another venesection.

    I agree with you that people cannot possibly understand, no matter how much you try to explain it to them.  I hae been diagnosed for over 2 years now and I still struggle with coping, but there are still good times!  Wish you luck

  • clem19079
    clem19079 pete42091

    Posted

    I take Ceterizine ( hayfever tablet) about 2 or 3 a day. I found the over the counter hayfever tablets are useless. They should work after a few hours.
    • pete42091
      pete42091 clem19079

      Posted

      Thx Clem.

      Do also have trouble sleeping.

      All These new things keep popping up.

      Im sick of all of it

      Hope ur doing better

    • clem19079
      clem19079 pete42091

      Posted

      Trial n error, all you can do is tell you focus about the persistent symptoms. Some will seem inocuos but over time the symptoms progress until your found a suitable medication that helps. The worst thing I suffered from apart from itching and restless leg , was the flu like symptoms I would get a lot of, that was pretty awful. I'm on I think three different kinds of pain relief for that. Though sometimes I can still feel as if it's about to return. If your new to the symptoms you will find it debilitating and depressing especially if folk look at you and you look fine.
  • 1958_pele
    1958_pele pete42091

    Posted

    Hi Pete sorry to hear you've joined our club! I was diagnosed over 2 1/2 years ago and still have bad nights panic attacks and itch like crazy. I was given a new drug to take last week called Cimetidine 1 X 400mg everyday along with aspirin and omeprazole it seems to be helping, will let u know after a few weeks. Been having ceterizine 4tabs a day think it made tge itching worse. This is my first response. Hope it's helped
  • james03855
    james03855 pete42091

    Posted

    Went through all the symptoms 4 years ago taking different antihistamine tablets and my gp prescribed dalmane. This was a year into the illness and it worked for me. It seems that what works for one person might not work for you. Don't have warm baths or showers at night as this sets off the itch. 
    • pete42091
      pete42091 james03855

      Posted

      Thx James

      I had no symptoms for 4 years after diagnosis. But now the itching. Cant sleep.

      From living a normal life to this

  • pete42091
    pete42091

    Posted

    My doc informs me that within 3 years there will be a pill to cure PV

    Cant wait. I will sell my house for it

    • pete42091
      pete42091

      Posted

      When I get this horrible fatigue. I just go to the other extreme and do a work out or keep more active. Ive notice it passes quicker
  • bernard42121
    bernard42121 pete42091

    Posted

    Just a tip for you - when you have a shower, only use warm water and then turn to cold just before you finish.  I find it shocks the system and alleviates a lot of the itchiness.
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