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Poly Vera

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frances20411
frances20411

I have not written a bio for sometime due to the fact that my HCT is

fairly under control.  All I did was basically limit my intake (Diet) to

less foods with iron e.g. red meats.  My platelet number is not affected

by this...(since that has a mind of its own) and runs near 550 up or down.

I was advised not to go over 700.  I believe that I should walk more and

drink more water (I am presently up to 50oz. per day).  Any suggestions???

1 like, 9 replies

9 Replies

  • peter98873
    peter98873 frances20411

    Posted

    Hello Frances.  Good that you are keeping on top of things.  Your handling of the situation seems very sensible.  Walking and diet can do nothing but good for your well-being.  Yes, I have always been properly advised to keep the platelets under control which as you mention, can be very variable.  My own situation shows that  I am now coping with myelo-fibrosis, an issue that can be linked to PV but it is nothing new, just something else to chug along with.  Seeing the haematologist next week for a discussion and check on events and where do we go from here etc!  I have lived with PV for many years and have learned to just keep things in context.  No change in treatment but Ruxolitinib certainly seems to have been beneficial. Best wishes for Xmas and 2016.
    • frances20411
      frances20411 peter98873

      Posted

      Thank you for your Christmas Wish and returning the same to you.

      I am not familiar with Ruxolitinib...give me some insight please.

      I live in America..where is your home???  I assume that your

      outlook on diet and walking etc. is beneficial.  Is this your program??

      Thank you for any input.

    • peter98873
      peter98873 frances20411

      Posted

      I am in UK and have several friends in USA.  To answer your queries.   Ruxolitinib is a new drug formulated in USA specifically to treatt PV.  It is available here in UK now through medical prescription only as it is still undergoing trials via hospitals.  Yes Frances, I have found keeping fit and healthy has kept me in fine shape generally.  I do try to do as much general exerciise as is possible within the realms of the medical edvise I receive.  It was one of the reasons I was adopted for the drug trial.  PV can be such a variable problem that no ttreatment is accurate for every sufferer.  I always played by the rule book as for treatment.  More is known about PV now than was availble in the past.  Thank you for your wishes..

      There one or two great web-sites on PV availkable on Google. 

  • harrishill1
    harrishill1 frances20411

    Posted

    Frances, I have polycythemia Vera. Therefore, I do not know what HCT means? IS it the name of your disease?

    Thanks, universes1

    • frances20411
      frances20411 harrishill1

      Posted

      When you have lab work which indicates the componets of ones

      blood..such as WBC (white blood count) etc.  HCT is part of that

      panel (Hamanicrit) this indicates to the nurse or doctor that you

      are or are not in need of a blood draw (phlebotomy).  Ususally a

      doctor will have a target number (in my case it is 44) and if the

      lab work shows more than 44 than one needs a phlebotomy.  Look

      it up on Google. My disease is still PV...you do have a doctor???

  • harrishill1
    harrishill1 frances20411

    Posted

    Hi Frances. Yes, I see my haematologist regularly. I always refer to my blood count as high red or high white count. I realized later, that you probably meant Hematocrit.

    The reason I refer to it as red or white blood count, is so that others know what I'm talking about. I actually got my blood count down considerably without knowing how it happened. My Haematologist told me. I then remembered I've been taking Burdock root capsuls, 6 per day. I think it helped my blood, although I was taking it for my arthritis. So, you never know. Hope you continue to do so well.

    universes1

    • frances20411
      frances20411 harrishill1

      Posted

      Thank you for the correction..spelling was not my top subject and the

      my dictionary did not have the correct spelling.  You are right on

      I got my blood count down by omitting red meat...simple but it does

      have an value.  I never heard ot Burdock..but then I don't have arthritis.  I am in remission of two different cancers..Thanks be to God.

      Merry Christmas.

  • harrishill1
    harrishill1 frances20411

    Posted

    I am so happy you are in remission. I've heard so many people are beating cancer nowdays. I thinkth e drugs are getting better and better. I have read that gene therapy is beginning to be used too. I think it will beu sed for arthritis and cancer. My rheumatoid is very bad in my hands right now. MY daughter is in her fifties and her hips are bad. I have been encouraging her toi try burdock root. However, if it keeps my blood at a lower level, I will be thrilled. So far, I'm just guessing it is the burdock root that is helping me. I will see on my next blood test and doctor visit. Good luck and have a very nice Christmas.

    universes1

     

    • frances20411
      frances20411 harrishill1

      Posted

      A bit more info about my particular cancers...the first was recognized in the first stage and taken care of by surgery...no chemo.  My second

      had a couple of sugeries (even though it was found again in the first stage) and BCG treatments wherein I am now in remission..

      I live in America and have chilldren in the same age bracket as your

      My advice for illness is to take charge immediately...I have found that those who go into denial and wait are the folks who run the gamlet.

      I do hope your rheumatoid leaves you soon.  Good luck!!

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