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Have PV, but no symptoms

Posted , 7 users are following.

mark89625
mark89625

I have PV and have been diagnosed now for approximately 12 years, but I have never had any symptoms. Is this normal. I am 47. I am due to see my consultant today. I look at the symptoms that I could have for example:

Itchy skin

Headaches

tiredness

blurred vision

The only one I do get sometimes is tiredness, but I put that down to working on a computer screen for 8 hours a day.

I am able to go out and run and do exercise. I am a little over weight, but not sure if that makes a difference

0 likes, 14 replies

14 Replies

  • ItchyChris
    ItchyChris mark89625

    Posted

    You are very lucky to not have itchy skin, it used to drive me to distraction, not to mention PUVA treatment!
  • Zapamania
    Zapamania mark89625

    Posted

    Hi Mark I had Pv for who knows how long and was totally asymptomatic.  My Pv was found incidentally on a cbc.  My platelets @ that time were 490.  I didn't have any symptoms for a long time after that except for itching after a shower. As my platelets crept up, so did the symptoms.  I am now on Jakafi.  Hopefully you'll stay the way you are without symptoms.  Just make sure your dr keeps an eye on your hematocrit.  Good luck.   Zap

  • colin89866
    colin89866 mark89625

    Posted

    I was diagnosed over 15 years ago and like you I have never experienced any symptoms.

    For the fist 10 years or so I was having three monthle venesections but they put me on Hydroxycarbamide for the last five years and apart from the odd mouth ulcer ( some really bad ) I've not had any adverse reactions to taking it.

    Like you, I get extremely tired at times and also worked in front of a computer screen, but I have now been retired for the last 14 months ( 66 ) so I have plenty of time for a snooze now and then :-)

    • peter98873
      peter98873 colin89866

      Posted

      Hello Colin,

      It may be that you will not be too affected by Hydroxycarbamide but do keep a check on any symptoms that may arise.  I have never received venesections so cannot comment on that factor really but I did take Hydroxy for a long period but this ultimately proved just too harsh for me to continue with.  I now take another drug which is more amenable.  I don't feel the computer is too much of a problem for you but tiredness is a known symptom of PV.  Suggest you discuss this with your haematologist.

      Best wishes and happy dreams.

      Peter.

    • colin89866
      colin89866 peter98873

      Posted

      What is your current med ?   I was promised Ruxolitinib as soon as it was approved for use in the UK but haven't heard any more about it !

       

    • peter98873
      peter98873 colin89866

      Posted

      Hi Colin,

      That is what I take, Ruxolitinib.  It was prescribed for me after I was forced to discontinue Hydroxycarbamide.  I had participated in the research trial of Ruxolitinib and the Haematologist had to get authorisation for me to be prescribed with the new drug as it was still on research.  It is very expensive in whatever country one resides.  It is not available yet for general usage.

      Peter.

  • peter98873
    peter98873 mark89625

    Posted

    Hi Mark,

    The absence of symptoms is far from unusual.  PV can affect you in many small ways

    without causing distress but I would suggest that your tiredness is a very possible result of the PV.  It is a variable disorder that affects people differently as we are not the same biologically.  Like you, I was very fit and healthy and could do anything I wanted but once I was diagnosed with the disorder it was apparent that I had in fact been very mildly affected for some years previously.  I had simply ignored these as of no significance.  I hope that your symptoms do not advance.  Yes, you will need to maintain regular blood tests which should give you some idea of just where you stand.   Your weight is not a factor of PV diagnosis but does come into the reckoning if any treatment is considered.  As you are still considered comparatively young it may be a long time before anything really bothers you.  Keep well and enjoy life.

    Peter.

  • jim27451
    jim27451 mark89625

    Posted

    Hi, I am a 70 year old male and have just joined think site today after been diagnosed about six months ago with PRV. I didn't display any of the classic symptoms apart from night sweats. It was only picked up on a full blood count test for something else. My doctor's practice is in rural Essex in the UK and neither of the doctors, one German and one Brit, had come across polycythemia in any of its forms. My specialist treatment started within days with weekly venesection for the first month and these are now roughly at bi monthly intervals. I am on hydroxycarbamide and had no side effects until a few days ago when I had lots of intense itching especially in the small of my back. This lasted a few hours after taking the capsule.I stopped taking the hydroxycarbamide? the following day and there was no itching. I trawled the 'net and read that Ranitidine (used for indigestion etc) is sometimes prescribed and I bought a couple of packs. The following day I swallow a couple after taking my capsule and the itching was there but was no problem. I will be seeing my specialist next week and will tell him about the itching and the Ranitidine. I have regular blood tests (one tomorrow) but do not concern myself with the readings and results. The specialists have many years of training and practice under their belts and I am happy for them to tell me what to do and do the best for me. For most of my working life I had a very stressful and dangerous job and learnt a to relax and chill as much as practical. I don't want to worry that this reading is too high or is creeping up etc. I just want to a lie back and make the a best of the rest of my life with the least worry. I have also recently been also diagnosed with spondylosis and take my word you wouldn't take the up as a hobby as it is VERY painful. I visited a local Chinese doctor who specialises in acupuncture and massage. I told of the diagnosis but didn't elaborate any further. He asked me a few questions and got to work with his needles and then some massage. I can only describe the improvement as miraculous and am thinking of letting his needles have a go and see if they have any effect on my PRV. Have any readers tried Chinese medicine/acupuncture in relation to PRV?

    .

    • peter98873
      peter98873 jim27451

      Posted

      Hello Jim,  -  The current thinking with PRV and age is that more people are being diagnosed later in life due to the extended life span these days.  It is suggested that  PV in each of its forms, is generally less severe than it possibly might have been if discovered earlier at a younger age.  In view of this it may be you will not become too troubled by any symptoms.  As you will probably know, PV is a very rare blood disorder without a current cure available.  Not too many people are around with the disease to compare with.  There may be someone who has tried acupuncture treatment that can advise you.  I think most medics would say if it works for you give it a try.  Looking at the basis of PV where a defective stem cell has been isolated as a predominant cause of the disorder it will be quite something if needle treatment turns up as a successful treatment.  Let us know how you get on.  PV is usually a slow progress disorder and will require future specialist supervision.  Could be that you will not have too many problems to contend with.  Stay fit.

      Peter.

    • Zapamania
      Zapamania jim27451

      Posted

      Hi Jim there is a combo that a lot of people take for the itching.  You're 1/2 way there.  It's Zantac (ranitidine & Zyrtec) together.  Both Otc. That's over the counter, no script needed. It's very popular with pv people.  I have never taken it, but if I itch, I will.  Good luck. Zap

  • PO32_6AP
    PO32_6AP mark89625

    Posted

    Hi I have had PV for five years now and I don't get any symptoms hardly anyway, the odd itch, but I wonder sometimes if I really have it ! But my blood tests show otherwise. I have three monthly blood tests with a telephone call from my consultant every other time.

    I am on Hydroxy 2 per day and aspirin with a vienession a 3/4 times a year to keep my hematocrit at a good level.

    The only other problem I have is with catarrh usually after having a cereal so I think I will change and have a boiled egg instead. I do adhere to quite a strict diet i.e. Hardly any red meat, as we don't want to make any more red blood cells do we ? Also I have no alcohol the Doctors haven't said about this but I have read this improves things so maybe that's why I don't any any symptoms. I don't even feel tired, I am an active 77 year old playing bowls, collecting grand children a few times a week to and from school, gardening etc always busy with several foreign holidays Per year enjoy your life all of you xxxxxxx

    • peter98873
      peter98873 PO32_6AP

      Posted

      Hi PO32,

      Pompey is it ?  You are a classic example of all I usually say about PV.

      This disorder is very variable amongst patients and each is affected in different ways.  I note you are having venesections 3 - 4 times annually.  I have never been subjected to this procedure in all the years I have been treated for PV.  Your Hydroxy dosage is quite normal in your situation and quite frankly as you don't diet I see no reason why you should not eat and drink (moderately) as you desire.  Quite a few patients do not suffer unwelcome PV symptoms so that should not bother you any.  We are all different individuals and each of us is affected differently by illnesses, so I'd say just keep on as you are with your doctor's checks and enjoy life as you can.  Good luck.

      Peter.

    • PO32_6AP
      PO32_6AP peter98873

      Posted

      Isle of Wight actually ! I have tried a white wine but next day I feel

      Lethargic, red wine causes me to have an awful allergy bright red rash in places on my body , so I suppose I feel better abstaining!

    • peter98873
      peter98873 PO32_6AP

      Posted

      IOW you say.  Yes I know it well.  If things don't agree with you then you are right to leave them alone.   No point in giving yourself problems.  Don't be put off from trying things if you fancy them but you seem sensible enough to 

      know this anyway.  Lethargy and tiredness are known effects of PV but these can be controlled with the appropriate treatment.  Wish you well.

      Peter.

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