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Life with Polycythaemia

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UrosD
UrosD

Hello,

I was diagnosed with PV a 15 days  ago.

I am 39 years old.My highest values before phlebotomy ETC 7.7 (3.9-6.0)

HGB 197 (120-180) HCT 0.58 (0.32-0.52)

I did a lot of analysis and results are:

EPO is low

JAK2 mutacion ( in January negative - In Marth positive but i did analysis in diferent lab

BCR-ABL  Negative

APCR-V  Low

Bone marrow biopsy points that I have normal red blood cells but problem with Essential trombocitoza ???

After 4 phlebotomy ( 4x450ml in 35 days) my iron level is 3.5.And doctor said to me that I must get use to live with low iron.I feel very exhausted.....

The finaly dg is probably PV with apcr-v problem.(tendency to thrombosis).My therapy now is aspirin 100mg and phlebotomy when is necessary (when HCT as abov 46).

Can you tell me your experience with PV?( do you have a normal life,do you fly by airplane,what kind of food do you eat,are you training....etc)

Best regards,

Uros

 

0 likes, 11 replies

11 Replies

  • marie-jos6518
    marie-jos6518 UrosD

    Posted

    Hello Uros,

    Your numbers are a lot lire mine when I got diagnosed. After many phlebotomias, my iron level is also very low and my platelets much too high. Like you I'm exausted because of the low iron.

    My hematologist doesn't want me to get any more phlebotomias because my platelets are so high, so he will be starting me on somme meds, not sure which, but, on my last appointment, this morning he leans towards Jakafi. 

    I am looking forward for the meds to stabilize everything so I can travel again. For now, my travel insurance won't cover me for anything related to pv. My dr told me it would be allright to fly as long as I stand up and move regularly and take my Aspirin, I started training on a treadmill everyday and it energizes me. I walk and take the stairs as often as possible. 

    I hope I answered your questions.

    Marie

    • UrosD
      UrosD marie-jos6518

      Posted

      Hello Marie,

      thank you for your respond.

      Can you please tell me how old are you and what kind off medicine you take?

      I am 39  and i am still confuse.

      I do not smoke...i do not drink....and some how i have PV.

      My doctor think phlebotomy will do the work.She prescribe me easy walks...swimming....bicycle and most importmant no stress!!

    • marie-jos6518
      marie-jos6518 UrosD

      Posted

      Hello,

      I am 52 and, like you, never smoked or drink. From what I understand, pv is not related to bad habits, if it is, it's called secondary polycythemia. I suspect I have had PV for a long time ( diagnosed last December), I remember three years ago the itching and swelling in my feet and my blood counts where often high since 2008 and my general practitioner couldn't tell why.

      For now, I only take Aspirin, but it should change in a couple of weeks when I see my dr again. My platelets are over 1000, which puts me at risk of thrombosis.

      Marie

    • UrosD
      UrosD marie-jos6518

      Posted

      Hello again,

      ​My doctor told me , all that conditions are myeloproliferative disease and they treated the same way.Low dose of aspirin and phlebotomy.

      ​But she also told me that people older then 55 should take medicine.

      ​Tell me one thing,have you done an analysis of thrombophilia?

      ​I think its called FV Leiden  and APCR.That is a genetic test to see if you have genetic predisposition for thrombosis.

      ​I inherited Leiden V from my father and because of that my hematocrit level must be between 0,45-0,46.

       

    • marie-jos6518
      marie-jos6518 UrosD

      Posted

      Hello,

      I didn't have the test, but I suppose I don't have the gene since no one in my family had any thrombosis.

      You didn't mention how high your platelets are? That is the reason, not my age, that my dr wants me to begin taking medication. The phlebotomies tend to lower iron and the lack of iron pushes the platelets up. That is what I understand. I hope that it will help with the iron because, I feel tired most of the time.

      Marie

    • UrosD
      UrosD marie-jos6518

      Posted

      Hello Marie,

      ​my level of platelets is between380-470 but upper level is 450. My platelets are normal for now, my primary problem ih high level of erytrocitosys and level of hematocrit. My hematocrit withinor respect the trombophilija have to keep it on lower level. About iron hmmmm I am also tired most of the time but I work 8 hours and travel to my work about 1,5h and back 1,5h that is 11 hours on day.....I will continue to fight....

  • Scotslassie
    Scotslassie UrosD

    Posted

    Hi from Australia,

    I was diagnosed 5 years ago Jak2 neg.

    I am om Hydrea and baby aspirin

    Apart from the intial phlebotomies I only have the occasional one.

    I am always tired.

    Never let a doctor put you on iron... One did and nearly killed me!

    • UrosD
      UrosD Scotslassie

      Posted

      Hi from Serbia and thank you for your answer.

      Can you tell me how old are you when you got diagnosed PV?

  • Zapamania
    Zapamania UrosD

    Posted

    Hi  I was dx with Pv about 5 yrs ago.  My platelets then we're 490.  I was sent to see a hematologist and he did a few phlebotomies and my platelets finally rose to 1 million. I found an MPN specialist who I now see.  I had a bone marrow biopsy.  I have now been on Jakafi for 6 months now.  My platelets are in the 500-600 range and my hematocrit is 37.  I feel tired sometimes.  I've changed my diet and have eliminated meat and foods high in iron.  Google foods high in heme and try and follow that.  Good luck. Zap

    • UrosD
      UrosD Zapamania

      Posted

      Hello Zapamania,

      thank you for your respond.

      Can you please tell me how old are you and what kind of food you eat?

    • Zapamania
      Zapamania UrosD

      Posted

      Hi Uros I'm 64 soon to be 65.  My food intake is erratic.  I eat mostly pasta, fish & some chicken.  I know I should eat more veggies but I'm not crazy about them.  I drink 6-8 glasses of water every day.  No soda ever.  No alcohol.  No beans, spinach or anything high in iron.  I was recently told by my doc to take 2000 units of vitamin D.  Hope this helps.  I've read pomergranite juice is good for us.  I'm going to try that.  Hope this helps.  Zap

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