No patterns to PV?

Hi Guys, just wondered if you all find that there are no patterns to the way PV behaves? I was diagnosed in 2012 and after 3 initial venesections close together settled into 1 every 3-4 months. Then last year I had no venesections from May until February this year and thought great - things must be stablising. However since May I have had 2 venesections and probably another 1 due this week - blood tests on Wednesday. My visits to haematology were reduced from 3 months to 6 months to a year but I guess they will be increasing again soon!

I always wonder, like I am sure everyone does, if such changes mean my PV is accelerating or changing for the worse! Does everyone else experience these inconsistencies?

Kind regards Aime

8 Replies

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  • Hi Aime

    I have had PV for nearly 10 years and often go a year between venesections. I take aspirin only, but will be starting hydroxie or interferon in November due to other blood counts, htc is 43. something. I do not think that a high htc count alone points to a an acceleration of your PV but I know and sympathise with you that changes can be frightening, try not to worry and tell your consultant your fears on your next appointment.

    Take care! Mel x

  • Hi Mel

    Thank you, just having little panic! Kind regards Aime x

  • Any time, I was having mt own a couple of weeks ago. x

  • I think you are right ,,there is no definite pattern ,,but I know I feel much worse when I have stress in my life .i need to take life slower now days .. Twinkly x

  • Yes that's a good point about stress Twinkly - thank you Aime x

  • I have had PV for 6 years and initially had venesevtions every few months then they went every 6 months and then once a year. Haven't had one now for 14 months. I thought blood counts would go up at a uniform rate. When I asked my haematologist why my bloods weren't going up, she said she didn't know. Have next 3 monthly visit tomorrow and we'll see if they have gone up. Feel just as bad, fatigue with blood ok as I did when bloods were on the rise. Marc.

  • Hi Mark382, I know sometimes I feel just as bad when my hct is below .45. Feeling pretty rough just now as I had another shoulder op last week plus got wee grandson's cold. Blood tests tomorrow as my hct was at .45 just before my op but the medics wanted to see what it was after the op before they took off their pinta!

    Thinking about you, take care Aime x

  • Aime

    its unlikely its a sign of your PV progressing, if you are newly diagnosed and then did not need a venisection for such a long time after the initial venisections then its unlikely your PV is changing/progressing that quick. Its probably more to do with the amount of iron in your system. When they venisect you it reduces your iron levels dramatically this means you can not make red blood cells so easily as PV feeds on iron. Then as time goes by the iron builds up again and once this happens you will start more RBC production hence Hct rises. In my case if my iron is low enough ie MCV say 59 my hct hardly rises at all and I can go 3 or 4 months with no venisection, however if increase my iron intake and my MCV rises to around 63 my Hct will rise quickly and I may need two or three venisections to get the iron down again and then I am fine for quite a long time, that may be what is happening with you. I get monthly blood tests and have small 125ml venisections when I need them to try and keep counts constant. Most of the PV veterans I know get regular blood tests and keep a excel spreadsheets of their counts

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