Polycythemia Jak2 negative

Hi all

I hope you all had a good Xmas so far and I wish you all a Happy New Year

I had my results from the bone marrow biopsy last week and it was confirmed that there were no signs of leukaemia which was a great result. My consultant was concerned with the high level of red blood cells in my bone marrow for someone of my age however he is awaiting more blood test results. He has confirmed that I am actually only one in a million of those who suffer from my form of Jak2 so its very rare. :-(

I definitely am a lot happier now I have moved consultants and he is very knowledgeable around Polycythemeia. He has stated that he wants me to have a CT Scan next which he has organised for the New Year. The only medication I am required to take is an aspirin a day and my Venussections will be increased until they are happy that my readings are dropping as at the moment they are quite high all the time. 0.53

There was a lot more to take in on the day so I wish I recorded it but the good news is that he wants to keep me as a patient and as soon as there are more available tests he will be doing them on me.


Noel :-)

9 Replies

  • congrats after the good results

  • Thats wonderful i am also pv jak2 positive and the same treatment as you it gets better as you go along and start to understand everything lots of strength and hugs

  • I have pv and am JAK 2 negative. My only treatment like you is an aspirin a day and venesections. I was diagnosed 8 years ago. Still have 3 or 4 monthly appointments. Venesections are not as often now - 2 or 3 a year now all is under control. Glad you found a good haematologist.

  • Good news there Noel. . Stay positive. Sounds like you got a 'Gem of a Hem' there which can be half the battle and make a huge difference to your overall experience and subsequent treatments. These are relatively rare conditions.

    Happy New Year to you also.

    Cheers Chris

  • Hello Noel, what marvellous news, you must be so relieved to know that you haven't got leukaemia. Your haematologist sounds great, as Chris says, it makes such a difference when you have a lot of confidence in your haematologist. Let us know how you get on. Best wishes, Maz x

  • Good news!

  • So pleased for you - relax now and enjoy the New Year festivities.

  • I would like to know more about what you find out with your condition. I'm jak2 negative also. I have had a bone marrow biopsy and they classified me as having secondary polycythemia. I take aspirin and have occasional phlebotomies to manage mine. I have had this since my late teens I am now 40. Good luck on your test! I hope they figure something out.

  • Congratulations! Knowledge is power. I am PV JAK2 neg as well, and have been 12 years now. Sure helps to have a hematologist that can/will relate to you, understand, have knowledge of what you are dealing with. Good luck!


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