JAK2 negative - advice welcome

Polycythemia Vera
#1

Hello, I am new here. I am a 50 year old white female.

I was found to have high haemocrit as part of a routine full blood count. That was 4 years ago. JAK2 tests were negative so I was told it could not be PV. My erythropoetin (sp???) levels are only just within the low end of the normal range so was told it could not be an erythro producing tumour. I do not live at altitude (never have) and there is no family history of high iron levels. I don’t smoke or drink alcohol (never have).

I live in a rural part of Scotland so am quite isolated. I see a haematologist every three months and have a phlebotomy every month. Usually one unit but sometimes two or even three. My haemocrit is around 50% with this number of venesections. They would like it lower but that just hasn’t happened. My WBC is low and the reason is probably because of the amount of blood taken.

My liver seems normal on the scans. I had my spleen removed in 2002 as part of surgery for an adrenal tumour. The spleen was deformed, small and multi-nodular but the spleen tissue was fine on path examination.

I have never met anyone else with this.

Thanks for listening,

Patchwitch

#2

Hi there

Only just joined this group but diagnosed with polycthemia Nov 2007 after a mild stroke. My history very similar to yours raised Hb and HCt over 5.0. reg venesection neg Jak 2, but also no risk factors for primary type. They have just done test for Jak 2 exon 12. Was having phlebs 3 monthly but now down to 4-6 weekly as Hb and HCt starting to bounce back at faster rate. I am a 46 year old mum and midwife and live in Oxford UK. I have yet to meet anyone else with this condition and so pleased i have found this site.

I have read that not all PRV patients are Jak2 pos and i am also trying to find out more about it. Seeing consultant on May 1st so will ask for more info on this.

#3

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-----Original Message-----
From: HILS [mailto:polycythemia-vera-fft-11801@lists.fireflyhealth.org]=20
Sent: Tuesday, April 07, 2009 4:37 PM
To: danix@mcgrew-fam.net
Subject: Re: [polycythemia-vera] JAK2 negative - advice welcome