JAK2+that its primary & secondary PV plus pseudo

[Beingpositive121]

I was diagnosed with JAK2 + PV 4 weeks ago after having a heart attack. My Haemoglobin is 169 and Haematocrit is 54. I'm starting 1 -2 venesections a week. I've been really anxious of having another heart attack or stroke until my levels come down. Has anyone had levels this high?

[friendofpiglet]

Oh yes! At diagnosis my HCT was .598 and HG 189.

Venesections and hydroxycarbamide brought them down to acceptable levels pretty rapidly.

5 years ago that was. Mostly stable now but still elect for a venesection every so often.

Andy

[mark382]

My haematoligist uses shortened numbers. I was diagnosed 11 years ago on a random blood test. From memory I think the figures were 56 hct and 19 hg. As I say she uses shorted numbers. All been good since then. 3 monthly appointments and venesection as and when 3 to 6 a year. Also on aspirin.

[hunter5582]

It is scary, but the good news is that the venesections will bring the HCT under control. Coupled with medications when needed, the PV can usually be managed successfully for a long time. There is a balancing act to be maintained as the venesections will make you iron-deficient, but that is its goal. That keeps the erythrocyte levels down. You just do not want to become so anemic that it makes you dysfunctional.

Meanwhile, hang in there. You should see improvement soon. FYI - I was diagnosed with a MPN over 30 years ago. The ET progressed to PV about 6 years ago. Still alive and kicking!

All the best.

[Manouche]

My HCT was 65.9 in September and the hgb was 21 on a routine blood test. I was diagnosed PV the day after. It took 9 phlebotomies to bring it down to 47. I had to stop the venesections and hydroxyuria because of neutropenia after 5 weeks of treatment. Stayed on Pegasys 90 and developed a thrombopenia (platelets at 55000). The Hct moved up to 48. I reduced the dose to Pegasys 45 and a week later the HCT was at 44... All these happened in 7 weeks.