Episode

[Swim360]

Hi Everyone,

I was diagnosed with PV almost 3 years ago now. I am generally in really good health. My treatment has moved from hydroxycarbamide to Pegasys to Besremi.

I had an episode a few weeks ago when my left side completely gave way twice within a couple of hours without warning.

I then experienced dizziness, and numbness down my left side. I was instructed to go to A&E where I was given a thorough check over, as there was concern I had had a stroke, including a CT scan and MRI a couple of days late and was advised I had a healthy brain, always a good thing, and the episode was migraine related.

My MPN consultant aware of my trip to A&E called me in as she was concerned that this was a significant warning sign. Not just a migraine episode.

Her concern that my haematocrit was too high. My range has always been been between .46 and .50, when it is around .50 I will have a venesection (I have had 3 or 4 in the past 12 months).

I have always been comfortable with this as all my other blood counts are normal. I had a previous consultation early in my diagnosis with the professor of the department who was happy to set my target haematocrit at .46 so not sure why it now needs to below .45

However my MPN consultant insisted that I must get my haematocrit below .45. It currently stands at .469 and I am now booked into a venesection for tomorrow. She said if I didn't have the venesection then I would be going against medical advice and would be recorded, no messing there! She is generally concerned I may have a stroke.

Is the haematocrit level this critical? Mine moves up and down mostly due to hydration and it is always within what is considered to be a normal range.

I would be really grateful for any views on the haematocrit levels and why they are so important to those of us that have PV,

Thanks

Brian

[Bicsfriend]

Hi my haematologist is very strict on my haematocrit. Any blood sample above .45 and a vene is scheduled.

There was a large scale trial which is the dataset which established this level.

[ainslie]

Brian

For PV and male your Hct should be kept well under 45 always

[Swim360 in reply to ainslie]

Thanks for your reply and advice ainsie

[hunter5582]

It does sound like you had a neurological event. Whether a TIA or a minor stroke is likely impossible to tell at this point. This is a huge warning that you need to take action. PV puts you at risk for thrombosis and other microvascular events. Controlling the erythrocytosis is a key part of managing risk along with reducing platelet aggregation. The evidence supports the treatment protocol of HCT < 45% for males. Note that when you have PV the upper limit of the normal range for HCT is no longer relevant in terms of the treatment goal. Reducing risk of thrombosis requires better control of the erythrocytosis. In addition, taking a medication to reduce platelet aggregation, usually aspirin, is an important treatment intervention.

The short explanation for why this goal is that hyperviscosity (blood too thick) is a significant risk factor. In addition, there is evidence that the JAK2 mutation makes blood cells "extra-sticky" thus increasing risk of thrombosis and microvascular issues (migraine, erythromelalgia). Keeping the blood thinner decreases risks.

Given your age and recent event, most MPN experts would recommend cytoreduction. Hydroxycarbamide or one of the interferons (Pegasys/Besremi) are the first-line treatment options. Depending on your symptom profile, Jakavi would also be a consideration. SUggest that you review your treatment options with your hematologist.

[Swim360 in reply to hunter5582]

Hunter, thanks for the informative reply

I have never been made aware of the importance of taking the aspirin. My Consultant has also never explained the reasoning for the ranges for my haematocrit and the "extra stickiness" of my blood cells caused by the mutation. Moving forward I will keep taking the aspirin and ensure my haematocrit remains below the .45 target.

[RoundTheWorld]

The MPN Specialist I saw last year was clear that HCT should be below 45 to reduce thrombotic risk.

[Swim360 in reply to RoundTheWorld]

Thanks Round The World, below 45 it needs to be 🙂