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Understanding the realities and risks of polycythaemia vera

What is polycythaemia vera?

PV is a life-threatening condition associated with increased mortality and reduced quality 
of life1,2

PV is a myeloproliferative neoplasm characterised by an increase in blood cell production.1,2 A mutation in the JAK2 gene leads to an overactive JAK/STAT pathway.1 The result is an elevated HCT value and increased risk of thromboembolic events and debilitating symptoms.2,3

Map of the UK image.

In the UK, 2 people per 100,000 have PV4

The figure >99%.

Of patients with PV have a JAK2 mutation1

The text 14 years.

Median overall survival*1

The text 60 years.

Median age at diagnosis5

Patients with PV have a high symptom burden that detrimentally impacts their lives1,2

  

Patients with PV may suffer from a wide range of symptoms that can impact their quality of life.2,6

View each symptom below to see how many patients with PV (n=538) reported being affected by it:†6

Icon of a head on a pillow.

88%

Fatigue

Icon of a lightbulb with a no entry sign.

65%

Concentration
problems

Icon of food and drink.

64%

Early satiety

Icon to represent itchy skin.

62%

Pruritus

Icon of an armchair.

61%

Inactivity

Icon to represent night sweats.

52%

Night sweats

Icon to represent abdominal discomfort.

51%

Abdominal
discomfort

Icon to represent bone pain.

50%

Bone pain

Bathroom scales icon.

31%

Weight loss

Thermometer icon to represent fever.

18%

Fever

61% of patients report symptom reduction as their primary goal of treatment‡2

Patients can still be burdened by symptoms despite blood count control6

 

The prospective, observational REVEAL study of 1813 patients with PV showed that a moderately high symptom burden is present regardless of blood count control.7

Patients may not understand that any changes to how they are feeling, even while their blood counts are controlled, may be related to their PV. They can regularly track their symptoms using an online tracker to ensure they give you the full picture during each appointment.

Help patients monitor their symptoms with the Novartis-funded MPN10 tracker – download by clicking the button below or copy and paste the link into your browser: https://uk.mpn.your-symptom-questionnaire.com/

MPN tracker

Explore the cardiovascular risks that patients with polycythaemia vera face

Discover more

Discover more information about PV and how it impacts the people who live with it:

Jakavi Therapy 1080x1080
Cardiovascular risk
Cardiovascular risk

The elevated risk of thromboembolic events.

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HU intolerance and resistance
HU intolerance and resistance

The risks of HU treatment failure and its identification.

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Living with PV
Living with PV

The daily difficulties patients with PV face.

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Resources
Resources

A collection of materials for HCPs, patients and carers.

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Hydroxyurea is synonymous with/refers to hydroxycarbamide throughout.

*Among 826 Mayo Clinic patients with ET, PV or PMF, the respective median survivals were approximately 20 years for ET, 14 years for PV and 6 years for PMF.1
†Data from self-reported symptom scores from patients with PV (n=538) in a study evaluating the MPN-SAF TSS tool (N=1433).6 The MPN-SAF TSS is calculated as the mean score for the 10 items shown here. Self-reported symptom severity was rated on a 0 (absent/as good as it can be) to 10 (worst imaginable/as bad as it can be) scale. In this study, the MPN-SAF TSS for PV was calculated as mean 21.8 (SD 16.3).6
‡Data from patients with MPNs (ET, n=302; MF, n=174; PV, n=223) surveyed in the International MPN Landmark Survey (N=699).2

ET, essential thrombocythaemia; HCT, haematocrit; HU, hydroxyurea; MF, myelofibrosis; MPN, myeloproliferative neoplasm; MPN-SAF TSS, Myeloproliferative Neoplasms Symptom Assessment Form Total Symptom Score; PMF, primary myelofibrosis; PV, polycythaemia vera; SD, standard deviation.

References

  1. Tefferi A, Barbui T. Am J Hematol 2020;95:1599–1613.

  2. Harrison CN, et al. Ann Hematol 2017;96:1653–1665.

  3. Tefferi A, et al. Leukemia 2021; 35:3339–3351.

  4. MPN Voice. Polycythaemia Vera. Available at: https://www.mpnvoice.org.uk/about-mpns/questions/polycythaemia-vera/. Last accessed April 2025.

  5. Lurlo A, et al. Int J Mol Sci 2020;21:5805.

  6. Emanuel RM, et al. J Clin Oncol 2012;30:4098–4041.

  7. Grunwald MR, et al. Clin Lymphoma Myeloma Leuk 2019;19:579–584.

UK | April 2025 | FA-11309430

Adverse events should be reported. Reporting forms and information can be found at www.mhra.gov.uk/yellowcard. Adverse events should also be reported to Novartis online through the pharmacovigilance intake (PVI) tool at www.novartis.com/report, or alternatively email [email protected] or call 01276 698370.