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Progressive symptoms in PV: Monitoring for Signs of Advanced Disease

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Polycythemia vera (PV) is a chronic myeloid stem cell disorder characterized by excessive red blood cell production. In these patients, they can live a long time, so our primary aim is to try to mitigate the major causes of mortality. The prevalence and severity of symptoms in polycythemia vera makes managing symptoms a primary treatment priority.

In polycythemia vera, blood counts and symptoms can be independent factors. We know that regardless of what a patient’s blood counts are or whether or not their disease is well controlled, they can still have severe symptom burden. So this means that those patients that we otherwise might think look good on paper might have problems going home and seeing their kids, going to work, or even just doing activities that they enjoy.

Symptoms should be monitored early in the disease course as well as over time, as symptoms can plateau, increase, decrease, or just change with therapies.

For healthcare providers, symptoms should be of paramount concern. This is because symptoms are the clues that will help to guide our management decisions in polycythemia vera.

The important thing about symptoms is that they can clue us in to the overall picture of the patient. We know that symptoms can be related to specific features of the disease. We also look at organ dysfunction. A large spleen is something that a lot of patients with polycythemia vera deal with.

We also know that treatments can be related to symptoms, so potentially hydroxyurea and phlebotomy have been shown to have higher symptom burden than patients who are not undergoing those treatments for polycythemia vera.

And you have to take in the whole picture. We have patients who are of different comorbidities, baseline health status, nutrition.

So in general, symptoms can help clue us in to the larger picture of the patient, but also to disease-specific features that we should be paying attention to.

head shot of Dr Scherber
Robyn M Scherber, MD, MPH Sr Director, Medical Affairs at Incyte Asst Prof of Medicine at the University of Texas Health Science Center at San Antonio
Dr Scherber is an active researcher focused on developing tools to address symptom burden among patients with essential thrombocythemia, polycythemia vera, and myelofibrosis. She has also been instrumental in the development of strategies to improve quality of life among MPN patients.