A recent study supports what individuals with polycythemia vera (PV) have known for years. PV associated symptoms are underappreciated by doctors and don’t necessarily correlate with blood counts levels.
Individuals with PV can experience symptoms of fatigue, itching, weakness, headaches and other symptoms despite being on medication. All too often physicians don’t appreciate the severity and troublesome nature of these symptoms especially in individuals whose disease seems to be “controlled” as evidenced by their blood counts. Market research in fact with PV patients suggests they often feel their doctor underestimates the severity of their symptoms.
A new research support further confirms the observation that physicians can under appreciate the severity of patient’s symptoms, especially if they overly rely on blood counts to tailor their treatment. This research demonstrated that achieving blood count control does not necessarily result in symptom control.
Patients should work with their physician to create a program for regular monitoring of symptom burden as well as their blood counts as a measurement of disease control. Both patients and their physicians need to better appreciate that making treatment adjustments that reduce blood counts below the recommended targets may be necessary to achieve optimal symptom control.
Connect with Other Individuals with PV
References:
- Clin Lymphoma Myeloma Leuk. 2019;19[9]:579-584.
- https://www.clinical-lymphoma-myeloma-leukemia.com/article/S2152-2650(19)30312-X/fulltext
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