Opinion
Video
Available Treatment Options in Narcolepsy
Author(s):
Panelists discuss individualized, shared decision-making approaches to newer narcolepsy treatments like low-sodium oxybate, traditional oxybate, and solriamfetol, emphasizing lifestyle interventions such as the RISE UP protocol and addressing factors like iron deficiency, while highlighting the importance of tailored monitoring and patient-provider trust for long-term management.
When considering newer narcolepsy treatments like low-sodium oxybate, traditional oxybate (Xyrem), or solriamfetol (a Portola product), the approach is highly individualized and centers on shared decision-making. Any of these medications could be appropriate first-line options or used in combination, depending on patient response and tolerability. The clinician emphasizes presenting the pros and cons of each medication to the patient and allowing her to choose, with the option to switch or combine treatments if needed. Life changes, such as pregnancy or job shifts, may also necessitate adjustments to the regimen over time.
Lifestyle and behavioral interventions are also key in managing narcolepsy. For patients with sleep inertia, the RISE UP protocol offers practical strategies: Refrain from snoozing, Increase activity in the morning, Shower or splash cold water on the face, Exposure to bright light, and Phone a friend or engage socially. This structured morning routine can improve wakefulness and motivation. The patient’s iron deficiency anemia, with a ferritin level of 26, is noted as a potential contributor to fatigue and restless sleep, even without a diagnosis of restless leg syndrome. The goal would be to raise ferritin levels to at least 75 to 100 to improve overall energy and sleep quality.
Monitoring treatment response varies by medication choice. Oxybate requires closer oversight and frequent follow-up due to titration and adverse effects, typically with quarterly visits after stabilization. Solriamfetol usually needs a 1-month follow-up after initiation, then visits every 6 months if stable. Portola’s medication, being noncontrolled, requires less frequent monitoring but still demands assessment of symptom control and adverse effects. Building a trusting relationship encourages honest communication about medication effectiveness and tolerability, which is critical for successful long-term management.
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