wHAT HAVE ACTUAL PATIENTS EXPERIENCED IN TREATMENT wITH XYREM?

HOw HAVE ACTUAL PATIENTS EXPERIENCED TREATMENT wITH XYREM?

Meet Mary.

Diagnosed with narcolepsy type 1 (narcolepsy with cataplexy).

34 years old | Office manager
Effective XYREM dosage: 9 g per night

Patient stories are based on actual patient experiences. Response to XYREM may be different for each individual.

Presentation

  • Referred to sleep specialist by neurologist for reports of “feeling tired all the time.”
  • Clinical interview reveals manifestations of excessive daytime sleepiness (EDS):
    • Reports being “very tired” all day, every day.
  • Epworth Sleepiness Scale (ESS) score = 19.
  • Clinical interview reveals history of cataplexy:
    • Dropping things preceded by feelings of “tingling” and “numbness” in hands.
    • Falling for “no reason,” with knee buckling in response to strong emotions.
    • Emotional triggers of fear and “passive stress.”
    • More than 1 cataplexy episode per day.
  • Swiss Narcolepsy Scale (SNS) score = -16.
  • Currently taking a serotonin-norepinephrine reuptake inhibitor (SNRI) for major depressive disorder.
Learn about Mary’s diagnosis >

Diagnosis

  • On initial overnight PSG/MSLT (while taking an SNRI):
    • MSLT showed mean sleep latency of 5.9 minutes; no SOREMPs out of 4 nap trials.
  • On a repeat PSG/MSLT (after SNRI taper):
    • PSG ruled out OSA and other primary sleep disorders; nocturnal SOREMP observed.
    • MSLT revealed mean sleep latency of 7.7 minutes, SOREMPs on 4 out of 5 nap trials.
    • Drooping face and sloped shoulders in response to strong emotions such as happiness, anger, stress.
    • Buckling of the legs, occasional full body collapse when laughing or surprised.
    • Daily cataplexy episodes.
  • Swiss Narcolepsy Scale (SNS) score = -42.
  • Repeated PSG, followed by MSLT, showed:
    • Nocturnal SOREMP on PSG.
    • Mean sleep latency 4.3 minutes, SOREMPSs on 1 of 5 nap trials.
  • Diagnosis of narcolepsy type 1 established.
  • SNRI treatment for major depressive disorder reinitiated.
Learn about Mary’s treatment >

MSLT = multiple sleep latency test; OSA = obstructive sleep apnea; PSG = polysomnogram; SOREMP = sleep onset REM period (within 15 min of sleep onset).

Treatment

  • Counseled regarding XYREM therapy.
  • Enrolled in the XYREM® REMS Program.
  • Initial dosage:
    • 4.5 g per night in 2 equal, divided doses (2.25 g at bedtime, 2.25 g 2.5–4 hours later).
  • Titrated to effective dosage:
    • By increasing total nightly dosage by 1.5 g per night (added 0.75 g at bedtime and 0.75 g 2.5–4 hours later) at weekly intervals.
  • Effective dosage:
    • 9 g per night in 2 equal, divided doses (4.5 g at bedtime and 4.5 g 2.5–4 hours later).
STARTING & TITRATING XYREM

Find out about how to start patients on XYREM.

STARTING & TITRATING XYREM
SETTING A ROUTINE

Find out about counseling patients on how to take XYREM.

SETTING A ROUTINE