wHAT HAVE ACTUAL PATIENTS EXPERIENCED IN TREATMENT wITH XYREM?

HOw HAVE ACTUAL PATIENTS EXPERIENCED TREATMENT wITH XYREM?

Meet Lori.

Diagnosed with narcolepsy type 1 (narcolepsy with cataplexy, based on DSM-5* criteria).

42 years old | Public housing manager
Effective XYREM dosage: 7.5 g per night

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

Presentation

  • Referred to a neurologist/sleep specialist for complaints of "severe itching that came from deep within her bones" and feeling tired throughout the day.
  • Clinical interview reveals manifestations of excessive daytime sleepiness (EDS):
    • Complains of frequent irresistible urges to nap and the need to nap during her lunch break.
  • Lori’s physician determined that the itching was unrelated to her sleepiness.
  • Insufficient sleep appears unlikely (patient reports adequate hours of sleep each night).
  • No obvious evidence, by clinical interview, of other sleep disorders (eg, obstructive sleep apnea, restless leg syndrome, periodic limb movements in sleep, or circadian rhythm sleep-wake disorders).
  • Past medical history includes depression, generalized anxiety disorder, panic disorder, and obsessive-compulsive disorder.
  • Currently taking a serotonin-norepinephrine reuptake inhibitor (SNRI), a tricyclic antidepressant, and an antipsychotic.
Learn about Lori’s diagnosis>

*DSM-5 = Diagnostic and Statistical Manual of Mental Disorders, 5th ed.

Diagnosis

  • Overnight PSG:
    • Ruled out OSA and other primary sleep disorders.
    • No SOREMPs observed.
  • MSLT:
    • Revealed mean sleep latency of 4 minutes.
    • No SOREMPs observed.
  • Initial diagnosis: idiopathic hypersomnia.
  • Subsequent to initial diagnosis, severe itching persisted, contributing to anxiety.
  • Significant sleepiness also continued.
  • Referred to psychiatrist/sleep specialist to help manage both psychiatric and sleep issues, including the itching that was causing her anxiety.
  • This second sleep specialist determined that her itching was unrelated to her narcolepsy symptoms.
  • Epworth Sleepiness Scale (ESS) score = 19.
  • Clinical interview also revealed history of cataplexy:
    • Inability to speak and slurred speech, weakness in fingers, hands, and lower legs.
    • Emotional triggers of stress, surprise, and fear.
    • Multiple cataplexy attacks per week.
  • Because cataplexy was identified during the clinical interview, sleep laboratory testing was not repeated.
    • It was important for the patient to continue use of antidepressants, known to suppress REM sleep.
  • The DSM-5 criteria were used to confirm the diagnosis.
    • The DSM-5 criteria allow the presence of cataplexy to be considered diagnostic for narcolepsy.1
  • Diagnosis of narcolepsy type 1 established.
Learn about Lori’s treatment >

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

*DSM-5 = Diagnostic and Statistical Manual of Mental Disorders, 5th ed.

Certain medications can impact sleep laboratory testing results. Per ICSD-3 (International Classification of Sleep Disorders, 3rd ed) criteria, if narcolepsy type 1 is strongly suspected clinically but MSLT criteria are not met, a possible strategy is to repeat the MSLT. For correct interpretation of MSLT findings, patient must be free of drugs that influence sleep for at least 14 days (or at least 5 times the half-life of the drug and longer-acting metabolite), confirmed by a urine drug screen. If patient is on a REM-suppressing agent during sleep laboratory testing and results come back inconclusive but narcolepsy type 1 is strongly suspected, a possible strategy is to repeat the MSLT after discontinuing the REM-suppressing agent for at least 2 weeks.2-4

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 and 2.25 g 2.5–4 hours later).
  • Titrated to effective dosage:
    • By increasing dosage by 1.5 g per night at weekly intervals.
  • Frequent follow-up maintained throughout dose titration to review symptom response and adverse reactions, and to monitor symptoms of depression and anxiety.
  • Effective dosage:
    • 6.0 g per night in 2 equal, divided doses (3 g at bedtime and 3 g 2.5–4 hours later) produced significant reductions in EDS and cataplexy; therapy well tolerated.
    • 7.5 g per night in 2 equal, divided doses (3.75 g at bedtime and 3.75 g 2.5–4 hours later) produced significant reductions in EDS and cataplexy; therapy well tolerated.
    • 9.0 g per night in 2 equal, divided doses (4.5 g at bedtime and 4.5 g 2.5–4 hours later) continued reductions in EDS and cataplexy. However, significant nausea and some weight loss were reported, leading to dosage reduction.
    • Final effective and tolerable dosage: 7.5 g per night (3.75 g at bedtime and 3.75 g 2.5–4 hours later).

*DSM-5 = Diagnostic and Statistical Manual of Mental Disorders, 5th ed.

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