Sodium Oxybate Trials, Pediatric Research, and Narcolepsy Comorbidities in the News
World Narcolepsy Day falls annually on September 22. The following news briefs cover recent research of interest to people living with narcolepsy.
Good news for those using sodium oxybate
A new version of the popular narcolepsy treatment, sodium oxybate (SXB), which allows patients to take only 1 dose versus 2 over the course of the night, has been shown to be safe and effective in phase 3 trials.1
Lead author of the research study, Dr. Clete Kushida, suggests that, due to these findings, “clinicians can be confident that a single bedtime dose of sodium oxybate has demonstrated efficacy for both objective and subjective symptoms of narcolepsy.”2
This new treatment, ON-SXB, is an extended-release version of the classic narcolepsy drug more popularly known by its brand name, Xyrem.
Patients typically take one dose of Xyrem at bedtime, with a second dose between 2.5 and 4 hours later. This requires setting an alarm or enlisting the help of a bed partner or caregiver to awaken to take the second dose.3 Reducing dosage to once at night helps to remove a major barrier to care for many living with narcolepsy.
SXB update from the Nexus Narcolepsy Registry
In related news, the Nexus Narcolepsy Registry shared findings from the first 4 waves of its survey between June 2015 and December 2017. Their goal? To evaluate patient-reported outcomes while using SXB. Overall, they reported that patients enjoyed better outcomes while using SXB, including improved sleep quality, better daytime functioning, higher quality of life, less work-related impairment, and lower risk for motor vehicle accidents.4
New insights into pediatric narcolepsy
In 2021, three reports highlight better understanding or new questions linked to the occurrence of narcolepsy in children.
Disparity noted among kids with narcolepsy and their sleep physicians in nationwide survey
The survey, published early in 2021, asked children with narcolepsy, their parents, and their sleep specialists to clarify their most problematic symptoms, challenges, and comorbidities.5
The data highlight the gap between what patients reported versus what their doctors and family members observed. For instance, their sleep specialists tended to rate issues with obtaining driver’s licenses and medication side effects as most concerning. Meanwhile, patients themselves were more likely to express concern about issues with focus, memory, school, and anxiety.5
New narcolepsy severity scale validated for use in children
The Narcolepsy Severity Scale (NSS) has long been used to measure severity, frequency, and consequences of the 5 key symptoms of narcolepsy type 1 in adults: cataplexy, hallucinations, excessive daytime sleepiness (EDS), sleep paralysis, and sleep disruption.
A new version of the NSS, the NSS-P, now exists to assess narcolepsy severity in children over the age of 10 who’ve been diagnosed with the sleep disorder. The new scale, a brief screening tool that’s easy to administer, was recently validated and found to be both reliable and stable when used over time.6
Second settlement links childhood narcolepsy to European swine flu shot
The Pandemrix vaccine, given to more than 30 million people following the swine flu pandemic in Europe in 2009, triggered a higher rate of narcolepsy in children, possibly due to an autoimmune reaction linked to the shot.7
Last May, a 16-year-old girl in Ireland who received the vaccine at age 5 was awarded €1.2 million from the maker of the vaccine, GlaxoSmithKline (GSK). According to reports from her parents, she began falling asleep at mealtimes and taken lengthy after-school naps within the month following her shot. She was diagnosed with narcolepsy four years later.8
This is the second settlement paid out by GSK to a child who received the vaccine, then later developed narcolepsy.
Narcolepsy’s potential comorbidities
Researchers describe 2 different health conditions as possibly sharing links with narcolepsy in recent studies.
A new population-based study in Taiwan found a significantly higher level of previous asthma diagnosis in people with narcolepsy. Those with asthma who treated their condition with inhaled corticosteroids also showed a lower risk for developing narcolepsy.9
People with narcolepsy type 1 experience low hypocretin levels. Hypocretins are substances in the brain mostly known to regulate wakefulness. However, hypocretins also play a role in regulating heart rate and blood pressure.
Recent research shows that reduced hypocretin levels in people with narcolepsy may be linked to multiple cardiovascular risks due to high blood pressure. Of special concern — people with narcolepsy type 1 lack the characteristic dip in blood pressure that is part of normal sleep, increasing their risks for hypertension.10
Do any of your family and/or friends also have narcolepsy?