Oxybates to Treat Narcolepsy

Narcolepsy is a sleep-wake disorder that often causes excessive daytime sleepiness (EDS). It also can cause sudden muscle weakness (cataplexy) and sleep paralysis. In some people, hallucinations and insomnia may occur.^1,2

Narcolepsy has no cure yet. Most people take prescription drugs to manage symptoms. Different types of narcolepsy medicines have different goals. Some focus on keeping you awake, and others lessen cataplexy or disturbed sleep.^1-4

Oxybates are drugs that manage cataplexy and excessive daytime sleepiness. They can lessen cataplexy by up to 85 percent. They also can help you sleep more soundly at night. Oxybates may be prescribed if other narcolepsy drugs are not working.^2-4

How do oxybates work?

Oxybates are the salts of a chemical called gamma hydroxybutyrate (GHB). GHB is made naturally in the brain during the creation and breakdown of a sleep-regulating chemical. This chemical is called gamma-aminobutyric acid (GABA).^4,5

GABA promotes sleep by binding to certain proteins in the brain. Oxybates can bind to similar proteins. When given as a drug, oxybates promote sleep.^2,4,5

Oxybates are different from other narcolepsy drugs in a few ways:^2,4

• Focus – Oxybates are not stimulants that help you stay awake during the day. They target cataplexy and disturbed sleep, which may help to improve excessive daytime sleepiness.
• Route – This type of medicine is taken as a liquid. You drink the liquid before bed, and it helps put you into a heavy sleep. Sometimes, a second dose is taken in the middle of the night.
• Timeline – Oxybates may take weeks to months to be fully effective since you start on a low dose and gradually build up. Other drugs can be fully effective within days.

Examples of oxybates

Three types of oxybates are prescribed for narcolepsy. They are:^2,3

• Xyrem® (sodium oxybate)
• Lumryz® (sodium oxybate)
• Xywav® (calcium, magnesium, potassium, and sodium oxybate)

Xyrem and Lumryz are sodium oxybates. They have a high level of sodium. So, some people with heart problems or high blood pressure may not be able to take these drugs.^6,7

Xywav is a newer type of oxybate that has a lot less sodium. This is because it has a combination of salts instead of just sodium.⁸

What are the possible side effects?

Side effects can vary depending on the drug you are taking. Common side effects can include:^2,3,6-9

• Nausea
• Dizziness
• Headache
• Weight loss
• Disturbed sleep – sleepwalking or psychosis
• Bedwetting
• Mood swings or depression

Oxybates are central nervous system (CNS) depressants. Taking too much, or using them with alcohol or other sedatives, can cause problems such as:^2,3,6-9

• Dizziness
• Weakness
• Slow heart rate
• Slow breathing or trouble breathing
• Seizures
• Cold, clammy skin

Xyrem, Lumryz, and Xywav each have a boxed warning, the strictest warning from the US Food and Drug Administration. They have this warning because they suppress your CNS, which can lead to trouble breathing or loss of consciousness.^6-9

These drugs also have a boxed warning because they carry a risk of abuse or misuse. Misuse of GHB is linked to serious side effects including coma or death.^6-9

These are not all the possible side effects of oxybates. Talk to your doctor about what to expect when taking oxybates. Call your doctor if you have any changes that concern you when taking oxybates.

Other things to know

Your doctor may not prescribe oxybates if you have other issues that could raise the risk of complications, like substance misuse, from this type of drug. You must enroll in a Risk Evaluation and Mitigation Strategy drug safety program to get oxybates. Only certain pharmacies can fill the prescription and only certain physicians are able to prescribe them.^2,3

Oxybates are typically not given during pregnancy or breastfeeding. They may also worsen obstructive sleep apnea (OSA). Tell your doctor if any of these conditions apply to you.^2,3

Oxybates are strong sedatives. They interfere with your ability to awaken. This can be a problem if you care for children, pets, or older adults during the night. Talk with your support system about how to handle these issues while you are taking oxybates.²

Before beginning treatment for narcolepsy, tell your doctor about all your health conditions and any other drugs, vitamins, or supplements you take. This includes over-the-counter drugs.^2,3