How to explain Xywav (calcium, magnesium, potassium, and sodium oxybates) to a patient with a history of narcolepsy?

How to Explain Xywav to a Patient with Narcolepsy

What Xywav Is and How It Works

Xywav is a liquid medication you take twice each night to treat your narcolepsy symptoms, including sudden muscle weakness (cataplexy) and excessive daytime sleepiness. 1 The medication contains calcium, magnesium, potassium, and a small amount of sodium combined with oxybate, which is the active ingredient that helps control your symptoms. 2

• Xywav works by improving your brain's regulation of sleep and wake cycles, helping you sleep more soundly at night and stay more alert during the day. 3
• This medication is essentially the same as an older medication called Xyrem, but contains 92% less sodium, which is better for your heart and blood pressure. 2, 4

How You'll Take This Medication

You will take Xywav twice each night: the first dose at bedtime and the second dose 2.5 to 4 hours later. 1

• Your starting dose will typically be 2.25 grams at bedtime and another 2.25 grams for the second dose (total 4.5 grams per night), which your doctor may gradually increase by 1.5 grams per week until you reach the most effective dose, usually between 6 to 9 grams total per night. 1
• You must take the first dose at least 2 hours after eating, as food significantly affects how the medication works. 1
• You will fall asleep very quickly after taking each dose—often within 5 to 15 minutes—so you must be in bed before taking it. 1
• Set an alarm for your second dose, stay in bed when you take it, and go right back to sleep. 1

Critical Safety Information You Must Understand

Xywav is a powerful central nervous system depressant that can cause serious breathing problems, profound sedation, and even death if not used correctly. 1

Absolute Rules:

• Never drink alcohol or take sleeping pills while using Xywav—this combination can be fatal. 1
• Do not drive, operate machinery, or do anything requiring alertness for at least 6 hours after taking each dose. 1
• The medication can cause sudden sleep onset, even while standing, which has caused falls and injuries requiring hospitalization. 1

Controlled Substance Restrictions:

• Xywav contains the sodium salt of GHB (gamma-hydroxybutyrate), which is a federally controlled substance with potential for abuse. 1
• You can only get this medication through a special restricted program called the XYWAV and XYREM REMS, and it will be shipped directly to you from a certified central pharmacy. 1
• You must enroll in this program to receive the medication. 1

Common Side Effects to Expect

Most patients experience nausea, dizziness, bedwetting, headache, and vomiting, especially when starting treatment. 3

• Weight loss is common and can be significant. 5
• Some patients experience confusion, anxiety, or other psychiatric symptoms—contact your doctor immediately if this occurs. 1
• Sleepwalking and other sleep-related behaviors can happen; tell your doctor if you notice this. 1

Serious Warnings Requiring Immediate Medical Attention

Contact your doctor immediately if you develop: 1

• Depressed mood or loss of interest in activities you usually enjoy
• Thoughts of suicide or self-harm
• Significant breathing difficulties or pauses in breathing during sleep
• Severe confusion or psychosis

What to Expect from Treatment

The American Academy of Sleep Medicine strongly recommends sodium oxybate (the active ingredient in Xywav) as first-line treatment for narcolepsy because it addresses multiple symptoms simultaneously. 3, 6

• Clinical trials show significant improvements in cataplexy attacks, excessive daytime sleepiness, and nighttime sleep quality. 3
• Most patients who switch from the older high-sodium version (Xyrem) to Xywav maintain the same effectiveness with the same dose and prefer Xywav due to its lower sodium content. 4
• You may notice improvements in your quality of life, work or school performance, and overall functioning with continued treatment. 5

Special Considerations

• If you have heart failure, high blood pressure, or kidney problems, your doctor needs to monitor you closely because even though Xywav has much less sodium than Xyrem, it still contains some sodium. 1
• If you have any breathing problems like sleep apnea, this medication requires extra caution due to respiratory depression risk. 1
• This medication may harm an unborn baby based on animal studies, so discuss pregnancy planning with your doctor. 3
• Tell all your healthcare providers about every medication you take, as many drugs can interact dangerously with Xywav. 1

Long-Term Benefits

Beyond symptom control, Xywav's lower sodium content compared to older formulations may provide cardiovascular health benefits over time, which is particularly important since narcolepsy itself increases your cardiovascular risk. 4, 5

• The FDA recognizes the reduced sodium content as clinically meaningful in reducing cardiovascular complications in the narcolepsy population. 4
• Your doctor can adjust your dose and timing over the years as your life circumstances change, making this a flexible long-term treatment option. 5