XYREM for adults
Watch the video XYREM Patient Stories
Learn about XYREM from actual patients who are being treated for excessive daytime sleepiness (EDS) and cataplexy in narcolepsy.
While it is not known how XYREM works, it is thought that XYREM, taken at night, works to impact certain natural chemicals in the brain (called neurotransmitters) to help relieve the daytime symptoms of cataplexy and EDS in narcolepsy.
Supported by years of clinical research
XYREM has been studied for more than 20 years.
XYREM has been prescribed since 2002
In addition, XYREM was approved by the FDA in 2002 for treating cataplexy in narcolepsy and in 2005 for EDS in narcolepsy in adults. As of 2018, healthcare professionals have prescribed XYREM for more than 64,000 patients.
It is important to know all of this because the active ingredient in XYREM is a form of gamma hydroxybutyrate, or GHB. GHB exists normally in the body and performs important functions, but it also has been improperly manufactured and abused. XYREM, however, is made under strictly controlled conditions and can only be received through a central Certified Pharmacy as part of a restricted distribution program called the XYREM® REMS Program. The XYREM REMS Program was developed with the FDA to help make sure that XYREM is shipped to you securely and that you know how to use it properly.
Find out more information about the XYREM REMS Program.
How to make the most of treatment
XYREM is a liquid that is taken at night in 2 separate doses. That means if you are prescribed XYREM, you will need to create a routine to fit XYREM into your nightly schedule. Staying in close contact with your healthcare provider can help you make the most of treatment. Also, you may have to make certain lifestyle changes regarding what you drink and when you eat. Review step-by-step instructions on how to prepare and take the nightly XYREM doses.
Staying on schedule
If you’ve been prescribed XYREM, it’s important to take XYREM every night exactly as your healthcare provider tells you. Do your best to not skip a night or miss the second dose. Using an alarm can help you wake up at the right time to take the second dose. If you do miss your second dose, skip that dose and do not take XYREM again until the next night. Never take 2 doses at the same time. That can cause serious side effects.
Keeping in touch with a healthcare provider
Checking in with a healthcare provider every 3 months is very important to let him or her know if symptoms are improving and about any side effects, including nausea, vomiting, or dizziness. This is important so that a healthcare provider can make sure the dosage is correct and help manage any side effects. Your healthcare provider may adjust your dosage while you are taking XYREM to make sure that you are getting the appropriate dosage.
Giving up alcohol
You should not drink alcohol of any kind with XYREM. Why? Because the combination of XYREM with drinking alcohol can result in serious side effects, including trouble breathing or changes in alertness. Call your healthcare provider right away if you have any of these serious side effects.
Taking XYREM without food
Food can affect how much XYREM is absorbed. So if you’re prescribed XYREM, you should wait at least 2 hours after eating before taking the first nightly dose.
- You may need to change your normal dinnertime and cut out late-night snacks.
- Some people find eating dinner at the same time every night helps with their nighttime routine.
Involving family, friends, coworkers, and loved ones
Your family and loved ones are special sources of support. If you receive a XYREM prescription, share what you learn about XYREM with them, and let them know how you’re doing with your treatment. That way they may be there to help you take your XYREM properly and offer support with any lifestyle changes you decide to make.
Keeping track of your treatment
It’s important to pay attention to how you are doing on XYREM. One way to do that is with this patient diary. Each week, chart your symptoms and accomplishments, and then bring your completed diaries to your regular checkups with your healthcare provider. This will help your healthcare provider measure your response to XYREM and manage any side effects you may experience.
Important rules for your safety
As with any medication, there are certain circumstances that might make it not right for you to take XYREM. You should always keep your healthcare provider informed about any other medical conditions you may have. Especially if you:
- Have short periods of not breathing during sleep (sleep apnea)
- Have snoring, trouble breathing, or lung problems
- Take other sleep medicines or sedatives (medicines that cause sleepiness)
- Have or had depression or have tried to hurt yourself or have thoughts about hurting yourself
- Have liver problems
- Are on a low-salt diet
- Have high blood pressure, heart failure, or kidney problems
- Are pregnant or have plans to become pregnant
- Are breastfeeding or have plans to breastfeed
Situations to avoid when taking XYREM
- Driving a car
- Operating heavy machinery
- Anything dangerous or anything that requires you to be fully awake
- These activities should be avoided for at least 6 hours after you take XYREM.
- Take other sleep medicines or sedatives (medicines that cause sleepiness)
- Drink alcohol
- Have a rare problem called succinic semialdehyde dehydrogenase deficiency
FREQUENTLY ASKED QUESTIONS
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XYREM is a prescription medicine approved by the Food and Drug Administration (FDA) to treat 2 symptoms of narcolepsy: excessive daytime sleepiness (EDS) and cataplexy. XYREM is only available through the XYREM REMS Program.
XYREM is taken at night to reduce both excessive daytime sleepiness (EDS) in narcolepsy and cataplexy in narcolepsy during the day.
XYREM can cause sleep very quickly. Some people fall asleep within 5 minutes, and most people fall asleep within about 15 minutes. That is why you need to be in bed for each dose during the night.
Take XYREM exactly as instructed by your healthcare provider:
- XYREM is taken in 2 doses nightly.
- The first dose is taken at bedtime while in bed.
- The second dose is taken 2½ to 4 hours later while still in bed.
If you wake up early for the second dose:
- - Do not take the second dose before the scheduled time of 2½ to 4 hours after the first dose. This could cause serious side effects or safety issues. Wait at least 2½ hours to take the second dose or as your healthcare provider has instructed.
DO NOT drink alcohol of any kind while taking XYREM.
If you experience the following serious side effects while using XYREM, you should call your healthcare provider immediately:
Breathing problems, including:
- Slower breathing
- Trouble breathing
- Short periods of not breathing while sleeping (sleep apnea). People who already have breathing or lung problems have a higher chance of having breathing problems when they use XYREM.
Mental health problems, including:
- Seeing or hearing things that are not real (hallucinations)
- Unusual or disturbing thoughts (abnormal thinking)
- Feeling anxious or upset
- Thoughts of killing yourself or trying to kill yourself
Call your doctor right away if you have symptoms of mental health problems.
- Sleepwalking. Sleepwalking can cause injuries. Call your doctor if you start sleepwalking. Your doctor should check you.
In clinical studies, some of the most common side effects seen with XYREM were:
- Tremor (in adults)
These are not the only possible side effects with XYREM. If you are concerned about any possible side effects with XYREM, talk with your healthcare provider. He or she may have suggestions for managing any side effects you experience.
If you miss your second nightly dose, skip that dose and do not take XYREM again until the next night. Never take 2 doses at the same time. This could cause serious side effects or safety issues.
In addition, if you do not use your second dose within 24 hours of mixing it with water, you should throw it away.
Taking the 2 separate doses is important to get the desired effect. Never take both XYREM doses at the same time. This could cause additional side effects or safety issues.
While it is not known how XYREM works, it is thought that XYREM, taken at night, works to impact natural chemicals in the brain (called neurotransmitters) to help relieve the daytime symptoms of cataplexy and EDS in narcolepsy.
XYREM can cause sleep very quickly and also leaves your system quickly. Setting an alarm should help you wake up when you need to.
JazzCares® for XYREM offers access to information, resources, and programs that can help support you on XYREM.
JazzCares® for XYREM even gives you the chance to be in contact with a fellow caregiver of a XYREM patient through a service called the Patient & Caregiver Mentor Connections program. That way you can learn more about 2 common symptoms of narcolepsy—excessive daytime sleepiness (EDS) and cataplexy—and treatment with XYREM, from someone else with firsthand experience.
You can also enroll in Inspire to receive emails and/or texts featuring messages of support and encouragement, get important information about XYREM treatment, and download the Inspire+ app. Visit Inspire-Program.com for more information.