DOCTOR DISCUSSION GUIDE
Talk to your healthcare provider about XYREM.
Your healthcare provider is the best source of information about your condition and the treatment approach that’s right for you. Use this discussion guide at your visit to help you have a more informed conversation.
Talk about cataplexy and excessive daytime sleepiness (EDS) in narcolepsy
Everybody with narcolepsy has EDS, but did you know that about 70% of people with narcolepsy also have cataplexy? Here’s a little more information about these 2 common symptoms of narcolepsy.
EDS is characterized by the inability to stay awake and alert during the day, which causes an uncontrollable need for sleep or makes you feel very drowsy. It is the main symptom of narcolepsy.
Cataplexy is characterized by suddenly weak or paralyzed muscles triggered by strong emotions. It can happen during positive or negative emotions, such as laughing out loud or feeling angry or stressed.
Also, did you know there are 2 types of narcolepsy? Based on your symptoms, your doctor determines which type of narcolepsy you have—narcolepsy type 1 (narcolepsy with cataplexy or with low or absent levels of hypocretin) or narcolepsy type 2 (narcolepsy without cataplexy).
Talk about your ESS and SNS scores
The Epworth Sleepiness Scale (ESS) and Swiss Narcolepsy Scale (SNS) are 2 questionnaires that can help your healthcare provider assess your symptoms. So share your scores at your visit. You can get your scores by taking the ESS and SNS questionnaires here.
Talk about XYREM as a treatment option
- Approved by the FDA in 2002 for 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.
XYREM is recommended by the American Academy of Sleep Medicine as a standard of care for cataplexy and EDS in narcolepsy.
Please see the list of questions below to help facilitate a more informed conversation with your healthcare provider. Some important information is provided here, but your healthcare provider may be able to give you more in-depth and personalized answers.
Patients with a diagnosis of type 1 narcolepsy (previously termed narcolepsy with cataplexy) have excessive daytime sleepiness and either report cataplexy or have low or absent levels of hypocretin. Patients with type 2 narcolepsy (previously termed narcolepsy without cataplexy) experience excessive daytime sleepiness but do not have cataplexy. Their levels of hypocretin are either unknown or are not deficient.
XYREM is FDA-approved for the treatment of cataplexy and EDS in narcolepsy. In clinical studies, XYREM significantly reduced the frequency of cataplexy attacks compared with placebo at 4 weeks of treatment. It also significantly reduced EDS compared with placebo, as measured by ESS score after 8 weeks of treatment.
To see if XYREM is working for you, consult with your healthcare provider. Together you can determine the best way to track your progress over time. You can compare your ESS scores from before and during treatment, you can evaluate any reduction in cataplexy events, or you can watch for personal benchmarks, like not falling asleep during a meeting or a movie.
The most common side effects of XYREM include nausea, sleepiness, dizziness, vomiting, bedwetting, and tremor (in adults). In pediatric patients, headache, decreased appetite, and weight decrease were also common.Your side effects may increase when you take higher doses of XYREM. XYREM can cause physical dependence and craving for the medicine when it is not taken as directed. These are not all the possible side effects of XYREM. See the Important Safety Information for more about possible side effects.
XYREM is a liquid that is taken at night in 2 separate doses. You take your first dose once you are in bed for the night and at least 2 hours after eating. Then, 2½ to 4 hours later, or as directed by your healthcare provider, you take your second dose, while still in bed. Never take both XYREM doses at the same time. See the Medication Guide for more about taking XYREM.
Taking XYREM with other CNS depressants such as medicines used to make you fall asleep, including opioid analgesics, benzodiazepines, sedating antidepressants, antipsychotics, sedating anti-epileptic medicines, general anesthetics, muscle relaxants, alcohol, or street drugs, may cause serious medical problems, including trouble breathing, low blood pressure, changes in alertness, dizziness, or death. Also, do not drive, operate heavy machinery, or do any other activity that requires you to be completely alert for at least 6 hours after taking XYREM. Make a list of any medications you take and share it with your healthcare provider, so he or she can advise you on taking or stopping them.
Ask your healthcare provider what else you need to know. This will give your healthcare provider the opportunity to share any additional information or advice he or she thinks is important based on your medical history.
A range of support options is available for XYREM patients. JazzCares® for XYREM offers access to information, resources, and support programs, including the chance to connect with a fellow XYREM patient to learn more about treatment. Nurse Case Managers at the Certified Pharmacy are another resource for XYREM information. Also, Jazz Pharmaceuticals is committed to making sure that those who may benefit from XYREM can affordably get it. Several different options are available for qualified patients. Ask your healthcare provider and visit the Support & Savings page to find the support you need.