FAQs
Find answers to frequently asked questions about LUMRYZ®
Learning about LUMRYZ
LUMRYZ is a prescription medicine used in people 7 years of age or older to treat the following symptoms of narcolepsy:
- sudden onset of weak or paralyzed muscles (cataplexy), or
- excessive daytime sleepiness (EDS)
It is not known if LUMRYZ is safe and effective in children under 7 years of age.
The active ingredient in LUMRYZ is sodium oxybate.
Learn more about oxybate therapies
What makes LUMRYZ different is that unlike other oxybate options, with LUMRYZ, you don't need to wake up in the middle of the night for a second dose. The extended-release formula of LUMRYZ contains a blend of granules that work in 2 ways:
- Immediate-release granules start working as you fall asleep
- Controlled-release granules start working later while you sleep
Yes, in a clinical trial, LUMRYZ was proven to reduce daytime symptoms of narcolepsy (cataplexy and excessive daytime sleepiness [EDS]) with a once-at-bedtime dose.
Yes. Whether you're already taking LUMRYZ or exploring treatment options, connecting one-on-one with a real person being treated with LUMRYZ who may understand what you're going through can offer honest insights, lived experience, and encouragement that may help you feel more confident in your journey.
The LUMRYZ Mentor Program may be helpful for you if you have questions for your mentor about any of the following (and more):
- Their journey with narcolepsy
- Practical tips for managing symptoms and staying motivated
- Their experience with LUMRYZ
Living with narcolepsy can be challenging. For many, the journey ahead may feel uncertain and confusing, but it's important to remember you're not alone.
To learn more about the LUMRYZ Mentor Program and to schedule a call with a mentor, please call 1-888-209-5105 or visit the LUMRYZ Mentor Program.
*Must be 18 years of age or older to participate.
Yes. Only LUMRYZ has an extended-release oxybate formulation. That means that LUMRYZ is dosed once at bedtime. Other oxybates require a first dose at bedtime and a second dose 2.5 to 4 hours later. LUMRYZ is the first and only oxybate that offers the opportunity to avoid disrupting your sleep for a second dose.
LUMRYZ® (sodium oxybate) is a central nervous system (CNS) depressant. Taking LUMRYZ 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 (respiratory depression), low blood pressure (hypotension), changes in alertness (drowsiness), fainting (syncope), and death.
The active ingredient of LUMRYZ (sodium oxybate) is a form of gamma hydroxybutyrate (GHB), a controlled substance. Abuse or misuse of illegal GHB alone or with other CNS depressants (drugs that cause changes in alertness or consciousness) have caused serious side effects. These effects include seizures, trouble breathing (respiratory depression), changes in alertness (drowsiness), coma, and death. Call your doctor right away if you have any of these serious side effects.
Because of these risks, LUMRYZ is available only by prescription and filled through certified pharmacies in the LUMRYZ REMS program. You must be enrolled in the LUMRYZ REMS to receive LUMRYZ. Further information is available at www.LUMRYZREMS.com or by calling 1-877-453-1029.
LUMRYZ can cause serious side effects, including the following:
- Breathing problems, including slower breathing, trouble breathing, and/or short periods of not breathing while sleeping (eg, sleep apnea). People who already have breathing or lung problems have a higher chance of having breathing problems when they take LUMRYZ.
- Mental health problems, including confusion, seeing or hearing things that are not real (hallucinations), unusual or disturbing thoughts (abnormal thinking), feeling anxious or upset, depression, thoughts of killing yourself or trying to kill yourself, increased tiredness, feelings of guilt or worthlessness, and difficulty concentrating. Tell your doctor if you or your child have or had depression or have tried to harm yourself. Call your doctor right away if you or your child have symptoms of mental health problems or a change in weight or appetite.
- Sleepwalking. Sleepwalking can cause injuries. Call your doctor if you or your child start sleepwalking.
The most common side effects reported by adults in the clinical trial were nausea, dizziness, bedwetting, headache, and vomiting.
The safety of LUMRYZ for the treatment of cataplexy or excessive daytime sleepiness (EDS) in pediatric patients 7 years of age and older with narcolepsy was determined in a well-controlled trial of immediate-release sodium oxybate.
The most common side effects in children include nausea, bedwetting, vomiting, headache, decreased weight, decreased appetite, dizziness, and sleepwalking.
Side effects may increase when taking higher doses of LUMRYZ.
These are not all the possible side effects of LUMRYZ. For more information, ask your doctor or pharmacist. Call your doctor for medical advice about side effects. You may report side effects to FDA at 1-800-FDA-1088.
For more information, please see the full Prescribing Information and Medication Guide for LUMRYZ.
The one-on-one phone-based LUMRYZ Mentor Program connects you with someone living with narcolepsy and treating with LUMRYZ. Whether you’re exploring your options or already on treatment, a mentor can offer honest insights, lived experience, and encouragement that may help you feel more confident in your journey.
To learn more about the LUMRYZ Mentor Program and to schedule a call with a mentor, please call 1-888-209-5105 or visit the LUMRYZ Mentor Program.
*Must be 18 years of age or older to participate.
Starting LUMRYZ
Everyone responds to treatment differently. In the clinical trial for LUMRYZ,* some people saw symptom improvements as early as Week 3 on the 6 g dose, while others saw symptom improvements at Week 13† after titrating to a higher dose.
*The LUMRYZ double-blind, placebo-controlled clinical trial included people with narcolepsy treated with LUMRYZ (n=107). The results measured at Week 3 (n=88), Week 8 (n=77), and Week 13 (n=69) showed daytime symptom improvement of people on the 6 g, 7.5 g, and 9 g doses of LUMRYZ, respectively. Individual results may vary.
†As seen in people taking the 9 g dose of LUMRYZ and compared to baseline results at the start of the trial.
Only your healthcare provider can prescribe LUMRYZ. If you and your healthcare provider have decided LUMRYZ is right for you, they will work with you to consider the best way to start treatment.* LUMRYZ is approved for the treatment of cataplexy or excessive daytime sleepiness (EDS) in adults and children 7 years of age and older with narcolepsy.
For adults, if you’re currently taking an oxybate, your healthcare provider may switch you to LUMRYZ at the closest dose—equal to the total nightly amount of medicine you’re taking now. If you often miss your second nightly dose, be sure to tell your healthcare provider so they can determine your appropriate starting dose.
*For pediatric dosing, please see the full Prescribing Information.
You may be switched to a starting dose closer to what your body is used to taking.
It’s important for your healthcare provider to understand how often you may have had to miss the second dose of your twice-nightly oxybate, as it may be more appropriate to switch to a lower starting dose of LUMRYZ than what you were previously prescribed.
Hear others’ experiences of switching from a twice-nightly oxybate to LUMRYZ
To help you start the conversation with your healthcare provider, we created a discussion guide with key questions to ask and plenty of space to take notes.
LUMRYZ is only available after enrollment in the LUMRYZ Risk Evaluation and Mitigation Strategy (REMS) and RYZUP® Support Services. The LUMRYZ REMS (Risk Evaluation and Mitigation Strategy) is a safety program that manages the risks of serious adverse outcomes resulting from inappropriate prescribing, misuse, abuse, and diversion of LUMRYZ. The LUMRYZ REMS is required by the Food and Drug Administration (FDA) to ensure the potential benefits of LUMRYZ outweigh its risks.
Your healthcare provider starts your enrollment, and to complete enrollment you’ll need to sign 2 forms:
- Patient Authorization Form
- LUMRYZ REMS Patient Enrollment Form
You may be asked to sign these forms in the healthcare provider’s office. If not, you may receive two (2) separate emails with instructions for how to complete and e-sign.
Taking LUMRYZ
With LUMRYZ, you take 1 premeasured packet, once at bedtime, at least 2 hours after eating. See the Instructions for Use for how to prepare, shake, and take LUMRYZ.
After preparing your LUMRYZ dose, you will notice the mixture does not fully dissolve in water and has a gritty texture with a salty taste. If you like, you can mix in a calorie-free drink mix or flavored water enhancer, such as Crystal Light® or MiO® Liquid Water Enhancer.
Some granules will stick together and look milky and lumpy even after being thoroughly shaken in the provided mixing cup. This is because each premeasured dose packet contains a mix of immediate- and controlled-release granules designed to slowly release medicine into the body during sleep so you don’t have to wake for a second dose.
See the Instructions for Use for more on what to expect when taking LUMRYZ.
LUMRYZ should be mixed with water (make sure that the water is not hot). If you like, you can include a calorie-free drink mix or flavored water enhancer, such as Crystal Light® or MiO® Liquid Water Enhancer.
See the Instructions for Use for more on how to take LUMRYZ.
Insurance and cost
Yes, RYZUP Support Services offers a variety of financial support programs, including a co-pay assistance program for commercially insured patients. Most patients with commercial insurance pay a $0 co-pay when using the LUMRYZ Co-pay Program.*
*This offer is valid only for patients who have commercial insurance and a qualifying LUMRYZ prescription. Offer not valid for patients enrolled in Medicare, Medicaid, or other federal or state healthcare programs. Maximum benefit limits per prescription and annual benefit limits (“Annual Program Maximum”) per individual apply. Patients’ out-of-pocket expenses may vary. Additional terms and conditions apply. Download the full terms and conditions of the co-pay program.
RYZUP Support Service Nurse Care Navigators (NCNs) are there to help you with questions about cost and insurance coverage throughout your treatment. They will help connect you with any LUMRYZ savings and access programs you may qualify for. If your insurance situation ever changes, they can also discuss access programs you may be eligible for with your healthcare provider.
LUMRYZ financial assistance programs are designed to cover a variety of situations.
Typically you can remain on your twice-nightly oxybate until the insurance coverage process for your LUMRYZ prescription is complete.
If there is a delay in insurance coverage, you may be eligible for up to 120 days of free product with the LUMRYZ Quick Start Program.* Your Nurse Care Navigators (NCNs) can discuss that option with you.
*Applies only to eligible, commercially insured patients.
Stay connected for information about LUMRYZ
Connect with a real person taking LUMRYZ
