Getting started with DAYBUE
Kate, age 9, living with Rett syndrome, with her parents.
If your doctor has prescribed DAYBUE™ (trofinetide), you and your child are ready to explore a new path forward with the first and only approved treatment for Rett syndrome
If you have questions when starting treatment, support is available through Acadia Connect to help you along the way.
DAYBUE is an oral medication that is:
Taken twice daily, in the morning and evening
Strawberry flavored
Able to be taken with or without food
DAYBUE is not a cure for Rett syndrome. Individual results may vary.
The amount of DAYBUE given will be dependent on your child's weight. Your child's doctor will instruct you on the proper dose.
Continue reading for important information about giving DAYBUE.
Starting treatment with DAYBUE?
This guide can help you and your child prepare for and get the most out of treatment with DAYBUE.
Delivery and storage of DAYBUE
Your DAYBUE prescriptions can only be filled by a specialty pharmacy
We partner with AnovoRx, a specialty pharmacy, to process and fill prescriptions. Once AnovoRx finalizes your child’s prescription details, they will schedule delivery to the location most convenient for you. Acadia Connect will also reach out to you regularly to coordinate shipping refills.
What is a specialty pharmacy?
A specialty pharmacy is different from a retail pharmacy. It is a type of pharmacy that focuses on medications that have special handling, storage, and delivery requirements like DAYBUE.
Each month, shipments are delivered in a refrigerated box containing:
Six or eight bottles of DAYBUE, depending on your child’s weight-based dose
Two oral syringes and two Press-In Bottle Adapters (PIBA)
DAYBUE Packaging Materials Recycle Program
We are pleased to offer a recycling service to help you dispose of the DAYBUE packaging materials that come with your medicine. This program is a prepaid service sponsored by Acadia Pharmaceuticals Inc. There is no additional cost to you.
The recycling service is only available in the United States, excluding Alaska, Hawaii, and U.S. territories.
AnovoRx Specialty Pharmacy
AnovoRx will process and fill DAYBUE prescriptions and have clinical pharmacists available 24/7, to:
Answer questions and offer treatment support for DAYBUE
Provide information about potential side effects
Offer clinical recommendations (when appropriate)
Questions about delivery?
Contact Acadia Connect for support at 1-844-737-2223, Monday–Friday, 8:00
Kate, age 9, living with Rett syndrome, with her brother
See what DAYBUE helped spark in Kate
Learn more about Kate's experience with DAYBUE.
How should I store DAYBUE?
Once you receive your shipment:
Store DAYBUE in a refrigerator at a temperature between 36°F and 46°F (2°C to 8°C)
Always store DAYBUE in an upright position
Do not freeze
Discard any unused DAYBUE after 14 days of opening the bottle
Keep the child-resistant cap tightly closed
Keep DAYBUE and all medicines out of the reach of children
Make sure to write down the date you open the bottle on the side label of your medication or another convenient location. DAYBUE must be used within 14 days of opening.
Helpful tips for administration of DAYBUE
How should I give DAYBUE to my child?
DAYBUE may be taken orally or via a gastrostomy (G) tube. If your child has a gastrojejunal (GJ) tube, DAYBUE must be given through the G-port
Give DAYBUE exactly as your doctor tells you to
Measure each dose of DAYBUE accurately using the measuring device provided by the specialty pharmacy. Do not use a household measuring cup
If your child misses a dose of DAYBUE, skip that dose and give the next dose at the usual time. Do not give 2 doses to make up the missed dose
If your child vomits after taking a dose of DAYBUE, do not give another dose to make up for that dose. Wait and give the next dose at the next scheduled time
DAYBUE can be given with or without food
When giving DAYBUE by mouth:
Use something cold to numb the tastebuds like ice cream, an ice cube, or cold water before giving DAYBUE
Dip your medication syringe in sweet syrup* and gently squirt DAYBUE into the side of your child’s cheek. Do not squirt into the back of the throat, as this could cause choking
Use play to help increase your child’s involvement in taking DAYBUE, like pretending to give medicine to a favorite toy
Give a strong-tasting food or drink afterwards to help remove the taste
When you are done, consider giving your child a reward, like playing a favorite game
*DAYBUE should not be mixed directly with any sweetener.
Track your child’s treatment journey each day
You can use the DAYBUE Daily Treatment Journal to help you identify small changes that may impact daily life and help you and your care team stay informed.
Helpful tips to consider for managing
diarrhea
If you are accustomed to treating for constipation, managing diarrhea may be new to you. Diarrhea did occur in some individuals taking DAYBUE who previously experienced constipation.
Before your child starts treatment, talk to your doctor about a management plan to address the possible side effects of diarrhea while on treatment with DAYBUE.
Before your child starts treatment with DAYBUE:
Consider keeping a log to track stool consistency/frequency for one week before starting treatment
Tell your doctor if you are giving your child stool softeners and other medicines or dietary supplements for the treatment of constipation
Stop use of laxatives
Talk to your doctor about any recommended dietary changes including potential use of supplemental fiber
Take steps to plan ahead
This might include stocking up on supplies like wipes, chucks, and extra diapers, or creating a backup bag with a change of clothes for when you’re away from home.
Helpful tip before treatment begins
Letting your child’s school or other members of the care team know about possible treatment effects is a great step to take before starting DAYBUE.
If diarrhea occurs:
Tell your doctor if your child has diarrhea
Keep an eye on your child's fluid intake and watch for signs of dehydration, increase oral fluids if needed. Your doctor may also suggest a fiber supplement, if appropriate.
It is recommended that you have antidiarrheal medications such as loperamide (IMODIUM) at home so you can manage diarrhea as needed
Your doctor may reduce the dose of DAYBUE or may ask you to stop giving your child DAYBUE until diarrhea improves. Do not stop giving DAYBUE without talking to your doctor
Tell your doctor about all of the medicines your child takes, including prescription and over-the-counter medicines, vitamins, and herbal supplements. Taking DAYBUE with certain medicines may affect how the other medicines work and can cause serious side effects.
Kate, age 9, living with Rett syndrome
Frequently asked questions about starting DAYBUE treatment
How will I receive DAYBUE?
DAYBUE will be shipped directly to your home through AnovoRx, a specialty pharmacy. Each delivery will contain one month’s supply of your child’s prescription.
I need assistance with a delivery. Who should I contact?
Contact your Acadia Connect Nurse Care Coordinator for delivery support at 1-844-737-2223, Monday–Friday, 8:00
Overview brochure of Acadia Connect includes delivery, support offerings, and resources. Download now
How should DAYBUE be stored?
Store DAYBUE in a refrigerator at a temperature between 36°F to 46°F (2°C to 8°C). Always store DAYBUE in an upright position and do not freeze.
How often should I give DAYBUE to my child?
Give DAYBUE exactly as your doctor tells you. DAYBUE is taken twice daily, in the morning and evening. DAYBUE can be taken with or without food.
What if my child experiences diarrhea while on treatment?
If your child experiences diarrhea while taking DAYBUE, tell their doctor right away. Your child’s doctor may reduce or interrupt the dose until side effects improve.
For more information, please see helpful tips for managing diarrhea
Support by your side
Acadia Connect is a patient and family support program that connects you and your family with educational support and resources throughout the DAYBUE treatment journey.
Call 1-844-737-2223, Monday–Friday, 8:00
