Daybue
Daybue (trofinetide) is a prescription medication used to treat Rett Syndrome, a rare genetic condition that affects brain development. It’s FDA approved for adults and children ages 2 years and older. The medication comes as a refrigerated, ready-to-use oral solution or as a room-temperature powder (Daybue Stix) that's mixed with liquid before taking. Both forms are taken twice a day by mouth or through a G-tube. Common side effects include diarrhea and vomiting.
What is Daybue (trofinetide)?
What is Daybue (trofinetide) used for?
- Rett Syndrome in adults and children 2 years and older
How Daybue (trofinetide) works
Daybue (trofinetide) is a glycine-proline-glutamate analog. It isn't fully understood how it works for Rett syndrome. But it's thought to reduce swelling in the brain, boost levels of a protein that protects the brain, and stop certain brain cells from becoming too active. These effects might help improve Rett syndrome symptoms, such as problems with breathing, communication, and eye contact.
Drug facts
| Common Brands | Daybue, Daybue Stix |
|---|---|
| Drug Class | Glycine-proline-glutamate analog |
| Controlled Substance Classification | Not a controlled medication |
| Generic Status | No lower-cost generic available |
| Availability | Prescription only |
Side effects of Daybue (trofinetide)
The following side effects may get better over time as your body gets used to the medication. Let your healthcare provider know immediately if you continue to experience these symptoms or if they worsen over time.
Common Side Effects
- Diarrhea (82%)
- Vomiting (29%)
- Weight loss (12%)
Less Common Side Effects
- Fever
- Seizure
- Anxiety
- Reduced appetite
- Fatigue
- Common cold symptoms
The following Daybue (trofinetide) side effects have also been reported
Side effects that you should report to your care team as soon as possible:
- Allergic reactions—skin rash, itching, hives, swelling of the face, lips, tongue, or throat
- Dehydration—increased thirst, dry mouth, feeling faint or lightheaded, headache, dark yellow or brown urine
- Diarrhea
- Weight loss
Side effects that usually do not require medical attention (report these to your care team if they continue or are bothersome):
- Loss of appetite
- Vomiting
Pros and cons of Daybue (trofinetide)
Pros
- First medication specifically approved to treat Rett syndrome
- Available as an oral solution or room-temperature powder option
- Can be taken with or without food
- Approved for adults and children ages 2 years and older
Cons
- Diarrhea is very common and can sometimes be severe
- Must be taken twice a day
- Can cause vomiting and significant weight loss
- Oral solution must be kept refrigerated; powder packet must be mixed
Pharmacist tips for Daybue (trofinetide)
- Take Daybue (trofinetide) twice a day, once in the morning and once in the evening. You can take it with or without food.
- If your child throws up after taking Daybue (trofinetide), don't give another dose. Wait until their next scheduled dose.
- If your child misses a dose of Daybue (trofinetide), skip it and give the next dose at the usual time. Don't give 2 doses to make up for a missed dose.
- Daybue (trofinetide) commonly causes diarrhea, and can sometimes lead to dehydration. Contact your child's prescriber if they have signs of dehydration, such as extreme thirst, dry mouth, or tiredness. They might recommend more fluids, an anti-diarrhea medication, or a change in treatment.
- Daybue (trofinetide) can cause weight loss. Keep track of your child's weight during treatment and tell their prescriber if you notice they're losing weight.
- Daybue (trofinetide) can raise the levels of certain medications in your child's body, such as carbamazepine and midazolam. This can raise the risk of side effects. Tell your child's prescriber about all medications and supplements they take, especially before starting anything new.
Daybue oral solution:
- Measure the oral solution with an oral syringe or dosing cup. Don't use a household spoon because it might not measure the dose accurately.
- Storage: Keep the oral solution upright in the refrigerator with the cap closed, and don't freeze it. Throw away any medication left 14 days after opening the bottle.
Daybue Stix:
- Mix the packet with the recommended amount of water or another water-based drink, such as juice, tea, lemonade, limeade, or a hydration drink.
- Use the entire packet when preparing your dose. Don’t divide a packet because your child might get the wrong amount of medication.
- Give the mixture right after preparing it. Don’t prepare it ahead of time or save leftover mixture for another dose.
- Storage: Keep unopened packets at room temperature. They don't need to be refrigerated.
Risks and warnings for Daybue (trofinetide)
Daybue (trofinetide) can cause some serious health issues. This risk may be even higher for certain groups. If this worries you, talk to your doctor or pharmacist about other options.
Diarrhea
- Risk factors: Taking laxative medications
Daybue (trofinetide) commonly causes diarrhea, which can sometimes continue or come back during treatment. Diarrhea can lead to dehydration if your child loses too much fluid. Stop laxatives before your child starts treatment.
Tell your child's care team if they develop diarrhea. They might recommend more fluids, an antidiarrhea medication, or lowering or pausing the dose. Severe diarrhea or signs of dehydration might require stopping Daybue (trofinetide).
Weight loss
Daybue (trofinetide) can cause significant weight loss. In a clinical study, about 12% of people taking the medication lost more than 7% of their starting body weight. Your child's care team will monitor their weight during treatment. If your child loses too much weight, their care team might pause or lower the dose or stop Daybue (trofinetide).
Vomiting
Daybue (trofinetide) commonly causes vomiting. People with Rett syndrome already have a higher risk of aspiration, which happens when food, liquid, or vomit enters the lungs instead of the stomach. Vomiting can raise the risk of aspiration and a serious lung infection called aspiration pneumonia. Tell your child's care team if they have severe or ongoing vomiting. They might lower or pause the dose or stop Daybue (trofinetide).
Daybue (trofinetide) dosage
Typical dosage for Daybue (trofinetide)
The dose is based on your child's weight. Both Daybue oral solution and Daybue Stix are taken twice a day, in the morning and evening. They can be taken by mouth or through a G-tube.
- 9 kg to less than 12 kg: The typical dose is 5 grams twice a day.
- 12 kg to less than 20 kg: The typical dose is 6 grams twice a day.
- 20 kg to less than 35 kg: The typical dose is 8 grams twice a day.
- 35 kg to less than 50 kg: The typical dose is 10 grams twice a day.
- 50 kg or more: The typical dose is 12 grams twice a day.
Daybue oral solution: The ready-to-use liquid contains 200 mg/mL. Depending on your child's dose, they'll take 25 mL to 60 mL per dose.
Daybue Stix: The powder comes in individual packets that are mixed with water or certain water-based drinks before each dose. Your child's dose determines the strength and number of packets needed.
Your child's dose might be different if they have kidney problems or develop severe side effects, such as diarrhea or weight loss.
Daybue (trofinetide) images
