6 mins read

Overview: Daybue is a liquid that you swallow to treat Rett syndrome, a rare inherited condition. Common side effects include diarrhea and vomiting. Some people may lose weight while taking Daybue. If you have diarrhea or vomiting (especially if it is severe) or weight loss while taking Daybue, contact your health care provider.

Uses

What is Daybue used for?

Daybue (trofinetide) is commonly used to treat certain people with Rett syndrome, which is a rare inherited condition involving problems with growth and development.

Daybue may also be used for other conditions as determined by your health care provider.

How does Daybue work (mechanism of action)?

Daybue may help brain or nerve cells communicate with each other. This medicine may also work to reduce inflammation and increase the amount of a natural hormone in your body called insulin-like growth factor-1 (IGF-1). This hormone plays a big role in your growth and development. Together, these things may help improve symptoms of Rett syndrome.

How is Daybue supplied (dosage forms)?

Daybue is available as a 200 mg/mL oral solution that is taken by mouth.

How should I store Daybue?

Daybue should be stored upright in the refrigerator between 36 F and 46 F (2 C and 8 C). Do not freeze it. Keep the cap tightly closed when you are not using it. Throw away any unused medicine 14 days after opening the bottle for the first time.

Side Effects

What are the most common side effects of Daybue?

The most common side effects of Daybue are listed below. Tell your health care provider if you have any of these side effects that bother you.

  • Diarrhea (see below)
  • Vomiting (see below)

There may be other side effects of Daybue that are not listed here. Contact your health care provider if you think you are having a side effect of a medicine. In the U.S., you can report side effects to the FDA at www.fda.gov/medwatch or by calling 800-FDA-1088 (800-332-1088). In Canada, you can report side effects to Health Canada at www.health.gc.ca/medeffect or by calling 866-234-2345.

What are the serious side effects of Daybue?

While less common, the most serious side effects of Daybue are described below, along with what to do if they happen.

Severe Allergic Reactions. Daybue may cause allergic reactions, which can be serious. Stop taking Daybue and get help right away if you have any of the following symptoms of a serious allergic reaction.

  • Breathing problems or wheezing
  • Racing heart
  • Fever or general ill feeling
  • Swollen lymph nodes
  • Swelling of the face, lips, mouth, tongue, or throat
  • Trouble swallowing or throat tightness
  • Itching or skin rash
  • Bumps on the skin called hives that can be red, pink, white, or brown depending on your skin tone
  • Nausea or vomiting
  • Dizziness, feeling lightheaded, or fainting
  • Stomach cramps
  • Joint pain

Diarrhea. Diarrhea is common with Daybue. It can sometimes be severe. Severe diarrhea may lead to dehydration. Call your health care provider if you have diarrhea while taking Daybue, especially if it is severe. Your health care provider may need to change your dose or tell you to stop taking it. They may ask you to increase the amount of fluids or water you drink to avoid dehydration. If you are given medicine to prevent or treat diarrhea, take it exactly as your health care provider tells you. Call your health care provider right away if you have any of the following.

  • Severe diarrhea
  • Diarrhea that does not go away
  • Diarrhea with weakness, dizziness, or fever

Weight Loss. Daybue may cause weight loss. Your health care provider may need to change your dose or stop the medicine. Call your health care provider if you lose weight while taking Daybue.

Vomiting. Vomiting is common with Daybue, and it can sometimes be severe. People with Rett syndrome are at risk for aspiration (something going down the wrong way when you swallow). Some people taking Daybue get a serious lung infection (aspiration pneumonia) from vomiting and aspirating. Your health care provider may ask you to increase the amount of fluids you drink to keep you from getting dehydrated. If you are given medicine to prevent or treat vomiting, take it exactly as your health care provider tells you. Call your health care provider if you have vomiting while taking Daybue, especially if it happens often, is severe, or is not going away.

Warnings & Precautions

Who should not use Daybue?

Allergies to Ingredients. People who are allergic to any of the following should not take Daybue.

  • Daybue
  • Trofinetide
  • Any of the ingredients in the specific product dispensed

Your pharmacist can tell you all of the ingredients in Daybue.

What should I know about Daybue before using it?

Do not take Daybue unless it has been prescribed to you by a health care provider. Take it as prescribed.

Do not share Daybue with other people, even if they have the same condition as you. It may harm them.

Keep Daybue out of the reach of children. Since this medicine should be kept in a refrigerator, take special precautions to keep it away from children who also use the refrigerator.

Use an accurate measuring device to measure your dose. A household spoon is not an accurate measuring device and may cause you to take the wrong dose. Ask your pharmacist to recommend a proper measuring device.

Daybue can cause diarrhea, so you should not take laxatives while taking it. Laxatives may worsen any diarrhea you have as a side effect of Daybue. See the Side Effects section for more details.

What should I tell my health care provider before using Daybue?

Tell your health care provider about all of your health conditions and any prescription or over-the-counter (OTC) medicines, vitamins/minerals, herbal products, and other supplements you are using. This will help them know if Daybue is right for you.

In particular, make sure that you discuss any of the following.

Current and Past Health Conditions. Tell your health care provider if you have any of the following.

  • Kidney problems
  • Frequent diarrhea

Other Medicines and Supplements. Daybue may interact with other medicines and supplements. Before taking Daybue, tell your health care provider about any prescription or over-the-counter (OTC) medicines, vitamins/minerals, herbal products, and other supplements you are using. See the Interactions section for more details.

Pregnancy. It is not known if or how Daybue could affect pregnancy or harm a fetus. Tell your health care provider if you are pregnant or plan to become pregnant.

Breastfeeding. It is not known if Daybue passes into breast milk. Tell your health care provider if you are breastfeeding or plan to breastfeed. Your health care provider will let you know if you should take Daybue while breastfeeding.

How can I get more information about Daybue?

For more information about Daybue, you can visit the drugmaker’s website at www.daybue.com or call them at 844-422-2342.

Interactions

Does Daybue interact with foods or drinks?

There are no known interactions between Daybue and foods or drinks.

It is unknown if drinking alcohol will affect Daybue.

Does Daybue interact with other medicines (drug interactions)?

Always tell your health care provider about any prescription or over-the-counter (OTC) medicines, vitamins/minerals, herbal products, and other supplements you are using.

In particular, make sure that you discuss if you are taking a laxative, which is a medicine used to treat constipation by softening stools or stimulating your bowels before taking Daybue.

Daybue may alter the blood levels of some other medicines. Tell your health care provider about all medicines that you take or have recently taken.

This may not be a complete list of medicines that can interact with Daybue. Always check with your health care provider.

Does interact with other drugs you are taking?

Enter your medication into the WebMD interaction checker

Overdose/Missed Dose

What should I do if I accidentally use too much Daybue?

If you or someone else has used too much Daybue, get medical help right away, call 911, or contact a Poison Control center at 800-222-1222.

What should I do if I miss a dose of Daybue?

If you miss a dose, skip the missed dose. Take your next dose when you usually would. Do not take double or extra doses to make up for a missed dose. 

If you vomit after you take Daybue, do not take another dose to make up for it. Wait until your next dose is due, and take it at your usual time.