Nulibry

Read the instructions or watch this video on how to give your child Nulibry (fosdenopterin). Before you give your child this medication at home, make sure your provider teaches you how to give Nulibry (fosdenopterin) so that you avoid accidentally hurting yourself or wasting the medication. Contact your provider if you have any questions on how to use this medication.

Store unmixed Nulibry (fosdenopterin) vials in the freezer and keep the vials in the original carton away from light. When it's time to mix the medication, take the vial out of the freezer and allow it to reach room temperature. This can be done by rolling the vial(s) gently between your hands for 3-5 minutes or sitting at room temperature for about 30 minutes. Don't try to warm up the medication any other way (e.g., microwave, under hot water) because you might damage it.

If you're giving your child Nulibry (fosdenopterin) at home, make sure to first gather the supplies you need to give the medication. Unopened Nulibry (fosdenopterin) comes as a powder in a vial. You need to mix it with 5 mL of sterile water, which is provided for you, before injection. Depending on your child's dose, you might need to use more than one vial to give the full dose.

After mixing Nulibry (fosdenopterin) powder with sterile water, always check to make sure the medication is clear and colorless to pale yellow before using it. If it's cloudy, discolored, or has particles (solid pieces), don't use it. Contact your provider or pharmacist to see if it's possible to get a replacement. Don't throw away the vial because your pharmacist might ask you to return it.

Nulibry (fosdenopterin) vials are single-dose only. After mixing, you must give the medication within 4 hours. Throw away the remainder of the medication after each use, even if there's still medication left.

After giving your child the medication, throw away the syringe and needle in a sharps container or something made of heavy-duty plastic, such as an empty milk carton or laundry detergent bottle, to lower the risk of needle-stick injuries. Don't throw them away in your trash can. When your sharps container is almost full, close it tightly with the cap. For more information on how to throw away your sharps container safely and guidance for your specific state, visit the FDA's website.

Fill out the treatment log that comes with Nulibry (fosdenopterin) after each time you give a dose as well as any time there are dose changes by your provider. This will help make sure you stay organized and are using the correct dose. Bring the log to each follow-up visit with your provider.

Remember Nulibry (fosdenopterin) dose is based on your child's weight. Please measure your child's weight regularly and let your provider know of any changes so that if needed, your child's dose can be adjusted.