Preparing and administering NULIBRY
NULIBRY must be prepared every day before you give it to your child. NULIBRY powder comes in vials that must stay frozen until ready to be used.1 A medical-grade freezer will be provided to you to ensure NULIBRY stays within the right storage temperature range until you are ready to use it.
Every day, the NULIBRY powder will be mixed (dissolved) into a liquid using Sterile Water for Injection. This solution is given to your child through a special access catheter or port placed by your child's healthcare provider.1
Detailed instructions for daily preparation and administration of NULIBRY can be downloaded and printed here.
NULIBRY will be delivered to your home by a specialty pharmacy. Keeping NULIBRY at the right temperature is very important. A temperature monitoring device inside the delivery box ensures it stays within the right temperature range—between -13°F and 14°F (-25°C and -10°C).1 If the temperature goes outside this range during transit, an alarm and a light will notify you. If this happens, call ForgingBridges | NULIBRY Access and Support immediately at 1-888-55BRIDGE (1-888-552-7434), Monday-Friday, 8 am-8 pm ET.
Each NULIBRY delivery comes with:
- A 28-day supply of NULIBRY powder. NULIBRY comes in clear glass vials containing 9.5 mg of fosdenopterin
- The full Prescribing Information and the Instructions for Use for NULIBRY
- A treatment log to keep track of your child's treatments that you will bring with you to each appointment with their healthcare provider. You can download and print additional copies here
Remember, NULIBRY should be put in the medical-grade freezer as soon as you get it.
NULIBRY must be stored in the medical-grade freezer provided to you. Keep the vials of NULIBRY in their original carton to protect them from light.1 A helpful tip: check the temperature of the −13°F to 14°F (−25°C to −10°C) freezer regularly to make sure it's working right. Use the temperature tracker included with your Caregiver Welcome Pack to record the temperature daily. You can also download and print additional trackers here.
Always store NULIBRY in the medical-grade freezer supplied to you.
In addition to the actual medicine, you will need other supplies and equipment to prepare and give your child NULIBRY daily. These items should be kept in a sterile environment and can be stored at room temperature. Work with your child's care team to determine which supplies you will need. They may include1:
- Sterile Water for Injection
- Sterile needles and syringes
- Alcohol wipes
- Gloves (optional)
- Intravenous (IV) administration set with non-DEHP tubing and a 0.2-micron filter
- Sharps disposal container
Always be sure to check your supplies, so you know when to order more.
Maintaining a germ-free environment is critical to help minimize the risk of infection. This includes maintaining a clean, sanitary, clutter-free preparation area away from children and pets. Specific instructions may be provided by your child’s care team.
When the area is clean, you can start preparing NULIBRY.1
A quick summary of how to prepare NULIBRY1:
- Gather vial(s) of NULIBRY and Sterile Water for Injection.
- Prepare vials.
- Assemble a syringe and add Sterile Water for Injection.
- Dissolve NULIBRY in the vial.
- Prepare and fill medicine syringes.
NULIBRY must be at room temperature to be given to your child. If needed, you can warm the vials by hand or by exposing them to room temperature for approximately 30 minutes. Do NOT shake NULIBRY and do NOT expose it to heat.1
Your child's healthcare provider will go over preparing and administering NULIBRY to your child in detail with you before you leave the hospital. You can also download and print the Instructions for Use for NULIBRY here.
Important things to remember
NULIBRY must be given within 4 hours of it being prepared. If this is not possible, liquid NULIBRY may be stored for up to 4 hours at room temperature between 59°F and 77°F (15°C and 25°C) or in a refrigerator between 36°F and 46°F (2°C and 8°C). If you wait more than 4 hours, throw away liquid NULIBRY without injecting it. Never freeze the vials of liquid NULIBRY. Any unused vials of liquid NULIBRY should be thrown away, even if there is anything remaining in them.1
Record the details of each infusion in the treatment log that came with your NULIBRY shipment. Click here to download and print additional copies.
What is the right dose for my child?1
- Your child’s dose of NULIBRY is based on their weight. Your healthcare provider will prescribe the amount of NULIBRY needed for each dose for your child
- The amount of NULIBRY needed for each dose and the number of vials needed to prepare each dose may change at each visit with your healthcare provider
- The dose will be measured as the amount (volume) of solution needed in milliliters (mL)
What should I do if my child misses a dose?
If your child misses a dose of NULIBRY, give the dose as soon as possible. Give the next scheduled dose at least 6 hours after finishing the infusion of the missed dose.
How do I keep track of my child's infusions?
Your NULIBRY shipment comes with a treatment log. Fill it out after every NULIBRY infusion. Bring your treatment log sheets to each follow-up appointment with your healthcare provider. You can print additional copies here.
How often is NULIBRY administered?1
NULIBRY should be administered daily, following the instructions from your child’s healthcare provider.
Who can I call if I have questions about NULIBRY?
Call ForgingBridges | NULIBRY at 1-888-55BRIDGE (1-888-552-7434), Monday-Friday, 8 am-8 pm ET. In the case of an emergency, call your healthcare provider immediately.
How should I throw away (dispose of) used needles and syringes?
Put your used needles and syringes in an FDA-cleared sharps disposal container right away after use. You may also use a leak-resistant household container that is made of heavy-duty plastic, can be closed with a tight-fitting, puncture-resistant lid, and properly labeled to warn of hazardous waste inside the container.
Do not dispose of your used sharps disposal container in your household trash unless your community guidelines permit this. Do not recycle your used sharps disposal container. Keep the sharps disposal container out of the reach of children.
For more information about safe sharps disposal, and for specific information about sharps disposal in the state that you live in, go to the FDA’s website at: http://www.fda.gov/safesharpsdisposal
Keep the sharps disposal container out of the reach of children.
What should I avoid during treatment with NULIBRY?
NULIBRY may cause skin reactions.
- Limit or avoid your child’s exposure or time in sunlight and artificial ultraviolet (UV) light, such as UVA or UVB phototherapy
- To help protect against sun exposure, wear clothing, a hat, and sunglasses that protect against sun exposure. If your child is 6 months of age or older, apply a broad spectrum sunscreen with high sun protection factor
Get medical help right away if your child develops a rash, or if you notice symptoms of a skin reaction, including: skin redness, blisters, or if your child feels like their skin is burning.
ForgingBridges | NULIBRY
Access and Support
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Always call your healthcare provider first with any questions or concerns.
- NULIBRY [prescribing information]. Boston, MA: Origin Biosciences, Inc.; February 2021.