What to expect on infusion day.

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Now that your treatment plan is in place, you’re ready to begin treatment with EXONDYS 51. Interested in at-home infusions? Hear from Ash about his experience.

Get ready for treatment.

Because EXONDYS 51 is given through a weekly intravenous (IV) infusion, you may have some questions about what you can expect and how you should prepare.

 

Questions?

Give us a call.
 


1-888-SAREPTA

1-888-727-3782
Case Managers are available Monday – Friday
8:30am – 6:30pm ET

 

Time

How long does an infusion take?

The infusion itself will usually take about 35 to 60 minutes. Plan on some extra time for preparing the IV and medicine. If your child experiences any side effects from the medicine, your doctor or nurse may need to slow or stop the infusion.

Plan

We’re going to an infusion center—how should I plan for that?

Usually, you'll need to plan time for check-in, starting the IV, and preparing and infusing the medicine. It’s a good idea to save the travel instructions to your phone or print them out in advance.

Home

How do I get ready for a home infusion?

Check with the home infusion nurse for information about how to get ready for your child's infusion.


Ask your healthcare provider if there are any other considerations you should be aware of.

 

Billy small

Infusion day tips. Keep your child’s favorite comfort item close by and be sure they have a book, movie, or game to help the time pass more quickly. If you’re traveling to your infusion location, allow extra time for traveling, finding a parking spot, and getting your child inside. Arriving on time will make for a more comfortable infusion day—for everyone.

At-home infusions with Ash

Every patient has unique needs and routines. For Ash, being able to have his infusions at home—with his own schedule in mind—was a relief. Watch to learn more about his experience.

Infusion step-by-step.

Here’s what you can expect when it’s time for your child’s infusion.

Infusion 1


The nurse may take your child’s vital signs: pulse, temperature, and blood pressure.

Infusion 2


The nurse will prepare the access site and may apply a local anesthetic. If using an IV, the nurse will apply a tourniquet and insert the IV through a needle. If using a port, the nurse will use a needle to access the port.

Infusion 3


The medicine is added to the infusion bag, a 0.2 micron in-line filter is added to the IV tubing, and the infusion is started.

Infusion 4


When the infusion is complete (usually after 35–60 minutes), the tubing is flushed with saline to ensure that all medication is received.

Allergic reactions, including wheezing, chest pain, cough, rapid heart rate, and hives have occurred in patients who were treated with EXONDYS 51. Seek immediate medical care if signs and symptoms of allergic reactions occur.

Next: Learn how to stay informed and get ongoing support. 
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“The advice I would give others about infusion is to take your time to think about what the best solution is for you.”

–Ash, EXONDYS 51 patient

 

Your doctor will discuss the options that might be right for you.

Ash

Related FAQs

What happens if I miss an infusion?

Talk to your healthcare provider. If you miss a dose of EXONDYS 51, it may be administered as soon as possible after the scheduled time.

See All FAQs

Read More

 

WHAT IS EXONDYS 51 (eteplirsen)?

EXONDYS 51 is used to treat patients with Duchenne muscular dystrophy (DMD) who have a confirmed mutation in the dystrophin gene that can be treated by skipping exon 51.

EXONDYS 51 was approved under accelerated approval. Accelerated approval allows for drugs to be approved based on a marker that is considered reasonably likely to predict a clinical benefit. EXONDYS 51 treatment increased the marker, dystrophin, in skeletal muscle in some patients. Verification of a clinical benefit may be needed for EXONDYS 51 to continue to be approved.

Read More

IMPORTANT SAFETY INFORMATION

Hypersensitivity Reactions: Allergic reactions, including wheezing, chest pain, cough, rapid heart rate, and hives have occurred in patients who were treated with EXONDYS 51. Seek immediate medical care if signs and symptoms of allergic reactions occur.

Adverse Reactions: Side effects that have occurred at least 25% more often in patients treated with EXONDYS 51 than in patients treated with an inactive intravenous (IV) infusion were problems with balance (38%, 0%), vomiting (38%, 0%), and skin irritation (25%, 0%). The most common side effects were problems with balance and vomiting.

The most common side effects that occurred in greater than 10% of patients receiving EXONDYS 51 in other clinical trials were headache, cough, rash, and vomiting.

What do I do if I have side effects? 

Ask your healthcare provider for advice about any side effects that concern you.

You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch or call 1-800-FDA-1088. You may also report side effects to Sarepta Therapeutics at 1-888-SAREPTA (1-888-727-3782).

The information provided here does not include all that is known about EXONDYS 51. To learn more, talk with your healthcare provider.

Before receiving this infusion, please see the full Prescribing Information for EXONDYS 51 (eteplirsen).