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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.

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.

Logo for SareptAssist, the patient support program for EXONDYS 51 patients

1-888-SAREPTA

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

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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.

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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.

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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.

EXONDYS 51 patient Billy, age 14, standing with his arms at his side

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.

Ash’s journey to infusion.

Every patient’s treatment journey is different. For Ash, having his infusions at home makes the most sense. Take a look at his experience.

Meet Ash

Infusion step-by-step.

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

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

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

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The medicine is added to the infusion bag and the infusion is started. 

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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 rash, hives, fever, flushing, cough, difficulty breathing, wheezing, and low blood pressure have occurred in patients who were treated with EXONDYS 51. Seek immediate medical care if signs and symptoms of allergic reactions occur.

Questions?

Give us a call.

SareptAssist

1-888-SAREPTA

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

“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.

EXONDYS 51 patient Ash, age 21, with trees in background.
Meet Ash
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

WHAT IS EXONDYS 51® (eteplirsen)?

EXONDYS 51 is used to treat Duchenne muscular dystrophy (DMD) in patients 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 that has not been proven. 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.

IMPORTANT RISK INFORMATION

Allergic reactions, including rash, hives, fever, flushing, cough, difficulty breathing, wheezing, and low blood pressure have occurred in patients who were treated with EXONDYS 51. Seek immediate medical care if signs and symptoms of allergic reactions occur.

Side effects that happened at least 25% more often in 8 patients treated with EXONDYS 51 by intravenous infusion than in 4 patients treated with an inactive intravenous 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.

In patients who received EXONDYS 51 for up to 4 years in clinical studies, the following side effects were reported in at least 10% of patients and occurred more often than at the same dose of EXONDYS 51: vomiting, bruising, scratches, joint pain, rash, IV site pain, and infections of the upper airways.

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).

READ MORE

WHAT IS EXONDYS 51® (eteplirsen)?

EXONDYS 51 is used to treat Duchenne muscular dystrophy (DMD) in patients 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 that has not been proven. 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.

IMPORTANT RISK INFORMATION

Allergic reactions, including rash, hives, fever, flushing, cough, difficulty breathing, wheezing, and low blood pressure have occurred in patients who were treated with EXONDYS 51. Seek immediate medical care if signs and symptoms of allergic reactions occur.

Side effects that happened at least 25% more often in 8 patients treated with EXONDYS 51 by intravenous infusion than in 4 patients treated with an inactive intravenous 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.

In patients who received EXONDYS 51 for up to 4 years in clinical studies, the following side effects were reported in at least 10% of patients and occurred more often than at the same dose of EXONDYS 51: vomiting, bruising, scratches, joint pain, rash, IV site pain, and infections of the upper airways.

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).

Please see the full Prescribing Information for EXONDYS 51 (eteplirsen).