How to take Evrysdi

Are you starting Evrysdi? Congratulations! You’re part of a large community of people with SMA who, together with their doctors, have chosen the only oral, at-home, non-invasive treatment option.

So, what should you expect? Let’s take a look.

Okay, so how do you get started? The good news is Evrysdi is delivered directly to your door each month.

A specialty pharmacy will call you to schedule a delivery time that works best for you. 

The package you receive will include all the medicine and supplies you’ll need for approximately one month based on your prescribed dose.

If your order arrives incomplete, has broken bottles, is damaged in any way or the medicine is powder instead of a liquid, don’t take it: call your specialty pharmacy right away for a replacement.

Store your Evrysdi upright in the refrigerator with the cap tightly closed. Never freeze it or put it in a different container, and always keep it out of the reach of children.

If refrigeration is not available, Evrysdi can be kept at room temperature, up to 104 degrees Fahrenheit, for a combined total of 5 days. Throw away any Evrysdi that has been kept above 104 degrees. 

Evrysdi is good for 64 days after it has been prepared for you by a pharmacist. If you don’t see a “Discard After” date on the bottle label, just ask your pharmacist. Throw away any unused medicine after 64 days.

Evrysdi can be taken at home, at work, out on the town, or when traveling. Contact your PAL (Partnership and Access Liaison) to get an Evrysdi travel cooler and tips for traveling with your medicine. 

No matter where you take your Evrysdi, be sure to take it once a day after a meal, followed by a sip of water, at approximately the same time each day. It can be helpful to set reminders on your phone or calendar, and to take Evrysdi around a common task, like after a meal, so it can just become part of your routine.

To take your Evrysdi, first prepare the syringe. Remove the child-resistant cap by pushing it down and then twisting it to the left counterclockwise. Set the cap aside, but don’t throw it away!

Next, push the plunger of the syringe all the way down to remove any air inside. Then, place the Evrysdi bottle on a flat surface. While keeping the bottle upright, insert the syringe tip into the bottle. 

Carefully turn the bottle upside-down and slowly pull back on the plunger to withdraw the prescribed dose.

The top of the black stopper must line up with the milliliter marking on the syringe that aligns with your dose. 

Remember…your dose is based on age and weight. Always take the exact dose prescribed by your doctor.

Next, hold the plunger in place to keep it from moving and turn the bottle upright again. Place it onto a flat surface and remove the syringe. 

Before taking Evrysdi, don’t forget to check for any air bubbles. If you see any, insert the syringe tip firmly into the bottle again and use the plunger to push the medicine back in. Then, repeat the steps to fill the syringe again. 

Once filled, the syringe must be used within 5 minutes. If 5 minutes have passed, throw away the Evrysdi liquid into the household trash, keeping the syringe, and prepare a new dose. 

Once you have the correct dose ready to go, don’t forget to put the cap back on the bottle and turn it to the right clockwise to tightly close it before returning your Evrysdi to the refrigerator.

If there isn’t enough Evrysdi left in the bottle for your next dose, throw away the bottle with the remaining medication. Never take a partial dose or mix Evrysdi from an old and new bottle.

To prevent choking when taking Evrysdi by mouth, the person should be sitting upright. 

Place the tip of the syringe into the mouth touching the inside of either cheek. Slowly push the plunger all the way down until all the medication is emptied.

Then drink about a tablespoon of water to make sure all the medication has been swallowed. 

Never mix Evrysdi into foods or liquids.

Evrysdi can also be taken through a gastrostomy tube.

Once the prescribed dose is ready, place the tip of the syringe into the G- or NG-tube. 

Slowly push the plunger all the way down, until there’s no medication left in the syringe.

Flush the feeding tube with about 2 to 4 teaspoons of water.

No matter how Evrysdi is taken, the oral syringe can be reused. Just separate the barrel and plunger by pulling the plunger away from the syringe tip until it comes out completely. 

Rinse both pieces thoroughly with water under a faucet by hand, and place both parts on a clean surface to dry. Then wash your hands with soap and water.

If the dose is spit up or not fully swallowed, just wait until the following day at the usual dosing time.

If you miss a dose, take it as soon as possible, but no more than 6 hours after the usual dosing time. If 6 hours have passed, just wait until the next day.

That’s it! Now you’re ready to make Evrysdi part of your everyday routine.

Remember, before starting Evrysdi, talk to your doctor about your goals and a plan to track your results, as well as how to handle any side effects you may experience.

Everyone reacts differently when starting a new treatment. Side effects can be impacted by a number of elements, including other medications you may be taking, so be sure to tell your doctor about all over-the-counter and prescription medications before starting treatment and call your doctor right away if you experience any side effects.

Two common side effects when starting Evrysdi are diarrhea and rash. In clinical studies, 17% of adults and children taking Evrysdi experienced diarrhea, with a similar frequency in infants. The majority of the cases (8 out of 10) lasted less than 1 week, and 1 out of 10 cases lasted longer than 2 weeks.

If you experience diarrhea, you can consider: 

• Drinking more fluids 

• Avoiding juices or foods that have a laxative effect, like prunes or prune juice 

• Eating semisolid and low-fiber foods gradually, such as soda crackers, toast, eggs, rice, or chicken 

• And avoiding dairy products, fatty foods, high-fiber foods, or highly seasoned foods for a few days

If you experience rash, you may consider: 

• Using moisturizer or lotions 

• Taking a cool bath 

• Avoiding harsh soaps 

• Using cortisone cream to relieve swelling if it’s not infected

• And avoiding wearing tight clothing 

Always call your doctor right away if you experience any side effects.

Most people have a lot of questions in the first year of treatment as they transition to a new routine, and even during the months that follow. It’s a good idea to familiarize yourself with all the resources available to you, and to check in often.

Don’t forget: no matter your question, there is support here to help you along the way:

• If you have questions about your treatment, always go to your doctor first. 

• Your specialty pharmacy can help with questions about delivery.

Your PAL can help you explore financial support, plan for travel, point you in the right direction if you’re not sure who to call, and connect you to useful resources. If you haven’t connected with a PAL yet, you can find the name and contact information for your local PAL at Evrysdi.com/PAL.

Welcome to life in action with Evrysdi.