Relyvrio is a combination medication containing sodium phenylbutyrate and taurursodiol. It's FDA-approved to help slow down the worsening of symptoms in people with amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s disease. It appears to lengthen life expectancy for people with ALS, but a larger clinical trial is still being conducted to confirm this. Relyvrio comes as a packet of powder that you mix with water and take by mouth or through a feeding tube. Common side effects include diarrhea, stomach pain, nausea, and sometimes a bitter taste in your mouth after you take the medication.
Relyvrio is a combination of two medications, sodium phenylbutyrate and taurursodiol. While it's not fully known how it works to treat ALS, researchers think this medication helps stop neurons (brain cells) from dying.
The following side effects may get better over time as your body gets used to the medication. Let your healthcare provider know immediately if you continue to experience these symptoms or if they worsen over time.
Relyvrio comes in packets of powder that need to be mixed with 8 oz (or 1 cup) of room-temperature water before taking your dose. Don't take the medication directly from the packet without mixing it with water first. Once mixed with water, make sure to take your dose within 1 hour. The mixture can be taken by mouth or through a feeding tube. Relyvrio is best taken before a snack or meal.
No. There's currently no cure for ALS, but there are medications, like Relyvrio, available that might slow the worsening of symptoms. These medications can help people with ALS have a better quality of life. Unfortunately, Relyvrio won't bring back any motor function you've already lost. Discuss the different treatment options with your provider.
At the end of a 6-month study of 137 people with ALS, people treated with Relyvrio had better daily functioning than people who took a placebo. Characteristics of daily functioning that were studied included people's abilities to talk, swallow, write by hand, cut food, walk, and more. Additionally, the study suggests that Relyvrio might give people with ALS more time to live, but more research is needed. There's a study that's currently going on looking at how safe the medication is and how well Relyvrio works to treat ALS in a larger group of people. This larger study is expected to end in 2024.
Relyvrio can interact with aluminum-based antacids (e.g., Mylanta, Gaviscon). These antacids can can lower how much Relyvrio your body absorbs. This could cause Relyvrio to work less well for you. It's recommended that you avoid aluminum-based antacids while you're taking Relyvrio. Other antacids, like Tums, aren't known to interact with Relyvrio. It's important to tell your pharmacist or provider about all of your medications before starting treatment and before taking anything new. They can help check if your medications are safe to take together with Relyvrio. If you need to take an antacid while you're taking Relyvrio, ask your pharmacist for recommendations that are safe for you.
It's recommended to only mix Relyvrio in room temperature water for your dose. But the medication can have a bitter aftertaste. To help with this aftertaste, there are a few things you can try. You could try using a mint-flavored mouth spray right before or after taking your dose. You could also drink milk or eat some honey right after taking your dose. It's recommended to eat a snack or meal right after your dose, which could help with the aftertaste too. But avoid drinking fruit juice right after your dose since this could actually make the bitter aftertaste of Relyvrio worse.
Relyvrio commonly causes stomach side effects, like diarrhea, nausea, and stomach pain. But there are a few things you can do to help manage them. If you have diarrhea or feel nauseous and end up vomiting, make sure to drink plenty of fluids. This helps prevent dehydration that can happen if you have episodes of diarrhea or vomiting. Avoiding spicy or fried foods and eating a meal after your dose can help with stomach upset. You can also try ginger or peppermint to help with nausea, if your provider says it's okay to do so. In clinical studies, these side effects occurred more often during the first 3 weeks of treatment. This suggests they might get better over time. If you're having bothersome side effects, talk with your provider about ways to help manage them.
Always discuss your medical history with your provider so they can make sure Relyvrio is safe for you to take. In general, you can take Relyvrio if you have mild kidney or liver problems. But if you have moderate or severe kidney or liver problems, it's recommended that you avoid this medication. Discuss the risks and benefits of taking Relyvrio with your provider. In some cases, they might be able to check your liver and kidney health during treatment.
Both medications help slow the worsening of ALS, but there are some differences. For one, Relyvrio is only available as a powder that you mix with water and take by mouth or through a feeding tube. On the other hand, Radicava (edaravone) is available in two forms: a liquid that can be taken by mouth or through a feeding tube and an injection through the veins (intravenous, IV). Also, Relyvrio is generally taken twice a day, whereas Radicava (edaravone) is taken once a day. Additionally, Radicava (edaravone) is taken in treatment cycles with two-week breaks in between each cycle, but Relyvrio is typically taken continuously without any breaks. Follow up with your provider for more information on ALS treatments. They can help find the best treatment option for you.
Relyvrio can cause some serious health issues. This risk may be even higher for certain groups. If this worries you, talk to your doctor or pharmacist about other options.
If you have a medical condition that interrupts the flow of bile acid in your body (e.g., gallbladder problems), then taking Relyvrio can cause you to have worsening diarrhea. This is because Relyvrio contains a bile acid (taurursodiol), which can build up in your gut. In addition, if you have other problems related to the pancreas or intestines (e.g., malabsorption), your body might have trouble absorbing Relyvrio. This means that this medication won't work as well for you. Let your provider know if you have any of the conditions listed above. If you experience new or worsening diarrhea, contact your provider.
Relyvrio contains a high amount of salt; each packet contains 464 mg of sodium. Too much salt could worsen certain medical conditions, like heart failure, high blood pressure, and kidney problems. Discuss your full medical history with your provider so they can help decide if Relyvrio is safe for you to take. In some cases, you might need to keep a closer eye on your salt intake while you're taking Relyvrio.
Each packet contains 3 grams of sodium phenylbutyrate and 1 gram of taurursodiol.
The typical starting dose is 1 packet mixed with 8 oz (or 1 cup) of water once daily for 3 weeks. The mixture is taken by mouth or through a feeding tube. After the first 3 weeks, your provider will raise your dose to 1 packet taken twice daily.