Frequently Asked Questions Regarding Sucraid® (sacrosidase) Oral Solution

  1. What is Sucraid®?

    Sucraid® (sacrosidase) Oral Solution is an FDA-approved drug for use as an oral enzyme replacement therapy for genetically determined sucrase deficiency, which is part of Congenital Sucrase-Isomaltase Deficiency (CSID). Sucraid® replaces the activity of sucrase, which is the digestive enzyme that breaks down sucrose (table sugar). Sucraid® may lessen the gastrointestinal (GI) symptoms associated with CSID.

  2. How much and how often do I need to take Sucraid®?

    You should take Sucraid® the way it was prescribed by your doctor. The recommended dosage is 1 mL (1 full measuring scoop) per meal or snack for patients who weigh up to 15 kilograms or 33 pounds, and 2 mLs (2 full measuring scoops) per meal or snack for patients that weigh over 15 kilograms or 33 pounds. Each dose of Sucraid® should be mixed in 2 to 4 ounces (60 to 120 mLs) of water, milk, or infant formula. Half of the mixture is taken before the start of the meal or snack and the other half of the mixture is taken about halfway through the meal or snack. Do not mix Sucraid® with fruit juice or hot beverages as they may reduce the effectiveness of Sucraid®.

  3. Once I take a dose of Sucraid®, how long does it remain active?

    The length of time that Sucraid® remains active during a meal may vary depending on several factors, such as how long it takes for your stomach to empty and what you had to eat. If your meal lasts longer than an hour, you may need to take another dose. Sucraid® isn’t absorbed into the body, so it can’t be stored up for later, which is why you need to take it each time you eat.

  4. I read that Sucraid® should not be heated or mixed in hot beverages. Can I drink hot beverages like coffee or tea with my meal?

    Sucraid® should not be heated since heating may deactivate the enzyme and reduce its effectiveness. Sucraid® should be mixed in cold or room-temperature water, milk, or infant formula. To be safe, hot beverages should not be consumed until the end of the meal.

  5. How do I take Sucraid® when I’m away from home, at school, or at work?

    There are several options for transporting Sucraid® when you are away from home. You may speak with a Sucraid® specialist at One Patient Services (OPS) or a pharmacist at US Bioservices to learn how to safely transport Sucraid®.

  6. Since Sucraid® has to be refrigerated, how can I travel with it?

    Suggestions for traveling with Sucraid® can be found on the Sucraid® website: https://www.sucraid.com/taking-sucraid/. When traveling by plane, it is best to plan ahead. You may want to call the Transportation Security Administration (TSA) for any special requirements for taking Sucraid® on an airplane. A Letter of Medical Necessity for traveling with Sucraid® can be found on the Sucraid® website. Have your doctor sign a copy of the letter for you to take with you through airport security. It is safe for Sucraid® to pass through the X-ray machine at the security gate.

  7. Will my insurance cover the cost of Sucraid®?

    Every patient’s situation is different. To learn more, you may speak with a representative at US Bioservices at 1-833-800-0122.

  8. Will I have to take Sucraid® for the rest of my life?

    You should discuss this question with your doctor. Most people need to continue using Sucraid® in order to replace the digestive activity of the deficient sucrase, which helps digest sucrose and avoids or lessens GI symptoms associated with CSID. As people gain more experience with their diet, they may not need to use Sucraid® with every meal or snack.

  9. Most of the information about CSID talks about diarrhea. I don’t have diarrhea. Will Sucraid® still help me?

    Sucraid® replaces sucrase, which helps break down sucrose to prevent the symptoms associated with poorly digested (malabsorbed) sucrose, which may cause a variety of GI symptoms associated with CSID, not just diarrhea. Some patients with CSID do not have diarrhea, but may complain of excessive gas, bloating, stomach pain, reflux, burping, or constipation.

  10. Will taking Sucraid® allow me to eat anything I want?

    Every person with CSID is different, but most people need to make some changes to their diet to avoid experiencing any GI symptoms. Sucraid® replaces the digestive activity of sucrase and helps digest sucrose (table sugar), but does not replace isomaltase, an enzyme that helps digest starch. For that reason, most patients need to adjust the amount of starchy food they eat. QOL Medical, LLC/OPS has a registered dietitian on staff who is available at 1-800-705-1962 to assist patients with diet and Sucraid® therapy.

  11. Are there people who should not take Sucraid®?

    People who are allergic to or have a sensitivity to yeast, glycerin (glycerol), or papain should not take Sucraid®. People with diabetes may take Sucraid® but should speak with their doctor before starting the first dose. Since Sucraid® helps break down sucrose into glucose and fructose, there could be changes in their blood glucose levels.

  12. Are there any side effects from taking Sucraid®, and is it possible to overdose on the medication?

    Please see the package insert for a full listing of possible side effects. If you experience any suspected side effects from Sucraid®, you should stop using Sucraid® and speak with your doctor. Sucraid® is not absorbed into the body but passes through the GI tract and is then excreted. There have been no reports of overdosing with Sucraid®; however, you should always take Sucraid® as prescribed by your doctor. If you have any questions about your medication dosing, please consult your prescribing physician or US Bioservices at 1-833-800-0122.

  13. If I keep Sucraid® refrigerated, why does it have to be discarded after it has been opened for more than 1 month? Does it go bad?

    Sucraid® does not contain any preservatives. So, once the bottle has been opened, it should be discarded after 4 weeks to avoid the potential for bacterial growth.

  14. I accidentally left my Sucraid® bottle on the counter overnight. Should I throw it out?

    If Sucraid® is accidently left out of the refrigerator at room temperature (up to 80°F) and was not in direct sunlight, you may put it back in the refrigerator and continue using it. If the bottle was left out longer than 24 hours, in direct sunlight or in temperatures above 80°F, it should be thrown away. If the bottle is accidentally left out a second time overnight at room temperature, it should be thrown away. In other words, a bottle of Sucraid® can only be left out overnight at room temperature one time before it should be discarded.

  15. Will Sucraid® interact with any of the medications I take?

    There are currently no known drug-drug interactions with Sucraid®.

  16. How do I administer Sucraid® when feeding with breastmilk?

    There is no sucrose in breastmilk, so you do not need to administer Sucraid® when feeding your baby breastmilk. The sugar in breastmilk comes from lactose.

  17. I really want to find an expert on CSID. Are there clinics or physicians who specialize in this condition?

    There is a doctor directory that includes physicians who are familiar with CSID that can be accessed here: https://tinyurl.com/y7med2lx

  18. My child takes Sucraid®. Other family members have similar symptoms. Should we be tested? How do we get genetic testing?

    You should contact your physician to review your options. As CSID is a genetic disease, there is the possibility that other family members may be living with CSID as well. There are tests that can be ordered by your doctor to help determine whether you and other family members have CSID.

  19. Are there any long-term, adverse effects of using Sucraid®?

    Please consult the package insert to find information about adverse events that have been experienced by patients taking Sucraid®. QOL Medical is not aware of any long-term, adverse effects of using Sucraid®.

  20. Is diet important for patients taking Sucraid®?

    Yes. Diet and Sucraid® therapy are both important for the treatment of CSID. The goal with diet and Sucraid® therapy is to return to as near normal a diet as possible without experiencing the GI symptoms associated with CSID. You may speak with a registered dietitian at OPS to learn more about the diet modifications that may be best for you.

  21. Having a lifelong disorder and using Sucraid® seems a bit overwhelming. Do you offer any resources for support?

    QOL Medical has a peer coach who can provide empathy and support from an experienced caregiver perspective. QOL Medical also has extensive information regarding CSID and managing the disease through therapy, which is available at www.SucraidASSIST.com.