Dosage and Administration

Please follow the dosing instructions for Sucraid carefully. The recommended dosage is as follows:

• 1 mL (8,500 IU; one full measuring scoop; use the white plastic scoop provided in your box of Sucraid) per meal or snack for infants, toddlers, and small children weighing up to 15 kg (33 lb)
• 2 mL (17,000 IU; two full measuring scoops) per meal or snack for older children and adults weighing over 15 kg (33 lb)

Each Sucraid dose should be diluted in 2 to 4 ounces of water, milk or infant formula. Sucraid can be measured with the white, plastic, 1-mL measuring scoop that is provided.

It is recommended that approximately half the dosage be taken at the beginning of each meal or snack and the remainder of the dosage taken during the meal or snack. Sucraid acts on the food you eat while it is in your gastrointestinal (GI) tract. Therefore, it is important that Sucraid be taken when you are eating.

The following should be noted with regards to administration, storage, and shelf life of Sucraid:

• Sucraid is a substitute for the missing sucrase enzyme, so it must be taken with every meal or snack to work. Half of each dose should be taken before a meal and the other half during a meal
• The beverage or infant formula used to dilute Sucraid should be served cold or at room temperature. Do not heat beverages containing Sucraid, or add Sucraid to hot beverages, as the heated fluid could decrease the potency of the enzyme
• Sucraid should be refrigerated at 36°F to 46°F (2°C to 8°C) and protected from heat and light
• Sucraid should not be consumed with fruit juices, as the acidity may impair enzyme activity
• Sucraid should not be taken directly from the bottle or measuring scoop without first diluting in water, milk, or infant formula
• Discard bottles of Sucraid four weeks after first opening, because, as with all proteins, there is the potential for bacterial growth

If you still have some symptoms after starting therapy with Sucraid, your doctor may recommend avoiding starchy foods for several weeks and then gradually adding back foods containing starch while monitoring your GI symptoms.

Sucraid should be kept refrigerated at 36°F to 46°F (2°C to 8°C) and should be protected from heat and light. For this reason, traveling with Sucraid can be difficult. Parents and caregivers of patients with Congenital Sucrase-Isomaltase Deficiency (CSID) have used a variety of techniques to facilitate travel with Sucraid.

Common travel ideas for transporting a Sucraid bottle are:

• A cooler with reusable ice gel packs or ice blocks (the bottle should be wrapped in an insulated lunchbox or protective compartment so Sucraid will not freeze completely if using dry ice)
• Insulated lunchboxes with reusable ice gel packs or ice blocks
• Medical coolers
• A wide-mouthed thermos-type bottle, packed with ice
• Insulated bags intended for baby bottles
• Insulated bags with coolant inside that allows the entire bag to be frozen before inserting the Sucraid bottle

Traveling by plane with Sucraid can also prove to be challenging. The U.S. Transportation Security Administration (TSA) permits “prescription liquid medications and other liquids needed by persons with disabilities and medical conditions. This includes all prescription and over-the-counter medications. This also includes gels or frozen liquids needed to cool disability- or medically-related items used by persons with disabilities or medical conditions.” Sucraid can go through the X-ray machine as part of the security process without the scan affecting the ability of Sucraid to continue working.

People have found that the burden of traveling with Sucraid is reduced when a physician provides them with a Letter of Medical Necessity. The Letter of Medical Necessity should include the following information:

• Patient’s name
• Patient’s date of birth
• Patient’s diagnosis of CSID
• Patient’s need for therapy with Sucraid
• The need for Sucraid to be refrigerated/maintained at 36°F to 46°F (2°C to 8°C)
• The need for any ice gel packs or ice blocks to be kept with the Sucraid at all times

Traveling with Sucraid poses some unique challenges. For longer trips, it is advised to find out if your destination has a refrigerator available.

Please click this link to access a sample Letter of Medical Necessity to use during travel, which patients can bring to their healthcare provider for his/her signature.