Sucraid (Sacrosidase) for CSID: What You Must Know
The treatment for congenital sucrase-isomaltase deficiency (CSID) involves the life-long dietary restriction of sucrose (sugar) and isomaltose (starch).
This can be challenging since most foods contain sucrose and isomaltose and identifying these foods isn’t always easy.
However, as an enzyme replacement therapy for sucrase, Sucraid (sacrosidase) eases these challenges and the uncomfortable digestive symptoms caused by the inability to break down sucrose.
This article explains everything you need to know about Sucraid for CSID, including how it works, its side effects, and its costs.
What is Sucraid (sacrosidase)?
Sucraid is an enzyme replacement therapy for the treatment of CSID, a genetic digestive condition that causes a deficiency in or absence of sucrase and isomaltase.
It has not been tested in people with secondary or acquired sucrose intolerance caused by inflammatory conditions that affect the small intestine like celiac disease or Crohn’s disease (1).
Sucraid acts as an enzyme replacement for sucrose — replacing what the body doesn’t naturally make.
In turn, Sucraid allows you to expand your food choices on a CSID diet and worry less about experiencing uncomfortable digestive symptoms like diarrhea, bloating, cramps, and excessive gas.
As a replacement for sucrose only, Sucraid does not contain isomaltase, so you must still monitor your intake of starch.
The dose of Sucraid depends on your body weight:
| Body Weight | Sucraid Dose |
|---|---|
| Children 33 pounds (15 kg) or less | 1 mL (28 drops) in 2 ounces of water, milk, or infant formula |
| Children or adults 33 pounds or more | 2 mL (56 drops) in 4 ounces of water, milk, or infant formula |
For children under 33 pounds, Sucraid comes in a translucent plastic bottle containing about 118 mL of concentrated solution, which is a pale yellow to colorless, clear solution with a sweet taste.
Each mL of solution contains 8,500 international units (IUs) of the sucrase-replacement enzyme sacrosidase. A 1 mL measuring scoop is provided with each package.
For patients who weigh over 33 pounds, Sucraid is provided in single-use containers with a total of 150 individual doses.
Avoid mixing Sucraid with warm liquids or juice since doing so can deactivate the enzymes, making them less effective.
Sucraid should be given with each meal or snack, with half the dose taken at the beginning and the other half taken during the meal or snack.
Summary
Sucraid (sacrosidase) is an enzyme replacement therapy for CSID. It replaces your body’s natural production of sucrase — but not isomaltase — so you can tolerate a higher sucrose intake without experiencing digestive symptoms.
Sucraid side effects
Randomized controlled trials suggest that Sucraid is generally well-tolerated.
However, Sucraid contains yeast, glycerin (glycerol), and papain from which some people have experienced severe allergic reactions.
Other reported side effects of Sucraid include (2):
- stomach pain
- nausea
- constipation
- headache
- dehydration
- vomiting
- diarrhea
- difficulty sleeping
- nervousness
Because Sucraid breaks sucrose down into simple sugars, it may increase blood sugar levels in people with diabetes or affect the effectiveness of diabetes medications.
The safety of Sucraid is unknown in pregnancy and while breastfeeding.
There are no known drug-drug or drug-food interactions with Sucraid.
Summary
Sucraid is generally well-tolerated but can cause allergic reactions in sensitive individuals. Sucraid may also cause stomach pain, constipation, vomiting, diarrhea, and difficulty sleeping, among other side effects.
Cost and how to get Sucraid
Sucraid is the only Food and Drug Administration (FDA)–approved enzyme replacement therapy for the treatment of CSID, so there are no alternatives.
It’s only available by prescription but it must be filled through a specialty pharmacy that ships the Sucraid to you or your prescribing physician.
I contacted this specialty pharmacy and was told that Sucraid costs around $13,000 but most private insurance plans cover the cost of Sucraid after your deductible is met.
Your deductible is the amount you pay for health care services or treatments before your insurance plan starts to pay.
I was also told by the pharmacy representative that Sucraid isn’t covered under Medicare, Medicaid, or TRICARE.
To get Sucraid, your physician must complete a Sucraid Prescription form and fax it to their pharmacy.
QOL Medical, the manufacturer of Sucraid, will then review your insurance plan — if you have one — and discuss financial information before scheduling monthly deliveries of Sucraid to your preferred address.
Summary
As the only FDA-approved enzyme replacement therapy for CSID, Sucraid is costly. Most private insurance plans cover Sucraid after you meet the deductible.
Sucrase doesn’t replace isomaltose
Sucrase is a replacement for your body’s production of sucrase but not isomaltase.
For this reason, you may still need to restrict isomaltose (starch) from your diet.
The level of restriction depends on your body’s production of isomaltase.
Some people with CSID have normal isomaltase enzyme levels while others may have low levels.
Foods that contain starch include:
- baked goods
- beans, peas, and lentils
- breads
- cereals
- corn
- crackers
- grains (wheat, oats, rice)
- pasta
- potatoes
- fried foods
Lactose intolerance tends to be common in people with CSID so you may also need to restrict dairy products (3).
Irritable bowel syndrome (IBS) and small intestinal bacterial overgrowth (SIBO) also commonly occur in people with CSID (4, 5, 6).
Learn more about the link between CSID and SIBO here.
Summary
Sucraid is a replacement for sucrase but not isomaltase. Thus, you will still need to restrict isomaltose (starch) based on your tolerance level.
The bottom line
Sucraid (sacrosidase) is an enzyme replacement therapy for sucrase prescribed for the management of CSID.
Taking it allows a more flexible diet and alleviates the uncomfortable digestive symptoms associated with sucrose malabsorption.
Sucraid is generally well-tolerated but it can cause allergic reactions in some people and diarrhea, constipation, and nausea, among other symptoms, in others.
Available only as a prescription from a specialty pharmacy, Sucraid is costly but most private insurance plans cover it after the deductible has been met.
Sucraid does not replace the enzyme isomaltase — which people with CSID also lack — so you will still need to restrict isomaltose (starch) based on what you can tolerate.
