betaine
Betaine (Cystadane) is a medication used to relieve symptoms of a genetic condition known as homocystinuria caused by high levels of an amino acid called homocysteine. Betaine (Cystadane) comes in powder form to be mixed with liquid or food. It's available as a brand-name or a lower-cost generic medication.
What is Betaine (Cystadane)?
What is Betaine (Cystadane) used for?
- High levels of homocysteine (homocystinuria)
How Betaine (Cystadane) works
Betaine (Cystadane) is approved for use in people with homocystinuria, a condition in which the body doesn't break down homocysteine normally. Homocysteine is an amino acid that's common in the body, but it's possible to have too much of it in your blood, which can lead to health problems.
Betaine (Cystadane) is a methylating agent. It adds a specific molecule (methyl group) to homocysteine. This causes homocysteine to change to another amino acid called methionine. Doing so avoids the homocysteine build up to dangerous levels in the blood.
Drug facts
Side effects of Betaine (Cystadane)
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.
Common Side Effects
- Nausea
- Stomach discomfort
- Diarrhea
Less Common Side Effects
- Weight loss
- Mood changes
- Sleep problems
- Dental problems
- Vomiting
- Hives
- Hair loss
Betaine (Cystadane) serious side effects
Contact your healthcare provider immediately if you experience any of the following.
- Brain swelling: weakness, vision changes, headaches, nausea, vomiting, confusion, coma, seizure
The following Betaine (Cystadane) side effects have also been reported
Along with its needed effects, a medicine may cause some unwanted effects. Although not all of these side effects may occur, if they do occur they may need medical attention.
Some side effects may occur that usually do not need medical attention. These side effects may go away during treatment as your body adjusts to the medicine. Also, your health care professional may be able to tell you about ways to prevent or reduce some of these side effects. Check with your health care professional if any of the following side effects continue or are bothersome or if you have any questions about them:
Betaine may cause a body odor. Other side effects not listed above may also occur in some patients. If you notice any other effects, check with your doctor.
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Pros and cons of Betaine (Cystadane)
Pros
- Can be used in young children
- Powder can be mixed with liquid or food
- Can improve symptoms like seizures and behavior problems
- Provider can adjust your dose based on how you respond to the medication
- Available as a lower-cost generic medication
Cons
- Potential to cause brain swelling in some people
- Not a cure for homocystinuria
- Typically must be taken twice a day
- Must be measured with a specific scoop
- Must be taken right away after mixing, can't pre-mix doses
Pharmacist tips for Betaine (Cystadane)
- Make sure you read the instructions for use before using betaine (Cystadane).
- To start, shake the bottle of betaine (Cystadane) gently before removing the cap to measure your dose. One level scoop of powder is equal to 1 gram of betaine (Cystadane). Your provider will tell you how many scoops to use. Only use the provided scoop to measure your dose. Using another type of scoop or spoon to measure the powder out won't give you an accurate dose.
- Mix betaine (Cystadane) powder with 4 to 6 ounces of water, juice, milk, or formula and let it dissolve completely. You can also mix betaine (Cystadane) with food. You (or your child) should take it right away after mixing.
- People taking betaine (Cystadane) will also often follow a low protein and low methionine diet. Also, treatments for homocystinuria might include vitamin B6 (pyridoxine), vitamin B9 (folic acid), and vitamin B12 (cyanocobalamin). Ask your provider if these treatments might help with your symptoms of homocystinuria.
- Some people with homocystinuria might opt for surgery to correct certain bone or eye problems. Homocystinuria puts you at a higher risk of blood clots, and blood clots can happen after surgery since you aren't moving around as much. Be sure to follow all of your provider's instructions after surgery and report any signs of blood clots to your provider right away.
Common questions about Betaine (Cystadane)
Homocystinuria is a rare, inherited condition in which too much homocysteine builds up in the body. When homocysteine builds up in the blood, it can cause problems for many parts of the body, including the eyes, brain, bones, and blood vessels. This can result in vision problems, delays in reaching developmental steps like sitting, standing, walking, and speaking, behavior or intellectual problems, skeletal problems, blood clots, and seizures.
No, there is no cure for homocystinuria. But betaine (Cystadane) can help improve and prevent symptoms of this condition.
Most likely. People who participated in the clinical studies with betaine (Cystadane) were also taking other treatments like vitamin B6 (pyridoxine), vitamin B12 (cyanocobalamin), and vitamin B9 (folate). The specific type of treatment depends on the cause of your homocystinuria. Discuss with your provider about any other treatments you'll need to take for your homocystinuria.
Homocysteine levels in the blood will typically start to lower after the first several days of taking betaine (Cystadane). Your provider will check the levels of homocysteine in your blood regularly to see how well betaine (Cystadane) is working, and they might adjust your dose, if needed. It takes about a month of taking this medication for your body to reach a steady, normal level of homocysteine.
Betaine hydrochloride (HCl) is an acidic form of betaine, and it has a completely different use than betaine (Cystadane) (the anhydrous form). Unlike betaine (Cystadane), betaine HCl doesn't lower homocysteine levels in people with homocystinuria. The most common use for betaine HCl is to make the stomach more acidic in people who don't produce enough stomach acid. This can help improve digestion and symptoms of indigestion. Betaine HCl might also be given to improve the absorption of medications from the stomach. Betaine HCl can be found in certain supplements that promote digestion and absorption.
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Risks and warnings for Betaine (Cystadane)
Betaine (Cystadane) 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.
High levels of methionine (hypermethioninemia)
- Risk factors: Homocystinuria caused by CBS deficiency
Betaine (Cystadane) breaks down homocysteine into another amino acid known as methionine. If too much methionine collects in the blood, it can lead to brain swelling. This is especially important in people who have a specific type of homocystinuria called cystathionine beta-synthase (CBS) deficiency. This is because people with CBS deficiency naturally have high methionine levels. Higher levels of methionine and severe brain swelling have been reported within 2 weeks to 6 months after starting treatment with betaine (Cystadane). Brain swelling typically goes away after this medication is stopped.
If you notice any signs of brain swelling including weakness, vision changes, headaches, nausea, vomiting, confusion, coma, or seizure, get medical help right away. If you have CBS deficiency, your provider will monitor you more regularly to make sure levels of methionine don't get too high.
Betaine (Cystadane) dosage
Bottle of powder| Dosage | Quantity | Price as low as | Price per unit |
|---|---|---|---|
| 180g | 1 bottle | $437.13 | $437.13 |
Typical dosage for Betaine (Cystadane)
-
Adults and children ages 3 years and older: The typical dose is 3 grams by mouth twice daily.
-
Children under 3 years old: The dose is calculated based on your child's weight. The typical starting dose is 50 mg/kg by mouth twice daily. The dose can be raised by your child's provider each week by 50 mg/kg, if needed.
Interactions between Betaine (Cystadane) and other drugs
Although certain medicines should not be used together at all, in other cases two different medicines may be used together even if an interaction might occur. In these cases, your doctor may want to change the dose, or other precautions may be necessary. Tell your healthcare professional if you are taking any other prescription or nonprescription (over-the-counter [OTC]) medicine.
