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Overview

Tetrabenazine (Nitoman®) belongs to a group of medications called monoamine depleting agents.

What is Tetrabenazine Used For?

Tetrabenazine is commonly used in the treatment of movement disorders such as motor and vocal tics and in patients with Tourette syndrome. Tetrabenazine is sometimes used for other movement disorders such as Huntington’s chorea, tardive dyskinesia and dystonia. Your doctor may be using this medication for another reason. If you are unclear why this medication is being prescribed, please ask your doctor.

How Does Tetrabenazine Work?

Tetrabenazine works by affecting the levels of certain chemicals in the brain called dopamine, serotonin and norepinephrine (as a group, these chemicals are sometimes called ‘monoamines’). The exact way tetrabenazine improves the symptoms of Tourette syndrome is not fully known.

How Well Does Tetrabenazine Work in Children and Adolescents?

Tetrabenazine is approved by Health Canada for the treatment of Tourette syndrome. Current evidence supports the use of tetrabenazine for the treatment of Tourette syndrome in children and adolescents. It has been shown to reduce the number of motor and vocal tics, as well as the severity of symptoms.

In one study, children with various movement disorders (i.e. tics, chorea, dystonia) that did not respond to treatment with other medications were treated with tetrabenazine, with 77% of them showing some degree of improvement.

Tetrabenazine has also been used in combination with stimulant medications in the management of children and adolescents with attention deficit/hyperactivity disorder (AD/HD) and Tourette syndrome.

Whenever possible, adding behavioural therapy and counseling to tetrabenazine increases the chance for benefit.

How Should Tetrabenazine Be Taken?

Tetrabenazine is usually taken two to three times a day with or without food. 

This medication should be taken at the same time each day as directed by your doctor. Try to connect it with something you do each day (like eating breakfast or brushing your teeth) so that you don’t forget. 

Try to avoid alcohol while taking tetrabenazine.

Does it cause stomach discomfort? 

• If so, try taking it with food.

Usually, your doctor will start with a low dose that is best suited to your age and weight. This dose will then be slowly increased over several days or weeks based on how you respond to it. You and your doctor can then discuss the best dosage to stay on based on how this medication is tolerated (how well it is working and how you are doing with its side effects) and how well it helps decrease your symptoms.

When will Tetrabenazine Start Working?

Improvements may be seen in as little as 1 to 2 weeks. However, it can sometimes take up to 6 weeks to see the full benefits of the medication. Tetrabenazine may not work for everyone. If your symptoms have not improved within 6 weeks, your doctor may recommend switching you to a different medication.

How Long Do I Have to Take Tetrabenazine?

This depends on the symptoms you have, how frequently they occur, and how long you have had them. Most people need to take tetrabenazine for several months. Your doctor will discuss the benefits and risks of taking tetrabenazine with you. At this time you can also discuss how long you might need to take this medication.

Do not increase, decrease, or stop taking tetrabenazine without discussing it with your doctor. If you stop taking tetrabenazine suddenly, it is possible that your symptoms may return.

Is Tetrabenazine Addictive?

No, tetrabenazine is not addictive and you will not have “cravings” for this medication like you might with nicotine or street drugs. If you and your doctor decide it is best to stop using tetrabenazine, your doctor will explain how to safely come off this medication so you don’t feel negative effects as your body adjusts to being without it.

What Are the Side Effects, and What Can I Do If I Get Them?

As with most medications, side effects may occur when taking tetrabenazine. However, most side effects are mild and temporary. Sometimes the side effects may occur before any of the beneficial effects. It is also possible for some individuals to experience side effects that they feel are serious or long-lasting. If this occurs, speak to your doctor about ways to manage them at your next appointment.

Here are some of the more common side effects of taking this medication, along with ways to lessen these effects:

Potentially serious but uncommon side effects (e.g. those that occur in less than 5% of patients)

Contact your doctor IMMEDIATELY if you have any of these side effects:

• Abnormal menstrual cycle in females
• Breast tenderness or discharge
• Severe dizziness, fainting/passing out, or balance difficulties
• Fever, severe muscle stiffness, or difficulty moving
• Severe mood changes
• New twitching or uncontrolled tongue or jaw movements
• Restlessness or feeling that you constantly need to be moving
• Muscle spasms or cramps
• Thoughts of self harm, hostility or suicide

Are you having troubles with drowsiness, dizziness, or slowed down?

• If you experience these temporary side effects, avoid operating heavy machinery or driving a car.

What Things Should I Tell My Doctor About?

Tell your doctor or pharmacist if you:

• Have any changes in mood or thoughts of self harm.
• Have any allergies or have experienced a reaction to a medication.
• Are lactose intolerant (tetrabenazine tablets contain lactose)
• Are taking or plan to start taking any other prescription or non-prescription medications (including complementary, alternative or herbal medicines). Some medications can interact with tetrabenazine.

Your doctor may need to change the doses of your medications or monitor you carefully for side effects if you are taking medications that may interact with tetrabenazine.

• Have seizures, depression, liver disease or kidney disease, or a personal or family history of a heart condition.
• Miss a period, are pregnant (or are planning to become pregnant) or are breast-feeding.
• Are currently using alcohol or street drugs. These substances may interfere with how well tetrabenazine works for you and/or make you feel drowsy.

What Special Instructions Should I Follow While Using Tetrabenazine?

• Keep all appointments with your doctor and the laboratory. Your doctor may order certain assessments and tests to check how you are responding to tetrabenazine and monitor for side effects.
• Do not allow anyone else to use your medication.

What If I Forget to Take a Dose of Tetrabenazine?

Do you normally take tetrabenazine regularly but have forgotten a dosage?

• Take the missed dose as soon as you remember.
• If it is almost time for your next dose (e.g. within 4 hours)then
  • Skip the missed dose.
  • Return to your regular dosing schedule.
  • Do not double your next dose.

What Do I Store Tetrabenazine?

• Keep this medication in the original container, stored at room temperature away from moisture and heat (e.g. not in the bathroom or kitchen).
• Keep this medication out of reach and sight of children.

Share this Information

You may wish to share this information with your family members to help them to understand your treatment options. Since every person's needs are different, it is important that you follow the advice provided to you by your own doctor, nurse and/or pharmacist and speak to them if you have any questions about this medication.

About this Document

Special thanks to the Kelty Centre for Mental Health for permission to adapt this document. The original document was developed by health professionals of BC Mental Health and Addiction Services, and reviewed by the staff of the Kelty Mental Health Centre. French translation provided courtesy of the Ontario Centre of Excellence for Child and Youth Mental Health and the Children's Hospital of Eastern Ontario (CHEO).

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You are free to copy and distribute this material unchanged and in its entirety as long as 1) this material is not used in any way that suggests we endorse you or your use of the material, 2) this material is not used for commercial purposes (non-commercial), 3) this material is not altered in any way (no derivative works). View full license at http://creativecommons.org/licenses/by-nc-nd/2.5/ca/. For any other uses, please contact the original rights holder, the Kelty Mental Health Centre.

Disclaimer

Information in this pamphlet is offered ‘as is' and is meant only to provide general information that supplements, but does not replace the information from your health provider. Always contact a qualified health professional for further information in your specific situation or circumstance.