Already Prescribed Xenazine® (tetrabenazine)

If you or a loved one is currently taking Xenazine, you may have additional questions about your medication. These pages are here to help.

What to Expect From Xenazine

Learn about possible side effects and how to work with your doctor to find the right dose for you.

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Start a Conversation

Get tips on how to discuss your condition or your loved one's condition with your doctor.

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View true stories and see how Xenazine may make a difference with HD chorea symptoms.

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Adjusting your Xenazine dose

When you start taking Xenazine, your doctor will regularly increase the number or strength of your tablets to find the right dose that reduces chorea associated with Huntington's disease (HD). This process, known as titration (tie-TRAY-shun), is a very important part of your treatment plan. If your doctor thinks you need to take more than 50 mg of Xenazine each day, you will need to have a blood test to see if a higher dose is right for you.


Sue and Jeff’s Story

Sue and Jeff share their experiences living with Huntington’s disease, from their initial reactions to her diagnosis to working with their doctor to find treatment for her HD chorea symptoms.

Hear from Sue and Jeff »


Harry and Delraye's Journey with HD

Watch Harry and Delraye discuss their journey with Huntington’s disease, from their experiences with chorea symptoms to interactions with their healthcare team.

Join Harry & Delraye’s Journey »

Follow the dosing schedule provided by your doctor to help you keep track of when and how much Xenazine to take. The right dose of Xenazine may be different for every person.

Be sure to contact your doctor if you are experiencing any side effects or if Xenazine is not working.

Do not stop taking Xenazine without talking to your doctor first. Call your doctor for medical advice about side effects. You may report side effects to the Food and Drug Administration (FDA) at 1-800-FDA-1088.

Getting and paying for Xenazine

If you and your doctor decide that Xenazine is right for you, your doctor will fax a prescription form to the Xenazine Information Center (XIC). Your Xenazine prescription will be coordinated through the XIC and will be mailed to you by a specialty pharmacy. It is important to always return calls from the XIC and specialty pharmacies. Specialty pharmacies can only deliver refills if they can reach you. Find out more about getting your prescription.

If you have concerns about paying for your medication, please learn about financial help that may be available for you. Here you will find information about the REACH program and how the Xenazine Information Center can assist you.

While we know that Xenazine doesn’t work for everyone, Gary saw an improvement in his symptoms. There was less facial grimacing, less shoulder shrugging and less fidgeting."
~ Barbara, caregiver of person living with HD

Talking with your doctor and getting support

Continue to follow up with your doctor even after you’ve been prescribed treatment. We have some tips for talking with your doctor and creating a good treatment plan for you and your caregiver.

If you are a caregiver, we also provide information to help you get the support you need to help you care for your loved one day to day.

XENAZINE® (tetrabenazine) Tablets

Indications and Usage:

XENAZINE is a medicine that is used to treat the involuntary movements (chorea) of Huntington's disease. XENAZINE does not cure the cause of the involuntary movements, and it does not treat other symptoms of Huntington's disease, such as problems with thinking or emotions.

It is not known whether XENAZINE is safe and effective in children.

Important Safety Information:

  • XENAZINE can cause serious side effects, including:
    • depression
    • suicidal thoughts
    • suicidal actions
  • You should not start taking XENAZINE if you are depressed (have untreated depression or depression that is not well controlled by medicine) or have suicidal thoughts.
  • Pay close attention to any changes, especially sudden changes, in mood, behaviors, thoughts or feelings, or worsening depression. This is especially important when XENAZINE is started and when the dose is changed.
  • Do not take XENAZINE if you have liver problems or are taking monoamine oxidase inhibitors (MAOIs) or reserpine. Ask your doctor or pharmacist if you are not sure. At least 20 days should pass after stopping reserpine before starting XENAZINE.
  • Tell your doctor if you are pregnant or plan to become pregnant, breast-feeding, have breast cancer or a history of breast cancer, or have heart disease or an irregular heartbeat.
  • Tell your doctor about all the medicines you take. Do not start any new medicines while taking XENAZINE without talking to your doctor first.
  • Take XENAZINE exactly as prescribed by your doctor. The need for therapy should be evaluated on an ongoing basis with your doctor. The dose of XENAZINE should be adjusted slowly over several weeks for a dose that is appropriate for you. Tell your doctor if you stop taking XENAZINE for more than 5 days. Do not take another dose until you talk to your doctor. If your doctor thinks you need to take more than 50 mg of XENAZINE each day, you will need to have a blood test to see if a higher dose is right for you.
  • Neuroleptic Malignant Syndrome (NMS) is a potentially fatal side effect reported with XENAZINE. Call your doctor right away and go to the nearest emergency room if you develop these signs and symptoms that do not have another obvious cause: high fever, stiff muscles, problems thinking, very fast or uneven heartbeat, or increased sweating. XENAZINE should be stopped immediately if NMS is diagnosed.
  • XENAZINE can also cause other serious side effects, including: parkinsonism (slight shaking, body stiffness, trouble moving, or keeping your balance), restlessness (akathisia), trouble swallowing, irregular heartbeat, and dizziness due to blood pressure changes when you change position (orthostatic hypotension). Trouble swallowing may increase the risk of pneumonia. Uncontrolled movements called tardive dyskinesia (TD) may also develop in patients treated with XENAZINE. It is possible that the TD will not go away.
  • The risk of side effects, such as irregular heartbeat, parkinsonism, NMS, and restlessness (akathisia), may be increased when using XENAZINE with other drugs (e.g., dopamine antagonists or antipsychotics).
  • Sleepiness is a common side effect of XENAZINE; do not drive a car or operate dangerous machinery until you know how XENAZINE affects you. Alcohol and other drugs may increase sleepiness caused by XENAZINE.
  • Some side effects, such as depression, tiredness, trouble sleeping, sleepiness, parkinsonism, agitation, and restlessness (akathisia), may be dose-dependent. If the side effects don’t stop or lessen, your doctor should consider lowering the dose or stopping your XENAZINE. The most commonly reported side effects in studies with XENAZINE were sleepiness, trouble sleeping, depression, tiredness, anxiety, restlessness, agitation, and nausea.

For more information, please see the full Prescribing Information, including Boxed Warning, the Medication Guide or go to www.XenazineUSA.com.

You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch, or call 1-800-FDA-1088.

Sources:

  1. "FDA Approves First Drug for Treatment of Chorea in Huntington's Disease", FDA News Release, August 15, 2008: http://www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/2008/ucm116936.htm. Updated April 15, 2013. Accessed August 17, 2015.