The only FDA-approved treatment for
chorea associated with Huntington’s disease

Caregiver Resources and Videos

Helping a loved-one to manage Huntington's disease can be rewarding and challenging. These videos, tips, and community resources can help you get the support you need.

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Our Caring Conversations
program gives you the
opportunity to speak
one-on-one with a caregiver.

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See Real Stories

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

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Home | Caregiver Resources and Videos

Support for Caregivers

If your loved one is considering Xenazine® (tetrabenazine) to treat chorea associated with Huntington's disease (HD), the Caring Conversations program is an opportunity to have a one-on-one phone conversation with a caregiver. To register, call 1-866-756-0493 or download the brochure to learn more.

Huntington’s disease often affects the entire family, as well as the individual living with it. The more you know about how HD progresses, the better you can provide care and understanding. Discover tips from other caregivers to help you talk with your loved one’s doctor and make caregiving less overwhelming. You can find additional support in the HD community by visiting HD organization websites and educational events.

Be sure to watch real stories for videos that show how families cope with HD chorea.


Caring Conversations Program

If you're considering Xenazine, the Caring Conversations program connects you one-on-one over the phone with another caregiver to receive support and learn from their journey.

Learn About the Caring Conversations Program »


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 »


Misty’s HD Chorea Story

Misty shares her story of how chorea symptoms associated with Huntington’s disease have impacted her family. She points out that it takes just one person to recognize the disease.

Watch Misty’s Story »


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 »

[As a caregiver], the more you just go about your day and go about your life and just have a normal lifestyle, the better your life is. Taking time for yourself is a good way to take care of yourself because if you’re not happy and healthy, then your husband or your spouse — or whoever it may be that has Huntington’s — can’t be happy or healthy."
~ Molly, caregiver of person living with HD

Indications and Usage:

XENAZINE® (tetrabenazine) 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 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, breast-feeding or have breast cancer. Do not start any new medicines while taking XENAZINE without talking to your doctor first.
  • 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.
  • Side effects such as irregular heartbeat, NMS, and parkinsonism, may be increased when using XENAZINE with other drugs (e.g., dopamine antagonists).
  • 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.