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Home | Already Prescribed | Talking With Your Doctor

Talking with Your Doctor About Xenazine® (tetrabenazine)

Keep an open dialogue

Even after you’ve been prescribed Xenazine, it’s important that you keep an open dialogue with your doctor and your whole healthcare team.

Be sure to discuss with your doctor any concerns you have about side effects, finding the right dose or getting your Xenazine prescription.

Tell your doctor if you have any side effects. 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.

Here are some tips for working well with your doctor.

Be a team

You and your caregiver are a team. Remember to approach doctor visits as a team. Write down questions or changes in symptoms ahead of time and bring them to your next visit. Share experiences and take the time to listen carefully. Two heads are better than one!

Be your own advocate and do your own research. Bring your list of questions to your doctor and your list of symptoms, and go over those with your doctor. And be a good advocate for what you need and what your care should be.”
~ Molly, caregiver of person living with HD

Use digital for your convenience

Use the gadgets at your disposal to keep your healthcare team up-to-date on your symptoms. Ask your healthcare team if it would be okay to email when something unexpected occurs. A quick email when something happens can serve as a reminder the next time you visit the doctor’s office.

And if your mobile device (cell phone or tablet, etc.) has the ability to take notes, keep a running list of your questions or concerns so you’ll be sure to have it with you when you visit.

Even if you’ve already been prescribed Xenazine, you might find it helpful to review these questions to ask your doctor.

Develop an HD chorea treatment team

In addition to your primary care doctor and/or neurologist, there are many specialists and healthcare workers who may be able to assist you in your treatment of HD chorea. Ask your physician for recommendations and consider adding these professionals to your personal care team:

  • Psychiatrist
  • Physical therapist
  • Occupational therapist
  • Nutritionist or dietician
  • Psychologist
  • Social worker
  • Home health aide

Remember to talk to family members, friends and members of the HD community. You’ll find that many are more than willing to help if you just ask.

Caregivers can find additional support including links to HD community organizations and tips for caregivers throughout this website.

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.