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Huntington's Disease Chorea: Managing Day by Day

Taking care of a family member or friend living with Huntington’s disease (HD) can be physically and emotionally challenging. You may feel isolated, alone and overwhelmed.

Make sure you remember you’re talking to your spouse or your loved one and not a child. And don’t talk in demeaning levels because you lose all your rapport with them and you lose all respect. Then, your day gets harder and harder because the behavior gets worse and worse.”
~ Molly, caregiver of person living with HD

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 »


Caregivers Discuss Considering HD Chorea Treatment

Considering treatment for chorea associated with Huntington’s disease? Hear from caregivers about considering HD chorea treatment

Listen to the caregivers »

In addition to talking with your doctor and relying on the experience and support of the HD community, you must also help your loved one with the daily challenges he or she will face.

Here are some additional suggestions that might help.

Break down tasks into steps. Making everyday activities more manageable can help your loved one maintain some independence. But be ready to assist when needed.2

Learn how to communicate in a new way with your loved one. Speak clearly and in short sentences. Give your loved one time to think and respond.2

A physical therapist can teach you appropriate and safe exercises that enhance strength, flexibility, balance and coordination. These excercises can help maintain mobility as long as possible and may reduce the risk of falls.3

Maintain proper nutrition. Patients with Huntington’s disease can burn extra calories due to the movements of chorea, so it is important that they get adequate nutrition to maintain body weight.3 Ask your doctor or nutritionist if extra vitamins or supplements might be necessary.

Select foods that are easier to eat in order to minimize difficulty with chewing and swallowing. Utensils designed for people with limited fine motor skills and covered cups with straws or drinking spouts can also help.3

Lessen the risk of falls and injury due to balance problems. Remove area rugs, install grab bars in bathrooms, and clear rooms of sharp or breakable objects.2

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.
  2. Caring for Adults with Cognitive and Memory Impairments. Family Caregiver Alliance website. http://www.caregiver.org/caregiver/jsp/content_node.jsp?nodeid=392. Accessed on March 18, 2013.
  3. Huntington’s Disease. Mayo Clinic website. http://www.mayoclinic.com/health/huntingtons-disease/DS00401. Accessed on March 18, 2013.