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chorea associated with Huntington’s disease

HD Chorea Symptoms

Recognizing chorea associated with HD is the first step towards seeking treatment. If you or a loved one is experiencing HD chorea, talk to your doctor today.

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Home | HD Chorea Symptoms

What is HD chorea?

Chorea (kor-EE-uh) is the most visible feature of Huntington’s disease (HD), a genetic disorder affecting the brain. Nine out of ten people with HD will develop chorea at some point as their illness progresses.1

Chorea associated with HD causes involuntary movements, or movements that are not made on purpose.2 People with HD chorea may not be aware of their uncontrolled movements.3 In some people, chorea may begin before they know they have Huntington’s disease. If their chorea is mild, they may be able to hide their involuntary movements with voluntary movements.2,3 However, when they are distracted, stressed, or anxious, their chorea tends to get worse and more noticeable.2

One of the most important things that families can do to help their loved ones with HD chorea is to help recognize it. Patients with HD chorea often have had it for a long time and adjust to it, and therefore tend to minimize their symptoms."
~ Victor Sung, MD, Associate Director of the
University of Alabama at Birmingham
Huntington's Disease Center of Excellence

HD chorea can appear as jerky, twisting, writhing or dance-like motions, and people may appear to be restless, fidgety, or clumsy.4,5 Early in the disease, the movements may involve only the hands and feet. However, everyone’s story is different. Eventually the face, neck, shoulders, trunk, and legs may be affected.2

HD chorea symptoms usually appear between ages 30 and 54, although 10% of symptoms can develop after age 60.2,6 It is important to note that one person’s HD chorea does not necessarily begin the same as someone else’s and some people may not even experience chorea associated with HD.1,3

The first sign of HD chorea I noticed in Mike was finger tapping."

~ Katie, caregiver of person living with HD
Rob’s HD chorea started with movement in his leg—a constant jiggling like someone does when they’re bouncing their leg to keep time with music."

~ Sami, caregiver of person living with HD
Dustin’s HD chorea started with slight trunk movements."

~ Molly, caregiver of person living with HD

Ask your doctor about a treatment that might help lessen HD chorea. It is helpful while asking your doctor about a treatment to describe the challenges you or your loved one may be facing because of HD chorea.

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.

Sources:

  1. Haddad MS, Cummings JL. Huntington’s disease. Psychiatr Clin North Am. 1997; 20:791-807.
  2. Nance M, Paulsen JS, Rosenblatt A, Wheelock V. A Physician’s Guide to the Management of Huntington’s Disease. 3rd ed. Huntington’s Disease Society of America. 2011.
  3. Sawle GV. Chorea. In: Sawle GV, ed. Movement Disorders in Clinical Practice. Oxford: Isis Medical Media; 1999:119-133.
  4. The motor symptoms of Huntington’s disease. HOPES, Huntington’s Outreach Project for Education, at Stanford. https://www.stanford.edu/group/hopes/cgi-bin/wordpress/2010/06/motor-symptoms. Accessed March 18, 2013.
  5. Marshall FJ. Clinical features and treatment of Huntington’s disease. In: Watts RL, Koller WC, eds. Movement Disorders: Neurologic Principles and Practice. 2nd ed. United States: McGraw-Hill; 2004:589-601.
  6. Walker FO. Huntington’s disease. Lancet 2007: 369; 218-228