Living with Huntington’s Disease Chorea

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(BPT) - Before experiencing any symptoms, James McGann decided to get tested for Huntington's Disease (HD) in his mid-50s. Since his mother had HD, he knew that he had a 50% chance of developing the disorder, and he wanted to tell his children if they too were at risk.[1] In 2008, McGann tested positive for HD.

Huntington’s disease (HD) is a neurological, hereditary disorder that affects nerve cells in the brain.[2] About two years after testing positive, James started experiencing one of the most visible symptoms of HD, known as chorea, which causes uncontrolled, involuntary movements or twitching of the muscles, including the limbs and face.[1],[2]

“I’ve heard that everyone experiences chorea differently. In my case, I first noticed twitching in my big toe,” said McGann.[3] “Later, I experienced chorea in my hands and feet.[1],[2] It made many activities difficult, including using the stairs.[1],[3] In fact, while McGann is able to avoid accidents at home, he had to retire early from his job in the concrete industry when his chorea started to affect his job.[1],[3]

His care partner and wife, Sue, said, “James has to concentrate when he has a glass of water in his hands or while washing dishes. He has to be careful that he doesn’t drop something.[1],[3] For me, it's important to be supportive. Some days are tough, but I know it’s even harder for him.”

Finding ways to give back to the HD community helps Sue cope with her husband’s disease. She spends her time volunteering at the Huntington’s Disease Society of America (HDSA) supporting patients and their care partners by providing them with resources and information on how to identify symptoms, including the uncontrollable movements of chorea, which is present in 90% of patients with adult-onset HD.[4]

“My mother had chorea and she had pretty significant uncontrolled movements.[1],[3] Back then, my family didn’t know what it was,” said McGann. “Now that I’m familiar with chorea, I can see someone from a distance and recognize that they have it because their movements look uncontrolled.”[1]

While there is no cure for HD, there are treatments that could help patients manage chorea.[3]

“When my chorea began several years ago, I started searching for clinical trials,” said James. “Then I read about an upcoming trial in Boston.”

His wife Sue was on board: “I definitely supported James participating in the clinical trial. I advocate for him a lot because I know he wants to be a part of research to help others living with HD, not just himself.”

The clinical trial McGann joined was exploring the efficacy and safety of an investigational treatment, deutetrabenazine, to control chorea associated with HD.[5],[6] After joining the trial, McGann noticed an improvement of his symptoms.[5],[6] “The changes after starting treatment were noticeable. My finger and toe movements and swaying weren’t as bad anymore,” said McGann. “I know everyone’s experience with deutetrabenazine tablets is different, but for me, I also noticed tiredness and some restlessness in my legs.”[5],[6]

AUSTEDO® (deutetrabenazine) tablets was approved by the U.S. Food and Drug Administration (FDA) in 2017 for the treatment of chorea associated with Huntington’s Disease in adults.[7]

Approved Uses

  • AUSTEDO® is a prescription medicine that is used to treat: the involuntary movements (chorea) of Huntington’s disease. AUSTEDO 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.
  • movements in the face, tongue, or other body parts that cannot be controlled (tardive dyskinesia).

It is not known if AUSTEDO is safe and effective in children.

Important Safety Information

AUSTEDO can cause serious side effects in people with Huntington’s Disease, including: depression, suicidal thoughts, or suicidal actions. Do not start taking AUSTEDO 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. This is especially important when AUSTEDO is started and when the dose is changed. Call your healthcare provider right away if you become depressed, have unusual changes in mood or behavior, or have thoughts of suicide.

Please see additional Important Safety Information below and full Prescribing Information, including Boxed Warning.

As a careful observer, Sue agreed there were noticeable changes in his chorea symptoms.[5],[6]

“I know treatment with AUSTEDO can be different for everyone. For James, I believe his uncontrolled movements have improved,” added Sue. “Throughout his treatment, I took video of the movements in his feet. Over time, we could see that the movements were less noticeable.”[5],[6]

“Once AUSTEDO was approved, my care team gradually adjusted my dosage. The updated dosage continued to manage my chorea symptoms. I still experience some tiredness, but the personalized dosing available with AUSTEDO helped my doctor find the right dose for me."[5],[6],[7]

“As a care partner, it’s important to get support,” said Sue. “Community groups like HDSA are good sources for resources and information on HD, and based on my experience, Teva’s Shared Solutions® program can also be helpful.”

Shared Solutions is a patient support program that offers options for financial assistance, nurse support, and benefits coverage throughout a patient’s treatment with AUSTEDO.[8]

Today, James still manages his chorea symptoms with AUSTEDO, and both James and Sue encourage others who are experiencing HD chorea to talk to their doctor to see if it may be an option for them.[5],[6]

IMPORTANT SAFETY INFORMATION (Continued)

Do not take AUSTEDO if you:

  • have Huntington’s disease and are depressed or have thoughts of suicide.
  • have liver problems.
  • are taking a monoamine oxidase inhibitor (MAOI) medicine. Do not take an MAOI within 14 days after you stop taking AUSTEDO. Do not start AUSTEDO® if you stopped taking an MAOI in the last 14 days. Ask your healthcare provider or pharmacist if you are not sure.
  • are taking reserpine. Do not take medicines that contain reserpine (such as Serpalan® and Renese®-R) with AUSTEDO. If your healthcare provider plans to switch you from taking reserpine to AUSTEDO, you must wait at least 20 days after your last dose of reserpine before you start taking AUSTEDO.
  • are taking tetrabenazine (Xenazine®). If your healthcare provider plans to switch you from tetrabenazine (Xenazine®) to AUSTEDO, take your first dose of AUSTEDO on the day after your last dose of tetrabenazine (Xenazine®).
  • are taking valbenazine (Ingrezza®).

Other possible serious side effects include:

  • Irregular heartbeat (QT prolongation). AUSTEDO increases your chance of having certain changes in the electrical activity in your heart. These changes can lead to a dangerous abnormal heartbeat. Taking AUSTEDO with certain medicines may increase this chance.
  • Neuroleptic Malignant Syndrome. Call your healthcare provider 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.
  • Restlessness. You may get a condition where you feel a strong urge to move. This is called akathisia.
  • Parkinsonism. Symptoms include: slight shaking, body stiffness, trouble moving, trouble keeping your balance, or falls.

Sleepiness (sedation) is a common side effect of AUSTEDO. While taking AUSTEDO, do not drive a car or operate dangerous machinery until you know how AUSTEDO affects you. Drinking alcohol and taking other drugs that may also cause sleepiness while you are taking AUSTEDO may increase any sleepiness caused by AUSTEDO.

The most common side effects of AUSTEDO in people with Huntington’s disease include sleepiness (sedation), diarrhea, tiredness, and dry mouth.

The most common side effects of AUSTEDO in people with tardive dyskinesia include inflammation of the nose and throat (nasopharyngitis) and problems sleeping (insomnia).

These are not all the possible side effects of AUSTEDO. Call your doctor for medical advice about side effects. You are encouraged to report side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch or call 1-800-FDA-1088.

Please read the accompanying Medication Guide.

Please see full Prescribing Information, including Boxed Warning.

Visit AUSTEDO.com and HDSA.org to learn more about Huntington's Disease and chorea.

Visit AUSTEDO.com/huntingtons-chorea/support for more on Teva’s Shared Solutions®.

© 2021 Teva Neuroscience, Inc.


[1] Huntington’s Disease Society of America. What is HD/Overview of Huntington’s Disease. HDSA website. Accessed September 2021. https://hdsa.org/what-is-hd/overview-of-huntingtons-disease/.

[2] Huntington’s Disease Society of America. Physical and Occupational Therapy: Family Guide Series.2010. Accessed September 2021. http://hdsa.org/wp-content/uploads/2015/03/PhysicalOccupationalTherapy_FamilyGuide.pdf.

[3] N Martha, Paulsen J, Rosenblatt A, et al. A Physician’s Guide to the Management of Huntington’s Disease. 3rd ed. Huntington’s Disease Society of America; 2011

http://hdsa.org/wp-content/uploads/2015/03/PhysiciansGuide_3rd-Edition.pdf. Accessed September 2021.

[4] Thorley EM, Iyer RG, Wicks P, et al. Understanding How Chorea Affects Health-Related Quality of Life in Huntington Disease: An Online Survey of Patients and Caregivers in the United States. The Patient. 2018 May 11; 547–559.

[5] Huntington Study Group. Effect of Deutetrabenazine on Chorea Among Patients With Huntington Disease

A Randomized Clinical Trial. JAMA. 2016 July 5;316(1):40-50.

[6] Data on file. Teva Neuroscience Inc.

[7] AUSTEDO® (deutetrabenazine) tablets current Prescribing Information. Parsippany, NJ. Teva Neuroscience.

[8] Teva Neuroscience, Inc. For HD Chorea in Adults. AUSTEDO website. Accessed September 2021. https://www.austedo.com/huntingtons-chorea/support.

AUS-43948
October 2021