Huntington’s disease chorea doctor discussion guide

If you are experiencing involuntary movements, it may be Huntington’s disease (HD) chorea¹

The first step in managing HD chorea is talking to your doctor. Bring this guide to your next appointment, whether it’s in person or through
telemedicine, to help your doctor determine if you have chorea related to HD and how it should be managed.

Answer the following questions and download your answers to bring to your next appointment. Answering all questions is required.

Question 1 of :

Which of the following involuntary movements are you experiencing?^2,3

Select all that apply.

Flicking the fingers

Flailing arms and/or legs

Shrugging the shoulders

Grimacing

Jerking and/or twisting

Irregular eye movements or blinking

How often do you experience these involuntary movements?³

Please select one:

Multiple times per minute

Multiple times per hour

Multiple times per day

Other

Do you have trouble
with any of these daily activities?³

Select all that apply.

Getting dressed

Drinking beverages

Brushing your teeth

Bathing

Speaking clearly

Swallowing and/or eating

Other

None

Does someone
assist you with
everyday tasks?³

Please select one:

Yes

No

Has a loved one or
care partner noticed
your unintentional movements?^1,4

Please select one:

Yes

No

Your guide is Complete!

Don’t forget to print or email your guide and take it to your next appointment.

Having an informed conversation with your healthcare provider is an important step if you're experiencing symptoms of HD chorea. Download or email your answers below and bring them with you to your next appointment to help make discussing your symptoms and experiences easier.

Your responses:

Email

AUSTEDO^® XR (deutetrabenazine) extended-release tablets and AUSTEDO^® (deutetrabenazine) tablets are prescription medicines that are used to treat:

the involuntary movements (chorea) of Huntington’s disease. AUSTEDO XR and AUSTEDO do 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 XR and AUSTEDO are safe and effective in children.

AUSTEDO XR and AUSTEDO can cause serious side effects in people with Huntington’s disease, including: depression, suicidal thoughts, or suicidal actions. Do not start taking AUSTEDO XR or 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 XR or 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.

Do not take AUSTEDO XR or AUSTEDO if you:

have Huntington’s disease and are depressed or have thoughts of suicide.
have liver problems.
are taking reserpine. Do not take medicines that contain reserpine with AUSTEDO XR or AUSTEDO. If your healthcare provider plans to switch you from taking reserpine to AUSTEDO XR or AUSTEDO, you must wait at least 20 days after your last dose of reserpine before you start taking AUSTEDO XR or AUSTEDO.
are taking a monoamine oxidase inhibitor (MAOI) medicine. Do not take an MAOI within 14 days after you stop taking AUSTEDO XR or AUSTEDO. Do not start AUSTEDO XR or 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 tetrabenazine. If your healthcare provider plans to switch you from tetrabenazine to AUSTEDO XR or AUSTEDO, take your first dose of AUSTEDO XR or AUSTEDO on the day after your last dose of tetrabenazine.
are taking valbenazine.

Other possible serious side effects include:

Irregular heartbeat (QT prolongation). AUSTEDO XR and 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 XR or 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 XR and AUSTEDO. While taking AUSTEDO XR or AUSTEDO, do not drive a car or operate dangerous machinery until you know how AUSTEDO XR or AUSTEDO affects you. Drinking alcohol and taking other drugs that may also cause sleepiness while you are taking AUSTEDO XR or AUSTEDO may increase any sleepiness caused by AUSTEDO XR and 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).

The most common side effects of AUSTEDO XR are expected to be similar to AUSTEDO in people with Huntington’s disease or tardive dyskinesia.

These are not all the possible side effects of AUSTEDO XR or 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.

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References:

1. National Institute of Neurological Disorders and Stroke. Huntington's Disease: Hope through Research. National Institutes of Health; 2020. NIH publication 20-NS-19. Accessed February 28, 2023. https://catalog.ninds.nih.gov/sites/default/files/publications/huntington%E2%80%99s-disease-hope-through-research_0.pdf

2. Tarapata K, Murray CF. A Caregiver's Guide to Huntington's Disease. Huntington's Disease Society of America; 2011. Accessed February 27, 2023. https://hdsa.org/wp-content/uploads/2015/03/A-Caregivers-Guide-to-HD.pdf

3. Burgess JC, Davis B, Fogarty E, et al. Caregiver Guide for Mid to Late Stage Huntington's Disease: For Long-Term Care Facilities and In-Home Care Agencies. Huntington's Disease Society of America; 2014. Accessed February 27, 2023. http://hdsa.org/wp-content/uploads/2015/04/CaregiverGuide_Mid_Late_StageHD.pdf

4. Warby SC, Graham RK, Hayden MR. Huntington disease: Synonym: Huntington chorea. In: Adam MP, Ardinger HH, Pagon RA, Wallace SE, eds. GeneReviews. University of Washington, Seattle; 1993-2018.