Talking with Your Doctor About Xenazine® (tetrabenazine)
Keep an open dialogue
Individual results may vary. Xenazine may not be effective in reducing choreic movements in all HD patients. Please review the Important Safety Information, including Boxed Warning about the increased risk of depression and suicidality, below.
Even after you’ve been prescribed Xenazine, it’s important that you keep an open dialogue with your doctor and your whole healthcare team.
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!
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:
- Physical therapist
- Occupational therapist
- Nutritionist or dietician
- 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.