Amy & Kim’s Journey Through TD Diagnosis and Treatment
Amy and Kim were compensated by Neurocrine Biosciences, Inc. to share their story.
Taking certain mental health medicines (antipsychotics) for a while can cause abnormal dopamine signaling in the brain, which can lead to uncontrollable body movements called tardive dyskinesia (TD). Amy and her partner Kim talk about Amy’s journey to a TD diagnosis and what life has been like since she started treatment.
My TD movements had a big impact on my life. It was embarrassing, and I did not feel like I could relax and enjoy the things I wanted to do. Now that my movements have reduced, I feel less self-conscious. When Kim and I go out with friends and family, I’m less preoccupied with my movements.
Things were very different for us a few years ago. Amy has struggled with depression for many years and has been on various medications, including antipsychotics. In 2019, she was in an outpatient treatment program and taking various mental health medications and I noticed that she started having random movements. Her mouth and feet would suddenly start moving. She’d grimace, swing her jaw, and roll her tongue. I asked her why she was doing it and she didn’t know. She couldn’t stop these involuntary movements, and neither of us understood why they were happening. My dad had a movement disorder and I was worried that she might have the same condition.
Kim probably noticed the movements before I did. A staff psychiatrist in the partial hospitalization program I was part of told me that the movements were probably related to my medications but didn’t offer any further information on tardive dyskinesia (TD) or what steps I could take. My initial reaction was to get off the medication that was causing the movements. I assumed that stopping the medication would also cause the movements to stop. With my psychiatrist’s help I got off the medication, but the movements persisted. At the time, I wasn’t told that TD can be a lifelong condition and that movements can persist even after a patient stops taking medication.
Amy has always been an ambitious, athletic, outgoing person, and seeing her shut down and become withdrawn because she was self-conscious about the movements—in addition to already dealing with depression—was very hard for both of us. Although she was on a treatment plan, Amy was unable to work at this time due to her depression. This combined with the unexplained movements made it a very stressful time.
After months of being off the medication we believed was causing the movements, the movements lessened but had not completely disappeared. We still didn’t have answers. One day, Kim and I were watching TV when we happened to see a commercial for a TD treatment. We call this our “Aha!” moment. It was the first time we saw facial movements like mine, and it felt like we were finally being pointed in the right direction. Learning that the symptoms that I had been experiencing had a name was very relieving.
By this point, it had been over a year since Amy began to experience the movements. We were frustrated by how slow the diagnosis process was, but so grateful to at last be making progress on our way to diagnosis and treatment.
My regular psychiatrist then referred me to a neurologist, and due to COVID restrictions, I had a telehealth appointment with him. After observing my movements, he diagnosed me with TD. We talked about my treatment options and he prescribed once-daily INGREZZA® (valbenazine) capsules.
INGREZZA® (valbenazine) capsules is a prescription medicine used to treat adults with movements in the face, tongue, or other body parts that cannot be controlled (tardive dyskinesia). My neurologist told me that the most common side effect is sleepiness.
Please see Important Safety Information below
We were so excited for Amy to start INGREZZA. We were very encouraged to learn that INGREZZA treats TD while allowing patients to stay on most mental health meds, and it gave us confidence that it has been proven to reduce TD movements.
We learned that, in a clinical study, many people taking INGREZZA 80 mg started to see improvements in as little as 2 weeks,* and 7 in 10 people had reduced movements at 6 weeks.† I noticed Amy’s movements becoming less pronounced around 2–3 weeks, particularly in her mouth and feet. In some ways, I was aware of the changes before Amy was, and they were so gratifying to see.
While the movements aren’t completely gone, they’ve significantly lessened. I feel much more confident now. I can speak in front of people again without worrying the whole time about my jaw movements. This is just my experience; others may have a different experience with INGREZZA.
Before INGREZZA improved her TD, Amy was self-conscious about how her movements made her appear to others, and, as a result, we spent less time with our family and friends. Now that her movements have reduced, we’re back to traveling and being social again. INGREZZA has made a difference.
Learn more about INGREZZA—the simple, once-daily treatment proven to reduce TD that’s #1 prescribed.
INGREZZA® (valbenazine) capsules is a prescription medicine used to treat adults with movements in the face, tongue, or other body parts that cannot be controlled (tardive dyskinesia).
It is not known if INGREZZA is safe and effective in children.
IMPORTANT SAFETY INFORMATION
Do not take INGREZZA if you:
- are allergic to valbenazine, or any of the ingredients in INGREZZA.
INGREZZA may cause serious side effects, including:
- Sleepiness (somnolence). Do not drive, operate heavy machinery, or do other dangerous activities until you know how INGREZZA affects you.
- Heart rhythm problems (QT prolongation). INGREZZA may cause a heart problem known as QT prolongation.
Symptoms of QT prolongation may include:
Tell your healthcare provider right away if you have a change in your heartbeat (a fast or irregular heartbeat), or if you faint.
- Abnormal movements (Parkinson-like). Symptoms include: shaking, body stiffness, trouble moving or walking, or keeping your balance.
Before taking INGREZZA, tell your healthcare provider about all of your medical conditions including if you: have liver or heart problems, are pregnant or plan to become pregnant, or are breastfeeding or plan to breastfeed.
Tell your healthcare provider about all the medicines you take, including prescription and over-the-counter medicines, vitamins, and herbal supplements.
The most common side effect of INGREZZA is sleepiness (somnolence). Other side effects include changes in balance (balance problems, dizziness) or an increased risk of falls, headache, feelings of restlessness, dry mouth, constipation, and blurred vision.
These are not all of the possible side effects of INGREZZA. Call your doctor for medical advice about side effects. You are encouraged to report negative side effects of prescription drugs to the FDA. Visit MedWatch at www.fda.gov/medwatch or call 1-800-FDA-1088.
Please see accompanying INGREZZA full Product Information
The following promotional article is sponsored and developed by Neurocrine Biosciences, Inc.