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Huntington’s Disease (HD) chorea emailed to you
HUNTINGTON’S DISEASE
CHOREA VIDEOS
Hear what people with Huntington’s disease (HD) chorea and their care partners
have to say about HD chorea and their experiences with AUSTEDO® (deutetrabenazine) tablets.
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The importance of treating HD chorea early
As a care partner to her husband with HD, hear Rhonda speak about Ray’s involuntary movements and the importance of being proactive about seeking treatment. View their full story or select a specific milestone from the chapters in the dropdown menu.
View transcript
Recognizing the Signs
Recognizing the Signs
Providing Care
Planning Ahead
The importance of treating
HD chorea early
See why Ray and Rhonda made the decision to treat HD chorea
View transcript
In bed, he would be kicking me or hitting, and then it just moved on to while he was sleeping, he was just flailing around, moving his arms and legs.
So, what motivated us to talk to the doctor about the movements was, ultimately, when he dislocated his shoulder. I just kind of felt like something needed to change. We didn't know if there was anything that could be done, but we knew that we needed to figure that out.
If I knew of somebody that had HD chorea, I would just talk to them about not waiting like we did. Reading as much as they can, talking to people, searching people out. I would ask them to really advocate for themselves. Especially with the chorea, because that is something you can't hide and it affects all of your activities. It makes just living very difficult.
So, I go to all the doctor's appointments with Ray so that I can help advocate for him. Sometimes, he doesn't realize various symptoms or feel the need to get them managed. So, for the chorea, I feel like sometimes the person actually with HD does not realize that they have the chorea, especially in the beginning.
By the time we went to the doctor for his chorea, I feel like we were a little bit beyond frustrated and stressed about them. And so I feel like we went, and I was advocating big time on anything that could help. We went much later than we should have.
We should have talked to her much sooner about the chorea before it got out of control like it did. And so, I would ask somebody else to advocate much better for their loved one early on.
So, as the movements progressed more and more, I was thinking about planning in my head what steps we would need to take, basically just to keep him safe and the rest of our house safe, and different equipment he might need.
What equipment he would need for, say, getting dressed or taking a shower. Or if he would need a wheelchair, getting a wheelchair ramp made, getting a deck put on the back so that he could still go outside once he was in a wheelchair.
Just things that I was planning in my head and I still think about on a daily basis... just trying to keep one step ahead of what he might need.
The advice I would give somebody that is a caregiver to somebody that has HD and chorea would be to make sure and get some time for yourself. Take care of yourself, however that looks for you, but make sure you do that sooner, early on, because it can be a lot.
AUSTEDO XR is a prescription medicine used to treat chorea associated with Huntington's disease in adults.
AUSTEDO XR can cause depression, suicidal thoughts, or actions in patients with Huntington's disease. Pay close attention to and call your doctor if you become depressed, have sudden changes in mood, or have suicidal thoughts. Don't take if you have liver problems, are taking reserpine, tetrabenazine, or valbenazine. AUSTEDO XR may cause irregular or fast heartbeat, or abnormal movements. Seek help for fever, stiff muscles, problems thinking, or sweating. Common side effects include inflammation of the nose and throat, insomnia and sleepiness.
Ray
I'm Ray. I’m 55.
Rhonda
My name is Rhonda, and I am Ray's wife.
Rhonda
Ray's dad had Huntington's disease. He wasn’t, wasn't able to walk. He ended up in a wheelchair. So that was kind of a really scary thought for me. I just assumed that our lives would be over very soon as we knew it.
Rhonda
So the first symptoms I noticed of his chorea was at night while he was sleeping, his arms would, you know, kind of start flailing and hitting and kind of it would just be like his whole body.
Ray
When I was driving to work one day, my hands started just shaking like this. It’s just weird you know, having your hands move and no, no explanation.
Rhonda
At that time. It was I was feeling a little bit desperate, like something needs to change. We can't do this anymore.
Rhonda
We made an appointment with the neurologist that week talking to her about how bad it had gotten, and she said, well, I have this drug that I would like for you to try.
Rhonda
Yeah, so his movements just became less and less as the doses increased. His sleeping now is very different. No more kicks, no more punches, no more flailing around in bed. We both noticed that small things that he would do with his hands became easier.
Ray
Yeah.
Rhonda
Buttoning his shirt, putting the leash on the dog's collar, tying his shoes. Those things became easier. So, yeah, it has far exceeded our expectations.
Rhonda
We're looking forward to taking a trip to Yellowstone. Hopefully taking our grandkids and doing some hiking. I don't know that we would have been able to continue hiking with his chorea had it continued on without the medication. I feel like that we're actually like living the way we've always wanted to live now. By going on vacations and being outdoors a lot more and having grandkids and yeah, I can't imagine life if he didn't have the medication.
Ray
It's really a deal maker for me. It just helps so much.
APPROVED USES
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.
IMPORTANT SAFETY INFORMATION
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.
Individual results may vary.
Please see the Important Safety Information at the end of this video.
Perspectives from people living with HD chorea
See why Ray and Rhonda made the decision to treat HD chorea
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References:
1. AUSTEDO® XR (deutetrabenazine) extended-release tablets/AUSTED0® tablets current Prescribing Information. Parsippany, NJ: Teva Neuroscience, Inc.
2. Waln 0, Jankovic J. An update on tardive dyskinesia: from phenomenology to treatment. Tremor Other Hyperkinet Mov (N Y). 2013:3:tre-03-161-4138-1.
3. Warikoo N, Schwartz TL, Citrome L. Tardive dyskinesia. In: Schwartz TL, Megna J, Topel ME, eds. Antipsychotic Drugs: Pharmacology, Side Effects and Abuse Prevention. Nova Science Publishers, Inc.; 2013:235-258.