Spotting Signs of Disease Progression at Holiday Gatherings


Posted: December 15, 2021 | Word Count: 1,537

Sponsored and Developed by Neurocrine Biosciences

The holidays are a whirlwind of joyful chaos – traveling, cooking, gratitude, and time with those we love. For families and friends of those living with chronic and progressive diseases such as Parkinson’s disease (PD), the holidays may come with some additional considerations and challenges. At the same time, they provide opportunities for assistance and support from the extended family visiting this time of year.

Because immediate family likely spends a lot of time with the person in their life who has PD, it’s easy to get into a routine where they might not notice that their loved one’s symptoms have progressed or advanced. The chance to spend time with extended family and friends over the holidays offers an opportunity to get their feedback on changes in symptoms that they might notice. A sibling or niece who sees the person living with PD only a few times a year may pick up on some physical or cognitive signs that are harder to spot for those who are with the person every day.

Spotting (And Understanding) Parkinson’s Disease Symptoms

Symptoms of PD can become more noticeable during periods of time when the medications start to wear off between doses. This is called “OFF” time.1,2

There are several symptoms of PD; an increase or worsening of these could be a sign that the person is experiencing disease progression, and/or more frequent “OFF” time. These may include:

  • Motor Symptoms – characterized by abnormal movement or difficulty of movement, including:4
    • Akinesia or bradykinesia – Slowness and/or reduction in speed of movement, hesitations, or halts during movement
    • Tremors – Shaking in arms or legs while the limb is at rest, which may not be present when the person is moving
    • Rigidity – increase in muscle stiffness
    • Postural instability – Stooped posture, difficulties with walking, and balance. This is usually an effect of the other motor symptoms of PD
  • Non-Motor Symptoms – those symptoms not related to movement, including:5
    • Fatigue/sleep disorders
    • Memory problems
    • Anxiety/depression
    • Pain
    • Weight changes (usually weight loss)

These are not all the symptoms of PD progression and/or “OFF” time, but they may be the ones family members are likely to notice during holiday visits. So, if you do see your loved one with PD struggling with these symptoms, what can you do?

Understanding “OFF” time

  • Parkinson’s disease is thought to be caused by low or falling levels of dopamine, a chemical that helps send messages to the part of the brain that controls movement and coordination.2,3
  • Most people with PD are on a combination of two medications, called levodopa/carbidopa. These medications help make more dopamine available in the brain.1,2
  • Usually, people on levodopa/carbidopa need to take pills multiple times per day to keep the dopamine levels in their brains steady. When the medication starts to wear off between doses, symptoms of PD can reappear.1,2
  • These periods of time throughout the day when symptoms come back are referred to as “OFF” time.1,2

Discussing Parkinson’s Disease Treatment Options

A good first step is for you and your extended family to talk with the loved one with PD and discuss their symptoms, how they’ve been feeling, and what you’ve noticed. Based on what you learn, you can suggest that it may be time to speak with their doctor about treatment options that could help reduce “OFF” time, giving your loved one more symptom-free time throughout the day.

For people with PD already taking levodopa/carbidopa, it may be time to explore an adjunctive (add-on, or additional) treatment option – like COMT inhibitors – to enhance levodopa. COMT inhibitors help to block an enzyme in the body called COMT that breaks down levodopa before it can reach the brain to help raise dopamine levels.2,6

One such COMT inhibitor, called ONGENTYS (opicapone), may be an option for your loved one with PD. ONGENTYS capsules is a prescription medicine used with levodopa and carbidopa in adults with Parkinson’s disease who are having “OFF” episodes.7

By blocking the COMT enzyme from breaking down levodopa, ONGENTYS allows for more of the levodopa to be available to reach the brain. ONGENTYS is a once daily capsule that doesn't need to be dose adjusted.7 In the ONGENTYS clinical studies, people started to see a reduction in OFF time as early as 1 week and ONGENTYS significantly reduced OFF time by about 2 hours on average vs. about 1 hour for people taking levodopa/carbidopa without ONGENTYS within 14 to 15 weeks.7,8,9

The holidays can be an excellent opportunity to reflect on how you can best help the person with PD in your life. During holiday season gatherings, if you or your family and friends happen to notice that your loved one with PD is struggling with symptoms, it may be time to talk about additional treatment options, such as ONGENTYS.

For more information on ONGENTYS please visit: ongentys.com.

IMPORTANT INFORMATION

Approved Use:

ONGENTYS® (opicapone) capsules is a prescription medicine used with levodopa and carbidopa in people with Parkinson’s disease (PD) who are having “OFF” episodes.

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

IMPORTANT SAFETY INFORMATION

Do not take ONGENTYS if you:

  • take a type of medicine called a non-selective monoamine-oxidase (MAO) inhibitor.
  • have a tumor that secretes hormones known as catecholamines.

Before taking ONGENTYS, tell your healthcare provider about all of your medical conditions, including if you:

  • have daytime sleepiness from a sleep disorder, have unexpected periods of sleep or sleepiness, or take a medicine to help you sleep or that makes you feel sleepy.
  • have had intense urges or unusual behaviors, including gambling, increased sex drive, binge eating, or compulsive shopping.
  • have a history of uncontrolled sudden movements (dyskinesia).
  • have had hallucinations or psychosis.
  • have liver or kidney 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. Especially tell your healthcare provider if you take nonselective MAO inhibitors (such as phenelzine, tranylcypromine, and isocarboxazid) or catecholamine medicines (such as isoproterenol, epinephrine, norepinephrine, dopamine, and dobutamine), regardless of how you take the medicine (by mouth, inhaled, or by injection).

ONGENTYS and other medicines may affect each other causing side effects. ONGENTYS may affect the way other medicines work, and other medicines may affect how ONGENTYS works.

What should I avoid while taking ONGENTYS?

Do not drive, operate machinery, or do other dangerous activities until you know how ONGENTYS affects you.

What are the possible side effects of ONGENTYS?

ONGENTYS may cause serious side effects, including:

  • Falling asleep during normal activities such as driving a car, talking or eating while taking ONGENTYS or other medicines used to treat Parkinson’s disease, without being drowsy or without warning. This may result in having accidents. Your chances of falling asleep while taking ONGENTYS are higher if you take other medicines that cause drowsiness.
  • Low blood pressure or dizziness, light headedness, or fainting.
  • Uncontrolled sudden movements (dyskinesia). ONGENTYS may cause uncontrolled sudden movements or make such movements worse or happen more often.
  • Seeing, hearing, or feeling things that are not real (hallucinations), believing things that are not real (delusions), or aggressive behavior.
  • Unusual urges (impulse control and compulsive disorders) such as urges to gamble, increased sexual urges, strong urges to spend money, binge eating, and the inability to control these urges.

Tell your healthcare provider if you experience any of these side effects or notice changes in your behavior.

The most common side effects of ONGENTYS include uncontrolled sudden movements (dyskinesia), constipation, increase in an enzyme called blood creatine kinase, low blood pressure, and weight loss.

These are not all of the possible side effects of ONGENTYS. Call your healthcare provider for medical advice about side effects. You may report side effects to FDA at 1-800-FDA-1088.

Please see ONGENTYS full Product Information.

References:

  1. Pahwa R., Factor S.A., Lyons K.E., et. al. Practice parameter: treatment of Parkinson disease with motor fluctuations and dyskinesia (an evidence-based review): report of the Quality Standards Subcommittee of the American Academy of Neurology. Neurology. 2006;66(7):983-995.
  2. Muller T. Catechol-O-methyltransferase inhibitors in Parkinson’s disease. Drugs. 2015;75(2):157-174.
  3. Parkinson’s Foundation. What is Parkinson’s.
  4. Postuma RB, Berg D, Stern M, et al. MDS clinical diagnostic criteria for Parkinson’s disease. Mov Disord. 2015;30(12):1591-1601.
  5. Chaudhuri KR,Martinez-Martin P, Schapira AH, et al. International multicenter pilot study of the first comprehensive self-completed nonmotor symptoms questionnaire for Parkinson’s disease: the NMSQuest study. Mov Disord. 2006;21(7):916-923
  6. Bonifácio MJ, et al. Catechol-O-methyltransferase and Its Inhibitors in Parkinson’s Disease. CNS Drug Rev. 2007;13(3):352-379
  7. ONGENTYS package insert. San Diego, CA: Neurocrine Biosciences, Inc. 2020
  8. Ferreira JJ, et al. Opicapone as an adjunct to levodopa in patients with Parkinson’s disease and end-of-dose motor fluctuations: a randomised, double-blind, controlled trial Lancet Neurol. 2016;15:154–165
  9. Lees AJ, et al. Opicapone as Adjunct to Levodopa Therapy in Patients With Parkinson Disease and Motor Fluctuations A Randomized Clinical Trial. JAMA Neurol. 2017;74:197–206

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