What is “wearing-off ?”
Over time, you may
find that your symptoms begin to come back before it is time to
take your next dose of medication. This change in symptoms is
called “wearing-off.”
Parkinson’s disease is a slowly
progressive disease, in which the symptoms get worse over time.
Therefore, the symptoms you have will change and evolve. The
pattern of symptoms can vary for each person. This means that
everyone’s experience with the condition is different.
Fortunately, symptoms of the disease do
respond well to medical treatments. One of these treatments,
levodopa, has been considered the cornerstone of Parkinson’s
disease therapy for nearly 40 years. It is normally very
effective when it is first used to treat the disease. Over a
number of years, however, some people may see changes in the way
their medication controls their symptoms.
These changes are commonly known as motor fluctuations.
If you are experiencing “wearing-off,” it is important to talk
to a doctor. Medications are now available that may help you
manage this condition.
As “wearing-off” becomes more
noticeable, you may find that the amount of time that you have a
good response to levodopa (known as “on” time) shortens. The
time that you have a poor response to levodopa (known as “off ”
time) may lengthen. It is important to recognize when your
symptoms return during the day. It could mean you are
experiencing “wearing-off”. It may be possible to better control
these symptoms by changing or adjusting your treatment. As these
motor fluctuations emerge, other unwanted side effects may
occur. These include movements you cannot control, known as
dyskinesia (e.g. twisting/turning movements) or dystonia (e.g.
prolonged muscle cramping).

Why do motor fluctuations occur?
In the early stage
of the disease, the brain is able to store enough levodopa and
dopamine. This permits smoother release of dopamine in the
brain. It also provides a more constant control of symptoms.
However, as Parkinson’s disease gets worse, the brain has fewer
cells that can take up levodopa and store it as dopamine for
release when levels are low.
Because of this reduced ability to store
dopamine in the brain, symptoms may return after shorter periods
of time (e.g. “wearing-off”). If someone with a reduced ability
to
store dopamine is given too much levodopa, it can encourage side
effects (e.g. dyskinesia).
How is “wearing-off ” identified?
Because
Parkinson’s disease is a movement disorder, attention has
focused on problems with movement. These are known as motor
symptoms. They are the
major symptoms of the disease and can be easily spotted. The
tools used by doctors to identify “wearing-off” mainly focus on
the return of these motor symptoms. But, you may have other
symptoms when your medication “wears-off” that have nothing to
do with movement. These types of symptoms are known as non-motor
symptoms. They may affect such things as thoughts, feelings
and/or sense of well-being.
“Wearing-off” can include both motor and non-motor symptoms.
Your doctor may not recognise the non-motor symptoms of
“wearing-off” as easily as motor symptoms.
They are less obvious because you cannot see them. You can help
your doctor to identify non-motor symptoms by telling him or her
how and when these symptoms occur.
What symptoms are associated with “wearing-off?”
Following is a
guide to some of the symptoms that you may experience with
“wearing-off.” The key to identifying “wearing-off” is to note
if the symptoms return before it is time for your next dose.
MOTOR SYMPTOMS
Symptoms relating to movement and mobility.
These can include changes in the major
symptoms of Parkinson’s disease, such as:
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Hands shaking |
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Trouble using your hands |
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Trouble getting out of a chair |
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Muscle cramping |
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Trouble speaking |
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General slowness |
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General stiffness |
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Problems with balance |
|
NON-MOTOR SYMPTOMS
Symptoms that affect thought process,
feelings and sense of well-being:
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Anxiety |
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Feeling restless |
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Panic attacks |
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Trouble breathing |
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Insomnia or sleep disturbances |
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Excessive sweating |
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Trouble thinking clearly |
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Slowness of thinking |
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Lack of energy |
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Aching and numbness |
|
When are you likely to experience “wearing-off ?”
Parkinson’s
disease does not affect everyone in the same way. There is no
way to tell if, or when, you might experience “wearing-off.”
However, nearly half of patients experience “wearing-off” within
one to two years of levodopa treatment. So, if you are taking
levodopa, it is important to recognize the symptoms and talk to
a doctor because there is a chance this might happen to you.
Your doctor may
already have determined that you were experiencing
“wearing-off.” If so, he or she may have increased your
medication. For example, if you are now taking more than three
doses of levodopa a day, you may have begun to experience
“wearing-off.”
What if you think you are experiencing “wearing-off?”
If you think
you’re experiencing “wearing-off,” discuss your changing
symptoms with a doctor. There are medications available that can
help manage the symptoms of “wearing-off.” Your symptom control
is unlikely to get better on its own. It may get worse. Once
“wearing-off” is identified, different treatment can be
explored. The more information you give your doctor, the more
options you will have to manage your symptoms.
How is “wearing-off” treated?
If you are
experiencing “wearing-off,” your doctor may look for ways to
change the medication(s) you take. This may improve your
response. You may have to evaluate your daily routine. You may
also have to adjust the timing and dose of your medication. The
doctor my add other medications or combine medications.
Treatment Options
Once in the body,
molecules called enzymes break down levodopa. Unfortunately,
this “breakdown” limits the amount of medication that can reach
the part of the brain where it is needed. There are two main
enzymes that cause the breakdown of levodopa. They are called
peripheral dopa-decarboxylase (DDC) and
catechol-Omethyltransferase (COMT).
Blocking these two enzymes can reduce
levodopa’s breakdown. This helps the medication get where it
needs to go in the brain. Soon after levodopa was introduced, a
medication known as a peripheral dopa-decarboxylase (DDC)
inhibitor was developed. DDC inhibitors block one of the
enzymes that causes levodopa to breakdown. They make sure that
more of the medication reaches where it needs to go in the
brain, which can also cut down some potential side effects, such
as nausea and vomiting. These side effects can occur when
dopamine is at high levels in the bloodstream.
In the 1990s, another class of
medication was developed known as COMT inhibitors. COMT
inhibitors, such as entacapone, provide longer and smoother
availability of levodopa to the brain. Combining a COMT
inhibitor with levodopa can improve and lengthen the amount of
time symptoms are under control. You may start to notice that
your levodopa medication is not working as well as it used to.
If so, share these observations with your doctor or other
healthcare professional. He or she may be able to adjust your
medication to provide better control of your symptoms.

What sort of information is useful to your doctor:
It is important to
help your doctor decide on the best treatment for you. Provide
him or her with a full report of how your medication is working,
including how long it works for you. Also note any side effects.
To help you talk with your doctor, keep a diary to keep track of
when you take your medication.
Record this
information for a few days, then share it with your doctor at
your next appointment.
The types of information you can record
in your diary include:
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The times of day when you take
your Parkinson’s disease medications (i.e. if you take
more than one medication, make sure you are specific).
|
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The times of day when you have
good symptom control.
|
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Which symptoms come back during
the day and when.
|
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What symptoms you experience at
night (e.g. sleep disturbances).
|
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Any complications you may
experience, such as dyskinesia, and their relation to
when you take your medication. |
Sometimes it helps to note your
mealtimes. See if the times of day when you typically eat affect
your symptom control. Some people find it useful to describe
their symptoms with words. You might wish to write down how they
affect your daily life. Use a system that you are comfortable
with and that has meaning for you. A diary will help your doctor
understand what happens when you are not in his or her office.
It will also track your progress when your medications have been
changed. Keeping a diary of your symptoms will give you an
accurate, long-term record to look back on. Your doctor may also
want to keep a copy of your diary in your medical file.
We have provided a questionnaire/diary
card in this website for you to print out. You may want to
create your own. Again, the most important thing is that you
have a diary that is easy for you to use.
Remember to
keep talking to your
doctor – as well as your physiotherapist,
occupational therapist or social worker
– about your symptoms. Work closely
with your healthcare team as much as
possible to make sure you receive the
best available treatment. |
After taking a dose of levodopa, most
people with Parkinson’s disease experience a noticeable
improvement in their symptoms. Over time, however, many patients
notice
that their symptoms return before it’s time for their next dose.
This is called “wearing-off”. Symptoms of “wearing off” include
slowness of movement, tremor, difficulty
moving in the morning and sudden muscle spasms, among others.
To inform your healthcare professional if you are experiencing
any symptoms of “wearing-off”,
please click here to
open a pdf questionnaire for you to print and share it with your doctor.
Click
here to download your free Adobe Reader.
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