Your Role in Medications – Webinar Notes Stanford PD Community Blog

On May 5th the Parkinson’s Foundation hosted a webinar directed toward caregivers titled Your Role in Medications.  Movement Disorder specialist Ihtsham Haq, MD, spoke for an hour on recognizing medication reactions, how to differentiate ON and OFF symptoms, and how care partners can help their loved one with Parkinson’s navigate medication issues.

It is less critical for people with Parkinson’s in early stages to take their medication on time, every time.  As your brain loses more cells involved in the production and storage of dopamine, it becomes more critical and you may experience symptoms caused by your medication wearing off, or OFF symptoms.

Dystonia, or muscle cramping, is an OFF symptom.  The solution is to keep a medication timing/symptom diary and show it to your neurologist.  This will help him/her to adjust your medications to minimize wearing off.  This may mean taking carbidopa/levodopa (Sinemet) more often, adding a medication extender or dopamine agonist, or switching to an extended release formulation.

ON symptoms are caused by too much levodopa.  Dyskinesia, or excessive movements, are an ON symptom, as are hallucinations after a medication adjustment.  The solution to ON symptoms is to inform your neurologist and medication adjustment.

The webinar can be watched on the Parkinson’s Foundation YouTube channel.  

For more information on medications used in PD, please see this Stanford Parkinson’s Community Outreach webpage: 

PD Medications

And now, on with my notes…

– Denise

“Your Role in Medications” – Webinar notes

Parkinson’s Foundation

Your Role in Medications, May 5, 2021

Speaker: Ihtsham Haq, MD

When should people with PD start taking medications?

This is the first question Dr. Haq hears from newly diagnosed people.  Medications only treat symptoms.  They do not make symptoms progress faster or slower, so you should start taking medications when symptoms begin bothering you or become a safety hazard, like impairing your balance so you are falling.  If you are falling and haven’t started medications yet, your doctor should insist that it is time to start, for your own safety.

You don’t need to delay therapy for any reason.  The current consensus among movement disorder specialists is that the rate of complications is roughly the same whether you start medications early or late, whether that be levodopa or dopamine agonists.  

People also wonder if they start taking medications early, won’t they run the clock out on its usefulness?  You will need just as much medication to treat your current symptoms as you would have if you’d been taking it all along.  The amount you need is based on where your brain is at, not how much medication you’ve taken before.  

How do PD medications impact the progression of PD and onset of new symptoms?

Medication doesn’t have an impact on disease course with one caveat; without medication you move more stiffly and slowly, which makes it more difficult to be active.  Being less active affects your health overall, and it is the worst thing you can do if you have PD.  We know that exercise keeps you flexible, strong, and delays progression of symptoms.  

Also, exercise is important to keep your balance intact and keeps you strong.  This should keep you from stumbling, catching your foot on things, etc., and keep you from falling and becoming injured.

How important is the timing of medications?

How often you take your medication and how closely you take your medication to on time becomes more important the longer you have PD.  

The cause of PD is the loss of the cells that release and store dopamine.  The absence of dopamine inhibits the messages from your brain to your muscles and makes it harder to move.  In the early stages of PD, the timing of your medication isn’t as crucial because your body is still making some dopamine and what it doesn’t use it can store for later.

As the disease progresses you have less and less of these cells, thus less dopamine is released and the ability to store it becomes limited.  Eventually, your body will be dependent on dopamine replacement medications because your body is neither releasing, nor storing medications.  At that point the timing of your medications is crucial because carbidopa/levodopa lasts in your bloodstream for only about two hours. 

There are a lot of things you and your doctor can do to extend the window of medication effectiveness, like adding another medication to make it last longer, or adding a dopamine agonist to help your body more effectively take up any dopamine still in your system.  This requires close collaboration with your neurologist or movement disorder specialist.

Talk about the difference between general neurologists and movement disorder specialists.

The best PD care comes from having a complete medical care team.  That includes seeing a movement disorder specialist (MDS) annually or every six months.  MDS have more experience with PD than many general neurologists, but there are general neurologists who are perfectly competent at treating PD.  

Drug companies tend to come to MDS with new medications and treatments first, but eventually that information trickles out to general neurology.

What can care partners do to help their loved one take medications on time, every time?

This is most important in mid-to-late PD stages.  Once a person has reached the place where taking medications on time becomes more crucial, here are some tips.  Keep the medication at the bedside so it is easy to take that first dose in the morning.  Keep it with you when you travel, along with a bottle of water.  Chewing your pills will make them kick in about 15 minutes, especially if you take it with something acidic, like a cola.  Most people use the timer on their smart phone as a reminder.

Talk about getting medications on time in the Hospitalization and how care partners can help with that.

Get the Aware in Care Kit to prepare for hospitalization.  It’s FREE from the Parkinson’s Foundation!  

Hospital staff usually aren’t familiar with how time sensitive taking PD medications can be.  This is because most medications don’t wear off in just two hours.  Two hours is the window in which hospital staff are instructed to administer most medications.  It is helpful to have the Aware in Care Kit to use as an instructive tool for hospital staff, who may not take your word for it, but are more likely to believe what they read from the Parkinson’s Foundation.

How can care partners recognize medication reactions and what should they do if they do notice one?

These are short acting medications so any reaction will pass quickly.  

It can be hard to tell if you are seeing a medication reaction or the result of not taking the medication exactly on time.  Sometimes, what you are seeing is a symptom of the medication wearing off.  For example, say you take your medication every 3 hours; that is as long as it lasts, and it takes about 30 minutes for your next dose to kick in.  Before the medication kicks in you may see hand cramping.  It is natural to assume the cramping is a medication reaction to having just taken the medication, when in fact it is a symptom of the medication having worn off.
Telling the difference between an ON symptoms and OFF symptoms can be difficult.  It is not something you learn overnight.  It takes weeks, or months of keeping a medication/symptom diary and having discussions with your MDS.  There is a lot of literature to help.  In general, ON medication symptoms are excess movements and OFF medication symptoms are mostly a lack of movement.

The first medication reaction people usually think of is dyskinesia, which is an ON symptom of excess movements that appear as restlessly moving torso, arms, legs, or head.  People often don’t realize they have dyskinesia, but those around them do.  An OFF symptom is dystonia, which is muscle contractions that can be painful.

If it is an ON medication reaction the best thing to do is bring the issue to your doctor and adjust medications.  There are three exceptions.  The first is a couple extender medications, especially Resageline & Selegeline, which can interact with cough syrup (contains Dextromethorphan) to produce a fairly dangerous reaction called Serotonin Syndrome.  It would feel as if you’d drunk a couple pots of coffee all at once.  You can become sweaty with a racing heart.  You don’t need to call an ambulance, but it is unpleasant.

The second is impulsivity.  Medications can change your personality.  We don’t know who is more or less susceptible to this.  It doesn’t happen much with levodopa but happens about 15% of the time when people take dopamine agonists.  Mirapex, Reequip, and Rotigotine all have about the same chance of causing impulsivity.  People become interested in gambling, pornography, etc.  If it happens, tell your physician, and get instructions for how to reduce or stop the medication.

Hallucinations can happen as a medication reaction.  This doesn’t happen to everyone with PD and they are more commonly seen in those who are beginning to have cognitive changes.  Definitely let your physician know for a medication adjustment, but it may be the first indication that there are cognitive changes happening.

Say more about cognitive changes around new medications.

Hallucinations can be an early sign that cognitive changes are occurring.  Hallucinations usually start out quite mild and for most people they stay quite mild.  Word finding difficulty is more prominent than memory issues.  Parkinson’s is not Alzheimer’s disease, so the kind of deficits people get from PD tend to be different.  Executive functioning becomes more difficult, like organizing, multi-tasking, and impulse control.  

If cognitive issues pop up it really deserves a workup.  Often it is from something other than PD.  It can be a B12 deficiency or a hyperthyroid issue.  Sleep apnea can cause cognitive difficulties and a c-pap machine can resolve this.  Cognitive deficiencies can also be caused by depression and apathy.  Depression in PD responds well to antidepressants.

Who on the Parkinson’s care team should be part of the conversation regarding medication management?

Your primary care physician should be involved.  Everyone should have a neurologist.  This can be a MDS.  Most neurologists don’t feel threatened by an MDS on the care team.  Nurse practitioners should also be part of your care team.  Medical assistants should be taking your calls and forwarding them to the doctors.

Where is the best place to learn more about medications, both motor and non-motor?

Most places will tell you the same information, which should be comforting in that the information is accurate.  The Parkinson’s Foundation is excellent.  The Michael J. Fox Foundation is also excellent, especially if you want to participate in research.  Your MDS is a good source of information.  Specialists, in general, have more time to spend with you, which allows time to ask questions.

Support groups are a great source of practical information.  Other patients will discuss things that your physician doesn’t think to bring up.  Medications are a hot topic at support groups, especially how different people respond to the same medication.

What can care partners do to describe symptoms meaningfully, especially when the person with Parkinson’s (PwP) is in denial?

The answer to this is worth splitting into what to do when your loved one has cognitive issues vs. what to do when your loved one does not have cognitive issues.

When cognitive issues are not present care partners are likely to recognize things that the PwP does not.  For example, if a PwP has REM Sleep Behavior Disorder (RBD) they do not know they are thrashing about or talking in their sleep, but a care partner would observe this behavior and it is very important for the neurologist to know about.  Also, Mild dyskinesias are also not noticeable by the PwP, but a care partner may notice.  Care partners can be better at noting the timing of when symptoms are happening with respect to when medications are taken.  This is critical information for doctors to have this information when doing medication adjustments.

Also, the vocabulary you use to describe PD symptoms may mean something different to an MDS.  Rather than saying dyskinesia, it may be better to describe and demonstrate how the hand was twisting, for example – even take a quick video with your phone to show the doctor.  Videos have a time stamp, which you can corelate with medication timing if you take meds on time.

If there are cognitive issues, a care partner you can supplement what your loved one tells the doctor in a kind way.  After your PwP has explained their perspective you can say, “I understand that is what it seems like to you.  This is what it seems like to me…”

What are some practical ways care partners can track and report the ongoing changes in their PwP as far as documenting symptoms?

Keeping a diary to track medications, and symptom intensity.  They can also track meals, exercise, sleep, etc.  Video on your cell phone is a great way to show the doctor what you observe.  Write questions in the margins and highlight them so you don’t forget to ask the MDS.  Don’t forget to take the diary to your appointments or keep your diary on your phone.  You are unlikely to forget to take your phone.

What can be done about the cost of medications?

Make sure your physician knows which medications you can’t afford.  There are so many different insurance plans, your doctor can’t possibly know whether your insurance will cover what he/she prescribes.  If a prescription is too expensive for your budget, don’t pick it up from the pharmacy.  Jot down the price and call your physician to see if there is a less expensive alternate.  Usually there will be.

The most expensive medications tend to be newer and those that extend benefits, like how long the medication works.  Your doctor may be able to prescribe an older medication you take 3 times daily, rather than 5 times daily for a fraction of the price of the newer, longer lasting drug.  It works just as well, but you have to take it more often because it doesn’t have a second component that makes it last longer.

Try contacting your insurance company.  It isn’t easy, but if you have the patience, sometimes you will learn (for example) that they will cover the more expensive medication (or reduce your co-pay) if they receive a letter from your doctor saying alternative drugs don’t work for you.

There are many patient assistance programs that help cover the cost of medications.  A social worker can help you find them.  One in particular requires you to present a quote from your pharmacy for the expensive medication.  You submit that to your physician, who submits it to the pharmaceutical company, who then covers the cost of the medication for the next year (sometimes longer).  Some of these patient assistance programs offered by pharmaceutical companies require demonstration of the need, and that high quote is demonstration of the need.
Support groups are another source of information as to how others have coped with the high cost of prescriptions.

How can care partners advocate to get the cost of medications down?

People think they don’t have a voice, but you do!  Dr. Haq participates in Neurology on the Hill as part of his work with the American Academy of Neurology, to discuss issues with lawmakers in congress.  When you make known to your physician the struggles you have with the cost of medications, especially in written form, you become the firsthand account for him/her to relay to congress.

There are also a number of advocacy groups you can become involved with or donate to with congressional lobbyists on the issue of medical and healthcare costs and coverage.

Listener Questions

Q. When should PD patients start treatment for depression, anxiety, or other emotional symptoms?

A. There is nothing gained by waiting.  As soon as there is a question that these mood symptoms are present, it is time to discuss with your physician about how to treat them.  The treatments for these issues are just as effective for a PwP as for the general population.  Your primary care physician can prescribe them.  There’s no need to see a specialist.

Q. Please comment on the effects of medication (both positive and negative) on cognitive changes in PD?
A. Carbidopa/levodopa remains our mainstay treatment because it is relatively free of cognitive impact.  It doesn’t last as long in the body, so when we add dopamine agonists to extend the availability of dopamine, those agonists can cause some issues.  About 30% of people using agonists experience some sleepiness.  Some people also experience sleep changes.  There’s also a much higher percentage of people who experience cognitive changes from dopamine agonists.  

Many people are on medications for other conditions, especially anticholinergics used for bladder control, depression, or tremor.  These medications can cause confusion, particularly in people who already have some cognitive impairment.

Q. Do you have any thoughts on preventing night-disturbances or medication regimens at nighttime?

A. Sleep can be disturbed for many reasons.  RBD means you’re not getting to really deep sleep and may feel tired the next day.  We use melatonin to treat that (5-15mg).  It is over the counter and doesn’t interact with much, so it’s a safe thing to try.  If that doesn’t help, try a low dose of a benzodiazepine.  Also, treat sleep apnea with a c-pap machine.  You can also have issues with motor issues at night, like difficulty rolling over.  That’s a matter of fine tuning your medication so it lasts through the night.

Q. Medication effects and safe driving?  Are there medications or medication effects that make it unsafe to drive?

A. The main reasons you have issues driving is if your cognition is not where is should be, if you’re sleepy, have dyskinesia, or if you’re off medications and are too slow to react due to bradykinesia.  Make sure your symptoms and side-effects are under control.  What we do in clinic does not assess ability to drive!  PwP usually don’t notice that they are not driving well.  If there is any doubt, an occupational therapy driving evaluation is the way to go.  They are objective.

If you or the PwP thinks there is a driving issue, you’re probably right.

Q. If an unwanted side-effect is noticed, how easy is it to change that medication or brand of medication with your doctor?

A. It is as simple as keeping track of when you take every medication and discuss with your doctor the pros and cons of changing.  Most medications work quickly and wear off quickly, so changes can be made easily.

Q. When would DBS be appropriate?

A. DBS is very good for tremor that medication doesn’t touch, other symptoms medication doesn’t treat long enough (on/off fluctuations), and dyskinesia. When any of those issues pops up and is a problem, it is worth discussing with your doctor.  There is an evaluation process to determine good candidates.  It is not right for everyone, but there is no reason to wait.

Q. Is it okay to take medications at different times of day, depending on when I wake, as long as they are taken every 4 hours?

A. Yes!  Consistency of duration is more important information for neurologists than keeping on a specific time schedule.

Q. What would you recommend for memory loss or Parkinson’s disease dementia (PDD)?

A. Acetylcholinesterase inhibitors, Exelon/rivastigmine, Aricept/donepezil can make a significant difference.  They were developed for Alzheimer’s, but they are very effective for PDD.  Exercise can have a profound effect on cognition and motor symptoms.  It is important to ensure there aren’t additional issues responsible for diminished cognition.

Q. How do you treat fatigue?

A. First, you need to figure out why the person is fatigued.  It can come from excessive OFF time during the day because fighting stiff muscles all day is like dragging around an additional 30 pounds.  

Ensure you are getting good sleep quality.  It’s not how many hours you’re in bed, sleep quality is crucial.  
Do what you can for OFF symptoms overnight.  Either use an extended-release carbidopa/levodopa, add a dopamine agonist at bedtime, or take an additional Sinemet during the night so you can get back to sleep.
Talk to your doctor about other things that can contribute to fatigue, like depression, lung disease, thyroid disease, etc.

Q. When do you know it’s time to start attending appointments with the PwP, or is there ever a time medical staff would recommend a care partner attend a medical appointment?

A. As far as when to check to see if the symptoms you observe are because of Parkinson’s; as soon as possible. There’s not a whole lot of advantage to waiting.  Getting diagnosed early is getting good advice and starting an exercise program early. 

In terms of when you see an MDS, it can’t be too early.  The worst thing that can happen is that there’s no evidence for concern now, but it makes it easier to get a second appointment.
Please attend medical appointments with your PwP right away, from the beginning.  The only reason not to attend is if the PwP feels otherwise.  I have never found a situation where the care partner’s input wasn’t invaluable.

Q. Is there a standard test to establish a baseline of cognition?
A. Short tests don’t tell you as much as longer tests.  Most doctors’ offices will do the Montreal Cognitive Assessment (MOCA) is only 5-10 minutes, but it is just a screening.  Neuropsychological testing is three hours and will tell you much more.  Nobody feels like they ‘passed’ it because it is designed to catch deficits and identify strengths.

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