Episode 75: Pharmacy Challenges with PD

Dan Keller 0:00

Welcome to this episode of Substantial Matters: Life and Science of Parkinson's. I'm your host, Dan Keller. At the Parkinson's Foundation, we want all people with Parkinson's and their families to get the care and support they need. Better care starts with better research and leads to better lives. In this podcast series, we highlight the fruits of that research—the treatments and techniques that can help you live a better life now, as well as research that can bring a better tomorrow.

Over the years, research has yielded insights into Parkinson's, and those insights have led to a variety of treatments. After diagnosis, people usually start off with medications, and those may be adjusted, substituted, or added to as a person's condition changes. Whatever the treatment, a person with PD should understand why it's being prescribed, how it will affect them, and what cautions may go along with it, such as side effects and interactions with other medications or foods.

In this episode, you'll hear us mention the former Aware in Care hospital safety kit. The Parkinson's Foundation now offers the updated and improved version of the kit known as the Hospital Safety Guide. The guide has new vital information based on research and feedback, prioritizing what's most important: staying safe and empowered when hospitalized with Parkinson's. I spoke with Doctor of Pharmacy Emily Peron of Virginia Commonwealth University, who started the conversation by advising patients to be savvy about their medications by asking the right questions.

Emily Peron 1:58

The biggest question that I think of for people with Parkinson's to ask whenever a new medication is being started is, "How will this medication affect my Parkinson's disease?" I think the second question with that is, "Will this medication affect anything else that I'm taking for Parkinson's disease?" And the challenge here is that medications that are used for Parkinson's disease and for a variety of other reasons can all have interactions. They can cause side effects. And so we want to make sure that a person who's taking a new medication is aware of anything that might show up if they start this new medication. And we also want the healthcare provider to be familiar with the fact that the patient has Parkinson's disease, and that maybe they need to be looking out for different side effects in this person than they would in someone without Parkinson's disease.

Dan Keller 2:45

This applies to all sorts of medical professionals, even including dentists and podiatrists, I suppose?

Emily Peron 2:51

It does. It's interesting—I was just at the eye doctor the other day, and they asked me for my medication list. And I thought, "Oh, that's curious," but really it is anyone who's involved in a person's care. And so that includes, as you mentioned, dentists; it includes eye doctors; it includes podiatrists; and every physician or nurse practitioner or physician assistant that you're seeing for primary care or for specialty care, like neurology, gastroenterology, cardiology, and your pharmacist as well.

I think the piece that sometimes gets lost in the healthcare system is that our systems don't talk to each other. So the hospital system doesn't talk to the local pharmacy that you pick up your medications at, and so we can't see the medications that you're getting from one doctor or another. All we see is what you're getting from us. And so the challenge here is that when you think about a neurologist and a cardiologist, if they're not in the same health system, they can't see what the other one is prescribing for you. And so your medication list that you're providing, or the contact information for the different healthcare providers that you're also seeing, is really the gateway for your physician to know what it is that you're taking. And so I think that piece sometimes gets lost because it is so challenging for us as healthcare professionals to bring in all of the information; and so unfortunately, a lot of it falls on the patient or their care partner.

The challenge here also is that different medications are going to affect different providers in different ways. So something like a dentist—if you are seeing a dentist and you're taking a medication that can thin your blood, that can affect the way that they're going to do surgery. Or, if they're going to do surgery in the same way that if you take something that could worsen tremor, that may indicate that you need to maybe switch something up in terms of other medications that you're taking.

Dan Keller 4:34

I suppose there's also an aspect there of medication timing, if you're going to go to the dentist or have some sort of procedure so that you're at your best and the medication is not going to interfere with other things.

Emily Peron 4:46

Absolutely. The timing of medications in relation to a procedure or to an appointment is something that should be discussed ahead of time. I think a lot of people who are being seen by a neurologist—a movement disorder specialist in particular—they're familiar with whether they're supposed to be taking their medications or if they're supposed to come into the doctor's office in an "on" state on a given day. But I think that that's a really good point, thinking about the timing of medications in relation to appointments, but also just the timing of medications in general throughout the day, so that you're functioning at your best throughout the day, is important.

Dan Keller 5:21

What's the importance of medication adherence, which is just sort of a technical term for taking your medication on time and as directed, and also in that regard, tracking your symptoms according to when you've taken your medication?

Emily Peron 5:36

I'll be honest—I'm a pharmacist, and I know the importance of medication adherence, but I still struggle with it, and I think a lot of people do. It's incredibly difficult to have a lifestyle change like Parkinson's disease, where you might go from taking no medications to taking a medication three times a day, or taking multiple medications. And so the challenge is definitely there.

I think the issue here is that if people aren't taking their medications on time, and particularly as it relates to Parkinson's disease, they can see changes in the response that they have. They may not have the same symptom control if they take their medications on a different timeline one day versus the next. But the other challenge is that they are then at greater risk of side effects of the medications. And so if some people are taking the medications too close together, or taking two doses at the same time when maybe they shouldn't be, that can really affect the way that the medication is going to respond and can affect the way that they're feeling outside of just their Parkinson's symptoms. It can really be a side effect issue as well.

The reason that I talk about the need to track symptoms, especially in the weeks leading up to an appointment with a movement disorder specialist, is because it can really help the provider better understand how to adjust medications. This piece is important to consider because if you are having experiences where you know, "Sometimes I am seeing my symptoms come back at 11 o'clock when they used to really only come back at 12"—well, that information, if you track it, you're less likely to forget to bring it up to the neurologist. And they can also then look at the list and say, "Oh, on this day, based on the fact that you took your medication at 6:00 AM and you had this response at 11:00, maybe we want to adjust the timing of the dose." Or, if you're not getting the same response—the same true response—you're not getting the benefit that you used to, then maybe the dose needs to be changed; you need to be on a higher dose. And so those changes, those nuances between things like changing the timing of the medication versus changing the amount of medication, can have significant consequences in terms of disease control. And so the best way to get at how do we change those medications is to understand how you're taking the medication and how it's affecting you on a daily basis, and really even an hourly basis.

Dan Keller 7:53

One medication that most people with Parkinson's disease have run into at one time or another is Sinemet. First of all, what is it and how does it work?

Emily Peron 8:04

Sinemet is one of the brand names for a very common combination of carbidopa and levodopa. Levodopa is the closest thing we can give you to pure dopamine. When it gets into the body, it's converted into dopamine, and dopamine is that chemical messenger that is lost in Parkinson's disease. But the challenge here is that in order to make it to the brain, where that dopamine is really needed, levodopa needs to make it through the body. It needs to get through the blood and through the gut, and it needs something to protect it on its path to the brain, and that's where carbidopa comes in.

Carbidopa is able to then help levodopa get into the brain where it can have its effect, and it's also able to decrease the side effects that someone might otherwise experience. The most common side effect that we see with levodopa is nausea and vomiting. And the technical term for vomiting, or the medical term, is emesis. So if you actually look at the name Sinemet, this is an interesting fact—the name Sinemet, or "sin" (without) "emet" (emesis), it literally translates into "without vomiting." And so the addition of carbidopa to levodopa was intentional in the sense that it helps to protect that levodopa, but it also helps to prevent that major, major side effect, which was nausea and vomiting before the carbidopa came out. And it's not to say that people can't still experience nausea and vomiting, but that combination of carbidopa plus levodopa significantly decreases the risk as compared to levodopa alone.

Dan Keller 9:35

I think it's also interesting to add that the levodopa can get into the brain, but the carbidopa cannot. So levodopa, once it gets into the brain, can be converted to dopamine, whereas in the systemic circulation—the rest of the body—the carbidopa is acting to not allow levodopa to become dopamine, which can produce these side effects.

Emily Peron 9:59

Exactly. Exactly. The medications in Parkinson's disease are challenging to understand. There's not a lot of them, but they are very complicated. But that's a great point, that the functions of these medications are just really interesting, and better understanding them can help people, I think, better understand the disease also. And it helps make sense, then, of "Why am I taking these drugs together?" and "Why am I taking them so often?" Having this sort of information can be really helpful in just better understanding the "why" behind all of these medications.

Dan Keller 10:30

We hear about impulse control disorders with dopamine agonists. This is different from L-dopa itself. First of all, what's a dopamine agonist and how common are impulse control disorders?

Emily Peron 10:43

When I think about dopamine agonists, I think of "agonist" as a key that's going to unlock a door. And so the same thing is happening in the brain. There's almost like a dopamine door, and you need a key to open it. And so the receptor that dopamine sits on—that's where dopamine would normally go if there was enough of it in the brain, and that's where the smooth muscle movements would come from. But in the absence of dopamine in the brain in someone with Parkinson's disease, we can use a medication like a dopamine agonist, which is going to sit in the same place, open the same door, but it's not actually dopamine. It's just mimicking dopamine, if you will.

So the challenge here is that for the dopamine agonist, one of the side effects that we see with these are what's called impulse control disorders. And impulse control disorders are certainly common in the general population, but are more common in people with Parkinson's and particularly those who have taken a dopamine agonist. And with the impulse control disorders, we're looking at things that might include hyper-sexuality or gambling, shopping addiction, or it can be something like compulsive or impulsive gardening. So sometimes they lean on the bad side, but sometimes they're not so bothersome in general. But I do like people to be aware of them because it is a side effect that sometimes can be uncomfortable to talk about if you're not aware that it could be being caused by a medication.

Dan Keller 12:10

What are some examples of dopamine agonists?

Emily Peron 12:13

The most common ones that we see would be pramipexole (or Mirapex) and ropinirole (or Requip). Others that you see: rotigotine (or the Neupro patch) is a dopamine agonist, although it has less risk of impulse control disorders; and also apomorphine (or Apokyn), which is used really for a rescue medication, is also a dopamine agonist.

Dan Keller 12:36

Do you advise people when they go on one of these drugs that this may occur but is not all that common, or what to do if you do detect it?

Emily Peron 12:47

The challenge here is that the rate of impulse control disorders is pretty hard to predict. There are certain things that we can say: certain people will have a greater likelihood of experiencing an impulse control disorder based on family history or addiction history, or if you're younger, you're more likely to experience an impulse control disorder. Or if you're taking carbidopa-levodopa and then a dopamine agonist is added.

I think the challenge here, though, is that I like people to be aware that in some studies, up to 30% of people who have Parkinson's disease and are taking a dopamine agonist will have some sort of impulse control disorder. The rates vary depending on the study that you look at, but we do know that it's typically greater than 10% of people who will experience these impulse control disorders. The biggest thing that I talk to patients about is just to be aware that it might occur, because the biggest risk that I see is in not talking about it early on and then someone having a financial issue or having some sort of impulse control disorder that's affecting their life, and they're not realizing that it could be caused by medication. And so they're hiding it or they're not talking about it, when, in fact, maybe we could go in and make some changes to the medication, or, you know, just have more conversations about how to overcome these impulse control disorders by other means that would really make the solution much easier to find. It's a fine line between telling someone that you might experience a side effect and having them be worried about it, but I also really tend to err on the side of: I'd rather you know that this might happen so that you can feel more comfortable bringing it up if you do find that these symptoms are starting to show up.

Dan Keller 14:28

We've been talking a lot about medication—that's the whole theme of what we've been discussing. We've talked in a past podcast about the Aware in Care kit for people with PD to bring with them if they're going into the hospital. How important do you think it is, especially having a medication list when being admitted to a hospital? And I suppose part of that is, how important is presenting a "Do Not Use" list to the prescribers?

Emily Peron 14:54

I actually am looking at my Aware in Care kit now, and there's a great pocket card that's in here that has a list of medications that should not be used in people with Parkinson's disease, and also a medication list that's provided. And those two things alone can really be the difference between a successful hospitalization and a really challenging hospitalization.

So I think that part of the challenge here is that not everyone is going to have a movement disorder specialist on staff ready to jump in when someone with Parkinson's is admitted to the hospital. And in reality, when you think about the fact that about 1% of the population has Parkinson's disease, when you hit the ER, the potential exists that the provider that you're seeing sees one in 100 patients, or even less, with Parkinson's disease. And so it may not be something that they're as familiar with treating as, say, high blood pressure or high cholesterol. And so having that list of medications to avoid can help us to start making changes early on and start avoiding these medications that are potentially incredibly common in the hospital. But if a provider who's maybe unfamiliar with Parkinson's disease has this list early, they can then make selections that are better for a patient and start hospitalization on the right step.

As far as the medication list, this piece is critical. I've worked in a hospital; I've worked with people with Parkinson's disease. And one of the biggest challenges we have when someone comes to the hospital—particularly if it's an unexpected hospitalization—is that if we don't have a medication list, we don't start you on things that we don't know you're taking. So it'll take us a while, potentially up to a day, to call the pharmacy that you're using, to call the doctors that you're seeing, to even find out what pharmacy you're using or what doctors you're using, and trying to piece together a medication list. And so anyone with Parkinson's or who is affected by Parkinson's knows that you need your medication on time, every time, in order to be successful. And so if you're missing doses because we're not aware of the medication list, that's an incredible disadvantage then in terms of being able to participate in things like physical therapy or to be discharged on time. So I think those two pieces are incredibly important, and I'm so glad that you mentioned them.

Dan Keller 17:05

Is there anything important to add or that we've missed?

Emily Peron 17:09

Part of the challenge here is absolutely the medication list and providing that at every appointment. If you do it as a habit, it becomes a lot easier. But presenting that medication list—having it in your pocket in case there's an unexpected hospitalization, and also having a couple of these medication lists floating around, having a care partner with access to one... if you're using one pharmacy, that means that we have one list; we don't have to call multiple pharmacies to try to get information. And so I think those pieces—finding who can be a partner in your medication management, whether that's a care partner or a pharmacist or other people in your life—can be really, really valuable.

The other thing that I would say is that if there's a change in the medication that you're taking—this is something that I see a fair bit with people who are picking up their medications from the pharmacy—if there's a change in the color or the makeup of the drug and you're not sure if it's the right one, or if you notice that you're not responding in the same way that you used to, feel free to call the pharmacist or ask the pharmacist if this is the right medication. Sometimes there are changes in manufacturers or from brand to generic, but you should feel empowered to ask those questions. I always tell patients that you're paying for a service, whether you're purchasing a medication or you're paying for a co-pay at a doctor's office. And so it's okay to ask those questions and to keep asking questions if you feel like there's more information that you want or need.

Dan Keller 18:35

Very good. Thanks. That's a lot of information; I'm sure it's going to be very helpful. Just to keep in mind for people with PD, with these thoughts in mind, it's a good time to mention Patient Safety Awareness Week, which happens every March and aims to improve the safety of the healthcare system both for patients and for people working within it.

In honor of this, be sure to listen to our podcast called Practicing Hospital Safety. One safety measure you can take for yourself is to use the Parkinson's Foundation's Hospital Safety Guide to help you convey important information about your PD if you're hospitalized. It includes tools to help educate the hospital staff caring for you and highlights the importance of medication timing and medications that should be avoided for people with Parkinson's. You can order this free guide on our website at parkinson.org/hospitalsafety or by calling our helpline.

Be sure to check out our medications fact sheet on parkinson.org/library along with our podcast episode titled Introducing our Hospital Safety Guide, which provides more information about this resource to help you prepare for a hospitalization, whether it's planned or unplanned. As always, our PD Information Specialists can answer questions and provide information in English or Spanish about this topic or anything else having to do with Parkinson's. You can reach them at 1-800-4PD-INFO. If you have questions or want to leave feedback on this podcast or any other subject, you can do it at parkinson.org/feedback.

If you enjoyed this podcast, be sure to subscribe and rate and review the series on Apple Podcasts or wherever you get your podcasts. At the Parkinson's Foundation, our mission is to help every person diagnosed with Parkinson's live the best possible life today. To that end, we'll be bringing you a new episode in this podcast series every month. Until then, for more information and resources, visit parkinson.org or call our toll-free helpline at 1-800-4PD-INFO, that's 1-800-473-4636. Thank you for listening.

Emily Peron, PharmD, MS, is Associate Professor of Geriatrics at Virginia Commonwealth University (VCU) School of Pharmacy. She earned her Doctor of Pharmacy degree from Butler University and then completed clinical residency training at the Louis Stokes Cleveland VA Medical Center, where she specialized in geriatric pharmacy. Dr. Peron went on to earn her MS in Clinical Research while completing a research fellowship at the University of Pittsburgh. She is currently pursuing a PhD in Health-Related Sciences with a Concentration in Gerontology through the VCU College of Health Professions.

Dr. Peron’s participation in the 2009 American Society of Consultant Pharmacists Foundation Parkinson’s Disease (PD) Pharmacotherapy Traineeship initially sparked her interest in PD. Shortly thereafter, she identified a drug-induced tremor in her grandfather, and she has since committed her career to improving medication use for individuals with movement disorders. More than a decade later, Dr. Peron consults with patients and healthcare professionals about PD medication management and teaches PD content to students in the VCU Schools of Pharmacy, Nursing, and Physical Therapy.

In collaboration with the VCU Parkinson’s and Movement Disorders Center, Dr. Peron conducts research on the appropriateness of medication use for people with PD during hospitalization. She is a member of the Parkinson’s Foundation Aware in Care Advisory Committee, which focuses on making hospitals safer for people with PD. She is also a regular speaker at movement disorder support groups, community outreach events, and continuing education seminars, taking an Aware in Care Kit with her wherever she goes.