Episode 181: What to Know Before Taking Nutritional Supplements for Parkinson’s

Dan Keller 0:05

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.

People with Parkinson's disease may use and benefit from nutritional supplements, but some ingredients can have unintended side effects, either causing harm on their own or through interactions with other supplements, or prescription or over-the-counter medications. Since there is no federal or official agency that formally approves and regulates nutritional supplements, it's up to individuals to stay informed and be vigilant about what they take. Fortunately, medical professionals can help, and pharmacists, in particular, are an excellent resource. In this episode, Dr. Angela Hill of the Taneja College of Pharmacy at the University of South Florida offers suggestions for choosing supplements wisely, beginning with reading the label on the package and relying on the pharmacist for expert knowledge. She also highlights some common supplements that people with PD often ask about, and what they should consider before adding them to their routine. So, let's talk about nutritional supplements. I'm sure a big interest of people, but I wonder how informed they are. So, first, do you have any sort of general disclaimers or precautions in this regard about supplements?

Dr. Angela Hill 2:11

Yeah, you know, in general, being a pharmacist who deals with prescription medications, I know probably about 40% of patients who are living with Parkinson's disease are using herbals. We see a lot more use in other countries, and herbals, you know, are traditionally considered medicines for the most part, but we're using parts of the plants that have to be harvested, and so there's a lot of unpredictability about it. I always just like to caution people that these products are not regulated the same as some of the things you would buy from your standard community pharmacies, so when we use them for chronic diseases, sometimes we have some issues. The whole issue about FDA approval is just really, really important, because we learn a lot about a lot of these products after we use them, because we lack a lot of the studies that tell us as much as we need to know really about safety and efficacy.

So when people do choose to use them, I think keeping them last resort or definitely making sure that the providers, the neurologists, the doctors are involved is important. And I especially want to emphasize that this is an opportunity for consumers to really capitalize on how pharmacists can kind of really help make sure they don't have any problems with the herbal product, or that they don't upset other comorbid problems that they actually have. So I think in general herbals might be an option, because some of them do provide neuroprotective effects, some of them do address or support some of the collateral symptoms that we see with Parkinson's, like sleep issues or memory issues. There are some that have shown to be helpful in animal studies, where they may be minimizing tremors, but it may not necessarily be consistent, and some of them provide antioxidant effects. So we talk a little bit more about some of these precautions. I just like to remind people that there is a reason that we do research, so that we can come with standardized ways to help patients, and so the herbals, I think they do play a role, but maybe we kind of reserve them when people aren't responding to some of the typical therapies, or we look at them as not substituting our standard therapies, but instead just being supportive or enhancing.

Dan Keller 4:29

How much do neurologists or doctors in general know about a lot of these things? I think pharmacists may be better informed.

Dr. Angela Hill 4:38

Being a pharmacist, obviously, I'd say we are probably a lot more informed than them, because we do do a deeper dive in general with medications and understanding them. I can't speak totally, but I will say they're aware; they probably get a minute understanding, but most times by the time they specialize in different things like that, there are a lot of other things related to the use of herbals, regulations, product selection, drug-herbal interactions, where I think the pharmacist probably may have a little edge. And so what I like to purport is, if we can have provider-pharmacist teams, then we do better justice for the patient, because the providers bring to the table a wealth of knowledge about the patient, sometimes that we aren't always akin to, and so I do think it's an opportunity for teamwork.

Dan Keller 5:29

So supplements are complementary to prescription Parkinson's medications, and I assume they, as you had said, can provide some benefit, but what about drug interactions? People may not consider a herbal substance as actually being a drug.

Dr. Angela Hill 5:48

Yeah, most times they don't. And we've made several of our prescription-grade products from plants. In general, about 30 to 40% of what we use actually originated from a plant source. We use the leaves, we use the roots, we use the extracts, or things of that nature, but one of the challenges that we have when people choose to use the herbal products, if they're also taking prescription-grade products, sometimes we're duplicating the ingredient—particularly levodopa, which we know is available, like in fava beans, or if you've heard of the velvet bean or cowhage, that's an herbal product. They both contain levodopa in them, so when we have a person who's using both, then sometimes they can end up having more side effects from getting too much exposure to levodopa than they normally would.

In some cases, using a product like levodopa, when we take it with certain vitamins like iron or calcium, we can have situations where the levodopa may or may not start working or work as effectively, because it's not absorbed correctly. Things like just protein in our food can also interact with levodopa, so these are some of the things that pharmacists would certainly emphasize as we're interacting with patients about some of the precautionary things to think about. Another example would be vitamins like B6 that can actually be depleted by levodopa, so we have to strategically figure out how do we still supply it, because B6 plays a vital role in terms of brain health and other metabolic processes, but we need to be aware. And sometimes it's just a matter of us being able to tell a patient what time they should take these products, so we can avoid the drug interaction, but that's again a knowledge that pharmacists tend to utilize a lot more than maybe some of our other professionals.

So again it's encouraging, because you think these are plant-based products and they shouldn't have side effects, shouldn't have drug interactions, but that's not the case. And we've seen that, like with products like Ginkgo biloba, which patients with Parkinson's might be tempted to use to help out with memory—it also has very potent antioxidant effects, but at certain doses patients can actually bleed or bruise. We see the same thing with ginseng when it's used, melatonin when used just for sleep. You think, oh, it's just going to help my sleep, that's all it's going to do. But sometimes, if patients take it, we might end up with depression and other problems with long-term use. So again, that's where patients wouldn't always know that, and the only clue that they sometimes get that there's a problem is that their Parkinson's symptoms are getting worse or seemingly not responding to the other therapies.

Dan Keller 8:32

So, how can they pin that on the supplement if that's what's causing it?

Dr. Angela Hill 8:37

Well, a lot of times we pay attention, and a pharmacist would ask how long you've been taking certain medications. Usually the advantage of using a pharmacist is we're looking at the entire patient, and sometimes when you go to a specialist, like a doctor, a neurologist, or a podiatrist, for that matter, they may only focus on the area that they're treating and may not pay attention to other medications that could be taken that could interact with a particular medication or worsen a certain disease. And so that's why I said it's always really important that everybody is on the same page in terms of what's being used and why it should be used.

There are some situations where the patient doesn't know—they're reading things, they're seeing things on the internet, and then they go down this rabbit hole thinking everything is great, because typically when you go down those sources, they only tell the good parts associated with using these products and leave out things like the side effects. And so some consumers don't know, but we do pay attention to how long a person has been taking a medication, changes in the symptoms that the regular medications are expected to treat, and then overall quality of life. And I promise you, patients will let you know when things like sleep, or their stomach is upset, or appetite, weight changes, those kind of things occur. We actually also use those as a gauge to see how patients may respond to medications and/or herbals.

Dan Keller 10:06

I suppose if people think that a supplement is going to have a positive effect, they have to assume that it's got some active ingredients in it, which, like almost anything we take, especially drugs, can have unintended consequences. So I think it's just good to be aware that these are active compounds, many of them.

Dr. Angela Hill 10:28

You're right, and some of the issues that we have with herbals is that sometimes you can have allergies because these are plant-based products, right? Or sometimes they cause stomach upset, but we don't often know until the patient actually takes it. And because as individuals we vary based on age and other factors, and if I have a certain health condition, sometimes my response to that herbal or regular medication may change just because of that, so we can't make any assumptions that all of this is as safe as we'd like it to be. But what we do kind of avoid sometimes with these products is exposure, maybe to dyes and other fillers, things like gluten that might be used in some of our processed medications—they can also purport allergies and different things of that nature.

But the challenge that we have with herbal products, which is a safety measure, is they're not regulated like prescription-grade products, and so we don't know a lot of times about how long they should stay on the shelf before we discard them, meaning their shelf life or expiration date, for that matter. And we've had challenges. Some of these products have been adulterated or misbranded as containing a certain product or a certain amount of product or a certain amount of a product at a certain potency, or they weren't harvested at the appropriate time. And so anytime we cut corners and don't have standardization in manufacturing of these products, then that means that the patient may or may not benefit from use of that product, so that's where the safety concerns kind of come into play.

Dan Keller 12:10

So, since they're not FDA regulated, is there a trusted source, a seal of approval that people might look for?

Dr. Angela Hill 12:18

Actually, there are. So, there is an act that was approved in 1994 called the Dietary Supplement Health and Education Act, or an acronym would be DSHEA, and it actually does spell out things like labeling requirements, the therapeutic claims that products can make—for example, they can't claim to cure or prevent or treat a medical problem, so you'll see wording like "supports knee health" or "brain health," those kinds of things. But also they require that the facilities that make them meet certain standards, that we're able to get in touch with the manufacturer, and then some of the other things that should go along with using these particular products is that they are definitely packaged appropriately, and we have different kind of products that do require different packaging. But the DSHEA Act is as close as we get to maybe something that is outlining a guideline or expectation of what the end consumer should actually use as a guide to whether or not to use a product, and if they don't know what to look for, health professionals like pharmacists can certainly help with that.

Another measure that is in place is that there are certain labels sometimes that show up on the products that tell you that it's been tested for quality or that the label meets compliance, and there are certain things again that a pharmacist would know to advise the consumer to use this particular product or that product. And there are certain brands that pharmacists like myself recommend as being trusted, because we know those companies may also make prescription-grade products, which mean that their facilities are in compliance with good manufacturing standards, and again, all of that speaks to guaranteeing a good patient experience if consumers choose to use these products.

Dan Keller 14:10

How should a person read the label of one of these products? What should it contain? What kind of information?

Dr. Angela Hill 14:17

Well, when you look at a label for an herbal product, it will look very similar to what you see, like on a vitamin or a nonprescription product, but it should minimally tell you what that ingredient is, and it may describe it using the chemical name or the species name, as well as a common name. And so it'll tell you the part of the plant that the herbal was obtained from, it'll tell you the strength, etc., and then any other ingredients that are in there. Also, you'll see that statement somewhere else on the product that says, "This statement has not been evaluated by the FDA. This product is not intended to diagnose, treat, cure, or prevent any disease." That should be something they should look for. They should also look for the manufacturer's contact information, and then again, any of those safety labels.

Now, there's no law saying that they must provide those labels, but that's an extra assurance for consumers that the product, again, is what it states, because again, we've had issues where people have gotten things that they didn't want—dirt, tar, poisonings, rat poisonings, in particular, where they were actually put inside a capsule and put inside a bottle, and because, again, there are no safety measures that they must go through and no requirements for testing prior to marketing, they've actually, unfortunately, made it to some consumers with not-so-good outcomes. So, in reading the label, there are things you can look for, but you can also vet and double-check again using the pharmacy, because the pharmacy is oftentimes where you can get the majority of these products. There are health food stores, but they typically don't have pharmacists in them, and so I would encourage consumers not to buy products where they wouldn't have access to a healthcare professional that can kind of help guide them on product selection, as well as product quality.

Dan Keller 16:08

In these cases, the doctor can be out of the loop. Essentially, people can walk into the pharmacy, take something off the shelf. The pharmacist seems to be the main point of contact and information. What should people ask the pharmacist? Should they bring up a bottle to the pharmacist and say, "What do you know about this stuff?"

Dr. Angela Hill 16:28

Yeah, well, first of all, the common use of the product. Now, one of the things that differentiates herbals from prescription-grade products is that we do a lot of testing to prove that a blood pressure medication will actually affect the blood pressure. What you'll see with herbals is that an herbal product may help with inflammation, it may help with migraines, it may help with seizures, meaning that there might be multiple uses. So, the first thing is to confirm with the pharmacist that product A is indicated for whatever it is the consumer needs it for, and then ask the typical questions you would ask with any medication, like are there drug-drug interactions, drug-food interactions. What time should a person take the medication? In the case of Parkinson's disease, we have concerns about protein that's in food and/or vitamin products like iron and calcium affecting the absorption of levodopa.

So, certainly, having a conversation with pharmacists about whether or not there might be other ingredients in that product that could affect or compete for absorption with a prescription that they may also be taking for Parkinson's, like levodopa. Again, the pharmacist can help them check and make sure it's a quality brand, and also there's drug-herbal duplication that I kind of mentioned earlier, so we want to make sure that again you have a health professional's eye who can help distinguish the chemical name of a product versus the common names. For example, that velvet bean, the chemical name is Mucuna pruriens, which is hard to even pronounce, being a pharmacist, and so the consumer might not have any clue that that's cowhage, which is a common name, or velvet beans, which is the other name. And so that's where having that health professional confirm this is the right thing helps, because we've had a lot of consumers who've been misled in using products like Ephedra, which isn't often used for Parkinson's, but it's been used in a lot of weight loss products. And because consumers were trying to work around some of the dosing limitations in products, they would switch to that chemical name and the consumer would be totally blind as to what that chemical name was compared to the popular name. So I think the pharmacist again is a great source to be able to assure that you're getting what you expect, you're getting a quality product, and that things like drug interactions are avoided, and we don't want to in any way worsen Parkinson's disease symptoms by not being able to avoid having our prescription-grade products administered at the same time as our herbal products and causing problems there.

Dan Keller 19:12

The drug you just mentioned, the species name Mucuna pruriens, does it cause itching or treat itching?

Dr. Angela Hill 19:21

Neither. So it actually is an herbal that contains levodopa in it, and so there's been a lot of data showing actually this is one of the few herbal products where there are actually double-blind, placebo-controlled studies showing that it actually is as effective as levodopa, and even taken long term, there's been some consistency and resolution of the symptoms—not to the extent where we say it slows down or cures the disease, but because of a lot of these regulatory issues that I mentioned, it has not been approved as a standard of care or as a substitute for levodopa. So we still recommend that levodopa remain the primary or first-line therapeutic approach to addressing it.

Fava beans also have been another dietary source where they contain levodopa, but we don't have the studies to say that this is the route that we should go instead of using levodopa just yet. But people who ingest it, there have been some case reports that claim it seems to have helped, but fava actually also contains iron and magnesium and potassium and zinc and a whole other host of vitamins, and their antioxidant effects might be contributing in some way to the benefits, but we also have certain individuals that may not be able to metabolize it, who could develop certain anemias and other problems from being exposed to it. So that's why we don't want consumers to just blindly use this stuff. They need to really incorporate first their providers and then capitalize on using the pharmacist, letting the nurse know, letting everybody involved in their care be aware of these products if they choose to use them.

Dan Keller 21:02

I suppose if you're from the Southern Mediterranean, you may have a genetic variant that predisposes you to favism—glucose-6-phosphate dehydrogenase deficiency.

Dr. Angela Hill 21:13

Exactly.

Dan Keller 21:17

Very good. Is there anything we've missed, or you think it's important to add?

Dr. Angela Hill 21:22

One of the things that we hadn't talked about yet is the role of cannabis, and in light of the fact that we've got 50 states and 50 different versions of laws that allow us to use cannabis either medicinally or recreationally, I do like to caution people, because there is data out there suggesting that in animals there is a resolution of tremors or stiffness and rigidity, but one of the things about using cannabis—doesn't matter why you use it or even the formulation—we do know that there is a preponderance of drug interactions that can also occur from it, and we know that there are side effects that people can sometimes afford or not, and the route of administration is also crucial.

So I have seen and worked with patients who are living with Parkinson's disease who swear that a brownie with cannabis in it has really helped resolve some of their symptoms, but one of the things about ingesting it is that the onset of action sometimes is delayed, and so there's a certain amount by which it should be ingested before it becomes problematic. And when I talk about drug interactions, one of the things about cannabis is that it can slow down the liver's ability to metabolize many, many medications that use our liver for metabolism. Examples: we have a lot of our medications, our statins that we use for high cholesterol, a lot of our blood pressure medications, but we have nearly 100 or more serious, moderate to severe drug interactions that could occur if cannabis is used. But again, that route of administration can impact not only the onset of action, but certainly the duration and the severity of the problems. So we do need to do a little bit more controlled research before individuals go down that pathway of thinking that this is the end-all, be-all.

The other thing that we hadn't really talked about is that there is a role for some of our vitamins, like B6 can be depleted when patients are taking levodopa, but the prescriber should be guiding patients on when and how much they need to take, and again, the pharmacist can kind of help in terms of monitoring some of that. And so people are also tempted to use some of the mushroom therapies, and there's a lot of talk about probiotics and things for memory and mood and nausea and vomiting. Some of these things, if they're available topically, they probably won't be as problematic as being ingested orally. And then last but not least, we just need to make sure we're maintaining a healthy diet—so fruits, vegetables, legumes, whole grains, some of our leaner proteins, and keeping in mind we got to still space them away from our levodopa, but the healthy fats, calcium-rich foods, all of those really kind of help address some of the progression of the disease and other challenges that people have to encounter as the disease progresses.

Dan Keller 24:23

When you mentioned cannabis, I think first of THC as being the active compound, but one derivative of cannabis also is cannabidiol, CBD. What goes on with that? Is that just as problematic or safer, or where does it fall?

Dr. Angela Hill 24:42

The thing with cannabis, when we use it medicinally, particularly, we have to have a certain amount of a ratio between THC and the cannabinoids, is what we call them. We have receptors in the body that are primed to receive, process, metabolize, and capitalize on the effects, and so we get some very beneficial therapeutic effects. There is a lot of convincing research in that regard. In the case of how much do we need and what the true active ingredients are, where we have a lot of question marks is when people are ingesting some of the street-grade products versus getting things from the dispensary and things of that nature, but right now most of the data is a little bit more convincing when we know we have certain ratios that are going to really minimize the euphoric effects versus the cannabinoid effect. And so that's where it has to be almost individualized or personalized care in that regard, because it depends on the medicinal effect you're trying to achieve, so we're still figuring that out for Parkinson's patients, but right now there is some study looking at tremors, like I mentioned, as well as rigidity being two of some of our major symptoms associated with Parkinson's disease that may actually be responding. But yeah, again, modulating that receptor in the brain seems to actually help with the mitigation of those symptoms.

Dan Keller 26:10

Finally, one drug we haven't talked about is alcohol. Do you have anything to say about that?

Dr. Angela Hill 26:16

Yeah, so alcohol is problematic in the sense that, one, it can affect sensorium, mood, sleep, and it does nothing to actually help the patient who's living with Parkinson's, but the worst part, especially for me, is I'm always looking at the effects that alcohol has on the liver, because it is metabolized by the liver, and it's a very weird drug in that the body's only able to eliminate it based on a certain period of time. So no matter how much we drink, the body is still only capable of getting rid of so much at a certain time, which might mean you have effects a little longer than you want, or you have medications that can be affected. If they have a lifetime history of drinking, then naturally the liver is not going to be as healthy as if they are a social drinker or a person that drinks once a month, right? And then it depends on the form of alcohol, but basically alcohol does pose some serious issues as it relates to drug-alcohol interactions, and then, like I said, cognitive functioning or brain functioning in that regard. So we like to say people who are taking medications that are affecting the brain should really avoid and at the least minimize alcohol intake where possible, because again we get concerned about metabolism of the medication.

Dan Keller 27:35

Is there a nutshell message to people about supplements you can give me?

Dr. Angela Hill 27:40

Well, for me, if you want to use these products, because we do understand and respect culture—sometimes culture believes in this and embraces this, and I have absolutely no problem with respecting culture—I just want us to make sure that we're doing it in a manner where we're doing the appropriate research. And there are a lot of online courses, books in the library, certificate programs, newsletters, journals, and things out there, but I really feel that the clinicians are key informants as it relates to the true pros and cons of a particular individual using an herbal or not, because that particular person's health background is going to contribute a great deal to the outcome of using that herbal.

And there are some instances, using the scenario with the fava beans, where everyone can't tolerate it. I do think, however, there are some situations when people can't tolerate some of the prescription drugs that perhaps we can use some of these products, given the health professional is willing to assist in monitoring them. And then, as I said up front, these drugs in no way should be used to substitute our traditional therapies, because this is a chronic disease, a neurological disease that right now does not have a cure, so the herbal products are there to just support some of the symptoms, but we do need to document and monitor accordingly, because they are not benign as it relates to side effects or potential for drug interactions.

Dan Keller 29:12

You've given a lot of information, I'm sure it's going to be useful to a lot of people, and start them thinking in new directions, maybe that they hadn't considered before, so I really appreciate it.

Dr. Angela Hill 29:24

Well, thank you so much for having me and allowing me an opportunity to talk to you today.

Dan Keller 29:36

So the bottom line is to read the product's label, understand what you're taking, what it's supposed to do, potential side effects or interactions it may have, and to monitor it as you would any other drug. Make sure your doctors and pharmacists are aware of all the drugs and supplements you're taking, and rely on them for expert advice, especially when starting something new.

To learn more about nutritional supplements, search our website at parkinson.org for complementary therapies, or visit parkinson.org/pdlibrary to find a webinar titled "Conversations About Complementary Therapies." Dr. Hill also shared a few more resources, which we'll include in the show notes, along with her contact information if you have any follow-up questions.

If you'd like to leave feedback on this episode, or to let us know what other topics you'd like us to cover, visit parkinson.org/feedback. Be sure to subscribe and rate us 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. Till next time, 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.

Dr. Angela Hill 31:13

Thank you.

Dr. Angela M. Hill is a professor, Associate Dean of Clinical Affairs and the Project Director for WE-CARE at the Taneja College of Pharmacy at the University of South Florida. She received her doctorate in pharmacy from Florida A&M University and completed a post-graduate residency in neurology from the Neuroscience Research Foundation, Inc. of Florida. Throughout her career, she has helped patients with neurological and psychiatric disorders through her work in community and hospital pharmacy practice, specialty clinics and community boards. She has provided pharmacy services to patients being screened, treated, or involved in clinical research with Alzheimer’s disease and other dementias for the last 25+ years, and is one of the pioneering pharmacists to be involved in Memory Disorder Clinics in the State of Florida and was acknowledged by the Department of Elder Affairs and the Alzheimer’s Resource Association for her pioneering work.

Dr. Hill is the project manager for WE-CARE where she does work in clinical trial recruitment and health disparities. Dr. Hill has done research and published on a variety of topics related to her specialty areas, which include pharmacogenomic principles in psychiatric and neurological disorders. Her work and training of pharmacists, spans from the United States to other countries like Nigeria, Trinidad, Panama, and most recently Canada.

She is currently practicing at Dr. Tracy’s House, an innovative holistic health primary care practice that serves underrepresented and marginalized populations in Tampa, Florida.

Dr. Hill is the wife of Mr. Thaddeus Hill and their 10-year-old daughter, Sylvia Hill.