Podcast: Drug Safety: What You Need to Know

Full Transcript:
Released 7/25/2023

PODCAST OPEN:            
You’re listening to the Live Yes! With Arthritis podcast, created by the Arthritis Foundation to help people with arthritis — and the people who love them — live their best lives. If you’re dealing with chronic pain, this podcast is for you. You may have arthritis, but it doesn’t have you. Here, learn how you can take control of arthritis with tips and ideas from our hosts and guest experts. 

MUSIC BRIDGE  
 
Stacy Courtnay: 
Welcome to the Live Yes! With Arthritis Podcast. My name is Stacy Courtnay, and I'm excited to be your guest host today. I've been a longtime volunteer of the Arthritis Foundation. I believe this is my second or third podcast, so I'm excited to be back, this time as a guest host. I've had rheumatoid arthritis for about 22 years. I'm currently the board chair for Georgia. I'm on the Patient Leadership Council, and I just love the Foundation and all the work that we're doing. 

The topic for today is arthritis medication safety and adherence. So, medications can help people with inflammatory arthritis live a very full life with limited pain. But for many, many reasons, people may not take their prescribed medications as they are prescribed. 

In this episode, we are going to be talking to Dr. Elizabeth Salt. She is a rheumatology nurse practitioner who works firsthand with patients, and she's an associate professor at the University of Kentucky School of Nursing. And her research focuses in part on medication adherence in rheumatoid arthritis patients. So, I'm excited to speak with Dr. Salt today, because this is a subject that's very near and dear to my heart. Because, although these medications are wonderful, sometimes they can be very scary. With that, I'm going to let her introduce herself. 

Elizabeth Salt, PhD, APRN: 
Yes. Thank you so much for having me. I really look forward to discussing the topic. It's something, obviously, I've spent a long time researching and also involved with in patient care. 

I'm a nurse practitioner and have worked as, in rheumatology specifically, since 2005. And then after working for about a year as a nurse practitioner, I started to ask questions, and realized that, to answer those questions, I was going to need a PhD. So, that just led to about 18 years of research in medication-taking behaviors, specifically looking at the quality of patient-provider communication, the quality of patient-provider relationships, intolerance to medications and belief systems about medications. Optimizing medications. 

Those are sort of the topics that I've spent the majority of my career looking at, specifically in rheumatoid arthritis. But I have done some work in some other areas of chronic pain conditions. 

Stacy Courtnay: 
When you see patients, like what are their top concerns about these medications? I know how I felt. I was terrified. Because you read the small print or the fine print, it's very scary. So, what do you tell patients? 

Elizabeth Salt, PhD, APRN: 
I think in everybody's process and everybody's journey… with their condition is very different, as far as even coming to terms with, that this is a chronic condition. That in and of itself, I think, is a journey that somebody has to sort of work their emotions through. And then you can even start to look at, "OK, this is what I'm looking at. This is what I need to try to address in my life." 

So, patients really, once they get to the point of, "OK, I'm going to be looking at taking medications." And it might be for a long period of time. Then you can start to work with patients on, “OK, where are we at with this? This is what my recommendation might be as far as your treatment plan goes. These are the medications that I would recommend. These are the guidelines and the first-line treatment approaches. These are the side effects of those medications.” 

I usually try to provide patients with additional sources of information from reputable organizations or groups, for them to be able to kind of corroborate the information that I have. For a lot of people, that makes people feel more secure that the information I'm giving them is accurate. And then meeting them with, "OK, where are you at with this? What are your worries? What are your thoughts? Have you heard anything else?" 

And what we've learned through a lot of our research is that people get information not only from the sources that we're giving them, for their provider for themselves, but from communication with their peers: with the pharmacist, with somebody else that has taken this medication, maybe for a different condition. And that impacts that decision-making and those medication-taking behaviors. 

And so, sometimes as a provider, it's working through, “OK, you have a worry, and it's coming from this source. Let's talk through that.” That's how I sort of approach it as a provider, to try to meet people where they're at, and then work through the process together. 

Stacy Courtnay: 
I think my big thing when I started on biologics is… They tell you if you have an inflammatory type of arthritis, you have an increased risk of lymphoma. But then, you take these biologics, they could also increase your risk of lymphoma. So, I've had many discussions with my doctor, and his feedback has been, you know, "If you have high levels of inflammation in your body, you are at more risk for certain cancers, so you have to combat that with this biologic." 

Elizabeth Salt, PhD, APRN: 
Right. There's always been the question of: Is it the severity of the disease or is it a function of the medication? And that's always been an ongoing question with some of the side effects that we've reported with some of the medications for rheumatoid arthritis. How often do these things really occur? What can we do to even surveil and evaluate potential risk? 

Stacy Courtnay: 
Yeah. And let's touch a little bit on over-the-counter medications. I know some people are adamant about not taking a biologic, and they think that they can treat it with Tylenol or ibuprofen. So, when somebody says to you, "No, I'm going to treat it with Tylenol," how do you respond to that? 

Elizabeth Salt, PhD, APRN: 
I think because they are over the counter, there is some level of security that these medications are safe, but they are only safe as indicated. And that's with consideration of your other health conditions. So, if you have liver disease or kidney disease, things like that, then those risks have to be recognized. And also, whether any of the medications you have have Tylenol as part, as a component, of that medication. 

But definitely, they should be taken as indicated, and probably in discussion with your health care provider. Of course, with rheumatoid arthritis, we know that these are inflammatory autoimmune diseases, and that these medications aren't really addressing the inflammation that we see with these conditions. There's not an over-the-counter medication that's going to treat rheumatoid arthritis necessarily, treat the fundamental, pathophysiologic process that's going on. 

I think that's another point to be taken. The hope is, of course, that we have low to no disease activity, and that will prevent the potential damage to joints that occurs whenever we don't treat those conditions. And, of course, over-the-counter medications aren't indicated in that situation, to prevent joint destruction and to achieve low to no disease activity. 

Stacy Courtnay: 
Yeah, and I think that's an important point you're bringing up, too. A lot of people, when they're first diagnosed, they don't understand the difference between osteo and rheumatoid, and so they think you can just treat it with an over-the-counter. But they're not stopping the disease progression. So, yeah. I think that's something the Foundation does really well, too, is just educate the general population about the differences in all these arthritis. It's not just the old person osteo. 

Elizabeth Salt, PhD, APRN: 
Right. 

Stacy Courtnay: 
So, you have to stop the progression of the disease. 

Elizabeth Salt, PhD, APRN: 
And it is complicated to kind of understand. And it's a lot to take in. So, I think you have to communicate that with your health care provider. And be really honest, too, about, you know, what your worries and your concerns are, and barriers that you might have. I mean financial and otherwise. And have that health care provider help you, so that you have access to some medications that you need and things like that. 

PROMO: 
Biologics and biosimilars. What’s the difference? And what does it mean for you? It can be confusing. That’s why the Arthritis Foundation provides guidance on what to consider in your own situation. Get the facts from the arthritis community’s most-trusted source of information. Visit https://www.arthritis.org/treatments/about-biosimilars. 

Stacy Courtnay:  
There's a number of reasons that people might not take their medications as prescribed, such as insurance obstacles, the expense of the drug, not understanding what the drugs do, and then denying that their arthritis is serious enough to need medical treatment. And then other people might do nontraditional therapies, or homeopathic-type remedies. They think they can cure themselves. So, let's talk a little bit about those. The big one is insurance. What if your insurance does not cover this medication that your provider is prescribing to you? 

Elizabeth Salt, PhD, APRN: 
Well, there are various programs that help with payment assistance, copayment assistance and things like that. Usually, most offices now have a person that's designated solely for that purpose, of trying to help people get the medications and afford the medications. 

So, I think it's more, you know, communicating with your health care provider that, " I can't afford this medication or the copayment." And then work with... The provider can usually work with whoever in that office helps to facilitate patients getting access to the medications that they need. That's just part of being honest with the provider in that office, trying to provide all the resources that they're aware of to help you be able to afford the medications. 

Stacy Courtnay: 
Yeah, and a lot of the drugs have the copay assistance programs now, which are very helpful. 

Elizabeth Salt, PhD, APRN: 
Right. 

Stacy Courtnay: 
And this is a little bit... This is a sidebar to what you were mentioning, too: step therapy reform, and patients that are forced to maybe start with a drug, a less expensive drug, and that's something that a lot of the states have passed, step therapy reform. But it's still a challenge for some people, especially in like my current situation. My husband is changing jobs, and I'm terrified I'm going to have to go back and start from square one again. Do you encounter that a lot in your practice: step therapy challenges with the insurance companies? 

Elizabeth Salt, PhD, APRN: 
Often, the provider has to do a peer-to-peer review, where you have to talk with somebody, another provider, on the phone. Often, these people might have a limited background in rheumatology, and they certainly, obviously, have a very limited understanding of this specific patient that you would like to use a different medication for, and the justification for a different medication choice. But typically, after you have those conversations, and honestly, I've found that if you use the evidence to support your decision, it works fairly well with the insurance company being willing to pay for the medication that you are suggesting would be the best option for that particular patient. 

PROMO: 
Whenever you need help, the Arthritis Foundation’s Helpline is here for you. Whether it’s about insurance coverage, a provider you need help from or something else, get in touch with us by phone toll-free at 800-283-7800. Or send us a message at https://www.arthritis.org/helpline. 

Stacy Courtnay: 
Let's talk about patients who want to try everything else except traditional medications. So, I will share a little bit about my story. When I was diagnosed in 2005, it was right when I had gotten married, and, like you had said before, the biologics were just coming out. And my options were, if, well, we wanted to have children... We weren't sure we wanted to have children, but the doctor said, "OK, you can stay on prednisone right now. But we're not really sure if these biologics are safe to start before you want to have a child." So, I stayed on prednisone for about four years and then had my son. I guess I started biologics in 2008, and so I failed about four or five of them. 

In the middle of all that, I said, "Nothing's working. I'm in so much pain. I'm miserable. I've got this newborn baby. I'm just going to quit everything, so I'm going to try the homeopathic route." So, I did, of course, you know, gluten-free diet, raw diet. I did something crazy called oil-pulling, where I read if you just gargle sesame oil, it pulls the toxins from your body. I drank food-grade peroxide. You couldn't touch it, but you could drink it, because that was going to rid me of the toxins. 

I mean, I did everything. I did chelation, and then I found myself literally in bed, unable to walk, you know? And I called my doctor in tears. I'm like, "OK, I give up." And I did a lot of joint damage during that time, thinking that I could cure myself. I think that there are some alternative therapies that you can partner with traditional medications, but the people that think you can cure this with just your diet, or collagen, or whatever. Do you have patients that just kind of throw their hands up sometimes when nothing's working? 

Elizabeth Salt, PhD, APRN: 
Yes, yes. I mean, there are definitely... I mean, and understandably, you know? We don't have this perfect scenario where every time we pick the right medication for this particular person. Hopefully in the future, we'll get to that point. But it is, to some degree, some trial and error, and that's frustrating. You're not feeling well, and you've got things that you want to do and need to do, and people to take care of. Everyone likes to feel in control of their situation. And so, definitely it’s understandable to think that maybe — whether it be homeopathic or dietary, whatever those different things might be — an effective or reasonable option. 

There isn't a lot of evidence to support dietary interventions, to support changes in disease activity for rheumatoid arthritis patients. But we obviously do have a sufficient amount of evidence on the medications that are in the guidelines for recommendation for the treatment and disease management of rheumatoid arthritis. From my research, definitely patients get to that point. It usually is that point where they are nonfunctional. 

There's something in their life that they need to be able to do, that they can't do, and they recognize, "I've got to get help." And that's when they're really willing to consider the different treatment options that are available. And that's when they start to consider the risk versus the benefits of the medications. 

Stacy Courtnay: 
Yeah, it was quite a journey. And once I finally realized that my quality of life was... I mean, it was life-changing to find a biologic that finally worked. And I think that is the goal, right? Is to find a treatment that works the first time and not have to go through so many. Because that is frustrating, when you're failing drug after drug after drug. And then you hear people say, "Well, have you tried this?" You know, "My grandmother was cured with something," or, "My friend was cured." And so you're just like... Whatever you can do to find pain relief. 

Elizabeth Salt, PhD, APRN: 
Right, and I think that that's a really important point, is that those conversations, I think, with friends and family members, sometimes, that... And when people have had bad experiences with the health care system, that really influences some of these decisions. I've had a number of situations with patients, where they would disclose, "Well, this is what happened to me…" And it wasn't a situation that a patient should have to go through. 

But it was helpful for me to know that that's the perspective from which they're coming. I needed to provide additional support to build that relationship with that person, for them to be able to understand that I heard them, and try to figure out a way to move forward to build a trusting relationship. Because that's what's necessary, really, for somebody trying to get to a place where they can do the things they want to do, meet their goals. 

And I think vocalizing those goals is really important as well. You know, what is it that you want to do? Do you want to be able to do this sort of exercise, play tennis, get on the ground to play with your grandchildren? What are your sort of functional goals? And how close are we to meeting those? So, yeah. 

Stacy Courtnay: 
And I think that's a good point: Everybody's goals are different. Ten years ago, my goal was to be able to get on the floor and play with my son, you know? And just roll around on the floor when he was a baby. Because that was a... (laughs) Back then, I mean, that was like, that was really hard to do, to get on, get up and down. And now my goal is: I'd like to exercise five to six days a week, because I can, because I'm doing so well. So, I think it's important that people not compare themselves to others, because we all are at different phases of our journey. 

PROMO: 
Get tips to help you take control of arthritis and put your mind at ease with the Arthritis Foundation’s free e-books. They’re packed with trusted information from the experts on all kinds of topics. See the full menu at https://www.arthritis.org/liveyes/expert-advice. 

Stacy Courtnay: 
We put something on our social media. "What is one reason that you've skipped your medication?" One person said, "Along with all the normal ones, cost, side effects, insurance issues, denials, pharmacy, I've also skipped them for reasons such as I forgot, I didn't feel like taking it, I wanted to drink alcohol instead. And then when I was younger, what if I'm fine and the medications are making me sick, and the doctors are trying to control me?" So, there's a lot in that one comment right there. Let's talk about the alcohol piece of it, because I do know that is a big deal for patients that are on methotrexate especially. 

Elizabeth Salt, PhD, APRN: 
Right. And so, I think that this is a really important topic to have a really... Again, going back to the patient-provider communication, and being really open and honest about your other lifestyle habits. Obviously, you know, methotrexate can cause... We would have to monitor for potential hepatotoxicity or problems with your liver. If you drink alcohol with the medication, that's greatly increased. I think really being honest about your alcohol intake. 
 
I have had patients that have... It's just a part of their life. It's something that they like to do socially on a pretty regular basis, and/or, you know, it's maybe even a problem for them to some degree. That's not going to be the best choice medication for them. So, it's really important that they ask about use of substances that, you know, everybody's really honest about. And other health conditions. Certainly like hepatitis C and things like that, other drug use. Just being honest with people that are the providers is critical for everybody to make good decisions about the best treatment options for that patient. 

Stacy Courtnay: 
Right, right. Another comment: "I have a hard time giving myself the shot." And I think that's something that you definitely need to discuss with your provider. Because if that is an issue, maybe the infusion is a better option for you, if you're scared to give yourself the injector at home. 

Elizabeth Salt, PhD, APRN: 
Right. And, you know, sometimes we have had patients that have come to the clinic to get their shot. Usually people work through, or they have somebody else give it to them. 

I think giving yourself a little bit of grace to say, "You know, this is a justifiably sort of uncomfortable situation here." Most patients have worked through. 

But there are, of course, options as far as the frequency that you give yourself a self-injection. That's something, a consideration: going to the health care provider to get the injection might be another option for some people. 

Stacy Courtnay: 
I actually found comfort in going to the rheumatologist and the infusion suite to get my infusion. I had the option of doing my current medication at home, and I just feel better doing it at the office. So yeah, there are options. But it just lessened my anxiety to be at the doctor's office when I was getting it. 

Elizabeth Salt, PhD, APRN: 
There probably is something therapeutic about being around, you know, being in this environment where you meet and talk to other people. 

Stacy Courtnay: 
One of my favorite stories: When I first started with my infusions, there was this older woman in front of me. She was probably in her 70s. And she said, “You are so lucky to live in a time where you have biologics.” Because," she said, her hands are crippled, and she had so much joint deterioration. And she goes, “You're way ahead of the game, 30-something years old. You're stopping the progression, and you're so lucky to live in this time where you have these medications." 

And they are scary, but they are changing lives. And hopefully… I think the statistic now is one in five patients do not respond to any biologic, or any type of medication. But we're fighting for more. We're finding better treatments every single day, so there's hope for everybody. 

Elizabeth Salt, PhD, APRN: 
There are so many ways that we've made improvements, and we continue to make improvements. And that's why I feel like that the research is so important. What the Arthritis Foundation is doing is so important, so that we can continue to make progress and learn. And I think that having the Arthritis Foundation, with so much patient involvement, really allows us to have more patient-perceived approaches to the way that we provide care, so that it's not patient-centered just by title alone. But it actually is informed by patients. And that's really where a lot of my research has focused, and a lot of the work that we're doing. 

Stacy Courtnay: 
And I like to hear that from you, because you talk about the patient goals. And people say, "We are the experts on our own condition, our own health." And a lot of doctors, it's more about their goals sometimes. It's not like: What are the patient goals? 

Elizabeth Salt, PhD, APRN:  
We worked on a project a number of years ago, working on patient-provider communication and a measurement of the patient perception. Because what we found was that all the measures were really coming from the provider's perspective. And a lot of that, honestly, was around billing. 

Their quality of relationship was much more aligned with what we would consider for a healthy relationship, people laughing, people knowing about each other, you know? 

Knowing about the health care provider, and maybe their family, and vice versa, and laughing about things. Because these relationships… The patients that you have are your patients. You've seen their children grow up. You've seen them go through retirements, and go on vacations, and all those really hard, sometimes, and also very happy life events. 

Stacy Courtnay:  
I'm going to address one last comment on social media. One reason that this person does not take their medication: International travel requires refrigeration, the live vaccines. So that is a good point. Some of the medications have to be refrigerated. So, how do you handle that with travel? 

Elizabeth Salt, PhD, APRN: 
Generally, as far as vaccinations go, the best option is to get the live vaccinations prior to starting the biologics, from my experience. But sometimes, you know, depending on where you're traveling. Obviously, there's going to be different immunizations, so that can get a little bit sticky. 

Stacy Courtnay: 
Yeah. This has been a wonderful conversation. Like I said, I love how involved you are with making sure that your patients are happy. So, what are your top three takeaways from this conversation that you'd like to provide our listeners? 

Elizabeth Salt, PhD, APRN: 
I think my top three takeaways would just be: trying to establish that really strong relationship, with open communication, with your health care provider. Trying to establish that partnership with your provider. And then, too, just being really honest about your worries and your concerns, and where you are with your journey. And that allows for that communication to take place where your concerns are addressed, and that you feel comfortable with moving forward with a treatment plan. 

I really feel strongly about making sure that you're using or accessing reputable sources of information whenever you are making these decisions. There are a host of really great resources, including the Arthritis Foundation. But there's a lot. We all know the internet has experts coming from all directions. And so, I definitely urge people to be a good consumer of information, and sort of consider that whenever they're weighing the value of that information. 
 
If you heard something, and you're worried about it, then communicating with your health care provider. Sometimes, they can just say, “Oh, yeah. I've heard of that blog.” “Or I've had other patients that have had that concern or worry. Let's talk about that a little bit further, and I can provide you with a little bit more background on that particular situation.” 

Stacy Courtnay: 
My top three are very similar to yours. I would say number one is, especially for the newly diagnosed: just helping them understand that this is not osteoarthritis. It is rheumatoid or other inflammatory type of arthritis, and you have to stop the progression of the disease. And though there are alternative therapies that might be helpful, it's recommended that you do try a disease-modifying drug, because it can be life-changing. And though it comes with some risks, the reward and the quality of life definitely exceeds that. 

I'd say number two: Be open and honest with your doctor, like you said many times. And just sharing your goals, sharing your fears, your goals. I've had the same rheumatologist for about 20 years now, and he has become like my family, you know? And he knows what my long-term goals are, and they do change, depending on how I'm feeling, each time I visit him. But definitely, open and honest. 

And then third: I would just say the information that you receive on the internet, or from other sources, validate that. Because you can go down a rabbit hole really quickly and get some false information. But also, I would encourage people to join one of the Connect Groups with the Arthritis Foundation. Because that's what we're here for: We share our fears and our concerns, and we talk about all of these different things: why you're scared to take your medications, or what your choices are at any given time. 

I do encourage people to get involved with us. When you have people that are in the same situation as you, it really does help on your journey. So, Dr. Salt, I want to thank you for your time. You were wonderful. I really enjoyed this conversation. Thank you to all of our listeners. I hope you enjoyed this Live Yes! With Arthritis Foundation podcast. And we hope that you'll join us on our next one. Thank you so much. 

Elizabeth Salt, PhD, APRN: 
Thank you. 

PODCAST CLOSE: 
As part of their support of the Arthritis Foundation, this episode was brought to you in part by AbbVie, Bristol Myers Squibb, Janssen and Kenvue. The Live Yes! With Arthritis podcast is independently produced by the Arthritis Foundation. This podcast aims to help people living with arthritis and chronic pain live their best life. People like you. For a transcript and show notes, go to https://www.arthritis.org/liveyes/podcast. Subscribe and rate us wherever you get your podcasts. And stay in touch!