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, you’ll learn how you can take control. Our host is Rebecca Gillett, an arthritis patient and occupational therapist, who is joined by others to help you live your Yes.

MUSIC BRIDGE

Rebecca Gillett:

Thanks for joining us on this episode of the Live Yes! With Arthritis podcast. This is one in a series of episodes of four to help you, if you are newly diagnosed with arthritis, navigate all of the overwhelming things that come your way. Today, we're going to be focusing on building your health care team. And joining me today is Dr. Terence Starz.

He is a clinical professor of medicine and occupational therapy in the division of rheumatology and clinical immunology at the University of Pittsburgh's Schools of Medicine and of Health and Rehabilitation Sciences. He treats all types of rheumatic conditions and also teaches occupational therapies, which is really cool to me. I am an occupational therapist. So, Dr. Starz is one of my favorite people, 'cause he talks my language. Thanks for joining us today, Dr. Starz.

Dr. Terence Starz:

What a pleasure it is to be with you, Rebecca, and to be with everybody today. And this is such an important topic. Really three key areas that we’re going to be talking about. Number one is how to have a good rapport with your different members of the health care team. Secondly is how communication could be most effective.

And it's something that, you know, we need to think about. How to have it be most effective. And the last element is your understanding about arthritis. How do you get information about the condition that you have? Because knowledge really is power, and it helps you to be able to most effectively manage your arthritis.

So, I want you all to think about two things. And number one is: How did your arthritis begin? What were the very first symptoms that you experienced? And then secondly: Think about your first experience when you went to see the doctor or other health care professional. Rebecca is going to give us her perspective and we'll use that as kind of a starting point to be able to address common issues. So, Rebecca, how did this begin and what was your first visit like?

Rebecca:

I was 26 years old, had recently purchased my own home and woke up one morning to get ready for work, and my wrist hurt, and I thought, this is weird. I don't remember doing anything to hurt it. I went to my primary care physician, and he said, “Oh, you probably just sprained it and, and somehow doing something and tweaked it. Just take some ibuprofen and buy one of those over-the-counter splints, and call me if it doesn’t help.” So fast forward two weeks. I wake up one day to get ready for work. I can't move my shoulders. I can't raise my arms. My right wrist was more swollen and some of my fingers. It took me probably an hour-and-a-half to get ready for work that day.

And I struggled. And I was in so much pain. My diagnosis came faster than most. I called my mom, of course. When you're upset and crying and in pain, you call your mom. And my mother actually has lupus, and she had been checked for RA when she was diagnosed with lupus and was having similar pain. So, she knew what I was going through. And she told me, “Go back to your doctor right away and have him check your blood work to see if you have rheumatoid arthritis.”

My inflammation markers were really high. My primary care physician first just thought I sprained my wrist. But then when more joints got involved a couple of weeks later, we knew it was something bigger. And so, I was lucky to get a diagnosis sooner than later. And so that primary care physician right away referred me to a rheumatologist. That's how my journey started.

Dr. Starz:

The Cardinal manifestation of really all kinds of arthritis is pain, and pain is really a very distressing symptom. As health care professionals, we think about pain as the warning signal telling us that there is something wrong. And that pain has such an impact upon our activities, on our mood, on our sleep. And so, we have to understand where the pain is coming from and then to figure out how to most effectively deal with it. So, you go to the doc. How did the first visit go?

Rebecca:

The rheumatologist was a very direct and honest person, and he asked a lot of questions, which I appreciated because I had no idea what I was getting into. Right? He went over what some of my options were for treating the pain, especially the immediate pain I was having, where I couldn't move my hands.

I just remember him telling me that, you know, this is something that it takes time to figure out, what exactly is going to work for you. And there are newer treatments out there and more coming on the horizon. And mind you, this is 20 years ago. So, there were really only two at the time that were approved. One of the first things he did was, he did say, “I need to send you to a hand therapist because you need a special splint to get the inflammation down on your wrist, especially when you're sleeping.

That's what that conversation looked like with my doctor. And I wonder, Dr. Starz, when someone is first diagnosed, whether it's from a primary physician and then they come to you, or you're the first to give that diagnosis, what does that conversation look like for you?

Dr. Starz:

You want to have somebody who you feel is helping you to direct. When I meet a new patient, I introduce myself. I ask them what brings them to the office, and they describe briefly about what the problem is. I ask the patients, “Who’s in charge of your care?” And you know, it's interesting that over half the people say, “Doctor, you are.”

But I tell the patients this: that they — the patient — are in charge. And I use the analogy that they are the captain of the ship, and they've got to feel that way. They've got to feel that they are the person who is in charge of what's going on. Now, significant others in their life, their family, their friends, perhaps people at work, those individuals are the first mates. And they're very, very important. But you are in charge. And then I explain to that patient that we, the health care professionals — I, your doctor, occupational and physical therapists and other members of the health care team, we are your navigators. And that's what you need to look at us as. We need to help you navigate. But it is the captain who is actually doing the steering.

And sometimes I explain to people that when they leave the office, they can be irritated, but they cannot be frustrated. And the difference is that, when you are frustrated, you do not feel like you're in control. You've got to feel like you're in control and that we are helping to advise you. And so again, you are the captain, significant others in your life are the first mates and we, your health care professionals, are your navigators to help in that process.

Rebecca:

I just love that analogy.

Dr. Starz:

How do you communicate with your health care professionals? Take a list in?

Rebecca:

Me? Oh, yeah.

Dr. Starz:

Obviously, there are issues that you have as a patient, and we want to hear about them, but it is important to have the information be, you know, listed in a kind of a logical, relatively succinct way. And it's not like I don't like to listen, but I need to know the facts.

Rebecca:

Right.

Dr. Starz:

The facts really provide very important guidelines as to how to manage the arthritis.

PROMO:

Your voice matters. You have the power to make arthritis a higher priority in American health care. Influence state and federal policies, health care laws and funding … and bring arthritis out of the shadows. Go to https://www.arthritis.org/advocate and sign up.

Rebecca:

Dr. Starz, what's important for us as patients to think about making sure that we share with you in order to develop a good treatment plan?

Dr. Starz:

The important thing is to be open about them. Number one is how you're feeling. And I would have to say the most important elements are this: Number one is how much pain you're having, where the pain is located and how the arthritis is affecting your function. Your activities of daily living, you know, how are those impacted? And you need to tell us about which joints are giving you trouble. And then there’s the whole emotional aspect.

Rebecca:

Right.

Dr. Starz:

When you get a medication, whether it be an anti-inflammatory, a non-steroidal one like an ibuprofen or a naproxen, or whether it be a corticosteroid, those are targeting that inflammatory reaction. But for the most part, they really are not disease modifying. What we mean by that are medications that can actually influence the course of the disease by stopping that inflammatory reaction.

And that really can impact enormously the disease process, you know, and that's why we want to get it stopped as quickly as possible. So, how long Rebecca, did you have the condition before you used one of the disease-modifying anti-rheumatic drugs? D-M-A-R-D.

Rebecca:

My first appointment, he put me right away on prednisone first of all, to get the inflammation down, and then…

Dr. Starz:

Yes, you have to stop that inflammation.

Rebecca:

And then he right away put me on one of the traditional DMARDs.

Dr. Starz:

Something that I always emphasize to patients with these medicines is you have to weigh three factors. You have to weigh the good effects of the medicine versus the side effects of the medicine versus what's going to happen if nothing's done at all.

Rebecca Gillett:

Right. The research shows early aggressive treatment, right?

Dr. Starz:

There's a term we use, and I think patients need to know this term. And the term is called treat to target. Our target is to stop that inflammation. Education is so important, and it’s important to know that rheumatoid arthritis is a disease that primarily affects the synovium. And then there are consequences of that persistent synovial inflammation.

Rebecca:

Yeah. So, when somebody is diagnosed with osteoarthritis though, too, Dr. Starz, do we use that treat to target model as well?

Dr. Starz:

We do. And, you know, osteoarthritis has… That's the most common form of arthritis really. But osteoarthritis is not an inflammatory arthritis like rheumatoid arthritis, as there could be a little irritation in the joint associated with the changes. But osteoarthritis is primarily a disease of cartilage and of bone.

You would think that we would know the answer to this, and certainly we know that there are factors that are involved in the pathogenesis or what occurs in osteoarthritis. Those being like trauma, genetics, they do play a significant role in the development of osteoarthritis. But they're not necessarily… Just because someone's family member has osteoarthritis doesn’t necessarily mean you’re going to have it. The role of trauma is important. But like with rheumatoid arthritis, the early diagnosis is very important, and then making proper interventions.

Over three-quarters of the people who come to see the doc have been on the internet.

Rebecca:

Yeah.

Dr. Starz:

You have to be very careful. How do you determine that the information is true? That's a real challenge.

Rebecca:

What advice do you give to people to really understand all of these terms and all of the aspects that they have to navigate, to having a new diagnosis of arthritis?

Dr. Starz:

Well, you need to find a reliable source of information. And I would really stress to people that I believe that the Arthritis Foundation is a very clear source that has great validity to it. And I would really suggest going on. And it's pretty succinct.

Another question that people frequently, not frequently, they absolutely have is: What about the cost?

Rebecca:

Well, the cost of medications for rheumatoid arthritis are very, very expensive and unaffordable for a lot of people, especially if you don't have insurance. So, that's one thing I wanted to ask you about. Because I think, aside from coming to your doctor, talking about your symptoms and how you've been doing on a medication, I think not being afraid to ask your doctor about costs, what advice do you have for newly diagnosed patients?

Dr. Starz:

First of all, I tell them it's a very important issue. The number of the disease-modifying biologic agents, you know, cost half as much in Europe as they do in the United States.

Rebecca:

Yeah.

Dr. Starz:

We have to think about the systems involved and to try and look at it most effectively, because cost really is so important. The dilemma is, for example, that Medicare cannot negotiate prices for the help with these drugs. The VA can, and they get certainly significantly lower prices for a number of medications. So, I think the important thing is to discuss it with your doctor.

PROMO:

The Arthritis Foundation is always looking for new ways to inform you about the things you want to know more about. Check out our webinars — in real time or on demand. Visit https://www.arthritis.org/events/webinars to learn more.

Rebecca:

Do you have any tips that you share with patients to be able to really track their symptoms and share it well with their doctor?

Dr. Starz:

The Arthritis Foundation has a wonderful tracking system, which is quite useful. Not infrequently, one has to make changes in terms of a treatment protocol, you know, based on the clinical response, based on pain, based on function, based on what the joints look like on an examination, and then other factors as well. The earlier you start treating, the better the outcome. We used to have a fair number of people in wheelchairs.

Rebecca:

Right.

Dr. Starz:

And that just doesn't happen for the most part.

Rebecca:

It's changed a lot, even with rheumatoid arthritis. A key thing that you would see is deformities in the hands. And nowadays it's rare to see that.

What advice do you have for patients to help bridge that gap, to develop a good relationship with their health care providers so that they can better advocate for themselves and feel like they can really be open and honest with them?

Dr. Starz:

Spend time thinking about what your problems are. I really like it written down. And it helps make the visit much more effective.

Rebecca:

Right. So, you don't leave feeling like your questions weren't answered. That's why the list is important.

Dr. Starz:

Right.

Rebecca:

What are some simple, everyday things that people can do to help improve their quality of life when they're trying to find a treatment plan that works?

Dr. Starz:

I'm not a Pollyanna about things, but I'm a one-day-at-a-time person. “One day at a time, I'm going to feel like I have control over what goes on. I'm going to try to not overstress my joints, using pain as a guide. I'm going to communicate as effectively as I can. And I'm going to try to make sure that the first mates in my life, you know, feel like that they're involved in the whole process.” I'd start with the Arthritis Foundation. It gives you a baseline amount of information. It really helps the patients understand what the problems are and what to do about it.

Rebecca:

What other navigators are on our health care team that we need to have to help us manage our journey with arthritis?

Dr. Starz:

You know, I frequently have physical and occupational therapists involved. Nursing can be quite helpful in terms of explaining issues about medications. The effect on our emotional health, you know, sometimes having professionals in that regard can be very useful, to get those feelings out, to help deal with the frustrations, to help deal with any anger that's occurring. And to help other family members or other significant people in your life to deal and to help you deal with arthritis.

Rebecca:

How do I make sure that everybody on my health care team is on the same page and they know what's happening? And who is the primary person that I should look to when there's an issue related to my arthritis? Is it my primary care or is it my rheumatologist?

Dr. Starz:

I think the two of them together. I think that's important.

PROMO:

Want to connect with others who understand what you’re going through? The Arthritis Foundation’s Live Yes! Online Community features forums on specific topics where you can chat with those who know what it’s like, including health care experts. Or check out our local virtual Connect Groups for a more personal touch. Sign up at https://www.arthritis.org/liveyes .

Rebecca:

We had a couple of questions and comments from listeners about being newly diagnosed and building their health care teams. So, one person commented that they wish they had known all of the correct questions to ask the rheumatologist. I would say there is no question that you shouldn't ask, right? If you have a lot of questions, ask them, but just prioritize them, right?

Dr. Starz:

Right.

Rebecca:

So, one other question. I think a lot of people with arthritis are initially diagnosed by a primary care physician, right? Somebody commented that they should have pushed for a rheumatologist from the beginning. What are your thoughts on that? How soon should we be seeing a rheumatologist?

Dr. Starz:

Rheumatoid arthritis is a complex problem. And you need to have somebody who's taking care of it, who has expertise about the different treatments, about proper diagnosis, and they need to have the experience, 'cause that really does make a lot of difference. Many primary care doctors choose to work in a partnership with a rheumatologist. The nature of the field is such that having the two of them work together can be extraordinarily beneficial.

Rebecca:

And what about somebody, if they have osteoarthritis or gout or one of the other inflammatory types of arthritis, at what point should they be asking about going to a rheumatologist?

Dr. Starz:

Well, the same is true. Manage the condition as early as possible.

Rebecca:

Awesome. So, what would be your top three takeaways for people who are newly diagnosed with any form of arthritis as it relates to building a good arthritis health care team and accessing treatments and medications they need?

Dr. Starz:

We've discussed this importance of feeling like you're in charge, like you're the captain. That you can empower others in your life to be the helpers in terms of this. Number two is you've got to effectively communicate with them, give them the information and also ask questions that are of concern to you. And then lastly, it is essential, as a patient, to understand the disease. That is very helpful knowing that, and then taking that information into why decisions are being made about the different management activities.

Rebecca:

Great, thank you so much. Your analogy to… patients understand that they play an active role in their care as the captain of their ship, and looking to our health care providers as the navigators, and our family and friends and support as our first mates… that is one of my favorite analogies. We have a lot of resources at the Arthritis Foundation. And a great way to track your symptoms — especially when you're newly diagnosed — is by using the Vim app tool that we have, that helps you track how you're doing. So, thank you so much for joining us, Dr. Starz. We appreciate it.

Dr. Starz:

It's been my pleasure. Thank you.

PODCAST CLOSE:

Thank you to Amgen, our sponsor of this episode, Newly Diagnosed: Building Your Health Care Team, which is part of a 4-part Newly Diagnosed With Arthritis series. The Live Yes! With Arthritis podcast is independently produced by the Arthritis Foundation, 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!