Sponsored: Living with PsA: Julie G and Dr. Bakewell, Part 1
I recently had the honor of interviewing Julie Greenwood, a contributor to Psoriatic-Arthritis.com who lives with PsA, and Dr. Catherine Bakewell, a rheumatologist. While PsA is a complex, chronic inflammatory disease that attacks a person’s skin and joints and can cause other symptoms like fatigue, experiencing persistent, day-to-day PsA-related symptoms should not be considered ‘normal’ and likely means that the disease is not managed well.
This episode is sponsored by AbbVie, and Dr. Bakewell has been compensated by AbbVie for her participation in the podcast. Julie's story is based on her experience with PsA and is not intended to be representative of others' experiences. Listen to the podcast interview or read the transcript below to hear more about the importance of the partnership between the patient and rheumatologist in establishing and continuing to track against treatment goals aimed at assessing many different aspects of PsA, such as minimal disease activity.
Emily Downward: Welcome to Living With, a podcast about the stories and people behind Health Union. Health Union integrates the power of human connection and technology, uniting people in the shared experiences of life with chronic health conditions. I'm Emily Downward.
Psoriatic arthritis or PsA is a chronic inflammatory disease that attacks your joints on the inside and your skin on the outside. Symptoms include skin symptoms like red, scaly skin patches known as plaque psoriasis, and joint symptoms like joint pain and swelling. About one in three people with psoriasis may develop PsA, but psoriatic arthritis can impact more than just skin and joints. Too much inflammation can be associated with other symptoms like fatigue. This podcast is sponsored by AbbVie. In the first episode of this two-part podcast series, we're talking to Julie, a contributor to psoriatic-arthritis.com and who lives with psoriatic arthritis, and Dr. Catherine Bakewell, a rheumatologist. Welcome, Julie and Dr. Bakewell. So, Julie, when did you first learn you had psoriatic arthritis? Can you talk a little bit about how you were diagnosed?
Julie: Yeah, so I was 23 years old and I had just gotten a perm in my hair and it had burned my scalp. People kept saying, shortly after that, as it was healing, people would say, "Oh, you've got breadcrumbs on your shoulders." And they'd wipe them off, but that kept, it just continued. And I thought, "I don't know what's going on with this." Shortly after that, probably two weeks after that I had a pain in my right finger and it felt just like the stabbing pain right in the joint.
So those two things were kind of progressing together. The bread crumbs in my scalp kept going. This burn in my scalp rather than getting better, it was spreading. And then this pain in my finger just continued. At that time I worked for a chiropractor who had just gone to a seminar and learned about psoriatic arthritis. And he knew that I had an appointment with a dermatologist. I was one of those lucky people who in the early '90s I was diagnosed with psoriatic arthritis and psoriasis at the same time. And it was not a long process. I walked in and was immediately diagnosed, because these things were happening so rapidly at the same time.
Emily Downward: That's amazing. What was your finger like? Did you have swelling or pain? Just the pain?
Julie: No, I had severe swelling and the pain actually felt a little bit like I was being stabbed with an ice pick. And I know that that's pretty graphic, but it did just have that feeling of being stabbed with an ice pick. It was absolutely agonizing and there was nothing that I could do to prevent or even stop that pain once it happened. And then within just a few weeks, one of my fingers on my left hand started doing the same thing. And it was not long after that that my low back started causing so much pain. I was having so much pain in my low back that I couldn't stand up straight. I couldn't step off and on a curb unassisted. I remember one day pushing a shopping cart through a grocery store, and I was 23 years old, could not stand up straight. And someone stopped me in the grocery store and said, "What is going on with you?" And I said, "I've been diagnosed with psoriatic arthritis." And she said, "Arthritis? You're too young to have arthritis." And you know, all I could do is cry.
Emily Downward: Oh.
Julie: It was just, it was devastating.
Emily Downward: Yeah. And it sounds so incredibly painful.
Julie: Those were hard days.
Emily Downward: Did you also experience fatigue?
Julie: I don't know if I experienced what I remember as fatigue in those early days. I think I was so overwhelmed with everything that was going on that if I did, I wasn't paying attention to it. And I really didn't know what I should be looking for. So, I would not have recognized that as a symptom of what was happening, because I did not have access to really any information about what was happening to me. It was the early '90s, I think I mentioned that, and I just didn't have any information what was going on. So, even if I was experiencing that fatigue, I would not have put those things together.
Emily Downward: Yeah, how do you explain psoriatic arthritis to someone who doesn't have it?
Julie: It depends on who I'm talking to. I usually start out by saying, "I have psoriasis, and a certain number of people who have psoriasis also have a type of arthritis that goes along with that. This is not your grandmother's arthritis." And that sometimes does the trick. That typically prevents people from saying things like, "Oh, I've got a touch of arthritis too."
Emily Downward: Do you describe to them what it feels like? Or do people ask you, like your friends and family ask you what it feels like?
Julie: I don't recall having people ask me what it feels like, but I often tell people I'm close to, they know what it feels like. Those people who are the closest to me get to see it up close and personal on a regular basis. I have a lot of difficulties with things like stairs. And in the last few years I've had more mobility issues. And just last summer my sisters and I went to Costa Rica and there were things that I was determined to do, even though it was very difficult for me. And it was very difficult for my sisters to have me there. So there was a waterfall that we wanted to go to, and I needed a lot of assistance and they were incredible. The way that they helped me get to this waterfall was just so amazing. Having them hold my hands, having them at my sides, knowing that they were not going to let anything happen to me. And my sister, Lisa said, "I had no idea what your daily life was like."
Emily Downward: Hmm, wow. It's wonderful to have that support. And it sounds like it was a really special moment with you and your sisters?
Julie: Yeah, it was.
Emily Downward: How do your skin and joint symptoms, as well as other symptoms of psoriatic arthritis affect your daily life, like your work or your social life?
Julie: So, I had to stop working in October of 2019, because the pain just was, the pain of my psoriatic arthritis was just too much for me to continue working. I had reached a point where going in and out of the office building was too hard for me, sitting in my chair at work was impossible. There was one meeting that I was in and with a colleague of mine. And I said, "You're going to have to come to my office because that's just how we have to do this meeting." So she came into my office and I said, "This sounds a little unusual, but let's lie down on the floor and put our feet up on the wall." And because that was a position that I knew that I could be in that wouldn't cause more pain. And she said, "Whatever you need." And there we were, taking notes with our feet up on the wall, laying on the floor. And I thought, "Oh, if management could see us now."
Emily Downward: And do your symptoms hold you back in your social life, or do you have to adapt in any way?
Julie: I do have to adapt. There are, I have to cancel a lot of plans at the last minute. There are many times that I worry that I will stop getting those invitations. And I think I probably have stopped getting a lot of invitations that I might have otherwise gotten. But my good friends know that I'm probably 50/50 on whether or not I make it to something that we plan to do. Or I'll just say, "That does not sound like something that I can do." There are lots of things. I used to really enjoy kayaking. That was an activity that I really loved, but my back just is not able to do that anymore. That is not for me. And so when they go kayaking, I can't join that. I can't join a hike because I might be able to walk that far. But if we get 20 minutes into a 30 minute hike or a 45 minute hike, then how do I get back if I can't go on?
Emily Downward: Yeah.
Julie: So, that's not something that I can do.
Emily Downward: So Dr. Bakewell, turning to you now, can you tell us what's happening inside the body of a person who has psoriatic arthritis and help us understand why there are skin symptoms and joint symptoms?
Dr. Bakewell: Absolutely. The first thing to understand is that psoriatic arthritis falls into this class of autoimmune or auto inflammatory disease in which our own immune system, which is of course designed to protect us from bacteria, viruses, or even some of our own cells that have turned precancerous, for example, if the signals get crossed, if you will, the immune system can start to attack the self. And that is what happens in psoriatic arthritis. So both the skin and the joints are examples of otherwise healthy tissues that can become inflamed and damaged by our body's own immune system and conditions like psoriatic arthritis.
It's estimated that about 85% of people with psoriatic arthritis actually start out with the skin disease psoriasis first. So, that's a red itchy rash. Often there's a little bit of white-ish adherence scale or some of the bread crumbs that Julie was describing after her perms. So this is kind of some of the skin that flakes off, which is psoriasis rash. That's usually what comes first and then the joint symptoms of pain and stiffness follow. But occasionally the joint pain and stiffness will come first. And also occasionally the two will occur concomitantly. So you get the rash and the joint symptoms at the same time.
We refer to psoriatic arthritis as a systemic disease. So, that means it doesn't just impact one part of you, it really affects the entire body. It's also chronic, meaning it's a long-term health condition that can worsen over time. As the disease progresses, too much of this inflammation in your body can cause irreversible joint damage and even affect your heart and blood vessels, leading potentially to cardiovascular disease – but of course it can affect all of the joints in your body, your nails, your eyes and other areas, as well as cause considerable fatigue.
We do know that there is a correlation between how severe the skin disease is, how bad the psoriasis is, and how bad the joint disease is. And there've also been some correlational studies that have shown that other, what we call domains of psoriatic disease, for example enthesitis or inflammation of the enthesis, which is where a tendon or a ligament inserts onto a bone. That if you have more enthesitis, you're also more likely to have more severe joint disease, more severe systemic disease. So it's definitely something to be taken seriously, as you know, each of these domains being involved.
Emily Downward: And you mentioned fatigue, can you help us understand why fatigue is a symptom for people with psoriatic arthritis? And is this fatigue different then what someone would experience if they just didn't have a good night's sleep, for example?
Dr. Bakewell Absolutely. And you've hit on something important, which is that fatigue is complex. So, obviously you want to understand how somebody has slept. You want to understand how much stress they're under, if they're exercising. All of these things can contribute to a sense of fatigue. But for people with psoriatic arthritis-related fatigue, it's, again, this immune system that's gone a little haywire that is revved up and is really draining your body's energy and resources. But you also want to not neglect the other aspects of what can contribute to fatigue. If somebody normally have a cup of coffee in the morning and they didn't that day, is work driving them crazy? That kind of thing.
Physicians can measure fatigue in a variety of different ways, including with the FACIT-F which stands for the Functional Assessment of Chronic Illness Therapy-Fatigue. It's basically a comprehensive set of questions that measure health-related quality of life and patients with chronic diseases such as psoriatic arthritis. It is important if you are listeners, if you're experiencing fatigue as part of psoriatic arthritis or another autoimmune disease, it's very important to tell your doctor so. But fatigue is absolutely a symptom potentially of uncontrolled disease as well.
Emily Downward: These symptoms you can see and feel are tied to one underlying chronic inflammatory disease, which means ongoing inflammation from uncontrolled psoriatic arthritis can over time cause irreversible joint damage. And Dr. Bakewell, how can rheumatologists help patients manage their psoriatic arthritis?
Dr. Bakewell: Rheumatologists have specialized training to diagnose and treat inflammatory arthritis and related inflammatory diseases that affect the joints, muscles, bones, skin and other connective tissues, including psoriatic arthritis. It's important for people with psoriatic arthritis to have open and honest conversations with their rheumatologists to set treatment goals that basically help these appointments be more productive. We want to hear from patients what their personal goals are. Any future activities that are important to them we want to know, and we want to help them reach these goals. We can do this through a variety of different metrics. One of the things that rheumatologists use to know whether or not a patient's disease is adequately treated is to assess minimal disease activity or MDA. This is basically a comprehensive metric that takes into account many different aspects of psoriatic arthritis in order to assess if the condition is getting better across all these different aspects of the disease.
So really the take home message that I want patients to hear is that you shouldn't have to just power through these day-to-day symptoms of psoriatic arthritis, either the joint pains, the fatigue. It's in fact bad for you to do so. It may be a sign that the disease is not under control, which could be causing permanent joint damage. You should openly and continuously share with your doctor any of the symptoms you're seeing and feeling and your rheumatologist, it's their goal to help you treat these disease and symptoms, as well as to stop the disease progression and to help you achieve your personal goals.
Emily Downward: And how can people living with psoriatic arthritis tell when they have too much inflammation, and what should they tell their rheumatologist?
Dr. Bakewell: So the first clue is really the presence of overall symptom patterns. We in rheumatology live in this world where pain is pain, but when does it hurt? Where does it hurt and for how long? So an inflammatory pain pattern traditionally is one that is worse in the morning when you first wake up or perhaps it may waken you from sleep at three or four in the morning and you may find that you have to get up and pace around in order to work out the discomfort. This is in stark contrast to a mechanical-related pain, for example from a bad joint or an osteoarthritic joint, degenerative joint disease. This pain is worse the more that you use the affected area. So the bad knee will hurt worse after you've just played basketball on it.
But the knee that is inflamed from something like psoriatic arthritis will hurt the more that is left at rest. The more that, the quote, “bad humors are given time to work on it” and you have to work out the discomfort. Other telltale signs would be a stiffness that lasts more than 30 minutes in the morning and an insidious onset. So a gradual onset to the pain, rather than a, "I tweaked my knee, I twisted my knee. I tweaked my back, and then it hurt." That's a more mechanical pain pattern. So the pain pattern is critically important and something that we ask our patients about every day in our day-to-day practice.
A second thing that we look for is any kind of visible abnormality. So certainly as a patient, if you're noticing that your fingers, your toes, your knees, your elbows, if they're swollen, warm to the touch and heaven forbid, soon progressed to the point that they're red, these are all very clear signs or symptoms of inflammation, and not just simply an injured joint. Especially if you put it together in a pattern of different areas that were not previously injured, so forth and so on.
And last I want to comment that it is important to know as a patient that you can have flares. So symptoms can wax and wane, vary from person to person, can change locations, even in the same person. And so, continuous communication with your rheumatologist really is key. And the treatment should be tailored to the individual patient, not only their goals, but of course to make sure that inflammation is kept to a minimum.
The only other thing that I would mention is that I really want patients to understand that as a rheumatologist we're here for you. We want to work with you to not only your symptoms, how you're feeling, and to come up with a treatment plan that's personalized for you. We ultimately really do want to help you achieve your personal goals, whatever those may be.
Emily Downward: Julie, can you talk to us about your relationship with your rheumatologist and how do you prepare for those visits?
Julie: So, I like to think of myself as the CEO of my healthcare, and my rheumatologist is part of my healthcare team. And I, because I'm a list maker, I always go in with a list. And I think that probably the most difficult conversation I ever had with her was when I had to ask for a second opinion. I was not completely certain that my treatment was working and really just wanted to know. I needed more answers and had to ask for that second opinion. She was very open to that and made it very easy for me to go in, get the answers that I needed and then return to her office.
Emily Downward: That's great that she was open to it and helped you get the answers you needed.
Emily Downward: What suggestions do you have for others on how to communicate the daily impact of symptoms with their rheumatologist?
Julie: For me, the most important thing has been, when my rheumatologist walks in the door and she says, "How are you today?" My first inclination used to be to say, "I'm fine. How are you?" And I had to train myself out of that mindset when I step into a doctor's office. She is one person who is legitimately asking how I am, and I need to tell her. And I think that the best way for her to understand how I'm feeling is if I explain how it affects my everyday life. Just telling her my fingers hurt means nothing. But if I say my fingers hurt and it's causing pain when I try to button my shirt or when I tried it, when I'm tying my shoes. It hurts when I am using the keys to start my car. That creates more of a picture for her and she sees how it impacts my life.
Emily Downward: That's great. Thank you.
Dr. Bakewell: Can I make one more comment to what Julie just said?
Emily Downward: Absolutely.
Dr. Bakewell: Which I think is great. So, Julie, you commented that your rheumatologist walks in and she's asking you how you're doing in a genuine way. And I think that brings up something that touches on an important aspect, not only of our society. I think we're also used to saying, "How are you?" "Fine?" "How are you?" "Good." That's the start of almost every visit is we walk in, "Oh, hey, good to see you." "How are you?" "Fine." "And then now really, how are you?" Right? "Well, no, actually tell me." And so doing so is critically important. We like the hello and the heys, but we're more interested in the second part. We ask in a genuine way. So I like how you phrase that.
Emily Downward: To find a rheumatologist and for helpful resources on how to help take control of psoriatic arthritis, visit www.psoriaticarthritisinfo.com. I'd like to thank Julie and Dr. Bakewell for all of the valuable information and tips they shared. Stay tuned for more of this conversation in episode two. To read more about Julie's story and join the conversation, visit psoriatic-arthritis.com. You can find more health communities at health-union.com. This is Living With, I'm Emily Downward. Thank you for listening.
Living With is a podcast by Health Union that explores what it's like to live with a chronic condition. Contributors to Health Union communities share how they cope with trying symptoms and treatments, as well as how their daily lives are impacted by their health conditions. Their courage and resilience are inspiring, offering wisdom that transcends dealing with health issues and gives insight on how best to deal with any kind of challenge.
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Listen to Episode 2 here