DK – Deanna Kizis interview audio

EA – Eddie Applegate interview audio

GW – Dr. Grace Wright

DK – Hi, I’m Deanna Kizis and I’m the host of The Psoriatic Arthritis Club, a new podcast from CreakyJoints and the Global Healthy Living Foundation about the ups and downs of managing psoriatic arthritis.

If you’ve been listening to our first couple of episodes, then you know I’ve been living with psoriatic arthritis for two years and I’m doing okay. I’m still having pain and flares and honestly it’s been kind of a lot. I’m learning how to cope with brain fog and fatigue, and I work, and I have an 8-year-old daughter.

I’m not a pessimistic person, but I do admit that sometimes it’s hard to stay positive about everything that this disease keeps throwing at me.

The good news is that talking to other patients about PsA is so helpful. As you’ll hear, Eddie Applegate and I have had more fun discussing PsA than you could ever think possible. And on a serious note, we talk about how there are no easy answers, but there is a lot we can learn when we lean on each other. As a patient, I’m finding that I need more tools that I can use when working with my doctor. And it’s so important to build out a self-care toolkit.

Just a reminder, I’m not giving out any medical advice. I’m not a doctor, just a patient. But there will be a rheumatologist on later in the show.

I’m so excited for you to meet Eddie. This is the first time I’ve ever spoken with him, but I feel like I’ve known him forever. I honestly wish I had.

Yeah, well, we have to use these bodies? You know.

EA – I can’t trade this in for a newer model.

DK – To the end. Yeah, I know exactly, well, I don’t get, it’s not a Subaru. I can’t trade it in for a new one. Yeah.

EA – There’s not a lease on this one. I’m not getting a new one every couple of years with a down payment.

DK – You bought it.

Eddie is 45 years old and lives in the suburbs of Atlanta, Georgia. If I’m sort of a PsA rookie, then Eddie is a total pro. He’s had psoriatic arthritis for almost 20 years and he is a wealth of knowledge. I walked away from this interview inspired and ready to start putting his advice into action.

EA –  have a diagnosis story that I like to say is, it’s a little different than people’s because it was a successful diagnosis early on. Which is, I have, I have heard horror stories from from many people.

In my early to mid 20s I had started to experience a lot of pain and stiffness, especially in the mornings. I would sit in the tub and soak in the tub for like 30 to 45 minutes just to loosen up, especially my hands, my hands were and still prove to be, a bit of an issue. And then I started a job in a town that was about an hour away from where I live. So I had a, a fairly long commute every morning and getting out of the car, I would feel it in my legs. Getting up I could tell there were issues there, so I asked my mother if she thought that I had arthritis, and she’s like, well, “you may, but you’d have to go and get a referral first before you can see a rheumatologist.” So I decided to, just to, go to an urgent care clinic. I didn’t have a primary care physician at the time.

The doctor looked at me, looked at my symptoms, looked at my face, because I still had some psoriasis on my face at the time. I had been previously diagnosed with psoriasis, and within a minute or two, he said, “Oh, you have psoriatic arthritis.” An urgent care general practitioner. First time.

DK – That’s great. You’re so lucky.

EA – I call myself a unicorn for that. I know now how lucky I was.

DK – You’re not lucky because you got psoriatic arthritis in your 20s. But, like, you are lucky, right?

EA – Getting diagnosed easily and getting to see a rheumatologist within a month. I know that both of those are, you know, almost unheard of, in, in real life.

DK – Yeah, I was fast and mine took years. How did you cope with that diagnosis? Because you’re fairly young to get it, right?

EA – And it was a little surprising. I was like, “wow, I’ve got arthritis.” That’s when I kept hearing, “Oh, you’re too young to have arthritis.” I think every one of us no matter what age we are when we are diagnosed, I think that everyone is probably told at one point in time, you’re too young to have arthritis.

But, it’s, I think I caught it near the beginning because I was okay-ish at the beginning, but then it kind of, not long after, right around the time of diagnosis and things seem to be getting worse and worse all of a sudden, like, I, my joints were a lot more painful. Getting up from a seated position or a crouched position was, would get tougher and tougher. Walking would become and look, even look, more labored, not just become more labored. But, you know, my parents and my sister said “you walk like an 80-year-old,” which, when you’re not yet 30, that’s not, that’s not what you normally want to want to hear.

DK – No.

EA – Plus, that’s when my skin started getting worse as well. And I got it all over my face pretty much, and being a guy, you can’t, you can’t, hide behind makeup. Like, Like a

DK – It doesn’t work for that anyway.

EA – I like hearing that. I don’t feel so…

DK – It’s true. It will just peel right off. It’s kind of like, remember when we were in high school and kids would put that flesh-colored pimple cream on? And you’d be like, Wow, you have a giant beige spot on your face with pimple underneath. It’s like that. You’re just like, what is that anyway?

EA – Okay, good. I don’t I don’t feel like I’ve missed anything, though, so I feel a little better about that.

DK – It’s so distressing. And I had a similar experience. So what happened when you went to your doctor and started saying, okay, here are my symptoms? How did you get good care? Because as you know, sometimes you have to push a little bit. I don’t know if you did.

EA – I got lucky with that first doctor. He was really good. He made sure to ask me a lot of questions and tell me a lot of things. So my doctor started me on, was going to start me on a biologic and I was going to take it in conjunction with an oral medication for my disease. It was called methotrexate. And it was fine. My symptoms didn’t get worse. I don’t feel that they got better. But they didn’t get worse. So at, at best I was able to maintain.

DK – Yeah, that’s the part that I personally find really frustrating is that you get the diagnosis. But that doesn’t necessarily mean that you’re going to improve right away. It can take a really long time.

EA – That was me at the beginning. And I didn’t feel like I was improving. Because usually, whenever you go to the doctor, and you’re sick, and they give you medication, you’re like, “Oh, good, I’m gonna be better in a week.” I take this, I take this antibiotic, and 10 days later, I’m going to be fantastic. It doesn’t work that way. And that’s the mindset that we don’t, we don’t realize that we may not get back to pre-diagnosis days, but whenever you do kind of stay where you are — and this is something that I’ve learned over my almost 20 years — that’s when you have to say something.

It all goes back to that communication. It could be that the medication you’re on is not working and it’s not good for you, and so something else needs to be tried. So it was, it was very disheartening for me at the beginning. I was not officially diagnosed with any sort of depression, but I was not in a good mental state in my late 20s and early 30s because I was in pain all the time, I had gained weight because I was not moving. I felt that pain of just plateauing, and you’re just kind of wondering if things are going to get any better, and I wish I would have known then to speak up more or talk with someone. There are many resources out there. I hate that I didn’t know. I do feel like I lost time.

DK – And so what turned it around for you? Because it sounds like you were really kind of plateaued for a long time.

EA – I got lucky with, with number two, and I was on that medication for 12 years, minus a six-month try on a different one.

DK – Does that mean that the medication that you’re on right now is not working as well?

EA – A little over a year ago, I had started having some pain in my knee and in my ankle that was new. And so I told my doctor about it. And he said, “Well, you know, it could be that your current medication may not be working anymore, and may not be as effective anymore. We can look into changing your medication because he’s all about you know, if it’s not working, let’s, let’s try something else.” So I’ve been very lucky with my doctors, I know that. None of that would have happened if I just said, “Oh, I’m fine.” Because you know what they say, the squeaky, the squeaky wheel gets the grease.

You don’t want to be stuck in something that’s not working because you’re afraid to say something. Because if you don’t say something, then nothing’s going to change. If a change is needed, if you feel a change is needed, and you don’t say anything, the doctor is not going to know.

DK – They’re not psychic.

EA – Exactly. They are, they are, they’re wonderful people. But, you know, clairvoyance is not something that is taught in med school.

DK – So this conversation is really important. I like the idea of really letting your doctor know what’s going on, what’s bothering you. And also trying to figure out that balance of, like, Am I really feeling as good as I can? Am I not? What does feeling well with this disease even look like? We asked rheumatologist Dr. Grace Wright how she thinks about this.

GW – If you feel much better then oftentimes patients will say I’m better enough. Because I was so worse before. But my goal is to have you be well. So treatment inertia is, is really a very difficult thing, because it occurs on both sides, the patient and the physician. I may accept too little for you, you may accept too little for yourself. How do we shift that? And part of that, I find, is transforming how we rethink possible.

So I always sort of say to myself, you know, I have a big kitchen analogy of things that I put in the kitchen cupboard and push to the back. And I kind of forget about it and say, well, it’s there, it’s going to last for forever. And we sometimes do that with patients, and patients sometimes do that with their symptoms, where they just accept that it’s going to be there and it’s going to be there all the time. So I go through this exercise of pulling things out of the back of the cupboard, of taking a patient, sort of stepping back and going, are they really as good as they can get? What are the things that we have now that we didn’t have three years ago, or two years ago or 10 years ago, when they got to this date, and it really forces me to rethink, and then have the conversation with a patient to say, you know, you don’t really have to have five swollen joints all the time. Perhaps maybe you can think about being able to walk around the block rather than having to walk and stop every 10 steps. But part of it really is me re-envisioning your possibilities because it’s not often easy for the patient to know that there are other options, that there are additional things that can be done to change their lived experience.

DK – A lot of what Dr. Wright shared reminds me of this conversation we’ve been having on this podcast about minimal disease activity. I’m still learning about it, but my understanding is that it can be a way for doctors to assess how our PsA is doing by looking at a range of our symptoms, a way to make sure that things are getting better across the board. I wanted to get Eddie’s take on this, because it sounded like he was doing well with his PsA for a long stretch of time.

So we were talking about this concept of minimal disease activity and I’m wondering would you think that you are there right now? And if not, what would that look like, to be there?

EA – I think when I first started medication number two, I believe I was in minimal disease activity there for a number of years. I know I’m not in full disease activity. I don’t feel like I did pre-pre all of that. But I don’t feel as good as I did right after I started that. So I am, so if minimal is full, then I’m probably at about three-quarters of a tank.

DK – So you have 25 percent to go.

EA – Yes, I have, I’ve noticed more recently, within the past year, year and a half I’ve noticed that pain comes more, stays a little longer, and then when you feel the, the aches and the pains and you see the swelling and the knots kind of creep back in more you get, it is a little discouraging, but you just kind of realize that I’m still able to function, I’m still able to, to do a lot.

But you just, you notice it more. And I think that’s when you know you’re not in minimal disease activity, when you, when you notice it. You know, when you’re, when you’re not thinking about it as much, you’re not noticing as much, then you kind of realize it, yeah.

DK – Minimal disease activity for me is when I can remember my own friends’ names.

EA – When I can get out of the car without grunting.

DK – When I can eat a lollipop without shattering my own jaw.

EA – When I can take the top off of the two-liter bottle by myself without any help and without feeling it right after.

DK – Yeah if I don’t have to hand my daughter the string cheese to open for me then I’m in minimal disease activity.

EA – Exactly.

DK – You’ve been dealing with this for a long time, and you advocate for really good health care, what would you say to someone who’s been living with this, or maybe you know, is new to this.

EA – Definitely talk to your doctor. Let your doctor, or medical professional, because it could also be a physician’s assistant, or a nurse practitioner. Let your medical professional know how you’re feeling. Don’t try to sugarcoat it. You don’t get extra credit for being a martyr on this. “Oh, yeah, I’m fine.” No. If your pain is an 8, say your pain is an 8. You’re not going to get extra credit for coming in saying, “oh, I’m just at the 3 today and I’m still able to,” tell them, you know, be honest.

DK – I had to learn that the hard way, to be honest. Yeah. I actually said out loud. Someone close to me is like, you know, you really need to call your doctor. And I heard myself say, “I don’t want to bother them.”

EA – I’m glad that it’s not just a southern culture mindset. It’s everywhere. Because we’re all like, “Oh, I don’t want to bother the doctor.” I don’t want them to think that I am, they’re gonna think that I’m just a complainer.

DK – I worry about that all the time. All the time. I also worry that people think I’m making it up. That’s like a big one because people can’t see how bad I feel, I really worry that people think I’m just histrionic or attention-seeking, or–

EA – As I said, you, people, you may think “oh, they’re, she’s just doing that for attention or he’s just, he just wants people to feel sorry for him.” No I don’t. We know our bodies better than anyone. So why shouldn’t we be our best advocate for this vessel that we know better than anyone else?

Knowing your body and learning not to be afraid to speak up to the doctor. It’s taken me a long time, it’s taken me almost 20 years to be able to say, like, “Nope!” At my last telehealth visit, I said my hand is hurting, you can’t really tell, but they’re swollen, right here, my feet as well. And she said, “Okay, well, let’s get a new baseline. Let’s get some X-rays. Let’s see how that goes.” So if I didn’t speak up, that was not going to happen.

Keep up with your symptoms, even if it’s, you know, writing down on a piece of paper or a notepad or on your phone beforehand: “This is how I’ve been feeling.” Keep track of everything. There are wonderful apps that will help you.

DK – I do not know about the wonderful apps.

EA – ArthritisPower is a wonderful app. I know. It is great to put in your symptoms. And it’s great to look back and see how things can change over time. And on a certain day, like, “Oh, I felt bad here.” And it’s great if you switch medications and then see, okay, let’s see if this medication is working.

But if you’re a writer, write it down. Just have some way to, so you don’t forget because a lot of times we get amnesia whenever we go to the doctor’s office because we forget everything that’s been happening. You’re, you’re on your drive over there. Alright. My feet have been hurting for the past two weeks. I’ve been extra tired. I felt this.

And then you get to the office, “So how are you feeling today?” “I’m fine.”

DK – Uh huh. Oh, I’ve totally forgotten. I look, I mean, I have brain fog anyway. So it’s amazing I’m even here right now.

EA – And then we get in there afraid to tell the doctor how we really feel, so if worse comes to worst, write it down and go “here.”

Go, “here you go. Here’s the paper. This is how I feel.”

DK – Uh, I love. You know everything. I’m so happy.

I told you that Eddie has a wealth of knowledge and he’s got a lot of support to give, right? So before we wrapped up, I got a little bit more of his wisdom.

EA – Learn what you can and can’t do. If there’s the things you can’t do, are the things to make it where you can do them? Are there little life hacks? Are there tips, are there tricks? Are there aids that will help you to do that? Don’t be completely frightened. Is it, is it scary? It’s absolutely a little bit scary. Let’s, let’s be honest, it is scary at times. But it’s, you know, your life isn’t over.

And I think that’s where learning your limits from what you can and can’t do. Because learning what you can do. “Oh, I can do this, I can do that, I can, I can still do that.” Focus on the can. I think too often, and I know that I’m guilty of it as well, “I can’t go and this. I can’t do that.” You know, it’s gonna, it hurts too much for me to do this. So what can I do instead?

DK – One of the things that I also like about that is that there are some things that I found that I can do, that have become new, very passionate interests of mine. You know, I don’t think that Zumba is in the cards anymore. But my vegetables are amazing. So yeah, and I didn’t know that I would actually enjoy gardening as much as I do and get as much out of it and also how it actually helped keep me in shape. So there have been things that I’ve focused on.

EA – It is self care. Because a lot of times people forget how important self care is. This disease is more than just a physical disease. It can take its toll on you, mentally and emotionally as well. And so you do have to make time to recover. Just, take a holistic approach to yourself, you know, mind, body, soul, and just, you know sometimes soaking in the tub. That’s one of that’s one of my, my self-care, is like, I need to soak in the tub, is one.

So whenever I watch House Hunters and they go, “I don’t need a tub, I just need a shower. I’m like, “No, you leave that tub right where it is.”

DK – It just occurred to me, I do have this friend who, when I’m really upset about something, she does tell me to make a list. And on one side of the list are the things that I can’t control, right? And on the other side of the list are the things that I can. And then she says, “Okay, now turn your attention to all of the things on the right side of the list.” And that really is so helpful to me.

EA – Yeah, because we too often focus on that negative. My mind can be a very, just a dark cave of negativity. And it’s just, you have to, you have to fight that. You’ve got to realize that there is some happiness, and you know, what, what I can do? And am I hurting today? Yes. Can I still sit and do my New York Times crossword puzzle app on my phone? Absolutely. Sit in the tub and soak for a little bit and just relax for a little bit. Can I do that? Yes. And so it’s just those little things.

Those are some things I would suggest to people. There’s no, there’s no perfect roadmap that fits everybody. There’s no one plan that fits everybody. But we’ve all been there in some way, shape, form, or fashion. And we all are just trying to get through this together the best that we can. We don’t have all the answers. We’re not going to have all the answers because there’s so many things that we don’t know. But listen, learn. Ask questions.

DK – Thank you so much. This has been so much fun. I love talking to you.

EA – I love talking to you as well.

DK – Thank you so much for talking to us. Seriously. It’s been great.

EA – Thank you for having me.

DK – I hope you walk away from this conversation feeling as supported and validated as I do. I don’t have close friends with chronic illnesses like psoriatic arthritis. Eddie — and  Diane and Lauren, who were in the first two podcast episodes — were the first people with PsA I’ve ever talked to about what it takes to live with this disease.

What I got from them is that you have to keep talking to your doctor about how you’re feeling, and to be really clear about where you’re struggling.

I also learned that it’s okay that I’m going through various treatments and I can know that just because I’m not feeling great yet doesn’t mean I won’t feel better at some point. And I loved hearing about the life hacks that can help me cope.

And most importantly, it felt so good to find out that even though we have a chronic disease like PsA, there is a community that can help. That includes the right health care provider, resources like CreakyJoints, talking to others who have this disease and putting yourself out there to make new friends, which is what I did while hosting this podcast.

That’s it for The Psoriatic Arthritis Club. Thanks so much for listening.

This podcast was made possible with support from AbbVie.

For more support and stories from other PsA patients like you, subscribe to The Psoriatic Arthritis Club or visit psoriaticarthritisclub.org. You can also visit CreakyJoints.org for the latest information and news about living better with PsA.

DK – Deanna Kizis

DT – Diane Talbert

GW – Dr. Grace Wright

DK – Hi, I’m Deanna Kizis and I’m hosting The Psoriatic Arthritis Club, a new podcast from CreakyJoints and the Global Healthy Living Foundation about the ups and downs of managing psoriatic arthritis.

I’ll be talking to people living with PsA, sharing their stories, what they’ve overcome, how they’re coping, and what’s working for them, plus perspectives and insights from top rheumatologists.

I’m an author and a journalist who interviews people for a living, but the real reason I was so eager to get involved with this podcast is because I have psoriatic arthritis too — and I know I have a lot to learn about it.

In the two years since I got diagnosed, one of things that’s started to worry me the most is what will it be like to have this chronic disease for the rest of my life? I’m only 51 and I have an 8-year-old daughter, so there are a lot of unknowns for me. I want to stay healthy for her, and for myself.

That’s why I was so eager to speak with fellow PsA patient Diane Talbert, who’s been dealing with psoriasis and psoriatic arthritis for pretty much her entire life. She has been through so much, as you’ll hear, and she was really comforting and helpful.

Just a reminder, I’m not doling out medical advice here. I’m not a doctor, but there will be one on later in the show. I really think it’s important that those of us who have PsA try to help each other by sharing our experiences.

So let’s do it.

I want to know that. When I get to your age, what is gonna happen?

DT – You’re going to be, you’re going to be awesome.

DK – I am?

DT – You’re going to be awesome. Yes.

DK – Diane is 63 years old and she lives in Maryland. She’s married, has two sons and six grandchildren, and she’s one of the most positive people I’ve met on my PsA journey so far. But seriously, Diane has had it tough. Her disease went mistreated for decades and she had some early childhood experiences that must have been really hard.

That’s why I was struck by her resilience and the fact that she kept pushing for better care for her PsA.

DT – Well, I got psoriasis at the age of 5. I probably had it before that, but I remember it was my first day of school, when I went to school, they told me I couldn’t come in because I was covered from head to toe in psoriasis, and they thought I was contagious.

So I knew from that moment that I was different. I didn’t realize it before then, and all the other kids were wearing, you know, short sleeves and shorts. And my mother always covered me up in clothes because she didn’t want me to feel different or embarrassed.

I didn’t really feel out of place until maybe in my teenage years, and that’s when kids started pointing and staring and going, “ooh, what is that on you?” and you know, kids are mean, so they were saying mean things. And that kind of, you know, made me feel bad and very insecure in life.

They didn’t know how to treat my skin. Nobody had ever seen anyone with such a bad case of psoriasis, and when you would read about psoriasis in textbooks, there’s always flaky, white, and mine was not like that. I had dark purplish psoriasis. They just didn’t know how to treat me, so that was the problem.

DK – I’m so sorry. And what a terrible time to be, to be an adolescent, and going through something like that, where you’re already so self-conscious and trying to find your place in the world.

DT – I actually started having pain at a young age, but again, because nobody even heard of psoriatic arthritis. I started having symptoms that I remember most at the age of 25. And I remember I would go to my doctor, and I would tell them, you know, I’m having these symptoms of having pain in my body, I can’t lift my arms, can’t comb my hair.

I just started getting, like, stiffness in my, in my shoulders, there was pain in my hands and my knees. It was just pain all over. And I went to, to my doctor, and back then because they didn’t put, psoriasis wasn’t connected with psoriatic arthritis. So they just told me it was in my head.

So I went back to the doctor again saying I think this is arthritis. He goes “No, you’re too young to have arthritis.” He was kind of saying, stop over-exaggerating, there’s really nothing wrong with you. Just go get some rest, you’re too young to have this, have the pain that you’re saying you’re having.

This, this went on for years, this going back and forth to doctors that would give me medicines, the ones that would even give me pain medicine, but they would all say “there’s nothing wrong with you, you know, just like chill out.” So this, so I decided there’s nothing wrong with me, you know, maybe it is in my head.

DK – Oh my gosh, I hate this story.

DT – It got worse. And actually a dermatologist at the time says, “Why don’t you see a rheumatologist?” I didn’t know what a rheumatologist was. Go see a rheumatologist. So I’m 50 years old, I went to a rheumatologist who did extensive tests on me from head to toe. I mean it was just amazing, and he came back and he says, “Yes, you have what’s called psoriatic arthritis.” From that day on, we started treating me for psoriatic arthritis.

DK – Do you think that that had to do, anything to do with your gender? Or being a Black woman or any of those things?

DT – I believe, because I grew up on the wrong side of the tracks, I was a woman, I wasn’t very educated when it came to my skin, that they, they told me anything.

I don’t think that I would have suffered so much in my life if I wasn’t a Black woman, I think things would be different, and also, I believe that because I didn’t have the greatest insurance back in the day that I got low quality care. And I think that that’s something that we all need to talk more about is these disparities in health care, you know, we get overlooked a lot, and this is nothing new, it’s always been like this, you know. I went years taking treatment that didn’t work for me. And not one doctor said, “let’s, let’s do something different.”

DK – You’ve had all of this experience. And so how, is there a way to help other people in terms of, if there’s someone else who was listening to this? Who is a person of color, a woman of color? A person who doesn’t have a lot of money? What would you add? What would you say to them?

DT – That’s such a good question. For me pain is physical, pain is not something we dream up, it’s it’s really there, you know because nobody believes you doesn’t mean that it’s not there. I mean, having chronic pain affects your body, it affects your mind, your emotions, it affects your relationships with family and friends, and it’s just, you know, it’s something that we just have to keep harping to tell people: this is real.

And if you do get a medication, and maybe if you are, don’t have a lot of money, don’t settle for the first medication your doctor throws at you, especially if it’s not working, you know? And then if it’s not working, say something. Don’t wait like I did, 25 years before, you know, saying, something is wrong here.

I mean and you have to get treated because you don’t want to damage your joints, you know. We can’t wait too long to start a treatment, you know, because we don’t want to get sicker.

DK – It’s hard to hear Diane’s story and about all of the roadblocks she faced. Race and medical care is such an important topic — and, frankly, it could be a podcast all on its own — so I asked rheumatologist Dr. Grace Wright about the challenges of accessing better care and treatment for PsA when you’re a person of color.

GW – When we think about the difficulties that patients face and being diagnosed, it’s compounded by the difficulties patients who have different skin colors often face. So you know, there are so many barriers that we can run into.

It’s difficult when you have a shortage of supply of physicians who look like you, that might connect with you more easily, in some cases, based on you know, the kinds of rash that they themselves may experience, the differences, because we don’t have enough diversity amongst our health care provider groups. So that’s not always easy. And so sometimes you really have to stand up and say, “that’s not what I said, that’s not what I’m feeling.”

So you know, I go back to the courage that’s needed to confront the doctor who’s dismissing you, the courage that’s needed to find that person who’s going to take the time to do the investigations. And, and sometimes it’s clear to a patient that it’s not going to be this person, because I don’t, i don’t have a rapport, I can’t seem to get them to hear me. And it’s okay to then find somebody else.

So it’s really having the courage to insist again. It’s like if you go to the store and you wanted, you know, this bag of flour, and they don’t have it, you ask them, “can you check in the back and see if it’s there?” It’s the same approach. Can you check again? Is there a blood test, or somebody else I can go to? Because I really want to know what this is. Maybe it’s just dry skin. But I really want to know. That’s a way to build courage, so that you’re able to push past the barrier, in which sometimes you’re discounted as a patient sitting in the room. I can, I can talk about this for a long time. We’re actually writing an entire educational series on this. So it’s a very, very important issue.

DK – Hearing Dr. Wright talk about courage immediately made me think about Diane, because she does have that courage. She pushed, she persisted, and when she finally found the right doctor, things started to change for the better.

So then how did you get properly treated? How did you find a doctor? What happened?

DT – It took me 30 years to find a doctor. I’d lost count of the doctors that I had seen over the years, and I wasn’t educated enough to know that I could get clear. So in my mind, I was starting with “this is the best I’ll ever, ever get.” When I was, I think around 38, my body kind of exploded. I was 90% covered in psoriasis and I was in the worst pain in my life, it even hurt for water to touch me. And I knew at that time, it’s like, nobody can live like this.

That’s when my husband and I decided, you know, enough is enough. We’re just gonna find a good doctor, you know, and he took off from work that week. And that’s what we did. We searched for a doctor, and we found one, and I’ve had him for like 15 years now.

DK – What happened when you went to the doctor? What, what did the doctor say?

DT – He was just, he was the best, he sat me down, he actually talked to me first, you know, we need to work on a treatment plan that, really, that works for you. He wasn’t talking at me, he talked to me, you know, we need to do something together.

When treatment is not working, we, he actually sits me down and we, we will discuss a treatment plan, like I said, we’ll try this for three months and if it doesn’t work, then we’re gonna put you on something else. He is not one of these doctors who rushes in, then rushes out. He sits down with me and has a conversation, and I really like that.

DK – Oh that’s fantastic. I mean, having the right doctor is so important. Because it’s like, if you can’t even, you know, get to the point where someone’s listening to your symptoms and has good ideas — and by the way, more than one idea — then you can’t get better. They’re kind of the gateway to whatever treatment you’re going to need, right?

DT – Yes, yes exactly.

DK – So Diane, tell me about what kind of symptoms you have right now. What’s going on with you?

DT – Well right now, you know, I have the psoriasis, of course, it never goes away, but I also have the pain of the psoriatic arthritis. It’s in my elbows, my shoulders, my arms. It’s like the pain starts at my knees and it just, it just works its way up and it’s just, it doesn’t go away. The pain is always there, all the time. That’s, that’s basically it.

DK – I get it. I’m assuming you’ve been talking to your doctor about what’s going on? Are you guys going to keep going with the same one or try something else?

DT – I have been on seven biologics. And I think my body is just running its course, but we, we always just go to another one if it’s not working in six months, we’ll go off of it and start me on a new one to see if it works. And so I’ve been on biologics for 20 years now. So it’s just, it’s just ran its course and I understand that.

DK – Look, I’ve only had PsA for two years and I’m still trying to find the right treatment plan. It can be really frustrating. When I was first diagnosed, I thought I would just take a medication and feel better right away. Now I know it can take more trial and error than that. And, look, as Diane said, if one medication doesn’t work, partner with your doctor and figure out what’s next. For me, that seemed like really good advice. So next our conversation turned to the idea of what feeling better would look like for us.

I know that doctors now are doing this thing, where they’re talking about the idea of minimal disease activity. I think the idea is getting to the least amount of symptoms, kind of across the whole spectrum of symptoms that you have. So for me, you know, what I would consider like, a more minimal disease activity would be, my skin’s actually pretty good. But not two or three flares a month, and fatigue issues and brain fog, those would be things that I would really like to see minimized, personally.

DT – So for me, I guess it would be, like less flares. If I had less flares, I wouldn’t stay in bed as much. Maybe I would go to the store more often, or, you know, even go, even go out with my husband sometimes instead of going, you know, “I’m really drained right now. I don’t want to do anything.” Or when friends call me I can say, you know, I can stop saying, “I’m sorry, I’m tired today,” you know, and then them saying, “well, you weren’t tired yesterday.” The other thing would be, you know, the pain, we have pain every day. So I guess less pain would be one of them, even, you know, it, it hurts to walk sometimes.

So I mean that would be minimum disease activity to be able to be able to walk on longer walks. I have a dog, I can’t even walk my dog because it’s too much and he’s not a big dog, but he’s strong, and I’m scared he’s gonna hurt me.

DK – Because you’ve really been dealing with this for a while. How have you been able to deal with it, in terms of, emotionally? I mean, you have so much experience with this. So I don’t know, it must have changed over time.

DT – It did. It actually, it actually got better for me as I got older, as I got wiser, as I learned about me, my disease. But I also had to learn how to tell my story, and that’s what I did. I learned to tell my story. It wasn’t an overnight thing. It took me a long time to get where I’m at, but my having psoriasis and psoriatic arthritis have truly made me a better person. Truly.

I’ve got to speak in front of the FDA before, you know? I go to Capitol Hill every year and speak in front of Congress, you know. I attend conferences, I go to events, you know. I’m doing this podcast right now. So I get to do all these amazing things in the name of psoriasis and psoriatic arthritis. I have met people, seen people, that most people will never see in their whole life.

Someone told me a bunch of years ago, you have a voice, use it. That had to be the best advice ever. Use your voice. You know, I just never knew how far my voice could go. And sometimes I still to this day, I know like, um, you know, stop mumbling girl, you know?

DK – No, you’re not mumbling!

DT – I just knew a few years ago that I wanted to help people. I didn’t want people to feel like they were by themselves. But that’s how I felt my whole life, that I was alone, that there was nobody like me, no one understood.

DK – I admire Diane’s attitude. She’s not so positive that it feels like a bunch of bull. She definitely is keeping it real. She has symptoms, she doesn’t have it all figured out. But she has this wisdom and perspective that is really reassuring, right? Anyway, like I said at the start of this podcast, I have concerns about having a chronic illness for the rest of my life. So I was eager to get Diane’s take on that.

And what about the stigma? You talk about how you have, you know, skin stuff, when you’re flaring, when your skin is flaring. It’s always flaring, right?

DT – It’s always flaring.

DK – So how do you deal with that? Do you worry about stigma anymore? Are you just like…

DT – Not at this point in my life, I don’t care any more. I’m not, I’m not a teenager anymore, like I’m in my 60s. If you don’t want to look at me, go away. You know, just just leave me alone. I don’t really care anymore. You know, that’s just my take on it.

DK – I think as women, we gain a lot of power back when we decide that we’re not here to be looked at by other people for approval. Yeah, yeah, I don’t, I don’t really need that, actually. I have so much more to offer than what, you know, my leg looks like. And if you don’t get that, then I don’t, I really don’t have time for you.

DT – That is so true.

DK – I worry about, you know, the progression of the disease. I get scared. I try not to think about it too much, you know, because I worry about pain, and you know, if I’m this way now, what am I going to be like in 20 years?

DT – Trust me, I understand what you’re saying. And I used to feel the same way. But like I say, you know, for me, I had to learn to balance my, balance things in my life and I couldn’t really worry about you know, am I going to get worse?

But one of the things that I’ve learned over the years, we have to also take care of ourselves, you know, somebody else is not going to do it for us and we have to do it for ourselves. And one of the things I do, as a psoriatic arthritis patient, as you know, we get tired more often. So we need more sleep, so I’m saying, go get your rest, you know.

And another thing is keep your, keep your stress under, you know, at a minimum. It’s hard, but stress does, it really triggers our disease, you know, so how to manage your stress.

And then, the last thing you know, you know, growing up, as I said before, I kept to myself, wouldn’t talk to people. So I used to keep every, everything in and wouldn’t tell anybody. And if this is you, I would suggest you know, maybe just talking to a therapist, or a good friend, or just, you know, anybody. And my last thing is remember, you are not alone in this journey. There’s always someone you can talk to or help you.

DK – Diane, this has been such an incredible pleasure. Thank you so much for taking the time to talk to me. Really. I learned so much.

DT – No, thank you. This was awesome. Thank you for making me feel comfortable. I’ve learned so much from you, too. Thank you.

So I think Diane helped me feel less alone, and I hope she did that for you too.

Speaking with her was really validating. I struggle with the fact that I have a disease that other people can’t see. Yeah, I have psoriasis, but I can cover that up. I worry that people will think I’m a wimp if I don’t feel well or I’m being too needy or complainy. Hearing about everything Diane’s been through, I think it does give me that permission to take care of myself.

Diane showed me why I shouldn’t settle, even if it’s been a really long time since I’ve felt well. I was struck by her perseverance and how she ultimately developed the confidence to be heard. Her story shows how important it is to have doctors you trust, who listen to you, and who will work with you.

And by the way, hearing her say that it’s going to be okay really meant something to me, because she’s been there, and she’s still fighting.

That’s it guys. Be well, take good care of yourself, and thanks for listening to The Psoriatic Arthritis Club.

This podcast was made possible with support from AbbVie.

For more support and stories from other PsA patients like you, subscribe to The Psoriatic Arthritis Club or visit psoriaticarthritisclub.org. You can also visit CreakyJoints.org for the latest information and news about living better with PsA.

ER – Dr. Eric Ruderman

GW – Dr. Grace Wright

AO – Dr. Alexis Ogdie

Welcome to this Patient Audio Guide about psoriatic arthritis treatment. This audio guide is produced by the nonprofit CreakyJoints and the Global Healthy Living Foundation and is made possible with support from AbbVie.

Maybe you or someone you love suspects you could have psoriatic arthritis (or PsA for short), or perhaps you’ve been recently diagnosed with psoriatic arthritis. Or maybe you’ve had PsA for a while, but you’re experiencing new symptoms or are concerned that it’s getting worse.

This audio guide series can help you learn more about psoriatic arthritis and how it affects your health, so you can manage it better and start feeling better.

Remember, this is not a substitute for professional medical care. Always talk to your doctor about issues concerning your health and medical condition.

To learn more about what it’s like to live with psoriatic arthritis and to hear from fellow patients like you, check out The Psoriatic Arthritis Club podcast, available wherever you listen to podcasts or at psoriaticarthritisclub.org.

In our audio guide on psoriatic arthritis symptoms, we explained that PsA is a chronic inflammatory disease that can affect your skin and joints. It can also cause other symptoms, such as inflammation where tendons attach to bones, called enthesitis; swelling of your fingers and toes, called dactylitis; changes to the fingernails, such as pitting and thickening; and fatigue.

Not everyone with PsA will experience all of these symptoms. The combination of symptoms that you have, and how they affect you, may help determine how your doctor approaches your psoriatic arthritis treatment plan.

This audio guide will provide an overview of various treatment options for psoriatic arthritis, so you can be more informed when you talk with your doctor. But before we get into that, we need to spend some time explaining the importance of treating your psoriatic arthritis in the first place.

Let’s start by explaining what we mean when we say that PsA is inflammatory. This means that there is an abnormal response of your immune system. Your immune system is normally in charge of identifying germs and other foreign substances, but in PsA, the immune system starts attacking your own healthy tissues and cells, specifically the skin and the joints.

Here’s more on this from Dr. Eric Ruderman, a rheumatologist at Northwestern University.

ER – If you have very active arthritis, it can cause damage to your joints, and that damage may be irreversible. And so the sooner you recognize what you have, and start on some treatment that can control it, the less likely you are to have damage down the road because you’ve interrupted the process. So that’s really critical. People who have really active disease are more likely to have heart disease, they’re more likely to have strokes, they’re more likely to have vascular disease because of all the systemic inflammation that they have. There are other illnesses that are seen in higher frequency with people with psoriatic arthritis, such as inflammatory bowel disease, like colitis. Eye disease, so people with psoriatic arthritis get uveitis, which is an inflammatory problem in the eyes that needs to be managed, or it can affect your vision.  The impact on your whole body by having psoriatic arthritis is driven by the inflammation. It’s not just in the joints, but it’s all through your body, it can cause all these other problems. And by controlling it, you may reduce your risk for some of these other complications.

So it’s important to understand that PsA is driven by inflammation and if your condition is not under good control, you could experience irreversible joint damage, which can impact your mobility and physical function.

Though that may sound scary or overwhelming, on the other hand, it should be reassuring to know that an effective treatment plan can help prevent further damage to joints as well as treat the other symptoms of PsA.

This may inform why your doctor is making certain treatment recommendations. Here’s more on this from rheumatologist Dr. Grace Wright.

GW – So the goal of treating psoriatic arthritis and in fact, all inflammatory arthritidities, is to number one, improve signs and symptoms. I want you to feel better. But I also want to stop what’s happening on the inside, which is damage to the joint structures, right? So yes, we’re going to look at getting rid of the stiffness and the swelling and the fatigue and the pain that you feel. But I also want to make sure that the bones are intact, that your joints are not being destroyed. So that 10, 15 years down the road, we’re forced to do surgery to fix that joint, because we didn’t save that 10, 15 years earlier. So that’s one aspect. And then when we think about the skin, yes, we would love for everybody to have 100% clear skin. And we actually do have therapies now that for some patients are able to do that. Others will get 75% improvement, 90% improvement, but really, we want to get you to the best possible place in terms of getting you back into your life. That’s kind of my threshold. Can you get back into a life where you’re not always thinking of, “Oh, my skin; oh, my joints; oh, my back; oh, I’m so tired” — where you can now take your energies and do something with them, not just sort of have to bury all the symptoms that you’re maintaining. We now have some very effective therapies that can work really well for many patients.

You may be wondering, “well, how would I know if I’m at risk for irreversible joint damage or other PsA complications?” The answer is that your doctor monitors how your psoriatic arthritis is doing to make sure your symptoms are improving and to help prevent long-term damage.

They may order blood tests to check for levels of inflammation or X-rays to look for signs of joint damage.

Your doctor may assess your overall PsA symptoms by measuring something called

minimal disease activity, which is a way to evaluate your psoriatic arthritis based on a number of different factors. It includes counting the number of tender and swollen joints you have, how much of your skin is affected by psoriasis, and how much enthesitis you have. Your doctor will ask you, as the patient, to evaluate your own pain, function, and assessment of how your disease is impacting your life.

If your score is high in most of these areas, it could suggest that your disease is not well-controlled.

On the other hand, if your score is low in most of these areas, it could suggest that your disease is being well-controlled and you would likely be feeling better.

So now let’s spend some time discussing what PsA treatment options include. The focus of this audio guide is on explaining various medications, but it’s important to note that a well-rounded treatment plan may also include physical or occupational therapy and healthy lifestyle changes, such as diet, exercise, and stress management.

Dr. Ruderman told us that he thinks about medications in two broad categories: those that only address symptoms like joint pain, and those that also address the underlying systemic inflammation process.

In addition, some medications work better for certain symptoms and not others.

ER – When I work with somebody to come up with a treatment plan for psoriatic arthritis, there are some medications that just help them with their symptoms, and don’t really address the process.

Medications in this category include non-steroidal anti-inflammatory drugs, or NSAIDs for short, such as ibuprofen. They can be prescription or over the counter. These medications can help relieve joint pain and stiffness and reduce inflammation.

Corticosteroids, including oral medications and joint injections, also fit into this bucket. They can help relieve symptoms like acute joint swelling and inflammation. They may be helpful during a disease flare-up, but they’re not recommended for long-term use in PsA.

There are also topical medications, like creams, that can be used for psoriasis. They help reduce skin inflammation caused by psoriasis plaques.

ER – And then there are a variety of medications that we think of as systemically active medications that help address the process.

By “process,” Dr. Ruderman means the systemic inflammation that is driving PsA disease activity. There are many medications in this bucket.

You may hear the term “conventional disease-modifying antirheumatic drugs” or conventional DMARDs. These are medications, often given orally, that can help relieve joint pain and stiffness. Methotrexate is an example of a commonly prescribed DMARD for psoriatic arthritis.

Another category is known as “targeted synthetic disease-modifying antirheumatic drugs.” These are oral pills that target specific parts of the immune system to help reduce inflammation. They can reduce joint pain and swelling and may help prevent long-term joint damage. These medications are often categorized as oral small molecules and include Janus kinase, or JAK, inhibitors, and PDE4 inhibitors. They may sometimes be taken in combination with some conventional DMARDs.

Another broad category is known as biologic disease-modifying antirheumatic drugs, or biologics. Given as injections or infusions, these medications act on specific parts of the immune system to help reduce inflammation. They can reduce joint pain and swelling and may help prevent long-term joint damage. There are many different kinds of biologics. They may sometimes be taken in combination with some conventional DMARDs.

Which medications you and your doctor decide on will depend on many different factors. You and your doctor should discuss things like your current symptoms, your goals for treatment, how the medication is given, the potential side effects, your health history, and the severity of your psoriatic arthritis.

Here’s Dr. Wright on the importance of getting a treatment plan that is personalized for you.

GW – So the right treatment for a patient treats the disease that they have. There are some patients that have very little skin, some that have very little swollen joints, some that it’s on the axial, some for whom function is really bad because of the fatigue, but other than that, they’re not so bad, right? So we have to think about these areas of minimal disease activity, all of the domains that we’re checking here, but then apply that to that particular person. So yes, you want your treatment to address everything, understanding that it may not be one approach, one drug that treats this, it may be that your fatigue is improved by exercise plus your medications, you may need a topical, plus your injectable or your oral, you know, in addition to changes in diet, in order to address this. But at the end of the day, I want you to have this holistic approach that addresses all of you when I manage your disease.

Dr. Ruderman explained that many patients have concerns over medication side effects. Each medication has its own set of potential side effects, or the benefit-risk profile. You should make sure to talk to your doctor about both when you’re deciding on a treatment plan.

ER – People are, you know, appropriately and understandably concerned about risks and side effects with different medications that you talk about, you know, with them, especially these days when they’ve seen commercials on TV. And, you know, they always have that list of things that could happen, some of which sound horrific. And, you know, part of my job is to say, Well, look, you know, they have to tell you all those things, but the risks are pretty low. And here’s the story. But then you also have to talk about the risk of not treating things, you know, that the alternative to not having the medicine is not zero risk, it’s the risk of having a disease that’s not well treated. And what’s that going to lead to? It’s, you have to sort of have that, that becomes part of the discussion.

Another common question that comes up about treatment is: When will it start working? When can you expect to start feeling better?

GW – So we can assess whether medication or a treatment strategy works by measuring it, right? So we can look at the skin and say, is the skin improving? We know from all of the clinical trial data how quickly we expect them to work, and how much we expect them to work. If I have you on a medicine that should work within 12 weeks, and it’s now six months and you’re still struggling, it’s clearly not working for you. But what we don’t have is a magic solution where within one week, you’re better. And I think part of it is really setting expectations that it typically takes about three months for us to see, you know, effect x, whether it’s joints getting better, skin getting better. Nails, for instance, will take sometimes a year because nails grow slowly. So it’s really sort of understanding all of these areas that we talked about, they all have their own timelines. But we know for the different agents, what those timelines are, and can help guide you so that we can, you know, level set the expectations appropriately.

You may hear other PsA patients talk about trying different medications in order to find one that works for them. Because psoriatic arthritis affects each person so differently, this “trial and error” can be a common part of your patient journey. Here’s some perspective from rheumatologist Dr. Alexis Ogdie.

AO – So sometimes patients do get really discouraged, particularly after they fail a couple drugs, for example, and I shouldn’t say that they failed the drug, the drug has failed them. So once the drug has failed you a couple times it gets frustrating. But what I’d say is, you know, hold hope because there’s many different therapies available and sometimes it’s not the first one or the second one, sometimes it’s the third one. But keep hanging in there and we can generally find something that’s going to make you feel better.

If you’re listening to this and feel discouraged about how your PsA is doing, we want to end with this insight from Dr. Wright.

GW – So the first thing I say, if you’re not doing well is that you can be better, you can be better, there are options that we have. There are things that we can do today that we couldn’t do 5, 10 years ago. And so find somebody who will listen to your voice, find your own voice, so that we can certainly start to approach you with a different set of options so that you can start to become reengaged in your own life.

We hope this audio guide has provided helpful information about the types of medication treatment options available for psoriatic arthritis, the importance of treating inflammation to reduce the risk of irreversible joint damage and control other symptoms, and why your doctor needs to know about all your PsA symptoms in order to help pick the right treatment approach for you.

Psoriatic arthritis can be a complex condition to navigate, but remember that there are many effective ways to treat PsA, especially when you partner with your health care providers. You have what it takes to deal with this.

We’d like to thank Dr. Ogdie, Dr. Ruderman, and Dr. Wright for their input and expertise. Keep listening to our audio guides for more about managing psoriatic arthritis.

For more about what it’s like to live with psoriatic arthritis, check out The Psoriatic Arthritis Club podcast, available wherever you listen to podcasts or at psoriaticarthritisclub.org.

This audio guide was made possible with support from AbbVie.

And for more information about managing PsA and to join a free, worldwide support and advocacy community of PsA patients and their families, visit CreakyJoints.org, which is a part of the nonprofit Global Healthy Living Foundation.

ER – Dr. Eric Ruderman

GW – Dr. Grace Wright

AO – Dr. Alexis Ogdie

Welcome to this Patient Audio Guide about healthy lifestyle changes for psoriatic arthritis. This audio guide is produced by the nonprofit CreakyJoints and the Global Healthy Living Foundation and is made possible with support from AbbVie.

Maybe you or someone you love suspects you could have psoriatic arthritis (or PsA for short), or perhaps you have been recently diagnosed with psoriatic arthritis. Or maybe you’ve had PsA for a while, but you’re experiencing new symptoms or are concerned that it’s getting worse.

This audio guide series can help you learn more about psoriatic arthritis and how it affects your health, so you can manage it better and start feeling better.

Remember, this is not a substitute for professional medical care. Always talk to your doctor about issues concerning your health and medical condition.

To learn more about what it’s like to live with PsA and to hear from fellow patients like you, check out The Psoriatic Arthritis Club podcast, available wherever you listen to podcasts or at psoriaticarthritisclub.org.

In our other audio guides, we explained that PsA is a chronic inflammatory disease that can affect your skin and joints as well as cause other symptoms like fatigue. We addressed the fact PsA often needs to be treated with medication to reduce inflammation in order to prevent irreversible joint damage and control other symptoms.

But living a healthy lifestyle is also important in the overall management of your psoriatic arthritis.

This audio guide will provide an overview of how healthy lifestyle changes can impact your PsA management.

First, let’s hear from Dr. Eric Ruderman, a rheumatologist at Northwestern University, about how lifestyle changes fit into your overall PsA treatment plan.

ER – I think a healthy lifestyle is going to help you feel more functional. It isn’t going to control the underlying disease process necessarily. And I think that’s one of the things I do try to stress to people. It isn’t that you can say, “Oh, I’m going to eat better, I’m going to exercise. And that’s going to make this go away.” Because we don’t think it will. It may help control some of the symptoms, and may help control how much it affects you and affects what you do. But it isn’t going to make it go away. And so I really try to encourage people to think of the, you know, that sort of stuff, whether it’s diet or activity, or exercise, as an adjunct to what we’re doing as part of our medical plan. They go together, they’re not, they’re not one or the other. They’re really sort of part and parcel that go together in managing disease.

What’s more, managing PsA with medication that reduces inflammation and disease activity may help you live a healthier lifestyle. When you have less pain and inflammation, you may sleep better and have less fatigue. You may have more energy for physical activity and preparing healthy meals, which, in turn, may help you better manage your PsA.

Here’s how rheumatologist Dr. Grace Wright thinks about it.

GW – It’s important to recognize that when you treat the underlying drivers of inflammation that there are many added benefits. So yes, sometimes depression, the stiffness, the fatigue, the ability to be present at work, the ability to connect with others socially, it’s really hard to maintain that social connectedness, when people are sort of backing away from you, because you’ve got these swollen joints and flaring red skin, and they don’t really understand why that’s the case. So you know, this total approach to care has all of these unintended or intended consequences that are beneficial to patients. It’s about your wholeness as a human being that we want to make sure you’re reconnected, you’re engaged, and you’re able to function well.

The importance of treating the whole patient ties back to how doctors evaluate how well-controlled your PsA symptoms may be and how making healthy lifestyle changes may impact your symptoms. This idea is similar to a clinical assessment measure called minimal disease activity, where rather than looking at one or two symptoms, like just skin symptoms or just joint pain, minimal disease activity takes into account many different aspects of psoriatic arthritis in order to make sure that the condition is getting better across many aspects of the disease.

To assess minimal disease activity, your doctor will ask about or check for tender and swollen joints, whether you have any enthesitis (inflammation of tendons and ligaments), how much of your skin is affected by psoriasis, patient reports of pain, daily function, and how you’re feeling overall. You have to score low in most of these areas in order to be considered to have minimal disease activity.

And making healthy lifestyle changes as part of your treatment plan can be an important part of working to manage your overall health.

Here’s Dr. Alexis Ogdie, a rheumatologist at the University of Pennsylvania, discussing how lifestyle changes can help improve your PsA management.

AO – I cannot overemphasize how important it is to have a healthy lifestyle. And there’s so many reasons why, but I’ll give you a few. So number one is function and how you’re functioning in life is so much more than just your disease. So you have a lot of power to help with your own function. And that’s through exercise, making sure all the muscle groups are working well. A lot of people say that when they first start exercising, they get extraordinarily fatigued and they have more pain, you got to make it over that fence and then regular exercise will actually help keep your functional status up. Number two is diet matters. Patients with psoriatic arthritis have a really high prevalence of obesity. Obesity impacts function, but obesity also impacts the likelihood of your response to therapy. So if you can maintain a healthy weight, you’re much more likely to respond to your therapy. In addition, maintaining healthy mental energy is so important. If you think about just like anything going wrong in your day, if you’re in a good place mentally and emotionally, you’re much more able to deal with that. Well, the same thing is true for psoriatic arthritis. Let’s say you have a flare. If you’re in a good place emotionally, you’re going to be able to deal with that a lot better. Additionally, depression, anxiety and stress cause flares. And they actually increase the disease activity that you’re experiencing, increasing the impact of disease on your life.

So let’s talk about the components of managing PsA with healthy lifestyle changes. It starts with being physically active. It’s always a good idea to talk to your doctor about safe physical activity for you. A mix of aerobic exercise, stretching, and strength training is often recommended, but it needs to be catered to your abilities and level. If it’s been a long time since you’ve been physically active, consider this tip from Dr. Ogdie.

AO – Physical therapy is a great place to start if it feels like too much at first. Water therapy is actually a great place to start because it’s getting into a warm pool where they’re starting to get things moving, and you don’t have the gravity on the rest of your body. So it’s a great place to start if you’re really having a lot of pain. Once you move from water therapy to physical therapy, kind of land physical therapy, they can start working on those different joint muscle groups that need strengthening, and other ones that need stretching.

Another issue is having enough energy for exercise. When you have fatigue, which is very common with PsA, exercise may be the last thing on your mind. But research actually shows that exercise can help manage fatigue.

AO – Aerobic exercise can be really important, that’s counterintuitive to people who are really fatigued. Because you don’t want to go exercise and feel like, initially, it makes you feel worse. But actually, the best demonstrated therapy for fatigue is, or one of them at least, is to go get regular aerobic exercise. And then over time, over the next few weeks, for example, you will start to feel less fatigue. I also say that, with aerobic exercise, you don’t necessarily need to go out there and start with like 20 minutes every day. It could be, if five minutes is causing you a lot of fatigue, start with five minutes or four minutes and then slowly build up over the course of a few weeks. So start slow and increase slowly.

Another component of a healthy lifestyle with PsA is diet. While there’s no one diet that is recommended for psoriatic arthritis, it’s generally a good idea to eat nutritious, well-rounded meals that include fruits and vegetables, beans, nuts and seeds, whole grains, fish, lean meat, and healthy fats like olive oil and that limit sugar and highly processed foods. You may hear this referred to as a Mediterranean diet or an anti-inflammatory diet.

Here’s how a healthy diet can affect your PsA.

AO – So a healthy diet is more than just being good to yourself, but it can help improve your energy levels, and number two, they decrease your risk for heart disease and help you maintain a healthy weight. Having obesity or being obese, or even overweight is associated with poor outcomes for patients with psoriatic arthritis and we want people to maintain a healthy weight so they can respond better to their therapies.

A healthy lifestyle with PsA also means managing stress levels and mental health. This includes having stress-reducing activities in your routine and taking time for self-care. It’s also good to talk to your doctor if you have any concerns about your mental health. They can advise on whether additional treatment, such as seeing a therapist or medication, could be helpful.

AO – So at every visit, I ask about depression and anxiety, and one is because it’s really really common. It’s common in everybody, but it’s particularly common in psoriatic arthritis.

In some cases, people may not even recognize that they are experiencing mental health issues. And your doctor may help you identify that, as Dr. Wright explains.

GW – The first thing that we can do when we have patients who have mental health issues is, number one, assess whether or not they’re even aware that this is a mental health issue. Many patients don’t realize that their behaviors are driven by depression. So the fact that you’re always tired, you’re never able to get out of bed — I may be able to uncover the depression. And even though I’m not an expert in treating the depression, I can refer you to somebody who can help. So you know, again, identifying the behaviors, and getting people number one to accept that mental health is just that. There’s physical health, there’s mental health, there’s emotional health. And this is an area that sometimes we need help with. And there are professionals who can assist with this.

In addition to exercise, diet, and stress and mental health, there are many other components of living a healthy lifestyle with PsA. You may want to try physical or occupational therapy. You can use treatments like heat or ice to manage pain and swelling. You may want to make changes to your routine to help you sleep better, such as having a set bedtime and minimizing your caffeine intake. And, of course, quitting smoking may help improve your PsA and overall health in many different ways.

Keep in mind that you don’t have to make all of these changes at once. Adjusting to life with a chronic disease is a lot. And make sure to partner with your healthcare provider on your PsA patient journey. They are there to help you. The more you tell them about what’s going on, the more they may be able to help.

AO – Patients should feel like they have a doctor who’s partnering with them and listening to them and taking into account what’s important to them. Every patient should have the opportunity to give their treatment goals, to have their treatment goals heard, and have the rheumatologist give them a plan for how to achieve their goals.

Achieving treatment goals often entails a combination of medications and lifestyle adjustments. Here’s an example from Dr. Ogdie of what this partnership could look like.

AO – Let’s say you want to be able to walk two miles, and you’ve only been able to walk around the block. So we should be able to help think through, “well, what do we need to do to do that?” Your knee is inflamed right now, maybe we can do a joint injection to make the knee better. Then we need to get you to physical therapy so you can strengthen the muscles around the knee. And then you need to start slowly increasing your walking. You’re going to do this a little bit every time. And maybe we’ll think about a knee brace to help get that knee more stable because if it’s wobbling while you’re walking, that’s maybe part of the problem. So we should be able to help you think through at a granular level, what can we do to get you to help achieve your goal?

We hope this audio guide has provided helpful information about healthy lifestyle changes for psoriatic arthritis and how lifestyle changes and medication work together to help you manage your condition.

Psoriatic arthritis can be a complex condition to navigate, but remember that there are many effective ways to treat PsA, especially when you partner with your health care providers. You have what it takes to deal with this.

We’d like to thank Dr. Ogdie, Dr. Ruderman, and Dr. Wright for their input and expertise.

Keep listening to our audio guides for more about managing psoriatic arthritis.

For more about what it’s like to live with psoriatic arthritis, check out The Psoriatic Arthritis Club podcast, available wherever you listen to podcasts or at psoriaticarthritisclub.org.

This audio guide was made possible with support from AbbVie.

And for more information about managing PsA and to join a free, worldwide support and advocacy community of PsA patients and their families, visit CreakyJoints.org, which is a part of the nonprofit Global Healthy Living Foundation.