Sponsored: Living with PsA: Julie G and Dr. Bakewell, Part 2

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.

As we learned in the last episode, psoriatic arthritis is a chronic inflammatory disease. It can impact more than just skin and joints. Too much inflammation from psoriatic arthritis can be associated with other symptoms such as fatigue. Over time, ongoing inflammation from PSA can cause irreversible joint damage. This podcast is sponsored by AbbVie. In this episode, the last of this two part series, we've brought back Julie, a contributor to psoriatic-arthritis.com who lives with psoriatic arthritis and rheumatologist Dr. Bakewell. Welcome back, Julie and Dr. Bakewell. Dr. Bakewell, what are some potential treatment goals for those living with psoriatic arthritis?

Dr. Bakewell: So personal goals, especially those related to your quality of life are important to discuss with your rheumatologist. So for example, I have patients who come in and they have very specific life events that are... of course they care about their joint pain and swelling, but they are tying it into these events in their lives. For example, a kid's graduation, the birth of a grand baby, the ability to care for older children where their child is at the hospital, having a baby, they think about family trips going on a cruise, going on a hike with friends. These are the very tangible events in people's lives that when psoriatic arthritis is out of control, they feel not only limited in their ability to do them, but they feel hesitant at times to commit because they're not sure that they're going to be feeling well enough to do these things. And so it's critically important to tell your doctor about them so that they can help work with you to help you reach your goals.

Emily Downward: What kind of tests or measurements do doctors use to monitor the progress that each patient is making on their treatment plan?

Dr. Bakewell: Rheumatologists utilize a strategy called 'treat to target', which is a term that has been coined in rheumatology, starting with rheumatoid arthritis, but has gained in, I'll say popularity in psoriatic arthritis, there's been more and more literature published on the topic. And one of the ways that rheumatologists can assess or use a ‘treat to target’ paradigm is through with this composite measure called minimal disease activity or MDA. MDA is a way that doctors can evaluate how your psoriatic arthritis is doing based on a number of different factors. It's not just assessing one or two symptoms like just skin issues or just joint pain.

Minimal disease activity takes into account many different aspects of psoriatic arthritis in order to assess if the condition is getting better across those 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, which is inflammation in tendons and ligaments, how much of your skin is affected by psoriasis, patient reports of pain, daily function, and how you're feeling overall. A low score in most of these areas is needed in order to be considered to have minimal disease activity.

The MDA is one of these treat-to-target metrics that rheumatologists can use, but there really are many different ways that rheumatologists can assess disease activity. At every visit, patients should have an assessment of their tender and swollen joints. There's also ACR scores, American College of Rheumatology scores. We talk about ACR 20, 50, 70. We can press on these entheseal areas and come up with a score such as the enthesitis index. I've mentioned already the FACIT-F for fatigue. I personally am a big fan of musculoskeletal ultrasound, and that is something that I use in assessing inflammation in my patients on a day to day basis. But we also should add to that inflammation from blood tests, inflammatory markers, such as the segmentation rates, CRP, x-ray and even other advanced imaging techniques like MRI.

Emily Downward: So there's a lot of different ways that you can assess all the different symptoms?

Dr. Bakewell: Yes. And it's highly individualized. I think the main thing is that again, that the doctor listen to the patient, how they're feeling. Ask them about pain, fatigue, when they're hurting, where they're hurting, and then to do a good physical exam at each visit.

Emily Downward: So last time you talked about that there's a difference between flare and disease activity that's not under control. How can people living with psoriatic arthritis differentiate between those two?

Dr. Bakewell: I think the keys are the severity of the flare and the recurrence of flares, AKA, you can treat through one flare. In fact, it's expected that at times the disease will flare, but does it keep coming back? And so looking at those two things, both severity and recurrence is what I take into consideration when I'm evaluating. Do I need to update this patient's treatment plan? So if for example, somebody has a time bound stressor, a big event at work, graduation, finals, and they flare during that time and we can treat through it and it goes away, doesn't come back. I don't necessarily need to change their underlying treatment regimen. However, if it is particularly severe or reoccurs at times absent from these time bound stressors, then that again is another clue that we may need to change medications

Emily Downward: When seeing a rheumatologist, how would you advise the patient to advocate for disease control and ensure that they're reaching their treatment goals?

Dr. Bakewell: So it's important to be prepared to have a conversation with your rheumatologist about how psoriatic arthritis is impacting your life. There are tools and resources that can help you ask the right questions or map out what you want to communicate during your next visit. I want to make sure that patients know that they really need to make sure that they're heard. So it's okay to emphasize and reiterate what you want your doctor to know about your symptoms, goals, and how you're feeling. And then together, you can discuss any changes to or the best treatment plan for you. And it's happened to me, I'll admit, in my own practice.

Somebody comes in and mentions their right shoulder is hurting. And then I get distracted asking about their meds and this, that, and the other thing. And then a couple minutes later, they say, but what about my right shoulder? Do that. Bring it up again. Don't walk out of the office and say, well, I mentioned it to her and she didn't seem to think it was important. No, if it's important to you, it's important to your doctor. Mention it again until you feel like they have spoken to, oh gosh, maybe actually there is really severe underlying joint damage and it would take a complete shoulder arthroplasty replacement to make the pain go away. But at least, you need to have some kind of answer because it's possible, we're human too, and we can get distracted. So bring up and reiterate what is important to you.

And last but not least on the same sort of thread, be a squeaky wheel. So in between appointments, don't feel like you can't reach out to your doctor. You don't want to bother your doctor. That is why we are here. We want to know what is going on with you all the time, not just at appointments. And so if you are hurting or having a flare in between your visits, please call. Please message. We want to know. And that also helps us, again, come up with the best treatment plan for you.

Emily Downward: Those are great tips. Julie, what are your personal goals for managing your psoriatic arthritis?

Julie: So for my goals, I would just like to be able to be a bit more comfortable than I am currently. I recently had a back surgery so my mobility is not where I would like it to be. I would like to be able to get up and down stairs a bit more easily. And I would love to be able to go back to work at some point. I don't know that I'll be able to, but I would love to be able to go back to work.

Emily Downward: When you felt your disease was not under control, how have you advocated for yourself when you talked to your doctor?

Julie: So I have learned over the years to speak up for myself. And I think that when I talked about the example of asking my doctor for a second opinion, that was a prime example of advocating for myself. I've gone into my rheumatologist’s office because I could not get through to them. I was not able to make an appointment, but I was in so much pain. And I drove to her office with tears just pouring down my face and walked inside and said, I have to see her. I have to see somebody. And she wasn't able to see me, but her PA was. And I don't think walking into your rheumatologist’s office is always the best idea, walking in without an appointment, but that's what I had to do.

Emily Downward: It sounds like you were advocating for yourself in that moment, just like you needed to. What advice do you give others living with psoriatic arthritis on how to better advocate for their care?

Julie: I think that learning everything that you can about psoriatic arthritis and not being afraid of the treatment options. Take your doctor's recommendations, do your research, and then make really wise decisions based on the expert's recommendations. My daughter also has psoriatic arthritis and I helped her go through that process of her diagnosis, and then when she started treatment. And watching that process with her has been just really eye-opening to watch her get her diagnosis, and then now that she is a young adult, she is going through treatment and really she has come so far. She's blossomed and knows how to advocate for herself too.

Emily Downward: I'm sure you were a wonderful inspiration for her...

Persistent joint and skin symptoms, as well as other symptoms like fatigue can be a signal that your psoriatic arthritis is uncontrolled. Don't power through the day to day symptoms. You and your rheumatologist can work together to create a treatment plan that's right for you, aimed at helping control PSA symptoms. Dr. Bakewell, why did you choose to pursue rheumatology?

Dr. Bakewell: Oh, that's a great question. Back in the days of my youth. So I was drawn to rheumatology for a number of different reasons. The first is that I knew that I wanted to be able to provide continuity of care for patients. I wanted to be involved in people's lives throughout their lives and not just have isolated points of contact. For example, people who are hospitalists, urgent care physicians, ER, doctors, surgeons, they provide very critical care at points in people's lives when they're very ill, but they don't have that ongoing relationship that I knew that I wanted. So I wanted to have that kind of a specialty, but I also knew that I didn't want to be a primary care doc. I wanted to specialize in something. I really wanted to get to the bottom of a particular subject area and rheumatology, with its focus on immunology, really, really spoke to me.

Emily Downward: What gives you hope about the future of your rheumatology practice?

Dr. Bakewell: I think this is a great time to be a rheumatologist. We have amazing medicines available to us now. I know there are rheumatologists still alive who a mainstay of their treatment was gold infusions, which sounds great. It had a lot of side effects and it maybe didn't work particularly well. I think about how far we come from since that time to where we are now. And I also have hope and excitement around our advancing technologies. So as I mentioned, I'm a big fan of musculoskeletal ultrasound.

It is something that I use in my day-to-day practice, and it really gives me a better insight of what's going on at the level of the joint, tendon or enthesitis. And I can tell you that this is a changing field. So I have hope that we're going to have continued advancements, not only in our diagnosis, our assessment monitoring, but in our treatments as well.

Emily Downward: And what have you learned from being a rheumatologist?

Dr. Bakewell: I have learned that it is a gift to be involved in people's lives. I am blessed every day by the people who walk through my door and trust me with their health and trust me with their treatment regimen and trust me with their personal life stories. I think it's really a gift to be in this position. And I would be so lucky to have my children or other young aspiring rheumatologists follow in these footsteps. I think it's a good place to be.

Emily Downward: Julie, I read on your blog the beautiful letters that you wrote to yourself, to your younger self, and your future self. And it really was so moving because there was such a mix of hope, regret, worry, optimism, and acceptance. What have you learned about living with psoriatic arthritis that you would tell your younger self?

Julie: I would tell myself not to be so afraid of everything. There were so many things that I did not do when I was younger because I was so afraid. And those are things that I wish that I had done while I was physically able to do them.

Emily Downward: What gives you hope for your future self?

Julie: We've come so far. We learn more every day, we've come so far. And I know that things are going to get better for people struggling with psoriatic disease.

Emily Downward: And what advice would you give to others with psoriatic arthritis who are struggling with their symptoms of skin symptoms, joint symptoms, and other symptoms?

Julie: Just do everything that you can to keep the life that you want to have and not the life that you think you've been given.

Emily Downward: Dr. Bakewell and Julie, thank you so much for sharing your story and your information. And it's been so inspirational to listen to, and I know it's going to help a lot of people.

Dr. Bakewell: Thank you for having us.

Julie: It's been a pleasure.

Emily Downward: Your goals matter. Talking to a rheumatologist about treatment goals can be the first step. For helpful resources and how to help manage psoriatic arthritis, visit www.psoriaticarthritisinfo.com. To read more about Julie's story and to 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 1 here