Patient Perspectives: Living with psoriatic arthritis

When I talk to other patients, I definitely have to tell them and remind them that their health is their responsibility. And they have to be their number one advocate.

[MUSIC PLAYING] Hi, everyone. I'm Dr. Elaine Husni.

I'm vice chair of the Department of Rheumatology at the Cleveland Clinic. And today, I am joined by three psoriatic arthritis patients

who are willing to talk a lot about their experiences from beginning to end. So I'd like to introduce Aimee, Elizabeth, and Jim.

Hi. I'm Aimee. I am from Los Angeles. And I've had psoriatic arthritis for about 11 years.

I'm Elizabeth. And I've had psoriatic arthritis for approximately three and a half, four years now.

My name is Jim. I live in upstate New York in Goshen. And I've been living with psoriatic arthritis

since about 2012 is when I was diagnosed. Great. Great. So you guys are going to give really great perspectives.

Have you ever thought of, you know, more of the wellness aspects and looking at lifestyle changes? You know, I think it's just as important

as when you're trying to learn about a biologic that you learn about, you know, the wellness strategies that do work. I mean, honestly, this last year I lost so much weight.

I lost like 60, 70 pounds during the pandemic. And I will say it definitely has improved the pain level

and, like, the-- even the fatigue of it all. And then, just making sure that I actually, even if I'm in pain, I get some physical activity in.

I, for sure, at one point when this first started, I was like, OK, it's my diet. Let's go get a juicer.

I'm going to juice everything, and I'm going to be OK. That didn't work. So I'm like, OK, that's not it.

So you know, I went from that to continued the meds, so that I can function. But-- And I continue to work out and things like that.

But most of the information that I got, because I did not have a rheumatologist initially, was from social media.

I-- I've tried dieting a little bit. I was able to get off some-- some medications. And I lost some weight.

That helps a lot, just taking a little bit of stress off of the knees. So we are, you know, very mindful

that, you know, certain drugs work better when your BMI or your weight is more normal. You know, we have stats on that.

And people need to understand that. There are, unfortunately, wellness strategies that are not as well studied. You know, so things like diet is probably not as clear cut.

But we do know that, you know, decreasing, you know, the processed foods and eating nutrient dense foods

are only positives. So whether or not we have a certain diet that we can recommend, I think we still need more research.

You know, you remember before you went into your first office visit, or you thought something was wrong with your skin or your joints.

I'd love to hear what advice you have to give, you know, a patient that's just starting on that journey and just making that appointment.

If I were to run into somebody, and they were just diagnosed, I would say, look, go to the store.

Get some hot and cold rubs. Get a heating pad. Keep that stuff with you.

Put it in your backpack, in your jacket, whatever's with you, all the time, because you're going to need it.

Definitely keep up, even though it hurts, keep up moving. Don't overdo it. There has to be a happy medium.

But you definitely want to keep moving, because if you don't, it seems to get worse. That was something that I really wish that I knew.

When I talk to other patients, I definitely have to tell them and remind them that their health is their responsibility.

And they have to be their number one advocate. They need to do some research. They need to-- like, I am not embarrassed to have a list of questions for my doctor if I'm confused.

Or research, you know, new medications, or treatments, or, you know, lifestyle things that I think might help,

but I'm not sure. If something is not-- if that's not what you envision for your life, like, let your doctor know,

so that you guys can be on the same team. [MUSIC PLAYING]