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Patient perspectives: living with psoriatic arthritis

Updated on October 16, 2024

Watch rheumatologist Dr. Husni lead a discussion about living with psoriatic arthritis.

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Transcript

00:00
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.
00:07
[MUSIC PLAYING] Hi, everyone. I'm Dr. Elaine Husni.
00:14
I'm vice chair of the Department of Rheumatology at the Cleveland Clinic. And today, I am joined by three psoriatic arthritis patients
00:23
who are willing to talk a lot about their experiences from beginning to end. So I'd like to introduce Aimee, Elizabeth, and Jim.
00:34
Hi. I'm Aimee. I am from Los Angeles. And I've had psoriatic arthritis for about 11 years.
00:41
I'm Elizabeth. And I've had psoriatic arthritis for approximately three and a half, four years now.
00:48
My name is Jim. I live in upstate New York in Goshen. And I've been living with psoriatic arthritis
00:55
since about 2012 is when I was diagnosed. Great. Great. So you guys are going to give really great perspectives.
01:02
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
01:09
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.
01:19
I lost like 60, 70 pounds during the pandemic. And I will say it definitely has improved the pain level
01:26
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.
01:33
I, for sure, at one point when this first started, I was like, OK, it's my diet. Let's go get a juicer.
01:39
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.
01:46
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.
01:54
But most of the information that I got, because I did not have a rheumatologist initially, was from social media.
02:00
I-- I've tried dieting a little bit. I was able to get off some-- some medications. And I lost some weight.
02:07
That helps a lot, just taking a little bit of stress off of the knees. So we are, you know, very mindful
02:15
that, you know, certain drugs work better when your BMI or your weight is more normal. You know, we have stats on that.
02:21
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.
02:30
But we do know that, you know, decreasing, you know, the processed foods and eating nutrient dense foods
02:36
are only positives. So whether or not we have a certain diet that we can recommend, I think we still need more research.
02:42
You know, you remember before you went into your first office visit, or you thought something was wrong with your skin or your joints.
02:48
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.
02:55
If I were to run into somebody, and they were just diagnosed, I would say, look, go to the store.
03:01
Get some hot and cold rubs. Get a heating pad. Keep that stuff with you.
03:08
Put it in your backpack, in your jacket, whatever's with you, all the time, because you're going to need it.
03:15
Definitely keep up, even though it hurts, keep up moving. Don't overdo it. There has to be a happy medium.
03:21
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.
03:29
When I talk to other patients, I definitely have to tell them and remind them that their health is their responsibility.
03:35
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.
03:44
Or research, you know, new medications, or treatments, or, you know, lifestyle things that I think might help,
03:51
but I'm not sure. If something is not-- if that's not what you envision for your life, like, let your doctor know,
03:58
so that you guys can be on the same team. [MUSIC PLAYING]

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