ER – Dr. Eric Ruderman

GW – Dr. Grace Wright

AO – Dr. Alexis Ogdie

Welcome to this Patient Audio Guide about psoriatic arthritis symptoms. 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 psoriatic arthritis for a while, but you’re experiencing new symptoms or are concerned that it’s getting worse.

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

Let’s start by making sure we explain exactly what psoriatic arthritis is. PsA is a chronic inflammatory disease that can affect both your skin and your joints.

Psoriatic arthritis is different from other forms of arthritis, like osteoarthritis, which happens because of wear and tear to a joint over time.

When we say that PsA is “inflammatory,” it means that there is an abnormal response of your immune system. Your immune system is normally responsible for identifying germs and other foreign substances, but in PsA, the immune system starts attacking your own healthy tissues and cells, specifically the joints and the skin.

This is important to understand for two reasons.

One, because in order to treat PsA, doctors need to use medications that target and reduce that inflammatory response. Two, inflammation can cause irreversible damage to your joints if it is not treated, which can impact your mobility and physical function. This is why finding the right PsA treatment plan is so important.

When we talk about psoriatic arthritis symptoms, one of the first things to understand is the relationship between psoriasis and psoriatic arthritis. Psoriasis is an inflammatory skin disease that can cause a rash, or thick, red skin, or flaky, silver-white scaly patches. Skin can also itch and be painful.

Psoriatic arthritis is an inflammatory disease that can affect both your skin and your joints.

Here is more about the connection between psoriasis and PsA from Dr. Alexis Ogdie, a rheumatologist at the University of Pennsylvania.

AO – Most patients who develop psoriatic arthritis have had psoriasis for some period of time. Let’s say somewhere on average, between five and 10 years they’ve had the psoriasis, and then they develop the joint pain and swelling. But there are a fair number of people that actually develop them within the same year, and then there’s fewer patients that develop the inflammatory arthritis first, and then they later develop the psoriasis. But at any one point in time, the psoriasis may be bad, and the joints mild, or vice versa. The joints may be bad, and the skin mild, so they’re not really connected on a day-to-day basis, let’s say.

So most people with psoriatic arthritis have psoriasis first, then develop arthritis symptoms like joint pain and swelling.

But PsA is much more than just skin issues and joint issues. It’s important to be aware of all the different symptoms of psoriatic arthritis, because they can affect each patient so differently.

Here’s an overview of how patients tend to come in with PsA, from Dr. Eric Ruderman, a rheumatologist at Northwestern University.

ER – People present with a lot of different things, so they can talk to you about, they tell me their pain in their joints, they have stiffness in their joints, they have swelling in their joints, and it can be a lot of different joints, sometimes it’s many, sometimes it’s just a few joints. They may have pain at places where tendons attach to bone, or we call it enthesitis. That’s usually around a joint, but other places as well, that might be things like tennis elbow pain, or a bursitis, or plantar fasciitis or Achilles tendonitis, those are the kinds of things that people may complain about. Their skin may be active, and even nails are an important thing. So people with psoriatic arthritis have a much higher incidence of having nail changes, the kind of nail, fingernail and toenail changes that you see in psoriasis.

Let’s just spend a minute going over the many different symptoms of psoriatic arthritis. First, there’s joint issues: tender, painful, swollen, and stiff joints. Commonly affected areas include the fingers, toes, ankles, and knees. The pain tends to be worse in the morning or after long periods of rest or inactivity.

The lower back is another area that can be affected by psoriatic arthritis, due to inflammation of the spine and sacroiliac joints, where your spine meets your pelvis.

Then there is psoriasis, or psoriatic plaques, on the skin. There are many different ways psoriasis can present, but it often shows up as thick red skin with silvery-white patches. However, keep in mind that psoriasis can look different in different skin tones. It may look more purplish or grayish on darker skin.

Sometimes there is foot, ankle, heel, or elbow pain in PsA that is due to something called enthesitis, which is inflammation of the tendons and ligaments that attach to your bones. You may think you have tennis elbow or Achilles tendinitis when, in fact, it could be a form of psoriatic arthritis.

PsA can affect your fingers and toes in other ways, by causing swelling of the entire digit. This is called dactylitis. It’s sometimes referred to as “sausage fingers” or “sausage toes.” If you have this, taking rings on and off can be challenging. Wearing certain shoes could be uncomfortable.

Your nails may experience changes, such as pitting, where they look like the surface of a golf ball, or look thickened or start to separate from the nail bed.

Psoriatic arthritis can also cause fatigue and make you feel tired and run down, which can be very debilitating.

If all of this sounds like a lot to handle, well, it is. Here’s Dr. Ogdie’s take on this.

AO – That is a lot for patients to deal with. And not everybody has all the features. And in fact, this is what we call this a very heterogeneous disease, meaning there’s just so many different forms of it. So you can have any one of those different things.

The fact that PsA can take so many forms is really important when it comes to figuring out the right treatment plan. We’ll get into this more in future audio guides, but consider this perspective from Dr. Ruderman.

ER – When you think about all the different aspects of disease, and you sort of think about people as a whole person, and everything that goes into it, it becomes really helpful as you start to talk through the treatment options. As we think about what kinds of therapies, what kinds of treatments we might offer. So for example, you know, somebody who has bad psoriasis, bad skin disease, light treatments, phototherapy might be very helpful for them. That’s not going to do anything for their joint symptoms. And so if they have skin disease, and no joint disease, that might be great. But if they have a lot of arthritis, then maybe we need to think about something else that’s going to address both aspects of their disease. And so instead of being on one thing for your skin, and another thing for your joints, and something else for your nails, you could maybe find a single therapy that might address all of that.

Being aware of and being able to explain all the ways your psoriatic arthritis symptoms are affecting you is key to partnering with your doctor on your care. Here’s why.

ER – I need to know what’s going on. I have people who have, you know, who have a lot of trouble with their joints, but not trouble with their skin, or vice versa. And unless I know that, unless we talk about that, we can’t really make appropriate decisions on how to manage their disease because I need to know what’s bothering them, what gets in the way.

Don’t be afraid to get specific about all the ways, big and small, that your PsA may be affecting you. Here’s rheumatologist Dr. Grace Wright explaining what she wants her patients to tell her.

GW – I want them to tell me what matters. So if your skin is driving you nuts, let’s talk about that. If the swollen pudgy digit is driving you nuts, let’s talk about that. And I have patients who have dactylitis, they go, “huh, I have a bigger ring. It’s not a big deal.” But for others, that’s not the case. So I need to know what matters to you. I need to know if you’re sleeping, if you’re in pain, if you’re depressed, if the skin that’s not obvious to everybody is really what’s affected. I’ve had patients, when they take off their clothing, their entire back is covered in psoriasis. They’re the only ones who are aware and nobody sees it on the outside, but they suffer because it’s their back, right? So we need to see those hidden areas and when they talk about what can we do to target those areas that matter to them.

The fact that PsA is so heterogeneous means that doctors and patients need to look at a variety of factors to understand how the disease is doing and whether it’s getting better on a given treatment plan. There is a measure that we are hearing more about, which is known as minimal disease activity, which is becoming more widely recognized.

If you have PsA, you should start to learn about it.

Minimal disease activity 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 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.

Here’s Dr. Wright’s take.

GW – When we treat a patient, we treat them holistically, so that we don’t just treat the joints or just treat the skin, we want to treat across all the different areas in which psoriatic arthritis affects them. So that I’m getting all of you under control, not just one part of you under really good control and ignoring the other components. So this really is saying this is a more holistic approach to taking care of a patient.

We hope this audio guide has provided helpful information about the range of symptoms you can experience with psoriatic arthritis, the importance of talking to your doctor about all of your symptoms in order to help improve your care, and how doctors and patients can use an evaluation measure like minimal disease activity to assess if your PsA symptoms are getting better across the board.

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.