What I’ve Learned From My Patients About the Challenges of Psoriatic Arthritis

By Rachael Stovall, MD, as told to Kendall Morgan

People with psoriatic arthritis face many challenges. The first one may be in learning that they have psoriatic arthritis. The diagnosis process can be difficult. For many, there may be a delay to diagnosis in this disease of anywhere from 6 months to 2 years or even longer. One study found that more than half of psoriatic arthritis patients had a diagnostic delay of more than 2 years. It tends to be harder to get a timely diagnosis when you are younger at the time symptoms start. 

One reason for the delay is that when symptoms first arise, they may be at a subclinical level. Perhaps you had joint pain but not joint inflammation (synovitis) yet. It’s not uncommon for a person with psoriasis and joint pain to come in and we may not immediately see signs of inflammation in the joints. They might not have other evidence of arthritis either. Sometimes we may have to follow them over time and then the diagnosis becomes clearer. 

Varied Symptoms

Once the diagnosis is known and treatment begins, this disease still comes with challenges. I think perhaps the most challenging aspect of psoriatic arthritis is that there are multiple domains of the disease. As in other forms of arthritis, it can cause your peripheral joints to become painful, swollen, and warm to the touch. But psoriatic arthritis is also more likely than other types of arthritis to involve your back. You may have painful inflammation in the joints between your vertebrae. 

You may have inflammation of the entheses, which are the places where tendons and ligaments are inserting into bone. You may also have dactylitis or inflammation of an entire finger or toe. You may have eye pain, redness, and inflammation (uveitis). You may have psoriasis, nail changes, or even inflammatory bowel disease (IBD). You get the idea. People with psoriatic arthritis often have a whole constellation of issues all related to inflammation that affect many different parts of the body.

Setting Treatment Priorities

Because you may be dealing with a whole host of symptoms and associated challenges, it can be difficult to prioritize with your doctor’s help what’s most important to you and treat that. A patient may say they’re more bothered by symptoms in one domain versus another and we don’t necessarily have one drug or a clear way to treat it all. One medicine may be really good for psoriasis but only help somewhat with arthritis. You may decide to take it and then add extra therapies. 

If you are more bothered by psoriasis than arthritis or vice versa, you’ll need to take that into account when making treatment decisions. You may have to make tough decisions about what’s most important for your quality of life. At the same time, you also have to think down the line about the increased risk of cardiovascular disease or other conditions. You’ll want to treat the inflammation to lower those other long-term risks. 

Fatigue and Mood Changes

In addition to the symptoms everyone thinks about with psoriatic arthritis, there can be others. Patients often have a lot of fatigue, although this isn’t true of every patient. It’s hard to say how common it is. I do talk to patients a lot about other ways in addition to medications to help them feel better. To help with fatigue, it may help to consider mental health, sleep, adequate nutrition, and exercise. 

It’s definitely important also to check in about low mood or mood changes. Depression is common in this disease. It’s also common with extensive psoriasis. That makes psoriatic arthritis different than some other rheumatology conditions. Partnering with primary care doctors and specialists in behavioral health, sleep, exercise, or nutrition can help. Consider also approaches to stress reduction such as mindfulness and meditation. 

Infection Risk

In addition to symptoms of psoriatic arthritis, you may also experience or need to consider the side effects of treatment. In general, the thing we as rheumatologists worry about most is an increased risk of infection from medications that lower your immune system. You can take steps to prevent infection by getting any needed vaccines. Your doctor may recommend screening for latent tuberculosis (TB). It’s also recommended to get a skin cancer screening once a year. 

Keep in mind that most of the infections we see are not necessarily worrisome, although they may still be frustrating. If you normally have a cold once a year and you’re starting on immunotherapy, you might expect two colds a year. But it’s also possible you could get pneumonia, severe COVID-19, or some other more serious condition. It’s good to be aware of this risk and let your doctor know if you have concerns.

Weigh Your Options

I don’t usually see people with psoriatic arthritis who are in treatment worsening over time. But if you were to get worse or feel like treatment isn’t working, you may consider trying something else. It’s great that we now have a variety of medications that work in different ways. If one therapy doesn’t work, we have other options. It may depend on which domain of your disease is active if treatment isn’t working as well as you’d like and what’s most important to you from a quality-of-life standpoint.

To make these decisions, I recommend anyone with a psoriatic arthritis diagnosis see a rheumatologist. You should also see a dermatologist for psoriasis. If you have uveitis, you’ll see an ophthalmologist, too. Most often, a primary care doctor would refer to us and we may in turn refer to other specialists. At some academic centers, you might be able to attend a clinic where you can see a dermatologist and rheumatologist at the same time. That way we can talk through options right there together and practice shared decision-making about what’s next. 

Managing psoriatic arthritis like any chronic condition does take time. You should expect to see your doctor regularly, especially if you have a new diagnosis and are just starting therapy. I usually like to see patients back within the first month. I’ll check blood tests to look for signs of any safety concerns with kidney and liver function. Then, depending on how well they are doing with treatment, I might see them every 3 months or so. Treating psoriatic arthritis can be complex, and it’s important that you have a doctor you trust who can work through the challenges and help you with any issues and frustrations as they arise over time.