What I 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 may be upon learning that they have psoriatic arthritis. The diagnostic process can be difficult. For many, there can be a delay in the diagnosis of this disease of between 6 months and 2 years or even more. One study found that more than half of patients with psoriatic arthritis had a delay in diagnosis of more than 2 years. It is often more difficult to get a timely diagnosis when you are younger at the time your symptoms begin.

One of the reasons for the delay is that when symptoms first appear, they may be at a subclinical level. Maybe you still had joint pain but not joint inflammation (synovitis). 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 may also have no other evidence of arthritis. 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 presents challenges. I think perhaps the most challenging aspect of psoriatic arthritis is that there are multiple disease domains. As with other forms of arthritis, it can cause peripheral joints to become painful, swollen, and warm to the touch. But psoriatic arthritis is also more likely than other types of arthritis to affect the back. You may have painful swelling in the joints between the vertebrae.

You may have inflammation of the entheses, which are the places where tendons and ligaments attach to the 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 problems related to inflammation that affects many different parts of the body.

Establishment of treatment priorities

Because you may be dealing with a myriad of symptoms and associated challenges, it can be difficult with the help of your doctor to prioritize what is most important to you and treat it. A patient may say that they are more bothered by symptoms in one domain than in another and we don’t necessarily have a medicine or a clear way to treat everything. A drug can be really good for psoriasis, but it only helps a little with arthritis. You may decide to take it and then add additional therapies.

If psoriasis bothers you more than arthritis or vice versa, you should take that into account when making treatment decisions. You may have to make difficult decisions about what is most important to your quality of life. At the same time, you also need to think ahead about the increased risk of cardiovascular disease or other conditions. You’ll need to treat the inflammation to reduce those other risks in the long run.

Tiredness and mood swings

In addition to the symptoms that everyone thinks of with psoriatic arthritis, there may be others. Patients often have a lot of fatigue, although this is not true for all patients. It’s hard to say how common it is. I talk a lot with patients about ways other than medication to help them feel better. To help with fatigue, it may be helpful to consider mental health, sleep, proper nutrition, and exercise.

It is definitely important to also check for low mood or mood swings. Depression is common in this disease. It is also common with extensive psoriasis. That makes psoriatic arthritis different from other rheumatologic conditions. Partnering with primary care physicians and specialists in behavioral health, sleep, exercise or nutrition can help. Also consider stress reduction approaches such as mindfulness and meditation.

risk of infection

In addition to the symptoms of psoriatic arthritis, you may also experience or need to consider side effects of treatment. In general, what we rheumatologists are most concerned about is an increased risk of infection from medications that weaken your immune system. You can take steps to prevent infection by getting the necessary vaccinations. Your doctor may recommend latent tuberculosis (TB) screening tests. It is also recommended to get screened for skin cancer once a year.

Keep in mind that most of the infections we see are not necessarily worrisome, although they can still be frustrating. If you normally have a cold once a year and you are starting immunotherapy, you can expect two colds a year. But it’s also possible that 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 any concerns.

weigh your options

I don’t often see people with psoriatic arthritis who are on treatment get worse over time. But if it gets worse, or if you feel like the treatment isn’t working, you may want to consider trying something else. It’s great that we now have a variety of drugs 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 whether treatment is not working as well as you would like and what is most important to you from a quality of life standpoint.

In making these decisions, I recommend that anyone with a diagnosis of psoriatic arthritis see a rheumatologist. You should also see a dermatologist for psoriasis. If you have uveitis, you will also see an ophthalmologist. Most of the time, a primary care physician will refer us and we, in turn, can refer to other specialists. At some academic centers, you may be able to go to a clinic where you can see a dermatologist and a rheumatologist at the same time. That way, we can discuss the options right there and practice shared decision-making about what’s next.

Managing psoriatic arthritis like any chronic condition takes 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 return within the first month. I will review the blood work for signs of safety issues with kidney and liver function. Then, depending on how well your treatment is going, you 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 overcome challenges and help you with any issues and frustrations as they arise over time.