By Dr. Rachel Stovall, narrated by Kendall Morgan
People with psoriatic arthritis face many challenges. The first may be that they have psoriatic arthritis. The diagnostic process can be difficult. For many, the delay in diagnosis of this disease can be anywhere from 6 months to 2 years or even longer. One study found that more than half of patients with psoriatic arthritis had a delay in diagnosis of more than 2 years. It tends to be harder to diagnose in time when you are younger when symptoms start.
One reason for the delay is that when symptoms first appear, they may be at a subclinical level. You may have had joint pain but not yet had joint inflammation (synovitis). It is not uncommon for a person to present with psoriasis and joint pain and we may not immediately see signs of joint inflammation. They may also have no other evidence of arthritis. Sometimes we will have to follow them over time, and then the diagnosis becomes clearer.
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 many domains of the disease. As with other forms of arthritis, it can cause your peripheral joints to be 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 insert into bones. You may also have dactylitis, or inflammation of the entire toe 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 range of inflammation-related problems that affect different parts of the body.
Establishing treatment priorities
Because you may be dealing with a whole range of symptoms and related challenges, it can be difficult to prioritize what’s most important to you and treat it with your doctor’s help. A patient may say that they are more bothered by symptoms in one domain over another, and we don’t necessarily have one drug or a clear way to treat them all. One drug may be really helpful for psoriasis, but only somewhat helpful for arthritis. You may decide to take it and then add an additional treatment.
If you are more concerned about psoriasis than arthritis or vice versa, you should consider this when making treatment decisions. You may have to make tough decisions about what is most important to your quality of life. At the same time, you should also consider an increased risk of cardiovascular disease or other conditions. You’ll want to treat the inflammation to reduce those other long-term risks.
Fatigue and mood swings
In addition to the symptoms that everyone thinks of with psoriatic arthritis, there may be others. Patients often experience great fatigue, although this is not the case for every patient. How common it is is hard to say. I talk a lot with patients about ways other than medication to help them feel better. Considering mental health, sleep, adequate nutrition and exercise can help combat fatigue.
Of course, it’s also important to check for mood swings or mood swings. Depression is common in this disease. It is also common in extensive psoriasis. This makes psoriatic arthritis different from other rheumatological conditions. Collaboration with primary care physicians and behavioral health, sleep, exercise, or nutrition specialists can help. Also consider stress reduction approaches such as mindfulness and meditation.
Risk of infection
In addition to psoriatic arthritis symptoms, you may also experience or need to consider treatment side effects. In general, what we as rheumatologists are most concerned about is the increased risk of infection from medications that suppress your immune system. You can take steps to prevent infection by getting the necessary vaccines. Your doctor may recommend screening for latent tuberculosis (TB). Getting screened for skin cancer once a year is also recommended.
Keep in mind that most of the infections we see aren’t necessarily bothersome, although they can still be frustrating. If you usually get a cold once a year and start immunotherapy, you can expect to get two colds a year. But it’s also possible that you could get pneumonia, severe COVID-19, or another more serious condition. It’s good to be aware of this risk and let your doctor know if you have concerns.
Drag your options
I don’t usually see people with psoriatic arthritis who are on treatment getting worse over time. But if you’re getting worse or feel like the treatment isn’t working, you might want to consider 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 is not working as well as you would like, and what is most important to you in terms of quality of life.
To make these decisions, I recommend that anyone diagnosed with psoriatic arthritis see a rheumatologist. You should also see a dermatologist for psoriasis. If you have uveitis, you should also see an ophthalmologist. Most often, the primary care physician refers to us, and we may refer to other specialists. In some academic centers, you can attend a clinic where you can see a dermatologist and a rheumatologist at the same time. That way we can talk through options together and practically make joint decisions about what’s next.
Managing psoriatic arthritis, like any chronic disease, 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 within the first month. I will check blood tests to look for any signs of safety concerns with kidney and liver function. Then, depending on how well they are healing, I may see them about every 3 months. Treating psoriatic arthritis can be difficult, and it’s important that you have a doctor you trust who can handle the challenges and help you through any problems and frustrations that arise over time.