Credit: Tatiana Ayazo

Face it: There is a lot of health-related misinformation out there, particularly when it comes to chronic inflammatory illnesses like psoriatic arthritis. Some myths about psoriatic arthritis (PsA) exist because of stereotypes surrounding the disease, like the idea that arthritis only affects older people. Others exist because the symptoms that accompany psoriatic arthritis, like joint stiffness and skin rashes, accompany other illnesses as well, making it confusing when trying to figure out what you’re actually dealing with.

Despite the efforts of medical professionals and health advocates to better educate people on PsA, some myths and misconceptions persist. Not only is this frustrating to those who know better, like health care professionals and patients, but it can be harmful to those who don’t know better, like someone who is wondering whether they could have PsA, is newly diagnosed with psoriatic arthritis, or someone who act as a caregiver for a patient. Such myths could prevent someone who is unfamiliar with PsA from being diagnosed and receiving treatment in a timely manner, for example; or discourage them from trying effective treatments.

In order to successfully diagnose and mange this rheumatic disease, we have to stop the spread of misinformation. Unfortunately, shutting down the internet is not an option. So instead, we spoke to two rheumatologists to help separate the PsA fact from fiction.

Below, CreakyJoints clears up some common psoriatic arthritis myths that can be harmful to patients.

Myth: You must have psoriasis to have PsA

Fact: Psoriatic arthritis can sometimes occur without the skin rash

According to the Mayo Clinic, having psoriasis, which is an autoimmune skin disease, is the single greatest risk factor for developing psoriatic arthritis (PsA). But Nilanjana Bose, MD, MBA, a rheumatologist at the Rheumatology Center of Houston in Texas, says you can have PsA without developing skin psoriasis — and, of course, vice versa. (Research published in the Journal of the American Academy of Dermatology says only 10 to 30 percent of people with psoriasis develop psoriatic arthritis.)

Here’s where the misconception may stem from: Both psoriasis and psoriatic arthritis are chronic inflammatory diseases. They occur when the body’s immune system mistakenly attacks healthy tissue. With psoriasis, the immune system malfunction causes inflammation that triggers skin cells to regenerate much faster than normal, which can result in thick, red, scaly patches called plaques, as well as other types of rashes. In psoriatic arthritis, that same type of abnormal immune response causes inflammation in your joints, which can lead to joint pain, stiffness, and swelling.

If you develop joint symptoms without skin symptoms, this can lead to delays in getting diagnosed with PsA because doctors may not suspect psoriatic arthritis without the presence of psoriasis. It’s also possible that someone has had psoriasis in the past, presently has a very mild case, or has psoriasis but is not diagnosed with it — it could be mistaken for acne, eczema, or another skin issue. In these situations, PsA may also be less likely to be suspected and diagnosed.

Keep in mind that psoriatic arthritis is not just “psoriasis plaques” plus “arthritis joint pain and swelling.” There are some other telltale symptoms that could clue a doctor in to PsA — such as dactylitis, enthesitis, and nail changes. We’ll address more of this below.

Myth: If you have psoriasis and PsA, skin problems will always show before joint issues

Fact: Joint problems can begin before skin symptoms appear

The majority of people with PsA do develop psoriasis first and are later diagnosed with psoriatic arthritis. But not always. Up to 15 percent of patients experience joint symptoms before plaques, according to the Cleveland Clinic.

For those who do begin with a diagnosis of psoriasis, it can take an average of seven years to develop joint symptoms, says Erin Bauer, MD, a rheumatologist at Virginia Mason Medical Center in Washington.

In some situations, people with PsA may experience symptoms of joint pain and stiffness related to PsA for longer than they realize. For example, in addition to causing symptoms in peripheral joints like the ankles, knees, and hands, PsA also commonly affects the sacroiliac joints (where the spine meets the pelvis) and joints in the spine. People who experience back pain and stiffness may chalk it up to a mechanical problem, like from overdoing it at the gym or yardwork, and not realize it could be due to PsA-related inflammation.

Myth: Psoriatic arthritis is an old person problem

Fact: You can get PsA at any age

Most people are diagnosed with psoriatic arthritis between the ages 30 and 50, but psoriatic arthritis can begin as early as childhood. Children of parents with psoriasis are three times more likely to have psoriasis themselves and are at greater risk for developing psoriatic arthritis, according to the Cleveland Clinic.

People who are diagnosed with PsA often hear phrases like, “but you’re too young to have arthritis,” which can be very frustrating, says Lauren Gelman, Director of Editorial Services for CreakyJoints and the Global Healthy Living Foundation. “It’s important to increase awareness — especially for caregivers and family and friends of people living with PsA — that the joint pain, stiffness, swelling, and many other symptoms that go along with PsA can have a huge impact on patients’ quality of life and daily function,” she says. “The perception that arthritis-type symptoms only affect older adults is especially harmful to people who develop PsA at a younger age and feel like they don’t have the support or empathy as they struggle with its impact on their ability to work, parent, socialize, and more.”

Myth: Psoriatic arthritis mainly affects the joints and skin

Fact: PsA may also impact your eyes, GI tract, heart, mood, and much

In addition to psoriasis skin issues, joint pain, stiffness, and swelling are the main, and most obvious, symptoms of psoriatic arthritis. But there are a host of other ways PsA can affect your body and mind.

“Patients should be aware of all the ways PsA can affect them physically, mentally, and emotionally because it can help them understand why they may feel so debilitated,” says Gelman. “Being prepared for the head-to-toe toll the condition can take can encourage you to get necessary self-care, ask others for help, and to give yourself some slack.”

Let’s start with specific ways PsA affects the body compared to other common forms of inflammatory arthritis. PsA has some unique characteristics that separate it from, say, rheumatoid arthritis. You may experience dactylitis, which is when your fingers and toes swell to the point that they look like swollen sausages. Your fingernails and toenails may also become pitted and deformed.

Another common issue is enthesitis, which is inflammation of tendons and ligaments. This can cause issues like tennis elbow, Achilles tendonitis, or plantar fasciitis. It’s common for people who are diagnosed with PsA to experience enthesitis but not realize that it’s connected to their PsA.

PsA can also cause a painful form of eye inflammation called uveitis, where your eyes redden and vision blurs. Inflammatory bowel disease, such as Crohn’s disease and ulcerative colitis, is another condition that co-occurs with PsA.

The systemic inflammation in psoriatic arthritis may also increase your risk of cardiovascular disease, diabetes, and other conditions.

PsA is also associated with mood and mental health issues. Fatigue is a very common issue in PsA; it’s much more than simply being tired, but a medical symptom that is related to many different factors, including underlying inflammation. Nearly 50 percent of patients with psoriatic arthritis report high levels of fatigue (five or higher on a 10-point scale) — and consider fatigue a high-ranking problem, after joint pain and before skin issues, according to a 2016 study published in the journal Joint Bone Spine.

Depression and anxiety are also common in people with PsA. A 2020 study published in the journal Seminars in Arthritis and Rheumatism found that the prevalence of anxiety and depression in people with PsA is significantly greater than those without psoriatic arthritis.

Another truth about psoriatic arthritis symptoms: They can vary a lot from patient to patient and even in how they affect you on a daily basis or over time. PsA can affect joints on just one side or on both sides of your body. Symptoms may be gradual and subtle for some and sudden and dramatic in others. They tend to flare and subside, and even change locations in the same person over time.

It is important to keep track of your symptoms and report and changes to your health care provider.

Myth: One simple test can confirm you have PsA

Fact: There is no single test for PsA, and diagnosis is not simple

In order to be diagnosed with PsA, your doctor will consider your medical history, symptoms, and physical exam. They may also use imaging and lab tests to help rule out other types of arthritis. X-rays, for example, can pinpoint changes in joints typically seen in psoriatic arthritis, while certain blood and fluid tests may help distinguish PsA from conditions like rheumatoid arthritis or gout.

Read more here about how PsA is diagnosed.

Myth: You’ll inevitably need surgery for PsA

Fact: Severe joint damage is often avoidable

The purpose of joint surgery is to restore function, relieve pain, and improve movement or appearance of severely damaged joints. But Dr. Bauer says it’s pretty rare for psoriatic arthritis patients to require this type of surgery, especially if they’ve been diagnosed with the disease early on. Although persistent inflammation from psoriatic arthritis can lead to irreversible joint damage, the right PsA treatment plan can ease pain and control inflammation to help prevent progressive joint involvement and damage.

If psoriatic arthritis is left untreated or treatment is delayed, however, joint damage may be more likely, says Dr. Bose. And once damage is done, particularly in the form of joint erosions, Dr. Bauer says your doctor may recommend joint surgery.

A small percentage of people with PsA develop a severe, deforming, and disabling type of arthritis called arthritis mutilans, which destroys the small bones in the hands and feet. This type of arthritis may require a joint fusion surgery, but it is extremely rare, affecting only 1 to 5 percent of patients, according to Medscape.

The key message is that you can avoid joint damage and other PsA complications by working with your doctor to get inflammation under control. Your doctor may discuss with you a measure called minimal disease activity, which is a way how doctors evaluate how your PsA is doing by assessing a number of different factors, such as the number of tender and swollen joints, the amount skin affected by psoriasis, the number of places affected by enthesitis, and more. Aiming to get to minimal disease activity may help reduce your risk of long-term complications with PsA.

Myth: Taking NSAIDs every day is okay for psoriatic arthritis patients

Fact: Long-term use of non-steroidal anti-inflammatory drugs comes with risks

Non-steroidal anti-inflammatory drugs, or NSAIDs, help relieve pain and reduce inflammation locally, but they do not stop disease progression or treat the systemic inflammation that is driving PsA. Many are available over the counter, like ibuprofen (Motrin or Advil) and naproxen sodium (Aleve), but stronger versions require a prescription. NSAIDs are often used an initial treatment for mild cases of psoriatic arthritis but prolonged use, especially in high doses, comes with side effects and risks.

“More and more we are learning there are long-term, and even short-term, complications of [prolonged] NSAID use,” says Dr. Bauer, who adds that they can affect the stomach and kidneys, and increase your chance of heart attack and stroke.

There are many different classes of medications used to treat PsA, and the right treatment plan for a given patient should be personalized to their symptoms, medical history, and preferences. Some treatments work better for joint symptoms; others work better for skin symptoms, for example. Some medications are taken orally; others are given by injection or infusion. Some medications — like NSAIDs, as well as corticosteroids or topical treatments for psoriasis — don’t stop disease progression but rather just treat current symptoms.

All of these factors must be considered when selecting the right PsA treatment. Every medication has its own potential risks and side effects, so it’s important to talk to your doctor about that before taking any new medication.

Other medications to treat PsA include:

  • Disease-modifying antirheumatic drugs (DMARDs) and immunosuppressants to help reduce inflammation and that may reduce joint damage; these are often taken orally
  • Biologics, a newer class of DMARDs that target specific parts of the immune system that trigger inflammation, helping to prevent joint damage; these are taken as injections or infusions
  • Targeted synthetic DMARDs, which include newer oral medications called Janus kinase (JAK) inhibitors that help regulate inflammation within cells, helping to prevent joint damage

Myth: You can stop treatment if your PsA symptoms improve

Fact: If you quit your psoriatic arthritis treatment, symptoms like joint pain and inflammation will likely return

You may have periods when your psoriatic arthritis symptoms improve or go into minimal disease activity. But that doesn’t mean the disease is gone; it’s just that disease activity is low. If you stop treatment during this “quiet” time, your symptoms may flare up again. For example, one study published in the Journal of Rheumatology found that 73 percent of psoriatic arthritis patients who stopped their biologic medication after disease activity decreased experienced a recurrence in symptoms.

“When a patient has low disease activity, the question becomes: Are symptoms controlled because of medications or did the disease spontaneously go into remission?” says Dr. Bose. Patients who have had an aggressive or difficult disease course should stick to their regimen through remissions. In some cases, however, Dr. Bose says your doctor may be able to decrease the dose or frequency of your medication, and watch for flares, she says.

But remember: Any changes in your treatment plan require working with your doctor, under close supervision. Psoriatic arthritis is a chronic inflammatory disease. Even if you feel like you’re not experiencing symptoms, it’s important to work with your doctor to make sure your inflammation levels are low in order to avoid complications.

Myth: Only medicine eases psoriatic arthritis symptoms

Fact: Lifestyle changes help improve PsA symptoms, too

“Any kind of rheumatological disease deserves lifestyle management, along with medicine,” says Dr. Bose. “Proper diet, physical activity, stress relief, good sleep — these are all factors to help combat inflammation and help your medicines work optimally.”

This is not to say that lifestyle changes alone can manage PsA; they should be part of an overall treatment plan. For example, getting regular physical activity and eating nutritious foods can help you lose weight or maintain a healthy weight (more on this below). Lifestyle changes are also a big part of helping with fatigue and mental health.

Another factor: taking steps in your daily routine to protect your joints. The Mayo Clinic says changing if and how you do everyday activities can impact how well you feel. For example, you can avoid straining your finger joints by using assistive devices, such as jar openers, lifting heavy items with both hands, and pushing doors open with body, not just your fingers.

Myth: You have to lose lots of weight as part of your psoriatic arthritis treatment plan

Fact: Even shedding a few pounds can help PsA meds more effective

Being overweight or obese not only makes you more likely to develop psoriatic arthritis, it may also affect disease activity and how you respond to medication, according to a review of research. But just losing a little weight may help: In one study of patients being treated with tumor necrosis factor (TNF) alpha blockers for psoriatic arthritis (a type of biologic medication) those who lost at least 5 percent of their total body weight showed more of a response to treatment than those who did not lose weight.

Maintaining a healthy weight also places less strain on your joints, which can help reduce pain and improve mobility.

Myth: You have to stop working out if you have PsA

Fact: You can — and should — stay active if you have psoriatic arthritis

Repeat after us: It’s a myth that exercise is bad for arthritis. This includes PsA. On the contrary, regular exercise can help keep your joints flexible and muscles strong. The key is to start slowly, go at your own pace, and gradually build up what you can do. Before beginning any new exercise program, talk to your doctor to make sure it’s appropriate and safe for you. They also may recommend physical and occupational therapy to help strengthen muscles and protect joints from further damage.

Walking is one of the best ways to get moving for arthritis pain, stiffness, and fatigue. Biking and swimming are also good, low-impact cardio options, while yoga and stretching can help with relaxation.

Myth: You only need to see a dermatologist or rheumatologist to treat psoriatic arthritis

Fact: You may need both, as well as other specialists, to best manage your PsA

Good control of skin symptoms is important in the management of psoriasis and psoriatic arthritis, and that often requires seeing a dermatologist. But psoriatic arthritis is a systemic disease, and it can often be confused with osteoarthritis, rheumatoid arthritis, and other rheumatic diseases. That’s where a rheumatologist plays a key role. As a specialist in rheumatic diseases, they can help make a proper diagnosis, determine the medicines needed to protect your joints and prevent damage, and help monitor for comorbidities. And the two specialists need to collaborate to fully treat both the joint and skin manifestations, so you have the best care, say experts.

Not every person with PsA necessarily needs to see a dermatologist and rheumatologist frequently, though. Since some PsA treatments help control both skin and joint symptoms, you may see one doctor more often than the other depending on the severity of your condition, which symptoms affect you most, and other factors such as convenience or which doctor you prefer.

In addition, you may also need to see other specialists to help with other manifestations of PsA, such as an eye doctor if you experience eye inflammation or a GI doctor if you experience inflammation in your digestive tract.

Managing PsA with multiple providers requires self-advocacy and good communication. Make sure any doctor you’re seeing knows the medications you’re taking, your current symptoms, and your medical history. If you’re not already seeing a primary care doctor in addition to your rheumatologist and dermatologist, it’s a good idea to start seeing one to help oversee and coordinate all of your medical care.

Track Your Symptoms with ArthritisPower.

Join CreakyJoints’ patient-centered research registry and track symptoms like fatigue and pain. Learn more and sign up here.

Di Minno MN, et al. Weight loss and achievement of minimal disease activity in patients with psoriatic arthritis starting treatment with tumour necrosis factor α blockers. Annals of the Rheumatic Diseases. June 14, 2013. doi: https://doi.org/10.1136/annrheumdis-2012-202812.

Hammadi AA, et al. What is the arthritis mutilans pattern of psoriatic arthritis? Medscape. April 9, 2020. https://www.medscape.com/answers/2196539-155435/what-is-the-arthritis-mutilans-pattern-of-psoriatic-arthritis.

Harrold LR, et al. Rebound in Measures of Disease Activity and Symptoms in Corrona Registry Patients with Psoriatic Arthritis Who Discontinue Tumor Necrosis Factor Inhibitor Therapy after Achieving Low Disease Activity. The Journal of Rhuematology. January 2018. doi: https://doi.org/10.3899/jrheum.161567.

Interview with Erin Bauer, MD, a rheumatologist at Virginia Mason Medical Center in Washington

Interview with Nilanjana Bose, MD, a board-certified rheumatologist with the Rheumatology Center of Houston

Kumthekar A, et al. Obesity and Psoriatic Arthritis: A Narrative Review. Rheumatology and Therapy. June 3, 2020. doi: https://doi.org/10.1007/s40744-020-00215-6.

Mease PJ, et al. Prevalence of rheumatologist-diagnosed psoriatic arthritis in patients with psoriasis in European/North American dermatology clinics. Journal of the American Academy of Dermatology. August 26, 2013. doi: https://doi.org/10.1016/j.jaad.2013.07.023.

Psoriatic arthritis. American College of Rheumatology. March 2019. https://www.rheumatology.org/I-Am-A/Patient-Caregiver/Diseases-Conditions/Psoriatic-Arthritis.

Psoriatic arthritis. Cleveland Clinic. November 29, 2019. https://my.clevelandclinic.org/health/diseases/13286-psoriatic-arthritis#management-and-treatment.

Psoriatic arthritis. Mayo Clinic. September 21, 2019. https://www.mayoclinic.org/diseases-conditions/psoriatic-arthritis/symptoms-causes/syc-20354076.

Zusman EZ, et al. Epidemiology of depression and anxiety in patients with psoriatic arthritis: A systematic review and meta-analysis. Seminars in Arthritis and Rheumatism. December 2020. doi: https://doi.org/10.1016/j.semarthrit.2020.02.001.

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