Psoriatic Arthritis: What to Know About This Painful Autoimmune Disease

If you have the skin condition , there’s a chance you could also develop psoriatic arthritis. Up to 30% of psoriasis patients will eventually develop psoriatic arthritis, which causes pain, swelling, and stiffness in the joints. The condition usually appears between the ages of 30 and 50 (although it can also start in childhood), and both men and women are equally at risk.

Both psoriasis and psoriatic arthritis are autoimmune diseases, meaning they result when your immune system attacks your body, triggering inflammation. In the case of psoriasis, the immune system attack affects the skin, resulting in raised red, white, or silvery patches. With psoriatic arthritis, the immune system attacks the joints, usually those in the fingers, toes, ankles, knees, wrists, or even the neck and spine.

Many psoriatic arthritis symptoms are similar to those of other forms of arthritis, which can make the condition difficult to diagnose. Like , psoriatic arthritis can cause painful joints. But osteoarthritis pain usually is a result of cartilage on the joints wearing down and rubbing against each other. Psoriatic arthritis is caused by inflammation in and around the joint and is sometimes mistaken for rheumatoid arthritis, another autoimmune disease with similar symptoms.

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Experts are still trying to figure out what, exactly, causes psoriatic arthritis.

“It probably does have some sort of genetic underpinning,” says Kevin McKown, MD, head of rheumatology at the University of Wisconsin School of Medicine and Public Health, adding that environmental factors usually also play a role.

Having psoriasis is obviously the main risk factor for developing psoriatic arthritis, although it is possible to have psoriatic arthritis without skin psoriasis. Being obese may also increase your risk.

“Some of that may be that adipose [fat] tissue promotes inflammation,” says Dr. McKown. 

Once psoriatic arthritis is identified—usually by looking at a patient’s medical history and X-rays—it’s important for patients to begin treatment right away, since the condition can lead to permanent joint damage over time. Psoriatic arthritis can also raise your risk of other health conditions, such as and depression. 

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Mild psoriatic arthritis may benefit from simple lifestyle changes (for example, moderate exercise) and over-the-counter nonsteroidal anti-inflammatory drugs (NSAIDs), such as ibuprofen (Mortrin and Advil) and naproxen (Aleve). More severe cases usually require stronger drugs, such as disease-modifying antirheumatic drugs (DMARDs) and biologic therapy.

Dr. McKown explains that some studies have shown that controlling inflammation in rheumatoid arthritis helps a person live longer and with fewer cardiac events—and this could offer hope for psoriatic arthritis patients, as well.

“We don’t know yet if this is the case for psoriatic arthritis, but it makes sense,” he says.

What It’s Really Like to Have Psoriatic Arthritis

Jody Quinn, 58, was diagnosed with psoriatic arthritis 13 years ago. Symptoms of the autoimmune disease appeared gradually; at first, she only experienced pain in her wrist and elbow. As a result, her friends had trouble understanding what she was going through. But by becoming her own advocate, Quinn has helped educate those close to her about the painful disease.

I was first diagnosed with in 2003, when I was in my mid-40s. But looking back, I suspect I had the disease for about 10 years before that. It was a long road to get my diagnosis. At first, the pain was confined to my wrist and elbows, so doctors assumed I had repetitive stress injuries. They recommended modifications to my daily routine, such as using an ergonomic keyboard.

Once I was diagnosed with psoriatic arthritis, I found that many people weren’t familiar with the disease. And when people can’t see the effects of a condition, they tend to assume that it isn’t serious.

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I had trouble relating to friends and family

Everyone seemed to have advice to offer. People would tell me that I could cure my psoriatic arthritis by losing weight, cutting gluten out of my diet, or making a lifestyle change. You would never say that to someone with cancer. But I still appreciated their ideas because it helped open up a dialogue.

I tend to be a very go-go-go kind of person, but once I was diagnosed, I realized I needed to take it a little easier. Even if I feel up for it, I try to limit my activities—I know a busy schedule can catch up with me, and then I might not be able to get out of bed for a day. Surprisingly, it’s been harder for my longtime friends to accept this, because they remember the old active me.

At the same time, I also try to hide some of the pain psoriatic arthritis causes me. Nobody has seen my fingernails in 13 years, since I always keep them polished so you can’t tell that they are splitting, pitting, and lifting up from the nail bed (a common symptom for psoriatic arthritis patients). Recently, my fingers have started to be affected, too. The joints on my right pointer finger and my left hand are swollen, and my baby fingers are often bruised.

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Increased awareness of psoriatic arthritis has helped

In 2011, golfer Phil Mickelson shared that he’d been diagnosed with psoriatic arthritis. Soon after, celebrities like Kim Kardashian and Cyndi Lauper started speaking out about their experiences with , a skin condition that I also have (up to 30% of psoriasis patients eventually develop psoriatic arthritis). The increased media attention helped my friends and family understand that I have a real disease that affects my daily life.

It has also been invaluable to have an understanding employer. I’m an office manager at a small, family-owned construction company. They’ve been by my side since I was first diagnosed and are very supportive when I need to take days off for treatment. I’ve even started taking Mondays off so I can use that day to get ready for the week ahead. Proper rest is so important for people with psoriatic arthritis.

I make a point to modify my activities, such as taking the elevator instead of the stairs. But even though I have to accept that I can’t do some of the things I used to love, such as workout out or going on a big vacation, I try to stay as active as possible.

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How I’m helping educate others about psoriatic arthritis

Whenever I’d tell someone I have psoriatic arthritis, they often hadn’t heard of it. So I decided to volunteer as a community ambassador for the National Psoriasis Foundation, a non-profit organization that helps people with psoriasis and psoriatic arthritis. I work with healthcare professionals, legislators, media, and the general public to increase awareness about the disease.

I also organized a team called Jody’s Psore Joint Journey. We participate in a 5K race held by the National Psoriasis Foundation in Boston each year that raises money for people with psoriatic diseases.

 

As told to Carina Storrs

It Took Doctors 30 Years to Diagnose My Psoriatic Arthritis

Mollie Carman, 55, developed when she was a teenager—but it took her three decades to get an official diagnosis. Along the way, doctors suspected she could have fibromyalgia or lupus. Everything changed when she finally saw a rheumatologist. Now, Carman is working to increase awareness about the painful disease.

It’s hard to remember a time when I didn’t have psoriatic disease. As a baby, I had psoriasis on my scalp—it is really sad that this disease can affect small children.

Then, when I was about 13 years old, I developed a type of psoriasis called guttate psoriasis, which was probably triggered by the strep throat I had a few weeks earlier. Small pink lesions broke out on about 90% of my body—my husband compares it to a poison oak rash.

Around this time, I also started suffering from excruciating back pain. I almost can’t describe the feeling; it was like a muscle spasm that I would wake up with and kept feeling the entire day. But while I was diagnosed with psoriasis fairly quickly, nobody seemed to know what was causing my back pain.

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The long road towards diagnosis

My symptoms worsened in my 20s and 30s, even as I somehow managed to have four children by the time I was 33. The pain started to affect my neck and other joints, but I continued doing all the things I always did—hiking with my young kids, running, and swimming in Lake Michigan. I’ve had physical problems all my life, so I just assumed I was weak. Meanwhile, my dermatologist, primary care doctor, and other specialists told me I could have , lupus, or . It seemed like I’d get a different possible diagnosis at every visit.

I started reading all the medical books I could get my hands on and became familiar with psoriatic arthritis. I even sort of “diagnosed” a neighbor who had a sausage finger—swollen toes and fingers are common psoriatic arthritis symptoms. I told him, “I think you should see a rheumatologist, because you probably have psoriatic arthritis.” Sure enough, he did.

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I needed to find the right doctor, too

But I didn’t follow my own advice and see a rheumatologist until 2002, when I was in my early 40s. My husband and I were busy with our kids and in the process of moving from Wisconsin to Idaho. But once we were settled, I found a rheumatologist in Boise who is considered one of the best in the Northwest. He took an X-ray of my pelvis, and I finally got my diagnosis. It turned out that I have a condition called spondylitis, a type of psoriatic arthritis that can affect the bones in the pelvis. In my case, some of the joints in my lower spine had fused. 

By that time, though, a lot of damage had already been done. Treatment for psoriatic arthritis can’t reverse existing damage. Plus, many of them don’t work that well for me since my disease is already so advanced. My pubic bones have hardened and my joints have stiffened. I have had to have cervical spine surgery and a hip replacement. Every year it gets worse, especially in the winter, when it feels like I’m walking through quick sand.

I urge anyone who thinks they might have psoriatic arthritis to find a good rheumatologist. The National Psoriasis Foundation, which I’m an advocate for, can help you find some in your area. Facebook groups can also be a good resource for tracking down rheumatologists. And luckily, it’s now much easier than it used to be to find a board-certified rheumatologist who specializes in the disease.

 

As told to Carina Storrs

The 5 Types of Psoriatic Arthritis

Up to 30% of people with will develop psoriatic arthritis, an autoimmune disease that can lead to pain, swelling, and stiffness in the joints. Psoriatic arthritis is generally divided into five subtypes, depending on which joints are affected and how many. But the system isn’t perfect. For instance, the five types don’t take into account symptoms such as dactylitis (when the fingers and toes swell into sausages) and enthesitis (inflammation of areas near the tendons and ligaments). You can also have one type of psoriatic arthritis initially only to develop a different type later on. Still, says Namrata Singh, MD, clinical assistant professor of medicine at the University of Iowa Carver School of Medicine, the types provide a good “bird’s eye view” of the condition and can also help guide therapy. Here, the five forms of psoriatic arthritis patients should know about.

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Asymmetric oligoarticular

Asymmetric oligoarticular psoriatic arthritis (sometimes referred to as simply asymmetric psoriatic arthritis) affects about a third of people with the condition. It’s “asymmetric” because a joint on one side of the body can be affected while the mirror-image joint on the other side remains healthy. Although this type can affect any part of the body, it usually impacts no more than four or five joints.

Symmetric polyarthritis

Also known as symmetric psoriatic arthritis, this is the most common form of the condition and accounts for about half of all cases. This type is “symmetric” because it affects the same joint on both sides of the body, much like . It usually impacts five or more joints which, again, can be anywhere on the body.

Distal interphalangeal predominant

About 20% of psoriatic arthritis cases involve the body’s distal interphalangeal joints, meaning those at the ends of the toes and fingers. Because these joints are closest to the nails, symptoms can include nail changes such as spotting, pitting, or separating from the nail bed.

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Spondylitis

In spondylitis, inflammation reaches the spine, causing stiffness as well as pain and difficulty moving the neck, lower back, and sacroiliac joints, which are the joints between the sacrum (the bone that supports the spine and is connected to your tailbone) and the pelvis. This type can also affect joints in the arms, legs, hands, and feet.

Arthritis mutilans

The most severe form of psoriatic arthritis, arthritis mutilans accounts for about 5% of cases and can seriously damage the joints in the hands and feet. Over time, it can lead to “telescoping” of the digits, when the fingers and toes become shorter, and can also contribute to bone loss. “Hopefully, we are seeing less and less [arthritis mutilans] because therapies are working well,” says Dr. Singh. 

I Ignored My Psoriatic Arthritis Symptoms—and Made It Worse

John Montemarano, 55, began to notice symptoms of psoriatic arthritis and psoriasis when he was in his early 40s. But he ignored the pain and discomfort out of embarrassment and fear of having to give up his active lifestyle. As a result, he learned the hard way that an untreated disease can be much worse than any potential side effects of medication. Now, he’s better about getting medical care when he needs it.

It can be pretty easy to hide the early signs of and psoriatic arthritis—and for the first few years that I had these conditions, that’s exactly what I did.

I first started to notice a rash in my groin and anal area when I was in my early 40s, but I thought it was just jock itch. I didn’t tell my doctor because I was embarrassed. I kept doing everything I’d usually do, like going on trips with wife. I’ll tell you, jumping in the salty Caribbean ocean with basically open wounds on your groin is not a pretty sight!

I was finally diagnosed with psoriasis when I was about 48. My wife urged me to get a full physical because I have had sarcoidosis—an inflammatory condition that can affect many organs in the body—since I was in my 30s. The urologist took one look at my “jock itch” and told me I had psoriasis. 

Around the same time the rash started, I was also having joint pain, especially in my knee. Since I’ve always been very active, it was easy to blame my pain on normal wear and tear or . But I had a hunch it could be psoriatic arthritis; I’d Googled “joint pain” and “skin rash,” and that was the first result that came up.

Once again, I avoided bringing it up with my doctors. I was afraid of the heavy-duty medications I might need and the side effects they could cause, such as fatigue. And I was also scared of simply being told I had psoriatic arthritis. Instead, I tried to self-medicate my joint pain with alcohol.

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Finally, an official diagnosisand treatment

But the pain became so unbearable that I couldn’t sleep at night. My arms and hand would go numb—it was excruciating. I had to sleep in the spare bedroom because I’d move around during the night, frequently shaking my arms to get the feeling back. When I gave in and told a rheumatologist about my symptoms, I immediately was diagnosed with psoriatic arthritis.

I’ve now been on medication since 2009, and I can say that any side effects it’s caused are nothing compared to the joint pain I was experiencing before. Sometimes I forgot just how bad my symptoms were. My medication has also made my psoriasis go away. Still, it hasn’t exactly been a cure-all. It doesn’t work as well as it did at first, and my doctor and I have already changed the dose from every other week to weekly. And when I have a bad flare, I don’t know when it will go away or subside. My only other option would be to try a different medication, but I’m concerned that if I do, my psoriasis might return.

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Adjusting to a less-active lifestyle

There are still times when I avoid getting medical care. I often tell other people not to play doctor, but I need to follow my own advice. For example, I hurt my left ankle a few years ago. It was made worse by the fact that I don’t want to give up the activities I love, like playing racquetball and going on walks with my wife every day—I feel bad that I can’t do as much with her now. I should have gotten an MRI of my ankle immediately, but I waited a year, and by then there was a lot of damage.

Fortunately, doctors recommended platelet-rich plasma therapy, and after two treatments, I feel like my ankle is almost 100% again.

But I’m proud that on other occasions, I sought medical help more promptly. Four years ago, I was getting so exhausted that I couldn’t think straight or even put a sentence together by noon on some days. My doctors assumed it was related to the medication or psoriatic arthritis itself, but I thought there was more to it. I reached out to a new doctor who did more blood work, and found out I had increased levels of the hormone prolactin. It turned out that I had a benign tumor in my pituitary gland that was leading to low levels of testosterone—and it wasn’t at all related to my psoriatic arthritis or the medication I was taking. I started taking a new medication to bring down my prolactin levels, and I’ve had more energy as a result.

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I feel grateful to have had an understanding employer

When I was diagnosed with psoriatic arthritis, I was a director for the New York City public transit system and could modify my workday so I didn’t have to walk around as much. I also had a great staff, and we helped each other out.

I don’t know how people do it if they have jobs that require them to be more active, such as cops, firefighters, or construction workers. I’d suggest talking with your employer to see if you can take on different tasks that require less heavy lifting. See if you can adjust your work schedule and meetings around the times that you are most tired.

But it’s not just the workplace—many aspects of society should be more supportive of people with disabilities. Even though I have pain all over my body, you really can’t tell from looking at me. So people are sometimes surprised when I have to limit my activities. I have to be careful not to pull or aggravate a tendon or muscle, because if I do, the pain will last so much longer than for healthy people. I wish more people would understand that you can look outwardly healthy, but still have a condition like psoriatic arthritis that makes certain activities challenging.

 

As told to Carina Storrs

What to Know About the Link Between Vitamin D and Psoriatic Arthritis

If you have , you may have heard that people with the condition—which causes painful, swollen, stiff joints—often have low levels of vitamin D. In a 2015 study published in Arthritis Research & Therapy, researchers found that 40.9% of participants with psoriatic arthritis had a vitamin D deficiency, compared to 26.7% of control participants. Other autoimmune diseases have also been linked to low levels of the sunshine vitamin (so-called because the body produces vitamin D when it’s exposed to sunlight—you can also get some vitamin D from food, but sunshine is the main source). In the same study as above, 40.5% of patients were found to have a deficiency, as did 57.8% of psoriasis patients in earlier research from the British Journal of Dermatology.

Experts believe inflammation may have something to do with this. Autoimmune diseases like psoriatic arthritis and psoriasis involve an inflammation process, explains Waseem Mir, MD, a rheumatologist at Lenox Hill Hospital in New York City. “We think that inflammation causes a decrease in vitamin D,” he told Health. “[It’s] not because [people] don’t have enough vitamin D in their body, but they’re not processing it correctly.”

It makes sense. The body needs vitamin D to absorb calcium. Both calcium and vitamin D work to promote healthy bones, and vitamin D also seems to be involved in proper functioning of the immune system. And the bones and immune system are both compromised in people who have psoriatic arthritis.

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Can vitamin D treatment help?

Dr. Mir points out that there’s been some research to suggest that vitamin D treatment may help ease joint pain in certain people with psoriatic arthritis. One such treatment is vitamin D supplements. If you have psoriatic arthritis, speak to your doctor about your vitamin D levels to find out if supplements are right for you.

Another treatment is phototherapy (careful exposure to ultraviolet rays), but there isn’t enough research to recommend this for psoriatic arthritis patients. And although you can feel free to add more vitamin D-rich foods to your plate (think: fatty fish like salmon and tuna, certain kinds of mushrooms, and fortified milk) it’s unlikely that you’d be able to reverse a true deficiency through diet alone.

In his own practice, Dr. Mir usually prescribes liquid vitamin D to patients, which he says helps get a better response.

“That is the most effective,” he says. “A lot of it is absorbed through the mouth.”

However, it is possible to get too much vitamin D, which can result in a build-up of calcium in the blood and possibly lead to nausea, vomiting, and kidney problems. Speak to your doctor before adding any new supplements to your diet.