People often associate the word “arthritis” with stiff and achy joints. But psoriatic arthritis (PsA) involves so much more than, say, having trouble opening a jar of pickles.
The name just doesn’t evoke the excruciating pain, sausage-like fingers, crumbling nail beds, itchy and inflamed skin, tender tendons, locked-up spine, and mounting fatigue. And yes, we could go on.
That list of physical symptoms doesn’t even begin to encompass the invisible issues a person with a chronic illness often has to deal with. Yep, we’re talking about that pile of medical bills and other indirect costs.
We’re also talking about the extra job stress or worry about missing work, the dwindling body confidence, the depression, and the anxiety — just to name a few crappy things.
You simply can’t fit the burden of PsA into those three little initials. No, this isn’t a pity party. We simply want to provide some real talk about what it means to have this complex condition.
PsA is an autoimmune disease. That means your body mistakenly goes to war with healthy tissue, causing inflammation and damage. PsA typically does its dirty work on your joints and in places where tendons and ligaments meet up with bone.
Skin can also develop red and scaly patches because PsA and psoriasis usually go hand in hand. About 30 percent of people with psoriasis develop PsA. But PsA can show up even if you don’t have a history of skin issues. One condition can be more severe than the other.
In addition to joint pain and stiffness, you may experience swelling of joints. One 2015 study found that 39 percent of people with PsA who were surveyed had a characteristic type of swelling, called dactylitis, in their fingers in toes. The other not-so-flattering name for this symptom is “sausage digits.”
About 80 percent of people with PsA also have fingernail psoriasis, which can show up as pitted, ridged, discolored, or crumbling nails.
Not surprisingly, all these symptoms can contribute to limitations on your normal activities and, ultimately, exhaustion and loss of function.
A recent study of more than 1,000 PsA patients found that inflammatory factors, like an elevated C-reactive protein and swollen and tender joints, cause fatigue, especially as a person ages and disease progresses.
Severe PsA can lead to complications. That’s why diagnosis and treatment are so important. Unfortunately, getting to a diagnosis of PsA isn’t always a one-and-done deal.
One survey found that respondents went 6.6 years on average from symptom onset to diagnosis. And according to a 2013 study, even a 6-month delay in diagnosis can contribute to joint damage and a loss of function.
The most severe type of PsA, known as psoriatic arthritis mutilans, involves joint destruction and bone resorption that can even deform your hands and feet. But other tissue and organs can take a hit from PsA as well.
PsA can also damage your eyes. Severe inflammation and eye pain called uveitis occurs in up to 20 percent of people who have psoriasis, according to one study. And if you have PsA, you’re more likely to develop pink eye or general eye irritation, such as dryness.
You may also be at a higher risk of developing lung disease if you have PsA. A 2015 study found a connection between psoriasis and chronic obstructive pulmonary disease (COPD).
Although more research is needed, a 2019 review found a potential link between psoriasis and interstitial lung disease, a group of disorders that lead to inflammation and scarring of the lungs and contribute to breathing problems.
PsA may also put you at a higher risk of inflammatory bowel disease (IBD), such as Crohn’s disease or ulcerative colitis. These diseases have been found to have shared genetic mutations.
With a long list of physical symptoms and potential complications, it’s no surprise that PsA can throw a huge wrench in quality of life.
A 2017 targeted review found that people with PsA often deal with sleep issues as a result of pain. A loss of sleep can then poke the pain bear, making discomfort even worse and leading to a vicious cycle of more lost sleep and increased pain.
The same study also found a prevalence of poor body image among people with PsA. The visible skin issues of psoriasis, along with the swelling and decreased function caused by arthritis, can feel stigmatizing.
Stress, anxiety, mood changes, and depression can all be part of the mental load of PsA. One small study of 24 people with PsA found that the disease contributes to significant distress and, in some cases, even suicidal thoughts.
PsA and psoriasis symptoms can range from mild to severe, create long-term complications, and affect multiple areas of your body. Plus, psoriatic disease is associated with other illnesses that have inflammatory processes.
For all these reasons, putting a price tag on PsA treatment is tough.
A 2013 study, using survey data from the National Psoriasis Foundation, found that patients spend an average of $2,528 per year in out-of-pocket costs for psoriatic disease care.
But let’s get real here: That number doesn’t include the direct costs to treat conditions that often go along with PsA, like IBD, lung disease, or eye problems. It also doesn’t tally up all the indirect costs you might fork over to manage physical symptoms and other issues.
Indirect costs might include fees for mental health services, payments for alternative treatments not covered by insurance, higher grocery bills when eating an anti-inflammatory diet, over-the-counter supplements, skin care remedies, assistive devices, lost work days or lost jobs, and more.
Those costs will vary from person to person, but someone battling PsA will likely spend thousands per year to manage and treat the condition.
The bottom line is that PsA is a systemic autoimmune disease that can have a serious impact on your life. If you have PsA, you likely already know that.
But others in your orbit may not be aware that this condition involves so much more than the occasional achy back or stiff knee. We hope this article can help shed some light on the true effects of the disease.