Psoriatic Arthritis Patients Find Condition Difficult to Diagnose and Often Misunderstood
—Health Union’s ‘Psoriatic Arthritis In America Survey’ Finds Symptoms Varied, Progressive and Life- Altering. New Psoriatic-Arthritis.com Site Offers Access to Support and Information—
November 16th, 2016
By Editorial Team
Psoriatic Arthritis In America 2016, is a new national survey by Health Union of over 500 individuals suffering from psoriatic arthritis (PsA). The results reveal that the diagnosis process is often frustrating and lengthy, and that most patients experience multiple symptoms before leading to a psoriatic arthritis diagnosis. In addition, respondents reported difficulty explaining often invisible symptoms that progress and become more debilitating over time.
Psoriatic arthritis (PsA) is an inflammatory condition closely related to and most often co-occurring with psoriasis. Both are chronic life-long autoimmune conditions. While psoriasis affects the skin, causing red, scaly patches that are often painful and itchy; PsA has highly variable symptoms that present in different patterns with different patients. Some of the most common symptoms are pain, swelling, and stiffness of the joints; inflammation and pain of ligaments and tendons at attachment points; and fatigue.
In the majority of cases psoriasis precedes psoriatic arthritis, with PsA often developing within five to ten years after the onset of psoriasis. However, in about 10 to 15 percent of patients, PsA will develop before psoriasis. Almost two-thirds of survey respondents were also diagnosed with psoriasis, with 71% of these diagnosed with psoriasis first. Forty-four percent of respondents went more than 10 years between diagnoses.
Psoriatic arthritis is often undiagnosed or misdiagnosed. There is no definitive test for PsA, instead patients are evaluated most often with Classification Criteria for Psoriatic Arthritis (or CASPAR). On average, survey respondents went 6.6 years from symptom onset prior to diagnosis and underwent an average of 4.9 diagnostic tests. Forty-one percent visited four or more healthcare professionals. This difficulty in psoriatic arthritis diagnosis is made even more problematic because early diagnosis is critical. Treatment not only helps manage painful symptoms, but also can slow the potentially disfiguring progression of the disease.
The story of Diane Talbert, a Psoriatic-Arthritis.com community advocate, is representative of the diagnostic difficulty,
I have had psoriasis for 50 years and psoriatic arthritis for 25. The problem is that I have always seen a doctor over this time, but nobody ever put two and two together that I had psoriatic arthritis. It was extremely hard to get a diagnosis. The doctors knew my medical history and did plenty of blood tests over the years. I had MRI’s and x-rays done. I had the symptoms of psoriatic arthritis, but it was only 10 years ago that a doctor finally said I had psoriatic arthritis. It was quite a long hard road.
On average, survey participants experienced a combination of six different symptoms that led them to being diagnosed with psoriatic arthritis. Some of the initial symptoms reported were joint involvement (83%), musculoskeletal lesions (76%), and nail involvement (37%), with 28% reporting all three of these symptoms.
Similar to other autoimmune diseases, there is currently no cure for PsA. In addition, over time symptoms progress and can cause permanent, irreversible joint damage. The most common symptoms are also the most difficult to manage. When asked to identify the most difficult symptoms to manage, 82% note fatigue; 80% painful, swollen, or stiff joints; and 61% lower back and/or neck pain.
“But you don’t look sick – I hear this often. It’s hard to explain that you go to bed in pain and wake up in pain. Having inflammation in your joints is hard to explain,” said Talbert. “I take care of myself, so I look the picture of health. My symptoms have been achy joints to swelling of the fingers and toes and inflammation in the joints. Sometimes this pain can last 24 hours a day or more. Anyone living with this disease knows that you can have your good days and your bad days. Other people often don’t understand.”
Most PsA symptoms are largely hidden. This invisibility can lead to feelings of isolation. As well, the physical limitations and impact on their life are often misunderstood and underestimated. When survey participants were asked which aspects of PsA where most difficult to explain to others, 82% cited that PsA can cause serious fatigue, 71% that it causes different types of pain, 66% that there are other symptoms not related to joints, and 55% that PsA is different from osteoarthritis.
“The fact that so many people with PsA feel misunderstood and isolated shows the value of a site like Psoriatic-Arthritis.com. This online community provides a place for people with similar experiences to come together for much needed support,” says Tim Armand, President and co-founder of Health Union. “In addition, there is a lot of great, new research out there and Psoriatic-Arthritis.com serves as an invaluable outlet for the PsA community to learn from each other and find information on the latest treatments.”
The Psoriatic Arthritis in America 2016 survey was conducted online between June 20 and July 27, 2016. More details about the survey are available upon request.
Learn more about patients living with psoriatic arthritis through the newest survey data from Psoriatic Arthritis In America 2019.