Results from Psoriatic Arthritis In America 2016, a new U.S. survey of more than 500 people with psoriatic arthritis (PsA), reveal that securing a diagnosis often is a lengthy and frustrating ordeal, with most patients experiencing multiple symptoms before their illness is confirmed.
In most cases, psoriasis develops before PsA, with the latter usually developing five to 10 years after psoriasis starts. However, in about 10%-15% of patients, PsA develops before psoriasis.
The survey, was conducted online by Health Union June 20-July 27. In the respondent population, almost 66% of PsA patients also were diagnosed with psoriasis, which was diagnosed first in 71% of the cases. In just less than half of the respondents (44%), the two diagnoses arrived almost a decade apart.
There are no definitive tests for PsA, and most patients are evaluated with Classification Criteria for Psoriatic Arthritis (CASPAR). On average, 41% of the survey respondents visited four or more healthcare professionals before they were diagnosed.
The problem with it taking so much time is that early diagnosis is critical for successful treatment, which can help with managing some painful symptoms, as well as slowing disease progression.
The survey found that, on average, participants reported six different symptoms combined before learning about a PsA diagnosis. Some of the initial symptoms included joint involvement (83%), musculoskeletal lesions (76%) and nail involvement (37%), with 28% of the respondents reporting the three symptoms combined.
Respondents also reported that the most difficult symptoms to manage were fatigue (82%), painful, swollen or stiff joints (80%) and lower back/neck pain (61%).
“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,” Diane Talbert, a community advocate, said in a press release. “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,” she said.
Talbert talks of a feeling shared by many PsA patients, the fact that some symptoms are very difficult to explain to others. When asked which aspects were most difficult to explain, respondents said fatigue (82%) was one of them, as well as different types of pain (71%), other symptoms that are not always joint-related (66%) and the fact that PsA is not osteoarthritis (55%).
Based on this survey’s results, Health Union has launched Psoriatic-Arthritis.com, a new online community dedicated to people living with PsA, so that patients and supporters can connect, share experiences and learn about management options for the condition.
“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,” Tim Armand, president and co-founder of Health Union said. “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,” he said.