5th Annual Psoriatic Arthritis In America: Finding Validation
Different experiences, different treatments, and different symptoms. It is these variations in disease activity and progression that we need to be aware of, especially when we speak to one another, our loved ones, and our healthcare team.
In our 5th Annual Psoriatic Arthritis In America survey, we learned more about the differences in symptoms, side effects, and progression of psoriatic arthritis in the lives of those living with the condition.
Psoriatic arthritis treatment & side effects
To continually try new treatments without seeing progress or experiencing relief can be extremely frustrating. In fact, 4 out of 5 respondents agree with just this point.
Treatment options vary depending on the severity and symptoms. About 64 percent of those with psoriatic arthritis currently use a biologic, JAK inhibitor, or small molecule medication. Another 19 percent used one in the past, and 16 percent have never used one.
Sometimes it feels like the side effects of treatment can become worse than the condition itself. These frustrating side effects can include anxiety, brain fog, fever, and hair loss.
What does psoriatic arthritis remission look like?
The flare pattern of psoriatic arthritis fluctuates over time, with periods of more intense symptoms and periods of remission. In fact, 32 percent of those living with psoriatic arthritis reported 10 or more flares in the past year.
As symptoms can vary from person to person, it is normal to experience symptom improvement, and even at times go into remission – which means that symptoms are nearly nonexistent. Of the 6 percent of those living with PsA that reported remission, nearly 6 in 10 have been in remission for less than a year.
The emotional aspect of psoriatic arthritis
Those living with psoriatic arthritis feel uncertain about their future and are searching for support and understanding. Nearly 75 percent of survey respondents reported needing some type of support, with emotional support being the most common.
For many of those living with psoriatic arthritis, it can be hard to talk about the challenges and frustrations they face daily. There are many things they wish their loved ones knew, such as how tiring the condition can be and how simple tasks can feel the most difficult.
The lesser-known symptoms of psoriatic arthritis
We know that joint involvement and long-term damage to the joints are primary symptoms of psoriatic arthritis. In fact, 93 percent of those living with psoriatic arthritis report painful, swollen, or stiff joints, and 79 percent report reduce range of motion in joints.
But what about those non-joint symptoms that painfully impact daily life? Those living with psoriatic arthritis reported living with the following symptoms within a month.
The PsA journey and doctor relationships
Those living with psoriatic arthritis have shared their thoughts on their diagnosis and provided reflections on their treatment journey.
“Earlier diagnosis. It seems that providers want to attribute symptoms to other causes or dismiss them entirely...”
“Find a rheumatologist that I am more comfortable with, takes time to explain things, shares new information, and LISTENS”
“I need to become more proactive with my treatment and get pain and mobility issues under control”
This insight confirms that as one takes on living with psoriatic arthritis, it is important to maintain an open and informed relationship with your healthcare provider. Allow yourself to be proactive about treatment and honest about the true challenges.
The 5th Annual Psoriatic Arthritis In America survey was conducted online from May 2020 through June 2020. 1,120 people completed the survey.
Do you have a sleep disorder (eg. insomnia, sleep apnea, RLS) in addition to your PsA?