Community Views: Psoriatic Arthritis Treatment Journeys

What comes to mind when you read the words "psoriatic arthritis treatment"? It might be a lot of different thoughts, feelings and emotions. After all, the treatment journey for those with psoriatic arthritis (PsA) can often be a long and trying one. Maybe it's why we refer to it as a journey.

A journey indeed...

There are quite a few journeys when living with PsA, and it usually starts with the diagnosis journey. I mean, not only does it take many people years to get a correct diagnosis, but it can take much longer than that to find treatment that makes them feel better. An easy and fast path to treatment, sadly, is rare.

To find out more about the PsA treatment journey, we asked the Psoriatic-Arthritis.com Facebook community, “How long have you lived with PsA? What has your treatment journey been like?” Nearly 150 community members responded. Here are the main themes of what they shared.

For some, it took a few years to diagnose

For many people living with PsA, it takes at least 2 years to get a diagnosis. There is often no clear path from symptoms to diagnosis.

• “I have lived with it since my early 20s but did not get the official diagnosis of PsA until 2015 at age 24.”
• “I only found out that I had PsA in January 2020. I had symptoms for at least a couple years before that.”
• “I was diagnosed at age 32 with arthritis. It took 5 years to figure out it was psoriatic arthritis.”

For others, it took decades to diagnose

Several community members endured the pain without a diagnosis for much longer. Sometimes, it took several decades.

• “I have lived with it since my late 20s. Doctors always told me that everyone lives with pain. They disregarded the skin problems and told me it was just something I came into contact with.”
• “When I turned 50, holding anything became very painful and walking was very difficult. Now that I have a diagnosis, I understand that people do not live with pain at an 8 out of 10 every single day.”

For some, it took only 1 visit to the rheumatologist

The biggest step toward diagnosis and treatment, for many people, was that first visit with a rheumatologist. A lot of other doctors may have had opinions, but it was only when community members saw a rheumatologist that they got clarity. This gave them a jump start on the path toward drug treatment.

• “The thing that set off the path to diagnosis was when I had an eye infection in 2019 and the eye specialist insisted I see a rheumatologist. Here we are.”
• “My first visit to the rheumatologist resulted in a diagnosis.”
• “The rheumatologist diagnosed me on April 19, 2021, after a full day of testing and lab work.”

Many have tried several medicines

One of the biggest challenges of living with PsA is finding a medicine that works. Community members shared that they had to try a few prescription biologics before discovering one that relieved their symptoms. Another difficulty is that the drug may not be as effective a few years later, forcing them to switch and start the whole process anew.

• “I have been on four different biologics.”
• “Over the past 8 years my medication journey started with just 2 biologics. In 2022, my rheumatologist added another. At the start of 2023 we decided to stop one and switch to another one.”
• “Unfortunately, the biologic that worked best was only really effective for a few years.”
• “I am still looking for the right medication.”

Some have found the right drug and are feeling good

The good news is that relief is possible. Many members shared that although it took trial and error, over time they found a drug treatment that works well. But even when someone finds a helpful treatment, they still have good days and bad days. Part of the journey is learning to accept that both will pass.

• “I was prescribed a biologic in 2006 and have been in remission pretty much ever since!”
• “I am in a wheelchair, but I am off all pain relief medications, except for CBD oil with THC and prednisone. I now feel the best in years.”