Sausage Fingers, Biologics, and The (EULAR) European Alliance of Associations Conference: A Reflection.
Woman researching Psoriatic Arthritis in Spain
The year is 2025. While Barcelona basked in the Spanish sun, I found myself virtually immersed in a pivotal event: the European Alliance of Associations Conference (EULAR). As someone who has navigated the tumultuous waters of Psoriatic Arthritis, this conference wasn't just another online seminar; it was a beacon of hope, a validation of experience, and a stark reminder of how far we've come – and how much further we need to go. My journey, fraught with misdiagnosis and moments of profound despair, resonated deeply with the themes explored, transforming what began as virtual attendance into a profoundly personal odyssey. Day one was on Psoriatic arthritis, abstracts, and biologics. My aim here is to capture the rollercoaster of emotions and insights gleaned from this remarkable conference, filtered through the lens of my own, all-too-real battle with psoriatic arthritis.
My story began not with a clear diagnosis, but with agonizing, inexplicable joint pain and profound fatigue. Days bled into weeks, weeks into months, each filled with increasing discomfort and a growing sense of dread. The early stages were pure, unadulterated tension. For too long, the puzzle pieces just didn't fit. Rheumatoid arthritis, then fibromyalgia – these were the initial pronouncements. What wasn't factored in, what seemingly remained in the diagnostic blind spot, was the pervasive skin involvement. Pustules on my face, angry patches on my back, painful eruptions on my palms and the soles of my feet – these were dismissed, or at least not connected to the crippling joint pain.
The conference highlighted the critical importance of a holistic view, something I desperately needed. The information presented in some of the abstracts was a comparison of treat to target or a step-based treatment. They embarked on finding out if starting with methotrexate was the gold standard or if starting with biologics was more effective. The results were variable, as some presented starting with biologics did not show big changes, compared to those who started out with methotrexate. The CEO of Aiarthritis, a patient living with axial spondyloarthritis, Tiffany Westrich-Robertson, explained that an important fact to consider is the severity of one’s disease and the nuance that the people studied in the research may have only had mild psoriatic arthritis. It was validating to hear this because I started out on oral medicine, which had no effect on me; methotrexate gave me sores in my mouth and was stopped as soon as I started it. I did not see any real improvement until I started biologics. I went through almost a year of suffering before biologics were introduced.
The conference beautifully articulated the interconnectedness of various symptoms in autoimmune diseases. For me, it was the realization that my skin was talking to my joints, and finally, someone was listening to both. They also found that biologics are effective in your body for up to 3 years after use. The journey to a correct diagnosis was long and arduous, but ultimately, it led me to the right path. It wasn't just about identifying the disease but understanding its multifaceted presentation.
“About 40% of people with psoriatic arthritis develop puffy, ‘sausage-like’ fingers and toes, known as dactylitis. This hallmark of PsA “is really a form of enthesitis,” says Dr. Bykerk, because inflammation in the connective tissue of the digits contributes to the swelling. This was my first time hearing these terms explained at the conference, but I was very familiar with how they presented in my body. According to the Cleveland Clinic, “Enthesopathy causes pain and other symptoms where your tendons and ligaments connect to your bones. Enthesitis (inflammation at one of these points) is the most common type. Lots of injuries and health conditions that cause inflammation in your connective tissue can cause enthesopathies”. The thing I was happy to hear mentioned was costochondritis. Until I had to go to the ER thinking I was having a heart attack, I knew nothing of this symptom. Costochondritis is chest pain caused by inflammation of the cartilage around the sternum. The sternum is the area in the body where the ribs connect to the breastbone. Cartilage is the tissue that connects the joints between bones. It typically acts as a shock absorber by cushioning the joints. But when the sternum cartilage becomes inflamed, it can lead to symptoms such as chest pain. This is also a rarely talked about symptom of psoriatic arthritis.
Our voices and our stories are crucial in shaping research, improving diagnostic pathways, and ensuring that healthcare truly serves those who need it most. My experience ignited a desire to continue to contribute to this space. Despite being thousands of miles away, the virtual format allowed me to connect with and learn from people who have put in the research to help elevate the chronic illness community. The impact of these discussions on my perspective was undeniably real.
Attending the European Alliance of Associations Conference in 2025, from my living room, felt like reaching a zenith of hope and progress. It transformed my personal agony into a potent source of inspiration, not just for myself, but for others still searching for their own breakthrough. I wish to write and create content that others living with chronic illnesses, like myself, can find hope and the push to seek out education on their condition. My journey from misdiagnosis to managing psoriatic arthritis has been long and challenging, but the insights from this virtual gathering have solidified my belief that with continued advocacy and advanced research, a brighter future awaits all those living with chronic conditions.
