01/06/2026
🔴 𝐑𝐞𝐦𝐢𝐬𝐬𝐢𝐨𝐧 𝐝𝐨𝐞𝐬𝐧❜𝐭 𝐚𝐥𝐰𝐚𝐲𝐬 𝐟𝐞𝐞𝐥 𝐥𝐢𝐤𝐞 𝐫𝐞𝐦𝐢𝐬𝐬𝐢𝐨𝐧 🔴
This is one of the most important insights from a new editorial just published in Rheumatology.
📋 The editorial responds to a study analysing five years of data from the Amsterdam SLE cohort. The findings are striking:
🔹 In over half of clinical visits, patients rated their disease as more active than their physicians did.
🔹 Even among visits meeting formal remission criteria, more than 1 in 3 patients still reported significant disease burden.
These discrepancies highlight an important gap between how disease activity is measured clinically and how lupus is experienced by patients in daily life
📊 According to LUPUS EUROPE’s Swiss Knife Survey, patients’ definitions of “disease control” often go far beyond normal blood tests. They include 𝗳𝗿𝗲𝗲𝗱𝗼𝗺 𝗳𝗿𝗼𝗺 𝗳𝗹𝗮𝗿𝗲𝘀, 𝘀𝘁𝗮𝗯𝗹𝗲 𝘁𝗿𝗲𝗮𝘁𝗺𝗲𝗻𝘁, 𝗾𝘂𝗮𝗹𝗶𝘁𝘆 𝗼𝗳 𝗹𝗶𝗳𝗲, and the ability 𝗹𝗶𝘃𝗲 𝗮𝘀 𝗻𝗼𝗿𝗺𝗮𝗹𝗹𝘆 𝗮𝘀 𝗽𝗼𝘀𝘀𝗶𝗯𝗹𝗲.
𝗦𝗵𝗮𝗿𝗲 𝘄𝗶𝘁𝗵 𝘂𝘀 𝘄𝗵𝗮𝘁 𝗿𝗲𝗺𝗶𝘀𝘀𝗶𝗼𝗻 𝗺𝗲𝗮𝗻𝘀 𝗳𝗼𝗿 𝘆𝗼𝘂. Let's make it visible.
The editorial, co-authored by Dr Alvaro Gomez from Karolinska Institutet, and Zoe Karakikla-Mitsakou, LUPUS EUROPE General Secretary, points to several possible ways this might be addressed:
✅ Incorporating patient-reported outcomes into treatment target definitions
✅ Using assessment tools that better integrate patient-reported symptoms
✅ Exploring broader target frameworks that better reflect what meaningful disease control may look like for people living with lupus
This reinforces why people with lupus must be involved from the start in shaping how treatment success is defined, measured, and pursued.
💬 Have you ever been told you are in remission but not felt like it?
Share what remission means for you in the comments. Let’s make it visible.
📖 Read the full editorial: https://doi.org/10.1093/rheumatology/keag259
