Patient-Friendly News You Can Use: June

We’re excited to bring you the latest updates from the EULAR (European League Against Rheumatism) 2024 conference. This year, groundbreaking research and innovations were shared that could significantly impact the treatment of rheumatic diseases. One of the highlights is the potential of CAR T therapy to revolutionize the way we manage autoimmune conditions, offering new hope to many patients.

Additionally, important studies on the challenges of diagnosing and treating IgG4-Related Disease were presented, along with intriguing insights into the links between osteoarthritis and other chronic conditions. Stay tuned as we delve into these findings and what they mean for you.

CAR T: A Game-Changer for Autoimmune Disease

This year at EULAR, the buzzword was CAR T. Originally developed to fight cancer, chimeric antigen receptor (CAR) T cell therapy is now being tested for autoimmune conditions like lupus, scleroderma, and myositis. This innovative treatment involves specially modified immune cells designed to target and eliminate harmful cells, helping to reset the immune system and improve symptoms.

A study presented at EULAR demonstrated that CAR T cells could reset the immune system in patients with systemic lupus erythematosus and lupus nephritis, leading to significant improvements in symptoms and kidney function within three months. The treatment was generally well-tolerated, with only mild side effects.

A Closer Look at Challenges in IgG4-Related Disease

People with IgG4-related disease (IgG4-RD) often face challenges in getting diagnosed, choosing treatments, and finding doctors knowledgeable about their condition. A new study presented at EULAR 2024, conducted by The Global Healthy Living Foundation (GHLF) and TREND Community, surveyed patients to better understand these challenges and what kind of support patients need. The survey found that many patients see multiple doctors before getting a diagnosis, often experiencing organ damage before being diagnosed. Patients expressed a strong need for more information about treatment options, side effects, and long-term effects, as well as dietary advice to help manage their symptoms.

PainSpot Findings Presented at EULAR 2024

Researchers from GHLF, Northwester University, and University of Pennsylvania presented findings from a new study on polymyalgia rheumatica (PMR), which is often difficult to diagnose because its symptoms can be confused with other conditions. To address this, doctors and researchers used an online tool called PainSpot, which helps identify PMR symptoms by asking specific questions about neck, shoulder, and hip pain. This free tool provides possible diagnoses, guiding users to seek proper medical care faster. Initial tests showed the tool was accurate in identifying PMR, and it is now being used by more people to confirm its effectiveness.

If You Get Sick, Should You Pause Your DMARD?

A recent study looked at how patients with arthritis handle their medication during infections. Researchers in the Netherlands studied over 1,100 patients using immune-suppressing injections or infusions. They found that when patients had an infection, those who continued their medication had similar infection outcomes compared to those who temporarily stopped it until their infection cleared. Serious infections, like those needing hospital care, were seen in about 5 percent of those who paused their medication and about 4 percent of those who kept taking it. This suggests that for many patients, continuing their medication during infections could be safe. More research is needed to understand how different types of these medications affect infection risk.

The Link Between Osteoarthritis and Other Conditions

What is the relationship between osteoarthritis (OA) and other conditions? Dr. Weiya Zhang and colleagues at the University of Nottingham studied over 3.4 million patients across four countries (the Netherlands, the United Kingdom, Spain, and Sweden) to understand the relationship between OA and other health conditions. They found that people with OA were more likely to have chronic back pain, high blood pressure, allergies, cataracts, vertigo, depression, and diabetes.

The study revealed the top three conditions diagnosed before an OA diagnosis to be fibromyalgia, polymyalgia, and chronic back pain. After an OA diagnosis, the most common conditions diagnosed are fibromyalgia, rheumatoid arthritis, and polymyalgia. This insight suggests that some people might be underestimating OA. It’s a reminder to listen to your body and keep track of your symptoms.

Want to Get More Involved with Patient Advocacy?

The 50-State Network is the grassroots advocacy arm of CreakyJoints and the Global Healthy Living Foundation, comprised of patients with chronic illness who are trained as health care activists to proactively connect with local, state, and federal health policy stakeholders to share their perspective and influence change. If you want to effect change and make health care more affordable and accessible to patients with chronic illness, learn more here.