Patient-Friendly News You Can Use: Special American of College Rheumatology Edition

The 2024 American College of Rheumatology (ACR) Convergence highlighted exciting new research that could transform health care. From innovative therapies for lupus treatment to technologies that are reshaping rheumatoid arthritis (RA) care, we’re spotlighting the research that matters most to you.

Explore how fitness trackers and smartphone apps could help monitoring for chronic conditions, learn what the latest findings say about polymyalgia rheumatica (PMR) treatments and long-term steroid use, and discover how patient voices are shaping care post-COVID. We’re also exploring the role weight management plays in easing arthritis symptoms and new guidelines aimed at improving lupus nephritis outcomes. Check out these updates to see how they could make a difference in your life.

Cutting-Edge Treatment for Lupus

A hot topic at ACR this year was CAR T therapy for systemic lupus erythematosus (SLE). This innovative treatment works by depleting B cells and resetting the immune system. A CAR, or chimeric antigen receptor, is like a specially designed “lock” created in a laboratory to match specific “keys” (proteins) found on certain cells. When the CAR finds its matching key, it sends a message to the immune system to take action, such as attacking harmful cells. T cells, a type of white blood cell, act as the body’s defense team, identifying and fighting off harmful invaders like viruses or cancer cells. When these T cells are “autologous,” it means they are taken from your own body, enhanced in a lab to work more effectively (like giving them extra tools), and then returned to your body to help fight disease. CAR T cell therapy combines these specially enhanced T cells with the CAR locks to better target and attack problematic cells, such as cancer cells or overactive immune cells in autoimmune diseases.

This is potentially exciting news for lupus patients and very encouraging for other autoimmune conditions like myositis and sclerosis.

Is PMR Treatment as Effective as It Could Be?

What if managing PMR could be safer and more effective? New research from the Global Healthy Living Foundation (GHLF) and Illumination Health, presented at ACR, sheds light on how PMR and its related condition, giant cell arteritis (GCA), are being treated in the U.S. These findings highlight areas where care could be improved. PMR is a chronic inflammatory condition that typically affects people over 50, often causing pain and stiffness in the shoulders and hips. GCA, which can occur alongside PMR, carries risks of more serious complications, such as vision loss. The research on PMR and GCA analyzed medical records and insurance claims to better understand how these conditions are being treated, especially focusing on the use of steroids and other medications.

“By looking at the prevalence of PMR and PMR with GCA across multiple data sources we are able to see clear patterns in the diagnosis and treatment of PMR,” said Laura Stradford, Associate Director, Patient Centered Research and Epidemiology, GHLF. “While most patients are receiving treatment in the form of steroids, we see very low levels of adjunct treatments that could help prevent long-term side effects.”

The findings revealed that while steroids are commonly prescribed for PMR and GCA, other treatments that could reduce the need for steroids — such as methotrexate and biologic medications like tocilizumab — are used far less often. This is important for patients because long-term steroid use can cause significant side effects, including bone loss, diabetes, and high blood pressure. By identifying these patterns, the study underscores the need for educating health care providers about alternative treatments that could help reduce the risks associated with prolonged steroid use. For patients, this research highlights the importance of discussing treatment options with their doctors to find the best plan for managing their condition.

How Fitness Trackers Could Transform RA Treatment

Imagine tracking your RA progress with just a smartphone app and a fitness tracker — and getting real-time insights into how well your treatment is working. A new study explores how digital health tools like these can make it easier to monitor RA symptoms while improving the accuracy of tracking treatment response. Researchers found that combining self-reported data, such as fatigue and pain levels, with wearable activity tracker data helped classify whether patients reached low disease activity or remission after starting new therapies.

This breakthrough matters because it reduces the burden on patients while giving doctors a clearer picture of how treatments are working in the real world. The wearable data even cut down on the need for frequent symptom reporting, making it a win-win for convenience and accuracy. This kind of technology could help patients feel more empowered and supported as they navigate their RA journey.

How Your Smartphone Could Revolutionize Arthritis Care

What if your smartphone could help improve your care for conditions like RA or psoriatic arthritis? A new study explores the use of Remote Therapeutic Monitoring (RTM), a technology that allows patients to share symptom updates with their doctors between visits using a smartphone app. The program not only helps patients track pain, fatigue, and other symptoms but also provides doctors with real-time data to make more informed decisions. RTM became popular during the COVID-19 pandemic, and this study shows how it can continue to benefit patients in managing chronic musculoskeletal conditions.

“By tracking patient-reported outcomes like pain and fatigue, remote therapeutic monitoring (RTM) creates opportunities for earlier interventions and more personalized care,” says Angela Degrassi, Senior Manager, Patient-Centered Research Operations & Engagement, GHLF. “This technology empowers healthcare providers to respond proactively to changes in a patient’s condition, potentially improving overall health outcomes. It also puts patients at the center of their care by giving them a convenient way to share insights about their health.”

The results are encouraging: most participants reported high satisfaction with the program, citing improved follow-up from their doctors and better tracking of disease changes over time as key benefits. However, some found it challenging to stay consistent with logging updates, which highlights the need for reminders and user-friendly systems. As this technology evolves, it has the potential to make managing chronic conditions more collaborative and effective, ensuring patients and doctors stay connected even between office visits. This innovation could make it easier to monitor your health and adjust your care plan as needed — right from the palm of your hand.

Managing More Than Arthritis? Common Health Issues

Did you know that if you have RA, psoriatic arthritis (PsA), or  or axial spondyloarthritis (axSpA), you’re likely managing more than just your arthritis? A new survey of nearly 2,000 people with these inflammatory arthritis conditions found that most live with at least one additional chronic condition — commonly osteoarthritis, obesity, or fibromyalgia. These overlapping health issues, known as comorbidities, can significantly impact daily life, making it harder to manage arthritis symptoms and overall health.

For patients, understanding the link between inflammatory arthritis and other conditions like asthma, osteoporosis, or eczema is critical. These comorbidities can complicate treatment and affect outcomes. The study emphasizes the importance of discussing your full health picture with your doctor — not just your arthritis — to create a treatment plan that works for you. This research sheds light on the need for more personalized care and points to areas where future treatments could help address these challenges.

How Patient Voices Are Shaping Arthritis Care Post-COVID

What matters most to you when it comes to managing your arthritis? A new study analyzing four years of patient-reported outcomes (PROs) reveals how people with RA, PsA, and axial spondyloarthritis (axSpA) prioritize their symptoms and track their progress. Over 6,300 patients contributed nearly 278,000 PRO assessments between 2020 and 2024, highlighting the importance of tracking issues like pain interference, physical function, and sleep disturbance. Interestingly, the highest number of assessments occurred during the third year, possibly reflecting shifts in health care practices, like telehealth, during the COVID-19 pandemic.

This research is a powerful reminder of the value of your voice in shaping arthritis care. The most commonly tracked symptoms — pain, mobility, and sleep — reflect the real-life challenges patients face every day. Insights from PROs can help health care providers tailor treatments to meet these priorities, while tools like flare assessments originally designed for RA are being explored for other types of arthritis, signaling a need for condition-specific solutions. By sharing what matters most to you, you play a key role in advancing more personalized and effective care.

Understanding PMR: What Do We Still Need to Know?

How well do we really understand PMR and its more complex counterpart, PMR with giant cell arteritis (GCA)? A new review of nearly six decades of research sheds light on what we know — and what we still don’t — about these conditions. This study combed through 127 high-quality articles to assess how PMR and GCA are diagnosed, treated, and managed, with a particular focus on patient outcomes. While most research has centered on treatment strategies and symptom relief, key areas like quality of life (QOL) and patient-reported outcomes (PROs) remain significantly under explored.

This review matters because it reveals gaps that directly impact patients. For example, better diagnostic tools could help distinguish PMR from GCA more quickly and accurately, reducing the need for invasive tests. The lack of studies on QOL and long-term outcomes highlights the need to focus on what truly improves patients’ daily lives, not just symptom management. This research encourages health care providers and scientists to prioritize studies that address the challenges patients face, aiming for more effective treatments and a better understanding of these conditions in diverse populations. For patients, it’s a hopeful step toward care that meets their real-world needs.

News About RA Treatments and Infections

Did you know that managing RA may not mean higher risks of common infections with certain medications? A new study involving RA patients found that biologic drugs, JAK inhibitors, and low-dose steroids do not appear to increase the likelihood of everyday infections, such as colds or sinus infections. Instead, factors like previous infections, living in rural areas, and overall physical health had a stronger connection to infection risk than the medications themselves. This finding is especially reassuring for patients using these therapies to control their RA.

Why does this matter? For patients, it means that continuing RA treatment during non-serious infections may not necessarily make things worse. The study also underscores the importance of managing other health factors, like comorbidities, which can play a larger role in infection risk. While the research suggests medications alone aren’t the primary culprit, patients should still discuss any infections or concerns with their health care provider to ensure the best approach for managing both RA and overall health.

How Common Infections Affect RA Medications

Do RA treatments increase your risk of common infections, like colds or sinus infections? A recent study involving 351 RA patients provides some reassuring insights. Researchers found that biologics, JAK inhibitors, and low-dose glucocorticoids were not linked to a higher risk of non-serious infections. Instead, factors such as previous infections, rural living, and the winter season played a bigger role. Over the course of the study, 28 percent of monthly observations reported infections, but these were not more frequent in patients using biologics or JAK inhibitors.

If you have RA, this could mean fewer worries about staying on treatment during cold and flu season. But the study also shows that other health issues and your surroundings can affect your risk of infection. It’s important to take care of your overall health and talk to your health care provider about any concerns. The research reminds us to find a balance — managing RA symptoms while avoiding unnecessary treatment breaks.

Why Patients Hesitate to Change RA Medications

Are you satisfied with how well your RA is controlled? A recent study involving over 26,000 RA patients found that while most were satisfied with their disease management, many who felt less than “very satisfied” were hesitant to discuss medication changes with their doctor. Among those less satisfied, 57.5 percent were interested in talking about adjusting their treatment, but more than half hadn’t done so in the past six months. The biggest barriers? Concerns about new medications not working, being unsure if better options exist, or feeling their current treatment was “good enough.”

This study is important because it shows that open communication with your health care provider is key to better managing RA. Even if you’re hesitant to discuss treatment changes, addressing your concerns about safety, efficacy, or practical issues can help you explore options that might improve your quality of life. For health care providers, the findings suggest a need to proactively engage patients in conversations about treatment adjustments, particularly those who may feel neutral or dissatisfied with their current care. If you’re feeling stuck with your RA management, this research encourages you to bring your concerns to your doctor — it could lead to a better approach tailored to your needs. 

New ACR Guidelines for Lupus Nephritis

What’s new in managing lupus nephritis? The American College of Rheumatology (ACR) has released its first updated guidelines for lupus nephritis since 2012, offering fresh insights into screening, treatment, and monitoring. These changes reflect a growing focus on combination therapies, including newly approved medications, which target multiple parts of the immune system. The goal? To preserve kidney function, reduce the risks of chronic kidney disease, and minimize the side effects of treatment.

Lupus nephritis affects nearly half of people with lupus and can lead to serious complications, including kidney failure. The updated recommendations include 28 graded recommendations (7 strong, 21 conditional) and 13 ungraded, consensus-based good practice statements (GPS) and stress screening for proteinuria, tailored treatment plans with newer medications, and lower doses of steroids to reduce long-term toxicity. Importantly, this is the first time ACR guidelines include specific advice for children and adolescents, ensuring better care across all age groups. These new strategies could mean improved outcomes and a better quality of life for those living with this complex condition. If you or someone you know has lupus, discussing these updates with your health care team could be a key step in optimizing your treatment plan.

Could Losing Weight Help Ease Arthritis Symptoms?

A new study suggests that patients with musculoskeletal and autoimmune diseases, such as RA and OA, may experience improved pain, fatigue, and overall quality of life after losing at least five percent of their body weight with the help of weight-loss treatment. The study analyzed nearly 25,000 patient records over an 18-year period and found that those who achieved significant weight loss reported better outcomes in disease activity and physical functioning, especially if they were living with obesity.

This research is important because it shows how weight management, particularly through medication-assisted therapies, could play a role in improving life with chronic conditions like RA or OA. For patients struggling with pain and fatigue, this could offer a new approach to managing symptoms alongside traditional treatments. However, the study also found that these benefits were not observed in individuals with a BMI under 25 or all patients with RA, suggesting that weight loss may have the most impact for those with obesity. These findings encourage discussions with health care providers about whether weight-loss strategies could complement your treatment plan and improve your quality of life.

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.