How Systematic Research Helped One Patient Manage Rheumatoid Arthritis

As a Patient-Centered Engagement and Insights Manager at the Global Healthy Living Foundation (GHLF) and someone living with rheumatoid arthritis (RA), fibromyalgia, and osteoarthritis, I have always found myself seeking reliable answers about my health.  

Over the years, I’ve juggled managing my conditions while advocating for others living with similar experiences. But it wasn’t until recently, while working on a clinical poster for the 2024 American College of Rheumatology (ACR) Convergence, a national conference with rheumatologists, researchers, industry representatives, and patients, that I truly learned the value of conducting a systematic literature review — and it has completely changed the way I approach researching my own health. 

Sharing My Work at ACR Convergence 2024

This year, I am extremely proud to have both a patient perspective poster and a clinical poster accepted for the ACR Convergence. The clinical poster highlights my work performing a systematic literature review on polymyalgia rheumatica (PMR) using the PRISMA method (Preferred Reporting Items for Systematic Reviews and Meta-Analyses). This method is a structured way to evaluate clinical studies, ensuring that only high-quality research is included. 

For the PMR project, I poured over dozens of clinical studies, evaluating them against stringent criteria to produce a comprehensive overview of the current knowledge on the condition.  

I quickly realized how much of a game changer this method could be for anyone trying to better understand their own health. I applied what I learned through the PMR review to my personal health care journey by researching quality articles in my quest to find answers to some lingering medical issues. 

My RA Journey and Search for Answers

Twelve years ago, when I was diagnosed with RA, I was hopeful that my first biologic DMARD (disease-modifying antirheumatic drug) would bring relief. However, I went through eight different biologics and biosimilars before finding a regimen that effectively managed my RA symptoms.  

Despite this, I started to develop gastrointestinal (GI) issues that puzzled my doctors and myself. After countless appointments, I was still left searching for answers. That’s when I realized I could use the same systematic approach from the PMR review to better understand my GI symptoms and their potential connection to RA. 

Shifting to a Structured Search

Traditionally, like many patients, I had relied on common search engines for my health research, clicking on the first articles that popped up. I didn’t realize I was missing a crucial layer of quality control. But after diving into the world of systematic literature reviews, I began to approach my research differently. 

Instead of relying on random online sources, I designed a structured search through PubMed, using clear criteria. I focused on the following questions: 

• What research supports or opposes a connection between RA and GI symptoms? (comorbidities, GI link) 
• What is causing the abdominal pain and gut problems that are affecting my quality of life? (triggers, quality of life) 
• How can I change my lifestyle to have fewer GI symptoms? (diet, treatment) 

Implementing What I Learned

I applied specific search filters to narrow the results to clinical trials, meta-analyses, and randomized controlled trials from 2010 to 2024. The result? I found 48 articles that seemed relevant, and after applying strict inclusion and exclusion criteria, I narrowed it down to 12 full-text studies, then further narrowed it down to four high-quality studies that matched my questions.  

Through this process, I learned a lot about the connection between RA and the gut microbiome. I discovered that while RA is often linked with inflammation, that inflammation can also impact the gut.  

After discussing my findings with my gastroenterologist and rheumatologist, we decided that a low FODMAP diet might help reduce my digestive discomfort. Since starting the diet, we’ve been closely monitoring how my gut health affects my overall inflammation, and I’m hopeful that this systematic approach will lead to better long-term results. 

Taking Charge of My Health Through Research

By using high-quality research, I have been able to have more productive conversations with my health care team. I now feel empowered to make informed decisions about my health, armed with knowledge from carefully vetted studies. It’s a shift in mindset — one that could benefit many patients who, like me, are looking for answers. 

This experience has been life-changing, and it all started with my work on the PMR review. Now, I encourage other patients to consider utilizing similar strategies to research their health conditions. Structured searches not only save time, but they also ensure that you’re getting the most reliable and relevant information, which is essential when managing complex chronic conditions. 

Through systematic literature reviews, I have taken back control of my health journey — and I believe you can, too. 

Be a More Proactive Patient with PatientSpot

PatientSpot (formerly ArthritisPower) is a patient-led, patient-centered research registry for people living with chronic conditions. By joining, you can participate in voluntary research studies about your health conditions and use the app to track your symptoms, disease activity, and medications — and you can share this information with your doctor. Learn more and sign up here.