“The heartbreaking realities of health disparities were widely discussed at ACR,” says patient advocate Dawn Gibson. “It feels like we’re reaching consensus that diagnosis, treatment, and outcomes can vary widely by income and race. We might be getting to the end of the beginning of the health disparities conversation.”

Thankfully, identifying and addressing racial and socioeconomic health disparities are becoming a core part of the ACR meeting agenda. More than 30 research abstracts on these topics were presented (you can see a full list here and here). Two of the most popular and widely attended sessions during the meeting included one on implicit bias, with a presentation from Jillian Rose, PhD, Director of Community Engagement, Diversity, and Research at Hospital for Special Surgery, and one on microaggressions and gaslighting, with a presentation from Ashira Blazer, MD, Assistant Professor in the New York University School of Medicine Division of Rheumatology.

Below, you’ll find some notable research findings about health disparities, but as you read them, it’s important to put them in the right context. Ask the question: “How is racism operating to produce this disparity?” noted Dr. Blazer during her presentation. “When we measure racial differences in medicine, we are largely measuring the effects of racism. Whenever we see differences across race, the first thing we say can’t be, let’s find a gene for this, or let’s find a molecular signal for this, or what’s the difference in biology across the races?”

Dr. Blazer called for a multi-layered approach to tackling racial disparities in health care. “We have to understand the scope of the problem, we have to study it, we have to say ‘racism,’” she said, pointing out some important and tangible areas of focus:

• Journals have to prioritize this and invite good-quality data
• Physicians need to listen and understand the unique challenges patients face
• Doctors and trainees should be educated with comprehensive cultural competence and avoidance of bias
• Patients need to have agency as advocates, educators, and researchers
• Diversify and focus on recruitment, equity, and inclusion for rheumatologists and other related health professionals

A common theme that emerged was the importance of listening to patients and making them feel seen and heard, which Dr. Rose accomplished during the session on implicit bias when she addressed how explicit and implicit bias impacts different identity groups, such as race, ethnicity, weight, gender, and financial status.

“As a trans person I nodded along as she shared that many trans people don’t see a doctor when needed for fear of being mistreated — harassed, assaulted, or denied care — and often must educate their providers about trans literacy,” says patient advocate Charis Hill.

Dawn Gibson said that the research focus on disparities at ACR was validating in some ways, but challenging in many others.

“Disparities aren’t all in your head and it’s NOT personal. If you aren’t getting proper care it’s time to seek out additional guidance and resources from trusted peers and organizations. Some people will have to work harder than others to receive adequate care,” she says, while acknowledging that “disparities conversations can be demoralizing, especially when it feels like lots of people with great jobs and excellent health care musing about what other patients deserve to get, and how quickly.”

“This won’t stop me from working on it, but we have to recognize that this conversation is also deeply traumatizing,” says Gibson. “It’s important to honor that with self-care — and then get back to work.”

Here’s a look at some of the work done at ACR this year to help shed light on the disparities interfering with top-quality care for patients with rheumatic disease. For more research breakthroughs from ACR 2021, check out our main guide: 100+ Arthritis & Rheumatic Disease Updates You Need to Know.

1. Doctors are addressing differences in skin manifestations of disease in people of color

Lupus. Scleroderma. Psoriatic disease. So many rheumatic diseases have dermatologic involvement, but lack of knowledge about how diseases may present differently on different skin tones can lead to staggering delays in diagnosis, misdiagnosis, and poor treatment. A popular ACR session, presented by Brigham and Women’s dermatologist Ruth Ann Vleugels, MD, addressed specific examples of how the same disorder can present differently in skin of color, but that’s just the beginning of addressing disparities.

“It’s not just about recognizing patterns, it’s about improving diagnostic skills and patient outcomes,” according to Lisa Zickuhr, MD, Assistant Professor of Medicine within the Division of Rheumatology at Washington University School of Medicine, who moderated the session in ACR Convergence Today.

“Patients of color disproportionately suffer from the skin manifestations of lupus and many other rheumatic diseases. Many factors contribute to this disparity, some of which are beyond the rheumatologist’s ability to change. But it is possible to improve clinicians’ skills and comforts in assessing rashes and other skin changes in patients of color.

“This session was a down payment on raising awareness of the institutional barriers patients with darker skin face in establishing a dermo diagnosis and obtaining proper treatment,” says Gibson, who has been advocating and raising awareness for years on this very topic. “We don’t see enough darker skin featured, and that’s a big deal in the U.S. and for global health. Darker-skinned patients might want to consider asking their providers to get them featured in medical training materials. They don’t owe this, and it’s wrong to make any patient feel obligated to do so. But this is something that will leave a lasting impact on medicine and a legacy for everybody with darker skin tones.”

2. Rheumatoid arthritis disease activity and function varies widely across racial and ethnic groups

A large study presented at ACR quantifies what many providers and patients have already long suspected: that Black and Hispanic RA patients often have higher disease activity and worse functional status than white patients. Using data from the CorEvitas registry, which has more than 56,000 RA patients living in 42 U.S. states, researchers looked at a group of people who had at least two provider visits over the last several years. Of the 9,363 participants in the study, most were female, white, and in their late 50s: 8,142 were white, 527 were Black, 545 were Hispanic, and 149 were Asian.

The researchers found various disparities among the groups. Among them: Black and Hispanic patients had worse functional status scores than white patients throughout the study. While disease activity generally improved for patients over time, Hispanic patients improved less than white patients.

“Our study was designed to evaluate clinical outcomes, and unfortunately does not address issues related to access to care,” study coauthor Jacqueline O’Brien, PhD, a clinical epidemiologist at CorEvitas, said in a press release. “We saw that all patients demonstrated improvement over time, but even after adjustment for potential confounding variables, such as the study site, prior and current biologic use, insurance status, education, there were still differences between the racial and ethnic groups at the second time point.

Many factors contribute to health inequity, including access to care, socioeconomic status, systemic racism, and other social determinants of health. Certainly, more research is needed to understand how these factors interact and result in different clinical outcomes for racial and ethnic groups.”

3. Insurance (and how it affects access to care) is associated with rheumatoid arthritis disease burden

Noting that successful RA therapy is dependent on access to specialty care, insurance coverage, and effective management of associated comorbidities, researchers sought to study how access to care and disease burden varies among RA patients across different U.S. regions. They used data from a national registry that is maintained by the American College of Rheumatology, called RISE, looking at 182,722 RA patients from 182 different locations across the U.S.

The main takeaway: Disease activity was higher in Black patients, those in the South, and those with Medicaid/Medicare coverage. Having Medicaid insurance was associated with less access to care: Fewer than 20 percent of rheumatology practices were caring for more than 50 percent of RA Medicaid patients.

“Medicaid is an essential lifeline for disabled, family caregivers, and other low-income patients, but many rheumatology practices don’t take Medicaid patients,” says patient advocate Dawn Gibson, who lives with ankylosing spondylitis and anemia. “Now is the time for bold, innovative approaches to increase patients’ access to specialty care.”

Gibson notes that it’s easy for patients to get worn out while seeking specialists, but you have to keep going, despite it being hard. “I’ll ask my [hematology] office for more help accessing care. It’s a combined hemo-onco practice, with a large staff. They have the resources to run down Medicaid-friendly providers.”

4. Telemedicine use during the COVID-19 pandemic is affected by patients’ race, English language proficiency, and more

Virtual and digital care — including access to telemedicine and usage of electronic patient portals — have been a lifeline to many rheumatic disease patients throughout the COVID-19 pandemic. But researchers from the University of Washington and George Washington University revealed important insights about disparities in the utilization of this technology.

Examining data on 1,442 patients who had 3,406 visits — a mix of in-person, telemedicine, and telephone — between April 2020 and March 2021, they found that white patients were more than two times as likely as Black or American Indian/Alaska Native patients to use telemedicine. Those who preferred to speak English were more than three times as likely to use telemedicine as those who preferred Spanish or other languages. White and English-speaking patients were also significantly more likely to use electronic patient portals than other groups.

Study coauthor Jenna L. Thomason, MD, MPH, a rheumatologist at University of Washington Medicine, noted in a press release that more research on disparities in telehealth is needed, given the likelihood that telehealth will become an increasingly important way of delivering care in the future, particularly research that can identify what’s causing these differences in telehealth usage.

“This type of research is critical for shaping interventions aimed at correcting inequalities,” Dr. Thomason said. “If perceptions about utility and privacy are barriers to telehealth use among certain racial and ethnic groups, then targeted educational outreach could be helpful.”

5. Systemic sclerosis symptom severity and disease prognosis is worse in Black patients

Systemic sclerosis is a rare autoimmune disease that affects the skin as well as internal organs. It disproportionately affects women and health disparities have been noted in Black systemic sclerosis patients, with worse disease outcomes relative to other racial/ethnic groups.

Researchers from the Medical University of South Carolina looked at a group of 372 systemic sclerosis patients from their medical center; about 40 percent were Black and 80 percent were female. They found that Black patients developed the condition at a significantly younger age than those in other racial or ethnic groups, and females tended to develop the disease at a younger age than males.

When they compared disease outcomes for diffuse cutaneous systemic sclerosis, renal crisis, interstitial lung disease, and restrictive lung disease, all serious manifestations, they found that Black patients had a statistically significant increased risk for all but renal crisis compared to non-Black patients.

The researchers also looked at social determinants of health that might impact these outcomes and found two significant ones: private health insurance and being a high school graduate, both of which were less common among Black patients than others.

“Even when controlling for disease duration, outcomes like mortality, pulmonary hypertension, interstitial lung disease, and diffuse disease continued to be significant. This means that being Black was associated with worsened outcomes no matter how long the patient had systemic sclerosis. This may affect how clinicians care for their Black patients with systemic sclerosis, as well as possibly encouraging them to involve other specialists earlier,” study co-author Sarah M. Compton, MD, a rheumatologist at Medical University of South Carolina, said in a press release.

As a next step, the research team plans to interview people to learn more about the social determinants affecting their health, which they hope can help inform interventions to improve care.

6. Hispanic patients with systemic sclerosis have more severe disease

A separate study on systemic sclerosis, from University of Texas researchers, shed light on unique disease burdens in Hispanic patients. Researchers looked at a group of 427 people with systemic sclerosis that included white, Hispanic, and Black patients.

They found that the disease manifestations and prognosis were different in Hispanic patients compared with other groups: They were more likely to be positive for RNP, an autoantibody involved in systemic sclerosis; have lupus-like symptoms, and have lower lung volume — a sign of worse disease.

Hispanic patients less often had widespread skin involvement and had milder skin involvement than Black patients. They had higher mortality than white patients but not Black patients. Differences in mortality between Hispanic and white patients persisted even after researchers adjusted for income and education level.

7. Poor outcomes with lupus nephritis are affected by your race and where you live

Lupus nephritis, or lupus that affects kidney function, is a more serious form of the disease. While deaths from lupus nephritis have thankfully dramatically decreased overall over the last 20 years, a study from researchers at University of California Los Angeles shows that these improvements have not been shared equally among different racial and ethnic groups.

They found that deaths from lupus nephritis decreased by 26 percent over the last 20 years, but LN deaths among Black patients were six times greater than that of white patients and more than two times greater than that of other race/ethnic groups. Black patients accounted for 38 percent of the lupus nephritis deaths, despite representing only 12.8 percent of the U.S. population.Hispanics, American Indians, Alaskans, and Asia Pacific Islanders were also found to have higher death rates than white patients.

Perhaps surprisingly, the highest mortality for lupus nephritis occurred in large metropolitan areas relative to other environments, which suggests more research is needed on how neighborhood environmental factors affect health outcomes.

“These findings need an explanation,” wrote Janet Pope, MD, in an article on RheumNow. “A deep look at unconscious biases of health care workers and health system failures is also warranted, as very few polygenic changes will account for 6 times higher discrepancies in mortality.”

Researchers also noted that “studies are urgently needed to understand reasons underlying these disparities and the recent worsening trend.”

8. There are significant racial gaps in kidney complications for children with lupus

Though it is known that Black patients are disproportionately affected by childhood lupus, researchers wanted to better understand whether gaps in outcomes may be changing as pediatric lupus care has advanced in recent years. Using a large health database, researchers identified 7,434 people with lupus under age 21 who were admitted to the hospital at least once since 2006.

Over a 13-year period, the proportion of anyone being hospitalized for serious kidney-related complications (including dialysis or a diagnosis of end-stage renal disease) decreased. But Black children remained significantly more likely to have an adverse renal outcome compared to white children. Black and Asian children were also more likely than white children to be hospitalized for their first occurrence of an adverse renal outcome.

The researchers also looked at the population makeup of the hospitals where children were treated and found disparities in outcomes between hospitals where the majority of the pediatric lupus patients were Black or Hispanic and those where the majority were white.

“This focus on improving care quality to reduce treatment variation alone is likely not going to be sufficient to close the gap in racial disparities,” study coauthor Joyce Chang, MD, Assistant Professor of Pediatrics at Children’s Hospital of Philadelphia told Healio Rheumatology. “We actually need to understand the root causes of racial inequities in order to identify processes that would preferentially target improved outcomes among highest risk groups. The population-based estimates can only provide so much information, especially with the type of health system data we have to date.”

9. We can’t ignore the effects of unemployment and poverty on people living with rheumatic disease

“Are you poor because you’re sick or sick because you’re poor?” Edward Yelin, PhD, professor in the Institute for Health Policy Studies at the University of California, San Francisco Medical School, asked this thought-provoking question during a keynote address about the intersection of unemployment, poverty, and chronic disease outcomes in diseases like rheumatoid arthritis and lupus.

He went on to summarize an extensive body of his research that has revealed two key points, as Healio Rheumatology reported: “One is that reduced health status is still one of the most common routes to poverty; the other is that musculoskeletal conditions are the most common cause of work loss.”

Dr. Yelin raised some really interesting points about the importance of being able to work — not just for financial reasons, but for deeper ones related to quality of life, identity, and feeling well. “Outcomes of RA and lupus are contingent upon interaction with a job, and not necessarily contingent upon severity of disease,” he said.

However, some 35 to 40 percent of people with RA and lupus have left the workforce after a decade of living with their disease. For patients with lupus, who are typically diagnosed at young ages, this means they are leaving the workplace at the prime of their career, which can have a profound impact on the rest of their lives. Dr. Yelin went on to connect lack of employment with poverty, which is associated with poor outcomes in rheumatic disease.

Dr. Yelin’s presentation speaks to the incredibly challenging chicken-egg aspect of managing rheumatic disease, employment, and poverty. Being poor and sick makes it hard to access care and get better control of your disease, which in turn makes it that much harder to keep working, thus creating a vicious cycle for vulnerable and underserved patients.

Get Involved with CreakyJoints and the Global Healthy Living Foundation

Be Part of Research with ArthritisPower

Join CreakyJoints’ patient-centered research registry and participate in voluntary studies about managing arthritis. You will have opportunities to lend your unique perspective to patient-centered research. Learn more and sign up here.

Become a Patient Advocate

Want to fight for policies to address health disparities and equitable health care? The 50-State Network is the grassroots advocacy arm of CreakyJoints and the Global Healthy Living Foundation. It is composed 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 equitable, affordable, and accessible, learn more here.

You can participate in research studies about arthritis by using our ArthritisPower app to join our patient-centered research registry.

At the American College of Rheumatology/Association of Rheumatology Health Professionals Annual Meeting this year — ACR Convergence 2021 — more than 16,500 attendees and 600 speakers from more than 100 countries gathered virtually to share the latest research and address the most pressing issues for people living with rheumatic disease.

The CreakyJoints team soaked it all in — listening, watching, and learning so we could bring you the most relevant information to ensure you know what you need to better manage your condition and get better care.

We combed through hundreds of studies, attended sessions from top axSpa experts, and asked our team of patient and physician advisors to share the axSpa updates they deemed most important for patients.

Note: Axial spondyloarthritis is an umbrella term for a type of inflammatory arthritis that predominantly causes symptoms in the spine and pelvis. It includes two conditions: ankylosing spondylitis (in which there is joint damage that you can see on X-rays) and non-radiographic axial spondyloarthritis, which has similar symptoms but no damage is visible on X-rays. We will be using all three terms throughout this article.

The result: Our curated, patient-friendly guide to axSpa research and trends from ACR 2021. For more research breakthroughs from ACR 2021, check out our main guide: 100+ Arthritis & Rheumatic Disease Updates You Need to Know.

1. Undiagnosed depression is common in axSpA.

Knowing that mental health conditions like depression are common in people with axial spondyloarthritis, researchers in Ireland screened 71 axSpA patients for depression during routine rheumatology visits, then looked at whether the results were connected to patients’ reports of disease activity and quality of life measures. They only included patients who did not already have a known diagnosis of depression.

They found that up to 24 percent of people had survey scores that were indicative of underlying depression. These patients also had worse disease activity and quality of life than those with normal scores on the depression surveys.

The researchers suggest that rheumatology providers should actively screen for depression in axSpA patients. One of the screening tools in the study is called the Hospital Depression and Anxiety Scale. If you’re concerned about whether you may have undiagnosed depression or anxiety, consider reviewing the questions with your provider so you can get help.

2. How many non-radiographic axSpA patients progress to ankylosing spondylitis?

We know now that within the axial spondyloarthritis family of diseases, there are two main kinds: non-radiographic and radiographic (known as ankylosing spondylitis). Both diseases are thought to cause similar symptoms and disease burden; the difference being that with nr-axSpA, there is no visible joint damage on X-rays — yet.

Of course, it’s better to not progress to radiographic axSpA, and experts are currently studying how to prevent this disease progression. The first step, though, is understanding how common progression is and what the timeline looks like. When Dutch researchers followed a group of 79 nr-axSpA patients over six years, they found that every two years approximately 10 percent progressed from nr-axSpA to AS.

The researchers plan to continue to study patient and disease characteristics to learn more about who may be more likely to progress; these patients might benefit from more aggressive treatment, such as starting biologics earlier.

3. There’s a notable lack of axSpA awareness among primary care providers

Diagnostic delays of 10 or more years are common in axial spondyloarthritis. A substantial factor is that people often go undiagnosed or misdiagnosed because other health professionals don’t suspect that their back pain and other symptoms could be due to axial spondyloarthritis, and they don’t get referred to a rheumatologist.

Researchers from Yale University and the University of Connecticut surveyed 138 primary care providers about axial spondyloarthritis (three-quarters were doctors; one-quarter were advanced practitioners, such as nurse practitioners.) Among the findings:

• 96% were at least familiar with the term inflammatory back pain, but 58% never or rarely assess it.
• 83% rarely or never order a test for HLA-B27, a genetic marker associated with axSpA
• 65% rarely or never order a test for C-reactive protein (CRP) in young patients with chronic back pain
• At least 75% never asked about uveitis or enthesitis, which are associated with axSpA
• 50% never or rarely ask about family history of spondyloarthritis

These findings indicate that there is a lot of room for improvement in educating primary care providers about axSpA symptoms and ordering tests to help diagnose it. It also shows how much people with inflammatory back pain and other axSpA symptoms need to advocate for themselves as they navigate the journey to getting diagnosed.

One way to push for better care is to ask your provider: “Are you sure my symptoms couldn’t be due to inflammatory back pain or axial spondyloarthritis?” or “Are you sure there aren’t any blood tests or imaging tests that can help figure this out?”

4. Many axSpA patients in remission may successfully taper biologics without experiencing flares

Of course, getting to remission — when you have low disease activity according to both patient and physician assessments — in the first place is not an easy feat with axSpa. But among those who do, can they safely stop taking biologic medication?

A study from Denmark sheds some insight on this very important question. Researchers identified a group of about 100 axSpA patients in remission for at least a year who were taking TNF biologics and had them gradually taper their medication over the course of a year, then followed the patients for two years. They found that about half had successfully tapered completely. Among the other half, patients were able to stay in remission on various lower doses even though they didn’t stop medication completely.

When researchers looked at which characteristics were associated with successful tapering, they found one strong predictor: physician global score. In other words, patients whose doctors assessed their disease activity to be low were able to successfully taper their medications.

5. Unemployment and challenges with working are very common in axSpA

People with axSpA may have debilitating back pain from a young age, which can affect them during their prime working years. New research at ACR explores and, importantly, helps quantify these issues.

In a study from Ireland, researchers looked at a national registry of people with AS. Among the 876 people for whom information was available about their employment status, about 22 percent were unemployed, which was much higher than the national average of 6 to 13 percent over the same time period. Another 24 percent of people said their axSpA limited their work ability.

What’s more, the use of advanced therapies was high among people who were unemployed — 75 percent reported taking biologics. Researchers called attention to one particular predictor of unemployment: reduced spinal mobility, noting that identifying this early and getting occupational or physical therapy supports might help keep patients working.

In separate research from an online survey of more than 1,800 axSpA patients spanning 13 different European countries, about three-quarters said that they had difficulty or thought they would have difficulty finding a job because of their axSpA. Though many different factors played a role, some worth paying attention to include challenges taking public transportation, needing customized shoes, not having university education, and having had to previously change jobs because of axSpA-related barriers.

If you’re struggling to work because of axSpA, research like this is important to be aware of if you’re trying to get workplace accommodations. It quantifies and validates the very real challenges this disease presents.

6. Artificial intelligence is coming to axSpA — and it may help standardize and speed up diagnosis

Diagnosing axSpA can be tricky for many reasons. Not least of which is that interpreting X-rays of the sacroiliac joint (the joint that connects the spine and the pelvis, where inflammation and damage in axSpA frequently starts) can vary widely depending on who is looking at the films and how much experience they have identifying sacroiliac joint damage.

One study out of Germany that got a lot of attention at ACR this year found that using what researchers called an “artificial neural network” — a form of machine learning — to read the X-rays of people with suspected axSpA could accurately diagnose the condition with good sensitivity (79 percent) and very good specificity (94 percent) compared to consensus judgement from a rheumatologist and radiologist reading the same X-rays. (High specificity means the artificial intelligence was particularly good at ruling out false positives, or diagnosing people with something when they don’t actually have it.)

In the future, doctors may be able to rely on this technology to streamline the process of diagnosing axSpA with X-rays, which is less expensive than using MRIs. It could also provide diagnostic expertise to places that wouldn’t otherwise have it, such underserved or rural areas.

7. Evaluating Crohn’s disease patients for inflammatory back pain can identify axSpA earlier

Axial spondyloarthritis and inflammatory bowel disease, such as Crohn’s disease, often strike together, so it makes sense to keep an eye out for the other when you’re diagnosed with one.

University of Chicago researchers wanted to see if they could identify signs of inflammatory changes associated with axSpA when patients were getting imaging (MRE) of their small intestine. Of 48 patients studied, 25 percent had abnormal sacroiliac joint inflammation detected on imaging. Most of these people were female, had intestinal damage from Crohn’s disease, and did not report symptoms of back pain.

The researchers suggest that MRE scans should be routinely evaluated for musculoskeletal abnormalities, which may be a unique way to identify asymptomatic or early-stage axSpA in people with Crohn’s disease while they are getting gastroenterology care.

8. A high proportion of ankylosing spondylitis and psoriatic arthritis patients use opioids as part of treatment

While opioids may have a place in pain management for certain rheumatic patients and certain circumstances, they don’t address the underlying causes of pain the way other treatments do. In conditions like axial spondyloarthritis and psoriatic arthritis, for example, NSAIDs can address inflammation and biologics may help prevent disease progression.

Researchers, led by Alexis Ogdie, MD, from the University of Pennsylvania, looked at a patient database to better understand the prevalence of opioid use and connection to disease burden. They found that about 21 percent of psoriatic arthritis patients (out of 828 total) and about 27 percent of ankylosing spondylitis patients (out of 334 total) received opioids. Patients were also using other treatments, such as NSAIDs, DMARDs, and biologics, so the opioids were likely in addition to, not instead of.

Increased opioid use was associated with higher disability and disease activity scores, which makes sense — people who are feeling worse and have more pain would be more in need of pain relief options.

The study reveals that many patients still experience chronic pain despite getting treatment for inflammation, which highlights the need for better pain management in these conditions.

9. Having more comorbidities with AS may affect disease burden as well as staying on treatment

Chronic diseases like axial spondyloarthritis don’t exist in a vacuum. Many people have additional medical conditions — known as comorbidities — that can affect their ability to manage their rheumatic condition for a variety of reasons. Spanish researchers shed more light on this issue by analyzing data on a group of 749 people with AS and following them over two years.

They found that people with more comorbidities had worse scores on self-assessments of pain and disease activity. What’s more, people with more comorbidities had a higher likelihood of stopping treatment (TNF biologics) for AS than those with fewer comorbidities.

The study didn’t get into details about which comorbidities might be more associated with treatment discontinuation or worse outcomes. However, research like this highlights the fact that it’s necessary to consider the whole patient when treating a chronic condition like AS. And the more rheumatologists and patients know about how and which comorbidities can affect care and outcomes, the more effectively they can manage someone’s AS.

It also speaks to the importance of making sure that you see a primary care provider and other specialists as necessary to identify and manage comorbidities, since it’s often not possible for the rheumatologist to do so.

You Can Participate in Axial Spondyloarthritis Research Too

If you are diagnosed with axial spondyloarthritis or another musculoskeletal condition, we encourage you to participate in future studies by joining CreakyJoints’ patient research registry, ArthritisPower. ArthritisPower is the first-ever patient-led, patient-centered research registry for joint, bone, and inflammatory skin conditions. Learn more and sign up here.

You can participate in research studies about arthritis by using our ArthritisPower app to join our patient-centered research registry.

At the American College of Rheumatology/Association of Rheumatology Health Professionals Annual Meeting this year — ACR Convergence 2021 — more than 16,500 attendees and 600 speakers from more than 100 countries gathered virtually to share the latest research and address the most pressing issues for people living with osteoarthritis. 

The CreakyJoints team soaked it all in — listening, watching, and learning so we could bring you the most relevant information to ensure you know what you need to better manage your condition and get better care.

We combed through hundreds of studies, attended sessions from top osteoarthritis experts, and asked our team of patient and physician advisors to share the osteoarthritis updates they deemed most important for patients.

The result: Our curated, patient-friendly guide to osteoarthritis research and trends from ACR 2021. For more research breakthroughs from ACR 2021, check out our main guide: 100+ Arthritis & Rheumatic Disease Updates You Need to Know.

1. Non-drug therapies like physical therapy are underutilized in patients who should take precaution with NSAIDs

It’s pretty standard for people with knee and hip osteoarthritis to take non-steroidal anti-inflammatory drugs (NSAIDs) or opioids to manage OA pain.

In fact, “roughly 50 percent of people with OA are prescribed NSAIDs and more than 50 percent are prescribed opioids,” Boston University rheumatologist Jean Liew, MD, told CreakyJoints.

But what about those patients who can’t use these drugs due to contraindications or the need to take precautions because of comorbidities? Are we underutilizing other first-line approaches, like physical therapy (PT), in this group?

This study by researchers at Boston University School of Medicine aimed to assess differences in patterns of NSAID, opioid, and physical therapy (PT) among more than 30,000 newly diagnosed patients with knee OA (21,682 people) and hip OA (9,124 people). Nine percent had NSAID contraindications (should not use NSAIDs at all) and 22 percent NSAID precautions (should be careful when using NSAIDs), explained Dr. Liew.

The findings: “Physical therapy use was slightly lower among those with NSAID contraindications or precautions,” says Dr. Liew. “In adjusted analyses, those with contraindications or precautions to NSAIDs were at 1.2 to 1.5 times higher risk of opioid prescriptions than those without, while use of physical therapy was not increased for any group.”

So what does this mean for you? If you can’t safely take NSAIDS and your physician prescribes opioids, it’s a good idea to also ask about physical therapy. It’s an alternative treatment option that is often underused for at-risk patients.

2. People with hip OA may change their gait in ways that can lead to walking deficits and possibly arthritis in other joints

If you have hip osteoarthritis, it’s likely that you’ve relied on other muscles or parts of the body at one time or another to compensate for the pain and fatigue in your hips. But can this type of movement compensation lead to deficits in physical performance, muscle, strength, and fatigue over time?

Researchers at Salt Lake City Health Care System and Utah University studied 35 patients with end-stage hip osteoarthritis to determine if trunk movement compensation had a negative influence on physical function and fatigue.

After measuring the biomechanics of the patients, using a six-minute walking test, researchers found that weaker hip abductor muscles led to more compensation with excessive torso movement when walking. This could be a potential mechanism for accelerating arthritis onset in other joints, noted researchers.

3. Patients want to walk better and without gait aids post knee replacement surgery

What do knee osteoarthritis patients want out of surgery?

In a University of Toronto study, nearly 300 patients were surveyed to determine their expectations when it comes to walking improvements after a total knee replacement (TKA) surgery.

According to the study, 97.5 percent of patients want surgery to improve their ability to walk (preferably medium-to-long distances). Of those who use a gait aid (such as a cane), 84 percent want surgery to remove the need for an aid. However, when surveyed 12 months after their surgery, only two-thirds of patients reported the ability to walk long distances post-surgery.

It’s a good reminder to talk to your health care provider about your surgery goals and expectations, this way you’re prepared mentally and physically post-knee replacement.

4. Knee replacement surgery help improve your mental health

It’s certainly not news that there’s a link between physical pain and mental health — but if you treat the pain of knee OA with joint replacement surgery, will depression and anxiety improve too?

Research from the same University of Toronto team suggests the answer is yes. Researchers assessed self-reported pain scores as well as levels of anxiety or depression in 1,259 patients with knee osteoarthritis before and 12 months after total knee replacement surgery: More than two-thirds of participants reported a decrease in anxiety and depression after surgery. Perhaps not surprisingly, patients with less self-efficacy and worse knee pain post after surgery did not show mood improvements.

The takeaway: Living with painful symptoms takes a mental toll, so it’s important to work with your health care provider to explore treatment options to get the pain relief you need.

5. CBD did not show pain-relieving effects for patients with hand OA and psoriatic arthritis.

Can cannabidiol (CBD) ease pain symptoms in hand osteoarthritis or psoriatic arthritis? New research casts some doubt.

To determine if CBD has any analgesic [pain-relieving] effects, researchers enrolled 129 patients with hand osteoarthritis and psoriatic arthritis without active inflammation. For the placebo-controlled study, participants were given 20 to 30 mg of CBD or matching placebo for 12 weeks.

The results: There was no significant difference in pain, sleep quality, depression, anxiety, or pain catastrophizing after 12 weeks on CBD. In fact, in patients who showed a greater than 50 percent decrease in pain, 25 percent were given CBD and 27 percent were given a placebo, rheumatologist and epidemiologist Richard Conway, MD, said in a RheumNow video.

“CBD has been investigated for its potential effects in anti-inflammatory and pain control across a variety of diseases, including rheumatic diseases,” said Dr. Conway. “CBD at these doses had no effects as far as analgesic [pain relieving] benefit [for patients]  — and there’s a high placebo rate so it’s likely that some patients using CBD will find an improvement.”

6. Managing both type 2 diabetes and osteoarthritis can be tricky for patients

Research shows that people with type 2 diabetes are more susceptible to developing osteoarthritis, partly due to obesity and aging, which are shared risk factors for both conditions. However, there’s limited information when it comes to how patients feel about managing these two chronic conditions together.

An ACR study by researchers at the University of Toronto and Women’s College Hospital explored experiences of people with knee OA and type 2 diabetes. The researchers recruited 18 patients (who had lived with both conditions for roughly a decade or more) and conducted semi-structured telephone interviews.

Here are a few key findings: ​​

• OA pain makes it difficult to engage in prescribed physical activity and get sleep, which patients think negatively impacts their blood sugar control.
• Patients prioritize osteoarthritis over diabetes care because it reduces their ability to participate in activities and negatively impacts emotional well-being.
• On the other hand, doctors pay more attention to diabetes than osteoarthritis, so patients must coordinate and advocate for their care.

The researchers hope that these findings lead to “greater recognition by health professionals of the impact of knee OA in persons with type 2 diabetes,” which, in turn, can improve both diabetes care and quality of life.

7. People with atopic disease (asthma and eczema) have an increased risk for osteoarthritis

Studies have shown that atopic disease is a risk factor for rheumatoid arthritis and inflammatory bowel disease — and now new research suggests a link with osteoarthritis.

A large study used data from electronic medical records databases to identify 35,097 patients with asthma, 77,854 patients with atopic dermatitis (eczema), 4,395 patients with both conditions, and 2,242,901 control patients without any atopic disease. Among the findings, they observed an 84 percent increased risk of people with both asthma and atopic dermatitis developing osteoarthritis compared to the general population.

“Our findings provide further evidence that allergic pathways may contribute to the development of OA, and future interventional studies could consider targeting these pathways for the treatment of OA,” wrote researchers.

8. Skipping stair climbing is linked with a decrease in function in knee OA

Stair climbing may be the last thing you want to do when you have painful knee osteoarthritis, but this everyday activity might be key to your future health. 

A new study of patients with knee OA found that lack of stair climbing may increase the risk of worsening function. This includes having slow gait speed, which has a strong relationship with hospitalization and early mortality.

Researchers from the University of Delaware and Massachusetts General Hospital found that adults with knee OA who decreased their stair climbing over two years (below five days per week), or who had fluctuating patterns of stair climbing were at risk for developing a slow gait speed.

“Given that stair climbing is a high-demand functional task, the stark increased risk in worsening function (via slow gait speed) over a short period of time is of concern,” wrote researchers. “Adults with knee OA who report decreased stair climbing are prime targets for early intervention to prevent future loss of general function.”

You Can Participate in Osteoarthritis Research Too

If you are diagnosed with osteoarthritis or another musculoskeletal condition, we encourage you to participate in future studies by joining CreakyJoints’ patient research registry, ArthritisPower. ArthritisPower is the first-ever patient-led, patient-centered research registry for joint, bone, and inflammatory skin conditions. Learn more and sign up here.

At the American College of Rheumatology/Association of Rheumatology Health Professionals Annual Meeting this year — ACR Convergence 2021 — more than 16,500 attendees and 600 speakers from more than 100 countries gathered virtually to share the latest research and address the most pressing issues for people living with rheumatic disease.

The CreakyJoints team soaked it all in — listening, watching, and learning so we could bring you the most relevant information to ensure you know what you need to better manage your condition and get better care.

We combed through hundreds of studies, attended sessions from top RA experts, and asked our team of patient and physician advisors to share the rheumatoid arthritis updates they deemed most important for patients.

The result: Our curated, patient-friendly guide to rheumatoid arthritis research and trends from ACR 2021. For more research breakthroughs from ACR 2021, check out our main guide: 100+ Arthritis & Rheumatic Disease Updates You Need to Know.

1. The biologic abatacept (Orencia) may help reverse early-stage rheumatoid arthritis

Rheumatoid arthritis doesn’t strike overnight. Rather, it’s thought to progress over time, starting with a “pre-clinical” stage where people have certain antibodies associated with RA (such as anti-cyclic citrullinated protein, or anti-CCP) and mild symptoms like some joint pain. Can intervening at this stage help prevent progression to RA? Abatacept (Orencia) is a biologic drug that blocks T cells in the immune system. T cells can play a role in triggering autoimmune inflammatory diseases like RA, so interventions that stop this process may help prevent RA.

At ACR, European researchers shared the results from a randomized controlled trial of 100 patients at risk of developing RA (they were positive for anti-CCP antibodies and had signs of inflammation on MRI). Half were given abatacept and half got a placebo for six months, then the patients were followed for a year.

They found that about 60 percent of people in the treatment group showed signs of improvement on MRI inflammation compared to about 30 percent of people in the placebo group. Arthritis developed in 17 people on placebo but only in four on abatacept.

The results suggest that intervening early could delay or prevent the onset of RA in those at high risk for it.

“Why do we wait until someone has really fully established rheumatoid arthritis before we start treating?” rheumatologist Arthur Kavanaugh, MD, said about the research in a video on RheumNow. “We don’t do that with cardiovascular disease. We don’t wait until someone has their first MI [heart attack] to start lowering their cholesterol.” The challenge, he acknowledges, is that the earlier in the course of disease someone is, the harder it is to know if it truly is preclinical RA, which could lead to a risk of over-treating.

2. ‘Fibromyalgianess’ with rheumatoid arthritis is linked with using long-term steroids

Research shows over one-third of people with RA show “fibromyalgianess” — a cluster of symptoms associated with greater sensitivity to pain. While disease-modifying drugs can treat some RA pain, they’re not as helpful for pain that is unrelated to disease activity. This may spur people with fibromyalgia-related pain to use other medication to treat their lingering pain.

A team of researchers, led by Beth Wallace, MD, of the University of Michigan, studied how fibromyalgianess might affect the use of glucocorticoid medication in about 100 RA patients who were on prednisone when the study began. They found that 57 percent of people with low fibromyalgia symptoms were still on steroids three months later, compared to 84 percent of those with high or very high fibromyalgia symptoms.

Because they also looked at participants’ swollen joints and levels of C-reactive protein, researchers could take into account disease activity. They found that “high fibromyalgianess” is associated with persistent steroid use, independent of inflammatory activity. The findings suggest that non-inflammatory pain from fibromyalgia may be misclassified as being related to inflammation, causing patients to take long-term steroids perhaps unnecessarily.

3. Low-dose rituximab may work well people with rheumatoid arthritis in low disease activity

Rituximab is a biologic medication typically used for people with hard-to-treat rheumatoid arthritis, typically given every six months. According to Dutch research presented at ACR, people who are in low disease activity on rituximab can remain there on a much lower dose of medication. They randomized 118 patients to receive 1,000 mg, 500 mg, or a very low 200 mg dose and followed them for about three years. Disease activity scores were comparable among the groups and so were other signs that the treatment was working well: The use of steroid medication was low and treatment persistence was high. (Only seven people switched treatment over the course of the study.)

The lead author Nathan den Broeder, MSc, said the study results have changed how his rheumatology clinic is treating rituximab patients, Healio Rheumatology reported. They start patients on a 1,000 mg dose and if they do well, taper them to 500 mg for six months, then further taper them to 200 mg if they continue to do well. “With this, we hope that patients have less side effects, and we hope to reduce the cost of treatment. Also, what we instantly gain is that the infusion time for patients is also reduced.”

Rituximab, of course, has gained a lot of notoriety this year for being linked with worse COVID-19 outcomes and poor response to the COVID-19 vaccine.

More research is needed to see whether reducing the dose of rituximab could have a positive impact there. Lower doses could possiblylead to less depletion of B cells or faster regeneration of B cells. B cells are parts of the immune system that can play a role in RA inflammation, but they’re also necessary for producing antibodies (such as against COVID-19).

4. The heart disease prevention benefits of taking statins outweighs the diabetes risk for people with RA

Underlying inflammation in rheumatoid arthritis increases the risk of heart disease, which in turn may also play a role in susceptibility to type 2 diabetes. Statins, which lower cholesterol and have anti-inflammatory properties, are staples of heart disease prevention treatment, but they can also slightly raise the risk of type 2 diabetes by raising blood sugar levels. So it’s important to understand these tradeoffs when deciding to start a statin: Do the benefits of someone with RA taking it to reduce their risk of heart disease outweigh the risk of developing diabetes?

Research led by Gulsen Ozen, MD, from the University of Nebraska explored this question by looking at data on 1,768 RA patients who started statins and comparing them with 3,528 similar patients who did not start statins. They did a separate analysis for the development of diabetes on 3,608 RA patients who started statins and 7,208 RA patients who did not.

They found that statin use was associated with a 32 percent reduced rate of cardiovascular disease, a 33 percent increase in the rate of type 2 diabetes, and a 54 percent reduced rate of overall death. The researchers concluded that the important reductions in heart disease and death outweighed the modest increase in type 2 diabetes risk.

“We know that RA patients are at higher risk for the development of CVD and death and type 2 diabetes compared to the general population. Moreover, RA patients are less frequently treated with statins than the general population, which is also concerning,” Dr. Ozen said in a press release. “We found that statins reduce both CVD and all-cause mortality, which were similar in magnitude. This may suggest that statins may have other beneficial effects in RA patients beyond lipid reduction. As rheumatologists, besides optimal disease activity control, we need to work on addressing the traditional CVD risk factors in our patients in conjunction with their primary care providers. We believe that our findings emphasize the benefits of statins in patients with RA.”

5. RA disease activity and function affect outcomes in people with RA-associated interstitial lung disease

Interstitial lung disease is a serious RA comorbidity with poor outcomes for patients. It tends to affect older patients who have been living with the disease a long time and doesn’t have many good treatment options. Thus, preventing ILD in the first place and figuring out how to help patients when they’re first diagnosed is very important.

A team of researchers looked at a group of 227 RA patients with ILD from a registry of U.S. veterans. The population was older (average age 69) predominantly male (93 percent), with a smoking history (85 percent). They found that RA disease activity and functional status were independent predictors of death: Higher disease activity scores or worse functional status scores were associated with a higher risk of dying over the study period, regardless of someone’s lung function score. However, having high disease activity and poor lung function was unsurprisingly the worst combination, with a 4.5-fold higher risk of death compared to those with normal lung function and low disease activity.

The researchers say these results demonstrate the need to make sure that optimal treatment for ILD includes controlling RA disease activity while addressing the lung disease manifestations.

Irish rheumatologist Richard Conway, MB, PhD, agreed with this takeaway on a RheumNow panel, saying that “when we have patients with rheumatoid arthritis interstitial lung disease, the first thing you need to do is control the rheumatoid disease.”

6. Who is likely to get nausea or hair loss while taking methotrexate for RA?

As a first-line treatment for rheumatoid arthritis, methotrexate is a widely prescribed disease-modifying drug that is well-studied and has been used for decades to treat other conditions. But many patients struggle with side effects like nausea and fatigue and worry about potential hair loss. It would help to know if certain characteristics were associated with an increased risk for experiencing such side effects, and UK researchers set out to do just that in new research on 1,069 patients with RA who were surveyed when they first started taking methotrexate and then followed for a year.

Researchers found that one-third (31 percent) of people reported nausea and 8 percent of people reported hair loss. Women were more than twice as likely as men to report nausea and almost four times more likely to report hair loss. Older age was associated with less nausea. Consuming alcohol while using methotrexate was associated with more nausea and hair loss. Higher disease activity at the start of the study was associated with increased odds of nausea too.

Researchers plan to continue studying whether other factors may be associated with reducing methotrexate side effects, such as folic acid supplements or taking an injectable form rather than oral pills.

Research like this is helpful because it validates patients’ experiences and can make you more informed when you talk to your doctor about your concerns when starting a medication.

7. There’s more proof that using steroids for RA is linked with serious heart disease risks

While steroids have always carried a long list of side effects, more research is emerging on just how risky they can be when it comes to serious heart events — even when they’re used for relatively short periods of time or in low doses. One study from researchers from the University of Pennsylvania and the University of Alabama found that for older adults (Medicare patients) on stable disease-modifying (DMARD) therapy, long-term use of low-dose corticosteroids was linked with an increased risk for heart attack or stroke, and the risk increased with steroid dose size.

A separate study looked at data on 26,239 U.S. veterans with RA, taking into account their cardiovascular risk factors, whether they were prescribed glucocorticoids, and for how long. Researchers found that just 30 days of using glucocorticoids was associated with a 14 percent increased risk of having a major cardiac event over the next six months — independent of their baseline risk factors for heart disease, previous steroid use, or other indicators of RA disease activity, such as biologic use.

Despite reducing inflammation, steroids increase the risk for cardiovascular-related events because they can increase blood pressure and blood sugar, among other things. While the oft-recommended advice is for people to take the lowest doses of steroids for the shortest time possible, it’s important to acknowledge that 1) this can still come with risks, and 2) this isn’t always possible for patients who rely on steroids to help them cope with flares or who’ve become accustomed to taking them as part of their treatment strategy.

8. Active rheumatoid arthritis is linked with an increased risk of dementia over time

Mayo Clinic researchers set out to study which factors may be associated with an increased risk of dementia in people with rheumatoid arthritis over time, following a cohort of people who were diagnosed with RA between 1980 and 2014. (People were followed until they died, moved, or until the study was concluded at the end of 2019.) Out of 1,366 patients in the study, 107 developed dementia (8 percent).

Though age itself was a risk factor, the researchers also found that joint swelling — a sign of clinically active arthritis — was linked with an elevated risk of developing dementia. So were a number of comorbidities: diabetes, heart disease and stroke, and heart failure.

Research like this further emphasizes how important it is to treat inflammation in RA not just to protect against permanent joint damage and disability, but also because it plays a role in serious long-term chronic diseases.

9. Experts are learning more about immune system proteins and antibodies associated with cardiovascular disease in RA

It’s widely known that inflammation in RA is linked with an increased risk of heart disease, but how can we get more precision about which RA patients might be at increased risk beyond looking at measures of traditional risk factors like cholesterol and blood pressure, which most certainly don’t tell the whole story?

Two studies from research teams led by Tate Johnson, MD, of the University of Nebraska Medical Center, provide some interesting clues. In one, the researchers studied a group of 2,712 U.S. veterans with RA over time, looking to see whether there was a link between blood levels of inflammatory proteins and their risk for a serious cardiovascular event like a heart attack or stroke.

They found several that were associated with the risk of heart events, even after the researchers accounted for traditional risk factors and RA disease activity. Even people who were in low disease activity or remission at the start of the study who had higher levels of these chemicals were at an increased risk.

In the other study, the research team looked at U.S. veterans with RA for the presence of autoantibodies, and found that higher concentrations of several different autoantibodies were linked with a serious heart-related event or death, which they say supports the hypothesis that autoantibodies may directly contribute to excess heart disease risk in RA.

The future of cardiovascular disease prevention in RA could involve screening patients for the presence of inflammatory proteins and autoantibodies in order to identify high-risk patients and intervene sooner.

10. Heart disease risk is high in many people with rheumatoid arthritis even right after diagnosis

When you were first diagnosed with RA, did you and your rheumatologist or primary care doctor talk about its impact on your heart health? Dutch research at ACR shows this may be a very important conversation to have. The researchers screened every newly diagnosed RA patient for heart disease risk, using a standard heart disease risk calculator (and applying a 1.5 multiplier to account for RA as a factor, which is a crude way to account for the increased risk that RA confers).

Out of 53 people screened so far in the study, 43 percent of new patients had an intermediate or high 10-year heart disease morbidity risk and 76 percent had an intermediate or high 10-year mortality risk. Importantly, many of the patients had underdiagnosed and undertreated heart disease risk factors, such as high cholesterol and high blood pressure — which are very treatable with lifestyle changes and medication.

If you haven’t talked to a provider about your heart health lately (or ever), now’s the time.

11. The reasons RA patients don’t change therapies stay remarkably steady over time

Changing RA medication is not a decision many people make lightly — there are many concerns and fears to consider, from worries about new side effects to whether the new drug will work better or worse than the old one. But as more RA medication options become available, patients will have to contend with such choices and so it’s important for doctors and patients to be aware of the factors that go into this thinking so they can work together as a team to figure out what’s right for a given person in a given situation.

A study at ACR investigated patients’ reasons for being unwilling to change medications by repeating the questionnaire from a pivotal study that was conducted 15 years earlier. The original study from 2006 had more than 6,000 respondents and the 2021 study had more than 1,600 respondents — but interestingly, there were 442 people who took the survey both years, so researchers could compare their answers. They found that while overall, fewer people were unwilling to change therapy in 2021 than in 2016, the reasons remained consistent. They included: satisfactory control over RA, risk of side effects, fearing loss of disease control, the doctor thinking their current treatment was best, and lower levels of pain. Costs and insurance company hassles were less of a barrier to switching in 2021 than in 2006.

What’s particularly important about research like this is that it helps providers better understand where patients are coming from. Each patient may have a unique mix of concerns and/or needs to address before they are comfortable starting or changing a medication.

You Can Participate in Rheumatoid Arthritis Research Too

If you are diagnosed with rheumatoid arthritis or another musculoskeletal condition, we encourage you to participate in future studies by joining CreakyJoints’ patient research registry, ArthritisPower. ArthritisPower is the first-ever patient-led, patient-centered research registry for joint, bone, and inflammatory skin conditions. Learn more and sign up here.

You can participate in research studies about arthritis by using our ArthritisPower app to join our patient-centered research registry.

At the American College of Rheumatology/Association of Rheumatology Health Professionals Annual Meeting this year — ACR Convergence 2021 — more than 16,500 attendees and 600 speakers from more than 100 countries gathered virtually to share the latest research and address the most pressing issues for people living with rheumatic disease.

The CreakyJoints team soaked it all in — listening, watching, and learning so we could bring you the most relevant information to ensure you know what you need to better manage your condition and get better care.

We combed through hundreds of studies, attended sessions from top gout experts, and asked our team of patient and physician advisors to share the gout updates they deemed most important for patients.

The result: Our curated, patient-friendly guide to gout research and trends from ACR 2021. For more research breakthroughs from ACR 2021, check out our main guide: 100+ Arthritis & Rheumatic Disease Updates You Need to Know.

1. When dosed appropriately, allopurinol is not inferior to febuxostat in the treatment of gout

Allopurinol (Aloprim, Lopurim, Zyloprim, and generics) is often recommended over febuxostat (Uloric) for gout patients when starting uric acid-lowering therapy — but is one better than the other in the management of gout?

A team of researchers from University of Nebraska Medical Center and Boston University School of Medicine, among others, set out to find the answer in a 72-week trial (now referred to as the “stop gout” study) done in the veteran’s hospital and funded by the Veterans Association (VA). It included 950 patients who were randomly given allopurinol or febuxostat to lower serum urate levels.

The results: Allopurinol was not inferior to febuxostat and produced similar flare rates — for both patients with and without significant chronic kidney disease (CKD). Overall, 80 percent of patients achieved target uric acid levels (below 6.0 mg/dL) and nearly 90 percent achieved levels below 6.8 mg/dL, with no difference according to uric-lowering treatment. There was also no difference in patients with CKD.

“This trial demonstrates that titrating urate-lowering therapies to serum urate targets can reduce important clinical outcomes of gout flares, and that allopurinol, when titrated to doses greater than 300 mg, works about as well as febuxostat, which is a more expensive medication,” Boston University rheumatologist Jean Liew, MD, told CreakyJoints.

“That’s an important finding since allopurinol is 19 times cheaper than febuxostat, at least at the VA, and because of the black box warning [due an increased risk of cardiovascular and all-cause mortality compared with allopurinol],” the study’s lead author James O’Dell, MD, said in a RheumNow video.

Talk to your health care provider about which urat- lowering therapy is best for you.

2. Pegloticase plus immunomodulatory drugs is safe and effective for severe gout

While pegloticase (Krystexxa) has been found effective for treatment-resistant gout, it is also highly immunogenic (or capable of producing an immune response even at low doses), which can prevent it from working in some patients. Because of this issue, researchers have been studying whether giving the medication along with immunomodulatory drugs could make pegloticase more effective.

Researchers enrolled 20 patients with uncontrolled gout who received concomitant immunomodulatory drugs, including methotrexate and azathioprine. In addition to substantial decreases in uric acid levels, patients who completed 24 weeks of treatment had reductions in pain and disability.

“Gout is a chronic, systemic, and progressive disease that needs to be treated early and aggressively,” Brian LaMoreaux, MD, MS, Medical Director of Medical Affairs at Horizon Therapeutics, which manufactures pegloticase, told Healio Rheumatology. “This new analysis of real-world experience of pegloticase from the ACR RISE database adds to the body of data supporting the effective and safe use of concomitant immunomodulation for this subset of patients and suggests using concomitant immunomodulation co-therapy improves pegloticase persistence. These findings are consistent with previous clinical trials and in-practice analyses.”

3. Treat-to-target may reduce cardiovascular disease risk in gout patients on urate-lowering drugs

Hyperuricemia, or high uric acid, is a risk factor for increased cardiovascular comorbidity and mortality — and many experts believe that treating high uric acid levels with a urate-lowering drug may reverse or reduce the risk in patients with gout. However, the cardiovascular safety of uric acid-lowering medicine has also been questioned, so it’s important to understand the trade-offs of using higher doses of medicine to reduce heart disease risk.

Researchers from Brigham and Women’s Hospital set out to determine how different treat-to-target strategies, including more tight control and routine regular monitoring, could improve gout and reduce the risk of cardiovascular disease.

Using Medicare claims data, they identified more than 4,400 gout patients who took either the uric acid-lowering medications allopurinol or febuxostat. Researchers emulated a hypothetical target trial that compared the risk of major adverse cardiovascular events (myocardial infarction, stroke, or cardiovascular mortality) of gout patients receiving several different treat-to-target strategies. TTT strategies included: continuation of urate lowering therapy, regular serum acid (SUM) monitoring, and timely modification of ULT if uric acid levels exceeded target (above 6.0 mg/d).

They found a decreased rate of cardiovascular events in patients who followed any treat-to-target strategy compared to those who started urate-lowering therapy but didn’t follow a treat-to-target strategy. However, when researchers looked at different ways of treating to target, they didn’t observe differences in risk reduction among them.

The findings: “One thing we can say for sure is that it doesn’t look like the tight control or treat-to-target strategy is worsening the risk of cardiovascular disease,” study author Seoyoung Kim, MD, of Brigham and Women’s Hospital, said in a RheumNow video.

That said, Dr. Kim noted that they don’t want to overinterpret the data, as good treatment behavior patterns (taking meds as prescribed, following up with your doctor, getting regular blood tests) could also contribute to decreased risk of cardiovascular disease.

4. Omega-3 fatty acids do not lower uric acid levels but research is ongoing when it comes to gout flares

Omega-3 fatty acids are believed to be beneficial for people with gout (as well as for other inflammatory conditions) because they inhibit substances that cause inflammation in the body. But do omega-3 supplements have a direct impact on preventing gout flares or reducing levels of uric acid? (When high levels of uric acid, which is normally a waste product, accumulate in the blood, it can crystallize in the joints, leading to painful gout attacks.)

In a small pilot study, researchers set out to examine the effects of omega-3 supplementation with fish oil on serum urate (SU) and weight and body mass index (BMI) in people with gout. The goal was to determine whether it could help prevent flares in people starting urate-lowering therapy. They found no statistically significant difference in SU, weight, or BMI, however there was a correlation between supplementation and the total number of flares between week 12 and 24 of the trial.

“They did not see a beneficial effect on flares or serum urate, though biologically I don’t think we would have expected an effect on serum urate, so I think some questions remain: Are we using the right dose of fatty acids to truly get the inflammatory effect,”  rheumatologist and epidemiologist Tuhina Neogi, MD, said in a RheumNow video. “I’m hoping that the book is not closed yet on omega-3 fatty acids.”

5. You should be working with your doctor to treat gout as a chronic disease, not just for symptom management

The benefits of urate-lowering therapies for symptoms like flares and tophi are well-studied, but more research is needed on how adequate gout treatment impacts long-term health outcomes.

In a large VA study of gout patients, researchers looked at the effects of urate-lowering therapies on all-cause mortality (death for any reason). They found that the use of urate-lowering therapy was associated with reduced mortality — and if patients reached a target under 6 mg/dL, there was an even greater association with reduced mortality.

“Sub-optimally treated gout was associated with a higher risk of death compared to well-treated gout,” Boston University rheumatologist Jean Liew, MD, told CreakyJoints. Researchers defined “well-treated” gout by prescription fills of urate-lowering therapies and measures of uric acid using VHA pharmacy and laboratory data.

“The study emphasizes the importance of treating gout as a chronic disease with urate-lowering therapies, such as allopurinol or febuxostat, rather than treating for symptoms/gout flares only,” says Dr. Liew.

6. Breakthrough COVID infections are common among vaccinated patients with gout

Unfortunately, vaccinated patients with certain rheumatic diseases have been found to have increased odds of breakthrough COVID infections – and this includes patients with gout.

An analysis from a U.S. nationally sampled electronic medical record data repository, compared 47,303 rheumatic disease patients to 536,954 controls. Researchers discovered that breakthrough infections varied by rheumatic disease, with rheumatoid arthritis, spondyloarthritis, and gout topping the list.

While uric acid-lowering medications don’t suppress the immune system, gout patients may be more vulnerable to COVID-19 breakthrough infection because of other factors, like age or certain comorbidities, such as diabetes. Some patients may also be taking corticosteroids like prednisone to manage gout flares, which have been associated with increased risk for COVID-19.

The takeaway: If you have gout, continue to practice COVID safety measures and make sure to get a COVID-19 vaccine booster. Read more here about COVID-19 vaccine updates in rheumatic disease patients.

7. Uric acid can accumulate in the spine, causing back pain

While gout typically affects the big toe, it can cause pain, swelling, and inflammation in other joints, too. But what about your spine?

Researchers set out to determine whether gout could affect the lumbrosacral spine in patients with and without tophaceous gout by doing CT scans to check for the presence of uric acid. They enrolled 50 gout patients (some who had tophi and some did not) and 25 controls who did not have gout.

“Roughly 50 percent of the gout patients seemed to have evidence of urate deposition in the spine,” study coauthor and NYU rheumatologist Michael Pillinger, MD, said in a RheumNow video. “One patient had severe back pain and bad gout and the back pain went away when we treated the gout.”

Experts hope these findings remind physicians (and patients) that “urate is an equal opportunity depositor — and it’s probably in more places than we think it is,” said Dr. Pillinger.

The takeaway: If you have gout, don’t blow off back pain. Talk to your health care provider to determine if uric acid could be the culprit.

You Can Participate in Gout Research Too

If you are diagnosed with gout or another musculoskeletal condition, we encourage you to participate in future studies by joining CreakyJoints’ patient research registry, ArthritisPower. ArthritisPower is the first-ever patient-led, patient-centered research registry for joint, bone, and inflammatory skin conditions. Learn more and sign up here.

You can participate in research studies about arthritis by using our ArthritisPower app to join our patient-centered research registry.

At the American College of Rheumatology/Association of Rheumatology Health Professionals Annual Meeting this year — ACR Convergence 2021 — more than 16,500 attendees and 600 speakers from more than 100 countries gathered virtually to share the latest research and address the most pressing issues for people living with rheumatic disease.

The CreakyJoints team soaked it all in — listening, watching, and learning so we could bring you the most relevant information to ensure you know what you need to better manage your condition and get better care.

We combed through hundreds of studies, attended sessions from top psoriatic arthritis experts, and asked our team of patient and physician advisors to share the psoriatic arthritis updates they deemed most important for patients.

The result: Our curated, patient-friendly guide to psoriatic arthritis research and trends from ACR 2021. For more research breakthroughs from ACR 2021, check out our main guide: 100+ Arthritis & Rheumatic Disease Updates You Need to Know.

1. A new type of oral therapy (TYK2 inhibitors) is emerging for psoriatic arthritis

As more types of biologic therapies (which need to be given as injections or infusions) emerge for psoriatic arthritis, so too are new types of targeted medications that are taken as oral pills. At ACR this year, there was promising data on a couple of different therapies in a new class of drugs known as TYK2 inhibitors.

One therapy, deucravacitinib, has already been studied and shown to work well in psoriasis. At ACR, researchers led by Philip Mease, MD, presented data from a phase 2 clinical trial where different groups of PsA patients were randomized to take one of two deucravacitinib doses or a placebo for four months. Those on therapy were much more likely to achieve a 20 percent improvement in symptoms (ACR20) than those on placebo and no serious adverse events were reported.

There was also new data on another medication, brepocitinib, which is a combination of a TYK2 and JAK1 inhibitor. The results from this phase 2 trial, also led by Dr. Mease, showed that higher doses of the medication were associated with improvement relative to placebo, particularly when it came to minimal disease activity. About 35 percent of people on brepocitinib achieved minimal disease activity after 16 weeks compared to 3 percent on placebo.

Both medications are still being studied and not yet approved for treating psoriatic disease. More information will be needed on long-term safety, particularly because of similarities in how they work with JAK inhibitors, which are currently under review at the FDA for concerns and cardiac events and cancer risk.

2. Treating psoriatic arthritis with IL-23 inhibitors looks promising

Among the growing number of treatment options for psoriatic arthritis in recent years is a group of medications that target the immune system protein interleukin-23 (IL-23). A number of different studies presented at ACR this year provide more evidence for the effectiveness of these therapies.

One study on the IL-23 blocker guselkumab (Tremfya), which was FDA-approved last year for PsA, continued to follow clinical trial patients over two years. Researchers found what they call “durable” responses, meaning that the effectiveness of treatment lasted over time.

• About 75 percent of people achieved what’s known as an ACR20 response, or a 20 percent improvement in symptoms after two years, regardless of whether they took the medication every four weeks or every eight weeks.
• About 55 percent of people achieved an ACR50 response, or a 50 percent improvement in symptoms after two years, regardless of whether they took the medication every four weeks or every eight weeks.
• About 35 percent of people achieved an ACR70 response, or a 70 percent improvement in symptoms after two years, regardless of whether they took the medication every four weeks or every eight weeks.

Risankizumab (Skyrizi) is another IL-23 blocker — approved for psoriasis but still being studied for psoriatic arthritis — that showed promising data from two phase 3 clinical trials at ACR. In the studies, about 1,400 PsA patients who already failed a DMARD or a biologic were randomized to get risankizumab or a placebo. After six months, significantly more people on the medication achieved an ACR20 response than on placebo (55 percent vs. 31 percent) as well as a minimal disease activity (25 percent vs. 11 percent). (Minimal disease activity is a different way of measuring how well someone with PsA is doing — more on this below.)

One benefit of IL-23 inhibitors relative to other therapies is their dosing schedule. After initial loading doses, risankizumab is given every three months; guselkemab every two months.

But while “IL-23 inhibitors clearly work,” as rheumatologist Eric Rudermman, MD, said in a RheumNow video, “the challenge is understanding where these drugs fit into our algorithm for treating psoriatic arthritis.” Studies that compare these drugs directly with other treatments are needed, he said “to decide if they are as good as or potentially better than some of the other drugs we already have.” IL-23 inhibitors are known to be effective for skin disease, which is why dermatologists love them, said Dr. Ruderman. More time and research is needed to see how they’ll be used for psoriatic arthritis.

3. Hospitalizations for infections are decreasing among people with psoriatic arthritis

Biologic drugs — which have become commonly used to treat psoriatic arthritis over the last decade — are associated with an increased risk of infection, so a team of researchers from Boston University wanted to look at recent trends in serious infections in PsA. When they looked at 7 million hospital discharge records from 2012-1017, they found that there was a significant decrease in PsA patients who were hospitalized for sepsis (blood infection), skin and soft tissue infections, and urinary tract infections. There was no significant change in hospitalizations for pneumonia.

Noting that the findings were contrary to the research team’s initial hypothesis that infections would increase over the time period, study lead author Vagishwari Murugesan, MD, said that more research is needed to understand why. However, she said during a press conference at ACR that “we believe that better disease control and better control of inflammation can lead to decreased risk of infection in this subset of patients,” Healio Rheumatology reported.

4. Do doctors and patients care about the same issues when it comes to treating PsA? Mostly.

When it comes to treating PsA, how much do rheumatologists and patients prioritize the same issues? A study ledy by Phillip Mease, MD, looked at this by running focus groups with 53 PsA patients and by conducting interviews with 13 PsA expert doctors.

Researchers found that patients and doctors aligned on their main concerns: treating joint pain and swelling, fatigue, and disease activity. But while doctors ranked clinical symptoms such as enthesitis, dactylitis, and skin disease more highly, patients considered items such as access to care, future health uncertainty, and sleep quality to be more important than doctors did.

While it’s not surprising that doctor and patients prioritize different aspects of caring for a complex disease like PsA, it’s important for everyone to be aware of where these differences play out, so doctors can make sure they’re treating the whole patient, and patients can make sure they share their most important concerns with their doctor.

“This poster highlights the need to consider an approach to patient care in a holistic manner,” rheumatologist Swetha Ann Alexander, MD, said on RheumNow. “Some ways this can be addressed are better ancillary support such as social work to improve access to care, psychiatry, or sleep counseling to address insomnia and other comorbid psychiatric illnesses. Finally, empowering patients by disease education decreases future health uncertainty.”

5. Psoriatic arthritis patients should pay attention to eye pain and redness

Uveitis, a type of eye inflammation, is common in many rheumatic and inflammatory diseases, but it’s not something many patients know to look out for.

A team of Israeli researchers looked at 6,147 PsA patients diagnosed between 2005 and 2020 to see how common uveitis was compared to a group of 23,999 healthy controls. Uveitis was more than twice as common in PsA patients as it was in controls. Compared to controls, PsA patients with uveitis were more often younger and female. Among those with PsA, people diagnosed with uveitis were much more likely to have had a previous episode of uveitis.

They were also more often taking conventional synthetic DMARDs (such as methotrexate) or TNF blocker biologics. Among people taking other biologics (such as IL-17 or IL-23 blockers), there were no differences in uveitis occurrence.

A “high index of suspicion” is warranted in people with PsA who have uveitis symptoms and have already had the condition previously, according to the researchers. Symptoms include eye redness, pain, decreased or blurry vision, and light sensitivity.

 6. The microbiome may yield important clues about psoriatic disease — and who get it

Psoriatic disease, which includes psoriasis and psoriatic arthritis, is thought to be due to a combination of genetic and environmental factors — but how much of a role does either play? A team of researchers studied this in nine pairs of identical twins, where one twin had psoriatic disease and the other did not.

They specifically looked at gut and skin bacteria — known as the microbiome — collected from stool and skin samples (Samples were taken from healthy skin — not from areas with psoriasis plaques.) What they found: One bacteria strain (Ruminococcus bromii) was significantly less common in the twins with psoriatic disease compared to their unaffected siblings, which is a clue that it may be associated with disease.

Among skin samples, particularly in the scalp, researchers observed key differences in the bacterial makeup — notably, less diversity in the types of microbes in the twins with psoriatic disease.

More research is needed to understand how research like this can inform diagnosis and treatment. For one thing, experts don’t know whether this is cause or effect, or both: Does having psoriatic disease change your microbiome, or do changes in your microbiome trigger the onset of disease?

7. Peripheral spondyloarthritis is unique from psoriatic arthritis and axial spondyloarthritis

Spondyloarthritis is an umbrella term for a few different types of arthritis that have certain traits in common. It includes psoriatic arthritis and axial spondyloarthritis, but less is known about another form: peripheral spondyloarthritis. This condition shares symptoms with both PsA and axSpA, but as a new study shows, peripheral spondyloarthritis (pSpA) is separate and unique. And it needs to be better understood in order to improve diagnosis and treatment.

The researchers looked at 4,185 patients diagnosed by their rheumatologist as having pure pSpA or pSpA combined with PsA or axSpA. People with pure pSpA had a high prevalence of disease in their peripheral joints, synovitis (swelling around the joints), enthesitis, and being positive for the HLA-B27 genetic marker.

What’s more, they had a significantly higher disease burden and lower use of biologic drugs than people with PsA or axSpA, which indicates their disease is not being well-managed.

Why do these distinctions matter? Because as experts learn more about which treatments can help certain SpA symptoms, the hope is that doctors will be able to tailor treatments to a patient’s unique needs.

8. Asking about back pain may help dermatologists identify early psoriatic arthritis

Knowing that many people with psoriatic arthritis have spinal (“axia”) involvement, German researchers developed a back pain screening tool for dermatologists to see if they could identify psoriasis patients who have early PsA with spinal symptoms.

Dermatologists referred psoriasis patients who met the following criteria for a rheumatology evaluation: under age 45, back pain for three or more months, and who had not taken biologic or targeted DMARDs in the 12 weeks prior to the screening. Out of 355 dermatology patients, 151 (42 percent) qualified to be referred to a rheumatologist; 14 people were ultimately diagnosed with PsA with axial symptoms.

“These are folks who may not volunteer that they’ve been having back pain when they’re getting a skin check with their psoriasis doctor,” said rheumatologist Pedro Castillo, MD, in a RheumNow video, noting that the simplicity of the screening questions makes it easier for other specialists to implement.

9. Experts are looking at lots of ways to predict which psoriasis patients will develop psoriatic arthritis — and when

This continues to be a very exciting area of research, and two studies at ACR addressed this issue from very different approaches. Cleveland Clinic researchers looked at a group of 384 people who were diagnosed with psoriasis and then psoriatic arthritis. When they evaluated a slew of risk factors to see which ones influenced how quickly people were diagnosed with PsA after psoriasis, they found one that stood out: age at psoriasis diagnosis.

People diagnosed with psoriasis at an older age develop psoriatic arthritis much sooner than people diagnosed with psoriasis at a younger age. For example, people diagnosed with psoriasis around age 40 progress to psoriatic arthritis about 12 years faster than those diagnosed with psoriasis around age 18.

This means if you’re diagnosed with psoriasis at an older age, you should pay more attention to symptoms of psoriatic arthritis (like joint pain and swelling, foot pain, and swollen digits) and bring them up to your doctor.

Meanwhile, a separate study from Canadian researchers looked at what’s known as epigenetic differences, or small changes that can affect how your DNA works in your body, between people who have psoriasis only versus those who went on to develop psoriatic arthritis.

They found a number of differences in certain markers that can distinguish between psoriasis patients that will develop PsA from those that will not. More research is needed to understand how information like this might be used to actually prevent the development of psoriatic arthritis.

10. More research questions the necessity of methotrexate for psoriatic arthritis

The disease-modifying antirheumatic drug methotrexate is a first-line therapy for rheumatoid arthritis, and it is commonly used for PsA as well. But just as research presented at ACR (from our ArthritisPower research registry) shows that many PsA patients would prefer a treatment plan that doesn’t include methotrexate, a German study shows that methotrexate might not be necessary when a patient is doing well on a biologic.

In the study, researchers conducted a randomized controlled trial with the biologic ustekinumab (Stelara) and methotrexate. There were four groups of patients taking ustekinumab. Two were also on methotrexate and either continued it or started a placebo instead of MTX. The other two had not yet started MTX and were given it or a placebo along with ustekinumab.

Researchers found that neither staring nor continuing methotrexate had a significant impact on such measures as arthritis, enthesitis, dactylitis, skin, quality of life measures, or functional measures. The researchers concluded that based on this data, there’s no evidence to add or maintain ongoing methotrexate when starting this ustekinumab. More research will be needed to see if these findings apply to other biologics.

“Methotrexate isn’t going anywhere,” said Pedro Castillo, MD, on RheumNow.com, writing about this research. “We will continue to use it in the treatment of rheumatic disease seemingly indefinitely, but it is important to take note of patient preferences and to consider discontinuing it if a biologic is getting the job done.”

 11. Who gets to ‘minimal disease activity’ in psoriatic arthritis?

When there’s no cure for a disease like PsA, we need other ways to measure how well people are doing on a given treatment. Minimal disease activity (MDA) is a measure that is becoming more widely used for psoriatic arthritis specifically. It takes into account a number of factors, including joint pain and swelling, enthesitis, skin clearance, patient assessments of pain, disease activity, and daily function.

A study of 1,251 psoriatic arthritis patients, led by rheumatologist Alexis Ogdie, MD, found that minimal disease activity was achieved by just 22.5 percent of patients who after six months of starting either biologics or targeted oral DMARDs.

Were there any differences between those who reached minimal disease activity and those who didn’t? Researchers found a few: Those in minimal disease activity tended to be younger and have a shorter duration of PsA. They were also less likely to be female, obese, or have a history of depression. More people who got to minimal disease activity were considered “biologic naive” — meaning they hadn’t taken a biologic before the study. They were also more likely to keep taking the therapy throughout the study.

While it may be disconcerting that such a low number of people (less than a quarter) achieved minimal disease activity, research like this helps doctors and patients identify ways to help patients do better on therapies. For instance, this study supports the importance of treating patients early in the course of the disease. It also highlights the need to address and treat other factors that may affect patients’ outcomes, such as depression.

You Can Participate in Psoriatic Arthritis Research Too

If you are diagnosed with psoriatic arthritis or another musculoskeletal condition, we encourage you to participate in future studies by joining CreakyJoints’ patient research registry, ArthritisPower. ArthritisPower is the first-ever patient-led, patient-centered research registry for joint, bone, and inflammatory skin conditions. Learn more and sign up here.

You can participate in research studies about arthritis by using our ArthritisPower app to join our patient-centered research registry.

At the American College of Rheumatology/Association of Rheumatology Health Professionals Annual Meeting this year — ACR Convergence 2021 — more than 16,500 attendees and 600 speakers from more than 100 countries gathered virtually to share the latest research and address the most pressing issues for people living with rheumatic disease.

The CreakyJoints team soaked it all in — listening, watching, and learning so we could bring you the most relevant information to ensure you know what you need to better manage your condition and get better care.

We combed through hundreds of studies, attended sessions from top lupus experts, and asked our team of patient and physician advisors to share the lupus updates they deemed most important for patients.

The result: Our curated, patient-friendly guide to lupus research and trends from ACR 2021. For more research breakthroughs from ACR 2021, check out our main guide: 100+ Arthritis & Rheumatic Disease Updates You Need to Know.

1. ​​Childhood trauma may magnify the risk of frequent lupus flares

A critically important area of research is how experiencing trauma can affect your risk for and outcomes with autoimmune and inflammatory diseases like lupus. A new study from University of California, San Francisco researchers shed more light on this. Researchers analyzed data on 251 patients who completed a survey about trauma during adulthood and childhood and found a high prevalence: 77 percent reported any trauma, 64 percent reported trauma that they perceived as dangerous to them, and 23 percent experienced trauma that caused an injury.

They found people who experienced trauma during adulthood may be at increased risk for more frequent self-reported flares over time, and the experience of childhood trauma may magnify that risk. The more childhood traumas people reported, the greater the odds of serious flares.

This study furthers the importance of mental health providers and rheumatologists working together on disease management.

2. Lower doses of hydroxychloroquine result in higher risk of lupus flares but lower risk of retinopathy

Hydroxychloroquine is an important medication for patients with lupus, with benefits that include fewer flares, less kidney damage, improved metabolic effects, and even survival. Yet the optimal dose to achieve these effects has yet to be determined, especially since high doses have been found to increase the risk of long-term eye damage, or retinopathy.

In a study presented at ACR, researchers from Massachusetts General Hospital and Brigham and Women’s Hospital set out to answer the question: Would there be a higher risk of lupus flares if we used a lower dose of this medication to try to minimize toxicity?

To determine the answer, they split patients into a low dose group (between 300 mg to less than 400 mg) and lowest dose group (between 200 mg to less than 300 mg). “We found that really any dose less than 400 mg was associated with a higher risk of flares,” lead author and rheumatologist April Jorge, MD, said in a RheumNow video.

So what does this mean for you? “I’m not sure that there is an across-the-board, safe and effective dose. It’s going to come down to individual patient decision-making and balancing the risks and benefits,” said Dr. Jorge.

3. Lupus nephritis disparities are affected by your race and where you live

 Lupus nephritis, or lupus that affects kidney function, is a more serious form of the disease. While deaths from lupus nephritis have thankfully dramatically decreased overall over the last 20 years, a study from researchers at University of California Los Angeles shows that these improvements have not been shared equally among different racial and ethnic groups.

They found that deaths from lupus nephritis decreased by 26 percent over the last 20 years, but LN deaths among Black patients were six times greater than that of white patients and more than two times greater than that of other race/ethnic groups. Black patients accounted for 38 percent of the lupus nephritis deaths, despite representing only 12.8 percent of the U.S. population. Hispanics, American Indians, Alaskans, and Asia Pacific Islanders were also found to have higher death rates than white patients.

Perhaps surprisingly, the highest mortality for lupus nephritis occurred in large metropolitan areas relative to other environments, which suggests more research is needed on how neighborhood environmental factors affect health outcomes.

“These findings need an explanation,” wrote Janet Pope, MD, in an article on RheumNow. “A deep look at unconscious biases of health care workers and health system failures is also warranted, as very few polygenic changes will account for 6 times higher discrepancies in mortality.”

Researchers also noted that “studies are urgently needed to understand reasons underlying these disparities and the recent worsening trend.”

Read more here about more important new research on health disparities in rheumatology.

4. The lupus nephritis medication voclosporin (Lupkynis) continues to effectively improve kidney function long-term

Treatment options for lupus nephritis have been limited until recently, with the FDA approval of voclosporin. In ongoing research on the long-term safety and effectiveness of the medication, researchers found that patients who received voclosporin (90 people) along with mycophenolate and low-dose steroids maintained “meaningful decreases” of protein in the urine (a sign of deteriorating kidney function) with stable estimated glomerular filtration rates (a measure of kidney function) at 2.5 years. No new adverse events were reported during this continuation study.

“These data are significant as they reinforce the clinical value and safety of Lupkynis for up to 2.5 years,” lead author Amit Saxena, MD, of the New York University School of Medicine, told Healio Rheumatology.

5. When you have a lupus nephritis patient who isn’t doing well on mycophenolate, should you next use belimumab or voclosporin?

This was the subject of the annual Great Debate session at ACR, tackled by lupus specialists Michelle A. Petri, MD, MPH, director of the Hopkins Lupus Center at Johns Hopkins University (who argued for belimumab) and Brad Rovin, MD, from the department of nephrology at the Ohio State University Wexner Medical Center (who argued for voclosporin).

Among the factors debated were efficacy, safety, and adherence. Dr. Petri noted belimumab’s strong safety profile, saying “as rheumatologists, when we pick regimens for our patients, we always have to take safety into account because many of our patients are quite vulnerable.”

Dr. Rovin, on the other hand, noted that patients treated with voclosporin require fewer steroids, which could mean “improved patient satisfaction” and “better adherence in the short term, and hopefully less damage in the long term from glucocorticoids.”

The verdict: “Ultimately, they both agreed that ideally either medication should be added early-on to therapy for lupus nephritis (either mycophenolate or cyclophosphamide) given the improved response in their phase 3 clinical trials,” Duke rheumatologist Mithu Maheswaranathan, MD, told CreakyJoints.

6. Reducing, stopping hydroxychloroquine may increase flare risk for lupus patients in remission

Most lupus patients are prescribed hydroxychloroquine as a first-line drug — but many physicians consider lowering or stopping the drug during remission or low disease activity. By doing so, they hope to limit long-term toxicity due to retinal damage or other organ damage.

In fact, nearly 75 percent of lupus patients have lowered, stopped (or both) their hydroxychloroquine at some point — and often without consulting their physician, according to Sasha Bernatsky, MD, of McGill University, in Healio Rheumatology.

But can this common practice of stopping hydroxychloroquine result in increased flares? In a study of 1,460 patients presented at ACR, researchers discovered that patients in remission who lowered or stopped hydroxychloroquine had a two-fold increase in flare risk compared to those on maintenance therapy.

“I’m going to be using these results in discussions with my patients regarding what the potential implications are of lowering or stopping hydroxychloroquine; I think in the end this information should be in their hands so that they can be the ones to make these decisions with us,” Dr. Bernatsky told Healio Rheumatology. “Of course, given the significant flare rates even in remission, we need to keep on working on optimizing lupus treatments.”

7. Cognitive impairment in lupus may be linked to structural changes in the brain

Lupus has the potential to impact almost any part of the body, including the brain and central nervous system, which can lead to what are medically known as neuropsychiatric symptoms. These include dizziness, memory problems, and even seizures and strokes.

While not everyone with lupus experiences neuropsychiatric symptoms, researchers sought to examine the link between whether people who do have such symptoms also have underlying structural changes in the brain.

They studied 78 patients with lupus and 71 healthy controls, and found cognitive dysfunction in nearly 50 percent of SLE patients. Using different types of MRI, they observed correlations between people with cognitive dysfunction and certain MRI abnormalities and differences in connectivity between different brain regions.

The findings: “SLE patients with cognitive impairment have abnormalities in brain functional connectivity,” John Hanly, MD, of Dalhousie University told Healio Rheumatology. “The same abnormalities were seen in SLE patients with extensive blood-brain barrier leakage supporting the association with cognitive impairment.”

Researchers noted that further studies were needed to determine the potential of targeting the blood-brain barrier as a therapeutic strategy in lupus patients.

8. A new, less invasive biomarker of disease activity may be on the horizon for lupus patients

An international collaboration between researchers in China and Houston looked at urinary L-selectin, a protein in the urine that may predict disease activity and histologic changes in lupus nephritis. They looked at 197 lupus patients and compared them with 33 patients with chronic kidney disease and 27 healthy volunteers.

The findings: Urine L-selectin was significantly increased in active lupus nephritis patients. Researchers say it could be a new biomarker of lupus nephritis disease activity and has potential to predict damage to kidneys.

“What a tremendous advance it would be to have a urinary marker of disease activity,” rheumatologist Arthur Kavanaugh, of UC San Diego Health, said in a RheumNow video. “A urine test is non-invasive and can also be mailed [in] in theory.”

9. All lupus patients need to be alert to potential multimorbidities, no matter age, sex, race/ethnicity.

Several large national studies presented by researchers from the Mayo Clinic at ACR revealed some interesting facts when it came to sex, age, and racial/ethnic differences in multimorbidities, defined as two or more comorbidities, among lupus patients.

Here are some of the key findings:

• Nearly 60 percent of people with lupus have “multimorbidities” compared to 26 percent of those without
• While lupus is more common in women, male patients are at a higher risk of multimorbidities, perhaps due to higher rates of delayed care, more severe disease, and less compliance with medication
• Asian patients with lupus have fewer multimorbidities than Black patients
• Black patients have more multimorbidities than white patients
• Hispanic patients have similar multimorbidities as white patients
• Younger adults with lupus had an equivalent multimorbidity burden of someone 30 years older
• Lupus patients 65 and older have more multimorbidities than those without lupus in the same age group

The takeaway: Lupus is associated with many different health complications regardless of your age, sex, or race/ethnicity. Working with your rheumatologist and primary care doctor to manage comorbidities and coordinate necessary care from specialists, such as cardiologists and nephrologists, is crucial.

10. Women with lupus aren’t getting screened for cervical cancer according to recommended guidelines

Women with lupus have an increased risk of cervical cancer, especially if taking immunosuppressive therapies, but a new study from University of Kansas researchers shows that rates of cervical cancer screening among lupus patients were not in line with recommended guidelines from the American Cancer Society.

The ACS recommends screening women with lupus at age 21 or 1 year after sexual activity, whichever comes first, with annual Pap testing for patients under age 30 and a yearly Pap with HPV co-testing if older than 30. In their study of 145 patients, researchers found the average time between cervical cancer screenings was 4.5 years, with increasing age directly correlated with a decrease in screening.

The researchers said that interventions are needed to increase cervical cancer screening frequency in lupus patients and they plan to work with the ob-gyn department to develop a collaborative approach.

Cervical cancer is highly preventable because abnormal cells can be caught early and removed with regular screening. Make sure you ask your rheumatologist and/or ob-gyn about this so you can be sure you’re up to date.

You Can Participate in Lupus Research Too

If you are diagnosed with lupus or another musculoskeletal condition, we encourage you to participate in future studies by joining CreakyJoints’ patient research registry, ArthritisPower. ArthritisPower is the first-ever patient-led, patient-centered research registry for joint, bone, and inflammatory skin conditions. Learn more and sign up here.

If you have a rheumatic or musculoskeletal disease (or are a caregiver for a loved one with these conditions) being engaged in your care means staying up to date on research about your condition. That’s where the annual meeting of the American College of Rheumatology comes in: Every fall, rheumatology health professionals from around the world gather to share best clinical practices and cutting-edge research.

Because of the COVID-19 pandemic, this year’s meeting, called ACR Convergence 2021, was held virtually, as it was last year. Still, our goal remained the same: To ensure our patient community stayed informed about the key learnings and trends from ACR, so they can advocate for better care.

This year, our task was more Herculean than ever. That’s because the weeklong meeting has become about so much more than scientific updates about disease prevention, diagnosis, and treatment. It is also beginning to tackle the contextual, environmental, and systemic issues in our health care and society — from systemic racism to climate change — that must be acknowledged in order to provide equitable, quality care.

“I think COVID-19, long COVID, and civil unrest has pushed scientists and rheumatologists in a new direction that would not have been their path otherwise,” says patient advocate Jennifer Walker, who reported on the conference for CreakyJoints, along with fellow advocates Eileen Davidson, Charis Hill, and Dawn Gibson. The seeds of something new were present at ACR, but we don’t know what the result will be just yet.”

What we do know is that it’s become increasingly clear that you can’t reduce pain, inflammation, and disease activity; treat comorbidities; and help patients improve function and quality of life without looking at the entirety of who they are as a person and how the environment in which they live, work, and receive health care affects their outcomes.

“The virtual platform proved that the accessibility long sought by the disability community is doable,” says patient advocate Dawn Gibson. “We engaged with some of the thorniest issues facing our society, the role that racial and ethno-linguistic factors play in health outcomes. Rheumatology soldiered on throughout the pandemic, and patients continued to make themselves heard, through Patient Perspectives posters, profesional panels, and social media.”

The conference’s opening session set the tone  — optimistic, but committed to major change — by featuring an interview with Seema Yasmin, MD, a medical doctor and journalist who is currently the Director of the Stanford Health Communication Initiative. Dr. Yasmin, who has committed her career to improving health literacy to stop the spread of medical misinformation, emphasized the importance of not going back to status quo “after” the COVID-19 pandemic, especially when it comes to radical shifts in medicine that increase accessibility for patients, such as telemedicine.

Dr. Yasmin concluded by saying that “the most frequently used medical procedure is communication” — and we at CreakyJoints and the Global Healthy Living Foundation couldn’t agree more.

With that in mind, here is a crash course in the main highlights from ACR Convergence 2021.

Here is a table of contents to the sections in this resource:

• Axial Spondyloarthritis
• Gout
• Lupus
• Osteoarthritis
• Psoriatic Arthritis
• Rheumatoid Arthritis
• COVID-19
• COVID-19 Vaccine
• Health Disparities
• Mental Health
• Diet & Exercise
• Fibromyalgia
• Integrative Approaches to Pain Management
• Supporting Patients at Work
• Family Planning & Pregnancy
• Pollution and Climate Change
• Patient Perspectives

Axial Spondyloarthritis (axSpA)

ACR shared plenty of data and insights on many of the unique issues faced by patients living with axSpA, including high rates of unemployment, depression, anxiety, and other comorbidities. Other research revealed important data on managing disease flares and preventing disease progression.

Perhaps not surprisingly, an area that got a lot of attention at ACR was the challenge of diagnosing axSPA — specifically, the lack of axSpA awareness among primary care physicians (83% rarely or never order a test for HLA-B27, a genetic marker associated with axSpA) and difficulty interpreting X-rays (could artificial intelligence help?).

For more details on all of this and more, check out our guide: ACR 2021: 9 New Things to Know About Axial Spondyloarthritis.

 

Gout

Researchers talked a lot about the impact of uric acid-lowering drugs — including the differences between allopurinol and febuxostat, the effectiveness of pegloticase, and treat-to-target strategies to reduce the risk of cardiovascular disease and minimize flares.

Several studies emphasized the importance of managing gout as a chronic disease — for example, by looking beyond just treating the symptoms — as well as the role of diet (specifically omega-3 fatty acids) in reducing flares.

There were also some interesting posters presented this year that addressed patient-focused concerns like the burden of flares and stigma of gout.

For more details on all of this and more, check out our guide: ACR 2021: 7 New Things to Know About Gout.

Lupus

Lupus flares – including what makes them worse and whether stopping or reducing medication in remission can increase your risk – was the theme of several studies at ACR this year.

Perhaps some of the most important lupus research involved identifying disparities in age, sex, race, and ethnicity in patient with lupus, specifically looking at patients’ risk of mortality and multimorbidities (two or more comorbidities).

And we can’t forget to mention the spotlight on lupus during the meeting’s Great Debate, which this year focused how to treat patients with lupus nephritis: Should you use belimumab or voclosporin?

For more details on all of this and more, check out our guide: ACR 2021: 10 New Things to Know About Lupus.

Osteoarthritis

 

Osteoarthritis (OA) research this year included several studies that explored different aspects of pain management for patients with OA. For example, one study examined whether improving pain via joint replacement surgery could improve mental health; another took a close look at the pain-relieving effects of cannabidiol (CBD) for hand OA.

Additional data and insights were presented about the importance of non-drug therapies, like physical therapy and stair climbing, for disease management and long-term health.

For more details on all of this and more, check out our guide: ACR 2021: 8 New Things to Know About Osteoarthritis.

Psoriatic Arthritis

 

We learned about new PsA therapies as well as disease causes and symptom management. Among the hot topics: A new type of oral therapy (TYK2 inhibitors), the benefits of IL-23 inhibitor biologis, the importance of treating patients early in the course of the disease, and spinal (“axial”) involvement in PsA.

Other exciting areas of research at ACR included new insights on predicting which psoriasis patients will develop psoriatic arthritis, including whether the microbiome can provide key clues.

There were also several patient-centered studies that examined the impact of PsA on your mental health, relationships, and work.

For more details on all of this and more, check out our guide: ACR 2021: 11 New Things to Know About Psoriatic Arthritis.

Rheumatoid Arthritis

 

Options in rheumatoid arthritis (RA) treatment, side effects of steroids and methotrexate, and preventing comorbidities, were big topics at ACR this year. One study even looked at whether the biologic abatacept has the potential to reverse early-stage RA.

Patients’ preferences were also front and center, with one study examining the unique mix of concerns and needs doctors should address with patients prior to starting or changing treatment.

For patient advocate Jennifer Walker, the emphasis on research in comorbidities — we learned a lot about lung disease, heart disease, diabetes, and dementia — stood out from this year’s conference. “When a patient has comorbidities on top of their inflammatory arthritis it exponentially complicates their care and requires their doctors to communicate with one another.”

While it was alarming to hear about the many health issues that could crop up alongside RA, it was also encouraging to learn about the research being done to help screen, prevent, and treat them.

For more details on all of this and more, check out our guide: ACR 2021: 11 New Things to Know About Rheumatoid Arthritis.

 

COVID-19

 

How does having a rheumatic disease or taking immunosuppressant medication affect your risk for contracting COVID-19 or having poor outcomes? With another year of data available, the answers are becoming more clear — and in many ways, reassuring.

This year at ACR we also saw important research about long COVID as well as more insights about how the pandemic is affecting patients’ quality of life (less exercise, worse mental health) and utilization of health care.

For more details on all of this and more, check out our guide: Fall 2021 Update: 8 Things We Now Know About COVID-19 in Rheumatic Disease Patients.

COVID-19 Vaccine 

 

Last year at ACR, the Pfizer COVID-19 vaccine was on the cusp of being authorized for emergency use—and doctors and researchers had precious little insights as to how rheumatic disease patients would fare in terms of safety, effectiveness, disease flares, and more. While many questions remain, we’re starting to better understand many of patients’ key concerns. Namely: Side effects are similar to those of the general population, the risk of disease flares is low, and certain immunosuppressive medications do decrease effectiveness, demonstrating the importance of getting a third dose

For more details on all of this and more, check out our guide: Fall 2021 Update: 7 Things We Now Know About COVID-19 Vaccines in Rheumatic Disease Patients.

Health Disparities 

The impact of racial/social health disparities and discrimination on patients was a huge topic at ACR this year.

Researchers and clinicians shared information about the many ways that someone’s age, sex, race/ethnicity, and socioeconomic backgrounds could impact their risk of developing, diagnosing, treating, and managing their disease and overall health and quality of life. They also addressed how explicit and implicit bias impacts different identity groups.

Several studies and patient posters shed light on how language barriers as well as ethnic and racial health disparities can result in mistrust with the health care system and lack of adequate care. Another key message: Health care providers can’t ignore the effects of poverty and unemployment on patients.

For more details on all of this and more, check out our guide: ACR 2021: 9 Important Research on Rheumatology Health Disparities.

Mental Health

Getting a COVID-19 vaccine may help improve anxiety, fatigue, and sleep issues in inflammatory disease patients

Protection from the COVID-19 vaccine may help patients’ mental health, shows research from the University of California, San Francisco and Washington University. Researchers evaluated surveys about fatigue, anxiety, depression, sleep disturbance, social participation before a group of 310 patients with chronic inflammatory diseases received the COVID-19 vaccine and again after they were fully vaccinated. They found that sleep disturbance significantly decreased after the vaccine. Results were particularly impactful for people who were considered to have high anxiety at baseline; they also experienced improvements in fatigue, anxiety, sleep disturbance, and social participation.

Huge gaps exist in rheumatology providers referring patients for mental health services

Depression and anxiety are incredibly common in people with rheumatic diseases, and rheumatology providers could play a unique role in helping refer people to mental health services to get necessary diagnosis and treatment. But a study conducted at Loma Linda University suggests this is not happening. Researchers looked at data on 6,154 patients seen in a rheumatology clinic over two years (February 2019 to February 2021) — and only 63 people (1 percent) were referred to mental health providers. Of those, only one-third were actually seen by a mental health provider.

While the researchers recognized that the COVID-19 pandemic, which began in the middle of the study period, may have contributed to fewer referrals to mental health services, “there was, in fact, a greater need for mental health optimization during this time, with anxiety and depression being more prevalent in patients with rheumatic disease during the COVID-19 pandemic.”

More research is needed to understand how common mental health referrals are at other academic medical centers and among private practice rheumatologists, but these eye-opening results show important it is to look at how providers and patient are approaching mental health screening and how to overcome barriers to getting rheumatology patients this critical mental health care.

Tracking ‘psychosocial well-being’ may be critical for helping people reach remission

Getting to remission with a chronic rheumatic disease like rheumatoid arthritis isn’t just about lowering inflammation and disease activity — and new Belgian research sheds light the role that mental well-being also plays in the process. Researchers analyzed data on 379 newly diagnosed RA patients who had completed a number of different surveys about mental health, coping, and psychological well-being. They found, perhaps not surprisingly, worse psychological well-being and poorer scores on surveys about ability to cope well with chronic illness was associated with lower odds of achieving disease remission after four months. What’s more, even among patients who were in remission, those who had worse psychosocial scores tended to lose remission sooner.

U.S veterans with anxiety or depression have an increased risk of inflammatory arthritis

While a lot of research on mental health in rheumatic disease focuses on how having a rheumatic disease is associated with worse mental health, the relationship may also work the other way: Could having depression and anxiety increase the risk for developing inflammatory arthritis? Researchers from Salt Lake City Veteran Affairs and the University of Utah add to our understanding of this issue with a large analysis of more than 1.3 million U.S. veterans, comparing those who were diagnosed with a mental health disorder with those who were not over the course of 13 years. They found that veterans with a mental health diagnosis had 60 percent greater odds of being diagnosed with inflammatory arthritis (such as rheumatoid arthritis, psoriatic arthritis, or ankylosing spondylitis) than those without a mental health diagnosis. The researchers say their work can help inform future effort to identify shared risk factors.

Diet & Exercise

Eileen Davidson notes that seeing research on diet and exercise is very important for patients looking for practical tips and encouragement. “​​While I already know exercise helps with my pain and fatigue, research like this also gives me major motivation and inspiration to take charge of my health or helps me fill in gaps with my care routine I might need to address,” she says.

Vitamin D and omega-3 supplements may have a role in preventing autoimmune diseases

Research on the role of supplements for reducing the risk of autoimmune diseases has been mixed — and large, randomized controlled trials have been lacking. As part of a bigger study to look at whether omega-3 and vitamin D affect heart disease and cancer risk, Harvard researchers did a separate analysis to see if people who took omega-3 or vitamin supplements would have a lower future risk of developing autoimmune diseases, including rheumatoid arthritis, polymyalgia rheumatica, psoriasis, and others. They randomized 25,871 participants to take either vitamin D supplements or a placebo, then randomized them again to also take either omega-3 supplements or a placebo, then followed the group for a median of five years to compare differences in the development of new autoimmune diseases. It was an older patient population, with an average age of 67, about half women and half men.

What they found: taking either or both supplements reduced new cases of autoimmune disease by 25 to 30 percent compared to taking neither. The effects of vitamin D appeared stronger after taking them for two years. However, it’s unclear how these results would apply to younger patients.

“The clinical importance of these results is very high given that these are well-tolerated, non-toxic supplements, that there are no other known effective therapies to reduce incidence for autoimmune diseases,” study coauthor Karen Costenbader, MD, MPH, director of the Lupus Program at Brigham and Women’s Hospital, said of the results, reported Healio Rheumatology.

Following an anti-inflammatory ‘itis’ diet may relieve fatigue in inflammatory arthritis

Fatigue is one of those debilitating symptoms of inflammatory rheumatic diseases that doesn’t always improve along with inflammation-related disease activity. It can be harder to treat and usually requires a well-rounded approach beyond just taking disease-modifying medication. University of California, San Diego researchers who have been studying how dietary interventions may help improve fatigue in rheumatoid arthritis reported some promising results at ACR. They had 20 RA patients follow a special anti-inflammatory diet (called the “itis” diet) for two weeks, taking stool and blood samples before and after to see if they could make connections between microbiome changes and changes in symptoms. About half of patients experienced more than a 50 percent improvement in fatigue, and among those who did, researchers observed changes in the diversity of their microbiome (the bacteria in their gut) and found more anti-inflammatory compounds in their blood.

It’s interesting that this improvement occurred over such a short period of time — two weeks — and shows promise for improving our understanding of how making lifestyle adjustments can help some of the most challenging symptoms of chronic illness.

Online exercise classes catered to musculoskeletal conditions helped improve symptoms and provide social connectedness during the pandemic

Hospital for Special Surgery researchers reported on a program they implemented during the COVID-19 pandemic, in which they started providing 60-minute exercise classes to patients via Zoom (Pilates, yoga, and tai chi). They found that people who took the classes over the course of six weeks reported a 9 percent decrease in pain and stiffness; those who took classes at least twice a week reported even more improvements in pain and stiffness, as well as improvements in mood, walking ability, enjoyment of life, sleep, and other factors. Because the classes encouraged dialogue among the participants, researchers said that the program helped foster social connectedness and reduced the negative impact of isolation.

High-intensity interval training may be okay for some arthritis patients

Many patients with rheumatic diseases have concerns about exercising safely. They may know exercise is good for them in terms of maintaining a healthy weight, building muscle to support healthy joints, and treating fatigue, but worry about things like injury or making their arthritis joint damage worse. A small study on people with psoriatic arthritis from Norwegian researchers provides some reassurance. They randomized a group of 41 people who were in low to moderate disease activity to do high-intensity interval training on a stationary exercise bike for 11 weeks; a control group was told to continue their pre-study exercise habits.

What they found: There were no differences in objective markers of disease activity between the two groups, such as swelling in the sacroiliac joints or spine. The researchers concluded that physical exercise does not cause objective signs of increased disease activity in PsA. While the right exercise plan for a given person is subjective and individual, these results could provide some reassurance for people who feel well enough to exercise at a higher intensity. It’s always a good idea to work with a physical therapist or a personal trainer experienced in working with people with chronic pain and arthritis for advice on creating your workout plan.

Being part of patient groups is linked with getting physical activity

European researchers surveyed 2,846 people with axial spondyloathritis to better understand which factors were associated with those who engaged in physical activity. Among those that were linked to greater probability of engaging in physical activity were being male, university educated, less spinal stiffness, and better mental health, but a surprising factor that that stood out was whether people were part of patient organizations: Belonging to a patient group was associated with a 90 percent increased odds of engaging in physical activity. Acknowledging that exercise is an important part of axSpA care, the researchers concluded that “patient organizations play a critical role in enhancing access to and participation in physical activity.”  The study didn’t get into details about the kinds of groups people were part of or in what ways they might encourage exercise. But the results speak to the importance of finding your chronic disease community, which may help provide encouragement and support to pursue healthy lifestyle changes.

Integrative Approaches to Pain Management

“Not Just Another Pill! Integrative Pain Management Approaches” was a very popular session at ACR this year for patients and providers alike. A panel of experts reviewed the latest evidence for non-pharmacologic approaches to pain management, acknowledging that while “pain is the predominant symptom that interferes with participation in daily life activities for people with many rheumatic and musculoskeletal diseases and conditions … unfortunately, response to drugs and other medical interventions is often suboptimal.”

Patient advocate Eileen Davidson called this session her favorite of the conference, because it reflected so much of her experience finding a well-rounded approach to pain management after she was diagnosed with rheumatoid arthritis and osteoarthritis. “If only family doctors had this training, maybe so many of us would get diagnosed sooner and treated effectively faster.”

Rinie Geenen, PhD, a psychology professor at Utrecht University in the Netherlands, spoke about treating the person — not just the pain. “We have to go beyond just targeting inflammation because many times there is irreversible joint damage or comorbidities that cause us a lot of pain too,” Davidson says, noting that Dr. Geenen’s emphasis on using a “biopsychosocial perspective” when treating pain resonated with her. “This approach puts focus on health-related quality of life, well-being, function, fatigue, sleep, and so forth.”

In a presentation from Christine Stamatos DNP, ANP-C, Director of the Fibromyalgia Wellness Center at Northwell Health, she said that treating a patient’s inflammation, sleep, and mood are essential components of managing pain — and if you don’t address these, nothing works. Treating chronic pain “takes an armamentarium,” she emphasized — it has to be more than drugs, shots, and surgery.

One takeaway that stuck with Davidson was a metaphor from Stamatos about how living with chronic pain is like trying to drive a car with a flat tire; managing pain effectively means making sure all four tires move smoothly: 1) medical treatments; 2) physical strength and endurance; 3) social support and worth; and 4) coping strategies and self-management.

Fibromyalgia

 

“Fibromyalgia is inextricably linked with multiple inflammatory diseases, but there is still so much that is unknown about the connection regarding pain and central sensitization to bring about better care,” says patient advocate Jennifer Walker, who lives with fibromyalgia (as well as rheumatoid arthritis, axial spondyloarthritis, and other chronic conditions). Walker noted that ACR sessions addressed the fact that not enough BIPOC representation is found in fibromyalgia research. “Experts discussed the need to break down barriers so that people who have been legitimately distrustful of health care institutions can be included in this research going forward.”

Virtual therapy could help improve pain and sleep for fibro patients

Forms of cognitive behavioral therapy can an important part of fibromyalgia treatment for some patients. CBT is a type of psychotherapeutic therapy that aims to change how you think about pain and deal with illness more productively.

Unfortunately, cost and/or geography barriers can prevent patients from using this therapy. Researchers set out to determine if at-home digital behavioral therapy could be a viable option for patients with limited access. They developed a smartphone-based Acceptance and Commitment Therapy (ACT) program for fibromyalgia, which consisted of more than 40 daily sessions, including mindfulness practices and activities to encourage exercise and lifestyle changes.

Participants used the app for 12 weeks, at least five days a week. They found that half of people who used the app showed a 20 percent or more improvement in fibromyalgia symptoms. As a control, they had a separate group of patients do daily symptom tracking; only 25 percent of people in this group showed the same improvement in symptoms.

Pain, fatigue, anxiety, and depression can play a role in sleep problems in women with fibromyalgia

We know that fibromyalgia and poor sleep are bedfellows — with studies showing 70 percent to 80 percent of patients experiencing non-restorative sleep.

A University of Florida study at ACR evaluated female fibromyalgia patients with pain, fatigue, depression, and anxiety — and found a strong correlation between those symptoms and poor sleep.

“Given the severity of sleep disturbance reported in this population, strategies to combat this problem are needed to reduce symptom burden in this vulnerable population,” noted researchers. “This study provides evidence to prompt the development and testing of personalized interventions to mitigate sleep disturbance and improve functionality and quality of life for individuals with FMS.”

Medical marijuana may help with the pain and loss of sleep of fibromyalgia

Fibromyalgia can be tricky to treat, with many patients relying on a combination of different medications and treatments (like physical therapy and psychological counseling) for symptom management.

A Canadian study of more than 300 fibromyalgia patients, mostly female, suggests that medical marijuana cannabis (MC) might play a key role. Study participants were given a combination of THC and CBD over a course of a year, which resulted in reduced pain and improved sleep for participants who completed the study.

“These findings are a move towards precision medicine in MC recommendations for treatment of FM,” noted study authors.

If you’re interested in trying marijuana to treat your fibromyalgia, talk to your doctor. Marijuana can trigger a range of reactions in different people; plus, there’s a chance it could interact with other medications you take.

Supporting Patients at Work

An ACR highlight this year was the ability to participate in “study group” sessions that brought together various expert collaborators to approach practical issues in rheumatic disease management. One such session called “Promoting an Interdisciplinary Approach to Supporting Persons with Inflammatory Arthritis at Work” was particularly insightful and validating for patient advocate Charis Hill, who was struggling to maintain employment when they were first diagnosed with ankylosing spondylitis.

The session, which included experts drawn from social work, occupational therapy, physical therapy and rheumatology, as well as the patient perspective, emphasized the fact that work is more than just paid employment, says Hill. “‘Work’ is also an activity of daily living and should include life skills. Experts emphasized the importance of considering the context of people’s lives outside the medical world when it comes to inflammatory arthritis and work.”

For example, Hospital for Special Surgery rheumatologist Vivian Bykerk, MD, said she looks at not just whether patients can get to work and do their job, but how much energy do they have left over at the end of the day? Are they getting home and going to sleep at 7:30?

Hill says they were one of the patients Dr. Bykerk was talking about: “I was going to work and then going home and collapsing. I had no quality of life. When I finally got social security disability my whole life improved. I was able to be healthier because my body wasn’t running on fumes just trying to work.”

It’s important for patients to know that these kinds of conversations are happening at medical conferences, says Hill. It’s one thing to research and disseminate statistics about the barriers to maintaining employment among people with arthritis, but it’s another to hearing different care providers discuss how they approach this issue with patients. “There are medical providers out there who really do see our lives as impacted in all ways by our diseases,” says Hill.

Family Planning & Pregnancy

Many rheumatic conditions disproportionately affect young women in their childbearing years, which makes research on contraception, fertility, pregnancy, and breastfeeding critically important. Research in these areas continues to be highlighted at ACR, with some important new findings below. However, one area that is sorely lacking in research, notes patient advocate Eileen Davidson, is how to better support postpartum parents with inflammatory arthritis. (Davidson was diagnosed with rheumatoid arthritis when her son was 2; her symptoms became progressively worse during and after pregnancy.)

Researchers are learning more about the risks of preeclampsia in rheumatic disease pregnancies

Preeclampsia is a dangerous pregnancy complication characterized by high blood pressure that can be life-threatening to expectant women and their babies. In a study presented at ACR, a team of European researchers sought to better understand how different rheumatic diseases might be at risk of preeclampsia. Using national registry data from Sweden and Denmark, they identified 1,739 rheumatoid arthritis pregnancies, 819 axial spondyloarthritis pregnancies, and 489 psoriatic arthritis pregnancies, and matched patients with healthy controls to compare outcomes. What they learned: There was an increased risk of preeclampsia generally in PsA pregnancies compared to controls, but not in RA or axSpA. With RA, however, severe disease seemed to be a risk factor for preeclampsia, as women with high disease activity during pregnancy had double the risk compared to healthy controls.

Pregnant women with spondyloarthritis who were on biologics at conception did not have an increased risk for complications

A German study of 140 spondyloarthritis pregnancies provides some reassuring news for people who have questions about taking biologics at conception and during pregnancy. The researchers found that women on biologics at conception (38 people) were not at an increased risk for poor pregnancy outcomes compared to women who were not taking them (74 people). Researchers also looked at the risk of having flares during pregnancy among three groups of women in the study: those who were not on biologics at all, those who were on them at conception and stopped, and those who remained taking them throughout pregnancy. They found that the group who was on biologics and stopped had more disease during pregnancy with an even higher increase of disease activity after giving birth. Those on biologics throughout pregnancy had the lowest disease activity over the study.

If you’re thinking of getting pregnant, make sure you talk to your rheumatologist and ob-gyn about your medication regimen. While some rheumatic disease medications cause birth defects and need to be stopped (for example, methotrexate), there are many other medications that are safe to take during pregnancy and breastfeeding — and staying on them may even lead to better outcomes for you and your baby because disease flares can be associated with complications.

Men with rheumatic diseases may not be sharing reproductive health concerns with their rheumatologist

Noting that few studies have comprehensively evaluated the education and priorities that men with rheumatic diseases have about their sexual and reproductive health (SRH), researchers from the University of Pittsburgh conducted in-depth interviews with 18 men, where they identified some common themes about their concerns: 1) Men had family planning concerns, particularly related to the heritability of their diseases, their fertility, and potential effects of their medications on their offspring’s health; and 2) Men felt that fatigue, disability, and/or pain from their diseases either impaired or would impair their abilities to parent.

Importantly, the participants said they rarely discussed their sexual or reproductive health with their rheumatologists, in part because they assumed their doctor would start the discussion. They also said they rarely discussed sexual dysfunction with their rheumatologists, even if they thought it could be related to their disease or antirheumatic medication. The authors concluded that rheumatologists may need to broach these topics with male patients as part of routine care and counseling.

Pollution and Climate Change

In an eye-opening session at ACR, Frederick Miller, MD, PhD, an environmental scientist at the National Institutes of Health, showed how climate change is affecting the health and disease outcomes specifically of people with rheumatic disease. “The impacts of climate change are often greatest in those least able to adapt to or mitigate these changes – often the young, pregnant, elderly, immunocompromised, lower socioeconomic and minority groups, those with pre-existing conditions or with mobility or cognitive constraints,” Dr. Miller said in his presentation. A few examples:

• Greater ultraviolet light exposure is linked with more flares in diseases like lupus and dermatomyositis.
• Rising temperature and carbon dioxide levels will necessitate an increased use of pesticides — and exposure to these chemicals is linked to an increased risk of diseases like rheumatoid arthritis and lupus.
• Rising carbon dioxide levels reduce the levels of nutrients (such as zinc, iron, and protein) in crops, which may affect immune system function and cause microbiome changes linked with autoimmune disease.
• Climate change can increase the risk of vector-borne diseases like Lyme and West Nile, which can cause immune-mediated complications.
• Exposure to climate disaster can cause mental health consequences, and long-term stress may affect immune system function and be associated with the development of autoimmune diseases.
• Certain medications can increase the negative effects of high temperatures.
• Extreme weather disasters can impair access to health care, medication, adequate food, water, and housing, and patients with disabilities and chronic health problems are particularly vulnerable.

What was so impactful about Dr. Miller’s talk, though, was its emphasis on action and how rheumatology providers can adapt to help patients navigate and cope, using such examples as:

• Guiding and educating patients on emergency weather plans
• Increasing the weather resilience of health systems so patients can maintain access to care
• Educating patients on UV protection and photosensitive medication
• Educating patients about vector-borne disease and how to minimize exposure
• Educating patients about ways to avoid exposure to pollutants, such as with air purifiers and organic food

“Health care providers have important roles in increasing the climate resilience of health care systems to prepare for these changes, and in educating, preventing and protecting our patients from the adverse effects of climate change,” Dr. Miller said.

Patient Perspectives

And last but most certainly not least: CreakyJoints invites patient advocates to attend ACR because we feel strongly about facilitating patients’ ability to share their voice and expertise with health care providers and researchers.

“My work at ACR is not just to gather information and report back to patients,” says disability advocate Charis Hill, who lives with ankylosing spondylitis. “I intentionally use the opportunity to maximize my interactions with health care providers and researchers as a colleague. I share patient experiences and concerns and I demonstrate how important it is to further patient involvement as equal partners in all aspects of rheumatology work moving forward: research; drug development; diversity, equity, and inclusion (DEI) initiatives; professional development; and everything else. Patients are primary stakeholders and should be involved in all aspects of the work that impacts us.”

For the fourth year running, ACR has continued to provide a space for patients to produce posters about their lived experiences with rheumatic disease. While there is still admittedly much more that needs to be done to incorporate patient participation, insights, and knowledge, into medical conferences like ACR, maintaining and expanding this part of the program is an important step.

“Every intervention and trial that the medical community conducts is directed toward improvement of the patient’s condition, the patient being the most important stakeholder,” said Puja Khanna, MD, MPH, Associate Professor of Medicine, Division of Rheumatology, University of Michigan in ACR Convergence Today. “However, not all patients experience the same disease uniformly.”

Patient posters give providers the “opportunity to experience the patient’s viewpoint,” said Dr. Khanna, who moderated a session that featured Patient Poster authors presenting their work. This year’s meeting featured 13 posters from patients  — you can see them all here and here. Four were presented by members of the CreakyJoints community.

Patients have invaluable insights into our society and health care system, and should consider sharing them at ACR,” says patient advocate Dawn Gibson, who coauthored a poster about painsomnia in the first year of the Patient Perspectives program back in 2018. The experience, she says, “helped me to find my place in advocacy.”

Gibson appreciated that some of the posters this year addressed issues experienced by marginalized and underserved patients.

“Health disparities are a hot topic, but marginalized voices aren’t always centered,” says Dawn Gibson, who shared that a poster from CreakyJoints member Guadalupe Torres was particularly impactful for her. Torres, who was diagnosed with rheumatoid arthritis when she 16, became disengaged with her health care because of language and cultural barriers related to her young age and being a first-generation Latina.

Read more here about how Torres’ work as a researcher is inspiring her health advocacy and becoming re-engaged in her own personal disease management.

You can also read more about other Patient Perspective posters from the CreakyJoints community:

• How CreakyKitchen, a Virtual Cooking Show, Helped Rheumatoid Arthritis Patient Chantelle Marcial Build a Community During COVID-19
• For Wigna Cruz, Spanish-Language Resources Have Made a Huge Difference in Her Rheumatoid Arthritis Journey
• How Rheumatoid Arthritis Patient Deen Allen Went from Fearing the COVID-19 Vaccine to Encouraging Others to Get Theirs

Learn more about our FREE COVID-19 Patient Support Program for chronic illness patients and their loved ones.

Since the rollout of the COVID-19 vaccine over the past year, there has been a surge in important research on their impact on people with rheumatic diseases. Researchers and patients have been seeking answers about how taking immunosuppressive medication may affect the vaccine’s effectiveness. Other important issues include understanding side effects, the risk for disease flares, vaccine hesitancy, and more.

Though there was a disconcerting lack of data on immunocompromised conditions when the vaccine first became available last year, emerging research is now providing much more information on the COVID-19 vaccine in people with rheumatic diseases. This may help provide better protection to immunocompromised and high-risk people going forward.

Here, you’ll find a round-up of notable recent studies about the COVID-19 vaccines, many of which were just presented at the annual meeting of the American College of Rheumatology, ACR Convergence 2021.

Check out this separate round-up on the latest information on COVID-19 (infection rates, complications, and more) in rheumatic disease patients.

For more research breakthroughs from ACR 2021, check out our main guide: 100+ Arthritis & Rheumatic Disease Updates You Need to Know.

1. COVID-19 Vaccine Side Effects

We now have plenty of data that shows that people with autoimmune and inflammatory diseases do not have a higher risk of experiencing side effects from vaccination than the general population.

In a new study presented at ACR Convergence 2021, 501 patients in the Netherlands with systemic autoimmune diseases and 184 healthy controls were vaccinated against COVID-19, then surveyed about any side effects they experienced. (AstraZeneca and Pfizer vaccines were the most common vaccines in both groups.)

The majority of patients (56 percent) and controls (58 percent) experienced at least one mild adverse event — and a minority experienced at least one moderate adverse event (23 percent versus 21 percent, respectively). Severe adverse events were rare among the patients and controls (1 percent versus 0 percent). Only a small group of patients (5 percent) reported a deterioration in their autoimmune disease after vaccination. This study may provide reassurance for those who are concerned about experiencing adverse effects or disease flares after vaccination.

Meanwhile, in another study presented at the ACR Convergence 2021, researchers surveyed a total of 1,852 rheumatology outpatients in New York City who had received at least one COVID-19 vaccine dose (53.9 percent Pfizer, 44.4 percent Moderna, 1.4 percent Johnson & Johnson vaccine, and 0.3 percent AstraZeneca). Most patients had received two vaccine doses.

Adverse events (symptoms within one week of the vaccine that were not attributed to systemic rheumatic disease flares) at the first or second dose were reported by 73.3 percent of respondents. They most reported:

• Pain at the injection site (45.3 percent)
• Fatigue (38.8 percent)
• Headache (26.2 percent)
• Muscle aches (23.1 percent)
• Sore shoulder (22.2 percent)

The data demonstrate that rheumatology patients experience local or systemic adverse event post-SARS-CoV-2 vaccination at rates similar to estimates from the vaccine clinical trial data. (Less than 1 percent reported severe symptoms such as throat closing, wheezing, fainting, chest pain, difficulty breathing, bleeding, and swelling of the eyes, lips, or other parts of the body.)

Interestingly, another study showed that side effects in certain patients might correlate with vaccine effectiveness. Researchers studied the outcomes of the COVID-19 vaccines in 134 patients with chronic inflammatory disease and 44 healthy controls. They found that a higher number of reported symptoms was associated with higher antibody titers — each increase of one symptom (such as headache, fatigue, or muscle ache) was associated with a 15.9 percent increase in antibody levels. This study shows that when symptoms are present in inflammatory disease patients, they could be important indicators of vaccine response.

2. COVID-19 Vaccine and Disease Flares

The risk of disease flare after vaccination against COVID-19 appears to be small.

In a study presented at ACR Convergence 2021, Canadian researchers enrolled 220 participants — including 131 with rheumatoid arthritis, 23 with lupus, eight with other rheumatic disease, and 58 controls. Although swollen joints following both doses of an mRNA COVID-19 vaccine were more frequently reported by rheumatoid arthritis patients than controls, researchers saw no clear increase in disease activity scores post-vaccination. There were also no serious adverse events attributed to the vaccine.

Another study of lupus patients in Europe found that vaccine side effects were common but minor or moderate in more than 80 percent of lupus patients. Only 3 percent of 696 patients self-reported a medically confirmed lupus flare. These flares mainly consisted of musculoskeletal symptoms (90.5 percent) and fatigue (85.7 percent).

3. COVID-19 Vaccine Effectiveness and Immunosuppressant Medication

Several studies have shown that immunosuppressive therapies do affect vaccine effectiveness, but the specific therapies matter. For instance, rituximab has been shown repeatedly to impair immune responses to the COVID-19 vaccine, while medications like TNF inhibitors may have more modest effects.

“There’s been a lot of advancement in understanding which populations of patients are going to be more vulnerable to having poor vaccine responses,” says researcher Alfred Kim, MD, Assistant Professor of Medicine, Pathology, and Immunology at Washington University, who presented at ACR about how immunosuppressive medications impact response to the vaccine.

In a new systematic review and meta-analysis presented at the ACR Convergence 2021, researchers analyzed the results of eight different studies published from January 1, 2021 to May 30, 2021, which included data on 1,482 rheumatic disease patients. They found that the majority of rheumatic patients developed an antibody response following their second vaccine dose, but it was lower compared to healthy controls.

Here’s a look at specific medications that have been associated with a decreased response to the vaccine.

Methotrexate

A few studies indicate that methotrexate can somewhat hamper the response to the COVID-19 vaccine. Dr. Kim’s research found that methotrexate reduced antibody levels but by not nearly as much as certain other medications, such as rituximab or mycophenolate. For example, in a study presented at ACR Convergence 2021, researchers found that 80 percent of patients from a North Carolina rheumatology practice who were on methotrexate alone had an antibody response after vaccination.

Talk to your doctor about the optimal timing for your medication and the COVID-19 vaccine (including additional doses and/or boosters): Current American College of Rheumatology guidance recommends holding methotrexate for one to two weeks (as disease activity allows) after each COVID-19 vaccine dose.

Oral Steroids

Steroids such as glucocorticoids appear to decrease the immune response of the COVID-19 vaccines. Dr. Kim’s study that looked at the effects of medication on COVID-19 vaccine immune response in 197 adults with chronic inflammatory diseases and 53 immunocompetent controls before their initial vaccine dose and one to two weeks after the second dose. Researchers found that glucocorticoids had a 13-fold reduction in immune response in patients compared to immunocompetent controls.

JAK Inhibitors

In the study in which researchers measured antibody levels in patients with autoimmune inflammatory rheumatic disease in North Carolina, 91 percent of patients on JAK inhibitors tested positive for antibodies. In Dr. Kim’s research, JAK inhibitors blunted antibody levels, but not as much as glucocorticoids or B-cell depletion therapy (like rituximab).

More research is needed to determine the best timing for JAK inhibitors and COVID-19 vaccine doses. ACR guidance recommends holding JAK inhibitors for one to two weeks after each COVID-19 vaccine dose if disease activity allows. 

TNF Inhibitors

In the study from Dr. Kim’s research team, TNF inhibitor biologics had only modest impacts on antibody formation and neutralization against the earlier coronavirus variants.

But in a preliminary study of 74 patients with chronic inflammatory diseases, Dr. Kim’s research team found that there were significant reductions in neutralizing antibodies against variants of concern in those treated with TNF inhibitors, such as the Delta virus. “Neutralizing” means an antibody can prevent cells from becoming infected with a virus in a culture dish in a laboratory setting.

“With TNF inhibitors, it’s unclear how this is all going to play out,” says Dr. Kim. “While we have data that shows TNF inhibitor users have poor neutralization potential to Delta, data from the pre-Delta period showed that TNF inhibitor use was two-fold more protective against hospitalization due to COVID-19 compared to methotrexate users. We’ll need to see what the breakthrough infection rate is for TNF inhibitor users during the Delta period to see whether the neutralization data is clinically meaningful.”

Current ACR guidance is mixed on whether or not to recommend hold TNF inhibitor biologics after each vaccine dose. This is because it’s not clear how much of an impact these medications have on vaccine effectiveness. It’s a decision each patient can make with their doctor based on their disease activity, underlying health conditions, and other factors.

Rituximab

Rituximab (Rituxan) is a major drug of concern in terms of COVID-19 vaccine effectiveness. At least four separate recent studies have found that the drug dramatically impairs immune response to the COVID-19 vaccine. (Rituximab is a B-cell depleting agent, which means it gets rid of B cells in the immune system. B cells, however, are necessary for antibody production.)

For instance, a July 2021 study in the Annals of the Rheumatic Diseases analyzed data from 74 patients under rituximab treatment who were vaccinated twice with either the Pfizer or Moderna vaccine (15 healthy individuals served as controls). While all healthy controls developed antibodies, only 39 percent of the patients under rituximab treatment did.

Circulating B cells correlated with the levels of antibodies. “The data suggest that vaccination can induce SARS-CoV-2-specific antibodies in RTX-treated patients, once peripheral B cells at least partially repopulate,” note the authors.

Dr. Kim’s research has shown that in patients on B-cell depletion therapy, the lack of response to the vaccine was seen primarily in those receiving vaccination within six months of administration (with gradual recovery of antibody response to vaccination nine months after treatment with rituximab).

Current ACR guidance recommends discussing the optimal timing of dosing and vaccination with your rheumatologist. Some practitioners will measure B cells as a tool to determine booster and subsequent rituximab dosing. (See “Evaluation Before Vaccine.”) For those who elect to dose without that information or for whom measurement is not available, the guidance recommends getting the COVID-19 vaccine two to four weeks before your next anticipated rituximab dose. This is when B cell levels are likely to be highest.

4. Evaluating B Cells Before Getting the COVID-19 Vaccine

Evaluating B cell counts could help inform timing of vaccination in systemic rheumatic disease patients on rituximab and belimumab.

A new study presented at ACR Convergence 2021 showed that B cell replenishment (when your immune system has time to naturally start making B cells again) is strongly associated with COVID-19 vaccine responsiveness in rheumatic disease patients who are treated with rituximab.

In the study of 58 patients, 41 patients (71 percent) had B cell status measured at the time of an antibody test. Time from the last rituximab dose was significantly longer in patients who showed positive antibody responses than those who did not. In fact, seropositivity (the formation of antibodies) was 76 percent among those who last had rituximab exposure more than six months beforehand — but that increased to 92 percent in those with detectable B cells.

“Rituximab has been known to block complete antibody responses to COVID-19 vaccines when B cell numbers are undetected,” says Kyriakos A. Kirou, MD, DSc, FACP, rheumatologist at Hospital for Special Surgery, who did a separate study on the COVID-19 vaccine response in people on B cell therapies. “However, when B cell numbers increase to normal levels, patients can respond better to the vaccines.”

Considering B cell counts could be key for evaluating the best time to receive the COVID-19 vaccine for patients on these medications.

“Patients on rituximab should discuss with their rheumatologist the timing of COVID-19 vaccination,” says Dr. Kirou. “If their disease is stable and allows some delay, waiting until the B cell number comes up, even to a small percentage, would be helpful to allow response to the vaccine.”

Your doctor may measure your B cell levels and provide recommendations based on the results — whether that involves waiting longer after your last rituximab dose for your B cell levels to rise or moving forward with vaccination.

5. Breakthrough COVID-19 Infections

How common are breakthrough infections — getting COVID after being fully vaccinated — in rheumatic disease patients? What factors make people more likely to experience one? The research is starting to emerge, but it’s too early to draw definite conclusions.

One study from the Global Rheumatology Alliance, an international registry of rheumatic disease patients who’ve had COVID-19, identified 115 fully or partially vaccinated people who then developed COVID-19. Of the majority of fully vaccinated people (39 total), most were on B-cell depleting drugs (like rituximab) or antimetabolite medications (such as methotrexate).

In a separate study, researchers looked at a large national database of 47,303 people with various rheumatic diseases and compared them to a control group of people without rheumatic diseases (536,954). They found that generally, having an autoimmune or inflammatory rheumatic disease increased the odds for breakthrough infection. The prevalence of breakthrough COVID-19 infections per 1,000 persons after full vaccination were as follows for those without an autoimmune or inflammatory rheumatic disease versus those with an autoimmune or inflammatory rheumatic disease, respectively:

• Pfizer: 19 versus 36
• Moderna: 16 versus 33
• Johnson & Johnson: 26 versus 47

After researchers adjusted for such factors as age and comorbidities, rheumatoid arthritis, lupus, systemic sclerosis, and polymyositis were associated with increased odds of breakthrough infection. Researchers say they will “next examine the contribution of various drug exposures potentially influencing the higher risk of breakthrough infection.”

These results support the recent COVID-19 booster recommendations for people with autoimmune or inflammatory rheumatic disease.

“We don’t know what level of antibodies are sufficient to generate protection, and this gets more complicated with the immunocompromised, because many of our drugs work at multiple levels in the immune system,” says Dr. Kim. “So in an immunocompetent person, you may be able to define a threshold of protection in terms of antibody levels. Whether that same threshold is true for the immunocompromised, that’s a tricky argument to make, because there are so many impacts on the immune system that the drugs have.”

6. Extra Vaccine Doses in the Immunosuppressed

 How do third vaccine doses improve immune response in the most immunosuppressed patients — and does the type of booster matter? In a blinded randomized clinical trial, Austrian researchers assigned 60 patients under rituximab treatment who did not “seroconvert” (develop antibodies) after their primary mRNA vaccination with Pfizer or Moderna to receive a third dose, either using the same mRNA vaccine or the vector vaccine (AstraZeneca).

They found that about 27 percent of patients developed antibodies when tested a month after receiving the third vaccine dose, and the rates were comparable between the two types of vaccines.

“This study means that in some people on rituximab, which is particularly problematic for immune responses, a quarter of them can get some response to a third dose,” says Dorry Segev, MD, PhD, a transplant surgeon and researcher at Johns Hopkins Medicine, who was not involved in the study. “What they’ve shown is they didn’t see a difference between mRNA versus vector-based additional doses. One did not seem to be superior to the other, though both of them had relatively low rates of seroconversion.”

More research is needed on how extra doses affect the immune response (and breakthrough infections) in other types of immunosuppressive medication.

7. Vaccine Hesitancy

Experts are continuing to research causes of vaccine hesitancy, which may help inform how to encourage vaccination in rheumatic disease patients.

In a new study led by Medha Barbhaiya, MD, a rheumatologist at Hospital for Special Surgery, 2,384 patients completed a web-based vaccine hesitancy questionnaire on March 5, 2021; 94 percent were willing to receive or had already received the COVID-19 vaccine. However, 88 patients (3.7 percent) were undecided and 56 patients (2.3 percent) reported vaccine refusal. Undecided patients were least likely to have received other vaccines as adults, and those refusing the vaccine were most likely to have previously been infected with COVID-19. Systemic lupus erythematosus-like diseases were highest in those refusing the vaccine.

In a separate study, CreakyJoints and the Global Healthy Living Foundation (GHLF) conducted an online survey from our ArthritisPower registry between February 9 and March 24, 2021. While 54 percent (of 1,345 people) reported having been offered a COVID-19 vaccine, only 42 percent had received at least one dose of the vaccine.

Among those not vaccinated, almost 18 percent said they were unlikely to get vaccinated. The most common reasons for not getting vaccinated were use of immunosuppressive medications (52 percent), concerns of disease flare (51 percent), fear of side effects (31 percent), prior reactions to other vaccines (21 percent), and fears about the vaccine modifying DNA (16 percent).

It’s worth noting that both of these studies took place during the initial COVID-19 vaccine roll-out — and that attitudes and perceptions about the vaccine have likely shifted since then.

“Fear of flare-ups has been cited as a reason to not get the vaccine,” says Dr. Barbhaiya. “It’s an understandable concern, of course, but the literature is in general very supportive of the fact that there’s a very low risk of flares.”

Looking Ahead to Future Research

In coming months, we will learn more about the long-term efficacy of the vaccine and what that means for rheumatic disease patients.

“The six-month to one-year responses to the vaccine are going to be even more important than the short-term responses that almost everyone’s been reporting on — short-term meaning, say, the one to two weeks after the mRNA vaccine,” says Dr. Kim. “Those responses are very immature compared to the responses that eventually settle.”

Overall long-term vaccine response is important not just with regard to antibodies, but also in terms of other immune system components, such as B cells and T cells. More research will be emerging about this over the next six to 12 months, adds Dr. Kim.

Researchers will also be looking closely at the role of ongoing extra vaccines doses in immunocompromised patients.

“One big discussion right now is how do we get people to an adequate level of immunity who are immunocompromised,” says Dr. Segev. “Obviously, in some people two doses wasn’t enough. And in some people, three doses may not be enough.”

More research is needed to determine if immunocompromised people will need boosters (fourth doses) in addition to their extra third dose (and at what time intervals), and what kinds of boosters are ideal.

For people who can’t get enough protection from multiple doses of the vaccine, researchers will be examining other treatments, such as monoclonal antibodies or antiviral medications, as a potential preventive measure (even for those not yet exposed to COVID-19).

“Right now, we only allow monoclonal antibodies after somebody’s been exposed, but there are questions around if we can use pre-exposure prophylaxis to protect somebody who can’t get protected from the vaccine,” says Dr. Segev.

Get Free Coronavirus Support for Chronic Illness Patients

Join the Global Healthy Living Foundation’s free COVID-19 Support Program for chronic illness patients and their families. We will be providing updated information, community support, and other resources tailored specifically to your health and safety.

Learn more about our FREE COVID-19 Patient Support Program for chronic illness patients and their loved ones.

Have you been exercising more, less, or in different ways during the COVID-19 pandemic? It would likely surprise few to learn that the COVID-19 pandemic has affected people’s physical activity levels, but new research shows the extent of the perceived impact for patients with rheumatic and musculoskeletal diseases (RMDs).

People with certain rheumatic conditions may have different experiences with physical activity during the pandemic than the general population for many reasons, such as living with chronic pain or trying to stay home as much as possible because of their immunocompromised status.

In a new study presented at ACR Convergence 2021, the annual meeting of the American College of Rheumatology, researchers identified a sample of 7,776 adult patients with RMDs through an academic healthcare system in North Carolina. These patients received invitations to participate in an online survey between July and September of 2020 to assess self-reported changes in physical activity during the COVID-19 pandemic, barriers to physical activity, and health and well-being.

Of the initial sample, a total of 1,133 participants completed the survey. Over half of the participants (55.5 percent) reported that they engaged in less physical activity since the start of the pandemic. Factors associated with less reported physical activity included male sex, lower income during the COVID-19 pandemic, poorer self-reported health status, self-reported lupus (SLE) diagnosis, and self-reported comorbid chronic pain, depression, and hypertension.

The average age was 57 years and 75 percent of respondents were female.

“It was eye-opening to see how the COVID-19 pandemic has affected so many people’s physical activity, especially patients with lupus,” says Teresa Dickson, the lead author of the study and Clinical Research Coordinator on the research team of Dr. Saira Sheikh at the University of North Carolina at Chapel Hill, Thurston Arthritis Research Center. “This study showed a diagnosis of SLE was associated with lower self-reported physical activity.”

Most participants (67 percent) reported not meeting their exercise goals during the COVID-19 pandemic. The most common reported barriers to physical activity included increased overall fear and anxiety (33.5 percent), lack of motivation (33 percent), and fear of contracting COVID-19 specifically (32 percent).

Researchers anticipated that closures of public exercise facilities and parks would impact physical activity among patients with rheumatic disease — and they expected to see the associations with decreased physical activity among patients with depression, since previous studies have shown associations between depression and physical activity, says Dickson. The researchers also weren’t surprised that people who reported poor overall health participated in less physical activity.

“Widespread barriers to physical activity were reported in our study and are likely to continue impacting individuals beyond the COVID-19 pandemic,” says Dickson. “Lack of motivation was a barrier prior to the pandemic, exacerbated by the pandemic, and will likely remain a barrier to physical activity beyond the pandemic unless it is addressed head-on with tailored interventions.”

Although many barriers to physical activity still exist, there is hope that the COVID-19 vaccines will play a role in reducing at least one of them.

“We are optimistic that with widespread availability of the COVID-19 vaccine, the fear and anxiety of contracting the coronavirus infection will decrease,” says Dickson.

As with all research, there are limitations of this study: The generalizability of these results may be limited by the single health care system and lack of geographic variability. Online survey distribution may have also restricted participation for those with limited access to the internet, and there was a low rate of responses among the Spanish-speaking population.

However, the research does shed light on the common barriers to physical activity that patients with rheumatic and musculoskeletal diseases face.

“If you are struggling with motivation, we encourage you to find an accountability partner, such as a friend, neighbor, family member, or significant other,” says Dickson. “An accountability partner can provide moral support as well as help meet physical activity goals. If fear or anxiety is a barrier to exercising, we recommend finding safe ways to participate in physical activity such as exercising outdoors, trying an online exercise class, or dancing to music.”

Get Free Coronavirus Support for Chronic Illness Patients

Join the Global Healthy Living Foundation’s free COVID-19 Support Program for chronic illness patients and their families. We will be providing updated information, community support, and other resources tailored specifically to your health and safety.