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On an orange background, there is a red banner in the center with text that reads “CreakyJoints News.” In a blue box above the banner, text reads “#ACR21.” In a purple box below the banner, text reads “American College of Rheumatology Convergence.” Text below this in white reads “2021 Highlights.” Below, there is another text bubble in red with text that reads “Lupus Update” and to the left is a circle with an image of a head with a rash on the cheek.
Credit: Tatiana Ayazo

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.

Brasil C, et al. Impact of systemic lupus disease activity state on flare risk after hydroxychloroquine maintenance, reduction or discontinuation in a multinational Inception Cohort [abstract]. Arthritis & Rheumatology. November 2021.

Cognitive impairment in lupus linked to ‘abnormalities’ in brain functional connectivity. Healio Rheumatology. November 10, 2021.

Ding H, et al. Urinary L-selectin predicts disease activity and histological changes in lupus nephritis [abstract]. Arthritis & Rheumatology. November 2021.

Duarte-Garcia A, et al. Multimorbidity differences between systemic lupus erythematosus patients and comparators in different age groups: a large nationwide US study [abstract]. Arthritis & Rheumatology. November 2021.

Duarte-Garcia A, et al. Racial/ethnic differences in multimorbidity between patients with systemic lupus erythematosus and comparators in a large nationwide US study [abstract]. Arthritis & Rheumatology. November 2021.

Duarte-Garcia A, et al. Sex differences in multimorbidity between patients with systemic lupus erythematosus and comparators in a large nationwide US study [abstract]. Arthritis & Rheumatology. November 2021.

Great debate pits belimumab against voclosporin as first-line therapy for lupus nephritis. Healio Rheumatology. November 6, 2021.

Hanly J, et al. Functional connectivity, enhanced blood-brain barrier leakage and cognitive impairment in systemic lupus erythematosus. [abstract]. November 2021. Arthritis & Rheumatology.

Hydroxychloroquine Dose and Risk of Lupus Flare: Drs. Yuzaiful Yusof and April Jorge. RheumNow. November 9, 2021.

Jorge A, et al. Hydroxychloroquine dose and the risk of systemic lupus erythematosus flares [abstract]. Arthritis & Rheumatology. November 2021.

Katz P, et al. Trauma is associated with flares in systemic lupus erythematosus (SLE) [abstract]. Arthritis & Rheumatology. November 2021.

Pope, J. Racial/ethnic disparity in U.S. lupus nephritis mortality. RheumNow. November 12, 2021.

Rosen E, et al. Cervical Cancer Screening Rate in Women with Systemic Lupus Erythematosus [abstract]. Arthritis & Rheumatology. November 2021.

Reducing, stopping hydroxychloroquine spikes flare risk for lupus patients in remission. Healio Rheumatology. November 11, 2021.

RheumNow Podcast – ACR 2021 Rehash (the good stuff..). RheumNow. November 12, 2021.

RheumNow Rheumatology Roundup: Drs. Kavanaugh and Cush. RheumNow. November 10, 2021.

Saxena A, et al. Voclosporin for lupus nephritis: interim analysis of the AURORA 2 extension study [abstract]. Arthritis & Rheumatology. November 2021.

Sex, Age and Race/Ethnic Differences in Multimorbidity in Lupus: Drs. Duarte and Mehta. ACR Convergence. November 9, 2021.

Voclosporin for lupus nephritis reduces proteinuria with no eGFR change. Healio Rheumatology. November 9, 2021.

Yen E, et al. Lupus nephritis mortality in the united states, 1999-2019: profound disparities by race/ethnicity and place of residence and a recent worsening trend [abstract]. Arthritis & Rheumatology. November 2021.

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