by Emily Harari
Understanding Lupus & the Patient Experience
“I’ve had my death rights read to me six times,” recalls lupus patient advocate Christine Von Raesfeld. She describes a years-long odyssey to reach her diagnosis of systemic lupus erythematosus (SLE), followed by 15 telehealth visits before an underlying heart condition was finally discovered—one that had gone undetected because doctors attributed everything to her lupus.
SLE is a systemic autoimmune disease in which the immune system confuses the body’s own tissues for foreign threats. From the kidneys to the heart to the brain, nearly any organ can be affected. As a result, lupus can look vastly different from one person to the next, earning its reputation as a “heterogeneous” disease—and making it especially difficult to diagnose.
ImYoo sat down with people living with SLE and asked how long it took them to reach a diagnosis. Several described five or more years of worsening symptoms before finally being diagnosed. In hindsight, many recalled early signs such as joint pain, rashes, blood pressure issues, headaches, or flu-like symptoms—symptoms that were often intermittent, non-specific, or not severe enough to prompt blood testing. Even when labs were drawn, some were told they had “almost lupus.” Without meeting formal diagnostic thresholds, patients were sent home without answers, while their immune systems continued to quietly damage their bodies. For many, diagnosis only came once they were hospitalized with full-blown flares or progressed to organ failure.
In addition to SLE, there are several other forms of lupus categorized by cause or primary organ involvement, but SLE commands the bulk of clinical attention due to its prevalence and complexity. An estimated 1.5 million Americans live with SLE. About 90% are women, with incidence rates two to three times higher among Asian, Hispanic, and African American populations [1].
ImYoo interviewed the wife of a lupus patient. “Lupus is not as common in men,” she explained, “so [the doctor] ignored the chances of [my husband having] lupus.”She recounted the events that led to her husband’s lupus diagnosis: “He collapsed at home and had a terrible flare. He ended up in the [emergency room].”
Treating Lupus: The Consequences of Steroids
For some lupus patients, the hospital visits don’t stop after diagnosis. Some of the lupus patients ImYoo interviewed reported 10 to 13 hospital visits in a single year following diagnosis. In part, this reflects the limitations of current tools for monitoring lupus activity.
Disease activity monitoring remains difficult. For many patients, lab values hover at the edges of “normal” ranges. “When you’re at the edge,” one lupus patient explains, “doctors don’t see that.” Common blood tests include ANA, CBC with differential, CRP, sedimentation rate, anti-dsDNA, and metabolic panels— but these markers often fail to reflect how patients actually feel.
A major concern for physicians ordering these labs is catching early signs of lupus nephritis (LN), a form of kidney inflammation that affects roughly half of lupus patients [2]. LN can silently damage the kidneys until patients suddenly find themselves in life-threatening organ failure. The progression from asymptomatic to critical can be strikingly rapid—sometimes unfolding over weeks, days, or even hours. For lupus patients, their health can change on a dime.
Given this unpredictability, and the lack of reliable risk-prediction tools, physicians often turn to steroids for rapid damage control. Within hours to days, steroids can suppress immune overactivation and abort a flare. For a disease that can spiral out of control so quickly, this fast action can be life-saving. But steroids come at a steep cost.
Side effects can appear just as quickly as the relief they bring patients. Within days, patients may notice rapid weight gain, painful fluid retention, and destabilizing mood changes. Immune suppression also increases their vulnerability to infections and cancer, while long-term use raises their risk of osteoporosis and subsequent bone fractures [3]. In theory, steroids are intended to be short-term solutions. In practice, they often are not: 75% of surveyed lupus patients report taking steroids for over a year, and 27% for more than a decade. An overwhelming 96% expressed concern about their long-term use, so what keeps these patients on these drugs? [4]
One reason is that steroids often cannot be stopped abruptly without risking further harm. Instead, they are carefully tapered— a process that introduces its own challenges.
Lupus Challenge 1: Poor Long-Term Treatment Options
Steroids are often used to control symptoms while clinicians adjust longer-term therapies, such as biologics. However, biologics can carry significant toxicity and are not always well-tolerated by patients. Moreover, patients may struggle to get insurance coverage for their biologics. In inflammatory bowel disease (IBD), another autoimmune condition, patients whose insurance denied biologics were more likely to receive steroids and require hospitalization [5]. Unable to stabilize disease activity with biologics, clinicians may keep patients on steroids longer than intended.
Lupus Challenge 2: Subjective Definitions of Lupus “Flares” Undermine Care
How lupus flares are defined presents another obstacle. Rheumatologist Dr. Eric Morand of Monash University distinguishes between patient-reported “symptom flares” and “doctor-measured flares.” In 2024, Morand published a review of research, highlighting that flare assessments remain “susceptible to variation in clinician responses, rather than being a simple objective change in disease activity.” As a result, commonly used blood tests and questionnaires often leave treatment decisions dependent on clinical judgment rather than objective disease signals [6].
In fact, doctors consistently report fewer flares than patients do. While patients often describe debilitating fatigue and musculoskeletal pain, these symptoms may not meet clinical criteria for a flare. One ImYoo participant described symptom flares as feeling “like wet cement poured over my body.” Others spoke of “unbearable” joint pain. For clinicians, these constitutional symptoms can be difficult to distinguish from infections or co-morbid conditions, each requiring distinct treatment approaches. Meanwhile, patients are desperately seeking urgent relief.
As a result, some patients self-administer steroids against medical advice. Several lupus patients ImYoo asked had reported saving leftover steroids “for a rainy day,” anticipating that their symptoms might be dismissed. Morand and his colleague, Dr. Sarah A. Jones, warned that these mismatches between patient- and physician-reported flares “create the potential for a divide between patients and clinicians, eroding trust, medication adherence, and clinical outcomes” [6].
Emerging data, however, present a promising opportunity to reconcile this gap between patient-reported “symptom flares” and “doctor-measured flares.” In a recent clinical trial of the biologic dapirolizumab, patients reported significant reductions in fatigue and pain— symptoms not previously thought to be biologically driven [7]. “We were never sure whether these symptoms were immunologically determined,” Morand reflects. “Now, the data are making us rethink.” The findings point to immune pathways yet to be uncovered— pathways that may better define what a lupus flare truly is. More accurate methods to define lupus flares can reduce subjectivity in clinical care, increase communication between clinicians and their patients, and lead to better quality research data.
Lupus Challenge 3: Distinguishing Withdrawal from Relapse in Steroid Tapers
Steroid tapering introduces another layer of uncertainty. When symptoms emerge during a taper, are they due to lupus activity or steroid withdrawal? Patients ImYoo interviewed reported that withdrawal symptoms often follow predictable patterns, whereas their lupus flares are more sporadic. Without objective criteria, clinicians may mistake withdrawal for relapse and extend steroid use unnecessarily.
Tapering timelines vary widely. Some patients can taper over weeks, while others require years. The ImYoo team asked Dr. Morand how he thinks about steroid tapers for his patients. Steroid tapering “definitely increases the frequency of flares [both ‘symptom flares’ and ‘doctor measured flares’],” he shared, “which is why so many patients are ‘stuck’ on prednisone.” Morand added, “Biologicals [or biologics] aim to make successful tapers without a flare more likely, and they do, but not completely.”
ImYoo’s Investigation of Steroid Tapering in Lupus
ImYoo applies its multiomic, decentralized research platform to collect actionable molecular data during autoimmune flares. A multiomic approach integrates measurements across multiple biological systems, allowing researchers to observe how different layers of biology interact. These systems are often described using the suffix “-ome,” such as the genome (DNA) or microbiome (gut bacteria), while “-omics” refers to the measurement of those systems.
ImYoo focuses on immune cells, measuring both the transcriptome (RNA) and the proteome (proteins). Proteins reflect the downstream outputs of cellular activity, while RNA captures upstream signals that encode those proteins. Traditional blood tests typically measure protein levels alone. By pairing protein readouts with their upstream RNA signals, ImYoo can place standard biomarkers in a broader biological context and identify immune changes that may otherwise be obscured. Layering these molecular levels, from cellular signaling to functional outputs, provides a more comprehensive view of immune activity during flares.
Beyond molecular detail, ImYoo’s platform also captures situational context at the level of the patient. By enabling participants to collect blood samples at home, the study decentralizes research beyond clinic-based settings. This approach expands access for geographically distant participants and reduces barriers for patients who may be unable to travel during periods of severe symptoms. Autoimmune flares can be unpredictable, spontaneous, and transient. By the time patients reach the clinic, peak immune activity may have already passed. Because flare monitoring depends on timely sampling, clinic-based models can miss the most biologically informative moments.
ImYoo addresses this gap by allowing patients to collect blood samples at the onset of symptoms, capturing immune signals in real time. In previous decentralized studies of inflammatory bowel disease (IBD) and Rheumatoid Arthritis (RA), ImYoo identified patient-specific biomarkers using single-cell RNA sequencing (scRNA-seq) on mailed-in blood samples. Working both internally and with collaborators, ImYoo is now exploring how these molecular insights can inform treatment decisions in IBD.
ImYoo’s expansion to lupus builds on this foundation, with the goal of developing an at-home test to monitor immune changes during steroid tapering. Guided by patient and physician input, the study is designed to identify immune signals that distinguish patient-reported “symptom flares” from clinically measured disease activity— what Dr. Morand had termed “doctor-measured flares.”
The ImYoo Lupus Study is recruiting approximately 200 people with lupus for a 6 month duration. Participants will collect about 6–9 at-home blood samples: up to 6 scheduled monthly samples when feeling stable, plus additional samples collected after steroid reductions and/or worsening symptoms. Participants receive multiple kits upfront so they can collect samples immediately, without rushing to a clinic. Sample collections are self-administered on the upper arm, with a painless and rapid blood collection device that barely penetrates the skin. Remote check-ins capture medication use and symptom ratings such as joint pain and fatigue.
Enrollment is now open! Eligible participants include people with diagnosed systemic lupus erythematosus (SLE) and/or lupus nephritis (LN). Participants must be taking prescribed steroids in accordance with their physician’s instructions at the time of the study start. To join the study, participants must be tapering steroids or planning to taper steroids within approximately 6 months from the study start date. ImYoo patient scientists are eligible to receive monetary compensation, plus a personal immune report. To learn more about the lupus study and join the waitlist, visit ImYoo's Lupus study info page.
Impact for the Lupus Community
ImYoo is working to identify the immunological signals that can help clinicians recognize lupus flares in ways that more accurately reflect patients’ lived experiences—closing the communication gap between patients and physicians and paving a safer path to steroid tapering. This study is generating the data needed to build better tools for flare prediction, treatment guidance, and safer steroid tapering. By placing sample collection in patients’ hands, ImYoo is making transcriptomic technology accessible—and ensuring that patients historically excluded from research are represented.
“With lupus, zip code determines your care,” says Christine Von Raesfeld, recalling the telehealth visits that preceded her hospitalization. Limited diagnostic tools make that reality painfully clear—too often, patients receive appropriate care only once their disease becomes life-threatening. ImYoo aims to change that.
“We want precision medicine to reach patients before patients reach the emergency room,” says Tatyana Dobreva, co-founder and CEO of ImYoo. “Given the severity of lupus nephritis and its prevalence in SLE, we’re hopeful this work will not only improve routine care for lupus patients, but also contribute to the kind of testing that truly saves lives.”
Acknowledgements
Thank you to Christine Von Raesfeld for sharing your lupus story moderating ImYoo’s roundtable session with other lupus autoimmune warriors. Thank you to the lupus autoimmune warriors for sharing your stories and vital intuition. Thank you to Dr. Eric Morand for contributing to the study design of ImYoo’s Lupus Steroid Tapering study.
