Understanding the Menopausal Transition in SLE: Symptom Burden and Therapeutic Implications

Women who have been living with systemic lupus erythematosus (SLE) for many years often face unique challenges as they age. Lupus itself can cause ongoing inflammation and organ damage over time. As women enter menopause, hormonal changes can add another layer of symptoms, including fatigue, hot flashes, joint pain, sleep problems, mood changes, and difficulty concentrating. Many of these symptoms overlap with lupus symptoms. Because of this, it can be difficult to determine whether symptoms are due to lupus activity or menopause. This confusion may lead to increasing lupus medications unnecessarily or to missing opportunities to treat menopause symptoms appropriately. It is not yet known whether women with lupus experience more severe menopause symptoms than women without lupus or women with other autoimmune diseases. In addition, although professional guidelines support the use of hormone therapy (HT) for some women with stable lupus, it is unclear how often this treatment is used in real-world practice. Dr. Young’s long-term goal is to improve care for women aging with lupus by focusing on issues that have not received enough attention, especially menopause, hormone therapy, and age-related health concerns.

This project will:

1. Measure menopause symptoms in women with lupus.

Dr. Young will compare symptom severity, such as hot flashes, fatigue, sleep problems, and mood symptoms, in women with lupus to women without rheumatic disease and to women with other autoimmune conditions. This will help determine whether women with lupus experience a higher symptom burden.

2. Study how menopause treatments are being prescribed.

The research team will examine how often hormone therapy and other menopause treatments are prescribed to women with lupus across the United States and whether prescribing patterns have changed over time as medical guidelines have evolved. The team will also evaluate factors such as age, race, location, and other health conditions to better understand who is receiving treatment and who is not.

3. Listen to women’s lived experiences.

The research team will conduct interviews with women with lupus who are going through menopause, as well as those who have already transitioned through it. These interviews will explore how symptoms affect daily life, how treatment decisions are made, and how women experience communication with their healthcare providers. The goal is to learn directly from patients about what support is missing and how care can be improved.

Why This Matters to Patients with Lupus 

There is currently very little research to guide doctors and patients in managing menopause in women with lupus. This study will provide important information about symptom burden, treatment patterns, and patient experiences. Ultimately, this work aims to help women with lupus receive more personalized and thoughtful care during midlife and beyond, ensuring that menopause symptoms are recognized, appropriately treated, and not simply attributed to lupus alone.

Women aging with longstanding systemic lupus erythematosus (SLE) face cumulative, often irreversible damage from chronic disease activity, disease duration, and hormonal changes. The menopausal transition is a vulnerable period when overlapping symptoms (e.g., fatigue, vasomotor instability, arthralgia, and cognitive dysfunction) may be mistaken for SLE flares or overlooked. This diagnostic uncertainty can result in unnecessary immunosuppression or missed menopause-specific treatments. Although guidelines support hormone therapy (HT) for selected women with SLE, real-world use is poorly understood. Distinguishing SLE from menopause manifestations is essential to improve symptom attribution, guide treatment, and integrate patient perspectives in care.

This project aims to improve menopause-related care for women with SLE by characterizing symptom burden, prescribing patterns, and patient experiences during menopause. We hypothesize that women with SLE have more severe, underrecognized menopausal symptoms and lower hormone therapy (HT) use than women without rheumatic disease or with other immune-mediated inflammatory diseases (IMIDs). To test this, we will integrate data from three sources: (1) a prospective SLE cohort with clinical and patient-reported outcomes, (2) the Mayo Clinic Menopause Cohorts, and (3) the OptumLabs Data Warehouse, a national claims and EHR-linked dataset. Using these, we will pursue three specific aims:

1.) Quantify the severity of menopausal symptoms in women with SLE versus women with other IMIDs and women without IMIDs.

2.) Determine the time trends in prescribing menopausal therapies in women with SLE in relation to the changing menopause therapies guidelines.

3.) Explore lived experiences of women with SLE during menopause using qualitative interviews.

This work will improve understanding of how women with SLE experience menopause and guide more accurate, individualized care that addresses both hormonal and autoimmune symptoms.