Lupus & Hormones: Understanding the Connection

By Autumn Austin
Executive Director, Colors of Lupus

When most people think about lupus, they think about joint pain, fatigue, rashes, or the “butterfly rash.” However, one of the most overlooked aspects of living with lupus is the role that hormones play in the disease.

Hormones influence nearly every system in our bodies—from our immune system and energy levels to our mood, sleep, and reproductive health. For people living with lupus, hormonal changes can sometimes trigger flares, worsen symptoms, or create new challenges throughout different stages of life.

The relationship between lupus and hormones is complex, but understanding it can help you better recognize changes in your body and have more informed conversations with your healthcare team.

Why Are Women More Likely to Develop Lupus?

Approximately 9 out of every 10 people diagnosed with lupus are women, with the majority receiving their diagnosis during their childbearing years (ages 15-44). This has led researchers to study the role of estrogen and other sex hormones in lupus.

While hormones alone do not cause lupus, estrogen appears to influence how the immune system functions. In people who are genetically predisposed to lupus, hormonal changes may contribute to increased immune activity, potentially increasing the likelihood of disease flares.

Researchers continue to study this relationship, but one thing is clear: lupus is influenced by a combination of genetics, environmental factors, immune dysfunction, and hormonal changes.

Hormonal Life Changes That May Affect Lupus

Menstrual Cycles

Many women report increased fatigue, joint pain, headaches, or lupus symptoms just before or during their menstrual cycle. Keeping a symptom journal can help identify patterns that may be related to hormonal fluctuations.

If you notice a consistent increase in symptoms each month, discuss these patterns with your rheumatologist and gynecologist.

Pregnancy

Pregnancy is possible for many people living with lupus, but it requires careful planning.

The healthiest pregnancies typically occur when lupus has been well-controlled for at least six months before conception. High-risk obstetricians (Maternal-Fetal Medicine specialists) often work alongside rheumatologists to closely monitor both mother and baby throughout pregnancy.

Certain lupus medications are safe during pregnancy, while others must be discontinued beforehand. Never stop or change medications without consulting your healthcare provider.

Birth Control

Not every birth control option is appropriate for every person living with lupus.

Your provider will consider several factors, including:

• Whether your lupus is active or stable
• Your history of blood clots
• Whether you have antiphospholipid antibodies (APS)
• Your cardiovascular risk factors
• Current medications

For some patients, estrogen-containing contraceptives may not be recommended, while others may safely use them under medical supervision.

Perimenopause & Menopause

As estrogen levels naturally decline, some women notice changes in lupus symptoms. Others may experience symptoms related to menopause that overlap with lupus, including:

• Fatigue
• Brain fog
• Joint stiffness
• Sleep disturbances
• Mood changes
• Hot flashes

Because these symptoms can look very similar, it can sometimes be difficult to determine whether someone is experiencing a lupus flare, menopause, or both.

Lupus Can Affect More Than Reproductive Hormones

Living with lupus can also impact hormones involved in stress, metabolism, and bone health.

Long-term corticosteroid use, such as prednisone, may increase the risk of:

• Osteoporosis
• Weight changes
• Elevated blood sugar
• Mood changes
• Changes in adrenal gland function

These potential side effects are one reason healthcare providers aim to use the lowest effective steroid dose whenever possible.

Hormones and Mental Health

Hormonal fluctuations and chronic illness can both affect emotional well-being.

People living with lupus may experience:

• Anxiety
• Depression
• Mood swings
• Irritability
• Difficulty concentrating
• Increased stress during hormonal transitions

Seeking support through counseling, support groups, trusted family members, or organizations like Colors of Lupus is an important part of whole-person care. Caring for your mental health is just as important as managing your physical symptoms.

Men Have Hormones Too

Although lupus is more common in women, men living with lupus also experience hormonal influences.

Researchers continue to study whether testosterone and other hormones affect disease activity differently in men. Men may also face unique challenges with delayed diagnosis because lupus is often mistakenly viewed as a “women’s disease.”

Every person living with lupus deserves timely diagnosis, appropriate treatment, and compassionate care.

Tips for Managing Hormonal Changes with Lupus

While hormonal changes cannot always be prevented, you can take steps to better manage their effects:

• Track your menstrual cycle alongside lupus symptoms.
• Keep a journal of fatigue, pain, headaches, and mood changes.
• Stay consistent with prescribed medications.
• Prioritize quality sleep and stress management.
• Exercise as tolerated and approved by your healthcare provider.
• Eat a balanced, anti-inflammatory diet.
• Keep regular appointments with both your rheumatologist and gynecologist.
• Ask questions before starting hormone therapy or changing birth control methods.

Final Thoughts

Living with lupus means learning to understand your body’s unique patterns. Hormones are just one piece of the puzzle—but they are an important one.

By recognizing how hormonal changes may affect your lupus, you can better prepare for different stages of life, advocate for yourself, and work with your healthcare team to make informed decisions.