Lupus Symptoms in Men: What to Look For

Lupus symptoms in men (those assigned male at birth, or AMAB) are sometimes different from those commonly experienced by women (those assigned female at birth, or AFAB).

While nearly 90% of people with lupus are AFAB, males can get lupus and should know the symptoms to look for. People transitioning from one sex to another may see a change in their risk of lupus, as well.

This article looks at the symptoms of lupus in males, why they have lupus less often, lupus risk during sex transition, emotional challenges faced by males with lupus, and sex-based differences in diagnosis and disease outcome.

Lupus Symptoms in Men

Males can get any of the common lupus symptoms, but evidence suggests certain symptoms of lupus are more common in those AMAB than in other people with the disease.

A number of studies have looked at sex-based lupus characteristics. The results are varied, but some differences did come up.

Lupus symptoms that appear to be more common in people AMAB include:

• Renal (kidney) disease
• Lupus anticoagulant (can promote abnormal blood clotting)
• Seizures
• Heart problems
• Inflammation in the lining of the heart (pericarditis), lungs (pleurisy), and abdomen (peritonitis)
• Swelling of the glands (adenopathy)
• Enlarged spleen (splenomegaly)
• Hemolytic anemia (from the destruction of red blood cells)
• Lymphopenia (low white blood cell count)
• Thrombocytopenia (low platelet count)
• Fevers
• Unintended weight loss

Older research suggests a type of lupus called discoid lupus is more common in males. Discoid lupus causes reddish, scaly skin.

Lupus nephritis, a type that affects the kidneys, may be more severe in men.

Common Lupus Symptoms

Some common lupus symptoms may accompany those that are more common in males. They include:

• Severe fatigue
• Painful, swollen joints
• Butterfly-shaped rash across the cheeks and nose (malar rash)
• Other rashes, especially after sun exposure
• Hair loss (temporary)
• Sun or light sensitivity
• Mouth sores
• Memory problems
• Swelling in the face, hands, and feet
• Headaches

Why Is Lupus Less Common in Men?

More questions than answers exist when it comes to discussing lupus and sex-based differences, including why it's so much less common in males. However, researchers have some ideas about what could be causing the differences.

A potential answer might be the role of sex hormones:

• Estrogen and progesterone, the "female" hormones
• Testosterone, the main "male" hormone

People of all sexes have both female and male hormones, just in different amounts.

Females with lupus have abnormally high estrogen and low progesterone levels. Males with lupus may have high estrogen and lower testosterone levels than is considered normal for their age.

Researchers also suspect sex-based differences in immune function and genetics play a role in who gets lupus more often. Pregnancy changes the body in ways that may increase the likelihood of autoimmune disease, as well.

Lupus in Transgender or Non-Binary People

Research on lupus in transgender or non-binary people is in its earliest stages. However, the role of sex hormones in people who are transitioning has gained some attention.

A 2022 review looked at case studies involving autoimmune and autoinflammatory rheumatic diseases in trans people on hormone therapy. Conditions included:

• Lupus
• Rheumatoid arthritis
• Systemic sclerosis
• Ankylosing spondylitis
• Anti-synthetase syndrome

Most of the cases were in trans women and occurred after they started estrogen therapy. In some cases, stopping hormone therapy helped alleviate symptoms and disease activity. This all seems to bolster the theory that sex hormones play a major role in these diseases.

One trans man (AFAB) who had lupus before transitioning had a marked improvement in symptoms after starting testosterone therapy.

Again, research is just beginning and there's much to learn about the medical effects of hormone therapy for transition.

Emotional Challenges

All chronic disease can cause emotional difficulties, such as depression. Males with lupus may wrestle with extra problems because of societal expectations.

Being unable to perform physical labor and perhaps being unable to hold a job are all harder, socially, for people who present as men. Having a "women's disease" can add to that burden.

If you're struggling to cope with your illness, talk to your healthcare provider and look for support groups that include or are exclusively for males with lupus, autoimmunity, or chronic pain. Online groups may give you a better chance of finding groups with other males.

Differences in Diagnosis and Outcome

Because lupus is sometimes thought of as a "women's disease," healthcare providers may not consider that diagnosis when you go in with symptoms. This is especially true if your symptoms don't match what they're used to seeing with lupus.

The mean age for diagnosis in people AFAB is 30. For people AMAB, it's 40. It's not yet clear how much of that gap is accounted for by delayed diagnosis.

An early lupus diagnosis can lead to a better outcome, so it's in your best interest to push for diagnostic tests if you think you could have lupus. If your provider is reluctant to test or isn't comfortable diagnosing you, consider getting a second opinion.

Lupus is rarely a simple, straightforward diagnosis. It can take a few rounds of testing to know for sure whether you have it. Expect it to take a while and try not to get discouraged. Each test brings you closer to knowing what's wrong and how to treat it.

Summary

Males get lupus less often than females and may have different symptoms, as well. For example, males with lupus might be more likely to have a discoid rash or kidney problems.

The reasons for the sex-based disparity is thought to be sex hormones, differences in the immune system, and genetics. People transitioning from one sex to another with hormone therapy may change their susceptibility to lupus.

Males with lupus may face an added stigma over having a debilitating illness in general and also for having a "women's disease." Finding support from other males like you may help.

If you suspect you have lupus, ask your healthcare provider to test you. Early diagnosis leads to better outcomes, but some providers fail to think of lupus as a possibility when their patient is male.