Men and Lupus | Symptoms, Mental Health & Real Stories | Lupus Canada
Men and Lupus: Understanding the Male Experience
Lupus is not just a women’s disease
Although lupus is most often associated with women, men can and do develop the disease. For many men, lupus presents differently, sometimes more severely and can be harder to diagnose.
Men living with lupus may face delays in diagnosis, more aggressive symptoms, and barriers to support due to persistent stigma and limited awareness.
While Canadian data is limited, research from the United States suggests that approximately 1 in 10 people with lupus are male. Diagnosis can occur at any age, including childhood and later adulthood, but lupus in men is most commonly seen in younger and older age groups. This highlights the need for increased recognition, research, and tailored support for men living with lupus in Canada.
Table of Contents
Quick Facts: Lupus in Men
- Lupus is 9 times more common in women, but men tend to experience more severe symptoms.
- 20–40% of new adult lupus diagnoses occur in men.
- Renal flare-ups and poor kidney outcomes are more common in male patients.
- Symptoms may appear more atypically, with blood, kidney, or neurological signs showing before joint or skin symptoms.
- Male-specific factors include smoking, alcohol use, lupus anticoagulant positivity, and Caucasian ethnicity.
- Men report lower quality of life (QOL), often due to social stigma and limited gender-specific resources.
Symptoms: What Men Should Watch For
While many lupus symptoms overlap between sexes, men may experience:
- Pleurisy (lung inflammation)
- Skin rashes
- Fatigue
- Joint pain
- Raynaud’s phenomenon and vasculitis (inflammation of the blood vessels)
- Peripheral neuropathy (nerve inflammation)
- Seizures and cardiac issues
- Kidney involvement (lupus nephritis)
- Mouth ulcers (often less painful than in women)
- Less joint inflammation, but potentially more organ damage
- Discoid lupus is more common in men; malar rash is more common in women
More About Discoid Lupus Erythematosus (DLE)
DLE is a non-systemic form of lupus that causes coin-shaped, scaly lesions on areas like the scalp, cheeks, and nose. While often painless, some cases can be uncomfortable. People with DLE are typically photosensitive and may need to avoid sun exposure to prevent flares or scarring.
More About Drug-Induced Lupus (DILE)
DILE is triggered by certain medications—especially those prescribed for heart disease or high blood pressure. It causes symptoms like joint pain, muscle aches, fever, arthritis, and inflammation in the heart or lungs. These symptoms often improve once the medication is discontinued, although resolution can take weeks or months.
DILE is more commonly diagnosed in men, likely because they are more frequently prescribed the medications associated with it.
More About Lupus Nephritis in Men
Renal involvement is more common and more severe in men with lupus. Those with lupus nephritis (LN) face a higher risk of kidney damage, more frequent flare-ups, and worse renal outcomes compared to female patients.
Immunosuppressive treatment is often required to manage kidney involvement, and early detection is critical in preserving long-term organ function.
Why Do Some Men Get Lupus?
Lupus is a complex autoimmune condition caused by genetic, hormonal, and environmental factors. Research shows that men with lupus may have lower testosterone activity at the cellular level, possibly increasing autoimmunity risk. Unlike previous theories, there is no elevated estrogen in men with lupus.
Animal studies and human data suggest stress, infections, or medications may also trigger lupus flares.
Diagnosis Challenges
Because lupus is often perceived as a “women’s disease,” men may face delays in diagnosis.
The American College of Rheumatology (ACR) has 11 criteria used for lupus diagnosis, the presence of at least four of the criteria indicates a diagnosis of SLE by this standard.
Men may not meet visible signs like facial rash early on, making symptoms harder to detect.
Organ damage can occur rapidly if lupus is not diagnosed and treated early.
Treatment for Men with Lupus
There is no cure for lupus, but it can be managed. Men and women typically receive similar treatments based on organ involvement and symptom severity. Common treatments include:
- Anti-inflammatories and corticosteroids
- Antimalarials (e.g., hydroxychloroquine)
- Immunosuppressives
- Biologics
However, men may face added concerns:
- Long-term glucocorticoid use can impact fertility
- Glucocorticoids may also contribute to reduced bone mineral density (BMD) by impairing calcium absorption, decreasing bone formation, and accelerating bone loss
- Routine bone health monitoring may be especially important for men with lupus who are on long-term steroid therapy
Men with lupus may be at greater risk of bone loss in the spine, while women more commonly experience bone loss in the hips.
Learn about Treatment Options
Hormones, Fertility, and Lupus
Hormonal differences may help explain why lupus is more common in women. While young men with lupus typically have normal testosterone levels, lower testosterone activity at the cellular level may increase autoimmune risk. There is no increase of estrogen (a female hormone) in men with lupus. Researchers are also studying androgens, which have immunosuppressive properties and may play a protective role.
Lupus itself and medications like glucocorticoids can affect male fertility by disrupting hormone production and reducing sperm quality. However, most men with lupus can still father children.
Lupus is not a genetically inherited disease, but familial autoimmune patterns may exist. The risk of passing lupus to a child is estimated at about 1 to 5 percent (Lupus Foundation of America).
If you are considering family planning, speak with your healthcare provider about fertility preservation and medication options.
Five major symptoms of depression
- Low self-worth
- Disrupted sleep
- Low energy
- Hopelessness
- Changes in appetite
Five major symptoms of anxiety
- Feeling panicked or uneasy
- Trouble sleeping
- Lack of concentration
- Inability to relax
- Trouble breathing
Is There A Correlation Between Lupus And Mental Health?
Yes, there is a correlation between lupus and mental health. According to the Research Lupus Alliance, research shows 25% of lupus patients experience major depression and 37% have major anxiety. Those who have chronic illnesses tend to experience anxiety and depression at a higher rate, according to the National Institute of Mental Health (NIMH). Anxiety and depression can aggravate lupus, as stress can cause flare-ups. Similarly, a study found depression is among the most common neuropsychiatric manifestations of lupus. Some patients with lupus experienced depression and anxiety due to lupus, whereas others had experienced mental health issues before. A 2022 study found a link between cognitive dysfunction and depression, which are influenced by each other. Impaired cognitive ability can contribute to depression, and depression frequently hinders cognitive functions.
Managing Lupus And Mental Health
It is important to prioritize your mental health while having lupus, as overwhelming feelings of stress and anxiety can exacerbate your symptoms or cause a flare-up. There are many ways to manage your mental health, such as seeking therapy, regular exercise, meditation and support groups. Antidepressants can also help to ease the symptoms of depression and anxiety.
If you know someone who is in a crisis, please click here.
For more information on mental health resources, please click here.
Prosper Laguerre
Prosper Laguerre, known as DJ Prosper, is a passionate advocate for lupus awareness. Living in Canada, he uses his platform to challenge misconceptions about lupus and inspire others with his journey. Despite the challenges of living with this chronic illness, Prosper remains resilient, sharing his story to encourage others to persevere and fight against the stigma associated with lupus.
Speaking Out to Break the Silence
During Men’s Health Month, we invited four men, Kerry Johnson, Isaac Hall, Miguel Jones, and Carlos Herrera, to share their experiences of living with lupus. Together, they opened up about stigma, misdiagnosis, emotional health, and the power of speaking out.
More Resources
If you or someone you love is living with lupus and struggling with mental health, you are not alone. Below are resources tailored to men’s mental and emotional well-being:
Canadian Men’s Health Month | Canadian Men’s Health Foundation
References:
Ambrose, N. L., Kearns, G., & Mohammad, A. (2009). Male lupus: A diagnosis often delayed. Irish Journal of Medical Science, 180(1), 279–282. https://doi.org/10.1007/s11845-009-0438-x
Resende, A., Titan, S., Barros, R., & Woronik, V. (2011). Worse renal outcome of lupus nephritis in male patients. Lupus, 20(6), 561–567. https://doi.org/10.1177/0961203310392422
Thomas, R., & Jawad, A. S. (2022). Systemic lupus erythematosus: Rarer in men but more severe. Trends in Urology & Men’s Health, 13(5), 11–14. https://doi.org/10.1002/tre.876
Mok, C. C., et al. (2008). Bone mineral density in men with systemic lupus erythematosus. Bone, 43(2), 327–331. https://doi.org/10.1016/j.bone.2008.04.003
Jolly, M., et al. (2019). Gender differences in quality of life in lupus patients. Arthritis Care & Research, 71(12), 1647–1652. https://doi.org/10.1002/acr.23588
Male systemic lupus erythematosus, an overlooked diagnosis: https://pmc.ncbi.nlm.nih.gov/articles/PMC3981404/#:~:text=Systemic%20lupus%20erythematosus%20(SLE)%20is,only%20one%20is%20a%20man
Chalhoub NE, Luggen ME. Depression-, Pain-, and Health-Related Quality of Life in Patients with Systemic Lupus Erythematosus. Int J Rheumatol. 2022 May 5;2022:6290736. doi: 10.1155/2022/6290736. PMID: 35572065; PMCID: PMC9098355.
Lew D, Huang X, Kellahan SR, Xian H, Eisen S, Kim AHJ. Anxiety Symptoms Among Patients With Systemic Lupus Erythematosus Persist Over Time and Are Independent of SLE Disease Activity. ACR Open Rheumatol. 2022 May;4(5):432-440. doi: 10.1002/acr2.11417. Epub 2022 Feb 22. PMID: 35191213; PMCID: PMC9096521.