Signs and Symptoms of Lupus in Men

Systemic lupus erythematosus (SLE), or lupus, is an autoimmune disease that can affect the whole body.1 Anyone can get lupus, but signs and symptoms of lupus in men often get overlooked.2 While lupus is more common in women, it is certainly not solely a women’s disease.3

Lupus is a chronic, or life-long condition.1 Many men push through symptoms or are unsure how to talk with others about their symptoms. But putting off the conversation can hinder your health and quality of life and may end up impacting those you care for.3

Learning about lupus and taking steps toward diagnosis and treatment lets you take an active role in your health.3

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How Many Men Get Lupus?

Women are much more likely to get lupus, but men with lupus are not alone. Approximately 1.5 million people in the United States have lupus. About 10% of them, roughly 150,000, are men.4

Diagnosing lupus often takes several years.4 There isn’t one test that can give a definitive answer. Instead, it’s diagnosed based on:5

  • A physical exam
  • Blood and urine tests
  • Family and personal medical history
  • Testing a small skin or kidney tissue sample for signs of lupus
A blood test called an antinuclear antibody (ANA) test may show if your immune system is making specific proteins related to lupus.6 Keep in mind, that a positive ANA test does not necessarily mean you have lupus, and a negative test does not entirely rule it out either.6 The AVISE® CTD lupus test can provide more information to help your provider confirm or rule out a lupus diagnosis.

Men and Risk Factors for Lupus

Family History. Autoimmune diseases are often passed down in families. Having a family member with lupus or another autoimmune disease raises your risk of developing lupus.7

Race and Ethnicity. Lupus is more common in African American, Asian American, Hispanic and Native American men.8

Signs and Symptoms of Lupus in Men

Autoimmune diseases like lupus cause the immune system to attack healthy cells or tissue in the body as it would attack a virus.1

Symptoms are similar in men and women.9 However, some lupus symptoms, such as anemia (too few red blood cells), blood clots, organ damage or seizures, tend to be more severe in men.9,10

Both men and women commonly get “flares” where symptoms become more severe for a while before subsiding again.1

Signs of lupus in men can vary. However, there are common symptoms to watch out for9:

  • A rash on the cheeks and nose shaped like a butterfly
  • Blue or white coloring and numbness in fingers or toes when cold or stressed
  • Chest pain with deep breaths
  • Extreme fatigue
  • Hair loss
  • Joint pain
  • Mouth or nose sores
  • Sensitivity to fluorescent light or sunlight
  • Swelling around the eyes or in hands, feet or joints

Men also tend to have symptoms that affect multiple organs.11 Lupus may also cause inflammation in blood vessels that blocks blood flow.12 Additionally, the risk of developing coronary artery disease is higher in people with lupus.12 Inflammation of the tissue in and around the lungs is also common.12

If the immune system attacks and severely damages the kidney, it can lead to lupus nephritis.13 This prevents the body from maintaining proper fluid levels, regulating hormones and removing waste.13 Lupus nephritis may cause kidney failure if not treated early enough.13

Lupus Treatment and Men

While there is currently no cure for lupus, there are medications to help you have fewer or less severe symptoms.5 Treatment is generally the same in men and women.3 Your provider will work with you to choose the right medications for your symptoms and lifestyle.14

Common medications used to treat lupus include:5, 14

  • BLyS-specific inhibitors to block specific cells related to lupus
  • Corticosteroids to decrease pain, swelling and tenderness
  • Immunosuppressive agents that lower the body’s immune response
  • Nonsteroidal anti-inflammatory drugs (NSAIDs) to address pain and swelling
Lupus doesn’t affect your fertility or ability to have sex, but some medications used to treat lupus may lower sperm count and decrease fertility.3, 10 Be sure to talk with your healthcare provider about any concerns you may have.

Daily Management of Lupus

Living with lupus can be challenging, but there are things you can do to help manage symptoms and flares:15
  • Ask for help with tasks at home or work if needed
  • Avoid too much time in the sun
  • Get enough sleep
  • Go to all medical appointments, even when you’re feeling well

Tracking your symptoms is a great way to learn your triggers.15 Plus, a daily log can help your provider see what treatments work well for you.16

If you aren’t yet diagnosed, having a list of your symptoms may help you and your provider find answers and reach a diagnosis.16

Lupus and Mental Health

Stress can worsen symptoms of lupus.17 Taking care of your mental health and getting proper support are essential to living well with the condition.15

Mindfulness techniques or breathing exercises can help manage the stress and pain that often come with lupus.18 Scheduling time for relaxing activities like listening to music or taking a walk can also decrease stress.17

Try talking with your spouse, a close friend or a therapist about what you’re going through. Having someone to talk with will help keep stress from building up.16

Connecting with other men with lupus is another good way to deal with the loneliness, questions and stress common with an autoimmune disease. An in-person or online support group is often an excellent place to find others dealing with similar experiences.15

Next Steps

Don’t give up. Getting a lupus diagnosis can be particularly challenging for men due to the myth of lupus being a women’s condition.2 Look for a provider who specializes in lupus.5

It can be difficult to know what to do or how to talk with your provider about lupus. But being prepared for your appointment will make it easier.16

Track your symptoms using our lupus symptoms checklist, and bring it with you to your next appointment to start the conversation.
Symptoms Checklist
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Last reviewed by an Exagen medical professional on 09/02/2022.

References:

  1. Centers for Disease Control and Prevention. Lupus. CDC.gov. Reviewed February 17, 2022. https://www.cdc.gov/chronicdisease/resources/publications/factsheets/lupus.htm. Accessed July 12, 2022.
  2. Lupus Foundation of America. What Role Do Sex and Gender Play in Lupus? Lupus.org. Updated October 26, 2021. https://www.lupus.org/resources/what-role-do-sex-and-gender-play-in-lupus. Accessed July 12, 2022.
  3. Lupus Foundation of America. Does Lupus Occur in Men? Lupus.org. Updated June 1, 2020. https://www.lupus.org/resources/does-lupus-occur-in-men. Accessed July 12, 2022.
  4. Lupus Foundation of America. Lupus Facts and Statistics. Lupus.org. Updated October 6, 2016. https://www.lupus.org/resources/lupus-facts-and-statistics. Accessed July 12, 2022.
  5. Centers for Disease Control and Prevention. Diagnosing and Treating Lupus. CDC.gov. Reviewed June 27, 2022. https://www.cdc.gov/lupus/basics/diagnosing.htm. Accessed July 12, 2022.
  6. Lupus Foundation of America. Lab Tests for Lupus. Lupus.org. Reviewed July 13, 2013. https://www.lupus.org/resources/lab-tests-for-lupus. Accessed July 12, 2022.
  7. Lupus Foundation of America. Your Genes and Lupus: The Basics. Lupus.org. Reviewed July 18, 2013. https://www.lupus.org/resources/your-genes-and-lupus. Accessed July 12, 2022.
  8. National Library of Medicine. Lupus. MedlinePlus.gov. https://medlineplus.gov/lupus.html. Accessed July 12, 2022.
  9. Lupus Foundation of America. Lupus Symptoms. Lupus.org. Updated April 7, 2020. https://www.lupus.org/resources/common-symptoms-of-lupus. Accessed July 12, 2022.