Like many autoimmune diseases, most types of lupus (including systemic lupus erythematosus, or SLE) are more common in women, according to a review article in the journal Frontiers in Immunology. However, any person of any age can develop lupus.
According to the Lupus Foundation of America, some researchers estimate that about 10 percent of lupus cases affect males. A study in the journal Rheumatology reported that the number is closer to 17 percent. They noted that, when comparing people in the same age groups, women experience lupus at higher rates than men across the board, especially during reproductive years.
Although many aspects of the disease are similar among all people, some may be more likely to receive a misdiagnosis or experience certain symptoms of lupus, as well as possible complications. Here’s more background on what men might expect when living with lupus.
Studies suggest that many men with lupus are diagnosed at an older age than women, according to the Lupus Foundation of America. Although women are typically diagnosed from their 20s through their 60s, men are most likely to receive a diagnosis of lupus from age 40 to 70, according to the Rheumatology study.
This disparity could result from actual differences in who gets lupus or in health care providers struggling to identify lupus in younger men. The cause of lupus remains a bit of a mystery to health care providers, but genetic and hormonal characteristics may increase the chances of women getting the disease, the study authors said.
Since there’s no single specific test to diagnose lupus, pinpointing the diagnosis can require some educated guesswork from your health care team. It’s important for all people to advocate for thorough testing and follow-up to ensure that serious health concerns aren’t brushed aside because a person doesn’t fit the usual profile of someone with lupus. The earlier you receive the right diagnosis, the sooner you can begin treatments to feel better.
Symptoms of lupus vary from person to person. Lupus can cause organ damage throughout the body, affecting different areas at different times.
Nonetheless, men may experience forms of lupus that affect certain parts of the body more severely, according to the Lupus Foundation of America. For instance, men with lupus have higher rates of cardiovascular disease, including high blood pressure, which leads to an increased risk of lupus nephritis (kidney disease).
According to researchers, males may also be more prone to:
However, men with lupus are slightly less likely to develop arthritis and leukopenia (reduced white blood cells) than women, per findings published in the International Journal of Rheumatic Diseases.
Men on MyLupusTeam have shared their stories of dealing with lupus-related heart and renal issues. One member wrote, “My cardiologist said I should get a defibrillator right away. Apparently, lupus or myositis is causing real problems — I think more from myositis, as I have had a lot of issues with chest, shoulder, and neck muscles.”
Another said, “I experienced the butterfly-shaped rash and skin lesions, but my biggest issue is the kidney problems. I was placed on dialysis six months after I was married. Thankfully, that only lasted for six weeks. Unfortunately, 23 years later, they failed again, for good this time after four years of dialysis. I received a kidney transplant from a younger sibling, which is still functioning. Before the transplant, they removed a cancerous left kidney.”
Being aware of the dangers of lupus can help you take precautions at home before an emergency strikes. Self-monitoring blood pressure is especially important, even if you haven’t had high blood pressure in the past.
All people diagnosed with lupus generally receive the same treatments to manage the symptoms and control the disease. Treatment is tailored to your immediate needs with your long-term health in mind, taking into consideration your individual health problems and risk factors.
Because many lupus treatments have been studied primarily in women, doctors can’t always predict how well men will respond to therapies, noted the authors of a study in the journal Clinical and Developmental Immunology. Additionally, there are some concerns about how lupus medications affect fertility. For example, cyclophosphamide (Cytoxan) is known to reduce sperm counts. Therefore, it’s important to discuss lupus treatments and family planning with your health care provider to weigh your best options.
Taking the time to talk to your provider about other aspects of your life (including relationships and lifestyle) can help them get to know you better so they can inform you about how your treatments might affect future plans.
Anyone can struggle with the social aspects of living with a chronic disease like lupus. A few men on MyLupusTeam have discussed feeling judged by relatives or worrying about being perceived as lazy. The fatigue from lupus sometimes keeps them from staying on top of household chores or working as much as they’d like.
It’s important to listen to your body and rest when needed. Everyone has good days and bad days, but knowing when to take it slow can help prevent more severe lupus flare-ups.
One member of MyLupusTeam shared a strategy for coping with this chronic disease: “I needed to incorporate something in my life to occupy my mind, so I would not dwell on the illness. I took up woodworking as an escape. The hobby turned into a lifesaver, and I became very skilled at the craft. I have been doing woodworking for 40 years whenever the disease permitted.”
Other people may not understand how lupus affects you physically and emotionally. Sharing information with people who want to know can help you feel understood. If the people in your life aren’t compassionate about your struggles, connecting with others in an online support group can help provide that deeper sense of connection, so you feel less alone on the journey.
MyLupusTeam is the social network for people with lupus and their loved ones. On MyLupusTeam, over 216,000 people with lupus come together to ask questions, give advice, and share their stories.
Did you struggle to get the proper diagnosis because you are not a typical person with lupus? How has lupus affected you physically, socially, and emotionally? Post your thoughts in the comments below, or start a conversation by sharing on MyLupusTeam.