Lupus can develop in anyone, male or female, of any age, including children, teenagers, and adults.
A lot of misinformation exists about lupus, and men with the disease may discover that people are often surprised to learn that they have it because of the incorrect belief that lupus only occurs in women.
Research suggests 1 in 10 of those with lupus are male. Men develop the same typical clinical manifestations of lupus as women, yet certain key symptoms may be more pronounced in men than in women. For example, when men with lupus have kidney involvement it tends to be more severe..
What are the symptoms of lupus in men?
Some studies show that men with lupus commonly experience:
- Low blood count
- Cardiovascular (heart and blood vessels) complications
- Unexplained fever and weight loss
- Antiphospholipid antibodies (which can increase the risk of blood clots)
- Renal (kidney) disease
- Serositis (inflammation of the serous membrane that often causes chest pain when taking a deep breath)
Other common signs and symptoms of lupus can include:
- Extreme fatigue
- Pain or swelling in the joints
- Swelling in the hands, feet, or around the eye
Experts don’t know what causes lupus or why it affects more women than men, but it and other autoimmune diseases do run in families. Certain ethnic groups — including African American, Asian American, Hispanics/Latino, and Pacific American — are at higher risk for developing lupus than the rest of the population.
Treatment for lupus in men is nearly identical to treatment in women. However, certain medications used to treat lupus, such as cyclophosphamide (Cytoxan®), can affect sperm counts. Before you begin taking any medications, talk with your doctor about how they may affect you.
We encourage you to reach out to other men who, like you, are learning to live and cope with lupus. You can connect with other men with lupus through the Lupus Fighters of America support groups.
Does having lupus impact my testosterone levels, ability to perform sexually, or potential to become a father?
Having lupus doesn’t diminish your testosterone levels, ability to perform sexually, or potential to become a father. However, certain medications used to treat lupus, such as cyclophosphamide (Cytoxan), can affect your testosterone levels and active sperm count, which can impact fertility in a negative way.
It is important to talk to your health care team early on and share your concerns about how certain medications may affect you.
Is lupus more severe in men than it is in women?
Research suggests that men who have lupus experience a more severe form of the disease. The scientific and research community does not have a shared and agreed-upon answer as to why this appears to be the case. More research is needed to answer the many questions around lupus and guide physicians in their efforts to diagnose and treat lupus in both men and women.
What are the disparities in lupus diagnosis and treatment among men in comparison to women?
Because of the false assumption by many that men do not get lupus, some men may find it harder to get a diagnosis of the disease despite presenting symptoms. Some studies have found that men are often older than women at the time of diagnosis.
More research is needed in order to best answer this question and guide physicians in their efforts to diagnose and treat lupus in both men and women.
I am struggling to get a lupus diagnosis, but I present many of the symptoms. What should I do?
Diagnosing lupus is a challenge since there is no one single test that can give doctors a “yes” or “no” answer. Sometimes it can take months — or even years — to gather the right information for a diagnosis. Symptoms often change and come and go over time, making it hard to keep track of what is happening in your body. Men may have an even harder time getting a lupus diagnosis because of the false belief that only women can get the disease.
It is very important to be your own biggest advocate with your doctors to ensure you get the proper diagnosis and start a treatment plan. One of the best ways you can do that is to become knowledgeable of lupus symptoms and track what you’re experiencing carefully, so you can share them with your doctor.
How can I explain my lupus diagnosis and symptoms to other people?
Explaining lupus is difficult for most people with the disease, given its often invisible symptoms. But it can be especially difficult for men because of the stigma that only women get lupus.
Having a thorough and honest conversation about the facts on lupus and how your symptoms impact your everyday life can help your loved ones, coworkers, and anyone else you feel need to know better understand lupus and the kind of care you need.
What should I do if I’m struggling to maintain my job due to my lupus symptoms?
Work can be very difficult to maintain with lupus symptoms, and that doesn’t just impact your financial status — it can impact your identity and self-image. Many people are able to continue working after a lupus diagnosis, but adjustments may need to be made to accommodate a new normal. That could include flexible hours, telework, and job-sharing. Learn more about working with lupus, workplace FAQs, and workplace accommodations.
If you are unable to work due to lupus, you may qualify to enroll in Social Security Disability, which pays benefits to those who can’t work due to a medical condition.
What can I do if I often feel depressed due to my lupus diagnosis and symptoms?
Lupus can bring about many challenges — there is no shame in being overwhelmed with a variety of negative emotions about the uncertainty of what each day will bring. It’s also normal to grieve for the loss of the life you had before lupus.
However, there is a difference between temporary negative feelings and negative feelings that become overwhelming and long-lasting, which may signal a serious but treatable illness called clinical depression.
I feel alone in my lupus diagnosis. What can I do to combat that feeling?
Though it may feel like it, you are not alone in your diagnosis. There are many men navigating lupus who have experiences similar to yours. And even though your loved ones may not completely understand, they can still be a support system for you.
What are my options if there are no in-person support groups in my area?
If there are no support groups in your immediate area, Lupus Fighters Unite is a great way to build an online community of other people — including other men — who are navigating life with lupus. People who join can ask questions, reply to posts by other members, and read about others’ experience in a safe and comforting community.