“In 1990, at the age of 16, I was diagnosed with systemic lupus. I’ve probably lived with lupus since grade school. Before I was diagnosed, I remember sitting in Driver’s ED class, barely able to wrap my hands around the steering wheel and suffering from a constant cough. Walking up the stairwell to my bedroom each day felt like someone was standing on my chest.”
- Chris Reed, Lupus Advocate, Lawyer, and Lupus Patient
Let’s get right to the point - although lupus disproportionately affects women, lupus is not a women’s disease. Men get lupus, babies assigned as male at birth get lupus, teenage boys, and young men get lupus - and when they do, it can be very severe.
Though lupus or SLE may present similarly in men and women, men tend to suffer with more intense symptoms. It is important to continue to try and understand why this is and validate the unique journey of men living with lupus. This blog will answer some of the most asked questions regarding this topic, and we hope you find it helpful if you have been recently diagnosed or are supporting a male who has.
Is lupus more severe in men than it is in women?
It can be. Several research studies have suggested men often experience a more severe form of the disease. Men tend to present with symptoms that affect multiple systems in the body, many of which include:
Renal (kidney) disease, AKA lupus nephritis
Discoid lupus (skin)
Lupus anticoagulant & Hemolytic Anemia (blood)
There is no exact reason for why symptoms and disease manifestations are more severe. A potential answer might lie with the role of sex hormones—estrogen, commonly associated with women, and androgen, commonly associated with men.
It is thought that estrogen may encourage the development of autoimmune disorders while androgens may offer some protection. If a woman has higher levels of estrogen it may increase disease activity. On the flipside, low levels of androgen in men are thought to connect to the development of the disease in males.
However, there seems to be some good news. Though some symptoms can be more severe, men seem to be less likely to have the lupus overlap diseases Sjögren's syndrome, fibromyalgia, and arthritis. Though they can often experience lupus of the skin, they are less likely than women to develop the malar “butterfly" rash. Additionally, remission rates seem to be similar between the sexes in lupus nephritis (with proper treatment).
What type of disparities do men living with lupus experience compared to women?
Because of the false assumption by most people (including doctors) that men do not get lupus, many men find it harder to get a diagnosis of the disease even when they present with classic symptoms. Some studies have found delay in diagnosis has affected positive outcomes in males living with lupus.
Negative feelings about suffering from a “woman’s disease” have been studied to produce more emotional, economical, social stresses in men that can affect their quality of life. Moreover, The groundbreaking LUMINA (Lupus in Minority Populations: Nature vs. Nurture) study reported that African American male lupus patients are more likely to have organ system involvement, more active disease, and lower levels of social support compared with white lupus patients.
More research is needed to address these disparities, stigmas, and barriers to care and to better guide physicians in their efforts to diagnose and treat lupus in men.
“In 2010 I was diagnosed with systemic lupus. For 3 years I struggled with having it and didn’t share it with anyone. I wasn’t mentally prepared to face any of the things that we as men feel can result in our masculinity being questioned, (how did he end up with a women' disease?) I didn’t want to be seen as weak or less than a man; because one of the biggest misconceptions about lupus is that it only affects women. “
- Dion Langley, Advocate, Father, Professional Drummer
When are males most vulnerable to develop lupus?
Although SLE predominantly affects females in childbearing years, it can occur in males and at any age. Women tend to peak between the ages of 20 – 30. For males, the peak is later, between the ages of 45 and 60 years, however it can occur at any age (as mentioned above).
On a personal note, the first person I met living with lupus was a 14 year old African American young man named Jovan. We were both hospitalized for several weeks together at Children Hospital Los Angeles. It had never occurred to me that lupus was thought of as a “women’s disease” because the first person that introduced me to lupus was him. He also introduced me to Snoop Dogg, but that is another story :)
Does lupus impact 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 parent. However, certain medications used to treat lupus, such as cyclophosphamide (Cytoxan), can affect your testosterone levels and active sperm count, which can negatively impact fertility. Also, glucocorticoid therapy (steroids) appears to reduce sex steroids, primarily androgens, among men treated with corticosteroids long-term.
It is important to talk to your doctor and discuss any concerns about how certain medications may affect you and any side effects you may be experiencing. Be open about any future plans, including the possibility of starting a family.
What are the long-term effects of lupus in males?
Recent studies suggest that disease flares that occur in older men with lupus have higher mortality in one year than women with SLE at the same age. That is why it is very important to be proactive with your health, making your wellness a priority if you are a male living with lupus.
Be your own biggest advocate with your doctors to ensure you get the proper diagnosis and start a treatment plan that is right for you. One of the best ways you can do this is to become knowledgeable of lupus symptoms and track what you're experiencing carefully, so you can share them with your doctor. If you are looking for resources to help you with this, US in LUPUS is a great place to start.
Being a man living with lupus can be incredibly challenging. It is important to have a thorough and honest conversation about how your symptoms impact your everyday life. If you are looking to connect with other men in the lupus community, check out these incredible platforms.
Male Lupus Warriors @malelupuswarriors
Beat Lupus @beatlupus / drum4lupus.org
The Lupus Dream Team @lupusdreamteam (private group)
Chris Reed https://lupus.net
**All resources provided by this blog are for informational purposes only, not to replace the advice of a medical professional. Kelli encourages you to always contact your medical provider with any specific questions or concerns regarding your illness. All intellectual property and content on this site and in this blog is owned by morethanlupus.com. This includes materials protected by copyright, trademark, or patent laws. Copyright, More Than Lupus 2021.