Lupus & You Q&A: The Male Journey
Lupus & You is a free educational series where people with lupus and their family and friends can learn more about the latest in lupus research and managing the disease.
Our recent webinar, Lupus & You: The Male Journey, challenged the misconception that lupus only affects women. Our patient speakers shared their unique experiences as men living with lupus and a caregiver talked about her experience as a care partner for her husband. Additionally, two physician presenters provided insight into genetic factors contributing to lupus in men and advocating for themselves, particularly for their kidney health, which is of specific concern to men who experience more severe kidney complications. If you missed the event, watch the video below and read on for a recap.
Below are some of the most commonly asked questions from the event, with insights from our Health Education Specialists and expert webinar speakers.
What are the most common symptoms in men lupus patients?
While lupus affects everyone differently, men with lupus are more likely than women to experience kidney complications, heart, lung, and blood problems, antiphospholipid antibody syndrome (which can cause blood clots) and chest pain that occurs when taking deep breaths (serositis).
Are men at higher risk for developing lupus nephritis?
Lupus nephritis, which occurs when lupus affects the kidneys, is more common in women but it has a more severe presentation in men.
Are lupus symptoms in men more severe than in women?
Research suggests that men do experience a more severe form of the disease. This may be due to delay in diagnosis, biology, and other factors. However, there is no agreement in the scientific community as to why it appears so.
Read more about lupus symptoms here.
Is treatment the same for men and women with lupus?
While treatment is individualized, treatment options are the same for men and women.
Does lupus in men affect fertility?
Certain medications used to treat lupus can have an impact on fertility. Cyclophosphamide (Cytoxan) can affect testosterone levels and active sperm count. Methotrexate may reduce fertility in both men and women.
I don’t know other men with lupus and feel very lost in this. Are there support groups for me?
Yes, the Lupus Foundation of America offers a support group for men that everyone is welcome to join. We highly encourage you to connect with other men living with lupus, learn and share coping skills and find mutual support for meeting the unique challenges of your experience as a man living with lupus: Learn more and register for the meeting.
“I've found that sharing my diagnosis has actually strengthened relationships,” said Jacob Waters, a writer and lupus warrior. “It's an opportunity to be vulnerable, and that can lead to deeper, more honest connection.”
“You need to be honest with yourself, and you need to be honest with your care partner,” said April Reinhart, an LFA ambassador whose husband has lupus. “Open communication and being honest with your care partner is very important.”
How can I meet my expectations as a provider when I have to deal with the unpredictable symptoms of lupus?
Showing strength is important but allow others to help and support you. Do something that you love and allow you to still be a provider.
“You have to kind of train your mind through all the pain that we go through and everything,” said Lester Ransom, an entertainer and lupus warrior. “You also have to find what makes you happy and positive in order to get through your rough days.”
Additionally, identify activities or mental reminders that bring you joy to help you deal with your lupus symptoms.
“I have a playlist on my cell phone called, ‘Happy Playlist’, so whenever I feel [down], I play it,” Ransom said. “I have a photo album on my phone of all my happy moments with my family and my friends, and that's what kept me going in the hospital.”
Our health education specialists are specially trained to provide people affected by lupus with non-medical support, disease education, information, and helpful resources. You have lupus, but you are not alone.
The Lupus Foundation of America and our health education specialists have answered some of your most common questions. The provided answers are for educational and information purposes only. Consult with your doctor/health care team for medical advice.