The following questions and answers are intended to help you better understand how lupus may present differently in men and women; however, you should always speak with your doctor about questions unique to your situation.
1. What is lupus?
Systemic Lupus Erythematosus (SLE or lupus) is a chronic autoimmune disease which affects multiple organ systems, resulting in tissue damage by autoantibodies (antibodies that attack healthy self-proteins). While many different parts of the body can be affected, SLE most often affects the skin, joints, and kidneys. The clinical manifestations of lupus are diverse, but common symptoms include fatigue, joint pain and swelling, fever, skin rash (“butterfly rash”), and sensitivity to light.
2. What is the male-to-female ratio of lupus patients?
The majority of lupus patients are female, with men comprising only 4-18% of those with the disease.
The male-to-female ratio in lupus varies between different age groups. Among children and early adolescents, one in four patients diagnosed with SLE is male. Between the ages of 15 and 50, males represent approximately 6-10% of patients diagnosed with SLE. After the age of 50, the disparity drops slightly, as men comprise one in nine new cases.
3. What is the mean age of onset of SLE in men versus women?
The mean age of disease onset for men is around 40, which is nearly ten years later than that for women. However, the diagnosis of lupus can be delayed in women - that is, it takes less time for men to be diagnosed with lupus once they present with symptoms. Lupus diagnosis after the age of 55 is termed “late onset lupus”; around 15% of patients with SLE will develop the disease later in life. When compared with SLE across all age groups, late onset lupus affects a higher percentage of men.
4. Why do so many more women have lupus than men?
While women comprise the majority of lupus patients across all age groups, the difference in rates of diagnosis by sex drops for pre-pubescent and post-menopausal age groups. The fact that rates of lupus diagnoses spike for women during their reproductive years suggests a possible link between certain sex hormones and SLE. Women with lupus have abnormally high levels of estrogen and low levels of progesterone; in addition, some men with SLE may have lower levels of testosterone and higher levels of estrogen than men who do not have lupus.
However, biological sex differences in immune function, especially those induced by sex hormones, are less likely explanations of sex differences. Recent studies suggest chromosomal basis and environmental exposure differences for the sex differences in the incidence of lupus.
5. Are lupus disease manifestations markedly different between men and women?
While the clinical presentation of SLE in men is largely the same as that in women, based on a limited number of small scale studies, the manifestations listed below may be more common for men with lupus:
A recent study by Resende, et al. concluded that lupus nephritis may be more severe in men. In general, men may have more severe disease activity than women, however, large scale studies are needed to better define disease activity-related differences between men and women. It is important to keep in mind that the results of many of these studies are not conclusive, given the limited number of male patients participating in them.
6. Is treatment different for men and women?
In general, the treatment of lupus is not different for men and women. However, if the patient is a female of childbearing age, doctors often try to prescribe medications with limited teratogenic (birth defect causing) effects.
Drugs that women should avoid if trying to become - or are currently - pregnant include the following:
Similarly, male lupus patients on immunosuppressive medications (e.g., methotrexate) should always have a detailed discussion with their physicians before considering pregnancy with their partners.
Each patient’s situation is unique and the course of treatment should be determined on an individual basis.
7. Are there reproductive issues faced by men and women with lupus?
Both men and women can experience reproductive problems related to their lupus diagnosis and treatment.
Women with lupus who become pregnant may experience disease flares, pregnancy loss, or other complications associated with high-risk pregnancies. While it is possible for women with lupus to have successful pregnancies, pregnant lupus patients are at a greater risk of preeclampsia (high blood pressure and excess protein in urine after 20 weeks of pregnancy), diabetes, urinary tract infections (UTIs), and preterm delivery.
Certain lupus medications can be safely continued through pregnancy; others can cause harm to the fetus and must be avoided (see question 6).
Male fertility is not thought to be directly affected by disease activity; rather, certain medications used to treat lupus have been shown to damage sperm producing cells. Studies have linked treatment with cyclophosphamide (Cytoxan) to an increased risk of infertility, in both men and women. It has also been found that men who are treated with glucocorticoid therapy may have reduced androgen levels.
If you have concerns about the medications you are taking, it is always advisable to speak with your physician.
8. Is there a difference in cardiovascular disease risk for men and women?
Lupus patients are at an increased risk for cardiovascular events - such as heart attack or stroke - independent of the cardiovascular disease (CVD) risk factors (e.g., hypertension, diabetes, smoking) to which much of the general population is susceptible.
Cardiovascular disease involves abnormal functioning of the heart and blood vessels (arteries and veins), which results in an increased risk of heart attack, heart failure, and stroke. Cardiovascular disease affects over half of all adults over the age of 60 and is a major cause of mortality in lupus patients.
Amongst the general population, risk factors for CVD include hypertension, diabetes, and high cholesterol; certain behaviors, such as smoking, inactivity, and alcohol consumption may also contribute to a person’s risk of developing CVD. In lupus patients, active disease is also independent risk factor for cardiovascular events. Urowitz, et al. has found that men with lupus may have an increased risk of cardiovascular disease as compared with female patients.
For further resources, HSS patients who have a diagnosis of SLE or are aPL positive can take advantage of the hospital’s free Cardiovascular Disease Counseling Program. The program offers risk assessment, patient education, and lifestyle modification recommendations. For more information, please call 1-800-SLE-CURE (753-2873).
9. What are some emotional difficulties that men with lupus may face?
Men and women may experience different emotional difficulties when it comes to their diagnoses. In addition to the stress of a diagnosis, difficulty working and/or performing physical labor may be a source of emotional distress for male patients, given the social expectations of “maleness.”
While men with lupus are no less masculine than other men, male patients may have a difficult time with the traditional cultural association of SLE as a “woman’s disease.” Because SLE is prevalent in women to a much greater extent, it may be difficult for male patients to find other men with SLE as a means of support.
10. What can men do to help them cope with their lupus diagnosis?
Whether you are a man or a woman, it is important to discuss with family and friends how your diagnosis could impact your daily activities, and to include them in a discussion of how you plan to modify your lifestyle. The internet is a valuable resource for connecting with other male lupus patients. Online support groups and message boards can be helpful forums for sharing information and reaching out to other patients.
Hospital for Special Surgery offers a number of patient support services. Patients can benefit from the Hospital’s programs - including a monthly SLE Workshop (organized by the Department of Social Work) - and counseling services.
Additionally, Hospital for Special Surgery provides free lupus classes, where patients can sign up for individual, ongoing sessions with the Mary Kirkland Center for Lupus Care Manager.
Learn more about the Mary Kirkland Center for Lupus Care.
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