Lupus is not a women’s disease.  It is a disease that can affect any demographic category and gender, though it affects women the most. This article outlines how to recognize the symptoms of lupus in men and why they experience lupus differently compared to women.

• Introduction
• Why is SLE less prevalent in males?
• Symptoms of Lupus in Men
• In Conclusion

Introduction

What is the prevalence of lupus in men?

It is very difficult to determine the degree to which lupus affects the male population.  Lupus, itself, is a very difficult condition to diagnose, often requiring many tests spread over several years.  Public awareness of lupus in general is still rather low, and for many men, it simply is not on their radar as a likely cause for some of the symptoms that they may be experiencing.  Since lupus is less prevalent in men, it can also take longer for healthcare providers to come to an accurate diagnosis, than it might for women.  These factors all to the ambiguity of how many men have lupus.

The most commonly quoted statistic for men with lupus is that there is a 1:10 ratio of men to women.  This ratio is used in both popular and academic literature.  Given that some estimates for the number of individuals, both male and female, with lupus is 1.5 million in the U.S., we could estimate the number of men with lupus to be approximately 150,000.  Yet, not everyone agrees with those numbers.  According to the National Resource Center on Lupus, it is estimated that between 4% and 22% of those with lupus are male.  The Centers for Disease Control (CDC) uses different statistics and estimates that there are 4 to 12 women with lupus for every 1 man.  The College of Rheumatology simply states that lupus occurs 10 times more often in women than men.

Clearly, many more women are diagnosed with lupus than men. However, all of the disagreement and uncertainty in the percentages is a sign that much more needs to be learned about men with lupus.

Why don’t we know more about men with lupus? 

Lupus research itself tends to focus more on women.  Since there are fewer men than women with lupus, men make up a significantly smaller portion of patients who are studied, and in research, numbers matter.  There is simply less data on men living with lupus.  Of course, that is quite different from other areas of medical research, which have historically been dominated by male subjects.

Yet, research, itself, isn’t the only reason.  Culture also matters.  There are still cultural reasons for why men tend to stay more silent about their lupus.  Though it is changing, in some societies, men are often expected to be more stoic in the face of pain and ignore the fatigue that might label them as weak.  A man’s sense of masculinity may be threatened by admitting to having a “woman’s disease.” This is not helpful in the fight against lupus in men, and these attitudes need to change.

Below, is the story of one man, Charlie, who made the journey from silence to openness. While not all of his challenges had to do with being a man, his story reflects the way some men feel.

 

Additionally, even when a man is ready to open up and reach out about his lupus, the community might not seem to be there with the same support that is there for women.  All lupus support groups welcome men as much as women and they are a great source of information and support.  This is especially true when it comes to discussion of the symptoms, therapies and medical issues that both men and women experience in common.  However, it may be more challenging for men to find support and information form another male’s perspective concerning issues around sex, fatherhood, male grooming or being a husband with lupus.

Anthony Hardy, a writer and educator from New York, is a man living with lupus who has seen this lack of support personally.  In a blog for Tonic, a health and wellness website, he describes how the lupus community does not always feel inclusive to men, and he shares several stories where men feel left out.  Hardy writes, “While [the lupus] community isn’t some kind of exclusive club, this [lack of support] often leaves them feeling ostracized, without the hope that a support system can provide.”

This perspective can be understandable, and as with support for everyone with lupus, more can be done to reach out to men in particular.

Why is SLE less prevalent in men?

While there is some evidence for why men get lupus less frequently than women, we don’t know the exact cause for why anyone gets lupus.  So, there is still a great deal that needs to be discovered.  Interestingly, from a researcher’s perspective, the very fact that there are differences between men and women with lupus gives the medical community a place to start looking for answers.  The genetic and hormonal differences between men and women may hold the ultimate clues for the basic causes of lupus in everyone … and this gives us the best opportunities to find a cure! If there were no gender differences surrounding lupus, finding the root causes might be much more difficult.

Here are some of the current theories as to why there is a difference between men and women with lupus:

Women, in general, have a stronger immune reaction to many threats than men.  Research shows that women produce more antibodies in response to infections, injuries and even vaccinations than men produce. Since autoimmunity and SLE are examples of immunity going too far, it is likely that anyone who generally produces more antibodies to outside threats might also produce so many antibodies that some end up attacking their own tissues. Statistically, women have a higher probability of developing many autoimmune conditions compared to men, and this differing ability to react to infections and injury may be one reason for it.

The X chromosome may hold one of the keys.  Women usually have two X chromosomes (XX), while men usually have one X and one Y chromosome (XY).  X chromosomes seem to have a role in regulating (or not regulating) a person’s immune response, and it may be that the more X chromosomes your have, the more likely you might develop lupus.  As it turns out, males with an extra X chromosome – Klinefelter syndrome (XXY) – develop lupus at rate that is closer to that of women.  We just do not know why.

Hormones, specifically estrogen, also play a significant role.  Not everyone agrees on estrogen’s role, but some things seem pretty obvious.  Women usually produce much more estrogen than men.  Research shows that before puberty, girls are diagnosed with SLE about twice as much as boys are diagnosed.  However, after puberty, when estrogen levels increase in females, that jumps to nine times more often.  After menopause in women, when estrogen levels decline, so does the incidence of lupus. Why?  No one knows and there is still disagreement on how big of a role estrogen plays, but it is a good bet that sex hormones do affect the differences in lupus in men versus women.

Epigenetics and environmental factors may also play a role. There is no clear evidence that environmental factors affect the differences in the occurrence of lupus between men and women.  However, research into epigenetics – the study of how environmental factors can express genetic “changes” even without directly affecting a person’s DNA sequence – may also hold answers.  For now, we just don’t know.

Symptoms of Lupus in Men

In many ways, the symptoms of lupus between men and women are roughly equivalent.  This is particularly true when it comes to joint pain, fatigue and skin rash.  However, there are some significant differences.

First, there is a difference between males and females as to the age when lupus symptoms hit their peak.  For females, the peak is between the ages of 20 – 30, the height of their reproductive years.  For males, the peak is later, between the ages of 45 and 60 years.  Again, this would seem to show a pretty obvious link between lupus symptoms and hormones.

Second, men tend to have the symptoms of lupus for shorter periods of time.  However, they have a stronger inflammation reaction and tend to suffer more organ damage than women.  Men also seem to have a more complex set of symptoms than women, and if there is a delay in diagnosis, all this may contribute to the more damaging effects on men.

There are also specific symptoms of lupus that seem to affect men more dramatically.  Keep in mind that research is ongoing and this may change in the future.  They include:

• Discoid lupus (DLE): This is not just a symptom of SLE, but is its own form of lupus that mainly affects skin. It includes reddish, scaly skin, or other rashes that can worsen with sun exposure.  Male SLE patients are more likely to have discoid lupus, however, the lesions are not found to be more severe in men.
• Pleurisy or Pleuritis: Men have greater issues around lung conditions, including pleuritis, an inflammation of the thin membranes around the lungs that causes shortness of breath and pain.
• Renal (kidney) disease, also known as lupus nephritis: Though kidney disease is common to both sexes, men tend to have it more severely.  The symptoms include blood in the urine, swelling of the legs and feet, and/or high blood pressure.
• Vascular Diseases: Men are more likely to have issues with the heart and blood vessels than women; in particular, vasculitis (inflammation of blood vessels) is more common.
• Blood Clots:There is a protein, sometimes called “lupus anticoagulant,” which can cause blood clots in the legs or lungs and even lead to strokes.  Though it is not always associated with lupus, it is more commonly found in men.
• Seizures: Men experience more severe headaches and more frequent seizures from lupus than women.
• Peripheral Neuropathy: This refers to damage to nerves outside the brain and can take many forms with many symptoms.  It may begin with numbness or tingling in fingers and toes, then, worsen to shooting pain, throbbing or burning sensations. Men tend to experience these more severely.
• Hemolytic Anemia: While anemia is more common to women than men in the general population, there is some thought that this form of anemia, the destruction of red blood cells, is more common in men than women. Unfortunately, the research is not complete.  The symptoms include shortness of breath, dizziness, headache, coldness in your hands and feet, pale skin, and chest pain.

There are also examples of lupus symptoms that men seem to get less frequently and severely than women. These include:

• Fibromyalgia: This overlap disease is far more common in women with lupus than with men. 
• Alopecia or Hairloss: The damage to skin and hair from lupus seems to be less dramatic in men than women.  Also, discoid lupus of the scalp, not elsewhere, is more frequent in women than men.  It is important to note that scarring from skin lesions is about the same for both men and women.
• Thrombocytopenia: This condition refers to a low platelet count that affects the ability to create blood clots and control bleeding. This occurs more often in women and can cause increased bruising, nosebleeds and tiny red blood spots, especially on the legs.
• Neurological Disease: There are too many to describe here and not all are less important to men with lupus, but in general, beyond seizures, men seem to experience fewer neurological symptoms than women.
• Arthritis: On average, men seem to be less likely to show symptoms of arthritis, though both equally experience non-arthritic joint pain.
• Malar (Butterfly) Rash: Though men are more likely to have discoid lupus and severe skin lesions, they are less likely to show the malar rash than women.
• Sjogren’s Syndrome: Men are more likely to have peripheral neuropathy and hemolytic anemia that may make their hands and feet feel cold, yet, they are less likely than women to have the overlapping condition of Sjogren’s syndrome.

In Conclusion

Lupus is a disease that affects all genders. However, there are a few biological, psychological and cultural reasons why men experience lupus differently than women.  The more medical research that can be done on men with lupus, the more likely the causes and possible cures can be found – and that helps everyone!

 

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References

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Author: Greg Dardis, MS

Professor Dardis was formerly the Chair of the Science Department at Marylhurst University and is currently an Assistant Professor at Portland State University.  His focus has been human biology and physiology with an interest in autoimmunity.  Professor Dardis is also the President of the Board of Directors of Kaleidoscope Fighting Lupus.

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