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Men With Lupus and Antiphospholipid Syndrome

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By Michael D. Lockshin, MD, FACP

“Why don't they ever write about me?” I have heard that question so often that it might have occurred to me to volunteer to write something myself, but it did not, so Henrietta Aladjem, editor of Lupus World, volunteered me instead.

The reasons “they don't write about men are, I think, basically two: 1) thoughtlessness on the part of my colleagues and myself, and 2) there is not a whole lot to say. For the first, I apologize. Sexism, it seems, works in both directions. For the second, most of what is known about male-female differences in lupus or in antiphospholipid syndrome is fairly soft and not very dramatic information.

Only about 10% of lupus patients are men, although the figure may be higher for antiphospholipid syndrome. Antiphospholipid antibody syndrome consists of recurrent blood clots (such as strokes, or clots in the veins of the legs) and, in women, recurrent miscarriages, associated with anticardiolipin antibody or lupus anticoagulant. (Together these antibodies are called antiphospholipid antibodies.) The syndrome can occur either by itself (primary) or in patients with lupus (secondary). About one-third of patients with lupus have the antibody, but only one-tenth to one-fifth have the syndrome.

Studies differ in details, but more studies than not say that men with lupus may have more problems with blood platelets, blood vessel blockage and lung scarring than do women.

Prognosis is about the same in men and women. There may be a higher likelihood of disease in a second family member if the first affected member is male. Even so, the differences between men and women are those of a few percentage points of frequency -- 35% low platelets in men, 20-25% in women -- that sort of thing, nothing very major.

As far as I can tell, men with antiphospholipid antibody truly differ from women in only two ways: they don't get pregnant, so they don't have problems with pregnancy (or with fathering children), and the first doctors they see (in armed forces, in student health centers) do not believe them when they say their positive tests for syphilis must be falsely positive.*  As a result they get treated with penicillin more than do women patients. 

Because mouse lupus can be made better by taking away female hormones (castrating the mouse) and worse by administering female hormones, there has been much speculation about how “manly” men with lupus and antiphospholipid antibody syndrome really are. 

As I see it, they are perfectly normal males. Specific measures of hormone levels in men with lupus have given all sorts of confusing results. (In hormone studies, it is often hard to tell what is the result of illness itself.) 

In measures that they and their families can make, men with lupus and men with antiphospholipid antibody syndrome look like normal men; have normal beards, voices, hair patterns,**  muscles and other characteristics that I need not mention in polite company; they have normal sexual drive and performance; and they have normal fertility.   Homosexuality is no more common among patients with lupus and antiphospholipid antibody syndrome than among the population as a whole.

Furthermore, although some years ago there was a flurry of interest because one clinic saw several men who had both lupus and a rare, feminizing chromosome abnormality known as Klinefelter's syndrome, most other clinics have not, and the observation has not explained much about male lupus. Bottom line: men with lupus, except for their disease, are pretty normal.

Some doctors have tried to treat female patients with hormones. Current interest in treatment with DHEA is one such attempt. Results are mixed, even in men. The drugs that cause sterility in women also cause sterility in men. While there is much discussion about the wisdom of giving “post-menopausal” estrogen to women, I don't know of any significant research on giving testosterone to older men or to men who have been treated with cyclophosphamide.

A fair question is: should men and women with these diseases be viewed differently? The answer, in typical doctor double-speak, is both yes and no. No, because as far as we know today, the symptoms and the treatment for both men and women patients are the same. Yes, because any disease heavily weighted to one gender must have an explanation that is important, and yes, because the needs of women and men differ.

Thank you, my patients, and thank you, Mrs. Aladjem, for asking.

* A false positive test for syphilis is characteristic of the antiphospholipid antibody syndrome. Patients with this false positive test do not have syphilis, and the illness has nothing to do with infection by syphilis.

**   I have seen even very good doctors mistake hair loss due to lupus for normal male balding.

 

Michael D. Lockshin, M.D., FACP, is the Director of the Barbara Volcker Center for Women and Rheumatic Disease and Professor of Medicine, Hospital for Specialty Surgery and Cornell University Medical College, New York.   Reprinted with permission from Lupus World, Vol. 2, No. 1.

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