15 Questions - Men and Lupus

1. Are men tested for lupus the same way women are?  Boston, MA

Men with lupus are tested the same way that women are tested. The immune systems are the same in both genders.

2. If hormones play a role in lupus, then why do men get lupus?

Hormones play a role in lupus but they are not the reason for lupus and not the cause. Many factors are involved including genes, and a factor that remains unidentified. Hormones can make lupus worse or better. This is an area of active research.

3. How can I help my husband cope with his lupus? His symptoms are not taken seriously because he is a man and lupus is considered a “women’s” disease.

No one’s lupus should be taken lightly.  In fact, we seek to treat men with lupus because their disease can be more serious. I would suggest that you get another doctor like a rheumatologist who takes your husband’s disease very seriously.

4. My PSA levels have ranged from 2 to 12 ng/ml over the past 8 years. All of my digital exams have been normal, as have biopsies and ultrasounds. I was diagnosed with SLE in December 2007.  My PSA values continue to fluctuate widely. The first week of May '10 it was 8.45 ng/ml; 2 weeks later it was 4.25. This past week is was 2.15. I keep telling my PCP that elevated PSA values are not unusual in male patients with SLE. He continues to insist that I see a urologist. While I understand his concern, with no changes in the anatomy of my prostate, why is it necessary to continue to have my prostate biopsied and/or examined with ultrasound probes? If my PSA was elevated and the anatomy of my prostate changed, I could see the need for a biopsy (usually 12 samples) or ultrasound.  --Bozeman, MT

You bring up a very good point. I have had several men who have had fluctuating PSAs and this is not a readily known fact, nor has research been done in this area (to my knowledge). Your doctor is being safe by having you continue to be biopsied. The elevated PSA in the absence of cellular changes suggesting cancer are not usual in normal men, so your doctor is not aware of this subtle change that involves this antigen in men with lupus. This might be a very important clue for men with lupus and something that I should publish. Thank you for that observation which I have seen but never reported.

5. I was diagnosed with lupus nine years ago, when I had my first child. We have traced my background on both my father and my mother’s side. We can't find anyone that would even have the traits of having lupus until now. My father is experiencing all the signs of lupus that I had with the exception of the butterfly rash across my face. I keep telling him to get tested and he stated that his doctor will not do it because he feels it is not that common in men. My father told the doctor that I was diagnosed with it; however, [the doctor] said I may have received it from my mother’s side. How accurate is this? Should I stay on my dad to find another doctor to have him tested? -- Hampshire, IL

Please stay on your dad to have the lupus tested by someone else. Mothers are not always the source of lupus. We have had several families where men have passed the disease down in over four generations. The references are available online. Your doctor is doing a disservice to your dad. Please get him tested. By the way, the butterfly rash is not always seen in men, or women for that matter.

6. I have had systemic lupus for over 8-10 yrs now. And it seems that every time I'm told by my doctor that I have something else, I find after researching that lupus could have a hand in causing it. Just what all does or can lupus do to a person over time. -- Hickory, NC 

May I refer you to my book “Lupus: Q and A". Lupus can do virtually anything to the human body. That is why we call it a multi-system disease. In some patients it seems like every organ is affected, while in others it could be just skin or kidneys or lung, etc. I think that you get the picture. Now I must say that SLE patients tend to blame everything on SLE even though the “flu” is the “flu” and diabetes is diabetes, etc. Lupus patients can have other conditions concurrent with their own disease.

7. My son who is now 18 was diagnosed with SLE with nephritis when he was 10. After some very severe flares starting in 2007 he has been in remission for 2 years. Is it possible that his male hormones have reduced the effects of the lupus? -- Savannah, GA

It is certainly possible that your son reaching puberty, with the abundance of male hormone, could have gone into a kind of “remission”. However, lupus is not curable at this time and one must take precautions to make sure that he does not go into the sun (if sensitive) or over exhaust himself under the false illusion that the lupus is totally gone. Tell him to be careful and if he is in remission completely after five years, then consider him blessed. This is very rare.

8. I have wanted children all my life, but ever since I was diagnosed with a resistant form of lupus I have had concerns about having a child due to the health of my sperm. How will lupus affect my sperm? And more so, being on multiple meds, having tried multiple meds, and planning on other meds is it safer for me to pay for artificial insemination? Would it be smarter if I had my sperm handpicked with a microscope to find the healthiest one, and then also to try and get a male child because it may be more likely a daughter would have lupus? I'd adopt but I'd love to have a child of my own genes. -- Urbandale, ID

I do not know where you get your information about damaged sperm. Sperm in lupus males is normal. In some rare cases we have found a condition where there is no sperm, but most of the men that I see are fathers of multiple normal children. You are correct in saying that chemotherapy can often lessen the sperm numbers and kill off some sperm, but that does not cause problems for any offspring that you might father. Since lupus is not classically genetic you might have ten children who would never get the disease. There is no guarantee that your future daughters or sons would get lupus.

9. My son has had lupus since he was 20 years old. Symptomatically it was difficult to internalize that he had lupus because he has had 4 brain surgeries for a pleomorphic xanthoastrocytoma as well, which keeps recurring. He is now 38 and has the phospholipid disorder and lung involvement from the lupus. He is fully functional and has a high level job, but he is in severe pain all the time. He also sleeps very little, perhaps 4 hours a night. He is suffering a severe lupus flares at this time. What would you advise for exercise and pain relief? His hands and feet are like "rocks" and have been for many years. He is my hero and never gives up, but I worry about anything he might do to improve his health and lessen his pain. -- Franklin, MA

Bravo for your son. He seems to have had his share of problems and is making the best of life despite them. Regarding his lack of sleep and pain condition, I believe that this might not be due to lupus but rather fibromyalgia. The latter is often mistaken for lupus flares and patients with this condition (associated with about 60% of lupus cases) often do not sleep which furthers the pain condition. Your son is complicated because the condition is generally treated with anti-depressants (for sleep and pain) and a weak analgesic (pain medicine, non addictive). If this is a true lupus flare, the antibody tests and the complement tests (your doctor should know how to get these) will be abnormal.

10. My husband has been diagnosed with lupus in June 2009. My question is the following: has there been any research related with food that may control the inflammations caused by lupus? -- Paramaribo, Suriname

No, there are no experimental studies with foods that would reduce the lupus flare or treat the disease. There is some scant data on the use of Cruciferate vegetables (kale, cabbage and cauliflower to name a few) which are supposed to tone down the over-active immune system, but these data are very “soft” and not truly tested.

11. My son (11) was diagnosed with lupus nephritis this past January (2010). He is on a 2 year treatment plan to hopefully push this into long term remission. If a flare up occurs, what are the odds that it will affect his kidneys again? -- Westland, MI

Your son needs to be monitored closely by a nephrologist (kidney specialist). There is always the possibility that he will flare as he reaches puberty, but this is not guaranteed. His kidneys are always vulnerable to the disease, but with good chemotherapy that should be preventable. The less flares he has, the better he should do in the future.

12. I've had lupus since 2005, at age 57. I am losing my strength my arms and legs. Is there anything I can do? My legs really bother me. -- Mokena, IL

The loss of strength in your arms and legs could be from several possibilities:  you have inflammation of the muscles, you have weak muscles as a result of the chronic use of steroids like prednisone, or you have some other metabolic problem like diabetes. Spinal disease unrelated to lupus can also cause these symptoms. Involvement of spinal cord with antiphospholipid syndrome could also cause muscle weakness. As you can see, you must be tested by a very bright rheumatologist to define the reasons for your muscle weakness.

13. Do men have the same or similar symptoms of lupus as women? My husband has symptoms that are almost identical to my lupus symptoms but no physician has ever considered that he might have lupus. -- Jonesborough, TN

Yes, men have the same symptoms as women. However, it would be very strange and reportable to have two people in the same family who are not blood related get lupus.

14. Is it common for men to experience a loss of libido? I've been shocked at my lack of interest in sex. -- Tacoma Park, Maryland

It is very common for men to have loss of libido when they have lupus. This can be real when the male hormone levels drop for unknown reasons. Some men have psychological issues which cause them to have a loss of libido and this can be related to depression over being diagnosed with the disease. Nocturnal erections generally indicate that the libido loss is psychological, whereas complete loss of erections (ED) could actually be the result of low levels of male hormone. A competent urologist ought to be able to distinguish between the two conditions.

15. I read that women have increased incidence of coronary artery disease if they have lupus. Does this also apply to men? -- Woodbridge, VA

Your question is very interesting. For some reason, both men and women with lupus have a higher incidence of accelerated atherosclerosis, but men have not been studied as closely as women so the answer is not as solid as found in women.  In other words, the answer to your question is that we think that accelerated atherosclerosis is due to immune factors common to both men and women with the disease—so they should share the risk of coronary disease equally.