15 Questions - Men and Lupus

(August 2011) Though lupus affects mostly women, lupus can and does occur in males of any age. We are pleased to feature in August Robert Lahita, MD, PhD, FACP, FACR, FRCP, a renowned lupus clinician, investigator and author, who will answer questions related to “Men and Lupus.”

1. How do the symptoms vary between males and females?  Edison, NJ 

Some time ago physicians thought that men had worse lupus than women.  This is not the case. The symptoms between the two sexes are similar.  The course of the disease may vary in men and women, but that is not the same as the symptoms.

2. What are the various treatments for men with Lupus, specifically SLE?  Especially, if the male is very active in sports and lifting weights.  Are there long term side effects to cocktail of (CellCept, Prednisone, and Plaquenil)?  Saint Louis, MO

The treatments for men with lupus vary from patient to patient.  If you are active playing sports and working out, it probably means the severity of your disease is not that bad; you are inactive.  Most men with active disease have no energy to do those things.  Of the drugs mentioned to treat the disease, CellCept and Plaquenil would have minimal effects on over physical strength and energy. Prednisone on the other hand will give you energy at the beginning of treatment and control the disease.  Long-term use of that drug could result in some loss of muscle and weakening of bones due to progressive bleaching of calcium.   This is called osteoporosis and a problem as men age.  One long-term effect of corticosteroids like prednisone is flaccidity of muscles with decreasing strength.

3. I am a 55 year old white male.  My mother passed away from Lupus in the early 80's.  My question is can this be inherited from my mother? I have asked various physicians and the answer I always get is "it doesn't occur in men".  I know this is not true, however, when does it usually strike, symptoms etc and how is it properly diagnosed?  Mansfield, MA

First, lupus occurs in men.  When a doctor tells you lupus does not occur in men, it is time to find another doctor. Lupus is not inherited in a classical manner and the fact that your mother had lupus does not mean that you are going to get lupus.  When lupus strikes, certain criteria mean that a patient has the disease.  There are also other criteria that indicate activity.  Positive tests from blood do not mean you have lupus.  The clinical and lab tests have to mesh.  A rheumatologist should make the diagnosis.

4. Along with the feet, knees, hands, shoulders... I have swelling/pain of the spine and have mentioned it to my doctor repeatedly. The comment I get is that SLE usually doesn't affect the spine. What is your experience with this?

Swelling of the spine can be from many things, displaced discs, torn ligaments, etc.  Lupus can affect the spine if the spinal cord is involved with something called myelitis.  However, this nerve condition results in some degree of paralysis.  This is not pain and swelling.  If you have fluid in your legs and pelvis then the spine can be affected with the same swelling that is below.  This is called “anasarca”.

5. My husband died at 40 with lupus. Now my youngest son that is 23 is showing symptoms of lupus ...he has been getting a rash on his upper arms after being in the sun and has gained weight.  My husband was Native American and so my son is 1/2 Native American.   When should I think about getting him tested for possible lupus?  Dougherty, IA

Your son should be examined and tested.  There is no lab test to definitively diagnose lupus.  The clinical signs and symptoms along with confirmatory lab tests help make the diagnosis.  A son having lupus after his father had the disease would be unusual and is something that the geneticists look for.  It is not common.

6. I have had lupus for 10 years.  No family history, no history of alcohol or tobacco use. I was exposed to very high levels of trichloroethylene, Benzene and Mercury for years through a contaminated water source. Are solvents recognized as triggers or causes of Lupus?  Richmond, KY

To our current knowledge, solvents are not known to cause lupus.

7. My son was diagnosed with SLE at age 15.  He had class IV kidney involvement.  Following a harrowing 9-month regimen of cytoxan, high doses of prednisone, CellCept and numerous other drugs he gradually entered remission. He phased off all drugs except CellCept, which is the only drug he is still on.  Save for an episode of osteonecrosis of the femurs at age 20 or so, which we have under control and observation, and which undoubtedly resulted from his high/extended doses of prednisone, he is in pretty good health right now, looks terrific, and recently graduated college at age 22 in June of 2011.  So, my question is what are the chances that my son is ever going to have children, given his treatment and medical history? Is there any reason to hope?  Phoenix, AZ

There is always reason to hope that male fertility has survived some of those chemotherapeutic maneuvers.  Some physicians freeze sperm away to prevent the inability to have children when someone is going to undergo chemotherapy. Only recently have females considered freezing eggs for future implantation because of changes in technology.  Sperm is easy to preserve.  In some percentage of young men, fertility persists and there is no azoospermia (the absence of sperm) after chemotherapy. Therefore, there is reason to hope.  Have your fertility expert or your son’s urologist explore this.

8. I am a 23 year old male who has been diagnosed with SLE, it was about 2 months ago that I was diagnosed but have been having symptoms of SLE for about 6-8 months. I am on Benlysta and a myriad of other drugs including prednisone and Hydrocodone.  I have Lupus Nephritis also and have shown proteinuria, my question is are there different signs to look for in men who have lupus as to when a flare is coming, and, are men affected by lupus more harshly, especially young men because I’ve only had, in the last 6 months, about 3-5 really good days where I felt semi-normal?   Kearney, NE

Men are no different from females when it comes to severity of lupus. There are no different signs to look at in men who get the disease. Flares occur in both sexes and they are predicted in most patients by looking at biomarkers for flare.  These biomarkers are early depletion of complement and a steady rise in titers of anti-DNA antibody.

9. Does lupus tend to worsen as you age?  I am a 40 year old male that has been diagnosed with SLE 1 1/2 years ago.  Will I have more issues than I do now once I start to age?  I don’t smoke or drink and live a very healthy life style.   Killeen, TX

Ironically, lupus does not worsen with age.  In women, it is said that SLE gets better with age because of menopause.  Men are another story.  There are data to suggest that men worsen with age as testosterone levels decline.  I have only found one study to support this idea and thus find it hard to believe.  My overall observation is that men improve with age although older men have new disease.  Stay active and continue aerobic conditioning.  Eat well and stay sexually active.

10. I was diagnosed almost two years ago with discoid Lupus, but i also have joint pain (no swelling), is it related?  Pittsburgh, PA

A small percentage of all patients with discoid lupus develop systemic signs and symptoms.  You might be one of them.  Patients with discoid lupus who have joint pains, fatigue, sore muscles and fever (to name a few) should have an examination by their doctors.  Serological testing should confirm the presence or absence of antibodies and the levels of complement.  Both of those can tell the doctor whether you have systemic involvement.

11. Is there a connection between lupus and cardiovascular disease? Hendersonville, NC

Yes.  Patients with lupus have more vascular disease.  Patients with lupus can have something called accelerated atherosclerosis or coating of the blood vessels with fat. Patients with lupus can have altered fat metabolism and this can be worse with use of some of the medicines we give to control the disease like prednisone. In certain cases of the disease, we recommend the use of “statins” or cholesterol controlling agents to protect the patient’s blood vessels. Inflammation of blood vessels called vasculitis is also a problem in lupus patients.

12. I am a 25 year old male. I was diagnosed with SLE in March 2009. I take methotrexate and I was wondering is there anything I can do to build my endurance. I am always exhausted!  Syracuse, NY

Malaise and exhaustion are among the hardest symptoms to control in lupus patients. Nothing we give to control the illness results in a burst of energy and stamina.  Good nutrition, hydration and appropriate care of your body helps, but rest is important to resolution of fatigue.  Rarely, men have fibromyalgia, which is painful and prevents them from sleeping well.  It is associated with, but not a part of SLE.  We treat that condition differently than lupus.

13. Does it generally take longer, or do symptoms need get more serious, before a male is diagnosed with lupus?  Torrance, CA

The symptoms of lupus do not take longer to express themselves in men than in women.  If you believe that you have lupus, you should consult with a rheumatologist who specializes in this disorder and other diseases that can be confused with it.

14. How can you tell if you are just tiered from a good days work or doing too much or the fatigue being a possible Lupus flare?  Colorado Springs, CO

All men are tired after doing physical work.  If you have SLE and climb telephone poles, work at construction, or do heavy lifting, you are going to be exhausted after a day’s work.   Not every bout of fatigue is a lupus flare.  The LFA has specific parameters for defining a “flare” and you can get these by contacting your local chapter of the LFA.

15. Does a diagnosis of SLE usually mean there are other autoimmune disorders that the patient and his/her doctor need to be looking for as well?  St. Paul, MN

Yes. Your doctor should look for other conditions as well as lupus.  These conditions include fibromyalgia, thyroid dysfunction, and erectile dysfunction, to name a few.  Many conditions coexist with lupus that has nothing to do with the disease.  Conditions like depression and ED are quite common in men with many conditions, not just lupus.