Frequently Asked Questions

Can you "catch" lupus?

Lupus is not contagious. While its exact causes are unknown, current research suggests that people who get lupus probably have a genetic predisposition to the disease and some outside environmental factor(s) create the correct conditions for the disease to become active in that particular individual. The conditions that cause (trigger) this disease to become active varies from one individual to the next.

What is the life-expectancy after diagnosis?

In today's medical environment lupus is considered highly treatable.  Barring other risk factors that influence life expectancy, with early diagnosis, appropriate medical care and certain (often minor) lifestyle adjustments, the vast majority of individuals with lupus can expect to have a reasonably "normal" life expectancy.  

Each individual with lupus is unique and will have a unique set of symptoms, treatments and prognosis.  Many individuals never have life-threatening major organ involvement.  If you work closely with your physician, she / he should be able to help you with the correct treatments and monitoring.  This is essential to ensure that if you do have major organ involvement with your lupus you receive prompt medical treatment to alleviate this and prevent permanent damage. 

I have lupus and have had the same sexual partner for six years. Will it (lupus) affect him?

Lupus is not contagious so he cannot catch this disease through physical contact (sexual or otherwise).  Any chronic illness puts emotional strain on that individual's relationships with family, friends and most of all their spouse / significant other, but with open, honest communication, those problems can usually be overcome.  You may want to read our article Sex and Sexuality with Ongoing Illness for more on the emotional impact of lupus on relationships.

Is lupus a disease that affects predominantly people of color?

African Americans, Latinos, Asians and Native Americans are at particular risk for lupus, however it can affect any ethnic group.  While lupus can occur at any age, and in either sex, ninety percent of those living with lupus are female; a diagnosis is most often made during the child-bearing years, between the ages of 15 and 45.    

Why do mostly women get lupus?

Because the cause of lupus is unknown, the exact answer to this is also unknown.  However, current research indicates that  "female type" hormones have an influence on disease activity in lupus patients.  In fact, many women with lupus find that their disease activity increases (flares) just prior to the time when they get their periods.  However, more research is needed to know this for certain.

I just met a lady with lupus and I don't know much about it. Is it appropriate to ask her questions about her illness?

This is a little hard to answer.  There was a time when people considered it rude to talk about medical problems at all.  However, times are changing and most people today would rather discuss this sort of thing openly than have people whisper about it behind closed doors.  Many individuals with lupus are quite comfortable discussing their illness.  If this acquaintance may one day develop into a friend, your understanding her illness will help you to be supportive.

Some acceptable questions to ask if you are curious about her illness would be "I don't know much about lupus.  Are you comfortable talking about it?"  or "I don't know much about lupus  Would you mind if I asked a few questions about it?"   If she says no or in any way seems uncomfortable with discussing it, be respectful of her feelings and change the subject.  Because many lupus patients do not "look sick," those who wish to keep it a secret are usually successful.  However, sometimes things like this do slip out and you need to use your judgment.  You are, of course, welcome to contact us with any questions you may have.

Is lupus hereditary? I have a (parent/sibling/other relative) with lupus. Should I be worried?

Although the exact cause of lupus is unknown, researchers believe evidence points to HEREDITY , hormones, infections (including viruses), immune system dysfunction, or some environmental occurrence. However, only 10 % of those with lupus will have a close relative (parent or sibling) who already has or may develop lupus. The chance increases to 50 % if you are an identical twin and your twin has lupus. Approximately 5 % of the children born to individuals with lupus will develop the illness.

Scientists suspect that individuals are genetically predisposed to lupus and that the disease remains quiet until a trigger sets the disease process in motion (this explains why the rate for identical twins with lupus is not 100 %!). If you have three or more of the symptoms on a regular basis, discuss your concerns about lupus -- including your concerns about increased risk -- with your doctor. A list of the common symptoms can be found on our Lupus Facts page.

I have a relative with lupus. Is there a screening test I can take to determine if I will get the disease?

Unfortunately, the blood test most often used to diagnose lupus, the anti-nuclear antibody test (ANA or FANA), is inconclusive. It is sensitive to, but not specific for, autoimmune disease. It indicates only the presence of autoimmune activity, which can be caused by lupus, certain drugs and other autoimmune or connective tissue diseases. A diagnosis of lupus usually requires a positive blood test and at least four symptoms.  The symptoms may not be present at the same time.

What type of exercise program would be appropriate for an individual with lupus?

Each individual needs to discuss this with her / his doctor.  Exercise in general is a good idea, however, due to the wide variety of symptoms and / or limitations that can be experienced with lupus, exercise programs need to be individually tailored.

I have read a lot about Echinacea and other dietary supplements that are designed to boost your immune system. I was considering trying one of these. Would this be a good idea?

Echinacea is a widely used herb in America primarily because of its ability to support the immune system in fighting off colds and flu.  Some physicians and other health practitioners feel that lupus patients may take Echinacea for short-term (one week) periods to speed the recovery of a cold or flu.  It is generally felt that long term use of Echinacea should be avoided by lupus patients because Echinacea may over-activate an already activated immune system.  Moreover, CNN reported that Dr. Mary Harris advises that anyone taking corticosteroids (Prednisone) should avoid Echinacea all together because Echinacea lessens the effects of the medication.  (Source: Lupus Foundation of America Library and CNN)

As with any dietary supplement, it is important for individuals with lupus to remember:
They are not regulated by the FDA, making it difficult to judge the purity/dosage of the product. Because of this lack of regulation, there can be wide variations in the composition of these products from one manufacturer to another.
You should discuss any supplements you are taking with your doctor to help you assess any possible interactions the supplement may have with your current and/or future medications.

I have a relative with lupus and he/she is crabby a great deal of the time. Why is this, and is there anything that can be done about it?

Maybe, but only a doctor can tell you for certain. We will list some of the possible causes for changes in behavior of a lupus patient.
Coping with a chronic illness like lupus can be a daunting task (see our articles in the Educational Resources section on The Benefits of Support and Depression in the Lupus Patient ). Depending on the source, studies indicate the number of individuals with chronic diseases who suffer from depression range from 15 % to as high as 60 %.
The medications used to treat SLE can cause side effects that alter a person's moods and behavior. One should always check with his/her doctor or pharmacist for a complete list of possible side-effects which may include agitation, confusion, mood swings, psychosis, depression and seizures.
In some instances, lupus can cause central nervous system involvement. Any concerns regarding mood and/or behavior changes should be discussed with an individual's physician. He/she is equipped to diagnose and recommend treatment for any of the possible causes.

I am confused about disability, can you tell me anything that may be able to clear this up?

Yes, Please see our Support Services section