Lupus: Living With The Wolf

Last Reviewed on: October 16, 2004
by Erica Heilman

It is estimated that 1.4 million Americans have lupus, an autoimmune disease that can affect many parts of the body such as joints, skin, lungs, kidneys, heart or brain. Most often its victims are women between the ages of 15 and 44.

Lupus is Latin for "wolf." and some think that the butterfly-shaped facial rash that often accompanies the disease resembles the markings of a wolf. But this signature does not lead to an easy diagnosis for all lupus sufferers. In fact, a survey conducted by the Lupus Foundation of America suggests that more than half of people affected by the disease live with symptoms for four years, and visit three or more doctors, before obtaining an accurate diagnosis.

Below, rheumatologist Dr. Robert Quinet from the Oschner Clinic Foundation answers some basic questions about lupus diagnosis and treatment.


What is lupus?
Systemic lupus erythematosus (SLE) is an autoimmune disease, which means that the immune system loses its ability to differentiate between ?bad,? or foreign materials, and its own cells and tissues. The body, essentially, begins to attack itself. Lupus most commonly affects young women between their early 20?s and early 30?s, and is actually one of the more common rheumatic diseases that we see among women. For most, the disease is mild and affects a few organs only. But for some, lupus can cause grave problems, and can even be life-threatening.

There is a wide range of symptoms associated with this disease. Are some more common than others?
People with lupus most typically have a rash and/or arthritis. One of the signature markings of lupus is a butterfly-shaped rash over the bridge of the nose.

But lupus can affect a number of organs in the body. Any sun-exposed area is often prone to the rash. You can get sores in the mouth, and arthritis, which often resembles rheumatoid arthritis. Pleurisy is another symptom, which is inflammation of the lining of the lungs-it causes chest pain. The most serious cases involve the brain, kidney and sometimes the bone marrow.

Do people always have more than one symptom?
No, they can present just with arthritis or just with rash. There are all different presentations. But far and away the most common presentations would be rash or arthritis, or a combination of both.

Ninety percent of people diagnosed with lupus are women. Why is the disease so much more prevalent among women? Estrogen seems to play a role. If you remove the ovaries of female mice that are already prone to lupus, you tend to get an earlier onset and worse disease.

Do we know what actually causes the disease?
No, but certain triggers of the disease are being studied, such as various viruses, including Epstein Barr virus, certain environmental factors and medications that have been shown to induce lupus, mainly cardiac medications.

How is the diagnosis made?
We start with an antinuclear antibody test, or ANA. Over 95% of lupus patients will have a positive test. It?s very sensitive at detecting the disease. It?s not very specific because there are a lot of other causes of the ANA potentially being positive. So it has to be interpreted in the context of the patient?s symptoms. If it?s significantly positive, there are specific autoantibodies that are done to pin down whether it is lupus or whether it?s a false positive.

The laboratory studies include evaluation of the kidneys, like a urinalysis, and a blood test to measure the function of the kidneys. Then just the regular complete blood count, which may show a low white blood cell count or low platelets or anemia.

Putting all the laboratory findings and the patient?s symptoms together, we can usually make a diagnosis without great difficulty.


Who is best qualified to make the diagnosis?
Rheumatologists are the most familiar with lupus, then internal medicine doctors. Family practitioners may not be as familiar with it. Most family practitioners who suspect the diagnosis refer the patient fairly promptly to a rheumatologist.

Are there effective treatments for lupus?
Steroids are the most important medication for lupus. But there are other medications that we use in addition, such as the antimalarial drug Plaquenil (hydroxychloroquine). Sometimes we need to add immunosuppressive drugs, and for serious involvement of the kidney or the brain, we sometimes need to use a chemotherapeutic agent. A drug called CellCept (mycophenolate), which is a transplant medication, has been used in certain cases of lupus as well.

How long do people often have to be on these drugs?
They?re usually on some medication for most of their lives, typically a low-dose of prednisone or at least the Plaquenil. The medications are constantly being adjusted; dosages change based on the patient?s symptoms and their laboratory results.

Is there a cure?
No, it?s a chronic disease although it can go into remission in some cases. Most patients need to be on a maintenance program of medications.

Dr. Robert Quinet is the Section Head of Rheumatology at Ochsner Clinic Foundation in New Orleans.