Lupus Information

When people find out I have lupus, most of the time they will say "Oh, so-and-so has lupus." It is a disease that it is common enough that people have heard of it and know people who have it, but many people do not really know what it is. I have spent two weeks researching it, and I'm still not sure what it is. The difficulty in describing the disease is that it affects each person differently. It can be as mild as a skin rash to a life threatening disease destroying every organ in your body (heart, lungs, kidneys, brain, etc.). The symptoms are vast and come and go as they please. Lupus is often called "The Great Imitator" because it mimics other diseases and can be very difficult to diagnose. There are many sites available online if you want to learn more about the disease, but I'll cover some of the basics here.


What is systemic lupus erythematosus (SLE), or lupus?

The simple definition is that lupus is a chronic auto-immune disease -- "chronic" meaning long-term, and "auto-immune" meaning the body's immune system mistakingly attacks and destroys its own healthy body tissue. Normally, the immune system helps protect the body from harmful substances. But in patients with an autoimmune disease, the immune system cannot tell the difference between harmful substances and healthy ones. The result is an overactive immune response that attacks otherwise healthy cells and tissue. This leads to long-term (chronic) inflammation.

Four types of lupus exist — systemic lupus erythematosus, discoid lupus erythematosus, drug-induced lupus erythematosus and neonatal lupus.  Systemic lupus erythematosus (SLE) is the most common and serious form, and it is what I have been diagnosed with.  "Systemic" means that the disease can involve many parts of the body.

What causes lupus?

The exact cause of lupus is not known. Experts believe that some people are born with certain genes that affect how the immune system works and that they are more likely to get lupus. Then a number of other factors can trigger lupus attacks. These include viral infections, stress, and sunlight. Although these things can trigger lupus, they may affect one person but not another person.

What are the symptoms?

Lupus symptoms vary widely, and they come and go. The times when symptoms get worse are called relapses, or flares. The times when symptoms are not so bad are called remissions. Common symptoms include feeling very tired and having joint pain or swelling (arthritis), a fever, and a skin rash. The rash often happens after you have been in the sun. Mouth sores and hair loss may occur. Over time, some people with lupus have problems with the heart, lungs, kidneys, blood cells, or nervous system.

How is it diagnosed?

Lupus can be hard to recognize, sometimes taking weeks to years to diagnose. Lupus affects different people in different ways, and it can take time to develop the symptoms that suggest this disease. Your health professional will record your medical history and perform a physical examination, checking for the presence of certain criteria to help diagnose lupus. These criteria are used to separate lupus from other similar diseases. A person with 4 of these 11 conditions can be classified as having lupus. These conditions may be present all at once, or they may appear in succession over a period of time.

Classification criteria for systemic lupus erythematosus:

Butterfly (malar) rash on cheeks
Rash on face, arms, neck, torso (discoid rash)
Skin rashes that result from exposure to sunlight or ultraviolet light (photosensitivity)
Mouth or nasal sores (ulcers), usually painless
Joint swelling, stiffness, pain involving two or more joints (arthritis)
Inflammation of the membranes surrounding the lungs (pleuritis) or heart (pericarditis)
Abnormalities in urine, such as increased protein in the urine or clumps of redblood cells or kidney cells, called cell casts, in the urine
Nervous system problems, such as seizures or psychosis, without known cause
Problems with the blood, such as reduced numbers of red blood cells (anemia), platelets, or white blood cells
Laboratory tests indicating increased autoimmune activity (antibodies against normal tissue)
Positive antinuclear antibody (ANA) test

How is it treated?

Lupus is a life-long condition, and currently, there is no known cure. However, much has been learned in the past 20 years, and with proper treatment, it can be treated and the symptoms managed.

Medications cannot cure lupus, but they can control many symptoms and often can prevent or slow organ damage.  Your individual symptoms and severity will determine your treatment.  Common medications for lupies include Nonsteroidal anti-inflammatory drugs (NSAIDs) like naproxen or aspirin, anti-malarial medication such ashydroxychloroquine (Plaquenil), and corticosteroids such as prednisone. For more severe cases, the doctor may prescribe immunosuppresive medications or cytotoxic drugs (drugs that block cell growth). Medication treatment for lupus often involves reaching a balance between preventing severe, possibly life-threatening organ damage, maintaining an acceptable quality of life, and minimizing side effects.

One of the goals of controlling mild to moderate lupus symptoms is to prevent flares, the times when your symptoms are worse. This can be done by getting enough rest, reducing stress, avoiding the sun, exercising regularly, and learning the warning signs of a flare and taking steps to control them.