It’s estimated that at least 1.5 million Americans are suffering from lupus. For reasons that aren’t entirely clear, autoimmune diseases tend to affect more women than men. In the case of lupus, a whopping 90 percent of those afflicted are women who are often diagnosed in their childbearing years. Another characteristic of lupus is its prevalence in women of color — the disease is two to three times more common in Hispanic, Asian and African-American women than in Caucasians.
The definite cause of lupus has yet to be determined. Scientists consider lupus an autoimmune disease, which means the immune system may attack healthy tissues virtually anywhere in the body, potentially causing inflammation, pain and damage.
“There is not one organ system in the body that is protected against the potential effects of this disease,” says Susan Manzi, MD, professor of medicine at the Temple University School of Medicine in Philadelphia, Pa., and a member of the Lupus Foundation of America's Medical Advisory Council. “Anywhere in the body that there’s a blood vessel, there can be symptoms.”
Symptoms of Lupus
Lupus can affect many different parts of the body, so symptoms can be diverse. It’s also common to have alternating instances of symptoms flaring up and fading.
Here are some of the more commonly recognized symptoms of the disease:
- Extreme fatigue;
- Headaches or muscle aches;
- Painful or swollen joints;
- Weight changes;
- Anemia (i.e., low numbers of red blood cells or low total blood volume);
- Swelling in feet, legs or hands;
- Puffiness around eyes;
- Pleurisy (i.e., pain in the chest when taking a deep breath);
- Butterfly-shaped rash across the cheeks and nose;
- Sensitivity to light or sun;
- Abnormal blood clotting;
- Raynaud’s phenomenon (i.e., fingers turning white or blue when cold);
- Hair loss; and
- Mouth or nose ulcers.
How Lupus is Diagnosed
Since lupus can cause such varied and intermittent symptoms and because there is no one blood test or biopsy that can determine the disease, it may be mistaken for other chronic conditions such as rheumatoid arthritis, certain blood disorders, fibromyalgia, diabetes, thyroid problems or Lyme disease.
“A lupus diagnosis takes a physical exam, a complete history and the right expertise to make an accurate diagnosis,” says Manzi. Your doctor will look at your symptoms, your medical history and the results of various tests. A blood test that looks for antinuclear antibody (ANA) is one of the more important measures. However, most people with lupus test positive for ANA, but it is still not definitive, since you can test positive and not have lupus.
While there is no cure, treatments can suppress symptoms and address complications. Different options may be considered depending on the severity and impact of the lupus. Milder lupus might be treated with less intensive therapies such as sun blocks and NSAIDs.
A family practitioner or internist is a good place to start and may refer you to a rheumatologist if needed. “It’s important to note that we don’t consider lupus a disease we can cure,” says Manzi. “It can be controlled, but the vast majority of patients will need to be on some sort of treatment ongoing.”
Additional cautionary steps:
- Stay out of the sun. Since UV radiation has been shown to cause flare ups, sun protection and sun protective clothing are important when spending time outdoors.
- Use skin cream. Topical steroids can help with skin rashes; non-steroidal anti-inflammatories can ease joint pain; and prednisone (a potent anti-inflammatory) can help with skin conditions, joint pain and fluid buildup around the heart or lungs.
For Family Caregivers
If someone you love has lupus and it has progressed or doesn’t seem to be responding to treatment, encourage seeing a doctor. The doctor may be able to offer other options such as medications or could help to develop a new plan medications. Certain chemotherapy-type drugs and medications used by organ transplant patients are sometimes used for more severe cases of lupus.
Also, take heart and stay tuned: newer therapies have emerged and are in development for lupus, and clinical research is uncovering additional lupus-specific treatments and different chemical compounds that may target the immune cells responsible for the cellular damage.