Lupus~"It's Like Being Allergic to Yourself"

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"It's Like Being Allergic to Yourself"

Lupus is a chronic autoimmune disease whose cause remains a mystery despite intense, ongoing research by organizations such as the Lupus Association of America, the Arthritis Association, and the University of California, San Diego (UCSD) School of Medicine.

The body's immune system attacks its own organs and tissues, and presents itself as a wide range of symptoms that mimic many different diseases,  including fatigue, painful or swollen joints, anemia, kidney problems, hair loss, and sensitivity to the sun resulting in skin rashes.

Other common symptoms that may indicate lupus are a persistent low-grade fever less than 101 degrees Fahrenheit, unexplained weight loss, mouth or nose ulcers, incidences of pleurisy, and Raynaud's Phenomenon (fingers turn white and/or blue when cold). Patients may have only a few or many of these symptoms occurring at any given time. Thus, lupus is rarely diagnosed quickly.

"It is like being allergic to yourself," Karen Brown of Marion wrote in a recent letter to the editor in the Southern Health Magazine. "The immune system does not serve its normal protective function, but rather forms antibodies that attack healthy tissue and organs."
Brown, who was diagnosed in 2003 after several years of vague symptoms.

Depending on the patient and the severity of the symptoms, lupus can range from a mild case with occasional "flares," to a life-threatening condition. Although there is no cure for lupus, some patients go into a remission in which they experience few or no flares for many years.

Lupus strikes women more often than men, with the onset commonly occurring between the ages of 15-40, the childbearing years. For unknown reasons, sometimes the hormonal changes during pregnancy may trigger lupus, as Dr. Karen Strack, a physician at Heartland Regional Medical Center, experienced 20 years ago. But the hormonal changes at menopause may also put older women at risk.

"We have begun to see some cases of late-onset lupus that occurs around menopause in some women," Strack said. "Frequently, the symptoms may be dismissed as menopausal hormonal changes, or standard osteoarthritis, but physicians are starting to watch for this sub-set of the disease in older women."


Diagnosing Lupus

There are three specific types of lupus:
1) Discoid lupus affects the skin. It is characterized by constantly flushed cheeks and discoid (round-shaped) lesions that are usually raised, scaly, and red, but do not itch. Without treatment, the lesions may cause permanent scarring.

2) Systemic lupus erythematosus (SLE) may cause inflammation in the skin and joints for some persons, and in the lungs, kidneys, blood or central nervous system in others. SLE may also affect multiple organs simultaneously.

3)In rare cases, drug-induced lupus can cause a syndrome that mimics SLE, but rarely progresses to vital organs. Hydralazine, procainamide, quinidine, phenytoin, D-penicllamine, and isoniazid usually trigger the syndrome, which disappears after the drugs are discontinued.

Diagnosing lupus is very difficult since the symptoms vary so dramatically and could also be indicators of other diseases. The American Rheumatism Association has compiled a list of eleven symptoms, including blood test results, to guide physicians. If the patient has four or more symptoms, s/he likely has lupus.
Physicians also rely on a group of blood tests, including blood count, tests for kidney and liver function, and several others. But a good doctor-patient relationship can also play a key role in getting an accurate diagnosis.

"Diagnosing by the four out of the eleven symptoms is valid from a research point of view, but it isn't a hard and fast rule," said Dr. Iqbal Akhter, a rheumatologist in Mt. Vernon, IL. "The right diagnosis can also depend on the doctor's instinct and knowledge of the patient's past history."

"Lupus is a peculiar disease and it can affect you from head to toe," Akhter added. "Localized or discoid lupus and systemic lupus can sometimes occur together, so if a person presents with a skin rash the doctor should also look for indications of systemic lupus."
Because skin rashes may be an indicator of lupus, especially the "butterfly" shaped rash that appears across the bridge of the nose and both cheeks, dermatologists are often the ones who first diagnose the disease.

But even the rash can sometimes lead physicians down the wrong path. "Rosacea, another type of rash on the face, may be confused with the butterfly rash of lupus, so people can be misdiagnosed either direction," said Strack.
"People with rosacea can be diagnosed with lupus, but they don't really have it, while people with lupus can be misdiagnosed with rosacea. It's frustrating for the patient and the physician."

~Treating and Managing Lupus
Treatment for lupus depends on the type of lupus and degree of severity of the symptoms, so it usually requires a team of physicians who specialize in different areas.
Rheumatologists, in particular, commonly treat lupus patients since the disease may damage the joints and connective tissues. Helping patients manage the disease and live well despite its unpredictable flares is the primary goal of the medical team.
To best manage the disease, Akhter advises persons with lupus to take their medications faithfully, have regular check-ups with a rheumatologist, and depending on the severity of the case, to have regular blood tests to determine if the disease is progressing to other organs or even damaging the blood cells themselves.

"Patients with lupus can develop accelerated coronary artery disease, which could cause a heart attack even at a young age, so regular follow up visits are important," Akhter said.
Also, depending on the type of lupus, patients may need to take certain medications either short-term or long-term, and they must be monitored for side effects. According to Akhter, the commonly prescribed anti-malarial medication hydroxychloroquine, for example, may cause vision problems, so periodic eye exams are required while taking the drug.

"Topically applied corticosteroids can significantly reduce the inflammation/irritation of lupus related rashes," said Dr. George Nahass, a board certified dermatologist and dermatopathologist in Mt. Vernon who specializes in the diagnosis and treatment of all skin diseases, including skin cancers, acne, psoriasis, warts, rashes, eczema and vitiligo.

"Anti-malarial medications such as hydroxychloroquine can be of great value as well in treating the skin symptoms associated with lupus," said Nahass. "If necessary, oral corticosteroids or immunomodulating drugs such as azathioprine or cyclophosphamide may be useful to suppress the inflammation within the skin and other organ systems."

Preventing lupus flares is also a key part of the treatment plan. Stress and exposure to ultraviolet light are two common triggers. "If you have lupus and must go out in the sun, be sure to wear sunscreen, long sleeves, and a wide-brimmed hat to protect yourself," said Akhter. "Even exposure to some indoor fluorescent light may trigger a flare sometimes."

In addition to avoiding sunlight, regular exercise can also help prevent muscle weakness and fatigue. "Lupus patients can manage flares by maintaining a healthy lifestyle and reducing stress," said Nahass. "Get plenty of rest, eat a balanced diet, and don't smoke. Also, stay current on immunizations to protect against specific infections."

Research and Support

"Lupus is overwhelming and difficult to understand," Reeves said. "My hope is that the support group will grow and be a place where lupus patients can find comfort in talking about their illness. But sometimes it's too overwhelming for people to even attend the support groups, so they may need professional counseling, as well."
Reeves said that the outlook for patients with lupus has improved over the past several years and continues to be more hopeful.
"The latest research advances, new medications, and the increased understanding that physicians have about the disease can all help people manage the disease," Reeves said. "It's a chronic disease, so people with lupus have to be aggressive in their treatment and be consistent with it. But they can live a full life, even with lupus."


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