What is t is SLE?

SLE (also called Lupus) is a chronic autoimmune disease in which organs and cells undergo damage mediated by tissue-binding autoantibodies and immune complexes. It is the prototype of the multi-organ autoimmune diseases. Autoimmune means immune system (antibodies and white blood cells) of a person attacks its own healthy tissue for the reasons not yet precisely identified. It can affect any part of the body starting from skin, joints to major organs like kidney, heart, lungs and brain. Lupus is about nine times common in women than in men. Lupus is more common in women of reproductive age group that is 15-45 years. Lupus can also affect children but only rarely. Although SLE is considered a rare disease, it is much more common than leukemia (a type of blood cancer). Its prevalence is 1/1000.

 What are the symptoms of SLE?

Symptoms may be non-specific and specific. People with lupus often have features that are not specific to lupus. These include fever, fatigue, weight loss, blood clots and hair loss in spots or around the hairline. Organ specific manifestations includes

Skin lesions: butterfly-shaped rash over the cheeks, referred to as malar rash and red rash with raised round or oval patches, known as discoid rash are the common manifestations. Rash on skin exposed to the sun (photosensitivity).

Oral ulcers: ulcers in the mouth or nose lasting from a few days to more than a month

Arthritis: tenderness and swelling lasting for a few weeks in two or more joints.

Lung or heart inflammation: inflammation of the tissue lining the lungs (referred to as pleurisy or pleuritis) or the heart (pericarditis), which can cause chest pain when breathing deeply

Kidney problem: blood or protein in the urine, or tests that suggest poor kidney function

Neurologic problem: seizures, strokes or psychosis (a mental health problem).

The most common internal organs affected are kidney and brain. Pregnant women can have miscarriages. Although it can affect any part of the body starting from skin, joints, to major organs like kidney, heart, lungs and brain, it is not a must that all the organs are affected in every patient. Some patient has only skin and joint involvement, some others have kidney and brain involvement along with skin and joint. So, it can have wide variety of manifestations which vary from patient to patient.

How is SLE diagnosed?

SLE is diagnosed by a physician based on clinical situation and positive results for ANA (Antinuclear antibody). Therefore, if you have positive ANA, you may need more specific tests to prove the diagnosis. These blood tests include antibodies to anti-ds DNA and anti-Sm. After diagnosing SLE, physician tries to see which are the systems affected by SLE. For this some blood and urine tests has to be done. It is extremely important to diagnose lupus early and as a missed diagnosis may cost the patient his/her life. If SLE is diagnosed early it can be very effectively treated and more than 90% of patients have very good results. Doctors also may measure levels of certain complement proteins (a part of the immune system) in the blood, to help detect the disease and follow its progress.

How is SLE treated?

There is no cure for lupus and its treatment is a challenge. However, treatment has improved considerably a great deal. Treatment depends on the type of symptoms you have and how serious they are. As mentioned earlier the immune cells are attacking different organs of the body. To decrease the attack we have to modify/suppress the function of the immune system. Steroids are required to control the disease fast, proper use of other drugs early in the disease will prevent the overuse of steroids and its side effects. Hydroxychloroquine is used to treat skin rash as well as many other manifestation of SLE. Other drugs like azathioprine, cyclophosphamide, mycophenolate etc are often used to treat Lupus. New treatment options include drugs called biologics. Examples are rituximab and abatacept. Recently another biologic, belimumab has also been approved for treatment of mild to moderate (medium severe) SLE. The drugs and modality of treatment depends on the organ involved. Which drug to use and for how long is decided by the Rheumatologist. It is extremely dangerous to take or to stop these drugs on your own. Further, you require regular follow up with your doctor and blood/urine tests as advised by your doctor. Keep your doctor informed about any problems while taking them or in case you develop new illness.

 Broader health issues with Lupus

Even when it is not active, lupus may cause problems later. Some of these problems can be fatal. One of these problems is atherosclerosis that may develop in younger women or may be more severe than usual. This problem raises the risk of heart attacks, heart failure and strokes. Thus, it is vital that patients with lupus lower their other risk factors for heart disease, such as smoking, high blood pressure and high cholesterol. It is also important to have as active a lifestyle as possible. Lupus may also cause kidney disease, which can advance to kidney failure and need dialysis. You can help prevent these serious problems by seeking treatment at the first signs of kidney disease. These signs include: High blood pressure, Swollen feet and hands, Puffiness around your eyes, Changes in urination (blood or froth in the urine, going to the bathroom more often at night, or pain or trouble urinating)

 Living with Lupus

Treatment of lupus has improved, and people with the disease are living longer. But, it is still a chronic disease that can limit activities. Quality of life can suffer because of symptoms like fatigue and joint pain. Furthermore, some people do not respond to some treatments. Also, you may not be able to predict when lupus will flare. Such problems can lead to depression, anger, loss of hope or loss of the will to keep fighting. The best way to control lupus is to follow these tips.

Form a support system. A good doctor-patient relationship and support from family and friends can help you cope with this chronic and often unpredictable illness. Get involved in your care. Take all medications as your doctor prescribed, and visit your doctor often. Learn as much as you can about lupus and your medications, and what kind of progress to expect.

Stay active. Exercise helps keep joints flexible and may prevent heart disease and strokes. This does not mean overdoing it. Avoid excess sun exposure. Sunlight can cause a lupus rash to flare and may even trigger a serious flare of the disease itself. When outdoors on a sunny day, wear protective clothing (long sleeves, a big-brimmed hat) and use lots of sunscreen.

Pregnancy: If you are a young woman with lupus and wish to have a baby, carefully plan your pregnancy. With your doctor’s guidance, time your pregnancy for when your lupus activity is low. While pregnant, avoid medications that can harm your baby.