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Living with Systemic Lupus Erythematosus (Lupus)

Living with Systemic Lupus Erythematosus (Lupus)

Lupus, another name for SLE, is an autoimmune condition with a wide range of symptoms. Living with lupus is challenging.  Gaining more knowledge about lupus aids in coping with it. This page addresses the frequently asked questions by lupus patients.

What is SLE?

Systemic lupus erythematosus (SLE) is a systemic autoimmune disease in which the immune system targets and damages immune cells. Although it can affect people of all ages, the 15–45 age range is the most typically affected. More women than men are impacted.

What causes SLE?

The exact cause is not known. Depending on the genes that are in each person’s body, Lupus is exacerbated by several environmental factors, including smoking, viruses, ght, stress, and stress. However, it has been found that many things predispose patients to SLE.

What are the symptoms of lupus?

The symptoms of lupus vary from person to person. Symptoms may come and go at different times. A few of these include joint pain, skin rash, exhaustion, fever, weight loss, hair loss, oral ulcers, seizures (fits), headaches, changes in finger or toe colour when exposed to cold air, shortness of breath, pain when breathing in, passing frothy or less urine, blood clots and  recurrent miscarriages.

How is it diagnosed?

A single test is insufficient to identify clinical lupus. However, a combination of bedside examination and blood tests can help to diagnose it: the ANA test (found to be positive in 95% of patients), Blood cell counts, liver and kidney functions, anti-dsDNA, and urine testing.

Is it curable?

SLE, like diabetes and hypertension, is treatable but not curable. Better therapy alternatives have recently become available, improving control of SLE. Patients usually resort to stopping medicines, trying alternative systems of medicines, and land up in emergencies. Experts offer the most assistance possible for a happy existence. Patients with lupus will always have the disease.

Is it hereditary?

Not predictable typically. Lupus has a complex etiology. Although there is a chance that children will develop lupus, the disease does not have a set pattern of heredity.

What are the treatment options available?

SLE is treated expertly by rheumatologists. In order to control the condition in its early stages, steroid pills, creams, and injections are available alternatives. Be not alarmed by adverse effects; physicians are aware of them and keep an eye out for them.

Additional medications include biologic therapy, anti-malarial medications such as hydroxychloroquine, DMARDs (disease-modifying anti-rheumatic medications), medications to control high blood pressure and cholesterol, and particular medications such as cyclosporine and MMF.

How frequently should the doctor be consulted?

Ideally, at the beginning, once a month. It can be reduced to once every two to three months once the illness is under control.

What can I do from my end to keep my lupus under control or feel better?

Lead a healthy lifestyle: This is very beneficial for those with lupus. Consume a diet rich in fruits, vegetables, nuts, dairy products, and other nutritious foods; avoid refined sugars and sweets. Continue to move. Walking and taking the stairs whenever possible, as well as doing light at-home workouts, are all excellent ways for lupus patients to maintain their bones and muscles strong.

Refrain from smoking and other addictions: Aim to reduce or eliminate both physical and mental stress. One can think about practicing mindfulness or meditation, among other relaxation techniques.

Avoid excess sun exposure:Use a good sunscreen with a sun protection factor (SPF) of at least 30 or take the doctor’s advice.

Show an expert in lupus (like a rheumatologist): Follow their directions.

Get educated about SLE: It is essential for patients to be well-informed and knowledgeable about their illness in order to make wiser treatment choices. They ought to request patient education materials from their physician.

Plan pregnancy: Let your rheumatologist/doctor know if you want to plan a pregnancy. It should be avoided if you have active disease. The doctor can guide with appropriate contraception methods or ways to avoid pregnancy till the disease gets controlled.

Acknowledge your feelings and seek support.There is no currently any cure for lupus. It can affect many parts of your life.It is normal to feel afraid, frustrated, depressed, and occasionally furious, and it can impact many aspects of your life. Recognize these emotions and seek help of your rheumatologsit if necessary.

As lupus is a life-long disease, it is essential to see your doctor regularly to ensure it stays under control.

Please visit Dept of Rheumatology and consult our Rheumatologist to learn more about SLE.

By,
Dr. Mahabaleshwar Mamadapur
Assistant Professor,
Dept of Rheumatology,
JSS Hospital, Mysuru