World Lupus Day: Know What Expert Says About This Incurable But Treatable Disease

Many times, we tend to develop red butterfly rashes on our cheeks and other parts of our body due to overexposure to sunlight. But generally, for many, it is just a seasonal regular rash, which keeps occurring. Not even in one’s wildest imagination can one think that it can be a major symptom of an autoimmune disease called ‘Systematic lupus erythematosus. The manifestation of this disease may vary from simple skin rash to grave complications like kidney, brain, and heart involvement

However, with appropriate treatment, a lupus patient can live a normal life. Sadly, many patients suffer from long-term complications and organ damage due to lack of awareness, early diagnosis, and proper treatment.

May 10 is celebrated as “World Lupus Day” every year, to create awareness about this incurable but potentially treatable disease. The theme for Lupus Day this year is “Make Lupus Visible” by using social media and other platforms so that more and more people become aware of this disease and offer help to patients in getting early treatment.

What is Lupus?

Sometimes, our immune system goes awry and wild. It misreads signals. As a result, our defenses do not recognise our body at work and “begin” attacking” our own cells. This leads to illnesses called autoimmune (self-immune) diseases and one such disease is “Systemic Lupus Erythematosus” commonly known as Lupus. It is very difficult to diagnose it as different patients may have different presentations. It can affect one’s skin, joints, blood, heart, kidney, brain, etc.

What are the warning signs and symptoms?

The appearance of a reddish malar rash, flat or raised on the cheekbones also known as “butterfly rash” due to its shape is a very classical symptom of lupus. Rashes over sun-exposed areas, painless oral or Nasopharyngeal ulceration, or excessive hair loss may be other features. The warning signs among young patients are losing protein or blood in urine, unusual decrease in haemoglobin, prolonged fever, joint pain, etc.

Is early detection possible in Lupus?

Lupus is called the “great imitator” because its symptoms mimic many other diseases. It is very difficult to diagnose unless one specifically looks for it. So a trained and alert physician can help.  No single test or symptom can diagnose lupus. Considering its multisystemic nature, usually, Lupus is suspected when a young patient presents with complaints of two or more systems. For example, if someone has joint pain, renal failure, and decreased haemoglobin, along with fever then lupus should be suspected.

Is there any specific gender and age group which is more prone to the ailment?

It mainly affects females in the age group of 15 – 45 years. However, it can also develop among men, children, and teenagers. Out of 10 patients, usually one is male and the rest are females.

Is there any test to screen lupus?

Anti Nuclear Antibodies (ANA) test is done to screen for lupus if somebody presents symptoms suggestive of the disease. The sensitivity and simplicity of an ANA test makes it extremely popular to determine the intensity of the disease. But this is not a specific test and can be present even in normal people. Once ANA test positive, then anti-dsDNA and complement tests are done to confirm Lupus.

Is it contagious?

No, it is not contagious, not even through sexual contact. So don’t have any social stigma to live with Lupus patients and give them emotional and moral support as they need it most.

 What precautions should Lupus patients take?

Out of all the environmental factors, sunlight is known to aggravate lupus. A person suffering from lupus should use sunscreen lotion and avoid UV lights. Besides, avoiding stress and fatigue and quitting smoking always help.

What exercises help Lupus patients?

Regular Aerobics and deep breathing exercises help in a long way. They heal mentally and physically. But they should be practiced along with prescribed medicines

What is the mainstay therapy for Lupus?

As the overactive immune system is at fault for causing harm to different organs, so immunosupressive drugs are the mainstay of treatment. Corticosteroid is life-saving but its unnecessary prolonged use may have side effects. When treatment is required for a prolonged period, other drugs like hydroxycholoroquine, cyclophosphamide, azathioprine, mycophenolate, etc are used, which help in decreasing corticosteroid  dose. Because all these drugs may have side effects, treatment of lupus should be done under a trained rheumatologist or clinical immunologist.

What are the long-term complications of Lupus?

Complications may be related to the disease itself or related to its treatment. If not treated well, it can cause kidney failure, bone destruction( avascular necrosis), atherosclerosis and heart disease, etc. These patients are also at risk of infections and osteoporosis as a side effect of its treatment.

Can Lupus patients take COVID vaccination?

Lupus patients can take COVID vaccines like normal patients and both vaccines available in India (Covaxin and Covishield) are safe to use in these patients. Only patients who are on high-dose steroid (more than 10 mg prednisolone) or immunosuppression medicines may show little less response to the vaccine. These patients should consult the rheumatologist and time their vaccination.

A final word for such patients?

Although there is no permanent cure, if treated at the right time, a majority of Lupus patients can lead a normal life. Acceptance of the disease and compliance with medications are determinants for a better outcome. Recent advance in the molecular understanding of the disease has provided enough hope for breakthrough treatment in the near future.