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Living with LUPUS: An incurable but a treatable disease

10/05/2021 at 12:12 AM

By: Prof Dr Jyoti Ranjan Parida

Due to over exposure of sunlight many a times we tend to develop red butterfly rashes on our cheeks or any other part of our body. But generally for many it is just a seasonal regular rash, which keeps occurring. Not even in ones wildest imagination can one think that it can be one of the 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

Today with appropriate treatment one lupus patient can live a normal life. Due to lack of awareness, early diagnosis and proper treatment, these patients are suffering from long term complications and organ damage. May 10th is celebrated as “World lupus day” 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 platform so that more and more people will be aware of this disease and offer help to these patient 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 recognizes our body at work and “begin” attacking “ our own cells. This leads to illnesses called autoimmune (self-immune) diseases and one of such disease is “Systemic Lupus Erythematosus” commonly known as Lupus. It is very difficult to diagnose 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?

Appearance of reddish malar rash, flat or raised over the cheek bones 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. Any young patient losing protein or blood in urine, unusual decrease in Haemoglobin, prolonged fever, joint pain etc may be the warning signs.

Is early detection possible for 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 patients presented with complaints of 2 or more systems. For example Somebody having joint pain, renal failure and decrease hemoglobin, 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, men, children and teenagers all can develop the same. Out of 10 patients, usually one is male and rest are females.

Is there any test to screen lupus?

Anti Nuclear Antibodies (ANA) test is done to screen for lupus if somebody presents with symptoms suggestive of the disease. The sensitivity and simplicity of an ANA test make 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 compliment 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 helps.

What exercises help Lupus patients?

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

What are the mainstay therapy for lupus ?

  As the overactive immune system is at fault 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 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, so treatment of lupus should be done under a trained rheumatologist or clinical immunologist.

What are the longterm complications of Lupus?

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

Can Lupus patients take COVID vaccinations ?

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 vaccine . These patients should consult with the rheumatologists and time their vaccination

A final word for these patients?

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

About the Author:

Dr Parida is the Professor and Head, Department of Clinical Immunology & Rheumatology, IMS and SUM Hospital and Medical College.

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