Lupus, an autoimmune disease, is not much known among the patients and Public. In the recent years, the world has taken Lupus and related diseases seriously and has realised the fact that if patients are not treated in the preliminary stages the outcome will be disastrous. Globally May 10th is observed as the World Lupus Day and the medical community across the world conduct various programmes to spread awareness among the general public about Lupus. In India, Bangalore-based ChanRe Rheumatology & Immunology Center & Research (Chanre) stands in the forefront in Lupus related research and treatment for the past two-and-a-half decade and actively spearheading Lupus related awareness programmes. Renowned Rheumatologist & Immunologist and the President of Indian Rheumatology Association Dr Chandrashekara.S, MD, DNB, DM of ChanRe shares his insight about the Lupus in detail with Jaishankar Jayaramiah of The OnLook.
Dr Chandrashekara.S is a well known face in the Indian medical field and has been awarded with ‘Sir. C. V. Raman Young Scientist State Award in the field of Medical Sciences’ by the Govt. of Karnataka for the year 2013. He has 150 publications in international and national journals, more than 40 papers in Conferences / seminars, 20 reference books in Rheumatology & 9 patients education books among many more in addition to being the Editor of Internet Journal of Clinical Immunology & Rheumatology.
Excerpts;-
What is Lupus? Can you please brief about the nature of disease?
Lupus is a chronic serious autoimmune disease. It occurs when the immune system attacks healthy cells and tissues by mistake. This attack causes inflammation. It can also damage many parts of the body, including the joints, skin, kidneys, heart, lungs, and brain.
What are the symptoms of lupus?
Lupus can have many symptoms, and they differ from person to person. Some of the more common ones are painful swollen joints and morning stiffness, continuous fever, fatigue or feeling tired often, red rashes most often on the face, hair loss in patches, mouth ulcers, some may even have lungs problem with fluid collecting on the sides of lungs and some may have abdomen fluid collection what we call as Peritomites. In some serious conditions, the patients develop kidney involvement called Lupus nephritis. Some get affected in Central Nervous System (CNS) called CNS Lupus. And few serious symptoms include heart involvement called myocarditis. It can also affect the gastrointestinal system termed as Lupus enteritis. Liver problem called as hepatitis. And it can also effect muscles what we call as Lupus myositis. In a nutshell it can affect any organ of the body.
How do you categorize the Lupus patient to undergo treatment?
As it does not have one single presentation, we call it as Heterogeneous disease in the medical world. Patients can have combination of the above mentioned symptoms. The patients may have skin plus kidney problem, skin plus brain, skin plus lung. So we categorize Systemic lupus erythematosus (SLE) patients into mild, moderate and severe.
Can you bit elaborate on mild, moderate and severe conditions?
If the patient has only joint pain that is involvement of musculoskeletal system or involvement of skin and little bit of oral ulcers then usually we consider them as mild disease. The reason is that there is no life threatening organ affected. It causes lot of disturbance, no doubt, but it is not life threatening. If patient has involvement of Kidney-Lupus nephritis or involvement of brain- CNS Lupus then they are severe disease. And the one in between these two are moderate diseases.
How you term the outcome of these diseases?
The outcome of the SLE patient depends on the above mentioned categories. Usually mild to moderate can have a good outcome. In this case very low profile drugs are enough. The drugs like Hydroxychloroquine can be used and use of steroid in this case also very minimal. With this the disease comes under control in most of the patients. The patients in severe category really causes challenge to both patient themselves and the medical practitioners. High end medications like rituximab and mycophenolate are used for this category of patients. We use the mix of high end and moderate drugs to treat the patients with moderate problems.
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What is the life expectancy for SLE patients?
Generally, SLE with low disease like mild they can almost have a life expectancy as any other normal person when they start getting treatment from their preliminary stages. in 1980s, generally the severe SLE patients under treatment had life expectancy for 5 years. But with the current advance medicines, the 70% patients with severe SLE are living beyond 10-15 years. So most importantly, the patients should start the treatment at early stages.
Can you please throw light on Lupus research?
Extensive research is going on in the area of Lupus worldwide. In India, we Chanre as a Rheumatology & Immunology Center & Research organization conducting various researches on Lupus. Other institutions like Sanjay Gandhi Postgraduate Institute of Medical Sciences (SGPGi), Nizam Institute at Hyderabad and a few Rheumatology institutes are also involved in Lupus research. Globally several new medicines are being introduced. With these new arrivals of medicines, the life expectancy of severe SLE patients are expected to increase. With the advanced researches being done worldwide, we expect in the two decades down in the line, we can cure the severe SLE patients. This is a complicated disease. Still we are trying to understand the intricacy of the disease. Once we break it, we will be in a position to resolve it in a better way.
Is this disease a gender specific and or common to anyone?
Unfortunately, it mostly affects young females in the age group of 13-23 years. And it is less common after this age. It can also occur in men. It occurs in 9:1 ratio. If nine women gets SLE only one men may be affected with this disease.
Whether women affected with SLE can lead a normal life?
Certainly. If the SLE affected woman starts treatment at the early stage, she can live her life as any normal person. They can have comfortable marital life, they can conceive and give birth to child. Importantly, the child will not have risk of developing SLE just because its mother had it. Because SLE is not a hereditary disease. The society should look at this SLE affected women as a normal person. There are big achievers with Lupus. One good example is American actor and singer Selena Gomez. After Lupus and getting the Kidney transplantation, she has been active in her professional life as like any normal person. So life does not stop if the Lupus is diagnosed as long as the one take treatment.
If the woman affected with this disease comes in early stage, is it reversible?
If they come in early stages in mild to moderate category, the Lupus can be halted. Once the disease comes under control, we try to gradually withdraw the drug and there may be a point where ANA may disappear and all the indicator of SLE may disappear and we can stop the medicine. But only we should keep on a watch. Currently, very small proportion will achieve this.
What tests should be performed to identify this disease?
One of the commonest test is Anti Nuclear Antibody (ANA). But still ANA positivity doesn’t mean it is SLE. ANA can be positive in more number of patients in other diseases than SLE. Because 5% of normal population also have ANA positive, especially the women in the reproductive age group that is between 13 to 45 years. So, that’s why only ANA positive doesn’t mean it is SLE. If ANA positive with any of the symptoms that I suggested above, then only we can think of possibility of SLE. Then we do some test what is called as ANA profile and Anti DSDNA is another test being conducted in addition to other routine tests.
What is the percentage share of Lupus out of overall autoimmune diseases?
If you keep all the autoimmune diseases, Lupus accounts only 3-5%. Though it is in small numbers because of its severity, it is taken as one of the critical disease.
Can you bit elaborate about Chanre’s role in Lupus research and treatment?
We Chanre Rheumatology & Immunology Center & Research does extensive research in Lupus and has been treating this disease for the past two decades. Actually we have a trust called Immunology and Arthritis Research and Education Trust. We have even created what is called Lupus Fund since last year. There we are bifurcating the fund for research funding across India. Through this fund we are also supporting the poor patients who are in need. Last year we have supported to the tune of Rs 10 lakh and also borne the expenses of hospital admission, services and treatment for the poor people. And we are conducting extensive awareness programmes through camps, seminars, walkathon, journals, social medias to create awareness about Lupus among the people all over Karnataka state. So far we have treated more than 350 Lupus patients in Chanre.
Whether the medical practitioners treating autoimmune disease in general can treat Lupus too? And also please narrate about the expertise available in India.
Actually treatment to Lupus needs little bit special skills and attention since it is a complex disease. It is better to get treated by the experienced Rheumatologists. Across India, we have around 450 Rheumatologists at the ratio of 1 or 2 Rheumatologists available per district, which very less in numbers as compared to the population.
What kind of support is expected from the government in addressing this disease?
We expect the government to identify Lupus as one of the reimbursable disease. Since the poor people are unable to manage treatment, it should be covered under Insurance schemes as well as in the other government based schemes. And these patients need a sort of support whenever they go in to crisis. So the government should extend its helping hands.
How many drugs are presently available to treat Lupus at present?
Currently we have around 10 -15 drugs and another 15 are in the pipeline. But all these drugs are not available in India. May be 50% of these drugs are available now. For an example the Belulimab, which is a good medicine but it is not approved to sell in India. So we request the government to see to get most of these medicines available in India.
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