For months, doctors treated them for TB. They actually had lupus
Doctors say awareness about rare autoimmune disease among both public and frontline physicians remains low; high treatment costs add to burden.
Lupus is frequently misdiagnosed as tuberculosis in India because of overlapping symptoms, delaying treatment and increasing the risk of irreversible organ damage. (File Photo) At 16, Vijay Waghmare from Asangaon village in Maharashtra’s Satara district felt constantly exhausted. A passionate dancer, he spent most evenings practising with friends and initially brushed off the fatigue, weight loss and joint pain as the result of poor sleep, irregular meals and physical exertion. His farmer parents took him to a local physician, who prescribed painkillers. For a while, the symptoms eased. Within weeks, they returned and worsened.
Alarmed, his family took him to a private hospital in Satara, where doctors suspected tuberculosis and advised immediate treatment. But unable to afford prolonged care there, they travelled to Mumbai’s KEM Hospital. After extensive tests, doctors arrived at a different diagnosis: Systemic Lupus Erythematosus (SLE), a chronic autoimmune disease in which the body’s immune system mistakenly attacks healthy tissues and organs.
Now 19, Vijay has regained weight and strength, returned to dancing, and is responding well to treatment with immunosuppressive medicines. But like most lupus patients, he requires lifelong monitoring to prevent flare-ups and complications. His case is far from isolated.
A disease hidden behind common symptoms
Doctors say delayed diagnosis is common for lupus patients in India, where the disease is frequently mistaken for tuberculosis because of overlapping symptoms such as persistent fatigue, fever, weight loss, body pain and weakness.
Lupus can also cause joint swelling, skin rashes, sensitivity to sunlight and mouth ulcers in its early stages. Left untreated, it can progress to damage the kidneys, lungs, heart and even the brain.
For 20-year-old Kajal Patil from Mumbai’s Mazgaon, the diagnostic journey stretched for nearly 18 months. She was diagnosed with tuberculosis after experiencing severe fatigue and joint pain at 17 while preparing for her Secondary School Certificate examinations. As her condition worsened, she struggled to study and eventually became bedridden. After completing months of anti-tuberculosis treatment, her symptoms temporarily improved. But when they returned, she was diagnosed again — this time with multidrug-resistant tuberculosis — and underwent another prolonged treatment course. It was only when recurring fatigue, joint pain and skin rashes led her to KEM Hospital that doctors identified lupus.
She was started on high-dose steroids and other medicines to suppress immune activity. Over time, her condition stabilised. She has since completed her Higher Secondary Certificate examinations and now plans to enrol in a computer course.
Why is lupus so often missed?
According to doctors and researchers at the Indian Council of Medical Research–National Institute of Immunohaematology (ICMR-NIRBID), lupus awareness remains strikingly low in India despite the disease predominantly affecting young women in their reproductive years.
“Persistent fatigue and joint pain are often the earliest symptoms. If ignored, lupus can later affect the kidneys, lungs, heart and brain,” said Dr Vandana D. Pradhan, Scientist E and Head of the Department of Clinical and Experimental Immunology at ICMR-NIRBID.
The institute screens nearly 5,000 patients annually for autoimmune diseases, diagnosing approximately 200 new lupus cases every year. Most patients are between 20 and 45 years old, and women account for nearly 90 per cent of cases. Doctors attribute this gender disparity partly to hormonal factors, particularly estrogen. Patients with conditions such as polycystic ovary syndrome, thyroid disorders and other autoimmune diseases may face a higher risk.
“Autoimmune diseases often occur together. Thyroid disorders themselves are autoimmune conditions. But awareness about autoimmune diseases is extremely limited,” Dr Pradhan said.
While there is no cure for lupus, doctors say early diagnosis followed by continuous treatment — usually involving steroids, immunosuppressants and regular follow-up testing — can help control symptoms, reduce flare-ups and prevent irreversible organ damage.
The tuberculosis overlap
One of the biggest reasons lupus slips through the cracks is its clinical similarity to tuberculosis, still one of India’s most closely watched public health conditions. “There is very little emphasis on autoimmune diseases in standard medical textbooks unless doctors pursue specialisation,” Dr Pradhan said. “As a result, many patients presenting with weight loss, fatigue and fever are immediately evaluated for tuberculosis.”
The challenge is compounded by lupus’ unpredictable course. The disease typically follows cycles of flares and remission, where symptoms may improve temporarily before returning — often leading patients to stop medication midway, assuming they have recovered. Doctors caution that treatment interruption can trigger severe relapses and increase the risk of permanent organ damage.
A hidden burden, yet no national registry
India currently has no nationwide lupus registry, making it difficult to estimate the true scale of the disease. The Indian Systemic Lupus Erythematosus Inception Cohort for Research (INSPIRE), a multicentre cohort launched in 2018 involving more than 2,500 lupus patients across India, offers some of the clearest insights. Its findings show nearly 42 per cent of patients had kidney complications, close to 19 per cent had nervous system involvement and among more than 2,000 participants tracked, 170 deaths were recorded. Uncontrolled disease activity and infections emerged as the leading causes of mortality.
The financial and social cost
For many families, diagnosis is only the beginning of the struggle. Nithin Rajamani, a social scientist at ICMR-NIRBID who works with lupus patients on mental health and social support, said treatment costs remain a major barrier. “Depending on disease severity, patients spend around ₹3,000 to ₹6,000 every month on medicines alone,” he said. “That is apart from travel expenses, wage losses and repeated hospital visits.”
Specialised lupus diagnosis and treatment facilities remain concentrated in tertiary care hospitals in major cities, making access especially difficult for rural patients. Women often face additional delays because symptoms like fatigue and body pain are frequently dismissed as routine stress or the physical strain of household work.
“Many women dismiss fatigue and joint pain as part of daily life. In rural areas, even doctors may not immediately suspect lupus because testing facilities and awareness are limited,” Rajamani said.
These concerns were highlighted during an awareness programme organised by ICMR-NIRBID at KEM Hospital ahead of World Lupus Day 2025, observed under the theme “Make Lupus Visible.”
For doctors, researchers say, recognising lupus early can mean the difference between manageable disease and irreversible organ damage.
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