Hrishita Gupta, 23 years old is a teacher in Siliguri and has lived with a Juvenile Lupus diagnosis since 2014. She shares her experience of managing this complicated condition and how she copes with Systemic Lupus Erythematosus (SLE).
Diagnosis
I had fever for very long time and in 2014, at the age of 14, I was advised a Tuberculosis test which was mild positive and I was treated for TB for 3 months. In 2013 I had developed joint pain which may have been due to Arthritis, but that was never diagnosed.
Later when I got rashes on my face and consulted a local Dermatologist, he thought it could be Systemic Lupus Erythematosus (SLE). My relatives recommended I go to CMC Vellore, where I showed all my reports and the various diagnostic tests including Anti Double Stranded (DS) - DNA, C3, C4, Anti Nuclear Antibody (ANA) and other Antibody tests were done. I was formally diagnosed for Lupus there and was asked to consult a Pediatric Rheumatologist and since then am consulting and taking treatment for Lupus. I got diagnosed in a span of 1 year and luckily all my organs are all ok.
Ongoing Symptoms
I get a flare up every year. Most recently, in April 2023, I had fever for more than 10 days and consulted my doctor online. I also had a lot of weakness, no appetite and headache
The triggers can be varied, but the summer and heat affects a lot. Sun exposure of even 2-3 days is very painful and forces me to rest in bed. Winters are also not good for my joint pains. I also had some kind of Raynaud’s syndrome earlier which disappeared with Lupus medication
I was diagnosed with CNS Lupus and had headache, nausea and weakness.
I had to take a break 1 year as the flare up was really bad. I had an episode of pneumonia in 2018 which was very severe and I was not even sure if I would survive. I was in the ICU for 8-9 days in the local hospital.
Earlier, any small episode/ flare up would take more than 2 months to settle down. Now things are a bit better, I get to normal in 10-15 days
I also forget things easily. I read some information and forget it moments later, it just vanishes away. So I try to make a note of anything important.
Treatment
Then when SLE was diagnosed after consulting a Pediatric Rheumatologist in Vellore, I was put on steroids and am having it for 3 years. Now, I am not having steroids . My doctor also recommended a consultant Rheumatologist, who visits Siliguri and am consulting him now.
Was given one dose of Rituximab twice during flare ups.
I was on mycophenolate mofetil, an immunosuppressant. – which was very expensive so I was put on alternative residronate. I also take ferrous fumarate for anemia and folic acid, calcium supplement, tacrolimus 1mg, methylcobalamin, hydroxychloroquin.
In 2018, I had an episode of pneumonia episode and I was prescribed so many medicines that it almost felt like I was having medicines for breakfast!
I have also tried Ayurveda and Homeopathy for managing Lupus but nothing worked. I did not stop my allopathic medicines at any time.
Social and Family support
I teach Maths in school for Class 7-10. Students ask a lot of questions, so I do a lot of preparation, watch videos and prepare for teaching. Standing for a long time is really tough. So I try to sit when I need to. There are some times when I need to take leave from work if there is a flare up.
I was very interested and would take part in sports earlier, but now my activity is restricted due to Lupus and my hip getting affected due to steroids. Also did some sketching earlier to cope but not any more.
I have a very supportive family – mother, father and 2 younger siblings. They helped me in every aspect of my life and even travelled with me to Vellore every 3 months
We did check with the doctor if my siblings will be affected and they suggested to test only if there were any symptoms
I have a small, close group of friends, but the few I have are very helpful. I am also an introvert, so I don’t make many friends.
Medical cost
My father has his own business and we manage the medication through that income and have no insurance either.
Earlier medicines were very expensive INR 700 per strip and ranged around INR 10-12k per month. Almost decided to discontinue MMF. When I raised the cost of medicine issue, my consulting Rheumatologist he suggested me a lower cost option via a company that had a patient assistance program.
Emotional and Psychological impact
I am managing my condition pretty well now, slowly and steadily for about 9-10 years. My mother was very worried earlier on how I would manage life. Relatives are also not very understanding – some even suggested I should not talk about my condition since it will affect my marriage prospects.
I cope with forgetting information by noting down important information, revisiting it and re watching videos I have already seen.
My friends know about me having Lupus, but not everyone knows at the place of work and are only aware that I have a health condition. It is very difficult to explain the details to everyone.
It was my doctor who introduced me to Lupus Trust India, made me part of the WhatsApp group. I have been connected to the founder and the group for the last 1-2 years. I watch their videos and information on the Myths and Facts about Lupus over social media and find it very useful.
Key Message to others with Lupus:
I was a very simple girl, and getting a disease like this is a big thing. It took me around a month to even understand what it was.
All I believe and want to advise is have faith in doctors, consult your Rheumatologist from time to time and trust the medicines. No other medicine can cure SLE.
This is part of a series on Juvenile Lupus in collaboration with Lupus Trust India
