Debalina, a 25 year old student based in Kolkata, with a delayed diagnosis of Juvenile Lupus, no referral to a Rheumatologist and potentially inadequate treatment plan for 10 long years. She shares her experience of the complexities of this condition and the need for Lupus awareness for timely and appropriate treatment.
Diagnosis & Treatment
I had no specific symptoms till I was 13. Till about 2008, I experienced headache from time to time when exposed to sunlight. Doctors thought I had a bit of a sinus problem but x-ray dismissed the issue. Then in 2011 when I was 13 years, I suffered from recurrent UTI with low grade fever and consulted a GP, who prescribed me antibiotics, but it did not resolve the infection. I then consulted a Urologist who treated me for a month and did all tests including ultrasound, and kidney function tests. Subsequently, I developed swelling in my body, mainly the feet. When I consulted a cardiologist for a second opinion, my BP was high around 165/120. He advised me get admitted to the hospital so more tests could be done. Then I consulted a nephrologist at another hospital who then suggested that I get a kidney biopsy done. The biopsy revealed that I have SLE and Lupus Nephritis class IV, and creatinine was also very high. Many tests were done to confirm the disease and this was in December 2011. I was given high dose of methyl prednisolone 500mg for 3days then put on oral steroid and MMF. I then continued to consult this nephrologist till 2021.
After SLE diagnosis I was treated by the Nephrologist with MMF (Mycophenolate Mofetil) and oral steroid Prednisolone. I was given Azathioprine to try and stop MMF, but the disease relapsed and I had to be put back on MMF. Methyl prednisolone IV infusion was also administered from time to time when disease got active, and proteinuria increased in routine examination of urine.
Protein leakage and blood was always there in my routine examination of urine, Cyclophosphamide (Cyclo) 500mg was also prescribed twice, but then I got infection, my kidneys did not respond, had high fever and shivering with high CRP and got admitted. Then Cyclophosphamide was stopped.
When Cyclo started, my hair was falling, I had bald patches, I had put on a lot of weight, my face was swollen, had tremendous pain on half side of face and muscle pain when I woke up, due high doses of Prednisolone steroid.
I feel that my doctor aimed to safeguard my kidney and not focus on Lupus treatment. I always had protein leakage but the 24 hour protein leakage test was never done by my nephrologist, even though 24 hour protein is the standard protocol for Lupus Nephritis patients. He only did ACR test to check for albumin creatinine ratio levels.
He never explained my disease or medication plan to me clearly and steroids were never stopped - only increased or decreased. In 2021, my Nephrologist did refer me to a junior Rheumatologist when he couldn’t handle my disease anymore. The junior rheumatologist did not do any additional tests and said current treatment was fine.
Once earlier, I had gone to CMC Vellore and consulted another nephrologist there who confirmed my diagnosis and said treatment was ok. No referral was made to a rheumatologist!
During COVID, a friend told me about a senior rheumatologist. I requested him for online consultation, but he needed to see me in person for the first consultation, which wasn’t feasible for me. So he referred me to another reputed Rheumatologist in Kolkata – Dr. Arghya Chattopadhyay.
My new Rheumatologist saw me and wanted to taper off the steroids as this is not a long term solution for Lupus, and also wanted to do kidney biopsy to check the status of the disease.
He actually explained my disease and started treating my Lupus. He believed if the disease is controlled, kidneys would be fine and hence wanted the biopsy to be done again. I requested my old Nephrologist to do the biopsy but he bluntly refused saying it was a waste of time. I found another Nephrologist who did it and reported that my SLE was very much active and my Lupus nephritis class was IV+ V. In the meantime, my new Rheumatologist reduced the steroid, but the protein leakage increased, I couldn’t be prescribed Cyclophosphamide due to my age as it causes ovarian failure hence was given Rituximab but it did not work.
Next flare up was a severe headache and pain in neck area in January 23 and I couldn’t lift my head. I consulted a neurologist who diagnosed it as epidural hematoma, bleeding just beside the muscle of spinal cord. Prednisolone steroid which I was on did not help with the pain, so was put on Dexamethasone IV infusion which caused the pain to subside. Again I had another episode of tremendous pain in my forehead in February 23, was admitted, MRI was done which revealed a subdural hematoma. All over my body there was hematoma without any known injury that could have caused it. Hence APTT (Activated Partial Thromboplastin Clotting Time) was done which was normal. Cause of bleeding was diagnosed thrombocytopenia, which is bleeding due to low platelet count.
Heard about another renowned Rheumatologist from Vachasamrita, the Cofounder of the Lupus Trust India, - Dr. Shenoy from Kochi. I had seen his videos and I wanted to meet him face to face. Another diagnostic test in Kochi - MRV revealed I have a condition called CVST (Cerebral Venous Sinus Thrombosis) which is very rare (only about 4-5 cases reported so far). It causes clot in the vein, sigmoid sinus and internal jugular vein. They did an APLA (AntiPhosphoLipid Antibody) test which turned negative, so can’t treat with anticoagulant because blood thinner would cause more internal bleeding. Hence the clot removal is on hold.
My Lupus disease is in severe state now as inferred by doctors in Kochi, as all the approved therapies were tried but my kidneys did not respond, it seems refractory,. Mainly the root cause – Lupus, had to be controlled. Currently on Cyclophosphamide therapy which is basically a chemo.
Social & Emotional Impact
I have had my ups and downs. I had my ICSE board exams during the initial diagnosis along with treatment challenges. As a student I did not want to think about this disease.
Socially, I could not be active and spend time with my friends like a normal teenager. I didn’t want to meet my friends as the swelling on my face, bald patches and physical changes affected me a lot. They did not want to listen to me talk about my disease all the time. This reduced the number of friends I had over time. Even my closest friends also did not completely understand what Lupus is and how it affects me. I manage it myself and have learnt to console myself.
I did not consult a psychiatrist even though I did have episodes of depression. I believe that nothing is permanent. The same is true of my condition. I have got hope in recent years after I met my new Rheumatologist.
My parents were always supportive and empathetic towards me. My mother is a nurse at SSKM Hospital Kolkata, only hospital in Kolkata which has a Lupus clinic every week. I am actually living for my dreams to come true and my parents and my fiancé. He has been there with me all through.
Progress – Medically & Personally
Initially I did not attempt to learn and search about the disease. My earlier nephrologist never explained anything and we just trusted him blindly believing that what he was doing was right. It was only when I got to my new Rheumatologist, the doctor explained everything in detail nicely, was friendly, patient and cooperative
After 2021, I researched about my disease and tried to understand more. And from my rheumatologist I got to know about a trust called Lupus Initiative Kolkata run by group of Doctors exclusively for Lupus patients. This trust organises patient meet ups, gives medicines at low cost and also gives mental support.
The Lupus Trust India has been a great find, It is founded by young, determined, and resilient Lupus warriors. Vachasamrita, has become a close friend. I watched her story through videos and could relate to her as she suffered like me at a very young age. Am hoping to bring Lupus Trust India to Kolkata if possible.
At the time of diagnosis, I was very upset! But over the years of so many struggles, pain, suffering, I have learnt how to deal with it. Now whatever might happen I know there are doctors who would surely help me get through.
Once I had stopped taking medicines because I was tired of having so many medicines and my reports seemed comparatively normal. As a result, the disease flared up, relapsed.
I have grown more confident, became calm and wise. I am now preparing for my Civil services examination. Baking is my respite from distress, going to library brings calmness in me and reading maintains my mental stability.
Finances/Cost
Lupus is not covered in any Mediclaim so was all done in cash. The insurance got rejected when I got admitted earlier. Fortunately, later on treatment was covered under my mother’s job's health benefit scheme though not every time.
Key Message
Remain calm as nothing is permanent.
There will always be a way to manage Lupus.
Have faith in your rheumatologist.
At low mood times always remind yourself ‘I shall overcome’.
I am currently hoping that if they manage to dissolve my clot, it will be a new innovation in the field of medical science that will help others in future with similar issues.
Want to spread the message and don’t want other patients to go through my experience and commit the same mistakes as I did of not consulting a rheumatologist from the beginning of my diagnosis. This disease needs a Rheumatologist and treatment on time. He should be the primary doctor in the treatment of Lupus and other health issues must be dealt in partnership with the rheumatologist.
