Hello!

I'm Urvashi Singh, and I'm here to share my 7+ year-long lupus journey with you, hoping it'll help generate lupus awareness.
If you or someone you know is dealing with lupus, I hope to make this an inclusive space where you can get non-medical peer support from me and other lupus warriors.

I remember when I was diagnosed with SLE (Systemic Lupus Erythematosus) back in 2018.
The entire team of doctors and medical professionals went above and beyond to look after me, as did my family and loved ones.
However, I felt isolated in my experience because I had yet to find a space to share my experiences, confusions, and rants with fellow lupus warriors.

There's only so much time that a doctor can afford to give to you, given their busy schedules and responsibilities towards other patients.
Owing to our country's long-standing culture of keeping most health conditions hush-hush, a solid lupus community in India is yet to spring up.
In the hope of forming a few ripples in this direction, I bring you my small venture to help spread lupus awareness,
one post at a time,
one run at a time.

What is Lupus?

What causes it?

Lupus is a chronic autoimmune disorder.
Autoimmune disorders occur when the body's defense mechanism or immune system attacks its healthy cells, tissues and organs. There are over 80 known autoimmune disorders (and counting), such as Type I diabetes, Hashimoto's disease, multiple sclerosis, rheumatoid arthritis, etc.
Lupus is one such autoimmune disorder, wherein the body's immune system attacks healthy tissues in various parts of the body.

Symptoms

Excessive fatigue that doesn't go away with rest
Joint pains
Unexplained fever
Facial rash
Skin lesions
Photosensitivity
Headaches
Memory loss
Dry eyes
Chest pain
Shortness of breath
Hair loss
Bluing of fingers and toes when it's cold

The cause of lupus and most autoimmune disorders remains largely unknown. Growing medical research traces genetic susceptibility to autoimmune conditions, along with stress and gut inflammation.

Others argue that heavy metals, certain drugs,
infections such as the Epstein Barr Virus
and deep emotional trauma are strong contributors
of autoimmunity.

Diagnosis

There isn't any particular litmus test for lupus. Rather, it is diagnosed by correlating multiple blood test results with symptoms. Some tests include ANA (Antinuclear Antibody), C3 (Compliment 3), DsDNA (Double Stranded DNA) and other lupus antibody tests. Further, urine analysis and skin / kidney biopsies too help detect the disease.

Prognosis

Every case of lupus is unique in its own way in how it acts out and affects the person. Common medications for lupus include corticosteroids (not to be confused with anabolic steroids), immunosuppressants (Methotrexate, Myclophenolate Mofetil, etc.), HCQS (Hydroxychloroquine) and non-steroidal anti-inflammatory drugs.

Complications

Kidney damage / kidney failure
Strokes / seizures
Anemia
Vasculitis
Lung inflammation
Pneumonia
Cardiovascular diseases
Cardiac arrest
Arthritis
Depression
Pregnancy complications
Anemia
Cancer

Trends

More common amongst women
Typically diagnosed between ages 15 and 45
More rampant amongst people of Hispanic, African and Asian descent.
Elusive to diagnose. Average diagnosis time is 6 years. Often mistaken for other health conditions
Often triggered by UV rays & stress

My Lupus Journey: A Timeline

REMISSION

2018

2019

2020

2021

2022

2023

2024

2025

2018 APRIL

It had been over 6 months that I had been complaining of excessive fatigue and hair loss.
I had also developed pinkish skin lesions on the outer parts of my nose bridge and index finger, so the dermatologist conducted a biopsy of the lesion sample. The throbbing pain that I felt in my finger once the local anesthesia faded out cannot be described in words. I remember getting the dressing changed with the help of a dear friend, who broke down when he saw the wound. I was just too confused to react much to it and soon got busy attending another friend's engagement ceremony in Chandigarh.

"Papular granuloma" seemed inconclusive, and vasculitis was ruled out through a trans oesophageal echo. Several blood tests were conducted, but the results didn't seem to indicate any problem.
I was so exasperated that I tried following a functional diet to help counter the inflammatory symptoms that I had been feeling. The months counting up to April 2018 had been alienating and frustrating, for I knew in my bones that something was wrong, but no one managed to figure out what it was. I might just have come across as a hypochondriac to most of the medics that I consulted at the time in Delhi NCR.

Since this time happened to mark the culmination of a particularly stressful period for me in my personal life, my loved ones suspected a psychological effect of all that stress and emotional trauma to be causing me to feel unwell. So, I went on with my work and prepared for the upcoming summer season in Manali.

Then one April morning, I woke up with a fever measuring up to 103.5 degrees, and debilitating joint pains. My mother, who was with me at the time gave me a paracetamol and called the local doctor. He suspected it to be viral, and prescribed me some antibiotics. Over the next couple of days, the same ordeal repeated itself each day. I'd wake up with a high fever and terrible pains, which would subside by the evening due to the medicines. Only to repeat the following morning.

Seeing no improvement, my mother booked us on a flight to Delhi NCR, and from the airport, we went directly to the general physician's clinic. The initial tests seemed normal, but my excessive joint pains pointed to a strong rheumatological link. So now, we went to the rheumatologist. My father flew in to support me from Jaipur and consoled me that it was nothing but a minor sodium deficiency or something of the like. For parents, their children are often invincible and incapable of falling chronically ill.

The rheumatologist told us that he needed to conduct more extensive tests to rule out autoimmune disorders such as rheumatoid arthritis, multiple sclerosis, and lupus. "We hope it isn't lupus", I remember my parents whispering when we were driving for the follow-up consultation. On the second floor of the hospital, in the doctor's chamber, I remember receiving the news that finally brought some clarity and calm to my recently uprooted life.
"It's SLE", he said. Systemic Lupus Erythematosus. The elaborate words directed my parents and me to just remember it as SLE, or lupus.

Typical to our fight or flight instinct, my father and I awaited the doctor's prescribed plan of action, such that we could leap at it. A short-term dose of corticosteroids and immunosuppressants was prescribed, and in the meantime, my parents sought the advice of a few specialists in Mumbai and Jaipur as well. A millennial in the true sense, I had spent many restless nights seeking answers on Google. WebMD had pointed to lupus a number of times, but now that the more authentic diagnosis had been made, I was turning to Google with more lupus-specific questions. I meant to type, 'how long does lupus take to go into remission'? Instead, Google's morbid algorithms made the first auto fill suggestion: 'how long can a person live with lupus'? *Yikes. Was I going to die? After picturing myself as Naina from Kal Ho Naa Ho, was I actually Aman all this while?*

Two of the most experienced rheumatologists that I had the chance of consulting, one in Mumbai and one in Delhi happened to be colleagues. They both offered me similar advice, and added much semblance to my new life as a lupus warrior. "It is a chronic condition, but it is not the end of your life. Rather, you're young, and you have your entire life ahead of you. So you must master the judicious management of lupus. Don't over estimate it, and don't under estimate it. In other words, be meticulous with your tests and medication. But when all of that is in order, and the disease is in remission, live your life as you normally would, or rather, life it to the fullest!".

Amen to that. By October 2018, my lupus had slid into remission, and my rheumatologist reduced my medication to the minimum dosage possible.

2019 JULY

Since my diagnosis and initial recovery, I gained a new lease on life. I made a conscious decision to become my fittest self post the diagnosis so that I could live my life to the fullest. I heeded to my doctors' advise in that I was meticulous with my periodic blood tests, and everything was going smoothly. I had made overseas travels and driven along the Dalmatian coast with a college friend, and later, made my second expedition to Spiti with my girl gang. It was during this year that I qualified the nationals in trap shooting and became a renowned shot. I picked up the sport during my prognosis, for I was advised against running or playing raquet sports for a bit. Trips to the shooting range became a welcomed outing during my time in Jaipur, and there was no looking back since.

The summer season in Manali had just ended, and I returned to resume my shooting practice in Delhi when my routine tests pointed at an abnormality. Protein was leaking into my urine, and the intervention of a nephrologist was advised. A bright, relatively young but renowned nephrologist in East of Kailash decided on a kidney biopsy, and I had to be admitted overnight to ensure that the clot inflicted by the procedure doesn't travel. All went well, and after ten days or so, the biopsy result was out. Class V Lupus Nephritis, it said.

A common organ involvement amongst lupus patients if of the kidneys. There were six kinds of lupus nephritis, and thankfully, the severity wasn't laid out in chronological order. Class V Lupus Nephritis, also known as membraneous lupus is a less aggressive and more treatable variant. My nephrologist started me on an aggressive dosage of corticosteroids, which carried on for the next five months. The immunosuppressant methotrexate was included one month into the prognosis, and was to be taken for a full course of three years. Aiding these two drugs was HCQS, which was administered to keep the autoimmune activity in check.

Periodic blood and urine tests ensued every few weeks, and by December 2019, the disease had gone into remission once again.

2024 MARCH

I was training for my much-awaited half marathon that I wanted to dedicate to RunforLupus.
I had gone to Khimsar, my ancestral home, to celebrate Diwali with my family, when the ordeal unfolded. An allergic reaction to a chemical called para-phenylenediamine, which is a key in hair dyes and synthetic henna products. Little did I know while applying 'indigo henna' to my tresses that it would result in a life-threatening allergy, which could only be quelled by aggressive medical relief, including steroid injections, tablets and umpteen topical ointments. One would think I am exaggerating if I said that I had developed an 'elephant face', a condition when there is widespread swelling of the scalp and face. The swelling goes to the extremity of temporarily distorting a person's features and altering the hairline. I genuinely struggled to keep my eyes open on the two days when the allergy was at its worst.

Anyhow, my dermatologist fixed it in time but warned me that the allergy had been so severe that it could potentially be a tipping point for my pre-existing autoimmune condition.
She advised that I keep an eye on my lupus-related blood work.

I went on with my life, which had turned hectic with my maternal grandmother falling sick, and being admitted in the ICU for 2 weeks before passing away. After grieving her loss in Jaipur for the rest of the month, I returned to Manali in February. By March, my blood work had been showing a strongly positive ANA, which is often overlooked in isolation. But soon, when my urine was turning foamy, I was certain that a kidney involvement was playing up again.

Further tests confirmed this, but unlike last time, I refused to go in for a biopsy. It seemed like too much of an ordeal to go through at the time, and my nephrologist agreed to give it a pass. The same drill of July 2019 started. Aggressive corticosteroid therapy. Immunosuppressant- a different one this time. Mycophenolate Mofetil (MMF). To serve as my companion for 3 long years, as my ex, methotrexate had. *There's something about the full name and abbreviation of MMF that makes it sound like a mixed martial arts champion. If it were to clash with methotrexate in the arcade, it seems like the apparent winner, no?* Sorry for digressing.

Unlike the first flare, the second and third flares were largely asymptomatic. Without undermining the underlying inflammation and the stakes faced by my kidneys, I'd say that on the surface at least, it was the steroids that posed greater challenges. For those who aren't acquainted with corticosteroids, they are indeed a wonder drug when it comes to fighting inflammation with rapid effect.
However, the amount of synthetic cortisol being pumped into the body also throws several systems out of balance. For example, the initial high doses of the medication make you feel higher than a couple of RedBulls. Your system becomes all jittery and hyper. It demands less sleep, it masks fatigue. Hunger levels go up, making you ravenously hungry, and eventually, fat. Your body begins to retain more water, and even the usual levels of sodium bloat you up like a pufferfish. Facial hair begins to grow (thankfully, I don't have much to begin with), and a hump develops at the back of the neck. The limbs thin down (as do your bones), and the midriff becomes larger. The lipid profile and sugar levels too begin to appear elevated, and despite the efforts to exercise and eat light, there's only so much that one can do under corticosteroids.

The most apparent symptom of prolonged corticosteroids is the moon face, a rounding of the face that is certain to raise many woke questions.

No aunty, I did not gain all this weight due to pizzas or cakes.

No uncle, I did not get stung by a family of bees.

No dude, steam and sauna therapies won't cut it.

I've just got to wait for the medication to complete its course.

And stuff will fall into place itself.

Well, most of it at least.

Another obvious complication of the prognosis is that the immune system is subdued beyond its usual levels. So I became more susceptible to throat ulcers, colds, and worst of all, a gastrointestinal infection that was so painful that I might have given birth to hypothetical triplets. I can't begin to imagine what the cocktail of steroids, MMF, antibiotics, antacids, and paracetamol were doing to my insides. It was a rave party my body didn't ask for!

Sleepless nights, palpitations, and my cheeks speed-dialing on my touch screen became the norm. Then, when my doctor began to taper down the steroids, I was elated, for I knew the finish line couldn't be too far. But the withdrawals that emerge out of the taper routine are a downer that can't be prepared for in advance. You've just got to rest it out and wait for the deadbeat feeling to pass. Once it passes and you feel better, it's time for the taper to continue and you feel like a deadbeat again.

Start. Repeat. Start. Repeat.

60 mg>50mg>40mg>30mg>20mg>15mg>10mg>7.5mg>5mg>2.5mg>0mg.

0 mg!! Yabadabadooooooo!

I literally celebrated the end of my steroid therapy both times, back in 2019 and in 2024. Only this time, I was several kilos heavier, and over all, weighed my heaviest self. My cheerleaders consoled me by saying, well, as long as your kidneys were saved, what were a couple of extra kilos, really? I'd shed them off, and become by old, fit self again. Well, they had a point.

Cut to the present day.

Well, I'm healing, steroid-free, on the martial hunk, MMF, and am on a diet.

God willing, I will soon resume my training for the 10 k's and half marathons.

ARTICLES & NOTES

Corticosteroid Therapy: What to Expect

Lupus and Steroids Lupus, specifically systemic lupus erythematosus (SLE), is an autoimmune disease that can cause inflammation and...

Mar 4, 20251 min read

Contact

Get in Touch

Please feel free to reach out to me if
I can be of additional support to you.

My email id is runforlupus@gmail.com

You can also find me on Instagram via @runforlupus