Suffering From Topical Steroid Withdrawal
Our twenties is an exciting period of change. For many, it’s a turning point, moving into new phases of adulting such as university or work. But for 21-year-old Jaslyn, all her plans came to a halt when she experienced a drastic change in her life — a condition known as Topical Steroid Withdrawal (TSW).
You may be wondering: What exactly is TSW? Unfortunately, Jaslyn herself did not know prior to her diagnosis either, as every time she visited a doctor, she was told that she was suffering from chronic eczema. But this condition affected every inch of her skin, resulting in itchy, flared and bleeding scabs from her face and scalp down to her knees and feet.
It was only through online research that Jaslyn eventually realised that she was suffering from TSW. Read on to find out how Jaslyn dealt with the discovery of her condition, her daily struggles and how she refound her self-confidence.
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Growing up with eczema
Jaslyn growing up with childhood eczema
Growing up, Jaslyn’s journey with eczema started at an early age of just 4 years old. It was always very mild, and she would experience red and itchy patches only in her joints or areas with thinner skin. Since her brother also has eczema, Jaslyn didn’t think much about it, and would often treat her skin with topical steroids or antihistamines.
“Eczema is a pretty common skin condition. So even though there were people who asked me, ‘why is your skin like that?’, I didn’t feel much shame about it. It was always on and off, and despite my eczema, I did experience days of clear skin, all the way until I was 17 years old.”
Experiencing localised, red itchy patches
Like every Singaporean student, exam stress is commonplace. Jaslyn explained that during major exams such as O-Levels, she would develop severe eczema in the form of angry rashes. These would also appear whenever she was feeling stressed about issues related to her personal life, leaving her to draw the conclusion that stress was a common trigger of her eczema.
Her go-to treatment? Topical steroid antistamine, which always did the trick to calm her skin down. But when she had a particularly bad flare at 17, her doctor said her eczema became “severe”, and prescribed her prednisone, a form of oral steroid medication to relieve swelling, redness, itching and allergic reactions.
Despite the new medication, her eczema didn’t seem to get better. On two separate occasions, it became so bad that Jaslyn was even given two steroid injections. The doctor then diagnosed her with “chronic eczema”.
Going through steroid withdrawal
Jaslyn’s first signs of TSW on her body
While most of us only had to deal with puberty in our teen years, Jaslyn soon began to notice a lot of other changes with her body — the first being the fact that she now had eczema patches in places that she never had before.
“I experienced this painful burning sensation on my skin, as well as full body redness, shivers and weeping. In hindsight, these were actually signs of my steroid addiction, but neither my doctors nor me could recognise the symptoms yet.”
Before she knew it, Jaslyn was embarking on a long and tiring journey — she went in and out of different doctors, trying to find the right treatment.
“I went to see a TCM for a year, and my treatment would consist of daily customised herbs and creams. But even after a year of taking the medication, it didn’t work for me. So I switched to western medicine and consulted the National Skin Centre (NSC).
The treatment process with them lasted nearly two years. I was prescribed steroid creams along with phototherapy, a process where I had to go inside a machine to shine UV light on my exposed skin.”
Experiencing more serious skin symptoms
Rather than being painful, phototherapy dried out Jaslyn’s skin. She describes the feeling akin to “standing under the sun for too long”, even though each session lasted only around 30 seconds to 2 minutes.
Jaslyn went to NSC twice a week for around two to three months, but she was met with more bad news — her doctor didn’t think that she was improving, but rather, her condition was getting worse.
She was then prescribed a stronger medication — Cyclosporine. FYI, Cyclosporine is a form of immunosuppressant that patients who undergo serious surgeries, such as organ transplant, have to take. This is to make sure that their body doesn’t reject the new organ, yet Jaslyn was taking it for her eczema. The doctors were truly bringing in the big guns at this point.
But taking Cyclosporine came with dangers as well. Jaslyn had to continuously take blood tests to ensure that the medication didn’t damage her liver and kidney, as she was taking it over a span of a year.
The worst side effect wasn’t even on her skin. “My menstrual cycle was badly affected. I had my period for 10 to 12 days a month, sometimes for twice a month, or even longer.” Jaslyn even experienced hair overgrowth, and shared that her upper lip started growing a moustache.
Struggling with daily activities
Eventually, Jaslyn was advised to stop taking Cyclosporine. She was prescribed Dupixent instead, an injection to take twice a month.
But as Jaslyn was still using topical steroid creams and didn’t know she was going through steroid addiction, she didn’t see much improvement. Things got so bad, Jaslyn soon began to lose hope. At this point, even her doctor felt like there was nothing else they could do to help her — a devastating confession that made her feel hopeless.
“I was very weak and uncomfortable. My whole body was affected — the doctor even suggested that I should be warded in the hospital.”
But Jaslyn didn’t take up that advice. Instead, she went to do online research and found out about a condition named Topical Steroid Withdrawal (TSW).
“I saw influencers speaking up about their experience with steroid withdrawal and realised that I was going through the same symptoms. So I officially stopped steroids in October 2022, and sought for a TCM practitioner that recognises steroid withdrawal.”
For those who may be unfamiliar with TSW, it’s a condition that arises from the use of topical steroids to treat a skin problem, such as eczema. This means that when Jaslyn was using steroids to treat her eczema, her body became physically dependent on the steroid. With long-term use, it reaches a point where steroids won’t work to treat eczema anymore. Instead, it will constantly require a stronger medication to cope each time.
Bad flares would come and go every month
“Through research, I found out that there’s a lot of ways to cope with steroid withdrawal. But the main thing that people advise is to just go through it and wait for things to get better. Since it’s a withdrawal, time will make a difference.”
It’s kind of similar to people who are addicted to alcohol — the only way to overcome it? Go through the withdrawal and wait for your body to recover from the addiction.
But going through withdrawal is easier said than done. Jaslyn had to make endless changes to her lifestyle, such as tracking her daily water intake to ensure her skin wouldn’t bloat and changing her diet.
“I really struggled with changing my diet as I’m a food lover. Now, my diet consists of no dairy, no gluten, no soy, no spicy and no processed foods. I usually eat oats, gluten-free bread and bee hoon or rice for my daily meals.”
But that’s not all – physical health also affects mental well-being, and Jaslyn struggled with many more symptoms that affected her daily life, such as insomnia, hair loss, weight loss, nerve pain, and excessive skin shedding.
“Insomnia really messes with my mental health. The fact that I am already going through so much, yet I can’t even sleep at night, makes me feel like I can never take a break. One time, I couldn’t sleep for a week straight. Sometimes it gets better, but every time I go through a skin flare, my insomnia comes back again.”
During the first few months, Jaslyn’s feet were so swollen that she couldn’t even walk. At first, the swelling only began in her legs, but soon it affected her arms and neck too. At her worst, she couldn’t lift her arm to eat.
Simple daily routines, such as taking a shower, became difficult for Jaslyn. “I used to take bathing for granted. With my skin condition, bathing became an extremely painful experience — it feels like acid on skin. While it’s slightly better now, I’m still mentally affected every time I step into the shower.”
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How TSW has affected her self-confidence
Imagine dealing with these struggles by yourself, and then having to also face insecurity from facing society. Jaslyn also experienced a bad case of skin weeping, where the skin produces plasma that escapes the blood vessels and eventually oozes out.
“It was so bad that there was a rotting smell coming from my skin. One time, my brother even told me that he could smell me from outside our house. It was a very traumatic experience for me.”
Jaslyn also had flares on her scalp, so it wasn’t strong enough to hold onto her hair. She ended up shedding a lot of hair, which affected her self confidence a lot.
“I avoid strangers in general because I’m afraid that they’ll think my skin condition is contagious. I just don’t feel like myself, especially on bad days where I feel a lot of pain.”
Simple things that she used to enjoy doing, such as meeting her friends, became tough for Jaslyn to do — “I’m afraid that my skin can react to new environments easily, meaning face-to-face connections put me at risk of another flare.”
Jaslyn would feel guilty for not being present for her friends all the time, even if she’s the one who requires more support. Now, she tracks her healing process over the months, noting down her bad days and good days.
Spreading awareness online
Jaslyn suffering from red sleeves and brittle skin
Despite finally realising that she had TSW, Jaslyn admitted that she was initially in denial. “Many resources online said that TSW is a very rare condition. It made me question myself — do I really have TSW? How is it that I’ve seen so many doctors yet no one was able to diagnose me with this?”
But the relief that she could finally put a finger on her condition led to her eventual acceptance. There’s still a lack of recognition on TSW in Singapore though, so Jaslyn could not consult many doctors for help, and instead relied on the experiences from other people sharing about the journey online.
“Since it took a few years for me to realise I was going through TSW, I didn’t want others to have to go through this painful journey like I did. I also want more people to be aware of what they apply on their skin. Just because it’s a doctor’s prescription, it doesn’t always mean it’s right.”
To help raise awareness about her condition, Jaslyn launched “TSW Awareness By Jas” on Instagram and TikTok. She also hopes to let people who are suffering from TSW know that they are not alone in their journey.
For people affected with TSW like Jaslyn, it’s pretty much like experiencing the pandemic lockdown all over again — isolating alone at home, and not knowing when it will all be over either.
“I know that my appearance isn’t good, and I’ve posted videos where I was in a very bad shape. But I’ve received a lot of positive and encouraging comments that make me feel more motivated to get through this. There are people like me out there, and I’m also glad for those who reached out to me because of my videos. I feel like I can make them feel less vulnerable by validating their experiences.”
What she hopes to achieve
Jaslyn before she started suffering from TSW
Jaslyn also hopes that more dermatologists will watch her videos and be informed about steroid withdrawal. Only with more people coming forward to share their experiences online, then there can be more education and formal diagnosis for patients.
To people out there who may be going through the same struggles as Jaslyn, she wants to continue to spread positivity to them. “Things will get better. When you’re having a bad day, remember that things will always change as it’s part of your body’s process to get through the withdrawal.”
Despite Suffering From Topical Steroid Withdrawal, Jaslyn Reminds Us To Be Kind To Ourselves
As of now, Jaslyn is taking a gap year to rest and recover, aiming to return to school and pursue university this year. While TSW has greatly decreased her quality of life and made her feel like she has lost a big part of her identity, it has also taught her the importance of self-compassion on difficult days.
Towards the end of the interview, Jaslyn confidently tells me with a smile, “I know now that I’m stronger than I think I am.”
All images courtesy of Jaslyn.
Some quotes have been edited for brevity and clarity.
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