Is it always best to follow doctors' orders? Aussie eczema-sufferer left with agonising ‘elephant skin' after a decision to stop medications
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Is it always best to follow doctors' orders? Aussie eczema-sufferer left with agonising ‘elephant skin' after a decision to stop medications
There are a few reasons why it is always best to follow doctors’ orders when it comes to medications, even for something as seemingly innocuous as eczema. First and foremost, doctors are trained professionals who have the experience and knowledge to know what medications are best for their patients. Secondly, medications can have serious side effects, and stopping them abruptly can cause those side effects to become worse. Finally, some medications need to be tapered off slowly in order to avoid withdrawal symptoms. Sometimes, stopping the medications without the recommendation from health professionals leads us to regrets… But sometimes, it can be successful!
Here's a story of Remi Tsunashima, a childcare teacher from Sydney who's struggling with eczema.
Ever since the age of 3, she has been taking topical steroid medication to treat her childhood eczema, as advised by doctors and dermatologists, after diagnosis of a skin condition.
As she was growing older, her skin condition also took a turn for the worse. She was progressively prescribed stronger treatments until she believed that the highest potency no longer seemed to work.
She admitted in an interview with 7Life that she went 'cold turkey'— cutting out all the steroids under the hope that her skin will heal on its own without moisture.
Unfortunately, she met the painful cost of her decision.
Source: Remi Tsumashima
According to Healthline, this isn’t well understood as researchers haven't come up yet with the percentage of people who have developed the condition or why they have had these withdrawal symptoms in the first place.
But Remi just couldn’t bear it.
She couldn’t remember a week of her life without relying on the ointments.
‘It’s crazy to think that I had been using it for over 20 years - although I wasn’t using it every single day, I didn’t have a whole week of not using any,’ she said. ‘Every time I ran out of steroid creams, I would go see my dermatologist and he would prescribe me with more so I could continue using them. Over the years, the potency of the steroid creams got higher and higher as my body built a tolerance to the weaker ones and was no longer effective.’.
Source: Remi Tsumashima
‘At first, I didn’t think much of it. I guess using steroid creams became my lifestyle so it didn’t cross my mind to stop using them,’ she explained. ‘But a few days later, it slowly sank into my mind and I decided to stop using them cold turkey,’ she says.
According to her, everything went downhill afterwards.
‘I didn’t think I was going to experience a withdrawal because I thought there was no way I would go through it.’ She said, “Well, I was wrong. By day four, I had mild symptoms. I had rashes on my back, arms, stomach, and neck and they crept up to my chin. I honestly felt so miserable. I wasn’t mentally ready for it.’
Source: Remi Tsumashima
‘It felt worse because I didn’t have visible eczema my whole high school years,’ she mentioned.
‘Over the years the steroid creams and bleach baths were suppressing it and it tricked me into thinking my eczema was cured, only to be covered with rashes again.’
Because of the unwanted results to the extreme reactions of her withdrawal, she got back to using ointments just 4 days after going cold turkey.
‘The cream worked pretty quickly and it ’treated’, she said.
‘This got me thinking, what will happen in the future when I decide to be pregnant? I will definitely need to stop using steroid creams during pregnancy and the thought of going through TSW while pregnant terrified me,’ she mentioned. ‘So I decided I was going to get the withdrawal over and done with.’
Source: Remi Tsumashima
The same results with how her body reacted to her previous adjustments occurred, she began suffering “mild” symptoms like redness on certain parts of her face, cracked skin above her lips, and red patches on her neck.
She even said that the best word to describe her condition was like having an ‘elephant skin’.
In February, she continued going with a weaker steroid cream but noticed that her skin was hot and extremely itchy.
‘It was super uncomfortable, I could barely sleep at night because anything that came in contact with my skin burnt - even clothes, or lying down on my bed. It burnt but was extremely itchy at the same time.’
Source: Remi Tsumashima
‘My arm was so itchy but I was trying not to scratch it. I felt like I was going to go crazy because of how itchy it was,’ she said. ‘From the next day onwards, my skin got flakier. I think I reached my peak of flakiness in that same month and from there, it got less flaky each day.’
She ended up trying the ‘No Moisture Treatment’ (NMT) which involves removing all steroids and moisturisers and lessening the water intake to only 1-1.5 litres a day.
The idea of the treatment was to dry out the skin and encourage it to create its own mechanism to moisturise again.
Because her skin became extremely dry and itchy, it was even uncomfortable for her to shower because the water stung the cracked areas on her body.
‘I minimise contact with water as much as possible so every morning, I just give my eyes a quick wipe with a damp cloth and I only shower once every two to three weeks,’ she shared.
Her husband helped her wash her hair in the bathtub whenever she needed to.
‘The reason I do this is so that my body doesn’t touch the water,’ she said.
Source: Remi Tsumashima
‘It does get itchy on my arms but it's nothing compared to pre-NMT itch,’ she shared. ‘It doesn’t hurt unless I scratch and break my skin. Surprisingly, my back has been very soft and smooth since starting NMT.’
Remi said that NMT made her feel more comfortable as she has been getting better sleep at night.
‘Surprisingly, I feel fantastic,’ she said. ‘Although my skin looks like this, I am confident to say that my health from the inside is so much better compared to before.’
Remi said cutting out things like dairy, gluten, refined sugar and processed foods also helped her skin get better.
‘I’ve been on the gluten and dairy-free diet for six months now,’ she shared. ‘I try to eat foods high in fibre, fermented foods such as miso, kimchi, and sauerkraut - so just basically eating a well-balanced meal.’’
Remy shared a word of hope with everyone suffering from eczema and told them that what helped her overcome TSW was to truly accept it.
‘I’ve had eczema for as long as I can remember and I used to be so ashamed of my skin and blamed it for not being clear like everybody else’s,’ she shared. ‘But I have come to a point in life where I realised that all this time, my skin and body were doing their best to heal. I wish nothing but a speedy recovery for anyone going through TSW. You are not alone.’
To learn more about her journey and find out what will happen next, you can follow her social media accounts: Youtube, TikTok, and Instagram!
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