An eczema-fighting childcare teacher has been living with thin skin like a paper that is erased at the slightest touch after giving up her steroid cream for the first time in 20 years.
Remi Tsunashima of Sydney was given topical steroid medication to treat childhood eczema, according to doctors and dermatologists, after she was diagnosed with skin disease at the age of three.
WATCH THE VIDEO Above: Remi details what it’s like to live with TSW
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As her skin got worse as she got older, she was prescribed a stronger treatment until she became worried when the higher potency no longer seemed to work.
Speaking exclusively to 7Life, the 24-year-old says she decided to go “turkey cod” by eliminating all steroids in the hope that her skin would heal on its own without moisture.
But his decision came at an extremely painful cost.
He now suffers from abstinence from topical steroids (TSW), a rare paralyzing skin disease that was triggered after he stopped using the treatment for his eczema.
Remi Tsunashima was left with dry, painful skin after stopping using topical steroid cream. Credit: Remi Tsunashima
According to Healthline, TSW is not well understood, as researchers do not know what percentage of people develop it or why some react this way.
But for Remi, it has been unbearable.
He doesn’t remember a week in his life that he didn’t trust ointments.
“It’s crazy to think I’ve used it for over 20 years; even though I didn’t use it every day, I didn’t have a whole week without using it,” he told 7Life.
“Every time I ran out of steroid creams, I would go to my dermatologist and get more prescriptions so I could continue to use them.
“Over the years, the potency of steroid creams increased more and more as my body built tolerance to the weakest and was no longer effective.”
The 24-year-old now suffers from topical steroid abstinence (TSW). Credit: Remi Tsunashima
Remi began discontinuing treatment in October 2021 after encountering a video of an eczema patient going through the withdrawal of topical steroids.
“It simply came to our notice then. I guess using steroid creams became my lifestyle and it never crossed my mind to stop using them, ”he explains.
‘I was miserable’
“But a few days later, it slowly sank into my mind and I decided to stop using them cold turkey,” he says.
“I did not think he would abstain because he thought there was no way out.
“Well, I was wrong. On the fourth day, I had mild symptoms. I had rashes on my back, arms, stomach, neck, and it dragged me down to my chin.
“Honestly, I felt so miserable. I wasn’t mentally prepared for that.”
WATCH THE VIDEO Below: Remi explains why she stopped using topical steroid cream
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Remi relied on steroid creams for over 20 years. Credit: Remi Tsunashima How is your skin between March and May after quitting topical steroid treatment. Credit: Remi Tsunashima
He noticed that his eczema was starting to get worse to the point that he was suffering immensely.
“I felt worse because I didn’t have visible eczema during all my high school years,” she says.
“Over the years, steroid creams and bleach baths suppressed it and it fooled me into thinking my eczema was cured, just to get me covered in rashes again.”
So he took the ointments again after only four days of cooling his turkey.
“The cream worked pretty quickly and‘ treated ’me with eczema,” he says.
Crucial moment
But she was determined to heal naturally by forcing her body to rely less on creams.
“That made me think, what will happen in the future when I decide to get pregnant? I will definitely have to stop using steroid creams during pregnancy and the idea of going through TSW while I’m pregnant terrified me,” she said. .
“So I decided that what I really needed to do was learn how to do it right.”
She was determined to heal naturally by forcing her body to rely less on creams. Credit: Remi Tsunashima He noticed that his eczema started to get worse to the point that he was suffering immensely. Credit: Remi Tsunashima
From mid-January 2022, the lotion “slowly decreased” from the lowest strength of steroids to the weakest.
A few days after reducing the use of the treatment, he began to experience “mild” symptoms such as redness on certain parts of the face, cracked skin above the lips and red spots on the neck.
“My skin burned”
He says the best way to describe his condition is to have “elephant skin.”
In February, he was taking a “weaker” steroid cream, but noticed that his skin was “hot and extremely itchy.”
“It was very uncomfortable,” Remi tells 7Life.com.au.
“I could barely sleep at night because anything that came in contact with my skin burned, even my clothes or lying on my bed. It burned, but at the same time it was extremely itchy.”
Row two months after quitting topical steroid creams. Credit: Remi Tsunashima As of mid-January 2022, “slowly reduced” steroid burning. Credit: Remi Tsunashima
In March, her body looked “super tight and dry,” leaving her with “hot, burning, itchy, sweaty skin.”
“I had a lot of itching in my arm, but I was trying not to scratch myself. I felt like I was going crazy because of the itch that was hurting me,” he says.
“From the next day, my skin became more scaly. I think I reached my peak of flaking the same month and from there, it became less scaly every day.
No moisture treatment
Remi started the treatment without moisture (NMT), developed by a Japanese dermatologist, which consists of removing all steroids and moisturizer and restricting water intake to 1-1.5 liters per day.
The treatment works by drying the skin and encouraging it to re-create its own moisture.
He knew that his skin would probably get worse before he could improve, but nothing could have prepared him for the months of agony that awaited him.
WATCH THE VIDEO Below are the changes Remi noticed after starting ‘No Moisture’ therapy
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Now after five months, Remi says her skin is still dry, but “not as scaly” as the day NMT started. Credit: Remi Tsunashima
Because of her extremely dry, scaly skin, it is uncomfortable for her to shower because water can sting cracked areas of her body, so she only bathes once every two or three weeks.
“Minimize contact with water as much as I can, so I only wipe my eyes with a damp cloth every morning and only shower once every two or three weeks,” he tells 7Life.
“I use a damp cloth to clean my body every night to maintain good hygiene.”
When she needs to clean her hair, her partner helps her wash it over the bathtub.
“The reason I do this is because my body doesn’t touch the water,” he says.
Most days, she wears cotton t-shirts and sweatpants because they feel comfortable with her skin.
How are your legs between March and May. Credit: Remi Tsunashima As his skin got worse as he got older, he was gradually prescribed a stronger treatment. Credit: Remi Tsunashima
Remi says her skin is still dry, but “not as scaly” as the day NMT started.
“It itches in my arms, but it’s nothing compared to pre-NMT itching,” he says.
“It doesn’t hurt unless I scratch and break my skin. Surprisingly, my back has been very soft and smooth since I started NMT.
“I don’t know exactly why, but maybe because I haven’t used too many steroid creams on my back in the past.”
Remi says she feels “much more comfortable” after doing the treatment without moisture, and that she has been able to sleep better at night.
“Surprisingly, I feel great,” he explains.
“Even though my skin looks like this, I’m sure my health from the inside out is much better compared to before.”
WATCH THE VIDEO Below: Remi shares an update on the condition of her skin
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For those struggling with eczema, Remi says the most important thing that helped her overcome the TSW was “really accepting it.” Credit: Remi Tsunashima
Remi says eliminating things like gluten, dairy, processed foods and refined sugar also helped her skin.
“I’ve been on a gluten-free, dairy-free diet for six months,” he says.
“I try to eat foods high in fiber, fermented foods like miso, kimchi and sauerkraut, so basically eating a well – balanced meal.
“I had the biggest sweet tooth and ate sugary food and junk food. I was so careless with my health, but I was able to learn a lot through the NMT.”
People who suffer from eczema with abstinence from topical steroids can take a couple of months to years for the skin to return to its normal condition.
“Personally, I have a goal to cure all this in a year. I have this strong feeling that I will achieve it,” says Remi.
Accompanied
For those struggling with eczema, Remi says the most important thing that helped her overcome the TSW was “really accepting it.”
“I’ve had eczema from what I can remember and I used to be as ashamed of my skin and blamed it for not being as clear as everyone else’s,” she says.
“But I got to a point in my life where I realized that all this time, my skin and my body were doing their best to heal.
“I feel like my skin is on the right track since I had this mindset change. I sincerely believe that having a positive mindset will attract what you imagine.
“I wish nothing more than a speedy recovery for anyone passing through TSW. You are not …