A Nurse’s Mental and Costly Journey to Treating Her Topical-Steroid Withdrawal
Uma Elmi has been a nurse for over a decade. She’s been in the ER and a travel nurse in the U.K. and the U.S., someone with extensive experience and health-care knowledge who usually knows how to care for her body, until she was met with a multiyear journey to tackle a skin condition she didn’t even know existed. Since childhood, Elmi suffered from eczema, but it was always manageable. When she got to college and her stress levels increased, she would get slightly more intense flare-ups, but she still considered it a moderate case. Her doctors didn’t put her on medication.
In 2019, she got a completely unrelated and unexpected skin condition, folliculitis, a bacterial infection that affects hair follicles. Elmi got it on her face and her skin felt like she had goosebumps and she was prescribed Prednisone, an oral steroid used to treat inflammation and antibiotics. She was on the medication for three weeks and about a week after stopping, she started to notice changes to the texture of her face. “My skin was incredibly cracked and oozing, it started to feel like my skin barrier had disappeared overnight,” she said. Every part of her body was affected, “from my scalp to my biggest toe,” she said. Her skin also started to feel hot to touch, like she leaned against a steamy radiator, not even ice packs could cool it down. It was an eight-to-nine-month roller coaster of trying to figure out what was wrong with her skin, and that roller coaster was only the beginning of a multiyear journey to fixing what she later found out was topical-steroid withdrawal. It was a mental battle that caused Elmi to “completely check out of life” for two years. She wasn’t able to work, leave her house, or have a social life. She lived in complete isolation while she watched herself change in the mirror every day. “I went from having brown skin to my skin appearing black and shiny like leather. Sometimes I could see my flesh underneath my skin in certain areas. I would wake up with the very little clothes that I’m sleeping in glued to my skin from the raw skin oozing, I’d painfully pull them off and cry as I reopened my wounds,” she said. It was a costly trial-and-error journey to fix her skin, one that she says she was “incredibly lucky” to afford because of her years of being a hardworking nurse.
First, she visited a dermatologist and was obsessive about moisture
When Elmi first went to her dermatologist to figure out what was wrong with her skin, she was immediately told that it was severe eczema and that they’d prescribe her topical steroids and if that didn’t work, they’d prescribe her immunosuppressants, a medication that reduces the body’s immune system, which she refers to as “a low-grade chemotherapy.” As a nurse, she was frustrated because she knew it wasn’t eczema. “The way my skin became raw and inflamed essentially overnight was nothing different; I felt gaslit.” But, she knew that sometimes dermatologists don’t know how different skin conditions may show up on different skin tones and types. She refused their way of treating it and decided to use excessive moisture on her skin because “that’s what we’re always told will soothe our skin. When skin is dry, you moisturize it.”
She bought petroleum-jelly-like products and ointments from the U.K. pharmacy and protective products (the equivalent of Vaseline and Aquaphor in the U.S.) and she slathered them on for about four months. But her skin would only get worse and more irritated. She continued because she thought after the first few months the pain would subside as the moisture seeped in, but it didn’t.
Verdict: The products were bringing her more pain. She was desperately buying whatever she could that she thought would heal her, but it didn’t.
Price: $100
Then she tried a water fast and incorporated supplements
She found someone online who had a similar experience to hers who went on a water fast that helped heal their skin. Elmi was desperate to try anything at this point, so she tried it. “I didn’t eat anything and only drank water for seven to ten days at a time, it was incredibly hard, but when you’re in survival mode, your body can become capable of a lot.” After the ten-day fasts she would return to eating for a week and go back on the fast. She did that for two months. By the seventh day of her first fast, she felt a minor reduction in the inflammation on her skin. It started to make her slightly paranoid about what she was putting in her body because she couldn’t pinpoint what was making it better or worse.
During this time, she started incorporating supplements too. “I spent around £200 per month on supplements — it was a money pit.” She was taking everything from magnesium to bone-broth paste to electrolytes, but she couldn’t pinpoint if anything was actually working.
Verdict: The fast wasn’t a fix, but it gave her “small bouts of relief” and hope that there’s something out there that can help her — she just had to keep researching.
Price: ~$260/month
She attempted medical-grade red-light therapy
During the six months of her moisture treatments and the water fasting, she was still going to see different doctors to get multiple opinions, but no one could figure out what was wrong. So she decided to try to heal herself. But, before she refused to go to any more appointments, they suggested trying hospital-grade red-light therapy to reduce inflammation and help heal the eczema (they were still treating her as a severe eczema patient). She did the sessions twice a week for a month. It was an intense red light, so she’d have to be naked with fully dry skin so the light can penetrate. Her dermatologist had her go in for sessions under a minute, usually 45 to 50 seconds because the light therapy was too powerful for anything longer.
Verdict: After a month, she didn’t see or feel a difference so she stopped so she could refocus her energy on researching the next thing in her trial-and-error journey.
Price: This was covered by medical insurance in the U.K.
She combined at-home red-light therapy with no-moisture therapy
Her research led her to TikTok, where she would be searching for severe eczema patients because that’s what she was being told. “I hadn’t seen anyone online with my color skin or any melanated skin tones, only white skin and skin and it presents slightly differently. I wanted to find someone who looked like me.” She didn’t find that but stumbled across a page that she says saved her, TSW Kidd, a guy who made a video saying that people are confusing TSW with eczema. Similar to Elmi, his doctors were telling him he had severe eczema and he later found out he had TSW, he had an at-home Helios red-light-therapy panel that helped his skin. He also shared other people’s TSW diagnoses and what helped them. “His page became a hub for fast-tracking my research process, because I got to see different people using different techniques that worked for them.”
Now that she knew of TSW, she found a Japanese dermatologist, Dr. Kenji Sato, who specializes in TSW care. “His research says that for the skin barrier to heal, it needs to purge and get rid of everything it has in it. It’s inflamed because it’s angry and the more you add to the barrier, the more inflamed it becomes,” she said. He created something called no-moisture therapy, completely ceasing the use of moisture on her body. She was allowed to shower just once a week and to not apply anything topically. “I combined that with the red-light therapy and it was like somebody had flipped the switch that accelerated my skin healing.” Within weeks, what felt like an overnight process after Elmi’s almost yearlong journey, she started to look like herself again and her skin was feeling better.
Verdict: She used the red-light-therapy panel for about an hour a day, 15 minutes for each body part, and it became her morning routine.
Price: £400 (~$525) for the red-light-therapy panel
Finally, she incorporated cryotherapy, too
After one month of consistent NMT and daily red-light therapy, she found what she calls “the last piece to my puzzle”: cryotherapy. “Each one tackles a different thing. The no-moisture helped my skin barrier repair itself by not applying anything else to make it angry so it can focus on healing itself, the red light reduced the inflammation helping to ease the pain and cause less cracks to form on my skin and the cryotherapy increases circulation, and it pushes blood flow to the top layer of the skin so it really helped fast track any healing. And on top of that, it’s soothing. When my skin was inflamed, warm, hot, sore, it craved the numbness feeling of just walking into a cryo chamber.”
Verdict: She doesn’t consider cryotherapy alone to be the magic experience that healed her skin, but the trifecta of this, the red light, and the NMT. She did four sessions of cryotherapy a week and started using the clinic’s red-light therapy as well for three sessions a week. She continued that for six months and would slowly reduce her frequency as she got better.
Price: Cryotherapy was £150/week (~$200) and red-light therapy was £135/week (~$180). $9,120 for six months.
How she’s maintaining her skin now
If Elmi gets a flare-up now, they’re always small and she knows how to treat them. It’s normally just the back of her neck, tops of her wrists, and behind her knees if her shower is too hot or if she’s eating too much processed food, so she’s mastered gut health. Her journey even inspired her to open her own studio to give nurse-led skin treatments.
She’s eliminated all scented products from her routine, including cleaning products and body products with the exception of two shower products she loves: Nécessaire’s eucalyptus bodywash because it’s non-irritating and Lush’s body conditioner, a natural cocoa-butter balm to protect the skin’s barrier. She also takes baths with Dead Sea salt to help nourish her skin when it’s dry.
Nécessaire The Body Wash Eucalyptus
Lush Ro’s Argan Body Conditioner
Minera Fine Grain Dead Sea Salt
For her skin, she’s been leaning on her K-beauty products because of how gentle they are while still helping her achieve her goal of having healthy and glowy skin. “I’ve tried all the luxury brands and all the drugstore brands, nothing has worked on my skin like my current routine.”
Haruharu Wonder Black Rice Moisture Cleansing Oil
TIRTIR Milk Skin Toner
SEOUL 1988 Snail Mucin
Rejuran Turnover Ampoule c-PDRN Face Serum
SEOUL 1988 Retinal Serum
Haruharu Wonder Centella Phyto & 5 Peptide Concentrate Cream
Verdict: This is working for her, but she also manages with diet and red-light therapy.
Price: $172