by Whitney Johns
Skin flares up, apply medicine. Skin calms down, repeat.
Eczema sufferers know that keeping flare-ups at bay means regular use of prescribed steroid creams on affected areas. It’s a cycle we’ve become accustomed to. But what many of us don’t know is that the treatment cycle has put us at risk for Topical Steroid Withdrawal (TSW), a reactionary skin condition that primary care physicians and dermatologists know hardly anything about. Even worse, some don’t really believe it exists.
A full stop of life
Topical Steroid Withdrawal develops with prolonged use of corticosteroid creams that treat eczema. These could be anything from low-dose over-the-counter to high potency doctor prescribed creams, with the former putting eczema sufferers at higher risk for withdrawal symptoms. TSW symptoms include red or discolored skin that burns, flakes, peels, or weeps. occurring over large swaths of the body.
TSW eczema sufferers live a limited life, missing many work days or are forced to quit altogether due to debilitating symptoms. They often withdraw – no pun intended – socially, and suffer from depression and anxiety.
“When I’m out in public, I have to ‘mask’ because it’s not socially acceptable to be outside and scratching,” states Aby Coulibaly, a 24-year-old musician from Dublin. “So I hold off until I get home, and by that time, it’s very intense.”
Aramidé Onashoga, a woman from London, shared a similar sentiment. “Steroid withdrawal has had a massive impact on my life. I was bed-bound, isolated, I had to leave my job due to a lack of long-term support.”
How much is too much?
Much of the mechanics behind TSW remain a mystery, but what is clear is symptoms occur more frequently with moderate to maximum strength steroid cream use over a long period, without significant breaks in treatment. Unfortunately, this puts eczema sufferers squarely in harm’s way, as many were diagnosed and began steroid cream treatment as children.
Once TSW is established, even short breaks in treatment can induce a reaction far worse than the eczema flare it’s intended to treat. “My body went into TSW within a couple of days,” says Aby. “My skin was just leaking fluid. My arms, my legs, my face and my neck was dry, but plasma was coming out, which is your blood vessels expanding. The less [steroid cream] I use, the more [ticked] off my skin is that I’m not giving it what it wants.”
You’re on your own
One would think the physicians who prescribed steroid creams causing TSW would have a solution, but that’s far from the case. Today, some physicians blame eczema patients for their suffering, stating incorrect use of steroid creams. Some physicians deny its existence altogether, and some do acknowledge there is a problem, but offer no solution.
Treating Eczema (and TSW) in a different way
Fortunately, there are eczema treatment alternatives to steroid creams.
Interleukin (Dupixent) and JAK (Rinvoq) inhibitors are excellent alternatives to steroid creams for eczema treatment. Interleukin inhibitors treat moderate to severe eczema and can be used independently of steroid creams. JAK inhibitors disrupt the body’s immune response that triggers inflammation, a key mechanism behind eczema skin flares. While both have some side effects, skin withdrawal symptoms like TSW are not one of them.
Not interested in switching one medication for another? Another alternative is continuing steroid cream use, with precautions. Work with a physician to create a plan to taper steroid cream use over time, or switch to a reduced strength corticosteroid cream. While it’s tempting to quit steroid cream use cold turkey, the mental and physical ramifications could be more detrimental than beneficial.
Overusing any kind of long-term medication to treat eczema? Alternative therapies like acupuncture or sound therapies are an option. Another option is lifestyle changes and monitoring. Keeping a food journal helps monitor what foods trigger eczema flares. Using alternative laundry detergents and cleaning products with fewer harsh chemicals can also keep eczema symptoms at bay.
TSW is a debilitating symptom of long-term eczema treatment likely no one saw coming, and many of us born before alternative medicines for treatment now bear the brunt of its symptoms. But, the best way to get ahead of TSW is by bringing awareness, like Aramidé and Aby. By sharing TSW experiences and advocating for each other, other eczema sufferers have the chance to possibly avoid this traumatic experience.
