So, your steroid skin treatments aren’t working anymore and you’ve decided to stop them. But now suddenly you’ve got a rash that acts just like a needy ex – annoying, painful and won’t go away? You might have what’s called Topical Steroid Withdrawal… Dr Maguiness helps us to understand more in a Q&A.
Topical Steroid Withdrawal, a very real phenomenon explored by many online, is often experienced after stopping treatments for skin conditions such as eczema.
Dr Maguiness, a dermatologist from the USA, explains how the topic can be controversial in the scientific world.
“There’s no set diagnostic criteria within dermatology for making the diagnosis yet, I think if you ask almost any board-certified dermatologist, they’ll say that they probably have never seen it, myself included.” she said. “Because when you’re a board-certified dermatologist or in my case, pediatric dermatologist, we are using topical steroids very carefully in an indicated manner, so that we don’t run into trouble by using too strong of an agent on areas where it wouldn’t be appropriate for long-term use.”
A quick explainer on the science of steroids
Topical steroids, at the heart of it, are topical anti-inflammatories and have been used for decades with pretty good efficacy, says Dr Maguiness.
They’re often the first line treatment for many inflammatory skin disorders like eczema, psoriasis, and many others.
Read more on psoriasis here: Sophie’s Story
So what are people going through TSW actually experiencing?
“I do believe there’s been a proliferation on social media of people documenting how they quit their steroid ointments and sometimes it’s not clear what type of steroids, how long they were using them.”
“So there’s a lot of unknowns, but they will post their experiences with just complete erythroderma (redness of the skin) head to toe, peeling, yellow crusting of the skin and that’s really hard, because conditions like psoriasis and eczema where you use topical steroids regularly, the underlying condition can also present in that way with the same symptoms.”
“I think then when the skin barrier is so compromised, you can get secondary bacterial infections. So there could actually be a lot more going on with the skin when people are posting these reactions than just terming it topical steroid withdrawal. I think we have a lot more to learn about this condition.”
However, for those who are struggling after stopping steroids, Dr Maguiness suggests seeing a doctor to look for underlying causes.
“Partnering with their doctor and talking about what they’re going through and making a plan to deal with a skin flare with or without the continued use of steroids is really helpful, that doctor patient relationship and the trust is really important.”
“If someone comes in with erythroderma (redness) and crusting, the first thing to do is rule out anything else going on. Is this a flare of the underlying condition? Is it now infected? We would be taking a bacterial culture, making sure they’re not also struggling with an infection. If there’s a desire to calm down the skin, we have many new topical anti-inflammatory molecules that are non-steroidal.”
“These would all be things that we would do initially to try to get the diagnosis and to calm the skin down, without topical steroids, in this case because I’m sure the patient would be wary to use them again, even though I believe probably in the right context, they could be used safely again.”
“We have more tools in our toolbox than we ever did before when dealing with patients who may think they have this problem. What’s really exciting is that we now in dermatology have seen an explosion of new medications which wouldn’t have the same side effects as a broad topical steroid would.”
What can often be thought of as TSW but actually…isn’t?
If you’ve used steroids for a very long time on areas of the body where they’re too potent, or where they shouldn’t have been, and if you withdraw completely abruptly, you may see a big rebound flare.
“I think some people perceive this as the topical steroid withdrawal syndrome. And ultimately, I don’t know if it really matters what you call it. These people are struggling and they need help too.”
What would you recommend for people who want to come off steroids but want to avoid any big flare ups?
“It’s more of a gradual thing. So as the skin is clearing, you use less and less steroids over time. Then you’re bumping up all the other things that support the skin barrier health with respect to eczema, which is daily bathing, application of a fragrance-free hypoallergenic moisturizer, all of those things are really important because, it’s not just the steroid that’s needed to heal and soothe the skin barrier. “
“There are other components there like reducing itch and infection and just the hydration of the skin itself. The four main things that we try to treat altogether are dry skin, inflammation and bacterial superinfection.”
If you think you’re experiencing TSW, it’s best to contact your doctor or a skin professional.
