Disclaimer – I’m a scientist and not a medical doctor. If you have concerns about your treatment, you should definitely discuss that with a medical professional!
As if eczema sufferers didn’t have it bad enough already… now they need to worry that the medication prescribed to treat their condition might actually be making their skin worse! We previously spoke to Jacob, a life-long eczema sufferer, about living with eczema and managing the condition. It’s a complex and chronic disease that can cause all sorts of battles for patients to overcome. The most recent development – people are becoming increasingly aware of Topical Steroid Withdrawal (TSW), where the steroid creams used to treat eczema can have extreme side-effects for some.
What are topical steroids and what’s the problem?
Topical steroids are creams used to reduce inflammation on the skin. They’re frequently prescribed to people with eczema to help reduce the symptoms and manage their condition. Topical steroid addiction, or TSA, can happen with prolonged usage. Your skin gets used to the steroids, so you need stronger and stronger doses to achieve the same effect. Finally, topical steroid withdrawal, often referred to as TSW, occurs when you stop using the steroid cream – resulting in burning, stinging and redness of the affected skin. You only need to type ‘Topical Steroid Withdrawal’ into a google image search to see how severe the symptoms can be. But before you dive into the world wide web, for all the hypochondriacs out there, the hydrocortisone your GP gave you to treat that mysterious rash has NOT caused TSW.
TSW happens in a small subset of people using topical steroids, especially when steroid use is prolonged, high-dose and poorly managed. It’s also important to remember that topical steroids have undeniable benefits – they do a great job of helping eczema patients with their symptoms in the vast majority of cases. As with any medication, it’s a matter of considering whether the risks of the side-effect outweigh the benefits of the treatment, which can only be done when you know the risks… Knowledge is power, as they say. This article is not written to advise what medication you should or shouldn’t use – that’s between patients and their healthcare providers – but TSW is an interesting case of how patients and their use of social media have really got the information out there.
What does social media have to do with using topical steroids?
Until recently, TSW was a relatively unknown concept, even between dermatologists. Withdrawal wasn’t even listed as a possible side-effect of using topical steroids in medical guidelines. It was patients themselves who started to shine a light on this topic. This is a fantastic example of how social networking can hugely improve the awareness of medical conditions and even influence medical research. Due to social media and blog posts about the symptoms some people were experiencing when they stopped using topical steroids, the National Eczema Association became flooded with patient enquiries about the safety of using such products. This caused them to conduct a review of all the research ever published about TSW… and there wasn’t much. Their review, published in the Journal of the American Academy of Dermatology in 2015,1 concluded that TSW probably was a genuine side-effect but that the research done so far was of insufficient quality and quantity. In fact, a 2017 publication in the Journal of the Dermatology Nurses’ Association2 found that there had been no reported research on TSW in children, at all! However, when they turned to social media blogs, they found evidence of multiple children suffering from the condition. The problem with this is that most of the information that is currently available about TSW is from emotive, first-hand accounts, so its easy to get carried away and lose sight of the facts.
So what do we know about TSW?
Currently not a lot. The stories shared on social media can give us an idea of what patients are experiencing, but that kind of anecdotal evidence can’t tell us how likely it is that any given person would experience withdrawal symptoms from using topical steroids, how different treatment regimes affect the chances of suffering from withdrawal, whether some people are at more risk than others, if some steroids are more dangerous than others etc. What we need are clinical studies, and the more we post about TSW and ask about TSW and raise awareness, the better chance we have of those studies being funded… so keep up the good work online TSW community!
In the form of rapid-fire questions, here’s what we do know:
- Why is TSW a problem for people with eczema?
It isn’t exclusively an eczema problem. It could affect anyone who uses topical steroids for a prolonged period. Eczema patients have chronic skin inflammation so they’re commonly prescribed topical steroids.
- When should topical steroids be prescribed to someone with eczema?
When symptoms don’t respond to consistent use of moisturisers/emollients, appropriate antibacterial measures and avoidance of allergens, you should apply topical steroids once or twice a day for up to 14 days (according to the National Eczema Association). Some studies suggest TSW can result from 2 months of steroid usage2 but most cases seem to be when steroids have been used for over a year3.
- Should people on long-term topical steroids be concerned?
If you’ve been using topical steroids for months/years and you’re having to increase the dose to get the same effect, it might be worth talking to your dermatologist about your concerns.
- What’s the chance of getting TSW?
Nobody knows – but remember this side-effect has gone relatively unnoticed for decades – it certainly isn’t common!
- Are some people more at risk of TSW than others?
Long-term and frequent use of topical steroids, using high-dose steroids, use on the face and genitals, being female, and being someone who blushes easily seem to increase your chances.
- How do I know if I have TSW?
Symptoms include burning, stinging, itching and redness of the skin after you stop using the steroid cream. It normally affects face, neck and genitals.
- I think I have TSW, what should I do?
Book an appointment to see your dermatologist. In the meantime, continue with your current treatment regime.
- Can TSW be cured?
This is good news – In pretty much all cases, symptoms of TSW reduce over time once steroid usage has been stopped. Like any addiction, it’ll be unpleasant for a while but there are options that might help, like phototherapy, cooling wet wraps and other supportive care. But just because the TSW symptoms fade with time, unfortunately the same is not necessarily true for any underlying eczema symptoms.
Conclusion
So, unfortunately there is still no cure for eczema but safe and controlled use of topical steroids can be a really successful treatment strategy for managing the condition. In some people (not many – but I don’t have any statistics for you), the prolonged use of high-dose topical steroids can cause the skin to become dependent on the steroids. Once treatment stops, the symptoms of withdrawal might include extremely painful, burning, red skin. These symptoms are very likely to disappear with time, although it might take many months to recover and you’d still be left with the original eczema symptoms. For a more detailed and really practical article about the use of topical steroids in eczema, I highly recommend this article… https://practicaldermatology.com/articles/2019-aug/topical-steroid-withdrawal-in-atopic-dermatitis.