When I was first prescribed topical steroids, no one informed me about the potential risks and side effects that can come with prolonged use. Like many patients, I was told about skin thinning, but I was never informed about Topical Steroid Withdrawal (TSW), despite it being listed as a potential side effect in the patient information leaflet.

As someone who now suffers from Topical Steroid Withdrawal, I can say firsthand how devastating this condition can be. After repeated prescriptions and prolonged use, I experienced intense burning, widespread redness, relentless itching, open sores, weeping skin and severe sleep disruption. The condition affected every aspect of my life, impacting my physical health, mental wellbeing, confidence, ability to work and quality of life. It is a battle I would not wish upon anyone.

This petition aims to ensure that future patients are fully informed about the potential risks associated with topical steroid use from the very beginning. It also calls for eczema patients to be offered information on trigger identification and non-steroid management options before repeated or long-term steroid prescriptions are issued.

Topical steroids can be an effective treatment and help many people. This petition is not calling for them to be banned. However, patients have a right to understand both the benefits and the risks of any medication they are prescribed so they can make truly informed decisions about their healthcare.

Thousands of patients in the UK report experiencing symptoms consistent with Topical Steroid Withdrawal following prolonged use of topical steroids. Yet many also report that when they raise concerns about withdrawal, they are told it is simply severe or worsening eczema.

This raises an important question: if Topical Steroid Withdrawal is recognised as a potential side effect by the manufacturer, why are so many patients reporting difficulties obtaining recognition, support or assessment/diagnosis for the condition?

I am calling for:

• Clear, standardised information about the risks and side effects of topical steroids, including Topical Steroid Withdrawal, before treatment begins.

• Investigation of potential eczema causes and triggers before repeated or long-term steroid prescriptions are issued.

• Information leaflets containing information on how to manage flare ups such as elimination diets, environment and stress relief 

• Better education and training for healthcare professionals on recognising and supporting patients experiencing symptoms consistent with Topical Steroid Withdrawal.

• Stronger informed consent procedures so patients understand all available treatment options, including non-steroid approaches where appropriate.

Too many eczema patients find themselves trapped in a cycle of flare, prescription, flare, prescription, without ever being offered support to understand what may be driving their condition. Patients deserve more than symptom management alone. They deserve education, investigation, informed consent and access to the full range of treatment options available to them.

No one should discover the potential risks of a medication only after they have experienced them.

Please sign and share this petition to help improve patient safety, strengthen informed consent and ensure that future eczema patients have the information and support they need to make informed choices about their treatment.