Petition Fund research into Topical Steroid Withdrawal (TSW)

Topical steroid withdrawal (TSW) remains unrecognised as an official condition by the NHS, and sufferers feel they have been misdiagnosed as a result.

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Patients are reporting adverse effects from using topical steroids. More evidence-based research needs to be done to understand this condition and prevent further suffering.

Stories of those suffering and living the reality of TSW can be found here:
https://www.itsan.org/stories-and-photos/

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Government responded

This response was given on 12 May 2022

Adverse reactions from topical steroid withdrawal can occur following long-term or incorrect use of these medicines. The Government welcomes high-quality research to further understand this issue.

Steroids are both natural chemicals produced by the body and manufactured as medicines to treat inflammation. Topical steroids are applied directly to the skin. Corticosteroids are the most common type used to treat skin conditions. Topical corticosteroids are available in several different formats including gels, creams, and ointments.

There are growing reports of withdrawal reactions in people who have stopped using topical steroids. A particularly severe type of topical steroid withdrawal reaction has been reported with skin redness (or a spectrum of colour changes or change in normal skin tone) and a burning, which patients report as worse than the original condition.

The Medicines and Healthcare products Regulatory Agency (MHRA), the government agency responsible for regulating medicines and medical devices in the UK, is unable to estimate the frequency of withdrawal reactions to topical steroids. However, given the number of patients who use topical corticosteroids, the understanding is that these effects occur very infrequently. Although reactions may be infrequent, they can be debilitating and long lasting, and the impact this can have on an individual’s health and mental wellbeing should not be understated.

The MHRA continually reviews the safety of all medicines in the UK and informs healthcare professionals and the public of the latest updates. In September 2021, the MHRA conducted a comprehensive review of the available evidence on topical steroid withdrawal reactions. This review considered side effects reported to the MHRA by patients and healthcare professionals, and information published by researchers and medicines regulators. The review also sought advice from dermatologists and skin charities.

The review concluded that, when used appropriately, topical corticosteroid medicines are safe and effective treatments for skin disorders. It is essential that patients have access to clear advice on the risks of topical steroid withdrawal and feel fully informed on how to safely use these medicines. Safe usage includes using these medicines to only treat certain skin conditions for short periods of time, or with short breaks in treatment over an extended period. Information about these reactions will be added to the product information provided to healthcare professionals and patients. The MHRA has produced materials for patients and healthcare professionals advising on the best way to minimise the risks of adverse reactions and what to do if they occur.

The funding of robust research and scientific evidence is recognised as playing a pivotal role in shaping our understanding of health, and this includes understanding the side effects of medicines. In 2017, the National Institute for Health and Care Research (NIHR) funded a £2 million study to improve the lives of people with eczema. Part of this study will update existing evidence around the safety of topical corticosteroids and develop targeted advice on this medicine for patients and healthcare professionals. The study is due to be completed in 2023.

The NIHR welcomes funding applications for research into any aspect of human health, including topical steroid withdrawal. However, it is not usual practice to ring-fence funds for particular topics or conditions. Applications are subject to peer review and judged in open competition, with awards being made on the basis of the importance of the topic to patients and health and care services, value for money and scientific quality.

Department of Health and Social Care

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