Our campaign
Scratch That is a patient advocacy group campaigning for recognition of a condition called Topical Steroid Withdrawal.
This condition is not currently recognised by medical professionals so sufferers aren’t getting the help they need.
What is Topical Steroid
Withdrawal?
‘Topical Steroid Withdrawal’ (TSW) is believed to be an iatrogenic condition, meaning it is caused by medication.
It is understood that TSW is a response to the cessation of the use of topical steroids. It is unclear as to why this reaction is happening in some patients.
Topical steroids are anti-inflammatory prescription creams commonly used to treat skin conditions such as eczema.
Topical Steroid Addiction (TSA) and the subsequent withdrawal (TSW) can be so debilitating, it can put one’s physical and mental health at serious risk. Many sufferers become seriously ill, causing them to lose their independence and reducing their quality of life.
Things need to change.
TSA is not currently recognised by the NHS, therefore topical steroids continue to be over prescribed and over-used. without proper recognition, this condition cannot be prevented, diagnosed or treated.
This means that thousands of patients across the UK are suffering needlessly and are not getting the required support from healthcare professionals.
Without medical support, sufferers resort to the internet for advice, often getting inundated by misinformation and pseudoscience. They have nowhere to go and our community want to change this.
What do we want to achieve?
Our ultimate goal is to eradicate Topical Steroid Addiction because it is 100% preventable. In order to achieve our goal we must educate patients, doctors and dermatologists of the true consequences of long term steroid use.
In the meantime we have set up this online resource of all the most important information to help educate the public and provide an accessible support platform for sufferers.
Original founders: Holly, Hannah, Harriet, Lou and Laurie
Who are we?
Scratch That was set up by a group of five friends from the UK who met through their mutual struggle with their skin.
They are all currently going through Topical Steroid Withdrawal and want to create an inclusive central hub for the TSW community in the UK.
Meet the Team
Holly
Holly helped to set up Scratch That with the original team. She is a graphic designer – having designed this website, all our Instagram posts, among other resources.
Harriet
Harriet is also part of the original team. She works for another charity full time and acts as a spokesperson, copywriter and content creator for Scratch That.
Farhan
Farhan recently joined the team in 2021. Being a pharmacist, he brings with him a wealth of knowledge on the way the medical industry operates, helping us keep a targeted and focused approach.
Hollie
Hollie is also a new addition to the team, joining at the same time as Farhan. Hollie has the same values and passion as the rest of the team so is a perfect fit. She also helps keep us all organised!
Our aims
Awareness
Increase awareness of topical steroid addiction and withdrawalfor the general public and medical profession.
Research
Secure funding for a large scale study into topical steroid addiction.
Education
Provide useful information and support in an accessible online resource hub.
Recognition
Get topical steroid addiction officially recognised and diagnosed by medical professionals.
Treatment
Find the most effective treatment to help patients recover as quickly as possible from TSA.
Prevention
To influence change in the way skin conditions are managed in order to prevent this conditionfrom occurring.
Our beliefs
Topical Steroid Addiction is not our fault. All of us were following the instructions of our GPs or dermatologists.
Topical steroids should be prescribed with much clearer instructions regarding their appropriate use; such as how much to use, where to apply, when to stop use, and the risks involved.
Patients are not being given the full amount of information regarding the long term use of steroids.
Steroids should not be used long term for the management of any skin issue.
- The prescription of topical steroids should be much more controlled. Currently any GP can prescribe the strongest potency topical steroid in large tubes.
Neither GPs nor dermatologists currently have a full understanding of the harm the long term use of topical steroids can cause. This is because the idea that the skin can become dependent on steroids is not widely accepted. This needs to change.
Topical Steroid Addiction and Topical Steroid Withdrawal are separate conditions from eczema (Atopic Dermatitis) and should not be diagnosed as such. A patient with TSA should be treated differently to one with eczema.
Many things can help with the symptoms, but the only thing that is currently known to ‘cure’ TSW is to withdraw from steroids and cease their use. Healing cannot knowingly be attributed to anything else since this is a drug dependency.
- As long as the medical community refuses to believe that TSA is a real condition, patients will continue to be neglected, improperly treated and ignored. This leads to much bigger problems involving patients rejecting modern medicine and siding with pseudoscience which can be incredibly harmful.
We are not anti-medicine or anti-steroid. We are just highlighting a long term issue with a commonly used medicine which is apparently being ignored. Being scientific means being able to accept new information when evidence comes to light, and to understand when you are wrong or misinformed. Steroids of course do have their place within modern medicine. They are wonder drugs and they do work short term. However we do not believe that steroids should ever be used as a long term solution for chronic skin conditions.
Patient experiences
I was never happy using steroids on my skin, worrying about skin thinning, and always used them sparingly, so when I began to realise that my skin was becoming completely dependent on them I started to worry.
The steroids no longer worked as effectively, I had to use them almost daily to keep control and needed stronger doses. It was also around this time that someone commented on my blog that they thought I had TSW. I’d never heard of it before, but now, after lots of research I am 18 months through withdrawal and healing slowly.
After suffering an infection on my face, my doctors prescribed me topical steroids being advised it was eczema.
I soon realised the only way to treat the problems were with steroid creams and when the “eczema” didn’t go, more potent steroids came my way. Months of this led to severe rashes spreading to untreated areas. Not dry as eczema but red, inflamed and an itch that words cannot describe, was this still eczema? If I stopped using the creams, red rashes, thin skin and a bone deep itch, followed by intense skin shedding and yellow oozing.
Five years later, and as of March 2020 the withdrawal began to free not just my skin, but my mind, sanity and health.
Back in 2018 I started experiencing facial rashes (I never had eczema there before). Saw a GP who prescribed oral prednisone & the derm went onto desonide, protopic & other potent steroids.
Nothing worked to clear it and kept returning worse to a point I could not sleep or function. My skin burned and looked raw – that’s when I knew this was not normal or eczema anymore.
I have used steroids for as long as can remember from childhood. I remember lots of different creams with different names. I just thought it was normal for me and part of my daily routine.
I usually stuck to Betnovate as it worked best but now I know it was because of how seriously powerful and dangerous it was. It got to the point where I was putting it almost everywhere on my body daily after showers. If I didn’t I would feel panic instantly.
This is when I knew it wasn’t eczema it was an addiction my body had to steriods.
I went from using hydrocortisone to being prescribed dermovate (very potent) and even that wasn’t helping my skin. The rashes were different to my normal eczema and were spreading to previously healthy skin. My life was being affected by my skin like it never had been before, from occasional breakouts to constant trouble.
I started off with fairly strong steroids and they just got stronger as my eczema spread over my body and got worse. I knew it wasn’t eczema anymore when it came back worse the day after I applied the creams and I was kept up all night by the itching.
I had been prescribed steroids on and off for almost 10 years, it helped my eczema for the short run but soon as I stopped applying it, my skin would come back with a vengeance almost, I noticed my skin started burning when applying it also so I took myself off them, the way my skin reacted to coming off them, I knew it wasn’t eczema anymore.
I was first prescribed hydrocortisone when I was 11, 30 years ago. Doctors didn’t know then I was allergic to petroleum and crest toothpaste.
Over the years I was given stronger creams and then prednisone. Eventually I got patch tests, which diagnosed the petroleum and paraffin allergy. The creams they gave me had this in so I was worse off. By this time my skin was damaged from 10 years of steroid use.
Doctors finally found another hydrocortisone cream that didn’t contain any and then prescribed this to me and gave me on repeat for 30 years.
Fast forward to age 41 and I hadn’t used the cream for a few weeks and came out in a red rash. Wasn’t like eczema. It looked like I had smothered ribena all over and round my mouth! More steroids took it away including oral but as soon as the course was finished it would come back. My skin was burning, raw and the itch was non stop. It was at this point I knew this wasn’t eczema and stumbled across Topical Steroid Withdrawal in an eczema support group.
It was back then I took action. To think all this could have been avoided.
I was given cortisone at 4 years old for asthma and suffered from it until 13. When I was 15 I developed eczema. They always told me that eczema was incurable and they always gave me steroids.
In 2018, after 11 years of eczema and steroids, I started to have a strange rash that spread all over my body and the doctors prescribed Elocon and Protopic for 6 months, then Fucicort and Protopic for another 6 months.
After 9 months my body went in full redness and steroids stopped working. I knew it was not eczema because it was burning, I was freezing cold and had insomnia, I started oozing and had other awful symptoms. I found out about Topical Steroid Withdrawal and I realised I was suffering from it.
I got to a stage where I was experimenting with hundreds of moisturisers and nothing worked only my ‘trusted steroids’. The rashes were spreading and I knew this wasn’t right! I googled ‘why does my eczema keep flaring’ and the first thing that came up was ITSAN and the rest is history! 2 and a half years in and I’m starting to see amazing skin again.
I have been using steroids for years.
In January my skin flared up all over my body with a red angry rash. I was prescribed a course of prednisone and fucibet which calmed it but as soon as I stopped it blew up again, I was then prescribed a longer course of prednisone and fucibet / betnovate same thing happened again.
I continued applying betnovate as instructed for months and in September was told by a NHS dermatologist to apply betnovate, eumovate and hydrocortisone everyday as an emollient (30 tubes a month) despite me telling her I felt the steroid was irritating the rash more.
This week I broke down crying to my GP explaining I have TSW symptoms and was advised to give steroids another go! I am now in excruciating pain and realising this is definitely TSW.
For over ten years, I used steroids to treat my ‘incurable eczema’, which only appeared to be getting worse every time I stopped using them. I thought I would have to use steroids for the rest of my life, until I found the answer I had been waiting years to find.
Over 20 years of being prescribed steroids. From stronger creams to oral steroids. When I could no longer control my “Eczema” they gave me a steroid injection. The creams were prescribed in stronger doses, ‘til one day my skin stopped responding with the treatments. My skin was getting progressively worse. 30 days of prednisone cleared me up but once I stopped them, the rebound was aggressive, angry, full blown red, burning, shedding skin, ooze and no body temperature control. This was not eczema anymore, I told myself over and over again, after being told I have severe eczema. Thanks to the TSW community and ITSAN I am now a TSW warrior.
Once the efficacy of my prescription/OTC topical steroids had stopped working, I saw a dermatologist who prescribed a much more potent steroid, ‘betamethasone’- which cleared my skin entirely for about a year. But, immediately after I ceased using it, all my skin issues came back with a vengeance, in areas I’d never been troubled by eczema before.
The reaction to stopping the application of steroids was immediate. The entirety of my body became inflamed, looking as if I’d spent too much time in the sun, and it felt as if I had to. My skin had become atrophied and extremely tight, swiftly followed by oozing, cracking and eventually peeling off.
My eczema when I was younger only existed in the typical areas of the body – the neck, creases of my arms and legs. But after stopping the steroids, the result was systemic, I was now covered head to toe in a disturbing variety of skin malfunctions, and I knew then, that this is not eczema.
I was given TS by a pharmacist without warnings and explanations. I developed TSW after quitting 4 months later but I didn’t knew what it was at that time.
The dermatologist misdiagnosed me and prescribed me more topical steroids which I used for another 4 months and by the time, I’d flare even if I used it twice a day. It went out of control and I acknowledged it was TSW and immediately stopped the use of TS.
Used steroids for 22 years. They stopped working, would be given stronger ones. Caused itching, burning raised spreading patches. Eczema got worse and worse until I repeatedly ended up in A+E multiple times. It obviously wasn’t eczema anymore. Covered 60% of my body. Felt like it would keep getting worse until I was dead. Horrific.