Why are people so scared to stand up and talk about topical steroid withdrawal?
Why is it such a taboo subject? I know you love my rants and this one has been bubbling since last Friday, so I’m warning, I am about to let rip.
Doctors, GPs and dermatologist mostly refuse to even acknowledge TSW even exists and this creates a lot of problems.
I’d like to firstly thank those unicorns, the sympathetic dermatologists, for taking the time to read up, understand and talk about this, because I can count the number on one hand.
What is Topical Steroid Withdrawal (TSW)?
TSW happens when the skin becomes addicted to the topical steroids, needing stronger and stronger potency of cream until there is nothing left to progress to, at which point the skin begins to change, break down and deteriorate and instead of treating irregular flares you become unable to stop using them, but with less and less effect. So basically they stop working. And when you stop using them, because they have stopped working, your skin is x100 times worse than it was to begin with.
It can take anything from months to years to get through TSW, after which you should be back to your original skin and may still have eczema. I am now 3 years and 2 months into my withdrawal journey and have seen so much healing. Currently flaring but there is no going back from this.
Doctors say it’s rare and shouldn’t happen if used correctly
But is it really rare? And what is the correct way to use them because quite frankly I hear so much conflicting information. And more worryingly, I hear that dermatologists dismiss the new NICE guidelines that you should only use them for 1-2 weeks, by saying they are safe to use long term, if you use them right. So who is correct here? Are they safe or are they not? Who is at risk? Everyone or just certain people? And how do we ever move forward with finding out what’s really going and coming up with solutions if we refuse to address the problem.
What if all adult severe and worsening eczema were actually misdiagnosed topical steroid withdrawal?
I’m not trying to scare monger here, I have a very real fear that this is not rare at all.
And as someone who has been to rock bottom with TSW, I feel I have a duty to speak up. I CANNOT sit back and let this just continue to happen to others.
Dermatologists have nothing to replace the topical steroids
I think the main problem is that if topical steroids were taken out of the equation, all doctors have to offer the eczema patient is emollients and moisturisers, patch testing, UVB and allergy tests. There are other new drugs (Immunosuppressants, Biologics and JAK inhibitors) but these are expensive and will not be available to everyone. They are also not long term solutions for everyone and we don’t know the long term effect of these either.
Topical steroids appear to work really well and they work fast too. Within days or a week of using topical steroids eczema can and does heal. But it’s suppressing your body’s natural immune response so when removed, symptoms can return.
Could we be replacing one problem with another?
All the treatments coming along are working by stopping something negative from happening.
But what we fail to do over and over again is work out WHAT is going on? WHY is this happening? What’s causing the reaction or flare up in the first place?
It’s all funded by big pharma
Call me cynical, but some of the new drugs coming on board to treat eczema are very expensive. Someone is making a lot of money and I would love to know how much. I am also interested to learn whether the NHS practises and even our doctors and dermatologists get kick-backs when they sign up a patient on a trial or to use a new drug.
Biologics and JAK inhibitors work in a different way to topical steroids and could promise safer treatment for eczema but they’re so new. I’m too scared to try them.
My dermatologist is so keen for me to give them a go, that this also makes me even more suspicious. Are we all just guinea pigs? It certainly feels that way. If one thing doesn’t work, chuck something else at it.
Even our charities are funded by pharmaceutical companies
This is one that causes me a lot of confusion and I think it’s the reason that the charities set up to support people with atopic dermatitis, eczema, psoriasis etc. are so reticent to talk about TSW. The elephant in the room is there because these charities are mostly funded by the pharmaceutical companies who make the drugs that treat the condition.
One one level this is great because charities such as the National Eczema Society do so much to support people living with eczema. Charities always struggle to get funding so why not get funding from these rich pharmaceutical companies who can afford to put their hands in their pockets?
But there’s a problem, a big one.
Because it feels like these very charities are unable to talk about TSW because if they did they would be biting the hand that feeds them.
Both the NES and BAD issued statements acknowledging TSW but they are very vague and use terms like ‘rare’ and ‘safe if used correctly’.
These charities will always be a step behind if their funding funnel prevents them from being at the forefront of change, understanding and support of people going through topical steroid withdrawal.
If we compare topical steroid addiction to gambling addiction
The big gambling companies have long been funding the addiction rehab centres and programmes that help those who struggle with gambling addiction. Just this month Top NHS clinicians call for ‘addiction levy’ on gambling industry The gambling industry should pay a new multimillion-pound statutory “addiction levy” to fund the prevention and treatment of gambling-related harm, the most senior NHS clinicians treating gambling addiction have said.
However confusingly, this followed news in February 2022 that the NHS to cut all ties with GAMBLEAWARE RET funding. with one statement being, “Our decision has been heavily influenced by patients who have previously expressed concern about using services paid for directly by industry.”
On the one hand surely it seems good that the companies causing the problem be faced with some of the burden of cost that goes to helping people quit their gambling addiction.
But there is a conflict of interest because it means that gambling self perpetuates… we aren’t preventing it from happening, just picking up the pieces afterwards, regardless of the damage done to the people involved and their families and friends.
What is happening to real journalism?
This week also saw Channel 4 pull a segment on topical steroid withdrawal from Packed Lunch with Steph McGovern. I will probably get in trouble for sharing this but I didn’t sign any disclaimer and it’s no secret, that the reasons given were pretty shocking. The Channel 4 lawyers got involved and basically pulled the program because…
- There is no wide stream replacement for topical steroids and we don’t want to scare people
- We can’t say anything bad about the NHS
- We can’t say anything bad about dermatologists, the are following guidelines
I was so upset. It was so far in the planning that I’d checked I could speak about it and started sharing on my social media channels, only to have to go back and remove the posts. Not before huge interest that I then and had to respond to to explain.
Finally I had thought I had a chance to get topical steroid withdrawal discussed live on TV. It would have been so amazing, to be seen and heard and to feel I’m really doing something worthwhile.
And if you read the reasons above they’re so worrying for democracy, freedom of speak and hard hitting journalism, getting to the to the truth. What is really going on here? I’ll address each one in turn.
- We don’t want to scare people? People SHOULD BE SCARED! My God this TSW thing is brutal. This is scary and we all need to STOP, LISTEN and take action. It’s all our responsibilities. People with eczema need to look for the root cause instead of leaping for a magic cure and doctors need to wake up and see what is happening before them. How can they even sleep at night knowing that there is even a small chance of the risk of TSW. Don’t they have a duty of care to know about this? read about it? research it? Acknowledge it and learn how to diagnose it in the patients they treat?
- I love the NHS but it’s not perfect. Nothing is perfect. It probably never will be perfect but what do we learn by burying our heads in the sand? If we never make mistakes we don’t learn. Can’t we all stand together and talk about this? Look at what is happening and find a way of helping the people who are suffering instead of ignoring them, gaslighting them and preventing their voices from being heard?
- Dermatologist need to man up. Do your job. Learn the stuff. You are an expert in skin so be an expert in skin. If you are upset when patients speak up about a condition caused by the treatment you prescribed they so be it. If you can’t handle that maybe you’re not right for the job.
This is all so messed up that the voices of people going through topical steroid withdrawal cannot be heard in case we get complaints and upset people. Since when did journalists worry about that?
Yet Phil and Holly covered topical steroid withdrawal, inviting Dr Chris Steel, an old man and not a specialist in dermatology to comment. How is that right? Sensible? Serving the general public? When this supposed expert states that all topical steroids are completely save, TSW doesn’t exist and it’s just a trend.
I have a lot of respect for Dr Chris Steele but quite honestly, he should be ashamed for voicing such hurtful, incorrect and damaging comments.
Who is brave enough to talk about this?
And who is stopping us from talking about it?
Thank you to the Daily Mail, Metro and Daily Mirror
I would like to thank every magazine and tabloid that has covered TSW, there has been some amazing coverage. You know who you are, the wonderful journalists who work at the Daily Mail, Mirror and Metro. Say what you like about them, they’ve grabbed this story. It might be because it’s click bait and the pictures of our skin are shocking, but they’ve got the story correct in most cases and it’s been amazing to see the condition getting the coverage it deserves.
But not so much in the larger more intellectual newspapers? Why so quiet?
What is the answer?
I really don’t know what the answer is but I will never stop. I won’t stop talking about this until things change.
- I want black box warnings on all eczema topical steroid medication.
- I want diagnosis checklists for doctors and dermatologists to help them diagnose TSW
- I want support and therapy available for those going through it
- I want doctors and dermatologist to acknowledge this condition and stop gaslighting us
- I want research into TSW and what it happens
- I want more research into eczema and what causes it
- I want change and I demand to be heard
Will you stand up and talk about this?
Are you a dermatologist? Explain to me why you refuse to see TSW in front of your eyes?
Channel 4? Why so scared? What’s going on?
Everyone? What do you think? Am I expecting too much?
What can we do?
One thing you can do is join us to march on Saturday 26th March to protest about Topical Steroid Withdrawal.
11am, St Thomas’s Hospital, London, Saturday 26th March.
The march will gather at The Tuckshop Tanner Statue in Archbishop’s Park SE1 7LG, walking past St Thomas’ Hospital Westminster, moving on to the Houses of Parliament and finishing at Downing Street.
You may also be interested in reading:
- Topical Steroid Withdrawal – Frequently Asked Questions
- The system is broken and nothing is changing
- Skin on Fire – Documentary about TSW
- My life through topical steroid withdrawal – new short film