On Tuesday 8th March 2022, Topical Steroid Withdrawal was featured in the Health Section of The Daily Mirror in a huge double page spread, this is incredible coverage for the TSW community.
It begins with the best introduction:
“Despite growing evidence that topical steroid withdrawal is a serious problem causing nerve pain and skin problems worse than the condition they are treating, patients are still struggling to get help, discoverers Elizabeth Archer.”
You can read more here:
However, and there is always a but, I have a few issues with the narrative… and want to put a few things straight due to what must have been just misunderstandings.
- NICE guidelines stated steroid creams should only be prescribed for seven to 14 days – the article states this yet doctors and dermatologists allow people with eczema to use for years on repeat prescription and that hasn’t changed since the guidelines were issues.
- MRHA “growing evidence of topical steroid withdrawal reactions if they are used continually for a long time.” This kind of implies that using them often for long periods of time is unusual and somehow the patient misusing the medication. However our doctors and dermatologists allow repeat prescriptions and tell us they are safe for long term use. The new guidelines are out of kilter with the advice we are given. It’s as if the statements were made and updated but the medical profession is continuing as if nothing had changed. This can’t be right.
- …those effects occur very infrequently – this is what gets said about TSW. That it’s rare, but the more I think about it the more I fear that I’ve been going through TSA and rebound withdrawal all my life, since I first started using the steroids and became trapped into the cycle. I seriously do pray that this isn’t the case, maybe some people can use topical steroids to clear up a flare and never need to use them again. But if you are using them regularly, start to analyse the cycles, frequency of flares and any changes in your skin. I do get why it’s discussed as rare because we are only beginning to understand it but there are growing numbers going through TSW and many more deciding they can’t face it.
- In her 40’s Ruth began using a high dose topical steroid cream four times a day and continued for years. This statement is incorrect. I have NEVER applied any TS cream 4 times a day. I may have actually been discussing emollients and the journalist misunderstood. I just want to get that straight right now. I always followed guidance on the pea sized dab of cream to apply an area the size of the palm of your hand. You are now advised to moisturise and wait for 30 minutes for that to soak in before applying topical steroids but who has time for that every day? Some doctors advise the TS first and then wait 30 minutes before applying emollients. Similarly not really something we will do.
- The article mentions my GP often when in actual fact most of my discussions about eczema in later life have been with a dermatologist.
- The article then seems to imply my skin is now clear after six months of Topical steroid withdrawal. Also not true. I’ve been in withdrawal now for 3 years and 2 months and still going. I’ve had long periods, mostly in the summer time of almost clear skin but winter seems to herald rebound flares. So I’m definitely NOT yet over this guys. I’m still healing. But I strongly believe that I will heal.
- The National Eczema Society and British Association of Dermatologists said, some people are allergic to their corticosteroid and it is thought to be the culprit of a preservative or ingredient in the cream rather than the steroid itself – This is bonkers. This is not an allergy. I was patch tested for this supposed preservative and the tests were negative. If this is the case it’s the first I’ve heard. And if this is the case what is being done to change the product to prevent these rebound flares and allergies?
- Stopping topical steroids may also result in rosacea or acne flaring as inflammation in the body is no longer suppressed – Firstly I’m not sure acne and rosacea do flare for those with eczema but please correct me if I’m wrong, but the final part of this statement – no longer suppressed… here in lies the ultimate problem in how we treat eczema in the western world. We suppress it. We don’t look for a cause or a reason for that inflammation. We don’t every try to reduce it by any other means than a band aid approach because we all want a quick fix. WE ALL NEED TO STOP EXPECTING MAGICAL CURES – Let’s look for cause and not leap to topical steroids in future.
- The British Skin Foundation adds – Getting control of TSW problems can take some time and often multidisciplinary approach with primary care, nursing and other colleagues is helpful – What is this they talk of? What actually happens is, we are dismissed without a diagnosis, offered more topical steroid creams, told we are steroid phobic and laughed at. There is no support. Nothing. However a multidisciplinary approach would be incredible, offering guidance on dressing wounds, medication for nerve pain, insomnia, infections. Support from occupational therapists, rehab centres, natural creams on prescription, alternative therapies on prescription. Instead it’s the eye roll and dismissal. I have been offered patch tests and UVB therapy but the test were unhelpful and the therapy isn’t a long term option so only offers short term minimal relief.
- Jennifer’s story of healing from topical steroid withdrawal gives me hope – She is now healed after 15 years using topical steroids for hand eczema. The best bit in the article. Thanks for sharing your story Jennifer.
- The National Eczema Society and British Association of Dermatologists issued a joint statement that TSW was real saying, “symptoms usually occur after excessive use, of using high strength creams frequently for more than 12 months – This is the norm for people eczema. We start with hydrocortisone and when that stops working we need the higher potency creams. What is ‘excessive use’? On a talk this week with a dermatologist he said it was ‘perfectly safe to use Hydrocortisone liberally for as long as you needed to’. Yet I know people in TSW now from only using hydrocortisone, the weakest potency topical steroid, shockingly available over the counter in chemists. You can’t have doctors encouraging use on the one hand, telling us this stuff is safe, letting us have it on repeat prescription and then turning around and saying we over used them. It’s victim blaming and it’s gaslighting. We are ill through no fault of our own and being blamed by the very medical professionals who put us in this position. We trusted doctors to help us get better from eczema and are now left with a condition far worse than what we had to begin with. I am now healing naturally and not taking any time or funds from the NHS. I hope this continues and I can heal in time. Watch this space!
- Andrew Proctor of the NES said, It’s worrying and disappointing to hear people feel concerns were dismissed by their GP – Andrew sadly that’s the norm. Finding someone who has had their concerns taken seriously is almost impossible. I know of a handful who have sympathetic dermatologists. I can’t even get a diagnosis. My dermatologist won’t even entertain the idea and refuses to read the documents, studies and NICE, MRHA and charity statements I give him. This is what happens for all of us. So people stop going. Imagine being laughed at by a specialist. Being told you are wrong, being made to feel small, stupid, ignored, misunderstood. I’ve left many appointments in tears. That is not right, it’s a failing of service for a patient. Dermatologists should have a duty of care to not dismiss any patient concerns and surely they should be up to date on the new findings on a potentially debilitating condition?
- Finally the article recommends new drugs such as tacrolimus, an immuno-suppressant cream which is not a steroid and other alternative treatments. sadly I fear these topical immunosuppressants are just as dangerous, if not more so, yet this is not even being discussed. Surely we have a problem if any medication leaves a patient with a condition far worsened and impossible to manage if they decide to stop using it. If you are given protopic please try to use for a short time and wean off steadily and carefully after a maximum of 6 months.
- We end with a recommendation to ask your GP for a referral to a dermatologist for other treatments – These other treatments also failed me. Methotrexate, an oral immuno-suppressant caused me to have such worsened immune system that I got shingles. And don’t expect your derm to take you seriously. I’d suggest expecting the worst and then you won’t be too disappointed. I sound jaded and cynical but after three years trying to get myself taken seriously I’ve kind of given up with the NHS dermatology system. It has failed me and has nothing to offer except drugs that in my opinion are still experimental, new and also terrifying.
Special thanks for writing this
I want to end on a high point though, the fact that this article was written and is so thorough in exploring the current situation is fantastic. Hearing Jennifer’s story should give anyone contemplating or going through TSW some hope. There are many more out there who have healed.
I would like to thank the Daily Mirror, Elizabeth Archer and Amy Packer for writing this article. We really need to talk about TSW and this coverage is phenomenal. Thank you both.
It’s a brilliant article and packs so much into a double page spread.
Why are they so scared of covering TSW?
As a result of this article being published I was invited to join Steph McGovern on Packed Lunch on Channel 4. Sadly this was pulled at the very last minute by producers who were worried about saying anything negative about the NHS and getting complaints from GPs and dermatologists.
Also because there was concern it could cause panic in eczema patients scared to use topical steroids as currently it’s the main line of treatment, with other alternatives being much more expensive and not available to all.
I do understand the latter concern and hope that topical steroids are safe for most, if used as directed. But to be told that we can’t even discuss the fact that doctors and derms don’t recognise a very real and very serious condition is ridiculous. To feel your truth is being shut down. When is someone going to stand up and admit this? Smacks to me of the strong arm of big pharma, but maybe I’m just being cynical.
They had a dermatologist who was happy to discuss TSW too so it would have a made a great segment and could have helped so many.
This is so disappointing because it doesn’t make sense – why can’t I tell my story? In a country known for its investigative journalism and getting to the truth of subjects what we scared of. In a democracy where we should all have our say, what is the problem here?
The fact that Channel 4 are too scared to air a program about TSW says so much. I plan another blog on that shortly so watch this space.
I’d love to hear from anyone who read this article. What did you think? Do you have eczema or TSW? What’s your experience been?