Hello, and welcome to this Skin Deep podcast, where we look at skin-related issues, conditions, and treatments in an interesting and informative way. I'm Dr Roger Henderson. I've been a doctor in the NHS for almost 40 years and I've got a long-standing interest in dermatology. And I'm Dr George Moncrieff. I was also a GP, although I've now retired from my practice. I'm a primary care advisor to the National Eczema Society and the former Chair of the Dermatology Council for England.
This is the second of two podcasts we're doing about topical steroids and if you were with us for the first, we do hope you found it helpful. But this time we're going to be looking at Topical Steroid Withdrawal and some of the potential problems associated with this. In addition, George and I are absolutely delighted to be joined by our special guest for this episode, Briana Banos.
Briana is an amazing individual with an incredible journey involving topical steroids and she'll help us understand the patient's perspective of Topical Steroid Withdrawal. Now I'm just wondering, George, some people listening will be thinking, "well I've never heard of Topical Steroid Withdrawal and this must be something new", but I think we both know that it's far from new, isn't it? Absolutely, it's not a new condition at all.
Although it does appear that we are recognising Topical Steroid Withdrawal Syndrome more frequently nowadays. It was first discussed back in 1973, would you have it, that's 50 years ago. Then in 1979, a couple of very impressive dermatologists coined the term Topical Steroid Addiction for the same thing really. Typically patients with this condition find that their steroid treatment starts to work less effectively.
Understandably, that initially encourages them to start using it more or using a stronger topical steroid. But things continue to deteriorate. The topical steroid is exhibiting what doctors call tachyphylaxis. This is where treatment starts to work less effectively and that's a feature of true addiction.
And thinking about it starting, then, does it usually come on just when it's stopped or can it develop, sort of, during treatment, between treatments, or how long might people be using their steroids before this starts to develop? It's hugely variable. It's remarkably variable. Sometimes, as you say, it starts after years of successfully using a topical steroid, and then suddenly the patient runs into problems. Other times, it can come on within just a couple of weeks of starting one.
But it's a very debilitating condition and, as you say, it can come on between treatments or even during treatment. And to anyone thinking, "well, I'm, I'm probably the only person I know that's suffering from this condition". How common do we think it may be out there in the real world? Well you're almost certainly not on your own. Studies recently have confirmed that it is hugely under-recognised and have demonstrated that it's pretty common really.
Affecting just over 10% of people who use a topical steroid. Admittedly that means that nearly 90% of people using a topical steroid have no problems, whatsoever, which is great news for them. This is under-recognised and underdiagnosed. Yeah, it's a lot of people potentially still. I'm going to take a punt here and suggest that when we start to drill down into what's causing Topical Steroid Withdrawal actually in the skin, uh, we like to think we know everything.
I suspect we know very little about this. That is just a punt, but have I gambled that one right? You have indeed. Yeah. If only we knew what was going on. In the last podcast, we described how topical steroids actually weaken the skin barrier. And it may be that people whose skin barrier is more vulnerable, are more vulnerable to getting this. But furthermore, when we measure how strong a topical steroid is, we use a surrogate marker.
We measure how much it makes the skin go white by constricting the blood vessels. The very small arteries are constricted by topical steroids and we use that as a marker. How long it lasts and how severe it is. As we all know, facial skin has considerable capacity to vary its blood supply. For example, some people when they're stressed or emotionally upset, their face goes red, [they] have a facial flush. And that tendency to flushing and blushing is very individual.
And I just wonder, this hasn't been confirmed, but I just wonder whether something similar might be going on here. That a topical steroid for some reason has triggered some instability in the normal control of the blood flow to the skin on the face, for example, or the skin wherever it occurs. And that's what's going on here. So what we see in the very early stages of this problem, the skin becomes bright red. Looking and patients saying feeling like severe sunburn.
And this can be extremely unpleasant with intractable itch and a burning pain which can be so severe, that even washing with plain water is unbearable. Can you imagine that? The thought of applying a simple moisturiser, an emollient, is untenable for these individuals. And this is called the Red Skin Syndrome. The changes that you see in the skin can extend beyond the area of skin that was previously treated with the topical steroid.
And these dilated blood vessels, when you dilate a blood vessel, it can become leaky. Molecules escape into the tissues and take with them some fluid. So you get some swelling around the ankles or the face. If it affects the face, can become really disfigured from swelling around the eyes, completely changing how somebody looks. And with this all, thermoregulation, the ability to keep your core temperature right by controlling the blood flow to the skin, for example, that goes AWOL.
And results in patients, with this, feeling too cold or too hot and being unable to control that. Hardly surprisingly, sleep is disrupted dreadfully. Many experience extreme fatigue, partly due to that disturbed sleep. Hardly surprisingly again, they go on to get emotional fluctuations. And when it's severe can go on to develop severe depression and anxiety. At this stage, Topical Steroid Withdrawal Syndrome can look a bit like eczema.
And it's easy to understand how so many physicians seeing this come to the conclusion that the problem is that the patient isn't using enough topical steroid. And if only they would listen to our advice and take more treatment, their condition would get better. But if this is what's going on, that would be a disaster. And as if that's not unpleasant enough, it then can progress on to more severe patterns, with lumps in the skin, massive flaking of the skin.
To give you some idea of how severe that is, it's often called, snowing. It just describes how marked that loss of skin can be. They can develop deep, painful cracks in the skin, and dramatic crusting. This is not infected eczema and antibiotics generally don't help here and it's different from eczema relapses. For a start, it involves a wider area of skin than the area that was being treated. I have seen cases where it's looked far worse than the worst cases of eczema I've ever seen.
And I almost hesitate to say this because this is so unfortunate and a little depressing if I'm honest. I have no doubt that there will be many people with Topical Steroid Withdrawal, who look like that [and] go along to their healthcare professional. Healthcare professional looks in the notes, they have eczema, "ah, fine, let's treat the eczema, let's hit it harder". They double down on their steroids, and you are just hosing down that fire with petrol and that's a terrible thing to imagine.
I think that's one of the biggest problems for patients with this. Until recently our profession has been remarkably reluctant to acknowledge it even exists. And as a result, it's not diagnosed. In their book, it remains rare because it wasn't diagnosed. It doesn't mean it wasn't there, but in their eyes, it doesn't exist. So it's not taught. I'm not sure about you, but I was never taught about this.
Even though it was described, 50 years ago, and it's not considered in the differential diagnosis. So the cycle goes on and the problem is repeatedly dismissed. Can you imagine how grim it must be to have an extremely painful, bright red face that goes on to become cracked, crusty, swollen, and severely disfigured? And to have doctors blame you for the fact that you're not treating it with what they're recommending, which you know is going to make it worse.
Yeah, I can't, and in a way I don't want to. It's awful. Does it have a predilection for any particular parts of the body, by the way? Yes it does. It usually involves the head and neck, or can involve the genitalia. I've never actually seen it on the palms or the soles of the feet, but it extends beyond the areas that are treated. So you can often go down to the wrists and on the arms and down the legs and on the body. It typically occurs in young people, including little children.
But it's most common for some reason in women in their, sort of, 20 to 30 year age group. And once you've got it, it can last for months or even years after you've managed to come off the topical steroid. And during those years, you can have unpredictable flares brought on by a whole variety of different circumstances. So it's the unpredictability and the severity of it that can be so disabling.
And I'm guessing, obviously, it does depend partly on the strength of the topical steroids that are being used. If you're using a very strong topical steroid, you're more likely to fire it up. But I also wonder whether if you're using a milder, topical steroid, which are very commonly used, if you're using those for longer than perhaps may be sensible, again, that can fire it up too. You're absolutely right. Yep. The potent topical steroids are the greatest risk.
But as you say, because we use so much more mild topical steroids, in my experience, they are the cause of it much more often. We should also be aware of the inadvertent use of topical steroids. For example, the residue left on your hand. You've treated your child's eczema as their caregiver. You washed your hands perhaps, but there's still a tiny residue there.
And then your hand goes up to your face at night or whatever, and that small amount of steroid can be all it needs to trigger this change. And the natural thing to do when you see that is to want to put more steroid on it. Another important point to point out, we think of hydrocortisone being a weak or a very mild topical steroid, it usually is. But there are some hydrocortisone salts, such as that found in Locoid® which are actually very potent topical steroids.
So you need to know what you're dealing with. And there are, unfortunately, people who go out to get very potent topical steroids, not realising that they're using a topical steroid. There's one available on the high streets called Abido, which is used to try and lighten dark skin. And so the illicit use of topical steroids where people don't even know that they're using a topical steroid, and that could trigger this as well.
Now, we touched there on the problems with the medical profession, we've, sort of, been reluctant to acknowledge the existence even of Topical Steroid Withdrawal and how people can get into that awful, vicious cycle. I have heard something which, if you like, takes it up a gear even more, where parents have been accused of child abuse because they have realised that their child has Topical [Steroid] Withdrawal Syndrome and the topical steroids are causing the problems.
But they refuse to accept the medical advice to use even stronger topical steroids and they're castigated for it. And isn't that just dreadful? It really is appalling and it's this ignorance in the medical profession and this blinkered approach, is really not helping anybody at all. And so often I hear a patient's reluctance to use a topical steroid is blamed for their ongoing and worsening condition, exactly like that child abuse case.
And that just completely undermines the doctor-patient relationship. And things can rapidly become adversarial, loss of trust both ways, um, miscommunication and it's just, it's so unnecessary. We shouldn't allow things to fall into that degree of dysfunction. We should be listening to our patients and the chances are that they're right. And we should be working with them to help them, rather than blame them for not adhering precisely to what we'd said.
Particularly when it turns out that we could be wrong. And the fact it remains poorly understood doesn't help all that in the mix either. It doesn't and sadly, there's virtually no research, that I know of, going into this matter, into this condition. And to make things even more worrying, we don't currently have any effective treatment or don't know what to do with it, other than to say, "it does usually get better". Although it takes years, it does usually get better.
And the one thing that's important is not to put any more topical steroid near the face or the skin that's affected, just stop them altogether. And even steroids by mouth or by injection, they can aggravate things as well. So you've just got to accept that, that's not a treatment option for you for, possibly forever. But being a bit more optimistic because this has been very depressing.
In time it does usually get better and I hope that when we meet our guest, you will see that this is a condition that can come under control, although it has ongoing issues. But it can be something that in the fullness of time does tend to get better. So I think at that point, I would really like to introduce our guest speaker. Over to you, Roger.
Briana, who we mentioned at the top of the show, has been unfortunate enough to have suffered from severe eczema and is currently on high-intensity treatment for that to help keep it in control. Now, unlike George and I, who are blissfully ignorant about experiencing Topical Steroid Withdrawal, she has unfortunately had terrible problems in this area. And I think perhaps some of the things that George and I have talked about have really resonated with her journey.
Briana's currently studying film directing, a very busy schedule, but she's taking a break from her studies to join us today and we really do thank you so much for coming along Briana. I suppose in a nutshell, just tell us your story. What are your experiences in the real world about, topical steroids and their withdrawal? Yeah. How long is this podcast? [laughter] I mean, honestly, what you guys have been talking about is so important.
My journey just starting with prescription topical steroids was really when I was much older. I had eczema growing up, in the normal areas, creases of the arms, maybe the neck, behind the knees. I know as a dancer, I would, you know, get sweaty and those are the areas that would cause the most annoyance. But, at 22, I started a job on a cruise ship, performing, and, I don't know what happened. I believe it was probably a rampant fungal infection, that I had caught.
But I went to a dermatologist, she stated, "I know exactly what you need" and then just threw the kitchen sink at me. I was on different antifungals and antibiotic and antifungal cream, a topical steroid and two different antihistamines and Protopic®. So I just had like a slew of things and for about, three years, I was very up and down having to use all of these things and the spots where my eczema was started to spread. And at one point she didn't really even know what to do.
I was put on ciclosporin for about six months, but it was really kicking my kidneys, so went off of that, [it] wasn't really helping. I had gotten married near the end of 2014 and decided, you know what, I'm having to like tiptoe like eggshells around my skin. Why don't I just give myself a break from all of this medication? And when I tried to stop, I found out I couldn't. Anytime I stopped using the steroid, it would just start spreading. It would spread through my wrists.
It would spread around my pelvic region, through my back and then my eyes started swelling really badly. And then for about, almost two months, it was just questions. Searching the internet, going to the emergency room, going to my, family care doctor. They're giving me steroid shots, they're giving me steroid packs, like, orals to try and figure out what's going on. It must be an allergy. And I stumbled upon Topical Steroid Withdrawal online, [by] finding someone on YouTube.
And that's the biggest thing with this group, we find out about it because of social media. Nowadays it's more TikTok and Instagram, but back then we didn't have that. It was mostly YouTube and a very small Facebook group and a fairly brand new ITSAN, the International Topical Steroid Awareness Network. And from there, I just knew that's what I was going through. My last steroid oral was January 25th 2015, and I haven't touched them since. The withdrawal process is gruesome.
I mean, I lost my hair. My hair was falling out. I was red from head to toe. I was oozing and crusting and sticking to my clothing and my sheets and I couldn't work anymore. So financially it's completely debilitating. And then it puts more pressure on your family and your partner to take care of you and hold that end up. You know, my marriage fell apart through all of this. [It's] really, really hard on people. And when you try to go to a doctor, which is what I did at three months.
It was at a university that I went to and it was a teaching hospital and I was getting excited that someone would, you know, be able to talk to me about this and it was just completely pushed aside. My history wasn't even taken well and they just offered me like more steroids. "I needed probably a Kenalog® shot", they said, and I just knew it was going to be an uphill battle from there.
But no matter what research I brought in, no one cared to look at it or read it or take the time to talk to me about it, which is what you said, breaks down the trust. Because if I can't talk to my doctor about it, they're not listening to me, so why should I listen to them? That's the kind of battle for about eight years. It's so sad and so disempowering, isn't it? And so disappointing as well.
Do you think things are changing or not, from what you see on the social media side of things, from talking to people? Very, very slowly. The only thing that's really changing is that the message is reaching more people. Through our social media, I have a TikTok [account] but I'm never on it. It's more for the younger generation than I am and they've just been blowing it up. People see this and they, become aware of it. And I think that's probably the growing issue as well as now.
People with, you know, skin conditions, especially eczema, they're going to their doctor and asking, "is this a concern?" and their doctor is like, "no, this is dumb". You have research calling us 'steroid phobic' or, you know, 'corticosteroid phobic'. Why on earth now is that patient going to look at that doctor and go, "oh, okay, I can really trust this person." So it just, it creates an even bigger barrier. I believe nowadays some doctors are, I can't say learning about it.
Like you said, you didn't learn about it in school or in textbooks. I've even spoken to and interviewed some doctors who are recently out of school and they're like, "we didn't learn about it in school." We didn't learn about dermatology, I'm afraid. Yeah. So it's not being disseminated where it should be. So I feel very lucky that I've interviewed doctors who do know about it and want to be a part of the conversation.
But sadly, I don't think the general, you know, GP, paediatrician, even dermatologist, I just don't think they're very knowledgeable. Some may be curious and hopefully we can find those compassionate doctors to like, start looking into things. But right now it's still very much, it feels like a grassroots effort. Yeah. I'm seeing the early roots of the profession acknowledging this.
There's, for example, a statement by the NES, the National Eczema Society and the British Association of Dermatologists. In my view, definitely acknowledging it... It's there. And feeling that we need to move in that direction. There's an American organisation who produced the equivalent of our NICE report. I think back in 2015. That's right. Yes, American Academy of Dermatology. Thank you. Back in 2015, they pretty well dismissed it and barely mentioned it.
And in the more recent article or guideline on atopic eczema, they do acknowledge it a bit. But it really is just the early roots of some acknowledgement that this is something that we need to be thinking about. No, this is not that uncommon. This is devastating, and this needs a revolutionary way of thinking about things and helping this group of people.
Seriously, they know more about it than we ever will, and they know what it feels like, and they need help and support in so many areas of their lives. Absolutely. Briana, just in your extensive experience of talking to people, unfortunate enough to go through this; did they sort of say to you that one of the stock responses from healthcare professionals is to instantly become defensive and the barriers come up?
Because that unfortunately can happen, you know, in a whole range of medical conditions when healthcare professionals are challenged. Does it just become pretty adversarial quite quickly? Sadly, that's what I mostly see. You get the odd posts where they're like, "oh my goodness, I want to share this doctor's name everywhere because they're so wonderful. And I wish everybody could see this doctor".
But a lot of the times, it's just very disheartening, heartbreaking posts where someone is just so desperate, they didn't even want to go to the doctor, but they knew they had to. And the second they go in, they're just told "this isn't your problem. This is not what's happening." And usually they're either offered a topical steroid or nowadays, you do have the, you know, immunosuppressants and the biologics and things.
And people just get scared because they're like "this one pharmaceutical drug did this to me and it's not being acknowledged that it did this to me. I don't know what these other drugs are going to do." So people tend to just shy away from any help whatsoever, which is also detrimental. Like if you do have a bacterial infection and it needs to be taken care of, and you're not going to the doctor to get it taken care of, it's just very, It's very scary.
It's sad that, you know, the people that we should go to for help, we feel like we can't. Yeah, it's almost a plague on all their houses really, understandably. But what an indictment of our profession, Roger. Absolutely, it's deeply, depressing if I'm bluntly honest. Are you trying to highlight awareness however you can with healthcare professionals or the ones that want to listen, Briana? I mean, I've been trying to do a range of things since the beginning. I didn't know what I was doing.
I have a writing background and I was a performer. I tried to help our community, first of all, and then when I created the first documentary for this, I was really trying to work with ITSAN. I don't work on the board, I just work beside them. I love what they're trying to do and they would help, you know, take me to different conferences that they could as a patient advocate and I would start to talk to different doctors. And I've been so grateful to be able to connect with a lot more doctors.
I've been to Washington DC twice now for what they call Hill Day, to try and help lobby for, you know, access of care and things like that. So any doctor that I can speak to, I will. But it's usually the ones that are already in the realm of being curious that I end up speaking to. The ones that have no idea about it are usually the derm or the allergist or someone that I have to go to because I need something and it's very hit and miss, sadly, talking to them.
So it's been a mixed bag when it comes to talking to professionals. And if anyone listening would like more information to look at it in a bit more detail, do you have any pointers as to where the first port of call might be useful for them to look at? I usually always point people to www.itsan.org, I-T-S-A-N.org. It is our non-profit for this condition. It is based in the States, but the information can be used anywhere. They have so much on the website as much as they can.
Like any new research and things like that, what to look for. Especially if you're someone that's been using topical steroids for years, and you've had potency building up higher and higher, you know, they just are trying to showcase what the problem is and what they're trying to do to solve the problem. So that's probably the first place and then I have my documentary. It's more just to help maybe that patient feel less alone.
If they do feel that they're going through it or they are going through it or their family is having to watch them go through it. It has just different stories from patients all around the world and a few doctors who talk on the topic. Where can that be seen? It's on my YouTube channel just under, Briana Banos. It's called 'Preventable: Protecting Our Largest Organ'. I love the ITSAN website. It's so reasonable. It's so informed. It's balanced. It's fair.
But there's another website that I've noticed, I think you brought this to my attention, Briana, called 'Scratch That'. Which was started, I think, by five or six young people, teenagers by the look of things. It's a UK-based website, I think, and they've got, again, vast amounts of information there. Stories and details of what this is all about and if anything is going to make your heart really sad, it's going to their website.
And I'm hoping it's going to change the way in which the medical profession starts to look at this condition and we get engaged with it, get involved in the research. and take that forward. Are you aware of any useful research being done at all, Briana? Yes, I will say with 'Scratch That', um, it was a few women in their like mid-twenties, and I've thankfully gotten to interview two of them for my future documentary. They've tried to gather as much research as they can.
I know they did the big push for, I believe it's your Yellow Card, to try and get people to put in that they had symptoms and things happening. So, again, grassroots. You know, people are trying to get it out there. I believe there's possibly something happening in the UK. Like I know NES, I don't think they're doing anything specifically for TSW, but I know that they're trying to raise more awareness with how to use topical steroids. With colour coding for different strengths.
Correct. And then in the States, I'm actually part of a study that is still in the process. There's no funding going into figuring this out, but we were lucky enough to catch the curiosity of one doctor and the study is ongoing. We're still trying to gather the information that they need, but I'm hoping it looks really promising. They're trying to look at everything from all angles. So I'm hoping that something does come out of it. You just, you never know.
If I was in the world of dermatology today, as a young doctor, I have to say, I would embrace this. This would be one of the most fascinating areas of research to get involved in. We don't understand it and it needs an answer. So Briana, having gone through the amazing journey that you've gone through; to anyone who is in your shoes, do you have any practical tips or advice from all the experience you've now got? So I think the biggest thing emotionally is you're valid. You are seen.
You are going through, what you are going through. If a doctor says otherwise, know that you are not alone in that. There's a community behind you. If you haven't joined a forum or if you don't have, you know, the Instagram community or the TikTok community, I highly recommend going there. It's nice to lean on other people who know what you're going through. It's very important. I know some people go to therapy to help with this. This is a traumatic experience.
It is something that even when you are healed, and that will come, it can last emotionally longer than the physical process of going through it. So please be aware of those things. Try and have support around you with family and friends. Lean on them and don't compare yourself to others. Everyone's journey is different.
When we start setting goals and start setting expectations of when I'm going to be healed, the disappointment starts to set in and that's when the real depression and anxiety starts to fall on your shoulders. Cause you know, my timeline is going to be different than yours. I'm a veteran, you know, having to go through it. So I would say take it day by day. Don't compare yourself to others.
And then physically, things that have helped so many people are if you can get into the bath, you know, dead sea salts. Fans, a fan is your friend, especially with not being able to regulate your temperature. I know when it came to oozing, I would use things like Viscopaste bandages, things like that. I know that there are different beddings and things like silk or, you know, things that may not stick to your face as much as something else. Just try and keep as healthy as you can be.
Don't eat a lot of junk if you can. Just try and help your body as much as you can. Drink a lot of water, eat a lot of protein. I believe that there was a study that showed people who are burn victims, are usually given a higher protein diet to help with their healing, like wound healing. And we're kind of in the same boat, so that may just help some. So it's just things like that. And not to beat yourself up. One day you might be doing well and the next you may not.
And you'll sit there and, you know, try and figure out what it was that triggered you, and it may not have been anything that you could stop. So just be gentle. There isn't a, there isn't a Holy Grail of an answer yet, is there? So even though you might be going to a doctor who acknowledges and empowers your position and supports you, they're not then going to be able to say "take this and it will get better". We haven't got that answer yet.
What we do know is that you just cannot afford to put topical steroids on that skin again, probably ever. And it will take a long time. And we're talking if you're lucky months, but probably years. And years of it remaining unstable and unpredictable Up and down, yeah. Healing is not a linear journey. No, well that's really helpful. Thank you very much indeed. Briana, I can't thank you enough for coming along to speak with us today, and for sharing such personal and important experiences.
It's an absolute eye-opener. So grateful to you and I think our listeners will equally share my gratitude there. Let's hope in the near future we might see a more informed and more empathetic medical profession helping our patients with this dreadful condition and I'd love to see some more research going on there. So thank you very much indeed. No, thank you. Absolutely. I just second everything. It's been an inspiring and a humbling talk, you know, reflecting on our profession.
But it's with people like you Briana that, can help take us forward. So, so thank you. Well, I think that's an appropriate place to bring this particular episode to a close, George. So, I do hope that people listening have found it interesting and helpful. If you do enjoy these podcasts, then do rate and review us, because it really does help us in putting them together. And we'd love to hear your feedback.
We'd also like to thank our sponsor, AproDerm®, for all their help in putting these Skin Deep podcasts together. We couldn't have done it without them. So, until the next time, it's goodbye from George. Goodbye. And it's goodbye from me. Goodbye.