July 22, 2024 • 32 mins
In this episode on Topical Steroid Concerns, Dr George Moncrieff and Dr Roger Henderson will educate and upskill you on Topical Steroid Withdrawal, also known as Red Skin Syndrome. They will be sharing their experiences and covering:
- What Topical Steroid Withdrawal is?
- Who it affects
- Symptoms of Topical Steroid Withdrawal
- The impact that the healthcare profession has had and is continuing to have by not being alert to this condition
- What needs to be done urgently to help individuals who are experiencing this devastating condition
- MHRA updates following the reports to the Yellow Card Scheme
They are also fortunate enough to be joined by Briana Banos, to get a patient-perspective on Topical Steroid Withdrawal. This raw and emotional episode is not to be missed.
Useful resources and links:
MHRA: Topical corticosteroid and withdrawal reactions: https://www.gov.uk/guidance/topical-corticosteroids-and-withdrawal-reactions
MHRA: Topical steroids: introduction of new labelling and a reminder of the possibility of severe side effects, including Topical Steroid Withdrawal Reactions, available at: https://www.gov.uk/drug-safety-update/topical-steroids-introduction-of-new-labelling-and-a-reminder-of-the-possibility-of-severe-side-effects-including-topical-steroid-withdrawal-reactions#
ITSAN – www.itsan.org
Scratch That – https://scratchthat.org.uk
Thank you to our kind sponsor AproDerm, who provide a comprehensive range of quality emollients designed for the management of dry skin conditions, including eczema, psoriasis and ichthyosis.
To simplify the process of finding the most suitable emollient for each patient, they have developed a remarkable solution: the AproDerm Emollient Starter Pack. This pack conveniently combines all four of their emollients in a single prescription, enabling patients to identify their ideal emollient more efficiently, aiding both compliance and adherence.
Find out more: https://aproderm.com/aproderm-emollient-starter-pack/
LI: https://www.linkedin.com/company/fontus-health-ltd/
Thank you for listening. We hope you find this podcast interesting and helpful, please leave us a review or email info@aproderm.com with any feedback on this episode or suggestions for what you would like to hear about in future podcasts.
The views expressed in this podcast are of Dr George Moncrieff and Dr Roger Henderson. Fontus Health has not influenced, participated, or been involved in the programme, materials, or delivery of educational content.
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
(00:08):
Hello and welcome to this Rash Decisionspodcast, where we look at skin-related
issues, conditions, and treatments inan interesting and informative way.
I'm Dr Roger Henderson.
I'm a GP with a long-standinginterest in this particular area
of health and I've been working inthe NHS for almost 40 years now.
And I'm Dr George Moncrieff.
I was also a GP although I'venow retired from my practice.
(00:31):
I'm a primary care advisor to the NationalEczema Society and a former Chair of
the Dermatology Council for England.
Now, this is the second of two podcaststhat George and I are doing about
topical steroids and if you were withus for the first, we do hope that
(00:55):
you found it helpful and interesting.
But this time, we've decided we'regoing to look at Topical Steroid
Withdrawal and some of the potentialproblems associated with this.
And in addition, George and I areabsolutely delighted to be joined
shortly by our special guestfor this episode, Briana Banos.
Briana is an amazing individual withan incredible journey involving topical
(01:18):
steroids, and she'll help us understandthe patient's perspective about topical
steroids and Topical Steroid Withdrawal.
So just getting right tothe chase here, George.
Topical Steroid Withdrawal, itsounds like a new condition,
but it really isn't, is it?
Topical Steroid Withdrawal Syndromeis not a new condition, although
(01:39):
it does seem to be recogniseda bit more frequently nowadays.
It was actually, first described, ordiscussed by Burry, a guy from Australia
back in 1973, and then properly puton the map in 1979, 45 years ago,
by Kligman and Frosch, who coinedthe term Topical Steroid Addiction.
(02:01):
They called it that because,typically, patients with this find
their topical steroid treatmentstarts to work less effectively.
And, understandably, initially thatencourages them to start using more
topical steroid, perhaps switchingto a stronger topical steroid, but
things continue to deteriorate.
The topical steroid is exhibiting whatdoctors call tachyphylaxis, a feature
(02:24):
of true addiction that the more youuse, the weaker the response becomes.
And I suspect that many people thinkTopical Steroid Withdrawal is something
that really just occurs when you've beenhammering the skin for months and months
with high doses of topical steroids.
But I suspect from what you'vesaid there, it's highly variable
(02:45):
and can happen relatively quickly.
Yeah.
Sometimes it first develops, as yousay, after years of successfully
using a topical steroid andthen it starts to come on.
Other times it comes on in just a coupleof weeks of starting a topical steroid.
It's remarkably variable and individual.
But it's a really debilitatingcondition that usually comes
(03:09):
on when the topical steroid isstopped, but it can develop during
treatment or even between treatments.
I would bet you a pie and a pintthat healthcare professionals
listening to this today, they'rethinking about their practice lists.
They may be thinking, "I'm surethat I don't have any patients
with Topical Steroid Withdrawalbecause it hardly ever happens."
(03:33):
How common is it?
Because it's not talked about a lot.
I'm having the opposite thought.
I'm thinking about those patients thatI missed and that I didn't recognise it.
Keep you awake at night, yeah.
I'm thinking, I wish I hadthought more about this then.
But recent studies have confirmedthat it is hugely under-recognised.
(03:56):
And they've demonstrated thateven up to 12% of patients, that's
over 1 in 10 people who use atopical steroid, are affected.
Wow.
Admittedly, that means that 88% ofpatients using topical steroids are
not affected, which is great news.
But, this is not rare.
This is happening.
This is really happening and I thinkwe do need to be very alert to it.
(04:19):
So is it Russian roulette,when we're prescribing to our
patients a topical steroid, asto who may or may not develop it?
Do we actually know what's goingon in the skin to trigger one
person but then not another?
If only I knew.
It does seem to be more common incertain groups, and I'll come on to that.
(04:40):
But in the last podcast,we talked about how topical
steroids weaken the skin barrier.
That probably has a part to play.
People whose skin barrier is perhaps morevulnerable, but that's people with eczema.
But furthermore, the potency ofa topical steroid is measured
by the degree of constrictionit causes in the small arteries.
(05:02):
Steroids cause the smallarteries to contract.
That's how we measure potent topicalsteroids, by how severe that is, or how
marked that is, and how long it lasts for.
Take facial skin, for example,that has a tremendous capacity
to vary its blood supply.
Some people, when they'reemotionally stressed, they go red.
Others don't.
(05:23):
Some people have an exaggeratedtendency to flush or blush easily.
This is highly individual andI just wonder whether something
similar might be going on here, anexaggerated vasomotor instability.
Which is [how] we control theblood flow to our skin, but in
some individuals that's not stable.
This is exaggerated by topical steroids,or even triggered by topical steroids.
(05:47):
In the early stages of TopicalSteroid Withdrawal Syndrome,
the skin becomes bright red.
Patients often describe this as feelingand looking like severe sunburn.
And this can be extremely unpleasantwith intractable itch, a burning
pain, which can be so severe that evenwashing with plain water is unbearable.
(06:13):
They daren't wet their skinbecause it's just too sore.
The thought of applying justa simple moisturiser, an
emollient, is utterly untenable.
Is that what I think I'veheard called Red Skin Syndrome?
Yes, this is called Red Skin Syndrome.
These changes can extend beyondthe area of skin that was being
(06:35):
treated with the topical steroid.
And when you dilate a blood vessel,it can become leaky, causing
fluid to escape into the tissues.
So these people sometimesdevelop swelling around their
ankles, and swelling of the skin.
Their face looks different, looks quitedeformed, it's disfiguring and this
(06:56):
change is called 'erythematoedematous'
It's a complicated word, but 'erythro'means red and 'oedematous' means swelling.
At the same time, thermoregulation, theability to keep your body temperature,
your core temperature balanced, goes AWOL.
And this can result in feelingsof being too cold or too hot.
(07:16):
Really unpleasant.
Sleep becomes disrupted dreadfully, manyexperience extreme fatigue, partly from
lack of sleep, but from all this going on.
Hardly surprising, they have emotionalfluctuations, and many go on to
develop severe depression and anxiety.
It's pretty nasty.
(07:36):
It then, at this stage, it canlook a bit like severe eczema.
And it's so easy to understand howhealthcare professionals, in particular,
jump to the conclusion that thisis simply undertreated eczema that
simply needs more topical steroids.
For somebody with this condition,that would be a disaster.
(07:59):
And if that's not unpleasant enough,it can then progress to more severe
patterns with lumps in the skin, massiveflaking of the skin, which some people
call snowing, which just gives yousome idea of how dramatic that is.
Deep, extremely painful cracks inthe skin, and dramatic crusting.
(08:20):
This is not infected eczema andantibiotics generally don't help here.
Topical Steroid Withdrawal Syndromeis different from an eczema relapse.
For a start, it extends beyond the areaof skin that was being treated, but I
have seen it look far worse than theworst cases of eczema I've ever seen.
(08:43):
It's a wretched condition.
I suppose the elephant in the roomhere, that we're all thinking of,
and you did touch on it; someone withknown established eczema who has been
on topical steroids and probably othertreatments as well, turns up to their
(09:03):
doctor and says, "look at this skin.
It's absolutely awful."
Unless that healthcare professionalis dialled in to the possibility
of Topical Steroid Withdrawal,what are they going to do?
Are they going to say, "wow, thiseczema is completely out of control,
we're going to have to doubledown" and you then are just hosing
the fire with petrol, aren't you?
(09:24):
Can you imagine, you're so desperate.
You're finally going to see someone youhope is going to be able to help you,
empathise and understand and be moreknowledgeable than you, and you encounter
that sort of disempowering ignorance.
It is awful to thinkthat is what's going on.
And slightly depressing if I'm honest.
And one thing we haven't touchedon, does it have a predilection
(09:46):
for various parts of the skin?
Yes, strangely, it does.
It usually involves the head andneck or sometimes the genitalia.
I've never seen it onthe palms and the soles.
We'll have to ask our expertabout that when we introduce her.
It occurs mostly in young people.
I've even seen this in children.
(10:07):
And the most common group arewomen, I think, in their twenties
to forties, I would say that'sprobably the greatest risk group.
And the awful thing is it can lastfor months or years, after stopping
the topical steroid, the skin isrendered unstable and abnormal
(10:27):
with a predilection to havingflares brought on by a variety of
circumstances and totally unpredictable.
That can be really disarmingand it's triggered this change
that just goes on and on and on.
And is it simplistic of me to thinkthat the stronger and more potent
the topical steroid, the greaterthe likelihood of TSW developing?
(10:53):
Yes, the more potent the topicalsteroid, the more likely it is
that, that treatment will cause it.
But it's actually more common, in myexperience, with the mild topical steroids
because they're used much more frequently.
Okay.
And we should also be aware of theinadvertent use of topical steroids.
For example, the residue leftoverif you've treated, as a caregiver,
(11:13):
you've treated your child,there's a bit left on your hands.
You think you've washed your hands,but there's a residue there, and you
go and touch your face at bedtime,and that begins to set things up.
Then you might go and get your owntopical steroid to calm that down,
and you start this vicious cycle.
Also there are what Icall 'hidden steroids'.
A lot of treatments don't advertisethat they have a steroid in them.
(11:34):
So for example, Daktacort® or Fucidin®H, the 'cort' is hydrocortisone
and the 'H' is hydrocortisone.
So sometimes the steroid ishidden and people aren't thinking,
"I'm putting a steroid on here."
Another important point is actuallysometimes, the potency of a
topical steroid is not obvious.
The packaging needs to be improved,but for example, hydrocortisone, we
(11:56):
all think of as being a weak, mildtopical steroid, and it usually is.
But that's hydrocortisone acetate.
Acetate, yeah.
And there's hydrocortisone butyrate,which is Locoid®, and that's a potent
topical steroid, so there are traps there.
And increasingly, we're gettingconcerned about people who are
buying, illicit topical steroidsto help with, for example, their
(12:18):
dark skin to try and bleach it.
There's a product calledAbido, which you can get.
Or treatments to treat acnethat are acquired illicitly
and they have steroids in them.
And, I suspect that our professionhasn't covered itself with glory
with Topical Steroid Withdrawaland is viewed as a rare condition.
(12:41):
And the problem, if you use theword rare, people can start to think
well, I'm never going to see it.
Although I did listen to a speaker,who deals with rare diseases, the
other day who said that statistically1 in 17 people in the UK have what is
technically called a 'rare condition'.
Which my jaw dropped open when Iheard that it's not that rare, but
(13:01):
I think Topical Steroid [Withdrawal]really fits that bill, doesn't it?
No, there are so many rare conditionsthat you commonly encounter a rare
condition, is what he's saying.
Exactly, it fits the billthat it's being missed.
But what I'm saying is Topical SteroidWithdrawal Syndrome is not rare.
Yeah.
And I agree.
There are a lot of doctors out there,and our profession has been guilty of
this in spades, for being reluctantto acknowledge it even exists.
(13:27):
As a result it's oftennot diagnosed or rejected.
Therefore, because it's notdiagnosed, it remains rare in their
practice, as if it doesn't exist.
I was never taught aboutit, that's for sure.
No, you're not taught.
It's not considered in the differentialdiagnosis, and the cycle goes on.
The problem just keeps getting repeated.
(13:48):
It's thought to be rare because it'snot diagnosed, and because it's not
diagnosed, it's rarely thought about.
Can you imagine, though, just howgrim it must be, to have an extremely
painful, bright red face that goesonto becoming cracked, crusty,
swollen, and severely disfigured.
It's, unimaginable.
(14:09):
And to add to that intolerable burden ofsuffering, how it must feel, when you go
to see a health professional, who blamesyou for being so stupid as to refuse
to continue to use the topical steroid.
So often I hear the patient'sreluctance is the blame for the
worsening and severe skin problems.
And then the doctor-patient relationshipjust breaks down and becomes adversarial.
(14:34):
It's awful, all round.
I've even heard of cases where parentshave been accused of child abuse because
they recognise that topical steroids aredriving their child's skin problem, but
they refuse to accept the medical advice.
Sensibly, they refuse to use strongertopical steroid treatment, but they've
gone through the child abuse process.
We just don't understandthis condition enough, yet.
(14:57):
There appears to be very little researchgoing on by the medical profession.
To make matters worse, there'scurrently very little we can do to
help other than say "stop the steroidsand eventually it will get better."
This desperately needs someintelligent dialogue, and even
more, some quality research.
(15:19):
So I think at that point, I would reallylike to introduce our guest speaker.
Over to you, Roger.
Briana, who we mentioned at the top ofthe show, has been unfortunate enough
to have suffered from severe eczema andis currently on high-intensity treatment
for that to help keep it in control.
(15:41):
Now, unlike George and I, whoare blissfully ignorant about
experiencing Topical SteroidWithdrawal, she has unfortunately
had terrible problems in this area.
And I think perhaps some of the thingsthat George and I have talked about
have really resonated with her journey.
Briana's currently studying filmdirecting, a very busy schedule,
(16:02):
but she's taking a break fromher studies to join us today.
And we really do thank you somuch for coming along, Briana.
I suppose in a nutshell,just tell us your story.
What are your experiences inthe real world about, topical
steroids and their withdrawal?
Yeah.
How long is this podcast?
(16:22):
[laughter]
I mean, honestly, what you guys havebeen talking about is so important.
My journey just starting withprescription topical steroids
was really when I was much older.
I had eczema growing up, in thenormal 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
(16:46):
that would cause the most annoyance.
But, at 22, I started a job ona cruise ship performing and,
I don't know what happened.
I believe it was probably a rampantfungal infection, that I had caught.
But I went to a dermatologist, shestated, "I know exactly what you need."
and then just threwthe kitchen sink at me.
(17:07):
I was on different antifungals andantibiotic and antifungal cream, a
topical steroid and two differentantihistamines and Protopic®.
So I just had like a slew of thingsand for about three years, I was
very up and down having to use allof these things and the spots where
(17:29):
my eczema was, started to spread.
And at one point, she didn'treally even know what to do.
I was put on ciclosporin for aboutsix months, but it was really
kicking my kidneys, so went off ofthat, [it] wasn't really helping.
I had gotten married near the end of 2014and decided, you know what, I'm having
(17:50):
to like tiptoe like eggshells around myskin, why don't I just give myself a break
from all of this medication?, and whenI tried to stop, I found out I couldn't.
Anytime I stopped using the steroidit would just start spreading.
It was spread through my wrists.
It would spread around my pelvicregion, through my back and then my
(18:10):
eyes started swelling really badly.
And then for about, almost 2months, it was just questions.
Searching the internet, goingto 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'sgoing on, it must be an allergy.
(18:31):
And I stumbled upon TopicalSteroid Withdrawal online, [by]
finding someone on YouTube.
And that's the biggest thingwith 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 andit was mostly YouTube and a very small
Facebook group and a fairly brand newITSAN, the International Topical Steroid
(18:56):
Awareness Network and from there, I justknew, that's what I was going through.
My last steroid, oral was January 25th2015 and I haven't touched them since.
The withdrawal process is gruesome.
I mean, I lost my hair.
My hair was falling out.
(19:17):
I was red from head to toe.
I was oozing and crusting andsticking to my clothing and my
sheets and I couldn't work anymore.
So financially, it's completelydebilitating and then it puts more
pressure on your family and your partnerto take care of you and hold that end up.
You know, my marriage fellapart through all of this.
[It's] really, really hard on people.
(19:40):
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 toand it was a teaching hospital and I was
getting excited that someone would, youknow, be able to talk to me about this
and it was just completely pushed aside.
My history wasn't even taken well andthey just offered me, like more steroids.
(20:00):
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 Ibrought in, no one cared to look at
it or read it or take the time totalk to me about it, which is what
you said, breaks down the trust.
Because if I can't talk to my doctorabout it, they're not listening to
(20:22):
me, so why should I listen to them?
That's the kind of battlefor about eight years.
It's so sad and sodisempowering, 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, when talking to people?
Very, very slowly.
(20:42):
The only thing that's really changingis 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 thanI am and they've just been blowing it up.
And people see this andthey become aware of it.
And I think that's probably the growingissue as well as now people with,
(21:06):
you know, skin conditions, especiallyeczema, they're going to their doctor
and asking, "is this a concern?"
and when their doctor islike, "no, this is dumb."
You have research callingus 'steroid phobic' or, you
know, corticosteroid phobic.
Why on earth now is that patient goingto look at that doctor and go, "oh,
okay, I can really trust this person?"
(21:28):
So it just, it createsan even bigger barrier.
I believe nowadays some doctorsare, I can't say learning about it.
Like you said, you didn't learnabout it in school or in textbooks.
I've even spoken to and interviewedsome doctors who are recently out
of school and they're like, "wedidn't learn about it in school."
We didn't learn aboutdermatology, I'm afraid.
(21:50):
Yeah, so it's not being disseminatedwhere it should be, and so I feel
very lucky that I've intervieweddoctors who do know about it and want
to be a part of the conversation.
But sadly, I don't think thegeneral, you know, GP, paediatrician,
even dermatologist, I just don'tthink they're very knowledgeable.
(22:13):
Some may be curious and hopefully wecan 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 theprofession acknowledging this.
There's, for example, a statement by theNES, the National Eczema Society and the
(22:33):
British Association of Dermatologists.
In my view, definitely acknowledging it.
It's there.
And feeling that we needto move in that direction.
There's an Americanorganisation who produced the
equivalent of our NICE report.
Who, I think back in 2015, That's right.
Yes, American Academy of Dermatology.
(22:53):
Thank you.
Back in 2015, they pretty well dismissedit and barely mentioned it and in the more
recent article, or guideline on atopiceczema, they do acknowledge it a bit.
But it really is just the earlyroots of some acknowledgement
that this is something thatwe need to be thinking about.
No, this is not that uncommon.
(23:14):
This is devastating and this needs arevolutionary way of thinking about
things and helping this group of people.
Seriously, they know more about itthan we ever will and, they know what
it feels like and, they need help andsupport in so many areas of their lives.
Absolutely.
Briana, just, in your extensiveexperience of talking to people,
(23:34):
unfortunate enough to go through this;did they sort of say to you that one
of the stock responses from healthcareprofessionals is to instantly become
defensive and the barriers come up?
Because that unfortunately canhappen, you know, in a whole range
of, medical conditions when healthcareprofessionals are challenged.
(23:54):
Does it just become prettyadversarial quite quickly?
Sadly, that's what I mostly see.
You get the odd post wherethey're like, "oh my goodness.
I want to share this doctor'sname everywhere because
they're so wonderful and I wisheverybody could see this doctor."
But a lot of the times it's just verydisheartening, heartbreaking posts
(24:18):
where someone is just so desperatethey didn't even want to go to the
doctor, but they knew they had to.
And the second they go in, they'rejust told, "this isn't, this isn't your
problem, this is not what's happening."
And usually they're either offereda topical steroid or nowadays you do
have the, you know, immunosuppressantsand the biologics and things.
(24:38):
And people just get scared becausethey're like "this one pharmaceutical
drug did this to me and it's not beingacknowledged that it did this to me.
I don't know what theseother drugs are going to do."
So people tend to just shyaway from any help whatsoever,
which is also detrimental.
Like if you do have a bacterialinfection and it needs to be taken
care of, and you're not going tothe doctor to get it taken care of,
(25:00):
it's just very, it's very scary.
It's sad that, you know, thepeople that we should go to for
help, we feel like we can't.
Yeah, it's almost a plague on alltheir houses, really, understandably.
But what an indictmentof our profession, Roger.
Absolutely, it's deeply,depressing, if I'm bluntly honest.
(25:20):
Are you trying to highlight,awareness, however you can, with
healthcare professionals or theones that want to listen, Briana?
I mean, I've been trying to do arange of things since the beginning.
I didn't know what I was doing.
I have a writing background and I wasa performer and I tried to, help our
(25:44):
community first of all and then when Icreated 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 andthey would help, you know, take me to
different conferences if they could,as a patient advocate, and I would
start to talk to different doctors.
(26:04):
And I've been so grateful to be ableto connect with a lot more doctors.
I've been to Washington DC twicenow 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 thatare already in the realm of being
(26:25):
curious that I end up speaking to.
The ones that have no idea about it areusually the derm or the allergist or
someone that I have to go to becauseI need something and it's very hit
and miss, sadly, talking to them.
So it's been a mixed bag when itcomes to talking to professionals.
And if anyone listening would likemore information to look at it in a bit
(26:49):
more detail, do you have any pointersas to where the first port of call
might be useful for them to look at?
I usually always point peopleto www.itsan.org, I T S A N.org.
It is our non-profit for this condition.
It is based in the States, but theinformation can be used anywhere.
(27:10):
They, have so much on thewebsite, as much as they can.
Like any new research and thingslike that, what to look for.
Especially if you're someone that's beenusing topical steroids for years and
you've had potency building up higher andhigher, you know, they just are trying
to showcase what the problem is and whatthey're trying to do to solve the problem.
(27:33):
So that's probably the first placeand then I have my documentary.
It's more just to help maybethat patient feel less alone.
If they do feel that they're goingthrough it, or they are going
through it, or their family ishaving to watch them go through it.
It has just different stories frompatients all around the world and a
few doctors who talk on the topic.
(27:56):
Where can that be seen?
It's on my YouTube channeljust under, Briana Banos.
It's called 'Preventable,Protecting Our Largest Organ.'
Fantastic.
I love the ITSAN website.
It's so reasonable.
It's so informed.
It's balanced.
It's fair.
(28:17):
But there's another website that I'venoticed, 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.
Correct.
And they've got, again, vastamounts of information there.
(28:38):
Stories and details of what thisis all about and if anything is
going to make your heart reallysad, it's, going to the website.
I'm hoping it's going to change theway in which the medical profession
starts to look at this condition andwe get engaged with it, get involved
in the research and, take that forward.
Are you aware of any usefulresearch being done at all, Briana?
(29:01):
Yes.
I will say so with Scratch That it wasa few women in their like mid-twenties
and I've thankfully gotten to interviewtwo of them for my future documentary.
Did you really?
Wow.
They've tried to gather asmuch research as they can.
I know they did the big push for, Ibelieve it's your Yellow Card to try
and get people to put in that theyhad symptoms and things happening.
(29:25):
So, again grassroots you know, peopleare trying to get it out there.
I believe there's possiblysomething happening in the UK.
Like I know NES, I don't thinkthey're doing anything specifically
for TSW, but I know that they'retrying to raise more awareness
with how to use, topical steroids.
With the colour codingfor different strengths.
(29:46):
Correct.
And then in the States, I'm actually partof a study that is still in the process.
There's no funding going intofiguring this out but we were lucky
enough to catch the curiosity ofone doctor and the study is ongoing.
(30:07):
We're still trying to gather theinformation that they need, but I'm
hoping it looks really promising.
They're trying to look ateverything from all angles.
So, I'm hoping that somethingdoes come out of it.
You just never know.
If I was in the world of dermatologytoday as a young doctor, I have
to say, I would embrace this.
This would be one of the most fascinatingareas of research to get involved in.
We don't understand itand it needs an answer.
(30:29):
Briana, I can't thank you enoughfor coming along to speak with
us today and for sharing suchpersonal and important experiences.
It's an absolute eye opener and, we're sograteful to you and I think our listeners
will equally share my gratitude there.
Let's hope in the near future, wemight see a more informed and more
(30:49):
empathetic medical profession helping ourpatients with this dreadful condition.
And I'd love to see somemore 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 humblingand a depressing, talk, reflecting on
our profession, but it's people like you,Briana, that, can help take us forward.
(31:12):
So, thank you.
I think that's, an incredibleplace to bring this episode to a
close and George and I do hope youfound it interesting and helpful.
Roger and I hope you'll join usnext time when we'll be discussing
more skin-related conditions.
We'd also like to thank our sponsor,AproDerm®, for all their help in putting
these Rash Decisions podcasts together.
(31:32):
We couldn't have done it without them.
And if you have enjoyed ourpodcasts, then do rate and review
us wherever you get them from.
It really does help usin putting them together.
We love to hear yourfeedback, so get in touch.
So, until the next timeit's goodbye from George.
Goodbye.
And it's goodbye from me, goodbye.
Hello and welcome to this Rash Decisionspodcast, where we look at skin-related
issues, conditions, and treatments inan interesting and informative way.
I'm Dr Roger Henderson.
I'm a GP with a long-standinginterest in this particular area
of health and I've been working inthe NHS for almost 40 years now.
And I'm Dr George Moncrieff.
I was also a GP although I'venow retired from my practice.
(00:31):
I'm a primary care advisor to the NationalEczema Society and a former Chair of
the Dermatology Council for England.
Now, this is the second of two podcaststhat George and I are doing about
topical steroids and if you were withus for the first, we do hope that
(00:55):
you found it helpful and interesting.
But this time, we've decided we'regoing to look at Topical Steroid
Withdrawal and some of the potentialproblems associated with this.
And in addition, George and I areabsolutely delighted to be joined
shortly by our special guestfor this episode, Briana Banos.
Briana is an amazing individual withan incredible journey involving topical
(01:18):
steroids, and she'll help us understandthe patient's perspective about topical
steroids and Topical Steroid Withdrawal.
So just getting right tothe chase here, George.
Topical Steroid Withdrawal, itsounds like a new condition,
but it really isn't, is it?
Topical Steroid Withdrawal Syndromeis not a new condition, although
(01:39):
it does seem to be recogniseda bit more frequently nowadays.
It was actually, first described, ordiscussed by Burry, a guy from Australia
back in 1973, and then properly puton the map in 1979, 45 years ago,
by Kligman and Frosch, who coinedthe term Topical Steroid Addiction.
(02:01):
They called it that because,typically, patients with this find
their topical steroid treatmentstarts to work less effectively.
And, understandably, initially thatencourages them to start using more
topical steroid, perhaps switchingto a stronger topical steroid, but
things continue to deteriorate.
The topical steroid is exhibiting whatdoctors call tachyphylaxis, a feature
(02:24):
of true addiction that the more youuse, the weaker the response becomes.
And I suspect that many people thinkTopical Steroid Withdrawal is something
that really just occurs when you've beenhammering the skin for months and months
with high doses of topical steroids.
But I suspect from what you'vesaid there, it's highly variable
(02:45):
and can happen relatively quickly.
Yeah.
Sometimes it first develops, as yousay, after years of successfully
using a topical steroid andthen it starts to come on.
Other times it comes on in just a coupleof weeks of starting a topical steroid.
It's remarkably variable and individual.
But it's a really debilitatingcondition that usually comes
(03:09):
on when the topical steroid isstopped, but it can develop during
treatment or even between treatments.
I would bet you a pie and a pintthat healthcare professionals
listening to this today, they'rethinking about their practice lists.
They may be thinking, "I'm surethat I don't have any patients
with Topical Steroid Withdrawalbecause it hardly ever happens."
(03:33):
How common is it?
Because it's not talked about a lot.
I'm having the opposite thought.
I'm thinking about those patients thatI missed and that I didn't recognise it.
Keep you awake at night, yeah.
I'm thinking, I wish I hadthought more about this then.
But recent studies have confirmedthat it is hugely under-recognised.
(03:56):
And they've demonstrated thateven up to 12% of patients, that's
over 1 in 10 people who use atopical steroid, are affected.
Wow.
Admittedly, that means that 88% ofpatients using topical steroids are
not affected, which is great news.
But, this is not rare.
This is happening.
This is really happening and I thinkwe do need to be very alert to it.
(04:19):
So is it Russian roulette,when we're prescribing to our
patients a topical steroid, asto who may or may not develop it?
Do we actually know what's goingon in the skin to trigger one
person but then not another?
If only I knew.
It does seem to be more common incertain groups, and I'll come on to that.
(04:40):
But in the last podcast,we talked about how topical
steroids weaken the skin barrier.
That probably has a part to play.
People whose skin barrier is perhaps morevulnerable, but that's people with eczema.
But furthermore, the potency ofa topical steroid is measured
by the degree of constrictionit causes in the small arteries.
(05:02):
Steroids cause the smallarteries to contract.
That's how we measure potent topicalsteroids, by how severe that is, or how
marked that is, and how long it lasts for.
Take facial skin, for example,that has a tremendous capacity
to vary its blood supply.
Some people, when they'reemotionally stressed, they go red.
Others don't.
(05:23):
Some people have an exaggeratedtendency to flush or blush easily.
This is highly individual andI just wonder whether something
similar might be going on here, anexaggerated vasomotor instability.
Which is [how] we control theblood flow to our skin, but in
some individuals that's not stable.
This is exaggerated by topical steroids,or even triggered by topical steroids.
(05:47):
In the early stages of TopicalSteroid Withdrawal Syndrome,
the skin becomes bright red.
Patients often describe this as feelingand looking like severe sunburn.
And this can be extremely unpleasantwith intractable itch, a burning
pain, which can be so severe that evenwashing with plain water is unbearable.
(06:13):
They daren't wet their skinbecause it's just too sore.
The thought of applying justa simple moisturiser, an
emollient, is utterly untenable.
Is that what I think I'veheard called Red Skin Syndrome?
Yes, this is called Red Skin Syndrome.
These changes can extend beyondthe area of skin that was being
(06:35):
treated with the topical steroid.
And when you dilate a blood vessel,it can become leaky, causing
fluid to escape into the tissues.
So these people sometimesdevelop swelling around their
ankles, and swelling of the skin.
Their face looks different, looks quitedeformed, it's disfiguring and this
(06:56):
change is called 'erythematoedematous'
It's a complicated word, but 'erythro'means red and 'oedematous' means swelling.
At the same time, thermoregulation, theability to keep your body temperature,
your core temperature balanced, goes AWOL.
And this can result in feelingsof being too cold or too hot.
(07:16):
Really unpleasant.
Sleep becomes disrupted dreadfully, manyexperience extreme fatigue, partly from
lack of sleep, but from all this going on.
Hardly surprising, they have emotionalfluctuations, and many go on to
develop severe depression and anxiety.
It's pretty nasty.
(07:36):
It then, at this stage, it canlook a bit like severe eczema.
And it's so easy to understand howhealthcare professionals, in particular,
jump to the conclusion that thisis simply undertreated eczema that
simply needs more topical steroids.
For somebody with this condition,that would be a disaster.
(07:59):
And if that's not unpleasant enough,it can then progress to more severe
patterns with lumps in the skin, massiveflaking of the skin, which some people
call snowing, which just gives yousome idea of how dramatic that is.
Deep, extremely painful cracks inthe skin, and dramatic crusting.
(08:20):
This is not infected eczema andantibiotics generally don't help here.
Topical Steroid Withdrawal Syndromeis different from an eczema relapse.
For a start, it extends beyond the areaof skin that was being treated, but I
have seen it look far worse than theworst cases of eczema I've ever seen.
(08:43):
It's a wretched condition.
I suppose the elephant in the roomhere, that we're all thinking of,
and you did touch on it; someone withknown established eczema who has been
on topical steroids and probably othertreatments as well, turns up to their
(09:03):
doctor and says, "look at this skin.
It's absolutely awful."
Unless that healthcare professionalis dialled in to the possibility
of Topical Steroid Withdrawal,what are they going to do?
Are they going to say, "wow, thiseczema is completely out of control,
we're going to have to doubledown" and you then are just hosing
the fire with petrol, aren't you?
(09:24):
Can you imagine, you're so desperate.
You're finally going to see someone youhope is going to be able to help you,
empathise and understand and be moreknowledgeable than you, and you encounter
that sort of disempowering ignorance.
It is awful to thinkthat is what's going on.
And slightly depressing if I'm honest.
And one thing we haven't touchedon, does it have a predilection
(09:46):
for various parts of the skin?
Yes, strangely, it does.
It usually involves the head andneck or sometimes the genitalia.
I've never seen it onthe palms and the soles.
We'll have to ask our expertabout that when we introduce her.
It occurs mostly in young people.
I've even seen this in children.
(10:07):
And the most common group arewomen, I think, in their twenties
to forties, I would say that'sprobably the greatest risk group.
And the awful thing is it can lastfor months or years, after stopping
the topical steroid, the skin isrendered unstable and abnormal
(10:27):
with a predilection to havingflares brought on by a variety of
circumstances and totally unpredictable.
That can be really disarmingand it's triggered this change
that just goes on and on and on.
And is it simplistic of me to thinkthat the stronger and more potent
the topical steroid, the greaterthe likelihood of TSW developing?
(10:53):
Yes, the more potent the topicalsteroid, the more likely it is
that, that treatment will cause it.
But it's actually more common, in myexperience, with the mild topical steroids
because they're used much more frequently.
Okay.
And we should also be aware of theinadvertent use of topical steroids.
For example, the residue leftoverif you've treated, as a caregiver,
(11:13):
you've treated your child,there's a bit left on your hands.
You think you've washed your hands,but there's a residue there, and you
go and touch your face at bedtime,and that begins to set things up.
Then you might go and get your owntopical steroid to calm that down,
and you start this vicious cycle.
Also there are what Icall 'hidden steroids'.
A lot of treatments don't advertisethat they have a steroid in them.
(11:34):
So for example, Daktacort® or Fucidin®H, the 'cort' is hydrocortisone
and the 'H' is hydrocortisone.
So sometimes the steroid ishidden and people aren't thinking,
"I'm putting a steroid on here."
Another important point is actuallysometimes, the potency of a
topical steroid is not obvious.
The packaging needs to be improved,but for example, hydrocortisone, we
(11:56):
all think of as being a weak, mildtopical steroid, and it usually is.
But that's hydrocortisone acetate.
Acetate, yeah.
And there's hydrocortisone butyrate,which is Locoid®, and that's a potent
topical steroid, so there are traps there.
And increasingly, we're gettingconcerned about people who are
buying, illicit topical steroidsto help with, for example, their
(12:18):
dark skin to try and bleach it.
There's a product calledAbido, which you can get.
Or treatments to treat acnethat are acquired illicitly
and they have steroids in them.
And, I suspect that our professionhasn't covered itself with glory
with Topical Steroid Withdrawaland is viewed as a rare condition.
(12:41):
And the problem, if you use theword rare, people can start to think
well, I'm never going to see it.
Although I did listen to a speaker,who deals with rare diseases, the
other day who said that statistically1 in 17 people in the UK have what is
technically called a 'rare condition'.
Which my jaw dropped open when Iheard that it's not that rare, but
(13:01):
I think Topical Steroid [Withdrawal]really fits that bill, doesn't it?
No, there are so many rare conditionsthat you commonly encounter a rare
condition, is what he's saying.
Exactly, it fits the billthat it's being missed.
But what I'm saying is Topical SteroidWithdrawal Syndrome is not rare.
Yeah.
And I agree.
There are a lot of doctors out there,and our profession has been guilty of
this in spades, for being reluctantto acknowledge it even exists.
(13:27):
As a result it's oftennot diagnosed or rejected.
Therefore, because it's notdiagnosed, it remains rare in their
practice, as if it doesn't exist.
I was never taught aboutit, that's for sure.
No, you're not taught.
It's not considered in the differentialdiagnosis, and the cycle goes on.
The problem just keeps getting repeated.
(13:48):
It's thought to be rare because it'snot diagnosed, and because it's not
diagnosed, it's rarely thought about.
Can you imagine, though, just howgrim it must be, to have an extremely
painful, bright red face that goesonto becoming cracked, crusty,
swollen, and severely disfigured.
It's, unimaginable.
(14:09):
And to add to that intolerable burden ofsuffering, how it must feel, when you go
to see a health professional, who blamesyou for being so stupid as to refuse
to continue to use the topical steroid.
So often I hear the patient'sreluctance is the blame for the
worsening and severe skin problems.
And then the doctor-patient relationshipjust breaks down and becomes adversarial.
(14:34):
It's awful, all round.
I've even heard of cases where parentshave been accused of child abuse because
they recognise that topical steroids aredriving their child's skin problem, but
they refuse to accept the medical advice.
Sensibly, they refuse to use strongertopical steroid treatment, but they've
gone through the child abuse process.
We just don't understandthis condition enough, yet.
(14:57):
There appears to be very little researchgoing on by the medical profession.
To make matters worse, there'scurrently very little we can do to
help other than say "stop the steroidsand eventually it will get better."
This desperately needs someintelligent dialogue, and even
more, some quality research.
(15:19):
So I think at that point, I would reallylike to introduce our guest speaker.
Over to you, Roger.
Briana, who we mentioned at the top ofthe show, has been unfortunate enough
to have suffered from severe eczema andis currently on high-intensity treatment
for that to help keep it in control.
(15:41):
Now, unlike George and I, whoare blissfully ignorant about
experiencing Topical SteroidWithdrawal, she has unfortunately
had terrible problems in this area.
And I think perhaps some of the thingsthat George and I have talked about
have really resonated with her journey.
Briana's currently studying filmdirecting, a very busy schedule,
(16:02):
but she's taking a break fromher studies to join us today.
And we really do thank you somuch for coming along, Briana.
I suppose in a nutshell,just tell us your story.
What are your experiences inthe real world about, topical
steroids and their withdrawal?
Yeah.
How long is this podcast?
(16:22):
[laughter]
I mean, honestly, what you guys havebeen talking about is so important.
My journey just starting withprescription topical steroids
was really when I was much older.
I had eczema growing up, in thenormal 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
(16:46):
that would cause the most annoyance.
But, at 22, I started a job ona cruise ship performing and,
I don't know what happened.
I believe it was probably a rampantfungal infection, that I had caught.
But I went to a dermatologist, shestated, "I know exactly what you need."
and then just threwthe kitchen sink at me.
(17:07):
I was on different antifungals andantibiotic and antifungal cream, a
topical steroid and two differentantihistamines and Protopic®.
So I just had like a slew of thingsand for about three years, I was
very up and down having to use allof these things and the spots where
(17:29):
my eczema was, started to spread.
And at one point, she didn'treally even know what to do.
I was put on ciclosporin for aboutsix months, but it was really
kicking my kidneys, so went off ofthat, [it] wasn't really helping.
I had gotten married near the end of 2014and decided, you know what, I'm having
(17:50):
to like tiptoe like eggshells around myskin, why don't I just give myself a break
from all of this medication?, and whenI tried to stop, I found out I couldn't.
Anytime I stopped using the steroidit would just start spreading.
It was spread through my wrists.
It would spread around my pelvicregion, through my back and then my
(18:10):
eyes started swelling really badly.
And then for about, almost 2months, it was just questions.
Searching the internet, goingto 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'sgoing on, it must be an allergy.
(18:31):
And I stumbled upon TopicalSteroid Withdrawal online, [by]
finding someone on YouTube.
And that's the biggest thingwith 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 andit was mostly YouTube and a very small
Facebook group and a fairly brand newITSAN, the International Topical Steroid
(18:56):
Awareness Network and from there, I justknew, that's what I was going through.
My last steroid, oral was January 25th2015 and I haven't touched them since.
The withdrawal process is gruesome.
I mean, I lost my hair.
My hair was falling out.
(19:17):
I was red from head to toe.
I was oozing and crusting andsticking to my clothing and my
sheets and I couldn't work anymore.
So financially, it's completelydebilitating and then it puts more
pressure on your family and your partnerto take care of you and hold that end up.
You know, my marriage fellapart through all of this.
[It's] really, really hard on people.
(19:40):
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 toand it was a teaching hospital and I was
getting excited that someone would, youknow, be able to talk to me about this
and it was just completely pushed aside.
My history wasn't even taken well andthey just offered me, like more steroids.
(20:00):
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 Ibrought in, no one cared to look at
it or read it or take the time totalk to me about it, which is what
you said, breaks down the trust.
Because if I can't talk to my doctorabout it, they're not listening to
(20:22):
me, so why should I listen to them?
That's the kind of battlefor about eight years.
It's so sad and sodisempowering, 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, when talking to people?
Very, very slowly.
(20:42):
The only thing that's really changingis 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 thanI am and they've just been blowing it up.
And people see this andthey become aware of it.
And I think that's probably the growingissue as well as now people with,
(21:06):
you know, skin conditions, especiallyeczema, they're going to their doctor
and asking, "is this a concern?"
and when their doctor islike, "no, this is dumb."
You have research callingus 'steroid phobic' or, you
know, corticosteroid phobic.
Why on earth now is that patient goingto look at that doctor and go, "oh,
okay, I can really trust this person?"
(21:28):
So it just, it createsan even bigger barrier.
I believe nowadays some doctorsare, I can't say learning about it.
Like you said, you didn't learnabout it in school or in textbooks.
I've even spoken to and interviewedsome doctors who are recently out
of school and they're like, "wedidn't learn about it in school."
We didn't learn aboutdermatology, I'm afraid.
(21:50):
Yeah, so it's not being disseminatedwhere it should be, and so I feel
very lucky that I've intervieweddoctors who do know about it and want
to be a part of the conversation.
But sadly, I don't think thegeneral, you know, GP, paediatrician,
even dermatologist, I just don'tthink they're very knowledgeable.
(22:13):
Some may be curious and hopefully wecan 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 theprofession acknowledging this.
There's, for example, a statement by theNES, the National Eczema Society and the
(22:33):
British Association of Dermatologists.
In my view, definitely acknowledging it.
It's there.
And feeling that we needto move in that direction.
There's an Americanorganisation who produced the
equivalent of our NICE report.
Who, I think back in 2015, That's right.
Yes, American Academy of Dermatology.
(22:53):
Thank you.
Back in 2015, they pretty well dismissedit and barely mentioned it and in the more
recent article, or guideline on atopiceczema, they do acknowledge it a bit.
But it really is just the earlyroots of some acknowledgement
that this is something thatwe need to be thinking about.
No, this is not that uncommon.
(23:14):
This is devastating and this needs arevolutionary way of thinking about
things and helping this group of people.
Seriously, they know more about itthan we ever will and, they know what
it feels like and, they need help andsupport in so many areas of their lives.
Absolutely.
Briana, just, in your extensiveexperience of talking to people,
(23:34):
unfortunate enough to go through this;did they sort of say to you that one
of the stock responses from healthcareprofessionals is to instantly become
defensive and the barriers come up?
Because that unfortunately canhappen, you know, in a whole range
of, medical conditions when healthcareprofessionals are challenged.
(23:54):
Does it just become prettyadversarial quite quickly?
Sadly, that's what I mostly see.
You get the odd post wherethey're like, "oh my goodness.
I want to share this doctor'sname everywhere because
they're so wonderful and I wisheverybody could see this doctor."
But a lot of the times it's just verydisheartening, heartbreaking posts
(24:18):
where someone is just so desperatethey didn't even want to go to the
doctor, but they knew they had to.
And the second they go in, they'rejust told, "this isn't, this isn't your
problem, this is not what's happening."
And usually they're either offereda topical steroid or nowadays you do
have the, you know, immunosuppressantsand the biologics and things.
(24:38):
And people just get scared becausethey're like "this one pharmaceutical
drug did this to me and it's not beingacknowledged that it did this to me.
I don't know what theseother drugs are going to do."
So people tend to just shyaway from any help whatsoever,
which is also detrimental.
Like if you do have a bacterialinfection and it needs to be taken
care of, and you're not going tothe doctor to get it taken care of,
(25:00):
it's just very, it's very scary.
It's sad that, you know, thepeople that we should go to for
help, we feel like we can't.
Yeah, it's almost a plague on alltheir houses, really, understandably.
But what an indictmentof our profession, Roger.
Absolutely, it's deeply,depressing, if I'm bluntly honest.
(25:20):
Are you trying to highlight,awareness, however you can, with
healthcare professionals or theones that want to listen, Briana?
I mean, I've been trying to do arange of things since the beginning.
I didn't know what I was doing.
I have a writing background and I wasa performer and I tried to, help our
(25:44):
community first of all and then when Icreated 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 andthey would help, you know, take me to
different conferences if they could,as a patient advocate, and I would
start to talk to different doctors.
(26:04):
And I've been so grateful to be ableto connect with a lot more doctors.
I've been to Washington DC twicenow 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 thatare already in the realm of being
(26:25):
curious that I end up speaking to.
The ones that have no idea about it areusually the derm or the allergist or
someone that I have to go to becauseI need something and it's very hit
and miss, sadly, talking to them.
So it's been a mixed bag when itcomes to talking to professionals.
And if anyone listening would likemore information to look at it in a bit
(26:49):
more detail, do you have any pointersas to where the first port of call
might be useful for them to look at?
I usually always point peopleto www.itsan.org, I T S A N.org.
It is our non-profit for this condition.
It is based in the States, but theinformation can be used anywhere.
(27:10):
They, have so much on thewebsite, as much as they can.
Like any new research and thingslike that, what to look for.
Especially if you're someone that's beenusing topical steroids for years and
you've had potency building up higher andhigher, you know, they just are trying
to showcase what the problem is and whatthey're trying to do to solve the problem.
(27:33):
So that's probably the first placeand then I have my documentary.
It's more just to help maybethat patient feel less alone.
If they do feel that they're goingthrough it, or they are going
through it, or their family ishaving to watch them go through it.
It has just different stories frompatients all around the world and a
few doctors who talk on the topic.
(27:56):
Where can that be seen?
It's on my YouTube channeljust under, Briana Banos.
It's called 'Preventable,Protecting Our Largest Organ.'
Fantastic.
I love the ITSAN website.
It's so reasonable.
It's so informed.
It's balanced.
It's fair.
(28:17):
But there's another website that I'venoticed, 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.
Correct.
And they've got, again, vastamounts of information there.
(28:38):
Stories and details of what thisis all about and if anything is
going to make your heart reallysad, it's, going to the website.
I'm hoping it's going to change theway in which the medical profession
starts to look at this condition andwe get engaged with it, get involved
in the research and, take that forward.
Are you aware of any usefulresearch being done at all, Briana?
(29:01):
Yes.
I will say so with Scratch That it wasa few women in their like mid-twenties
and I've thankfully gotten to interviewtwo of them for my future documentary.
Did you really?
Wow.
They've tried to gather asmuch research as they can.
I know they did the big push for, Ibelieve it's your Yellow Card to try
and get people to put in that theyhad symptoms and things happening.
(29:25):
So, again grassroots you know, peopleare trying to get it out there.
I believe there's possiblysomething happening in the UK.
Like I know NES, I don't thinkthey're doing anything specifically
for TSW, but I know that they'retrying to raise more awareness
with how to use, topical steroids.
With the colour codingfor different strengths.
(29:46):
Correct.
And then in the States, I'm actually partof a study that is still in the process.
There's no funding going intofiguring this out but we were lucky
enough to catch the curiosity ofone doctor and the study is ongoing.
(30:07):
We're still trying to gather theinformation that they need, but I'm
hoping it looks really promising.
They're trying to look ateverything from all angles.
So, I'm hoping that somethingdoes come out of it.
You just never know.
If I was in the world of dermatologytoday as a young doctor, I have
to say, I would embrace this.
This would be one of the most fascinatingareas of research to get involved in.
We don't understand itand it needs an answer.
(30:29):
Briana, I can't thank you enoughfor coming along to speak with
us today and for sharing suchpersonal and important experiences.
It's an absolute eye opener and, we're sograteful to you and I think our listeners
will equally share my gratitude there.
Let's hope in the near future, wemight see a more informed and more
(30:49):
empathetic medical profession helping ourpatients with this dreadful condition.
And I'd love to see somemore 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 humblingand a depressing, talk, reflecting on
our profession, but it's people like you,Briana, that, can help take us forward.
(31:12):
So, thank you.
I think that's, an incredibleplace to bring this episode to a
close and George and I do hope youfound it interesting and helpful.
Roger and I hope you'll join usnext time when we'll be discussing
more skin-related conditions.
We'd also like to thank our sponsor,AproDerm®, for all their help in putting
these Rash Decisions podcasts together.
(31:32):
We couldn't have done it without them.
And if you have enjoyed ourpodcasts, then do rate and review
us wherever you get them from.
It really does help usin putting them together.
We love to hear yourfeedback, so get in touch.
So, until the next timeit's goodbye from George.
Goodbye.
And it's goodbye from me, goodbye.
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