December 27, 2024 • 13 mins
Swimmers are more likely to get eczema because of the drying nature of chlorine. 31 Million Americans have eczema, an itchy skin condition. What if the solution to your itchy skin is causing more harm than good? Join me, Kelly Palace, for an authentic look at my chilling encounter with topical steroids. It all began with a little tube of ointment prescribed for the eczema caused by my swimming goggles—a quick fix that spiraled into a full-blown nightmare. As I navigated through this ordeal, my reliance on stronger steroids grew, leading to a debilitating condition known as topical steroid withdrawal syndrome. My story sheds light on the often-hidden dangers of these treatments and challenges the notion that they are a cure-all for eczema and contact dermatitis.
This episode is more than just a personal cautionary tale; it is a wake-up call for anyone who trusts topical steroids to treat their skin conditions. I reveal the sobering truth about how these medications merely mask underlying issues like allergies or stress and the lack of awareness in the medical community about alternative treatments. Through personal anecdotes and insights from medical professionals, we expose the urgent need for change in how eczema is treated, impacting millions of lives. Tune in to discover the real story behind topical steroids and why it's crucial to look beyond the surface.
- Kelly's experience with eczema due to swimming
- The role and risks of topical steroids
- Understanding topical steroid withdrawal syndrome
- Kelly's connection with Dr. Rappaport, Dermatologist
- Co-Founding the International Topical Steroid Awareness Network www.ITSAN.org
- Encouragement to seek non-steroidal alternatives
- Preventable: A Documentary about TSWS by Briana Banos
Email us at HELLO@ChampionsMojo.com. Opinions discussed are not medical advice, please seek a medical professional for your own health concerns.
Mark as Played
Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:02):
Hello friends, this is Kelly Pallas, your host of
the Champions Mojo podcast today.
Well, we're going to talk aboutsomething that is a harrowing
experience that I went through,and it was caused by my goggles,
and I would like to speak withany swimmer that has ever had
eczema or itchy skin or thoughtabout using something to treat
(00:24):
your itchiness from swimming.
So this is a little bit of awarning.
Some of you who know me wellknow this story, but there were
many, many years where I wasincapacitated from being able to
swim, being able to leave thehouse.
I was in what I call a livinghell, a nightmare of a skin
condition, and this is how itstarted.
(00:46):
So I, like all swimmers, youspend hours in your goggles and
I got, you know, deep ringsaround my eyes for my goggles,
and I'd try to change goggles orlighten the tightness, the
pressure on them, and I ended upgetting eczema around my eyes.
I went to my eye doctor andthey gave me a little tiny tube
of something called FML, whichis a light topical steroid.
(01:09):
So a topical steroid is thenumber one treatment for eczema
or contact dermatitis.
So sometimes you don't have tohave eczema, you can just have a
touch something or come incontact with something that
makes you have an irritant andthen you get an itchy rash that
breaks out and you know theycall eczema the itch that rashes
.
Eczema is super common 37million Americans have adult
(01:34):
Americans have eczema.
Adult and children have eczema.
And so the eye doctor gave methis.
For my eyes it was little,tiniest little tube, but I
started using it and, man, thatstuff is awesome.
It cleared it right up.
Topical steroids came to marketback in the 1950s.
So it's been you know 75 yearssince they were brought to
(01:56):
market, which means they werenot tested.
That's what the research says.
They were not properly tested.
They knew that they have ananti-inflammatory effect and
they cleared up a rash, but thenthey gave it just the warning
that, well, it can thin yourskin.
But it does a whole lot morethan just thin your skin.
And topical steroids come in themost innocuous over-the-counter
(02:19):
drug called cortisone.
You know hydrocortisone.
You probably have a tube inyour medicine cabinet right now
and sometimes they even have alittle Scooby-Doo figure on them
.
They're so you know they're.
The dermatologist that gave metopical steroids said it's safe
enough to put on a baby, whichis a big giant lie.
So the topical steroid problemthat I had started around my
(02:43):
eyes when I had this eczema andthat cleared it up, but then I
kept needing to use it to keepthe redness away from my eyes
and then the eczema startedspreading where my goggles
hadn't even affected me, from myeyes down to my around my mouth
, down to my neck, and then I'dhave to use more topical
steroids there and then itstarted spreading to different
parts of my body until I wastaking steroid shots, steroid,
(03:07):
heavier and heavier doses ofsteroid, topical steroid
creamsids.
So what?
The warning here is that topicalsteroids do not cure eczema.
Eczema or contact dermatitis issomething that is usually
caused by something you might beeating, something you might be
touching, stress, lack of sleep,but it is.
(03:28):
Topical steroids do not cureeczema.
They do not cure contactdermatitis.
They might clear it up in theshort term, but there is
something called topical steroidwithdrawal syndrome, which is
my absolute nightmare.
So, topical steroid withdrawalsyndrome.
You can Google it.
There are thousands of YouTubevideos, youtube shorts,
(03:49):
instagram posts on topicalsteroid withdrawal, and this is
one of those things.
In the medical community, wehave a lot of doctors in our
family that went through acertain dermatology rotation.
They said they never talk aboutit because dermatologists have
basically one tool in theirtoolkit or they did historically
one tool in their toolkit.
(04:10):
When an itchy person comes in,they want to hit them with
steroids, either topical, or apill or a shot.
And I had all of them.
I had pills, I had shots, I hadsteroid creams, just trying to
get this rash that was spreadingall over my body to go away.
And they just kept giving mesteroid after steroid, topical
steroid shots, creams.
So what happens with topicalsteroid withdrawal is it can
(04:33):
affect, just like if you smokecigarettes all your life.
Most people are going to getsome type of a cancer lung
cancer but there are people thatcan smoke their whole life and
never get cancer from cigarettes.
But topical steroid withdrawalsyndrome is still in such a new
place.
It's finally getting recognized, finally by the dermatology
(04:57):
community, the American Academyof Dermatology, the National
Eczema Association.
I went through topical steroidwithdrawal syndrome 15 years ago
.
15 years ago and the way that Ifigured out what was going on
historically, prior to being aor post being a Division I head
swimming coach.
I worked in the pharmaceuticalindustry so I knew how to
(05:18):
research clinical medicaljournals and I was having just
this continuous skin issue wherewhen I stopped my topical
steroids, my skin would turnbright red and that was me
needing more of the cream tocontrol the inflammation.
So at first I thought, you know, I live in Florida, maybe I was
(05:39):
getting too much sun.
I even thought, well, mycomputer screen, I'm on my
computer a lot.
Maybe that's it.
Maybe I have a hypersensitivityto sun, maybe I'm allergic to
the, you know, air freshenersand grocery stores or whatever.
I thought it was some chemicalsensitivity that I kept getting
bright red, especially around myeyes, which was where I
(06:00):
originally used topical steroidsbecause of my goggle marks and
my goggle itchiness, contactdermatitis.
And I was researching anarticle one night and I came
across an article entitledeyelid dermatitis to red skin
syndrome to cure.
And I thought, wow, eyeliddermatitis sounds exactly like
what I have.
(06:20):
And then I get red skin when Idon't use my topical steroids
and I want the cure.
So I am going to contact thedoctor that did this research.
So I reached out to the doctorthat did this research.
He is a dermatologist locatedin Southern California and we
became friends.
I flew out to see him.
He said you are going throughtopical steroid addiction, which
(06:44):
is just where your skin becomesaddicted to your topical
steroids and you are going toneed to go off of these.
He said it's not going to bepleasant.
It's going to be a longwithdrawal period we don't know
exactly how long.
So this was Dr Marvin Rappaport.
He is the authority on topicalsteroid withdrawal syndrome.
Back then it was being calledred skin syndrome, but they
(07:06):
decided it was very specificallynow needing to be labeled
topical steroid withdrawalsyndrome.
So I went off topical steroidsin 2009.
I went off topical steroids in2009.
And for two years I wasabsolutely housebound, bedridden
(07:26):
.
What happened to me?
My whole body.
Because your skin this is whatwe're just finding out, or just
really coming to realize.
Your skin is one organ.
So just because you have abunch of inflammation on your
eyelids and you've used a lot oftopical steroids there, you can
have a reaction over yourentire body because your skin is
all connected.
So because I had had my eczemaspread from my eyelids all the
(07:48):
way down my neck, all over mybody, and I had used topical
steroids all over my body, whenI went into withdrawal, my full
body reacted with the biggestinflammation that you could
possibly get.
My skin was coming off inflakes, it was red, it was
oozing, it was impossible to betouched.
(08:09):
I couldn't wear clothes.
That's why you're houseboundwhen you're running around
without any clothes on, becauseclothes hurt your skin.
The itch is described in topicalsteroid as a soul-sucking itch.
The itch was insane.
It was bone deep.
Now when I get a mosquito bitenow or I have a little you know
itch of some kind now it's like,oh, that isn't even an itch.
(08:31):
It's like the differencebetween swimming 10 400 IMs and
swimming you know 10, 25s onfive minutes.
There is a huge differencebetween topical steroid
withdrawal itch and this kind ofnormal itch.
So it was a really horribleplace.
The mental health issues thatcome from topical steroid
withdrawal syndrome are many,many.
(08:51):
The good news is that after acouple of years I began to have
something called you know whereyou would flare and then you
would heal.
So I went through several yearsafter that where I would have
quiet periods, my skin wouldkind of be healed up and then I
would have another flare and itwould be very itchy and my skin
would be cracked and bleedingand dry.
There were probably about thefirst five years where I never
(09:13):
even took a photo of myselfbecause it was so ghastly and so
horrible than I wish I had,because there are a lot of
people now you know again, thisis 15 years ago there are a lot
of people now that take a lot ofpictures if you're interested.
But I wanted to tell my storybecause there are a lot of
swimmers have itchy skin.
(09:34):
They have a response tosomething either with the
chlorine, with the dry winteritch with goggles around their
eyes.
But please just you know find adifferent way than topical
steroids.
Topical steroids are labeledthat they are only to be used a
very short amount of time.
Sometimes it says two weeks,sometimes it says two weeks, but
(10:07):
even two weeks.
We have people in theorganization that helps people
with this that have had topicalsteroid withdrawal for years
that only used for two weeks.
It is not the cure.
It's actually a very potentsubstance to put on your skin.
Years ago, I started anorganization called the
International Topical SteroidAwareness Network the
International Topical SteroidAwareness Network, and it was
co-founded by me and DrRappaport, and we started it in
2009 unofficially, and then webecame a nonprofit and got the
(10:30):
501c3 as a full charity.
You can check this out at ITSANI-T-S-A-N, as in International
Topical Steroid AwarenessNetwork org.
I-t-s-a-norg.
We started that in 2012.
So we've been around 12 years.
We are in 41 countries aroundthe world.
(10:52):
Our Facebook groups have tensof thousands of people going
through topical steroidwithdrawal.
It is a devastating conditionand it's totally preventable.
My friend, brie Bonos, justmade a beautiful video called
Preventable tells the wholestory of topical steroid
(11:13):
withdrawal.
But I would not wish topicalsteroid withdrawal on anyone.
It is just horrific.
My flares and healing took me13 years to be completely healed
.
I've only been completelyhealed from my skin for three
years and, you know, after awhile I started getting back
(11:35):
into taking some photos.
But you know, if you've seenphotos of me, maybe at a swim
meet, or you've seen me at aswim meet, you thought what's
going on with Kelly's skin?
Um, it just is very.
You get something calledelephant skin.
Your skin is very red, it'svery thick, it's um, very itchy
and it this condition affectsbabies, it affects the elderly,
it affects every ethnicity andit is completely preventable.
(11:59):
So I just wanted to put thatout here as a warning to
swimmers, because we are theones that have eczema.
There are many better optionsthan topical steroids and I
really, truly believe, as theco-founder of it's San, that one
day topical steroids will becompletely banned from use.
That is how awful they are, andwe've come so far in 12 years.
(12:22):
Initially, when we launched ourcharity, it was, you know, we
were considered internet quacks.
No one had ever heard of it.
The American Academy ofDermatology threw my husband and
I out of a meeting in SouthernCalifornia.
Now we are invited to theAmerican Academy of Dermatology
meetings.
The National Eczema Associationtold us that we were insane.
Now we're partnering with them.
They recognize this condition.
(12:43):
This is really truly somethingthat's real and you know as a
love the love that I have for myswimming community.
If I could just stop one personfrom using topical steroids.
If this doesn't resonate withyou or you know somebody that
has eczema, they don't even haveto need, they don't even need
to be a swimmer.
Anyone can get topical steroidwithdrawal syndrome and it is
(13:05):
just something that I reallylove everybody to avoid.
So thanks for listening andhope to see you on the pool deck
soon.
Bye-bye.
Hello friends, this is Kelly Pallas, your host of
the Champions Mojo podcast today.
Well, we're going to talk aboutsomething that is a harrowing
experience that I went through,and it was caused by my goggles,
and I would like to speak withany swimmer that has ever had
eczema or itchy skin or thoughtabout using something to treat
(00:24):
your itchiness from swimming.
So this is a little bit of awarning.
Some of you who know me wellknow this story, but there were
many, many years where I wasincapacitated from being able to
swim, being able to leave thehouse.
I was in what I call a livinghell, a nightmare of a skin
condition, and this is how itstarted.
(00:46):
So I, like all swimmers, youspend hours in your goggles and
I got, you know, deep ringsaround my eyes for my goggles,
and I'd try to change goggles orlighten the tightness, the
pressure on them, and I ended upgetting eczema around my eyes.
I went to my eye doctor andthey gave me a little tiny tube
of something called FML, whichis a light topical steroid.
(01:09):
So a topical steroid is thenumber one treatment for eczema
or contact dermatitis.
So sometimes you don't have tohave eczema, you can just have a
touch something or come incontact with something that
makes you have an irritant andthen you get an itchy rash that
breaks out and you know theycall eczema the itch that rashes
.
Eczema is super common 37million Americans have adult
(01:34):
Americans have eczema.
Adult and children have eczema.
And so the eye doctor gave methis.
For my eyes it was little,tiniest little tube, but I
started using it and, man, thatstuff is awesome.
It cleared it right up.
Topical steroids came to marketback in the 1950s.
So it's been you know 75 yearssince they were brought to
(01:56):
market, which means they werenot tested.
That's what the research says.
They were not properly tested.
They knew that they have ananti-inflammatory effect and
they cleared up a rash, but thenthey gave it just the warning
that, well, it can thin yourskin.
But it does a whole lot morethan just thin your skin.
And topical steroids come in themost innocuous over-the-counter
(02:19):
drug called cortisone.
You know hydrocortisone.
You probably have a tube inyour medicine cabinet right now
and sometimes they even have alittle Scooby-Doo figure on them
.
They're so you know they're.
The dermatologist that gave metopical steroids said it's safe
enough to put on a baby, whichis a big giant lie.
So the topical steroid problemthat I had started around my
(02:43):
eyes when I had this eczema andthat cleared it up, but then I
kept needing to use it to keepthe redness away from my eyes
and then the eczema startedspreading where my goggles
hadn't even affected me, from myeyes down to my around my mouth
, down to my neck, and then I'dhave to use more topical
steroids there and then itstarted spreading to different
parts of my body until I wastaking steroid shots, steroid,
(03:07):
heavier and heavier doses ofsteroid, topical steroid
creamsids.
So what?
The warning here is that topicalsteroids do not cure eczema.
Eczema or contact dermatitis issomething that is usually
caused by something you might beeating, something you might be
touching, stress, lack of sleep,but it is.
(03:28):
Topical steroids do not cureeczema.
They do not cure contactdermatitis.
They might clear it up in theshort term, but there is
something called topical steroidwithdrawal syndrome, which is
my absolute nightmare.
So, topical steroid withdrawalsyndrome.
You can Google it.
There are thousands of YouTubevideos, youtube shorts,
(03:49):
instagram posts on topicalsteroid withdrawal, and this is
one of those things.
In the medical community, wehave a lot of doctors in our
family that went through acertain dermatology rotation.
They said they never talk aboutit because dermatologists have
basically one tool in theirtoolkit or they did historically
one tool in their toolkit.
(04:10):
When an itchy person comes in,they want to hit them with
steroids, either topical, or apill or a shot.
And I had all of them.
I had pills, I had shots, I hadsteroid creams, just trying to
get this rash that was spreadingall over my body to go away.
And they just kept giving mesteroid after steroid, topical
steroid shots, creams.
So what happens with topicalsteroid withdrawal is it can
(04:33):
affect, just like if you smokecigarettes all your life.
Most people are going to getsome type of a cancer lung
cancer but there are people thatcan smoke their whole life and
never get cancer from cigarettes.
But topical steroid withdrawalsyndrome is still in such a new
place.
It's finally getting recognized, finally by the dermatology
(04:57):
community, the American Academyof Dermatology, the National
Eczema Association.
I went through topical steroidwithdrawal syndrome 15 years ago
.
15 years ago and the way that Ifigured out what was going on
historically, prior to being aor post being a Division I head
swimming coach.
I worked in the pharmaceuticalindustry so I knew how to
(05:18):
research clinical medicaljournals and I was having just
this continuous skin issue wherewhen I stopped my topical
steroids, my skin would turnbright red and that was me
needing more of the cream tocontrol the inflammation.
So at first I thought, you know, I live in Florida, maybe I was
(05:39):
getting too much sun.
I even thought, well, mycomputer screen, I'm on my
computer a lot.
Maybe that's it.
Maybe I have a hypersensitivityto sun, maybe I'm allergic to
the, you know, air freshenersand grocery stores or whatever.
I thought it was some chemicalsensitivity that I kept getting
bright red, especially around myeyes, which was where I
(06:00):
originally used topical steroidsbecause of my goggle marks and
my goggle itchiness, contactdermatitis.
And I was researching anarticle one night and I came
across an article entitledeyelid dermatitis to red skin
syndrome to cure.
And I thought, wow, eyeliddermatitis sounds exactly like
what I have.
(06:20):
And then I get red skin when Idon't use my topical steroids
and I want the cure.
So I am going to contact thedoctor that did this research.
So I reached out to the doctorthat did this research.
He is a dermatologist locatedin Southern California and we
became friends.
I flew out to see him.
He said you are going throughtopical steroid addiction, which
(06:44):
is just where your skin becomesaddicted to your topical
steroids and you are going toneed to go off of these.
He said it's not going to bepleasant.
It's going to be a longwithdrawal period we don't know
exactly how long.
So this was Dr Marvin Rappaport.
He is the authority on topicalsteroid withdrawal syndrome.
Back then it was being calledred skin syndrome, but they
(07:06):
decided it was very specificallynow needing to be labeled
topical steroid withdrawalsyndrome.
So I went off topical steroidsin 2009.
I went off topical steroids in2009.
And for two years I wasabsolutely housebound, bedridden
(07:26):
.
What happened to me?
My whole body.
Because your skin this is whatwe're just finding out, or just
really coming to realize.
Your skin is one organ.
So just because you have abunch of inflammation on your
eyelids and you've used a lot oftopical steroids there, you can
have a reaction over yourentire body because your skin is
all connected.
So because I had had my eczemaspread from my eyelids all the
(07:48):
way down my neck, all over mybody, and I had used topical
steroids all over my body, whenI went into withdrawal, my full
body reacted with the biggestinflammation that you could
possibly get.
My skin was coming off inflakes, it was red, it was
oozing, it was impossible to betouched.
(08:09):
I couldn't wear clothes.
That's why you're houseboundwhen you're running around
without any clothes on, becauseclothes hurt your skin.
The itch is described in topicalsteroid as a soul-sucking itch.
The itch was insane.
It was bone deep.
Now when I get a mosquito bitenow or I have a little you know
itch of some kind now it's like,oh, that isn't even an itch.
(08:31):
It's like the differencebetween swimming 10 400 IMs and
swimming you know 10, 25s onfive minutes.
There is a huge differencebetween topical steroid
withdrawal itch and this kind ofnormal itch.
So it was a really horribleplace.
The mental health issues thatcome from topical steroid
withdrawal syndrome are many,many.
(08:51):
The good news is that after acouple of years I began to have
something called you know whereyou would flare and then you
would heal.
So I went through several yearsafter that where I would have
quiet periods, my skin wouldkind of be healed up and then I
would have another flare and itwould be very itchy and my skin
would be cracked and bleedingand dry.
There were probably about thefirst five years where I never
(09:13):
even took a photo of myselfbecause it was so ghastly and so
horrible than I wish I had,because there are a lot of
people now you know again, thisis 15 years ago there are a lot
of people now that take a lot ofpictures if you're interested.
But I wanted to tell my storybecause there are a lot of
swimmers have itchy skin.
(09:34):
They have a response tosomething either with the
chlorine, with the dry winteritch with goggles around their
eyes.
But please just you know find adifferent way than topical
steroids.
Topical steroids are labeledthat they are only to be used a
very short amount of time.
Sometimes it says two weeks,sometimes it says two weeks, but
(10:07):
even two weeks.
We have people in theorganization that helps people
with this that have had topicalsteroid withdrawal for years
that only used for two weeks.
It is not the cure.
It's actually a very potentsubstance to put on your skin.
Years ago, I started anorganization called the
International Topical SteroidAwareness Network the
International Topical SteroidAwareness Network, and it was
co-founded by me and DrRappaport, and we started it in
2009 unofficially, and then webecame a nonprofit and got the
(10:30):
501c3 as a full charity.
You can check this out at ITSANI-T-S-A-N, as in International
Topical Steroid AwarenessNetwork org.
I-t-s-a-norg.
We started that in 2012.
So we've been around 12 years.
We are in 41 countries aroundthe world.
(10:52):
Our Facebook groups have tensof thousands of people going
through topical steroidwithdrawal.
It is a devastating conditionand it's totally preventable.
My friend, brie Bonos, justmade a beautiful video called
Preventable tells the wholestory of topical steroid
(11:13):
withdrawal.
But I would not wish topicalsteroid withdrawal on anyone.
It is just horrific.
My flares and healing took me13 years to be completely healed
.
I've only been completelyhealed from my skin for three
years and, you know, after awhile I started getting back
(11:35):
into taking some photos.
But you know, if you've seenphotos of me, maybe at a swim
meet, or you've seen me at aswim meet, you thought what's
going on with Kelly's skin?
Um, it just is very.
You get something calledelephant skin.
Your skin is very red, it'svery thick, it's um, very itchy
and it this condition affectsbabies, it affects the elderly,
it affects every ethnicity andit is completely preventable.
(11:59):
So I just wanted to put thatout here as a warning to
swimmers, because we are theones that have eczema.
There are many better optionsthan topical steroids and I
really, truly believe, as theco-founder of it's San, that one
day topical steroids will becompletely banned from use.
That is how awful they are, andwe've come so far in 12 years.
(12:22):
Initially, when we launched ourcharity, it was, you know, we
were considered internet quacks.
No one had ever heard of it.
The American Academy ofDermatology threw my husband and
I out of a meeting in SouthernCalifornia.
Now we are invited to theAmerican Academy of Dermatology
meetings.
The National Eczema Associationtold us that we were insane.
Now we're partnering with them.
They recognize this condition.
(12:43):
This is really truly somethingthat's real and you know as a
love the love that I have for myswimming community.
If I could just stop one personfrom using topical steroids.
If this doesn't resonate withyou or you know somebody that
has eczema, they don't even haveto need, they don't even need
to be a swimmer.
Anyone can get topical steroidwithdrawal syndrome and it is
(13:05):
just something that I reallylove everybody to avoid.
So thanks for listening andhope to see you on the pool deck
soon.
Bye-bye.
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