096: Topical Steroid Withdrawal (A Personal Story) w/ Louise King

The conventional treatment for skin rash issues like eczema is topical steroid creams. Trying to go off the creams after a long period of time can lead to a little known condition called topical steroid withdrawal (TSW). 

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My guest today is Louise King, a 28 year-old from the U.K. who is going through Topical Steroid Withdrawal and using all her spare time to raise awareness on the unrecognized illness

Join us as we discuss topical steroid withdrawal, and how Louise is trying to heal from it.

Have you suffered from topical steroid withdrawal? Let me know in the comments!

In this episode:

• Louise's story with eczema and topical steroids
• What is topical steroid withdrawal?
• Did a doctor ever caution Louise about the use of topical steroids?
• What to do if you have TSW
• How an topical steroids affect you internally?

Quotes

“Topical steroid withdrawal is kind of like a drug withdrawal that you have to go through once you realize that you've got a topical steroid addiction.” [3:25]

“I think if I had known of the consequences of that or the potential side effects of steroid creams, or really what they do to the body is way more terrifying than I ever imagined. I mean, they go straight to the bloodstream and kind of affect internal organs, which is where I'm at.” [7:24]

Links

Find Louise on Instagram

The Eczema Life post about TSW

ITSAN.org

Video Interview

096: Topical Steroid Withdrawal (A Personal Story) w/ Louise King FULL TRANSCRIPT

Jennifer: Hi, everyone. Welcome back. Today I am joined by actually another person whom I found on Instagram whose story has… It has humbled me because of the things that she's gone through. I've been searching for someone to talk about topical steroid withdrawal for a long time, like over a year at this point. And yes, I feel blessed that I finally found someone and I feel like the right person to share their story about this, but I'm also sad that this is something that happens and that we even have to tell this story. I think that's an important part of this process, that we all understand that there's a difference, and it's not to demonize or make you afraid of topical steroids. They may certainly be a part of your journey. They were for me, but we need to use them responsibly, and oftentimes it's not fully explained how to do so. So my guest today is Louise King. She's actually from the U.K., so she's joining us from there.

Louise: Hello.

Jennifer: Louise, why don't you start off with telling us a little bit about when did this all start for you with eczema and I guess the topical steroids?

Louise: Sure. I've had eczema for a long time, so since… I think my mom noticed maybe when I was about three, four and then five years old was when I started using topical steroids, and kind of just carried on using them through and through. I mean, the doctors never really looked at the real cause of my eczema. It was just use these topical steroids, and as the years went on into my 20s I was on quite a high potency and things weren't looking good, really. My skin was completely rashy, red and rashy and if I would tan, I would have white patches. At the age 21… I'm 28 now. Age 21 I did some allergy testing and realized I was really allergic to cats. We'd had a cat since I was five or six-years-old, so I think my eczema was just a contact allergy to the cat, and the whole time the doctors have been prescribing steroids.

Louise: If someone had just done an allergy test back then and realized, then I think things would have been a lot different. So kind of skip forward to 28, tail end of last year I did some researching and I thought, you know what, these creams aren't working for me anymore. I've got big patches of eczema, or so I thought it was eczema, kind of above my top lip, my hands. My back was covered for about four years, and I just thought I'm going to treat this naturally, I've had enough. So I actually found someone online using the hashtag “topical steroid withdrawal.” And I thought, “What is that?” I mean, I've never heard of that. I've used topical steroids, and then that kind of just blew my mind from there, so it really was Instagram that kind of opened my eyes to what this is, which is crazy.

Jennifer: Why don't you tell us what topical steroid withdrawal is for somebody like you? It's like, wait, what is that?

Louise: Sure, so topical steroid withdrawal is something… It's kind of like a drug withdrawal that you have to go through once you realize that you've got a topical steroid addiction. Addiction to topical steroids is where… So for me, I had to use them kind of religiously, and if I didn't I would come out in a full-blown rash and red and hot skin. So it's that withdrawal period coming off of the creams and it's brutal and it really is one of the worst illnesses looks-wise that I've seen. I mean, it's terrible.

Jennifer: And for someone who's listening to this, going, “Well, that's what my eczema looks like right now,” we were both noting before we even started this, that there is some confusion that some people may actually have… You know, it's also called like red burning skin syndrome. There's a lot of different names for it, but your eczema may have morphed into this state of things and you're still trying to treat eczema when in reality it's actually an addiction to the topical steroids.

Louise: Yeah, absolutely. I think everyone's different as well. So my eczema… because I still get eczema now. My eczema kind of seems to stay in the creases of my elbows, back of my knees, a little bit on my face, but the red skin syndrome or the addiction to topical steroids was kind of like a red rash and it didn't really flake. It just kind of appeared everywhere, and I wouldn't be able to tan over the top of it. So it was kind of a different eczema in a way. It was just kind of permanent rashes that would never leave.

Louise: I see a lot of pictures and I noticed that it's not eczema, especially I'm in one of the DUPIXENT forums online, and a lot of them, I think as they start to use DUPIXENT, they come away from topical steroids. And so their body's going through withdrawal and they don't realize and they say, “Well, I'm on this drug and I'm not getting any better,” and I'm thinking, yeah, how many more people do I have to tell that they have this terrible thing? It's awful, and why is it up to us to tell people? I mean, it's good that we have to, but we need more medical support because people are lost.

Jennifer: Did a doctor ever tell you or caution you about how to use topical steroids?

Louise: I've had a lot of different guidelines, so one of them told me to mix it in with my moisturizer, which is a little bit scary, so daily moisturizer, just mix it in, so that meant probably my whole body was covered. Someone said to put moisturizer on first and then put steroid creams on, sometimes the other way around. Some people would say try not to use it on my face, and then I would get prescribed… I think I was prescribed a medium potency for my face, but then I hear of people that were told to never use it on their face. And I think, “Oh, I would just wish I'd heard that from someone.”

Jennifer: Yeah, so it sounds like there's no clearcut guidelines across the board that is being transmitted to patients. This is probably part of the problem.

Louise: I think so. I do know that the guidelines have changed recently in the U.K. They say just use it for one week only. But my only problem with that is, is that they say use it for one week, but they give you a tube which is massive, and your eczema isn't going to be cured in a week, so it's a bandaid for a week. Then the next week your eczema comes back and you've still got this big tube and you think, “Okay, well, I'll just use it again.” I think if I had known of the consequences of that or the potential side effects of steroid creams, or really what they do to the body is way more terrifying than I ever imagined. I mean, they go straight to the bloodstream and kind of affect internal organs, which is where I'm at.

Jennifer: The thing that I had read on your Instagram account was that you were basically having trouble even going to work, like you were really… It was getting really depressing having to deal with this because of the way your skin was just so not… You know, the way that we want it to be. We want all of our skin to be normal, but when you're not able to do that and there's nothing you can do and it feels so out of your control, people stare, people make comments. I would imagine, too, there's a lot of pain that can go along with this and discomfort. What made you realize that you needed to take a step back and make a change? Because obviously there are people who go, “My goodness, I'm just going to go live in a cave and I don't want to see anybody. I don't want to do it. I'm just going to be in my depressed really upset state,” but yet you've chosen to be very public about sharing your journey and sharing photos that a lot of people would prefer people not see.

Louise: Yeah, I don't know, actually. I haven't been asked that question yet. My friends think I'm a bit mad, and I said to them last night, “I feel so lazy,” and one of them said, “How could you go through something like that and still have such presence and call yourself lazy?” And I thought, actually, what was I doing? I mean maybe… I mean, especially doing the TV show when I was so poorly. I think because I was compassionate about no one having to go through this, that I had, and I think because I was so unaware of what these creams could do. I just thought it was just a cream. And then my goddaughter got prescribed them and she's 11-months-old. I don't know, I just kind of thought something needs to change. Something needs to change. We might not be able to save the people that have to go through it and that breaks my heart, but we can prevent it happening in the future, hopefully.

Jennifer: Well, so why don't we talk a little bit about what happens if you do have this? What should someone expect? How long did it take you? And I know you're sort of… Would you say you're still in the midst of things?

Louise: Well, I actually have gone on immunosuppressants, so when you have topical steroid withdrawal, there's a few kind of routes that you can go. And because I was so poorly and unable to work and just a complete mess, I thought I'm going to get some help. We talked earlier about not being scared of medicine, and I'm not, but a lot of people are burnt by that. So what to do if you realize that you've got it. I think I normally say for people to go onto itsan.org. ITSAN is the American charity looking after people with potential steroid addictions. They've got huge list of symptoms, so you can kind of symptom check from that, because it can look like eczema and we have to be careful that we're not leaving someone with untreated eczema. And then I think I just did a load of research. Just get yourself on Instagram. Look at pictures, compare your skin to other people's skin. Get in touch with people, get in touch with me. I might regret that. But speak to people about it and ask questions and get on YouTube.

Louise: Dr. Rapaport is quite well known for being a really good influencer, and he's doing a lot of research and training all of the students around him, like his daughter, on this, and I think he's hoping that the next generation of doctors will know about this and things will be different.

Louise: And then I think get yourself on the Facebook groups. Yeah, so I think topical steroid withdrawal can kind of last between six months to five years, and I hate saying that. So when I first started I thought, “Ah, mine will be over in three months and it will be fine.” And people would say to me, “No, actually, it can be with you a lot longer,” and that's scary, I think.

Louise: But for most people, I would say six months to 18 months is kind of the normal average period, and you just have to prepare yourself. It's a hard decision to make and there's a few different ways to do it, to go through the withdrawal, I would say personally try to get to six months naturally. Naturally going through the withdrawal is best. There's no other… It's just the best way to do it. And there's a few different ways naturally to kind of influence that, so a lot of people do moisturizer withdrawal or non-moisture treatment and those kinds of Japanese treatments that are quite good, and yeah, it's difficult.

Jennifer: Oh, I will tell you this much. I think it's better to be honest and have someone mentally prepared for the road ahead rather than to lie to them or give them these like shiny object syndrome, like, “Oh if you just get to a month you'll be fine. You just do this one little thing, you're going to be better,” and that's not really fair. You and I both know it's a long road with… You especially know. You've had eczema a lot longer than I had it, and you know, people are surprised.

Jennifer: Like even for myself, it took a year when I was just dealing with eczema. I never had topical steroid withdrawal. But that was a year. That was a year journey of working on things, and I think if you help someone manage their expectation of what's ahead, they can keep their head on in the right… Everything in the right order, like, yeah, okay, I know what I need to do head down. I've just got to keep going. I ask for help when I need it. If you were to look back now and tell yourself or tell your mom years ago or just somebody, some words of advice, is there anything that you wish that you could say looking backwards, having been on this journey?

Louise: You need the right support, so if you're going to decide to go through this withdrawal, you need to make sure you've got the right support. I always feel for mums with young kids when they say they're going through it, and I just think how… Because you just have to expect your life to completely change. After, it's a good change, but during it's just complete hell. I think I would say to someone follow those guidelines of using steroid creams. I'll be honest with you, I didn't, and I had no idea. Like I said, I would have a rash come up. I would just think, “Oh, I'll just use my creams, they're there,” without realizing that how important that was.

Louise: Oh, I don't know, support, and I think just it's your body, at the end of the day. Things will happen to your body that you have no control over whatsoever. But there's a lot of… I don't know if it's just online, but there's a lot of kind of victim blaming and you need to eat this diet and you need to do that and you need to moisturize and don't moisturize. There's a lot of conflicting information, and just go with your gut and just go with what you feel is right, because you know your body better than anyone else.

Jennifer: I agree with you. Yeah, I want to give you like a high five for that. I think one other point that might be helpful for people to hear, you had mentioned earlier that the steroids can affect the organs internally, and that might surprise some people because they think, “Oh, it's just on the skin,” except our skin is a very absorbative organ. What are some things that they should… If that's a little alarming or shocking to someone, what's been your experience with that? How has, if you don't mind sharing a little bit, what type of organs or what areas has it affected more so than skin?

Louise: Sure. There's a lot of heavy metals in steroid creams, so for a start you're filling your bloodstream with heavy metals, which we know is not good. But apart from that, steroid creams are made of a synthetic hormone, which is cortisol. Cortisol is a stress hormone, and that's created in the adrenal glands, and so when you're putting it on your body all the time, it goes straight into the bloodstream and your adrenal gland gets lazy and stops producing it. So from my experience, when I… This was the only way my body was getting cortisol, and kind of strange things happening. I remember being off work with stress last year, and I just got so stressed and I would get so red-faced and I could just couldn't control my anxiety. And I haven't had any of that since I gave up the steroid creams, even going through what I've been through. It's bizarre.

Louise: So when you do give up the steroid creams and your body is addicted to them, your adrenal gland goes into fatigue. What that can look like is a really bad insomnia. I think the adrenal gland creates the hormones, the sleepy hormones, so really bad insomnia, and your skin… So cortisol is used in the body for skin repair as well and kind of keeping your skin nice and healthy, and so your body just doesn't have that. So your skin is completely damaged and thinned by the steroid creams, and then there's nothing internally repair that, so it all becomes a bit of a mess, really.

Jennifer: Yeah, and actually I want to share too, there actually is research, surprising research, to support that, and that not just does that cortisone in the cream affect your adrenal glands, but unfortunately research has shown that the younger you are, the greater the impact. So for the mom's listening, again it's not… We're not trying to scare anyone, but you should be aware that it has a really big impact on your little one's adrenal glands. I'll link some research under this, so that way you're able to see it as well. When I found that, it was quite shocking to me, and it's not unlike complementary or alternative medicine journals, this is legit research that I feel like people are ignoring, like we want to just solve the problem immediately but not realizing the longterm impact that it can have.

Jennifer: And then we have to live with it. That's the unfortunate part. So I know that your journey isn't going to look like everyone else's, and I know that your a big thing is raising awareness. Obviously, we can send people to itsan.org, and I'll put a link to that beneath this. Is there any other resources that you've become aware of that someone might, aside from just going online and looking, anything more official? Even if it's in the U.K., because I know that's where you are, but we can still access that here in the U.S.

Louise: There's a bunch of studies done on topical steroid addiction and withdrawal back to… And I think Dr. Rapaport's was 1979.

Jennifer: Yeah, a long time ago.

Louise: Yeah, and I think, “Oh, man.” I think there's a really nice page on Eczema Life, which is Karen Fischer's website. It has this debate about topical steroid withdrawal, and she lists all of these studies and it's amazing. So if you're into that kind of thing like me and you want to just read and read and read and read, so get yourself on that. I can give you the link.

Jennifer: Oh, it's okay. We will get it. We will put it beneath this for everybody. Well, I just want to thank you so much for joining us. It means a lot that you are here telling your story so that people can understand how this impacts… You know, I think it's great when we have a doctor, but it's also equally important to hear someone who's really living it and going through it. And your choices to get better are your choices. That's one thing that I talk a lot about, is that we all have to make our own decisions of what our way forward, it's very unique. What might work for me may not be the right way for someone else, and that's okay. It's not our jobs to start throwing stones and judging everybody for their choices. We just have to do-

Louise: It's good for you and good for me too, isn't it?

Jennifer: Yeah, exactly. And it's important that we don't judge other people, because our bodies are unique. Our health values are unique, and we're all on our own journey and that's just it.

Louise: Yeah. I think people have different breaking points as well. We have to be aware of that mentally, different kind of strengths and weaknesses, and mental health, you can't forget about that.

Jennifer: Yes. Yes, yes, yes. Well, I just want to thank you so much for joining us.

Louise: Thank you.

Jennifer: And I'll make sure that people know where to connect with you. Instagram seems to be the main way, and if somebody is listening, what is your Instagram handle so they can go and connect?

Louise: It's Louigi.skin, so L-O-U-I-G-I, and dot skin.

Jennifer: Perfect. Awesome. Well, thank you so much for joining us.

Louise: Thank you.