132: What is Topical Steroid Withdrawal? w/ Kathryn Tullos

Many steroid (topical, oral, etc.) users are not given clear guidelines for how to safely use their steroid. This can lead to a condition called Topical Steroid Withdrawal Syndrome (TSW), which can severely impact the skin and overall health. 

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My guest today, Kathryn Tullos is a Registered Nurse from Houston, Texas with a degree in Communications.

She is a wife and mom of 4 kids – ages 14, 12, 10, and 9. In mid-2013, her son suffered severely from Topical Steroid Withdrawal Syndrome (TSW) for 18 months, due to steroid creams prescribed for his eczema.

Kathryn threw herself into patient advocacy to try to help others navigate this often misunderstood iatrogenic disease. She joined the ITSAN board in 2015, helped write and relaunch the ITSAN website, and eventually became Executive Director.

She stepped down briefly in 2018, but she couldn’t stay away for long. Kathryn returned to ITSAN in October 2019 as President and CEO.

Join us as we discuss Topical Steroid Withdrawal Syndrome.

Have you experienced Topical Steroid Withdrawal Syndrome? Let me know in the comments!

In this episode:

  • What is Topical Steroid Withdrawal (TSW) Syndrome?
  • Kathryn's son's experience with TSW
  • Symptoms of TSW that totally stump doctors
  • Is TSW a recognized diagnosis?
  • Are just topical steroid creams to blame for TSW?
  • Steroid cream's impact on babies and children
  • The first step if you think you may have TSW

Quotes

“Usually people will use topical steroid creams like over the counter cortisone creams, or mid to high potency, all the way up prescribed by their doctors for anywhere from a bug bite, or a reaction to cosmetics, or eczema. So you're treating an initial condition. And what happens with topical steroid withdrawal syndrome is that you become worse.” [2:12]

“There are limits to these medications and we need to know what they are because I think everyone has potential to be affected if you use this too long, too many areas, without breaks.” [15:25]

Links

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132: What is Topical Steroid Withdrawal? w/ Kathryn Tullos FULL TRANSCRIPT

Jennifer: Hi everyone. Welcome back. Today I've got a guest with me who's going to talk with you a lot more about something called topical steroid withdrawal. As you know, when I interviewed Louise King a number of months ago, I decided at that point that I was going to make it one of my missions in the next year to cover something called topical steroid withdrawal to help not just raise awareness about the issue, but number two, to help those who are struggling with a very weird amount of symptoms that their dermatologist can't explain and don't know what's going on. And number three, to also help prevent you from actually ending up with this awful, awful situation.

Jennifer: So my guest today who's joining me is Kathryn Tullos. She is a registered nurse from Houston, Texas with a degree in communications. She's a wife and mom of four kids. In mid 2013, her son suffered severely from topical steroid withdrawal syndrome for 18 months due to steroid creams prescribed for his eczema. That's why she knows about this personally. She had thrown herself into patient advocacy. And one of the reasons why was to help other navigate this often misunderstood disease. She's joined the ITSAN board back in 2015, and now is their president and CEO. Kathy, thank you so much for joining us.

Kathryn: Thank you so much for having me.

Jennifer: Now why don't you start off by telling us what exactly topical steroid withdrawal even is?

Kathryn: Okay. So it goes by many names, first of all. And there's really no medical consensus on naming. You'll see it all the time in the literature under different names. Some will call it topical steroid withdrawal, some topical steroid addiction, some red skin syndrome, or red burning skin syndrome. But it's all essentially the same thing, which is what is known as an iatrogenic condition, which is a condition caused by a medical treatment or therapy. And so usually people will use topical steroid creams like over the counter cortisone creams, or mid to high potency, all the way up prescribed by their doctors for anywhere from a bug bite, or a reaction to cosmetics, or eczema. So you're treating an initial condition.

Kathryn: And what happens with topical steroid withdrawal syndrome is that you become worse. The rashes spread to new areas. They're more severe. You need to start using the medication on more areas and more often and for longer periods of time. So you'll have less periods of remission between treatments. And so ideally, you would like to be able to use less than two weeks with at least two weeks of a break. Honestly, usage guidelines are very vague, even on the labeling, so it's really difficult to know what the dose is. Labeling recommends on using on less than 20% of the body. How people calculate that is really difficult.

Kathryn: So most of the prescription guidelines say, “Use on affected areas as needed,” so as needed is how long. Affected areas, what if it starts spreading full body? So people aren't really warned that this could be a possibility, that this is what's happening. Many people think this is just worsening eczema and that it has nothing to do with the creams. And so for our folks, it usually dawns on them that this is different than what I initially started treating for. And for my son in particular, I remember thinking, “Now I'm treating for what happens when I don't treat.” And so I think that's where the addiction label comes from because you're treating what happens when you stop. You're not treating the eczema anymore, and so that's kind of quick and dirty.

Jennifer: Yeah. And I think it would also be helpful for people to understand aside from just the skin, okay, we've got a rash. Say you've got eczema on your face. Let's just start there as an example. And you're using topical steroids for a long period of time. Even, I think it's important to say this as well, even topical steroids that you get over the counter, like hydrocortisone, those count here too in this conversation.

Kathryn: Correct.

Jennifer: That's an important, really important point. And you're using it, let's just say for three, four months nonstop. And you stop the medication, and all of a sudden, the rash gets worse. And I believe, correct me if I'm wrong, it begins to spread to other areas of the body that it wasn't normally on.

Kathryn: Correct, that you never treated. And then the symptoms amp up too. So before with eczema, you would be severely itchy. This is a bone deep itch. It is burning, stinging. Things that never used to bother your skin bother your skin, including water. So you take a shower or a bath, and all of a sudden your skin is flushing bright red and it's burning. So it's really different from eczema in that respect. It starts shifting to something new. And then why syndrome is kind of tacked on, so we call it topical steroid withdrawal syndrome. We're kind of shifting from red skin syndrome. We're going to update that on our website soon because it explains a little more what's going on.

Kathryn: And the syndrome component is a cluster of symptoms that are in common with everyone who goes through this. That has nothing to do with the skin. And there's a lot of systemic symptoms that comes because steroids are a hormone made in the adrenal gland. Cortisol is what is made in the body. And hormones don't affect … They don't happen in a vacuum. They affect each other. So a lot of our children especially, they have HPA axis affected. So hypothalamus, thyroid, pituitary gland. For my son, he stopped growing. He went from 70th percentile on height to 15. Sorry. My phone is ringing.

Jennifer: That's okay.

Kathryn: Please excuse that. That was something that they weren't even monitoring for, even though we were using topical steroids. No one was tracking how much, how often, asking which doctors prescribed what. They knew what they prescribed, or if we're using over the counter. And so nobody knew what dose we were using. And he started to have these endocrine symptoms. And then he started to have immune symptoms. So his IGE levels went through the roof. I think normal is somewhere around 150. His was 12,700.

Jennifer: Oh, my gosh.

Kathryn: So through the roof. It made him have false positives on food allergies. He does have a legitimate tree nut allergy, but it was showing allergic to every food there is to eat, wheat, corn, rice, chicken, oranges. It's just stuff that he ate, and I knew he was okay with, so it was just affecting everything all at once. And everything went crazy just by using this medication. By stopping the medication, everything went even crazier for about 18 months time. I'd say maybe halfway through, nine months through, he turned a corner where he started having more clear skin than red because he was affected full body. This is scalp, to palms, to the bottom of his feet, he had not a clear patch on his body.

Kathryn: Constant shedding of skin flakes, couldn't regulate his temperature, his hair was falling out, he wasn't growing. It was just this whole cluster of symptoms. And as we got further away from using this medication, further into the withdrawal, his symptoms went away one by one. Oh, and I forgot to mention he got a new heart murmur. He had a thickened heart wall, which I took him to specialists for everything, a pediatric cardiologist, oncologist. He had a lymph node biopsy because all of his lymph nodes were huge. Every single one was growing in armpit and chest, and just where you shouldn't have lymph nodes, all the way up his neck, behind his head. Everything was coming back negative.

Kathryn: And he had a full workup with an immunologist. Everything looked normal. And as I said, the longer we stayed off this drug, everything resolved one by one. We had a five year followup this August with his cardiologist, and she released him from services. He had an EKG and he had echocardiogram, where they looked at the structures of his heart. Everything was back to normal, no more thickened heart, no more murmur. He was discharged from his endocrinologist because he's growing again. Now he is 60th percentile. He hasn't regained all that 70th percent, but he's coming out of that too. So to me, it's very, very obvious that the steroids that we used were the culprit for all of the syndrome symptoms that we saw.

Jennifer: I also think it's worthwhile to mention as well that the research that I've looked at does indicate that babies and children are even more affected because they're smaller than an adult. So when you're slathering, say, a baby head to toe with topical steroid creams, you have to realize that they're a much smaller individual. There's a lot of potency involved in these creams, and it does go through the skin. It is a hormone. I think that's really important to specify. You're literally slathering yourself with a synthetic version of cortisol.

Kathryn: Right.

Jennifer: And a lot of my clients as well, who are adults, I don't work with children or babies, but they also suffer with insomnia or really messed up sleep patterns, incredible amounts of fatigue, terrible brain fog. They have been checked by hematologists and endocrinologists and infectious disease doctors for all sorts of weird, uncommon, rare either diseases or disorders that may occur because they don't know what's going on. And no one is asking, “How long have you used topical steroid creams?”

Kathryn: Right. Or how much?

Jennifer: How much?

Kathryn: Yeah, taking into consideration who all has prescribed to you, or maybe you're using a sibling's prescription. Maybe you're using a parent's. Because it's the same prescription, people think, “This is my prescription. It's okay to use,” but then that's not being tracked anywhere. Right?

Jennifer: Correct.

Kathryn: And I wanted to say to your point about children, they call it body surface area to volume ratio. So it's like they have more body surface area to what's inside of it. Right? So they have more skin versus body composition under the skin, and so it absorbs a lot more. And their skin is thinner than adults, and so that absorbs a lot more, which is not to say adults aren't incredibly affected because they are. And what they have against them is 30 years of use, the cumulative use of years and years.

Jennifer: And if you're a parent, if you are applying the steroid cream to your child, you can be susceptible to this. I want to be also clear. This is not just an eczema problem. This is a problem across all of these different skin conditions, where topical steroids are the go to thing. Now I'm not saying, and I don't think you're saying either that these are evil, or bad, or they should be banned. We're not saying that. But what we want to do is say, “Hey, maybe at this point, number one, we need to give better guidelines.” Or there need to be better guidelines that doctors can recommend to their patients. Number two, we can't assume that over the counter is safe because it's over the counter. There can be negative consequences. And number three, can we build awareness so that when someone is experiencing topical steroid withdrawal, that it's actually identified?

Kathryn: Correct. We need all of those things. And what we don't know is: What is the tipping point? And why do some people get this and some don't? I have a few theories on that. First of all, we have no idea what the tipping point is and why some people appear to get this and why some don't. My theory is that everyone has a tipping point, and at some point of use, maybe some people can't tolerate as much as others because for me, when I was applying to my son, so we probably applied it about three years because it was from infancy until right before he turned four. And I never had any problems myself at all.

Kathryn: However, when we stopped using, my hands flushed bright red for at least six months. And I couldn't wear my wedding ring. I mean, it was horrible. It was just like what he had full body, but it was just on my hands because I didn't always wash my hands after I applied the creams on him. And so I had a tipping point that was much higher than his, and maybe because I only used it on my hands, I have no idea. But I think that there's a lot of studies coming out of India because people can buy high potency topical steroids over the counter, and they use them as fairness creams to lighten the skin because it is like a vasoconstrictor and it does make you look white and lighter and whatever.

Kathryn: But they're have a problem they call topical steroid damaged facies. And you can look that up in the literature. So these are people that had no skin problem. They had no eczema. They had nothing they were treating. They were using it cosmetically and they got this problem over time because of the high potency constant use. They had a tipping point. Right? And so that's kind of what I want to get out there too, that you could say we don't know who gets this, who doesn't. It could be safe for you. We don't know. But the point is there are limits to these medications and we need to know what they are because I think everyone has potential to be affected if you use this too long, too many areas, without breaks.

Jennifer: And actually, can I ask as well? Would taking oral … Say you were prescribed oral prednisone as a way to also help, so you're doing topical steroids and oral prednisone. Can the oral prednisone contribute to this? Or is it more just focused on topical steroid creams?

Kathryn: Any vehicle for steroids affects this. And we do see a lot of our members come into it just from oral, just from oral steroids for asthma, or for they got a steroid shot for their hip, or their knee, or something like that. And then all of a sudden, they're flushing bright red. And then they get prescribed topicals to treat that, and then they're into it. Right? And what a lot of our community has allergies and they have asthma and they have other things they treat, so you might have steroids in your eye drops. You might have it in your nose spray. You might have it in your inhaler. Some people have nebulizers. So it's cumulative. And then if you have asthma that's not controlled, or you have an anaphylactic reaction, you're going to get injected or oral steroids. And so it's all of this working together, a lot of overlap in our community with different types of steroids.

Jennifer: What does somebody do? Because at this point, it seems like most people are basically realizing on their own because it's not a legit medical diagnosis as of yet, at least not in the United States. What do you do if you believe that you have this condition? What's the first step?

Kathryn: I think that there is a lot in the literature about this. And so we encourage members to get pertinent studies, especially recent ones. Print them out and bring them to your doctor's visit. I know that's something that I did with my own son. And following up, I think continuing to go to the doctor helps so that they can see this. They can see it resolve start to finish and that it followed the symptoms and the timeline in literature from doctors who've reported this. Some are reporting case studies, a lot aren't. And a lot of our members, they go into the doctor, they fully want and need medical care. But they are talked down to, not validated, saying, “This is not a thing. This doesn't exist,” because the doctor hasn't heard of it and hasn't read up on it, which it is out there in the literature.

Kathryn: And so then the patient doesn't want to come back again, and they don't. And so then that doctor never sees the resolution. And I understand too, especially in our pediatric community, there's a lot of fear of having CPS called on them because they're not treating, when in fact, they are treating in earnest this condition. This is the only way to treat it is to withdrawal from topical steroids. How you treat all the other symptoms after that, that's up to you and your doctor. And there are a lot of alternatives, both Western medicine and otherwise, that can help quell the inflammation and treat infection especially and pain, anxiety, the cluster of symptoms that comes with it. If we could work together, patients really want to see doctors. And the only thing they won't do is the steroids because that's the problem. But there's so many other things, so many other ways.

Jennifer: And can I just ask because I think it's important to manage people's expectations? If you do find that you're listening to this, and you're like, “Oh, my gosh. Light bulb moment, I actually think this might be me,” realistically, is this something you can resolve in a month? What are you looking at just so someone can mentally prepare themselves for the road ahead?

Kathryn: Right. And so the word that we use in our community is protracted. It's a very long-term thing. And that's another mystery question mark. We have no idea why it takes this long to resolve, but it's measured in months to years. And I remember when I first came into the community, and someone had put up a blog about their child. Her child resolved in nine months. And I thought, “My gosh, nine months, that's so long. And I bet if I research enough and I figure this out, it'll be much shorter than that.” Come to find out, nine months is really short within our community. My son resolved in 18 months. That's also on the short end of things in our community. So especially adults who have used 20 plus, 30, 40 years some of them, you're looking at we call them long-term vets, you are from two to five years. And like I said, the symptoms will start to abate. But it's kind of like if you had a line chart. You're like, “Okay. Improvements like this, TSW's like a squiggly line.” [crosstalk 00:20:44].

Jennifer: Peaks and valleys, slowing going up.

Kathryn: Up and down. It's not linear. So you'll see great improvement and you'll think, “Oh, thank goodness this is over.” Bam, a full body flare. And then that resolves and you keep gaining ground. Over time, your flares are less often. They're less full body, less parts, more patchy. And you just kind of gain a little more of your life back. You're more comfortable in heat. Little things like that start coming back. But at any moment, out of nowhere, also mysterious, you can have a flare. I know it what drives me insane with my son is when he's clear because … And right now, he's clear 100%. And at this time last year, he had patches behind his knees that really bothered him. And I'm thinking, “We have done absolutely nothing different. We have kept his routine the same. Why are you better now?” I have no idea because if I knew, we'd do it forever.

Kathryn: But it's just kind of a mystery of how the body works through this thing. And it is possible that what I had thought was his typical eczema was remnants of topical steroid withdrawal syndrome. And now he's actually … I mean, we don't know. But to answer your question, yes, to mentally prepare, you're talking about a long-term commitment. So on our website, on itsan.org, there is a tab called coping. And it lists kind of like a survival guide and expectations, talking about you need to get child care in place. You might not be able to work. You kind of need to understand it's debilitating, especially the first several months. You may be home bound, especially depending on what interventions you avail yourself or not. Some people do immunosuppressants, and that works in the initial stages especially, and will wean off. And there's different things you can do. But yes, the expectations need to be set upfront. This is not easy or short.

Jennifer: And I think, well, at least one of the things I pride myself on is always keeping in mind what someone listening to this is going to ask next. And that's why I was like, “We need to set the expectation here that someone's not going to go, ‘Okay, next month I'm going to be all like new.'” No.

Kathryn: And I would also suggest, there's I guess you would say controversy within our community versus, surrounding cold turkey versus tapering. And I think that's something to be discussed with a doctor as well because it's possible if you use enough steroid creams, especially if you're using them oral and topical and inhaled and all this, that you could have a severely depressed adrenal gland. And so then basically when you're taking a steroid of any kind, you're telling your adrenal gland, “I got this. You don't need to make as much cortisol,” as if you had injected insulin and your pancreas is like, “Okay. Well, then I don't need to make as much.” So you're communicating that it doesn't need to make its own, so it backs off, which is why then you need to use more. And it gets in this kind of loop. Right?

Kathryn: So then if you stop using out of nowhere, it's like, bam, all of these adrenal symptoms. And we have had … It's really rare within our community, but we have had some who had adrenal crisis. Right? And so where it's almost like carrying an epi pen. You're carrying this cortisol pen, injection with you at all times in case you go through stress, your body needs a boost and it can't do it. So there's a test, I think it's called an ACTH test that endocrinologists do to check function, to make sure. And I had that test done probably two or three months after my son stopped because I was very naïve. And I wished that I had it upfront because he had a lot of adrenal symptoms that I think could've been helped by maybe a slower taper.

Kathryn: I will say what our community sees with tapering topicals, they don't really see it improve their skin. It's not like you could be let down easy skin wise. Your skin is going to start flaring the minute it gets less of this drug. My concern is that maybe for the body, it is gentler. Maybe for [inaudible 00:25:35], that is just my opinion and my theory. We don't have a whole lot of data on this.

Jennifer: Yeah. And that's why it's important to work with a doctor. You have to have a doctor team in place to help you with this because it's not something … I'll just say, I've never gone through this, but I don't think this is a go it alone type of scenario. I think you need a community. I think you need medical support. You can certainly utilize alternative practitioners as well. But I think this is, it takes a village. This is a village scenario that you need to put in place for yourself. And you need to embrace the fact that it is going to be a long road ahead.

Jennifer: Kathy, I just first of all want to thank you so much for coming. I would love to have you back sometime. I think there's a lot more that we can actually talk about. And for everyone listening, if you believe that you have this, if you have concerns or questions, head on over to the website, itsan.org. I'm going to put all of the links there on social media, so that way, not only can you utilize our information, but if you have topical steroid withdrawal syndrome and you've been helped, please donate to the organization. They're a nonprofit and they could totally use your support. That's why this community's so awesome. It's about sharing and supporting one another so that we can all get through this.

Jennifer: And again, this isn't just about eczema. This can affect people psoriasis, dandruff, all sorts of conditions where topical steroids have been prescribed for a lengthy period of time. Or you just thought, “Well, I'll get something over the counter from the drug store,” it's all cortisol unfortunately. And that's where this whole problem can play a role. So again, not to scare you guys, but to build awareness and to help those that are suffering, and to also help encourage you if you haven't gotten there, do your best not to. And I'll also put Dr. Peter Leo, one of our favorite guests, he talked about appropriate steroid usage. I'll also put a link to that in the show notes if you missed that episode. That way, you can go and also take a listen to his opinion about what would be a safer, more appropriate way if you do have questions about that. And then you can talk to your doctor about it. But Kathy, I just want to thank you so much for coming on the show. And I look forward to our next conversation.

Kathryn: Thank you. I would love that. I really enjoyed our time together. And I really appreciate what you do for all of your listeners. It's amazing and it's awesome. Thank you.

“Usually people will use topical steroid creams like over the counter cortisone creams, or mid to high potency, all the way up prescribed by their doctors for anywhere from a bug bite, or a reaction to cosmetics, or eczema. So you're treating an initial condition. And what happens with topical steroid withdrawal syndrome is that you become worse.”