156: Recovering From Topical Steroid Withdrawal w/ Briana Banos

If you've been following the show for a while, you've heard me talk about Topical Steroid Withdrawal (TSW). I find it fascinating, which is why I was so thrilled to talk to today's guest, Briana Banos. Briana released an incredible documentary about TSW to raise awareness about this little-known condition.

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My guest today, Briana Banos is the creator of Preventable, a documentary highlighting the consequences of overprescribing topical steroids, as well as showcasing the detrimental effects this can leave in a patient's life.

She was a former professional dancer and aerialist for Royal Caribbean, and now teaches dance and theater at a charter school in her hometown. Briana is an avid believer in speaking up for yourself and being your biggest advocate.

Join us as we talk all about Topical Steroid Withdrawal (TSW), and why taking care when using topical steroid creams is so important.

Are you recovering from TSW? Let me know in the comments!

In this episode:

• Why did Briana create the documentary “Preventable”?
• Why did she need steroids in the first place?
• How did Briana realize that steroids were causing her problems?
• Briana's tips for those struggling with the mental and emotional side of skin rashes

Quotes

“For me to spread awareness is the only way I can help someone not go through the frustration and the pain and the loss that I, and so many other people, have and are going through.” [18:38]

“I feel the only way to keep yourself from crying is to find the light in it.” [20:25] 

Links

Find Briana online here and here

“Preventable” documentary GoFundMe

“Preventable: Protecting Our Largest Organ” documentary

ITSAN

Healthy Skin Show ep. 104: Topical B12 For Skin Rashes w/ Dr. Peter Lio

Follow Briana on Instagram | Instagram | YouTube

156: Recovering From Topical Steroid Withdrawal w/ Briana Banos FULL TRANSCRIPT

Jennifer: Hi, everyone. Welcome back. Today, my guest is someone I've been really looking forward to speaking to. In fact, she can attest to it. I stalked her. I was asking around. I was trying to get people to connect me. We emailed her multiple times. I was literally on this hunt because a client of mine, who believed that she had something called TSW … You guys have heard me talk about this. So, it's topical steroid withdrawal. Had come across this documentary on YouTube. It just opened her eyes, because she could not, and no one could explain to her, why she had this myriad of symptoms.

Jennifer: It was just being blamed, initially, on eczema, and then her doctors were looking at all of these random, weird, rare diseases, because they couldn't figure out what was going on with her. This entire time, everything came down to TSW. So, the documentary changed everything for her. So, I found the creator of the documentary. She's here today. Her name's Briana Banos. Preventable is a documentary that highlights the consequences of overprescribing topical steroids, as well as showcasing the detrimental effects this can leave in a patient's life.

Jennifer: Briana was a former professional dancer and aerialist for Royal Caribbean and now teaches dance and theater at a charter school in her hometown. She is an avid believer in speaking up for yourself and being your biggest advocate. So, I just want to say, first of all, thank you for being here. Thank you for everything that you did to create this amazing documentary.

Briana: Oh, it's so exciting. I'm happy to be here.

Jennifer: So, for those who have not seen the documentary and don't understand even why you did it, what was the reason behind why you created Preventable?

Briana: Well, as many can probably attest, when you go into a doctor's office and you have these crazy symptoms, and you tell them, “I think it's because of topical steroids,” they look at you like you're a crazy person. You don't feel heard. You don't feel backed up. You don't have any support. That was what was happening to our community, and it's probably happening to a lot of other communities. For ours specifically, I know so many people felt alienated. So many people felt like they couldn't go to any doctor and feel like they could get any sort of answers, because they were going to be called crazy.

Briana: They're going to be pushed out or laughed out of the room simply because they felt that the steroids were doing this to their body, and a doctor's telling them, “No. That could never happen.” So, I know when I got sick, everything fell apart. I lost my job because I couldn't dance anymore. I also did aerial performing. I had just gotten my personal trainer certification. That went out the window. Couldn't be a personal trainer. I was always someone who was very active. So, sitting on the couch was very depressing.

Briana: It was about month four into it, I started losing my hair. I ended up making a video of me shaving my head. Anyone in my life knows I had very, very long hair. It was like an appendage, and it was like a part of me. It was the last feminine thing I had, and it was gone. I was so sick of thinking that I was going to sit there and let that happen to me. So, then I started making YouTube videos and little things to help people laugh, because if you're not laughing, you're crying, in that state. I wanted to spread a little more humor and light on this subject.

Briana: Then I started talking with people from ITSAN, the International Topical Steroid Addiction Network. Working with them, alongside them, they took me to a conference with them in September of 2016? '15? Oh my gosh. It was such a long time ago now. I just started seeing the advocacy and the passion behind people really wanting to make a change, and after a while, just felt like I could do more. I just remember thinking, “Why not make a documentary?” I will tell you, I bit off way more than I thought I could chew.

Briana: I created a website, I created an LLC, as a business, because I didn't want people thinking I'm taking your money that you're donating to me and putting it into my personal pocket. I just really wanted to create something that brought all of our stories together, because our voice in each doctor's office wasn't enough. I just wanted to bring them all together to show people you're not alone. This is not just a one off thing. I circumnavigated the globe to show this is everywhere. This is not just a one off case.

Jennifer: Exactly. With your story, I want to just be clear, and I always like to remind people of this. This is not specific to eczema, by the way. So, topical steroid withdrawal can happen to … You can have psoriasis.

Jennifer: You can not even have eczema. You could be a mom that is slathering their child with steroid creams, and you end up getting it. So, this can impact pretty much anybody, and we're exposed to a lot more steroids than we even realize, because it's not just steroid creams. It can be through inhalers, through nose sprays, all sorts of stuff. So, for you, what was the reason that you needed steroids to begin with?

Briana: So, growing up, I had eczema, but it was very manageable. Even my mother, I would ask her, “Did I use steroids when I was younger?” She's not even sure. She's like, “Oh, we would go to the dermatologist, but they'd give you an oil here, or they'd recommend this there.” I was always manageable. Of course, looking back, I'm thinking me, looking in the mirror, went, “Oh my God! My eczema's so bad!” I had nothing.

Briana: What happened was when I first joined the cruise ship industry, you, as a performer, live onboard. A lot of our clothes, they don't get washed right away. I was the costumer. You could only do a section after a show. So, all these really sweaty costumes are smashed together. I'm pretty sure, along with the circulated air that happens when you're living below deck, I caught, what I think, is probably a fungus. Because all of my skin started going crazy. It was the worst I had ever seen my skin.

Briana: We went into a dry dock, which is when our ship is having maintenance. During that week, it happened to be in Miami. I'm from Homestead. So, I'm really close to Miami, Florida. I went and saw a dermatologist, and she just looked at me so reassuringly, and she was like, “I know exactly what you need.” I felt like, “Oh my gosh!” Relief. She threw the kitchen sink at me. She not only gave me topical steroid, I was on an antibiotic. I was on an antifungal. I was on two different kinds of antihistamines, and I was on Protopic, which is another immunosuppressant drug that they use as an ointment.

Briana: That's when the whole adventure began with the use of all these steroids. Because once I got off of it, my skin was never the same again, and then it would blow up once I went back on the cruise ships. So, I'd put it back on. Then I was on it, I think, the longest stint was six months, using it every day, all this stuff. I got married in 2014. My mom was like, “Maybe after the wedding, you should go off all this stuff. Give your body a break.” I started to realize I couldn't. Any time I would stop using the steroid, my body would just start blooming with … My wrists, and my stomach, and my back would be on fire, and it would just spread. Then my eyes started swelling. It was crazy. We didn't know what was going on. We thought maybe it was an allergy or something. Lo and behold, it was just being stuck on the steroid.

Jennifer: I think one important point you make is that the steroids can do a lot. They can do a lot to help people, in certain instances, but I think long term, and the way that we're also advised to use them, I know I've had Dr. Peter Lio, whom you've interviewed, on the show to talk about how he recommends people use topical steroids in his practice, to just help people have a little bit of guideline here.

Briana: Yeah.

Jennifer: I think, a lot of times, you're not given clear direction. Most people think that, “Oh, well, you must have used this for a really long time. It must have been a prescribed, high potency steroid cream. I'm just using over the counter. I'll be fine!” What would you say to somebody who said that?

Briana: So, for me, I have a lot of people that come to me, especially because I know people that have kids and everything, and they get really anxious when it comes to steroids. Honestly, I think some people should be, because a lot of doctors aren't necessarily telling you how to use it, what they're giving you, what type they're giving you. I think it needs to be made clear that there are cases of people that were just using over the counter hydrocortisone that you can find at a store.

Briana: When I first started going through this, one of the girls that I used to talk to regularly … Thank goodness for Facebook and stuff, where you can interact with other people. She had just used over the counter, and she was just as bad as I was. Especially with little kids. Their skin is so brand new. When you have a three or four-month-old that starts to get eczema, and a doctor tells you to put on a steroid, their body is going to soak that up. It could be a week of use, and they could go down the rabbit hole with that.

Briana: When it comes to being prescribed the super potent, which a lot of research will try and tell you, “Oh, it's just the super potent ones that you should be careful about.” I was on a classic steroid. So, that means there's class seven through class one. Class one is the most potent. So, I was in a bottom tier topical steroid, and this all happened to me. So, I think people aren't aware of even what their using. It just needs to be made clear a topical steroid, in general, used the incorrect way, this can happen.

Jennifer: Mm-hmm (affirmative).

Briana: I don't say that to scare people, but I feel like we have, especially in this age of trusting whatever a doctor says, or feeling invincible … “Oh, that's a one off story. That's crazy. [inaudible 00:11:31] that happened to you. I'm going to go continue slathering myself in this, because it's not going to happen to me.” You don't know that. I think that's what a lot of doctors, I feel, are hard pressed to not advocate.

Briana: So, they'll sit there, and, say someone has very severe eczema, even though they've been on topical steroids for their entire life, and I could sit there with them and say, “Okay. If that's what you think, but you can't negate that it can possibly be the steroid that's doing this to them. Not they just have really bad eczema. This could be inducing the extremely bad eczema that they have.” There's not really much, I feel, they can go off of to say, “No. It's not that.”

Jennifer: Yeah. I understand where you're coming from. One thing that really shocked me when I was looking at research, gosh, probably a year and a half ago, of how topical steroids impact your health. Many of you know this who are listening, that when I had eczema, my dad gave me a steroid cream. My dad was a doctor. He flat out told me, “Use this as little and as sparingly as possible. Do not use it every single day.” I didn't get the reason why. He just was like, “Just trust me. Just don't.”

Jennifer: So, I got a warning that most people don't ever get. I feel incredibly grateful for that. The problem is that topical steroids are essentially cortisol, which is the hormone that your adrenal gland produces. So, by applying that constantly, it then tells this one piece of your endocrine system, “You don't really need to do your job.”

Briana: Yeah.

Jennifer: So, it hijacks that. So, for children, there's actual data showing how much more susceptible they are because they are smaller. Their bodies are younger. We absorb this stuff through our skin. Again, I agree here. This is not meant to scare anyone, but this is here to educate you. If you have thought that this can never happen to you, or you don't use a high potency, or even a mid potency, you're just using stuff at the store, that this is not you, it could be you.

Jennifer: So, here's my question to you. You said everything started to almost bloom and go crazy, and your eyes blew up and everything. At what point did you realize the real light bulb went off? “Oh my gosh. This is the steroid cream. What the heck am I going to do?”

Briana: Well, when I was trying to look for an answer, I turned to Google.

Jennifer: Okay.

Briana: I think that's another thing that they tried to negate.

Jennifer: Dissuade you.

Briana: Yeah.

Jennifer: Dissuade you. Yeah.

Briana: “Look on Google? Crazy stuff's on Google.” But I found a few girls, which I was grateful, I got to interview for Preventable. I saw their YouTube videos, and I was like, “Wow! I look like them!” They pointed me in the direction of ITSAN. Then I started seeing the list of the symptoms that you can get, your eczema going to places that it never was before, your eczema burns, it starts to spread. I had the really puffy eyes. I was extremely itchy.

Briana: I noticed that if I wasn't using the steroid, that's when it would get worse. Because the steroid will mask it. Okay? The more you put it on, the better your skin would get. There are some people that are far worse than that, where they're using so much, and it's still not helping, and then their doctor has to put them on an oral steroid, which is what they tried to do with me. As soon as I got on a Z Pack, a tapering, by day three, I was like, “Oh, I feel so much better.” Then the day, two days, after tapering down, I was back at it, spreading, going everywhere.

Briana: That's when I knew that this has to be the steroid. I'm giving it a go. I went and had an allergy test done. I'm allergic to cats. That was it. So, that's when I knew that this has to be a steroid. My heart beats were really, really fast. I was having low blood pressure. I then had my adrenals and everything checked. Things were through the roof, and things were lower than they were supposed to be. My estrogen levels were off. It's just everybody has a different journey. Some people might start even later.

Briana: I know [Joey 00:16:30], one of our older ITSAN board members, who still helps out. She's not on the board anymore. She was six months into not using steroids, was when things started going crazy for her. So, everybody has a different journey, but I just know that going online and seeing other women that looked just like me helped me find that answer.

Jennifer: How long when you finally realized this? So, now we're here. You have this realization. How long did it take you? Do you consider yourself better? What does a journey look like for somebody?

Briana: Yeah.

Jennifer: I know that the timeline differs. Some people could be a few months, some people take years to get better. I'm going to put that in air quotes for people listening to this.

Briana: Honestly, no. I don't consider myself better. I'm actually just slowly coming out of another flare that I had. I'm still, to this day, trying to figure out what is causing my flares. I still have not touched a steroid. It is difficult. I'm much better than I was in the beginning, for sure, for sure. That was just misery. I can function now. I work at a school. I still have my trouble areas, which is strange. One of them is my hands, and I never had eczema on my hands.

Briana: So, to me, when people are like, “Oh, but aren't you way past that stage now,” I'm like, “I've never had eczema on my hands. Why am I still fighting this? I don't think this is normal eczema. I never had this before.” So, I still consider myself going through the withdrawal process. I'm five years into this, which when people are like, “Wow, that's crazy,” and it is crazy. It really is crazy. That's why I don't have answers to everything, and neither do doctors. So, for me to spread awareness is the only way I can help someone not go through the frustration and the pain and the loss that I, and so many other people, have and are going through. It's a different journey, like you said, for everyone. My journey, I still know is not over.

Jennifer: So, obviously, I mean, it's a big life wrecker.

Briana: Yeah.

Jennifer: I mean, I don't know how else to put it. I mean, let's be honest. That's what it is. You can end up not able to work. You can lose relationships. I have clients currently that are really, really struggling, even just with the emotional and mental impacts of this.

Briana: Oh, yeah.

Jennifer: Do you have any tips or strategies or anything that you can share with someone who might be in the midst of this, really depressed, really upset, feeling like their entire life is crashing around them? Obviously, you said you're not better, but you might have some wisdom, looking back, that you're like, “If I had known this, this might have made me feel a little better in that moment,” or something that they could maybe do that you learned along the way that was helpful?

Briana: I think what helped me the most, because I was in that boat … I lost my job. I lost my health. I lost my hair. I lost my husband. My marriage was no longer. I think what helped me personally was, one, finding the laughter in it. Because you're in so much pain. Honestly, I feel the only way to keep yourself from crying is to find the light in it. That's what brought me to wanting to advocate. Because I think sitting there and dwelling on the negative is only going to give you more negative.

Briana: So, I can sit here, and I can tell you right now, I'm in pain right now. My arms are bothering me. At the end of the day, I don't want to be another reason why my life is crumbling, because of my mindset about it. So, I was always one to try and look at the things that I did have and the things that I could do. I never thought I'd be a teacher, but I'm doing what I can for myself, and I'm trying to make the best of that.

Briana: I lost my marriage. Did I ever want to be divorced? No. I did not. But, to me, that gave me another opportunity to focus on myself and find out what other things I could be doing in my life. It's still a struggle. I try and find the grace in the struggle and of helping other people, of connecting with other people. I don't want to give myself or anyone a pity party, because I feel like that just sits you on a floor, instead of I wanted to look up that ladder and start climbing back up.

Briana: I'll never forget, I was living with my mother, was living in the guest house, and I tried to do a ballet bar for the first time in a long time. I was bandaged. I had bandages. I was trying to do a grand plié, which is basically ballet for a deep squat, I guess would be a simple term. I struggled getting back up. This is from someone who was an acrobat. I could do all these things. My muscles were so atrophied that I struggled doing that. I remember making a post. “Wow. Bri is at zero right now.” But I found this quote that said, “If all you can do is crawl, crawl.”

Briana: So, now I'm back to teaching. I can't perform still, but I just had a blast with my kids a couple weeks ago. We pulled out some mats, and I had a little girl that could do an aerial, which is a cartwheel with no hands. I was like, “Miss B used to know how to do that.” They're like, “Try! Try!” I ran, and I did it, and I shocked myself. Thank goodness my friend was filming me. I turned around and just screamed. I was just like, “Oh my gosh! I just did this!”

Briana: So, it's just the baby steps of, yes, you're in a really, really bad way. Yes, the emotional component actually starts to feel heavier than the physical after a while. But it's just always reminding yourself you're worth it. No matter what you look like, or how you're feeling, you've just got to keep pushing and finding the things that give you the purpose of getting out of bed in the morning. If you don't have that, you're not going to want to get out of the bed.

Briana: So, doing the documentary, in and of itself, I was so tired. I was so run down, but it gave me a reason to get out of bed in the morning, to fight for myself. So, I just want people to feel, even though they might feel lonely, that they can advocate, that they can speak up for themselves, even when it's hard. I was stuck in an allergist's office a little while ago, trying to get another test done. The doctor rolled her eyes at me when I mentioned that I … She asked me if I had any known allergies so far, and I said, “Well, I can't use steroids.”

Briana: She rolled her eyes at me and said, “Oh, I don't even want to get into that.” I sat back and almost didn't say anything, and just let her talk over me. Even though I was shaking and I had tears in my eyes, I was like, “No.” I was like, “Stop. This is how you talk to people? This is how you talk to a patient?” I was like, “I'm sitting here right now, and I circumnavigated this globe. I have a documentary out on YouTube right now. Probably know more about steroids than you do.” I was like, “So, the way you're talking to me, I just want to walk out of this room right now and not listen to anything you say, because you're not listening to anything I'm saying.”

Briana: I remember the shock on her face. I was like, “You know you just rolled your eyes at me? Is this what you do with your patients? Is this how you treat a patient? Because I don't feel very supported right now.” She was just shocked that I said that, but it felt so good to say. Then when I was laying there, she walked out of the room for a little bit, came back, and she sat down next to me and she goes, “So, I did find …” My documentary, she did see things online about this. She was like, “Okay. I'll listen to what you have to say.”

Briana: No patient should ever have to do that, but that's the boat that we're in. Good for you. Even if you cry in front of them, they deserve that. They deserve to see the pain and frustration that you're in simply because a lot of doctors don't want to listen. We have to make them listen at some point and somehow. Right now, the only way is by using our voices. So, I just know you might hit a really low point, but just keep fighting. Hold onto things that you love, even if you can't do them, find new hobbies, find things that will keep you going, because, trust me, your life is so worth living. Cutting it off does nothing. So, that was my biggest thing of finding the laughter in it and finding the purpose of getting out of bed in the morning.

Jennifer: That's a big deal. We have to find purpose every single day. I've oftentimes said, in moments when I just felt my worst, and I cannot … I'm not even going to compare my worst to your worst because I don't … We all go through our own points. I always said to myself, “If I can't laugh at something, I think I have nothing at this point. I have to be able to find something, at least at myself or in my situation, I have to be able to laugh about. Otherwise, I don't know what I'm going to do.”

Jennifer: I want to make sure that people know how to reach you. We'll put all of this, by the way, in the show notes, but I would highly encourage you, whether you think you have topical steroid withdrawal, or you're using topical steroids now, to watch Preventable: Protecting Our Largest Organ, it's available for free on YouTube. So, there's no reason why you can't go and watch it. In fact, I think it'd be something that is worthwhile, especially if you have a local support group or something. It'd be great to be able to show that, as well.

Jennifer: We need to build awareness about this to help prevent other people, A, from getting into this situation, and, B, from getting lost in the medical system, of just being told that you have all these crazy, weird conditions, or it's all in your head and you're overreacting. Because I hate to say it. It is real. This is a very real situation. Fortunately, I feel very lucky to have had Dr. Peter Lio on the show a number of times, who is a believer in this. There's other physicians that have been on the show who also believe in this.

Jennifer: But I also work with clients who have gone to see doctors who do not. The reaction that they have shared with me has broken my heart, because I know that while I'm upset, I cannot imagine being in their shoes, being told that, and they want to just crumble. So, it's important to me to share about this. So, first of all, Briana, you are on Instagram.

Briana: Yes.

Jennifer: You've got your own YouTube channel.

Briana: Mm-hmm (affirmative).

Jennifer: You've got websites. Also, too, people can reach out to you personally. You're also a part of ITSAN. Correct?

Briana: I'm not a board member.

Jennifer: Okay.

Briana: I work alongside them. Yeah. They're incredible. I love them. I support them. I'm just not a board member. I actually did that on purpose. I don't want anyone thinking I'm affiliated, that I have an agenda or anything. I'm just a person trying to raise awareness about this.

Jennifer: So, you were sharing with me, before we went on, that if people are interested, you have a GoFundMe.

Briana: Mm-hmm (affirmative).

Jennifer: If they found value. I think that's one big thing here, is that we need to support this community and make sure that this awareness continues to happen. So, you've got a really great GoFundMe that people can support. So, we'll link to that. You were also saying, too, that ITSAN donation page, also, is available, that people can go and donate to ITSAN directly.

Briana: Yes.

Jennifer: I really appreciate you for doing this. It means a lot, not just to me, but to my … I have clients that feel like … They were like, “Oh my gosh! This is amazing! You're going to have her talk on this show!” Super excited. I just feel incredibly grateful that you were willing to be here, and I hope, maybe, at some point, I can have you back and we can talk about some other facets of this crazy journey that happens to a lot of people, probably a lot more people than we even realize.

Briana: Yes. I think that's a big thing. There's probably a lot more people going through this than we actually even know about, because they don't even know if they're going through this. They might just think they have really bad eczema, or really bad skin, and it's a drug that they're using that's doing this to them.

Jennifer: Yeah.

Briana: Yeah.

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

Briana: Yeah. No. This has been great. Thank you so much for having me and letting me talk a little bit about this massive journey that some of us have been on.

Jennifer: Absolutely.