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If you’ve been told there’s “no proof” of Topical Steroid Withdrawal Syndrome (TSW) – only that you have severe eczema…this is for you.
For a long time, Topical Steroid Withdrawal has existed in a strange limbo. Loud and visible in online communities, but not clearly defined in many medical settings.
That disconnect has real consequences. TSW warriors are dismissed (and handed MORE steroids). So they stop going to their doctors, instead trying to piece together answers from social media.
While there are pros and cons to everything you choose to do, it’s beyond time for conventional dermatology to take the severe, life-wrecking symptoms of Topical steroid withdrawal seriously.
What’s blocked progress for a long time is real, credible conversations in the medical literature about what TSW actually looks like (from respected doctors who believe it’s a real thing).
The absolute lack of clarity (aka. diagnostic criteria) has left many doctors unsure of how to proceed, while medical journals publish papers dismissing people who are deeply suffering, labeling them as “steroid phobic” rather than asking if perhaps TSW is real.
Finally we have a paper published in December 2025 with the first ever diagnostic criteria for Topical Steroid Withdrawal Syndrome (TSW), after many years in the works.
Joining me to discuss is Dr. Olivia Hsu Friedman, DACM, L.Ac, Dipl.OM. She is the owner of Amethyst Holistic Skin Solutions and treats eczema, TSW, psoriasis, and acne patients all over the world via video conferencing using only herbal medicine.
Dr. Friedman earned a Doctorate in Acupuncture and Chinese Medicine as well as a diploma in Traditional Chinese Medicine Dermatology. She is the Chairperson of the American Society of Acupuncturists, and serves on the Advisory Board of LearnSkin as well as the faculty of the Chicago Integrative Eczema Support Group sponsored by the National Eczema Association.
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In This Episode:
- TSW symptoms versus severe eczema: Why this paper will help doctors
- 4 hallmark signs specific to topical steroid withdrawal syndrome
- What are TSW zingers (and what do they feel like)?
- TSW red sleeves skin rash pattern (and where else this shows up on your body)
- What is TSW elephant skin?
- How future rebound flares can mimic a resurgence of TSW
- Next steps for TSW to officially become a diagnosis
- Patience advocacy: How this paper can help your doctor so you don’t get blown off
Quotes
“Red sleeves or erythema… that’s one pattern. There's also very, very oozy patterns [and] patterns where people are so extremely dry, their skin looks incredibly malnourished.”
“The biggest results that came out of that was identifying what the TSW community calls snow, so this excessive flaking, and zingers. That's really something very different than what other people describe for other conditions.”
Links
Find Dr. Friedman online | Facebook
PUBLISHED PAPER WE DISCUSS IN THIS EPISODE → Topical steroid withdrawal syndrome: developing diagnostic criteria through a modified Delphi method
412: How To Get Diagnosed With Topical Steroid Withdrawal Syndrome (NEW Guide To Help Your Doctor) w/ Dr. Olivia Hsu Friedman {FULL TRANSCRIPT}
Jennifer Fugo (00:27.917)
I am so excited to have you back on the show, Dr. Friedman. Thank you so much for being here to talk about topical steroid withdrawal syndrome, TSW symptoms and more.
Olivia Friedman (00:33.708)
It is absolutely my pleasure. I think that your show is really, really great information, so I'm always really honored when you ask me to come.
Jennifer Fugo (00:41.157)
Well, and this time, it's a big, I think this is a big deal, because what we're gonna share today has been something that people have been asking for, for what? A decade at this point in time? I mean, it's a big deal. So I'll give everybody a little bit of backstory.
Olivia Friedman (00:57.315)
Yeah.
Jennifer Fugo (01:07.197)
I am on Dr. Peter Lio's published papers list, and he sends out these emails to me multiple times a week with papers. And all of a sudden, popped into my inbox, I think it was some point, yeah, it was last month. Well, for those of you watching, it was December 20, 2025, that a paper called “Topical Steroid Withdrawal (TSW) Syndrome: Developing Diagnostic Criteria through a Modified Delphi Method” was published in the British Journal of Dermatology, which is a big deal. And so for those who have a concern about topical steroid withdrawal and those who are going through TSW now, or have kind of gone through it and passed beyond and have finally healed, I mean, for you, this is a big deal because you're a part of this paper. You were a part of making this happen.
And so I wanted to help everyone understand the significance of this because everybody's been clamoring for, can't somebody do something? Why can't we have an actual diagnosis? And now, I think maybe we're there. I don't know, you tell us.
Olivia Friedman (02:14.636)
No, we're not quite there.
Jennifer Fugo (02:17.212)
We’re close. Okay.
Olivia Friedman (02:45.904)
I will say this is a starting point, and the whole purpose of this paper is to really get the conversation started, to actually determine what is diagnostic criteria for TSW? As anybody who has the condition knows, it's not something that's in medical journals right now, and that's probably some of the frustration that most people have is when they go to see their doctor, a lot of times doctors have no idea what this is, and they have either never seen it or it's not something that's taught in medical schools. So the only time when a doctor will probably know is if they've seen multiple patients with this. And I think a lot of my patients have actually said that it's very frustrating because a lot of doctors have not seen a lot of different people who have it, because once they have it, they're less likely to go back to their doctor, and they start to seek out alternative care.
Jennifer Fugo (03:08.06)
Yeah.
Olivia Friedman (03:15.824)
So that's one of the reasons why I've been so involved with this condition. Oftentimes, traditional Chinese medicine is one of those alternatives that people go to, and we typically see people when Western care does not do enough for them. So I have been treating TSW patients from the beginning of my practice. And it all started when I met Kelly Barta, very accidentally, at a National Eczema Association meeting, and she just happened to be sitting next to me and I was just making nice conversation with her and she told me that she had it and, you know, everything I'm telling you has already been exposed in a book that she's published so I'm not saying anything that's against HIPAA here. But she told me that she had this, and is there anything I could do about it? And I said, well, I could try.
And I ended up treating her and she got better, and she started telling other people at ITSAN because she was the then-president of ITSAN, she's the president now again. And people started telling other people, and before you knew it, the majority of my clinic started to become TSW patients. So I've been in this space for quite some time now, and I feel like I know quite a bit about it as a result of seeing so many different variations of the condition, and so that's why it was a real honor to be part of this paper. Not a lot of people in traditional Chinese medicine get to work with a lot of different doctors to do these things, and right now it is, I think, Western doctors tend to write more of these types of papers and get more credibility for writing them. So I was really lucky to be able to be part of this team.
So just to give you an idea of how this all came about, there were a number of us who were meeting at conferences every year and we'd get together and have a meal together, and we just started talking about this. And we thought, something should be done about this, and maybe it should be us. So we started a steering committee, and the steering committee started with Peter Lio, Dr. Peter Lio, who's a board-certified dermatologist, probably everybody knows that, myself, who is a traditional Chinese medicine doctor, we had Sarah Harris, who was a TSW patient advocate, and then we had two medical students, or at least they were medical students at the time, but the paper took quite a while to actually put together and get published and they are now doctors, and that is Cynhia Hsu as well as Lily Guo.
Olivia Friedman (05:43.489)
So the five of us actually worked together to basically develop what the study time frame was going to be, to determine what the selected panel would be, and then to basically come up with what are the actual topical steroid withdrawal symptoms that we would want to put together as possible things to agree upon. So what we did was we put together a Delphi study, which is essentially trying to bring together a number of different experts who are supposed to be anonymous, but because the dermatology space is quite small, we all kind of knew each other. It's supposed to be anonymous, and we're supposed to come to consensus about what we're actually discussing. And in our case, it was about what is the actual criteria for a diagnosis of TSW?
So the steering committee, and mostly Cynhia and Lily, I have to give them a lot of credit because they did so much background work, they basically looked at all the existing literature out there. And I mean, it goes far back to 1999 when Marvin Rapaport had his first paper, all the way to now.
Jennifer Fugo (06:48.562)
Oh, wow.
Olivia Friedman (07:13.242)
There were 46 articles that we actually retrieved, or they retrieved, screened all of them to look for different symptomology, came up with 35 different statements that we could actually consider as part of our process. So it was all based on literature. So, a lot of people say, oh, there's not really much out there. Well, there's actually quite a bit out there, it's just that it's been out there in different ways that not everybody has culled together in one place. So we did have quite a bit of information to draw upon, and then we also had our own experience as well.
So initially, we brought together 15 different individuals to be part of this Delphi study. And what we wanted was a number of different people from various backgrounds so that we could have a lot more diversity in the types of answers that we were getting. So it wasn't just people who were seeing adults, but also people who were seeing kids. We wanted people who have, you know, pretty prestigious positions at universities because we didn't want just any old doctor to be part of this. We wanted people who had had numerous opportunities for authorship and were contributing to journals on a regular basis so that they are credible, right? So we didn't want just anybody to be part of this. And I think that brought a whole level of gravitas to what we were doing. And that was a really, really important thing.
We also got people from all over the country. So it wasn’t just one particular institution or any one part of the country, so that we could say, no, we brought people from all over the country. And we also brought in somebody from Australia, Dr. Belinda Sheary, who has written quite a few papers on TSW to date, and that way we had a little bit of an international part too. Now, is it the most inclusive list of people? No, we probably could have done other things too, but as we said, this is a start.
Jennifer Fugo (08:52.858)
Yeah.
Olivia Friedman (08:54.504)
And this was the best we could do at this moment, and our hope is that this leads to more. So essentially, we started out with 15 different individuals. They were all people who were board-certified and all the other credentials that were important, we started out with 15. When we started to do the first survey, which is basically to put out the different ideas of what symptoms we would want to look at as criteria, there were 12 people who actually responded to that, and then we had 11 people after that. So the amount of people who actually stayed through the entire course of the study was good, and this is very typical, that when you have any kind of study, that there's always some people who kind of fall out over time. This was actually a really good turnout in terms of who and relative to other studies.
Jennifer Fugo (09:50.748)
Do you mind if I just intercede for a moment? One thing I think that is really important to mention is that I think that first study was in 2022. And I think that's important to mention. And that was what I saw when I read the paper, because you guys have been working on this a long time. So for everybody who's going, oh, you did all this stuff, this has been in the works for years. You have been working hard at this for years.
Olivia Friedman (10:15.504)
Yeah.
Jennifer Fugo (10:20.763)
I think that that needs to be stated over and over again, that it might've felt like nothing was happening, but you all were working on this for years, fighting for these topical steroid withdrawal syndrome warriors. And hopefully, the hope is that we'll somehow figure out how to do this better so that this doesn't happen anymore. But anyway, I wanted to mention that, because I think that when you sit with that, the fact that now we're having this conversation in 2026. So if you had put that study out in 2022, it's possible you may have even been having ideas about this even before that, I would assume. You all have been working on this for years.
Olivia Friedman (10:56.387)
Yeah. And that's a really great point to bring up, because I think one of the things that people should know a little bit more about, too, is what the journal process is. And that has been something that's been really eye-opening for me because, you know, there's always this sense of, well, you just write something, and you submit it, and then they publish it. And that's not how it works at all. Every single journal has peer reviewers. And so what that means is your paper goes through a number of different individuals who read this, who have background in that area as well, and they basically pick apart your paper to make sure that there's no possible way that you have not uncovered every single stone that's possible, that you have not mistakenly, you know, confused this with something else, or some other differential diagnosis, that you have considered every single way that maybe this is not quite, or that you have some limitations, or there's some shortcomings, or whatnot.
And when we first submitted the paper, it came back to us with a lot of comments, and they were all legit. It's not like people are trying to pick it apart and say, no, we don't want you to ever publish this. They're saying, no, we want you to publish this, but we want you to make sure you've thought of everything so there’s now way, I mean, there's always people who are going to detract from it and say that there's no way.
Jennifer Fugo (12:18.438)
Sure.
Olivia Friedman (12:26.688)
But they want it to be as credible and as legitimate as possible. So the number of notes that we got. I mean, you would be surprised. I mean, they can be like 25 to 100 different things, and every reviewer can have very different opinions about what they think you should add to the paper or whatnot. So a great example is something like this. At one point, somebody had raised the issue of, well, have you guys done any biopsies? Do you have anything that actually proves that this is a completely different condition than, say, atopic dermatitis? And so we actually had to go out and get biopsies.
Jennifer Fugo (13:01.329)
Oh, wow.
Olivia Friedman (13:15.862)
The unfortunate thing is that the biopsies were not conclusive. They did not show extremely different things than something that atopic dermatitis would be. But that didn't necessitate that that's not something different, right? A lot of different things can mimic a condition. So at the end of the day, there were a number of different things where we had to say, okay, this is a condition of exclusion where you can say it's not this, it's not this, it's not this, but it's not always easy to say it is definitely this, because it's totally different than anything else. We have never seen this in any other condition. So those are kind of some of the things that we dealt with when we were going through the process of actually writing this paper.
Jennifer Fugo (13:59.345)
Yeah.
Olivia Friedman (14:15.598)
So I want people to know that, because I think there's always this sense of, well, you just do it and it just happens, and it should be simple, but it's not. It's a long process, and this was not the only time the paper was returned to us. It actually came back to us a couple times. So, you know, if you have a hundred notes that you then have to respond to and one of them is like, go get biopsies, I mean, that takes time. Like that's not something that we can just get overnight, right? So we actually had to find people who were willing to do that, actually have the test run, and then have the results brought in, and that's not something that happens overnight either. And that was just one note, right? And we have to get to all these other things that they have said, and then submit it again.
Jennifer Fugo (14:31.662)
Right. Yeah. I was going to say too, I've been in some rooms with you where, like at Eczema Expo, for example, there's always TSW groups, and you can hear the frustration in the voices of people who are living with and suffering with these conditions, some who've healed, but most of them are currently still in that boat. And they're like, but why not now? Why? It feels, too, that individuals, like if they go on Facebook, it's very obvious what TSW is, right? Because there's a lot of Facebook groups, and people, between TikTok, Facebook, Instagram, et cetera, social media has really created this, I don't know, it's like a social media diagnosis in a sense.
But I think what I would like to ask you is that, did this process, do you feel like it's cemented what people are seeing consistently within the kind of social media, and I don't mean to say it in such a way to delegitimize it, but there can be sometimes challenges with Facebook groups. Like, I'm in these Facebook groups, and sometimes I'm like, that's not TSW. Like, I've worked with enough clients to know and look at and hear what they're saying and be like, that's not TSW, it's just really not, and that it's not appropriate what they're being told to do by what's happening in this group.
You now have something, at least, that's a little, you have a very thought-out process. Like you said, it's the beginning of something, but do you feel like there is a difference between what people are saying TSW is in these, say, Facebook groups and online, versus what more of this diagnostic criteria that all of you have put so much energy and years and time and thought and consideration into creating?
Olivia Friedman (16:24.534)
Okay, so I will say again, as I said before, this is a beginning point, not the end.
Jennifer Fugo (16:28.867)
Yeah. Right.
Olivia Friedman (16:54.488)
So one of the things that we came across is that there's so many different symptoms of TSW, and there's so many different phases of TSW, right? You know, I myself have been a big proponent of the fact that I at least see many different patterns of it, and what most people think of TSW in terms of red sleeves or erythema and things like that, that’s one pattern. There's also very, very oozy patterns. There's also patterns where people are so extremely dry, their skin looks incredibly malnourished and whatnot. And there's a lot of things in between. So that was another choice that we had to make because it got to be so voluminous in terms of how many things we could be talking about that no paper can cover all of this. So we had to make some choices.
Jennifer Fugo (17:15.195)
Hmm.
Olivia Friedman (17:25.776)
So there was actually a paper that came out by Hajar, I'm not sure if that's how you pronounce it, it was like in 2015, and they sort of differentiated that there was these two different patterns. One was the erythematous edematous type, and then there was another one. And so we kind of felt like we probably have to choose one for this paper, and then maybe we can discuss more later, or somebody else can actually talk about it more. And the reason why we chose that was because it was the most clinically dominant one that comes up whenever you read papers about these things. So then that would be supported by past papers that actually was out there. It actually had the most significant morbidity as well. So we thought that that was a really important thing to focus on.
And then it's also really challenging for some of these other symptoms to not be considered mimickers of other conditions. So we wanted something that really was different, that we could point to and say, no, these symptoms are definitely different than anything you see from anything else. There's no way you can confound this with something else. And so that was another choice. You know, there were a lot of different symptoms that we were kind of batting around as the steering group. And I also wanted to include the emotional, psychological component that's involved, but then it starts to become this whole bigger thing that it was just too much to grapple with.
Jennifer Fugo (18:29.936)
Mm-hmm.
Olivia Friedman (18:55.472)
So we felt like it was really a good idea to focus a little bit more, get this out on the table, then we can build on that with other authors who do other papers and whatnot. And the other one was like the papular pustular, so that was the other type that had been distinguished in this paper. So again, I would say we came up with 35 different statements of symptomology or whatnot that people had to decide if it was an important part of diagnostic criteria or not important part, and from those 35, it kind of fell to these particular symptoms.
So after the first, I mean, in order to make consensus, we had to have at least 75% of the people say, this is important, 75% or more. And then to eliminate something, we needed to have at least 50% or more of the people saying it's not important. And so, as you would imagine, we're probably getting a lot of different people saying different things. But in order to have some amount of consensus, we had to agree on something, right?
Jennifer Fugo (19:41.126)
Mm-hmm.
Olivia Friedman (19:55.265)
So that's the threshold that was out there. So that's how that 35 got minnowed down. So the biggest results that came out of that was identifying things like what the TSW community calls snow. So this excessive flaking. And then this idea of zingers, or sparklers.That's really something very different than what other people describe for other conditions. The red sleeves, or the sleeve sign, where you have erythema that just cuts off at the wrist, and it's super red up above, but it doesn't go past that. And you can also see that in the legs as well, to the feet. And then elephant skin. And those were the things that just kept coming up that everybody felt very strongly that absolutely has to be part of this diagnosis, or the symptomology that goes into diagnostic criteria.
Jennifer Fugo (20:29.572)
Mm-hmm. Yep.
Olivia Friedman (20:55.208)
A lot of the other symptoms, again, they sort of can show up in these other places. So we felt like, let's stay away from them for now. Let's put out the ones that are very, very definitive, and then let's start there. So that's where we ended up in terms of the beginning of diagnostic criteria. So to answer your question, it's not the end. It's definitely the beginning. And I really am happy that we have something to base things on and to move from here. And then whoever wants to author the next paper that can take us into other things, I mean, it will be a lot more accepted because this one is out there.
Jennifer Fugo (21:31.515)
Yeah, and I think that's important. I think for me, I always worry because I've had so many clients where they sort of self-diagnosed themselves with TSW, and then in reality, they really had a severe staph infection. They didn't have TSW. There were things that weren't, that I think sometimes get missed when we're in a well-meaning, but you know, a variety of opinions of what's going on, and sometimes in that social media space we can't necessarily, we just have to be careful. I think that's the biggest, most important thing is that you have to be careful because you can be led astray, and it's important to look deeper. And so I'm glad that you guys are doing this.
I think for, as you said, this is like the first stepping stone, we'll say, in the process. What do you feel are the next steps beyond this? Like this was published in a British journal, so does that help those of us in the United States? Could that have any impact on how the FDA might label medications, or maybe that's a totally separate issue? I do know that there have been hearings held in front of the FDA, and many of, I mean, goodness, Abby Lai up in Canada came down to speak at it. I mean, you and I both know many people who went to go speak in front of the FDA and tell their story. And yet still today, there is no change to labeling. So what would be some of the next steps that we could hopefully see in the future?
Olivia Friedman (23:08.844)
Yeah, well, before I go into that, let me just address the British journal. Also, in terms of making sure that we're putting our best foot forward with this paper, we don't just want the best people to be able to talk about this and also put together research that can be seen as credible, but we want to put it in a place that also has that prestige so that it actually is taken as a legit paper. So if you just publish it anywhere, it doesn't have that same gravitas as when you put it into a journal that's very, very well-regarded. And a lot of people may not know, who are not in the medical community, that the British journals are actually some of the most prestigious in the world, and to actually be accepted by the British Journal of Dermatology was a huge coup for us. There are a lot of different medical journals, and they all have different ratings in terms of what their role is in the medical field and how well respected they are, and most of the British journals are pretty well-respected.
So, people might think of, well, this is British versus American versus Australian or whatnot. But you have to think of them as a collective of all journals. And when doctors actually go to look at different journals, which are the ones that they're looking at and saying, this is probably really good information that has really had the peer review that's at a very rigorous level, and so I am more likely to believe that this is very well done research, versus Joe Schmoe who has, you know, a medical newsletter and is like publishing things, right? So it was very important to actually put it in a journal that gave us that ability to also put another layer of credibility and legitimacy on it.
Olivia Friedman (25:09.216)
So to answer your question about where do we go from here? You know, I think there's a lot of different steps that we have to take. I think, simply saying, getting this paper out is a step, in terms of educating people that steroids can, in fact, do things that we did not realize. And also, the one other thing I wanted to mention is that lots of people come off of steroids and have a refractory response, where they're basically having the same condition that they had before, and they're mistaking that for TSW.
Jennifer Fugo (25:40.316)
Yeah.
Olivia Friedman (26:08.996)
Instead of recognizing that the steroids were actually masking all of these things, right? So, in terms of what can happen next, is I think there definitely has to be an understanding of what is the stewardship of steroids. I don't know that there is something that's standard of what absolutely has to be done, and it has not been enforced either. If there is this, I mean, I think there are lot of doctors who say you should be on them maybe two weeks, and then come off them and whatnot, but I don't think it's a standardized protocol that every single doctor follows. So there needs to be something to that degree, or at least an understanding that these are the risks of taking it and that there can be some populations of people who can have a response to it. So that's definitely education.
But we have to go beyond that because if we want our patients to be treated, it has to be part of the ICD codes too, right? And they can't just go to the doctor and have insurance pay for these appointments, or medications, or whatnot. I mean, oftentimes doctors have to write it off as something else, right? So that's something that has to be changed, and that's the medical system. Legislators should be brought into this as well because this is really saying, to me at least, and this is my own personal feeling, is that yes, while we're doing clinical trials on all these drugs, are we really doing a good enough job on all of them? Because the other thing that, it's very, very apparent to me, because I actually used to have a career in advertising and I used to place media, and every single pharmaceutical company not only placed their ad, but they had three other pages of all their disclaimers and all the other side effects that they could get. So we know that every single medication has side effects, but how seriously are we taking this in terms of how it's impacting the general public?
So we are in a better place than we were before because there was a day and time where we actually didn't even do clinical trials, we just put things out. So we at least have that, and we at least have third parties doing the clinical trials. So that's a positive move. But we probably have to look at this information a little bit more deeply and say, you know, should we be putting out some of these things? Because there's a lot of side effects that are really very serious. And I always joke with my husband when we're watching commercials come on TV, and they'll say, side effect is like death and suicide.
Jennifer Fugo (28:13.834)
Death.
Olivia Friedman (28:14.393)
And I'm kind of like, how can that even be something that's allowable?
Jennifer Fugo (28:16.024)
I know, it's like liver disease, the flu, and then like kidney issues, renal failure, and death. And I'm like, really? Death?
Olivia Friedman (28:24.93)
Right. Yeah, so I think our system needs to continue to look at these issues. You know, this is the way the world goes. We start with something, we make it better, we see that there's more problems, we make that better. There's still problems, and it's a continuous process. I don't think that we can just say any one person or any one group is wrong and bad and terrible. But this is the process of medicine.
And one of the things I was looking into prior to talking to you is this idea of iatrogenesis, and that's something that we're taught in Chinese medical school right off the bat because we end up treating people who have these problems. And iatrogenesis is basically a side effect, a negative side effect as a result of treatment, medical treatment. So that's something that we learned right off the bat, that this is what we're going to be dealing with the rest of our lives as practitioners in TCM. And I was looking up stats just to see, where do we stand in the world right now? And iatrogenesis is actually one of the top five killers of the world.
Jennifer Fugo (29:36.602)
Wow.
Olivia Friedman (29:38.945)
Yeah. So I mean, we have known for a really long time. And this word was actually coined as early as the 1800s. So as early as the 1800s, we've known that medical treatments can oftentimes lead to adverse effects.
Jennifer Fugo (29:41.04)
Yeah.
Olivia Friedman (30:08.918)
And we now call them ADRs, which are adverse drug reactions. And the unfortunate thing about that is we don't really have a great system to track that. Hospitals are supposed to do that, but regular practitioners, even practitioners of my own type, that's not really a thing. There is no centralized area where you're supposed to be putting those things in, so we don't really have an accurate measurement of those kinds of things.
Jennifer Fugo (30:27.004)
Yeah. And I think to your point, and this is something that I deal with on the clinical nutrition side, is that medications can deplete nutrients. Sometimes they can cause an excess, like there can be potassium-sparing drugs, like certain diuretics. So if you were to take a high potassium electrolyte drink every day and you're on one of those drugs, it's not a good combo because excess potassium can actually cause serious adverse health issues.
But the same can be said of like, for example, statins deplete CoQ10. It's a known side effect. And if you deplete CoQ10 sufficiently enough out of your system, it impacts mitochondrial function and can lead to not only muscle cramps and fatigue, but can also increase your risk of having a cardiovascular event. So every single medication, a lot of times we'll ask clients, what medications, over the course of your life, can you remember you've been on? Oh, you took acetaminophen, how long did you take that? I took acetaminophen a ton in my 20s because I had constant headaches, but that depletes different reserves in the body that are important for liver detox. So there's always a consequence, whether it's a medication that was prescribed or it was bought over the counter. And so I think we have to always have respect. And even, to be fair, some herbs can also have some really negative side effects too.
Olivia Friedman (31:47.68)
For sure.
Jennifer Fugo (31:51.792)
Which is why you and I've always talked about, and even with the conversation about topical steroid withdrawal syndrome and berberine, it's like, this is not for everyone. There can be problems.
Olivia Friedman (31:57.355)
And it shouldn't be taken at thousands and thousands of milligrams. You should probably have some supervision when you're doing these things.
Jennifer Fugo (32:03.024)
Correct.
Olivia Friedman (32:27.338)
So, absolutely. So, I don't think there's, I mean, when people get really angry about TSW [topical steroid withdrawal syndrome], I think if you zoom out and you kind of look at the history of medicine, this is not the first condition that has been caused by a medical treatment. It's not going to be the last, unfortunately. And the way we learn is to basically see things happen and then determine what do we need to do now as a result of this? And that's kind of how we learn.
And one of the greatest examples that I always use is when I was traveling in Paris one day, I went to see the catacombs, and it's all these bones and skulls and whatnot. And you kept seeing all these skulls that have these holes, like right here in the forehead. And finally, I said, why is that? That's kind of strange that there's so many of them. And she said, well, back in the day, we used to believe that when people were crazy, they had spirits that were in their head that needed to be released. And as a result, what the doctors would do was drill a hole in your forehead and allow the spirits to come out. And then what they would do is fill it with wax or cork, and that's how you would go on with life. So, we've come a long way!
Jennifer Fugo (33:23.238)
We've come a long way. Oh my.
Olivia Friedman (33:25.14)
In terms of what we feel is medicine, right? So I always use that as an example of, okay, you guys are angry about this, and you have every right to be, but medicine has come a long way in terms of where we have started from, the beginning, to where we are now. And we're never going to be perfect.
Jennifer Fugo (33:43.631)
No.
Olivia Friedman (33:54.977)
We're always going to be finding new issues, finding new problems. And this is not to condone everything that's happening, but this is kind of the way it goes. And our hope is that we will continue to do the research. We will continue to look into things very, very rigorously to figure out why these things are happening, and we will solve them. But it all starts with something happening and then having the right people looking into it.
Jennifer Fugo (34:08.039)
Yeah, absolutely. It's so funny, I did not know that about the, my gosh, the forehead thing. I think of like, lobotomies as one example of things. And I think even that doctor won a Nobel Peace Prize, or some type of Nobel Prize in medicine, and we do not do those now because we know better, right?
Olivia Friedman (34:17.378)
Right. Or how about electrocution, shock therapy?
Jennifer Fugo (34:37.509)
Or using leeches to bloodlet and all sorts of things. They used, I think, consumption was tuberculosis, and I think at one point they were trying to use gold as the treatment for it. We don't do that. And I understand at the same time, when you're in it, when you're like really in a condition, and especially when you're severely suffering, none of this makes you feel any better.
Olivia Friedman (35:00.876)
Right, for sure.
Jennifer Fugo (35:01.519)
You know, because it's like, I didn't want to be in this place in the first, I just wanted to get better and I trusted somebody. Never asked for this.
Olivia Friedman (35:06.402)
Right. I never asked for this, and I trusted somebody and they did this to me, and here I am, and this is so unfair. And I totally get that. I know I see it every day, and I completely give my heart out to all of these people. And so, yeah, I'm trying to do my part. Dr. Lio's trying to do his part. I mean, there's definitely people out there who see this and understand it and want to do something about it.
Jennifer Fugo (35:35.186)
I think what could be just maybe a good point to leave everyone with is, now that obviously this paper is what it is, it's been published, this is a big deal, good first, really good first step, what could listeners do that would also be helpful? Because obviously they're not gonna be doing another, a regular person like me, and maybe the listeners, are probably not gonna be out there like, okay, we're gonna submit the second paper, we're probably not gonna do that. But what could we do that might also help from maybe like a different perspective, to get the word out to change things?
Olivia Friedman (36:14.146)
Yeah, absolutely, i think there's a couple things. Joining ITSAN is always a great idea because ITSAN is always doing all different kinds of things to advocate for people in this space. And it can be as much as educating other people who think they might have it but don't know, and it can be actually educating legislators, which is a really, really important step. I think they also get involved with working with doctors and things. And so there's a lot of different opportunities there. I believe they have a number of different registries that you can actually input all of your symptoms and things like that, and the more information they can cull, the more they can actually help doctors, like myself and others, write papers and do things like that. So that's one thing.
The other thing I would say, if you're a personality who likes to do things like TikTok and things like that, getting out there and telling your story definitely helps, and I think it helps others find you, and someone who doesn't know that they have it or is suspecting that they might have it, it gives them a chance to actually build camaraderie with the people who do have it and find that community. I think there have been a number of different, I mean a lot of my patients actually have gone on TikTok and actually put out their stories, and actually had a lot of followers come to them. And I think it's building that community so that you have support is really important, and to be in groups that provide that support.
It's a harrowing disease, or condition, and I think that people really need other people. Sometimes it can be a little much because sometimes people are really, really suffering, and it becomes a downward spiral watching everybody when you're actually starting to heal. But I do think it's a good idea to know that you're not the only one who has this.
Jennifer Fugo (38:41.277)
Yeah.
Olivia Friedman (38:43.836)
You're not the only one who has this symptom, and to get ideas on how to treat things. And I think a lot of these forums they do talk about different management protocols that they put in place, what types of sympathetic doctors to actually look out for, things like that. So I think all these different ways are different ways that people can get involved or provide a group for themselves so that they feel supported. Because oftentimes what I find is that friends and family oftentimes try to be there, but they don't always understand what's really going on in your mind, and it's sometimes hard to discuss with them how you're feeling about things because on the one hand, you're trying to be you know grateful that they're there to help you, but on the same note maybe they don't really know how to help you. So I think it's good to be around other people who are going through it too.
Jennifer Fugo (38:55.985)
Yeah, and sometimes they're, I don't want to say their patience, but their empathy can start to run dry after, they don't understand that this may be a multi-year situation. They may expect you to get better in like a month, or two months, or six months, and after that point, or I've also seen where the choices the individual has made about how they want to heal, the family does not support because it doesn't make sense to them.
Olivia Friedman (39:27.81)
Right. For sure.
Jennifer Fugo (39:27.921)
So it is not uncommon that there's some issue of runway. Like you're like, I got this far with my family or my friends or my spouse, but they just sort of couldn't go any further with me. They don't have it in them. And it leaves that person feeling really alone on that journey.
Olivia Friedman (39:48.163)
Yeah. I think the emotional, psychological part of it is such a huge thing, and again, that's one of the reasons why I wanted it to be part of this paper, and it just got to be a little unwieldy to identify all those different things. But I think also seeking out a therapist's help is incredibly important, because this is something that you can be better one day, and then the rug is pulled out from you the next day. And that uncertainty really wears on you over time, and it really takes away your hope and takes away your ability to live an everyday life, and you start to be in a very dark place as a result of it. Most families are not equipped to deal with that.
So it's really great to have somebody in your corner who understands that, and most therapists, this is what they do, this is what they understand. It also helps to have someone to kind of help you reframe things because you oftentimes will ruminate over something, and it gets larger and larger and larger, and sometimes you just need someone to kind of say, hold on, maybe we want to look at it this way, and this is a much more manageable way to look at it, instead of what we're kind of doing in our own heads.
Jennifer Fugo (41:00.858)
Yeah, to build that resiliency, that mental resiliency is such a huge piece. It's hard when you're sick, because it feels like you don't have any more to give to put energy into that. I oftentimes find that clients who are willing to go that route as well actually, in a sense, kind of heal faster because it, like you were saying, ruminating and all that, you get so stuck that you sort of start to run dry of the energy you have available to do everything else. And I think there's a lot to be, I've talked about that a lot on the podcast, the benefits of getting help with a therapist. And the therapist doesn't have to know exactly what topical steroid withdrawal syndrome is. They don't need to understand that specific piece. But many have experience with people who have a chronic illness, and so at least from that perspective, they can be really, really valuable.
I'm just so excited for you. Congratulations on getting this published. Another paper is so amazing. You do such amazing work, Dr. Friedman. Are you still accepting patients for those who are looking for help?
Olivia Friedman (42:09.934)
Thank you. Yes, I am.
Jennifer Fugo (42:20.166)
Well, I will make sure to put your website in the show notes so that people can connect with you if they're looking for, and you do just, it's just herbs, right? Over like a telehealth-type situation?
Olivia Friedman (42:35.022)
Yeah, so I went to 100% telehealth because I realized that there were people all over the world who really needed help, and a lot of people just didn't have any options in the place that they live. So I went to 100% online, I do everything through Zoom. I'm able to ship herbs to people all over the world, with the exception of a few countries who just don't allow things from the United States.
Jennifer Fugo (42:59.676)
It happens.
Olivia Friedman (43:05.139)
Or, you know, they have really unusual rules for customs. But if you don't have those, usually we can work together.
Jennifer Fugo (43:07.054)
Awesome, well, I'll make sure to put all that in the show notes as well as the link for this paper, because I do think if you're also trying to educate your doctor, this would probably be a good paper to bring to their attention. So at least they can see that the things that you've been bringing up in your appointments are not just some random thing that you read about on the internet or saw on TikTok. Like, actually, this is a legit thing. And obviously, as Dr. Friedman shared, this is in a very prestigious journal, so it is actually a really big deal that hopefully they will take seriously.
Olivia Friedman (43:40.258)
Yeah, and you know, we're also putting that responsibility in the patient's hands to be able to go give these papers to their doctors and say, hey, I read about this, I was wondering if you think this is what I have, I just want your opinion. That's a very nice way of allowing them to become educated on something they may not know about. So spread the word.
Jennifer Fugo (44:05.212)
Absolutely. Well, thank you so much for joining us again. It's always a pleasure to have you here.
Olivia Friedman (44:10.766)
Well, thank you very much for having me. As I said, I always enjoy coming on here. I always think that you have really quality information to share with people, and so whenever you ask me to come, I'm like, really, me? Are you sure? So thank you so much.
Jennifer Fugo (44:23.452)
Of course.
