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In this episode, we speak with Christopher Sayed, a dermatologist who has dedicated his career to studying and treating hidradenitis suppurativa (HS). HS is a condition that causes painful boils in areas like the underarms, groin, and around the breasts, and it can be a nightmare for those living with it. Unfortunately, despite being a common condition, many patients go undiagnosed and receive inadequate treatment for years. In this podcast, we explore the impact of HS on patients, the reasons for the lack of awareness and resources for this disease, and the steps we can take to improve the lives of those living with HS. Join us as we shed light on this often overlooked but devastating condition.

Christopher Sayed is a dermatologist.

He shares his story and discusses his KevinMD article, “Why does it take 10 years to diagnose this common disease?”

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Transcript

Kevin Pho: Hi, and welcome to the show. Rate and review at KevinMD.com/rate, and subscribe at KevinMD.com/podcast. Today on the show we have Christopher Sayed. He’s a dermatologist. His KevinMD article is titled “Why does it take 10 years to diagnose this common disease?” Christopher, welcome to the show.

Christopher Sayed: Thanks so much for having me.

Kevin Pho: So we’ll get into the article in a little bit, but first off, just briefly share your story and journey to where you are today.

Christopher Sayed: Sure. I did all my training at the University of North Carolina, and I’m on the faculty there; I have been there for about 10 years. During training, hidradenitis patients were always some of the toughest to manage, and it always felt like they left and I didn’t have that much confidence that they were likely to get that much better. I think the patients felt that a lot of times too. So it felt like there was this huge need to try to learn some new tricks to try to do better for those patients, and it really made me push myself to learn more about better ways to treat them, to learn how to do surgical procedures in the clinic, and to expand what we could offer them to make a better difference for them.

Kevin Pho: So why did you have such a specialized interest in hidradenitis?

Christopher Sayed: Yeah, mostly it was just seeing where the need was the greatest. I think we all get into medicine to try to help patients, and when we see patients that struggle, I remember learning in medical school that “the frustrated patient makes for a frustrated doctor,” right? Those were frustrating experiences, because those patients just didn’t get better most of the time, or at least not as well as I wanted them to.

So it was really just seeing where there were lots of people out there doing psoriasis and other things like that, and those things were easier to manage, and it was easier to find specialists in those things. Nobody was really focusing on HS, and it felt like this huge unmet need. It was intimidating starting off, but it feels like it’s paid off, because I feel like there’s more we can do for those patients. And getting out there and teaching others about it, getting the dermatology community more up to speed, has been a fun journey so far.

Kevin Pho: All right. And you talk more about that in your KevinMD article titled “Why does it take 10 years to diagnose this common disease?”, that being hidradenitis suppurativa. For those who aren’t clinicians and aren’t familiar with this condition, just give us a little bit of background and context as to what that is.

Christopher Sayed: Sure. It’s surprising that the general public doesn’t have more of a grasp on it, because it is such a common disease, and it’s really miserable. Patients basically get these painful nodules or abscesses; some people refer to them as boils, which will get painful over the course of a couple of weeks. They’ll often open up and drain and leak pus and blood. It’s often in places like the underarms and groin, so since it’s hidden and out of sight, it’s something that I think patients don’t want to have to bring up a lot of times and talk about. Even within families, a lot of patients haven’t told their family members about what’s going on, or it takes them years to come out and really say much about it.

And so since it’s hidden and out of sight, and there’s so much stigma around having chronic wounds in areas like that, it just doesn’t get talked about very much. As you can imagine, it comes up most commonly in the teen years and early 20s, and that is such a tough thing to deal with and to explain to other people in social aspects, whether it’s romantic or just even friendly relationships, what’s going on.

So yeah, it’s a huge challenge for those patients, and worse than almost any other dermatological disease. If you talk about psoriasis and eczema, people have a general sense of what those things are. They’ve never heard of HS, even though it’s also very common and probably much worse to live with than those other things.

Kevin Pho: And what are some of the general causes of this condition?

Christopher Sayed: So about 50 percent of patients have a family history, and so we know that genetics play a large role. We’re just getting to the point of doing some large genetic studies that are trying to identify some of the genes that might predispose, but it definitely tends to run in families to some extent.

And then I think, just like with other chronic inflammatory conditions like psoriasis or Crohn’s disease or rheumatoid arthritis, there are aspects we don’t understand, right? There are probably some environmental triggers that are out there too. It’s a mixture of the right genetic predisposition plus something else in the world, or just some randomness to it, because our immune systems interact with the outside world, and things can get triggered the wrong way sometimes.

So I wish I could answer that, because patients want to know all the time, “Why me? Why now?” And I say, just like those other chronic inflammatory conditions, it’s hard for me to tell you why exactly it happened the way that it did. But it’s much more akin to things like Crohn’s and rheumatoid arthritis than to infection. It looks like infection; it’s the body mimicking a response to infection, so it gets misdiagnosed as a staph infection or things like that all the time. But really it’s much closer to a type of chronic inflammatory disease that affects hair follicles, where they just get inflamed and that response is mimicked.

Kevin Pho: And what are some typical case studies of patients that you may see in your clinic who come to you for HS?

Christopher Sayed: Sure. Just like with other things, it can vary. Sometimes the onset is explosive, and very rapidly patients have terrible disease, with tons of scarring and everyday drainage, where they’re having to bandage themselves for 30 minutes just to leave the house.

But in a lot of cases, again, it starts in the mid-teens with an occasional small nodule. People think it’s just a bump from shaving, or maybe it’s just a little infected hair follicle, but then it goes on and on like that, over and over again, over the course of years, and then finally they hopefully get diagnosed. The title of the article mentions it takes 10 years on average to diagnose it, and that’s not historical data. That is data from a big global study just a few years ago, when people should be able to Google, “I’m getting boils,” and HS is going to pop up as the likely diagnosis.

But even still, I think patients don’t always connect the dots, and they’ve been told the wrong thing a lot of times, so they don’t go hunting for an answer at that point sometimes. They’re just hesitant to keep going to the medical community over and over again if they’re not getting clear answers over and over again. So yeah, it’s frustrating that it takes that long, but that’s why often what I see is patients who were misdiagnosed for years; it got worse and worse, and finally they get identified or referred to me. And then we try to work on treatment from there, which is more difficult because it’s gotten so much more advanced over the years.

Kevin Pho: So talk more about your article in terms of it taking so long to diagnose. What are some typical reasons why that is? What are some common misdiagnoses before these patients come to you?

Christopher Sayed: Sure. It’s definitely multifactorial. Again, there is this stigma that occurs, and that means patients often hide. So sometimes that first couple of years is patients being unwilling or not wanting to have to go and talk to a medical person and have their body looked at. Again, it’s a young patient who hasn’t done a lot of medical stuff, usually. So some of it’s that, and just hiding and embarrassment to some extent, because even with their family members, they haven’t told them about the symptoms they’re having, sometimes for a while.

But then they show up, and they’ve got one nodule they point out that’s just miserable, to the point they’ve had to go and get it drained. And so somebody just sees that one spot and says, “Looks like maybe you’ve got a staph infection.” They drain it or give an antibiotic, and then a year or two can go by, maybe, before the next one, when it’s early in the disease. So it can be confusing those first couple of years, but after a while, when it’s happening over and over again, it should be getting recognized.

And I think it’s an issue in the medical community. I started teaching our medical student course for dermatology years ago, and there was no mention of hidradenitis, right? We spent 45 minutes on psoriasis and 20 minutes on rosacea, and HS was not mentioned anywhere. It was really an injustice to the patients that this disease affects that it didn’t get mentioned more often. I think part of it was that the people who made those curricula didn’t have clinical interests in HS; they had clinical interests in other things. And so what made it into the curriculum did not reflect what was happening in the real world, I think.

So part of it’s that medical students could get through their training and never see a case of HS, or more likely, they’d see a case of HS but they were told the wrong thing. They were exposed in the ED, they thought it was an infection, it got treated a certain way, and they just didn’t know that this entity existed. And when it was mentioned, it was kind of obscure; it’s got this funny-sounding name, and I think people were kind of confused or intimidated by it to some extent.

But really, I always try to drive the point home: It is not a complicated diagnosis. If people have typical lesions, abscesses or nodules that are painful, in places like the groin and underarms, and if it’s recurrent, that’s HS. Nothing else really mimics that. So even a one-time nodule or abscess in those classic locations should prompt a question like, “Has it happened before? Has it happened in places like the underarm?” Or if it’s in the underarm, “Has it happened in the groin?” Because patients will tell you what’s in their underarms, but they might not mention at all the fact that they’ve had five other things like that in the groin before, because again, there’s this stigma and embarrassment, and they’re not prompted and asked about it specifically.

Kevin Pho: So take us into your exam room. I’m a primary care physician; let’s say I send one of my patients to you for suspected HS. Tell us, how would you work up this patient, and what would you do next?

Christopher Sayed: Yes. There’s not much of a diagnostic workup needed. It’s all clinical in terms of diagnosis: It’s recurrent lesions in classic locations over time. I don’t need to do lab testing, typically. We know these patients do have a higher rate of things like diabetes and dyslipidemia; their rate of cardiovascular mortality is twofold compared to patients without HS. And so I do screen for diabetes sometimes. I mention those things to patients and try to make sure that with their primary doctor they are getting screened for other things like that. And then there are a lot of issues with anxiety and depression in these patients also, and a lot of that’s linked to their disease, and so those are conversations I try to bring up at some point also, to make sure they’re coping OK with their disease.

But the number one thing they want is to feel better. And so I spend a couple minutes with every patient, again, reframing the disease, because they’ve often heard the wrong thing. They’ve been screened for STDs. So I tell them, “What you have is not contagious. This is a chronic inflammatory condition, just like if you had rheumatoid arthritis in your joints; it just comes up around hair follicles instead. And it’s not something where there’s infection. We treat with antibiotics not because we think it’s infected, but because your body probably overreacts to even normal skin bacteria, so we’re trying to change those things.”

So it’s really important to reframe the disease in their mind early on as a chronic inflammatory condition, as opposed to just an infection or something. Again, as much as I know it’s not contagious, and I think most of us know it’s not, they don’t know that until they’re told. And so I think for them it’s very heartening to hear those things out loud from a medical professional. So I always do a couple moments of education, and then I try to dovetail pretty quickly into, “OK, this is how we’re going to manage it, based on what we know.”

If it’s just bumps that come and go from time to time, we try to use medications mostly, or sometimes things like a hair removal laser if it’s in areas like the underarm and groin. When it’s more of the tunneling and scarring that’s happened over time, that’s where we think about biologics. Humira is FDA-approved for HS, and there are others that will likely be approved over the next couple of years that are just anti-inflammatory biologics.

And surgery is a big part of it too. Once those tunnels and scars develop, we often need to do procedures to address those areas, where the medicines get it calm. But it’s just like rheumatoid arthritis, right? If a joint has been destroyed and this remodeling has happened, sure, you can control the disease and the inflammation with medicines, but you’ve got to repair that damage that’s been done, and then you have to maintain that improvement over time by continuing medication. So for the worst patients, it’s a marriage of good medical management to stabilize and calm things down, surgical management for those areas that are going to be recalcitrant, and then hopefully maintaining that improvement as time goes on.

Kevin Pho: So from a primary care setting, if I see a patient with suspected HS, talk about some of the initial treatment options that I have. You mentioned counseling, which is something that we certainly will do. How about if we take the next step, in terms of initial management and what to prescribe?

Christopher Sayed: Absolutely. And again, some of that depends on how severe the disease is. But early on, there are lots of topical therapies that we use, like topical clindamycin, or some people use chlorhexidine washes or benzoyl peroxide washes. That’s often a very small part of the solution, but it’s easy enough to add those things on.

Antibiotics can work because they probably alter the microbiome in some way, rather than truly treating infections. So a week of an antibiotic maybe helps for a flare-up, and if a patient flares up just a few times a year, I often make sure they’ve got an antibiotic on hand. There is no great evidence that says one antibiotic is better than the other, but most of the time, the easiest ones to start with are things like clindamycin 300 milligrams twice a day, or doxycycline or minocycline 100 milligrams twice a day. But I’ve seen plenty of patients respond OK to Bactrim or lots of other antibiotics.

Some patients say, “When I’m on the antibiotic, I’m good. When I’m off, I’m really bad, and it always falls apart quickly.” And I think there are instances for longer-term antibiotics, whether it’s a few months or even just suppressive. Just like we do for patients who have been transplanted and have bad immunosuppression, or who have had recurrent cellulitis, we use prophylactic antibiotics to suppress things a lot of times. Another good example is ocular rosacea; those patients are often on minocycline or doxycycline for life. So not every patient needs that, but if it has a huge positive impact on quality of life, I think with longer-term suppressive antibiotics like that, the benefits can outweigh the drawbacks sometimes.

For female patients, combination oral contraceptive pills and things like spironolactone, which block how hormones affect follicles, just like for acne, can also be very helpful sometimes. So those are often longer-term ways to try to control things. And then metformin has a little bit of evidence too, probably because a lot of these patients have PCOS and/or impaired fasting glucose at least, and many of them are diabetic. So metformin seems to play a positive role for some; it can just be harder to tolerate, with the stomach upset sometimes. So those are all relatively straightforward ways to manage things.

Now, even medicines like adalimumab are not that much riskier, I feel, than a lot of the drugs that most primary care doctors use. And I know there’s a big problem with dermatologists not always being accessible to patients. So I often say that if a primary care doctor feels comfortable using those medicines, I don’t feel like it’s off-limits when a patient really needs it, because really, it’s a TB test once a year, and if they have signs of infection, you tell them to stop and hold a dose. For primary care physicians prescribing short-acting insulin, there are way more patients who end up in the hospital having bad side effects from something like that than from something like adalimumab. So again, I think when the situation calls for it, it takes a little reading and feeling confident about it, but I think sometimes you do what you’ve got to do for the patient.

Kevin Pho: And in what kind of scenario should we consider referral to a dermatologist?

Christopher Sayed: Yeah, I think if patients already have a fair bit of scarring and tunneling, that by itself is a decent indication, because that patient qualifies for a biologic therapy most of the time, whether it’s adalimumab or off-label things like infliximab or secukinumab, which will likely be approved soon. So that’s where I’m really thinking about how to slow the disease down and not have to play catch-up because they’ve all of a sudden got twice the amount of scarring and tunneling from waiting another year or two. So that by itself makes it a very reasonable referral. Or if some of those initial management steps just haven’t calmed things down well enough, that can also be a reasonable time to go ahead and send them on, if it feels like you’re at the limits of what you feel comfortable doing, basically.

But yeah, I’d much rather get a patient early and try to stop them from progressing as much, than have to play catch-up when they’ve already had all the scarring and tunneling, and I know they’re going to need a bunch of surgery at that point. My goal with medicine and early intervention is to limit how much surgery the patients need, because for patients who get stuck doing five, 10, or 15 surgical procedures over time, that’s just as bad as having a chronic disease. So I’m trying to limit that whenever I can.

Kevin Pho: So you’re a dermatologist who focuses on HS. How common actually is that?

Christopher Sayed: So that’s been up for debate some. There are old reports that put it as high as 4 percent, but those were very biased populations that were being looked at. Some of the best studies, if you just look at ICD-10 codes in systems, put it at about one in a thousand patients, which is not uncommon at all. A lot of the studies that have done survey-based studies, asking patients across large populations just, “Do you have recurrent abscesses or nodules in places like the underarm and groin?”, put it as high as 1 percent in some studies, or 1.2 percent even, kind of looking at different methods of really assessing how much it’s actually out there, because it gets misdiagnosed, and so the ICD codes don’t exist in the system.

And that’s across Europe and North America, and there have been some similar studies done now in a couple of other countries, like in Africa and in South America, where it’s probably not that dissimilar, actually. And so yeah, if you’re talking about a disease that’s one in a hundred to one in a thousand people, that is not a rare condition, the way that it used to be thought of 20 years ago, when I think we just weren’t recognizing it.

Kevin Pho: And my final question: What are some of your take-home messages that you want to leave with the KevinMD audience?

Christopher Sayed: Yeah, I think my biggest one is that the misdiagnosis that happens, and that lack of counseling early for patients, is harmful, because the longer patients go without diagnosis, the worse they are by the time they actually get to good management that slows their disease down. And so again, it’s simple diagnostic criteria: Recurrent abscesses and nodules in typical locations like the underarm, groin, and buttocks are HS until proven otherwise, right? So that should come to your mind first and foremost. There’s no complicated diagnostic workup to be done beyond that to make that diagnosis, start to mention it to a patient, and try to set them on the right path. So that’s my number one take-home point.

Kevin Pho: Christopher, thank you so much for sharing your time and insight, and thanks again for being on the show.

Christopher Sayed: Happy to do it. Thanks so much for having me and for bringing awareness to HS. It needs it.