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Finding a hidradenitis suppurativa treatment that works can be frustrating and difficult, especially with certain symptoms like intense pain.
Hidradenitis suppurativa (HS) pain can severely impact your day to day quality of life — I speak from experience here!
When I first discovered a swollen, painful lump in my armpit, I panicked, and immediately worried about getting checked for breast cancer. Fortunately, the lump wasn’t cancer – it was hidradenitis suppurativa.
For me, laser hair removal was the key to stopping hidradenitis suppurativa symptoms in their tracks, but that’s not the case for everyone. Plus, laser hair removal isn’t always a permanent solution.
Because I personally know how awful this skin condition can be, I want to share more on what causes hidradenitis suppurativa pain, how the immune system and inflammation play a role here, as well as sharing some hidradenitis suppurative home remedies and other conventional treatment options.
Dr. Steven Daveluy is back to share more on HS! He is an associate professor and program director at Wayne State University in Detroit, Michigan, and holds special interests in teledermatology, noninvasive skin imaging, skin of color, integrative dermatology, and complex medical dermatology, including hidradenitis suppurativa (HS).
Dr. Daveluy serves on the board of the Hidradenitis Suppurativa Foundation. He serves on the editorial board for the JAAD and is building a growing body of publications of his own.
Let’s dive into this really important topic!
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In This Episode:
- What causes hidradenitis suppurativa (HS) pain?
- Hidradenitis suppurativa tunnels
- Immune response, cytokines + hidradenitis suppurativa symptoms
- New research bacteria found in the fluid + pus from HS lesions
- Stages of HS (hidradenitis suppurativa)
- Can HS surgery help with pain?
- Is laser hair removal a permanent hidradenitis suppurativa treatment?
- Hidradenitis suppurativa home remedies
- How to get help with pain management because of HS
- Medication options for hidradenitis suppurativa treatment
Quotes
“Even where you don't have lesions, your skin microbiome is still different than someone who doesn't have HS, which then sort of talks to this picture of HS isn't just something in your hair follicles, it's something that affects your whole body. And things are different in your gut, in your skin, in the skin that doesn't even have HS lesions. Things are just really out of balance.”
“…It's not to say that stage one can't be severely painful, but as a general trend, the more tissue damage you have, the more risk you have for the pain becoming more severe.”
Links
Find Dr. Daveluy on Instagram | Twitter
Healthy Skin Show ep. 103: Hidradenitis Suppurativa: The Tip That Stopped My Flares
338: How to Stop The Pain of HS: Hidradenitis Suppurativa Treatment + Remedies w/ Dr. Steven Daveluy {FULL TRANSCRIPT}
Jennifer Fugo (00:07.155)
I'm so glad to have you back, Dr. Daveluy. Welcome back to the show!
Steve Daveluy (00:12.062)
Thanks for having me back, Jennifer. Great to be here.
Jennifer Fugo (00:14.983)
I know we always have great conversations about hidradenitis suppurativa (HS), which sounds like a mouthful for somebody who's never heard of it. So by the way, if you don't know what it is, we might refer to it as HS because it's just simpler, so now at least you're in the know. One reason I wanted to talk to you today is because I feel like from my own experience with hidradenitis suppurativa symptoms, now granted I didn't have a very severe, more advanced case of HS, but I did have, for those of you who don't know, I did have HS in my armpits back in like 2010. And one of the biggest frustrations for me was how painful, when I would have a flare up, like how much pain and discomfort I would be in, it made it difficult to move, and whatnot. So I thought that would be a good place to start like, what is going on in HS that triggers so much pain for people?
Steve Daveluy (01:10.798)
Great question. And I'm glad we're talking about pain, because you're right, pain is the number one symptom in hidradenitis suppurativa. It can be horribly severe. And the pain, interestingly, they've done some studies on quality of life and different issues. The pain level that patients experience is a better predictor of their quality of life impact than the severity of the disease, which to your point speaks to that you can have mild disease and it can still be very painful. And that's hard because sometimes if someone knows about your disease, even a loved one, and they look and they're like, well, it doesn't look that bad, but you're telling them, well, you can't feel what it's like on the inside. That can be really stressful and invalidating in a lot of ways when people are going, oh, you look fine, what are you talking about?
Jennifer Fugo (01:59.567)
I was just going to say too, I would imagine the more advanced the condition becomes for some individuals, and so it develops hidradenitis suppurativa tunnels under the skin. Does that also cause pain even beyond or outside of a flare?
Steve Daveluy (02:21.378)
Definitely. So then in one of the studies, they found just over 60% of people said that their pain in the last week was at least a five, and only 9% of people who responded to the survey said they had no pain in the last week. And you're right, there's flare-ups of really bad pain, and then there's kind of this baseline pain. And what's really one of the sad things with it is that sometimes people just get so used to living with that pain that then, when we do get the disease under control with effective hidradenitis suppurativa treatment, all of a sudden they realize they've been living with this constant pain and it's gone. And they had just sort of adapted to the hidradenitis suppurativa pain. You know, like, oh, every day it's a three out of 10, but when it flares up, it goes up to like an eight, nine, 10 out of 10. So they just are living with this sort of constant gnawing and aching pain.
Jennifer Fugo (03:08.371)
And also too, I will share that living in constant pain is exhausting. It's debilitating. It makes you not want to do pretty much anything or show up in life to anything. So I could imagine that if I had a pretty advanced, and then there are, you know, individuals who are on social media, sharing their experience living with very advanced forms of HS (hidradenitis suppurativa), that must be extremely exhausting. I mean, aside from all the other things you have to go through, which is what we are obviously going to talk about today, some of the reasons that are causing some of this pain and the reaction within the body.
With this being said, and I don't think we touched on this the last time, and I think this is an important conversation to be had because as we all, well, as you and I know, HS is starting to be more discussed. And part of it is because now we're having more hidradenitis suppurativa treatment available, and we'll talk about some of those things later on. But I like to understand, is there a sort of immune response going on under the surface? I love to dig into that. With HS (hidradenitis suppurativa), do we have research to understand some of the immune components or cytokine components that could possibly drive some of these hidradenitis suppurativa symptoms?
Steve Daveluy (04:31.062)
I'm very happy to report that we do. Having said that, we're still learning a lot and we're still figuring out about HS and better hidradenitis suppurativa medication treatments. And HS is so complicated, because like you said, there's sort of early disease and what are the inflammatory cytokines? What's the immune system doing? Then there's later disease. So we're really learning and studying, but we have learned some things. And like you mentioned, that's led us to have some hidradenitis suppurativa treatment. Because if we know what parts of the immune system are out of balance, then sometimes you can target those with a treatment for hidradenitis suppurativa.
So one that we know is TNF or tumor necrosis factor alpha. And we have medications that can block it. So the first hidradenitis suppurativa medication approved by the FDA is adalimumab, which blocks TNF-alpha. And we know that those levels are elevated in the blood and in the skin. So if you sample the skin where someone has active HS, the levels are higher. So we know that there's something going on in the skin that the immune system is releasing these cytokines and causing this inflammation.
Then more recently we've learned about IL-17, which is one that we know from psoriasis as well. And we've learned that that's elevated in the tissue and in the blood of patients with HS (hidradenitis suppurativa). And then we're learning about these other things and other pathways of the immune system. And there's kind of this interplay, we think, between bacteria as well that might be sort of stimulating some of these immune reactions, because some of these pathways are used to fight bacteria. And we know HS isn't an infection, it's not contagious, you can't spread it, but the bacteria that are in the lesions and in the hidradenitis suppurativa tunnels probably play some role in triggering some of that inflammation.
Jennifer Fugo (06:05.355)
So that was one question I have always wondered because, so for those of you who've had HS, you know that sometimes you can end up with this sort of, I don't know, I would get this like leak and drain from the hidradenitis suppurativa lesion, and it was gross. I'm gonna be honest, it was gross, I thought it was gross, and it was extremely painful, but it felt better the more I could get the fluid to drain out because the more that was packed in there, the more uncomfortable it would become. And I was always wondering, and even to this day, I'm like, has anybody ever looked to see what's in that fluid that's coming out of these lesions?
Steve Daveluy (06:49.698)
Some very, very smart people have done some great research on hidradenitis suppurativa lesions. And it's another area where we're learning more and more. And it's really interesting because they had to even sort of develop some new techniques for detecting the bacteria because some of our older ways to do it don't always pick up everything that could be growing because, you know, there's all kinds of bacteria. So sometimes when we do a culture, it might inhibit the growth of things that we don't think are relevant. So there are some newer technologies to actually pick up the DNA or the RNA that's in these bacteria and detect them. And they have found that within the lesions, there are some bacteria that we don't usually see on normal skin or in normal hair follicles because we think a lot of times these lesions sort of start out in the hair follicle, then it sort of ruptures and forms these hidradenitis suppurativa tunnels or these pockets.
They also found that in the skin that's adjacent to the hidradenitis suppurativa (HS) lesions that looks normal, but it's adjacent in a patient with HS, the bacteria on top of the skin is not the same as skin that's from a totally different person who doesn't have HS. So they sort of like don't have the same bacteria on the skin or in the lesions. And we're trying to figure out what the role is there. You know, is it, it's like a chicken and the egg. Did the inflammation create an environment where the different bacteria grew? Or did the different bacteria start growing, and that's triggering the inflammation, or is a little bit of both, a little bit of column A, a little bit of column B? And then we're even learning that the gut bacteria, the microbiome of the gut can be different in HS. And I know you know that a lot of times bacteria in the gut drive all kinds of inflammation. So then that raises this question of, well, did the bacteria in the gut then alter the bacteria in my hair follicles and on my skin, or did they trigger an immune reaction? So it's really complicated, but I'm very happy that some very smart people are trying to study it and learn more.
Jennifer Fugo (08:42.255)
Yeah. So just to be very clear, it sounds like what you are saying is that the skin microbiome in the clear or “healthy skin”, not where the lesions are, is different than someone who doesn't have HS (hidradenitis suppurativa). So it's not looking like this healthier, more quote-unquote balanced profile that you would normally see.
Steve Daveluy (09:11.27)
Exactly, yeah. And we call it the non-lesional skin. So even where you don't have hidradenitis suppurativa boils or lesions, your skin microbiome is still different than someone who doesn't have HS, which then sort of talks to this picture of HS isn't just something in your hair follicles, it's something that affects your whole body. And things are different in your gut, in your skin, in the skin that doesn't even have HS lesions. Things are just really out of balance.
Jennifer Fugo (09:37.194)
Wow, that is fascinating. That's like an exciting new territory to be going into to start looking at things. In our last interview, we discussed the anti-Saccharomyces cerevisiae antibody that is a blood test that I know that you are very familiar with, it can really look like some of these individuals with HS have this, they're positive for this antibody.
And I always find it fascinating, some of my clients with IBD are also positive that blood marker as well. And so that was sort of like a red flag moment, like, huh, I wonder if there's a gut component. And then with the yeast, like some individuals, as we discussed, are reactive to yeast in the diet. And it makes me wonder, like, is it possible there's a yeast component? Who knows? But this is cool. This is really, really cool to be here.
So it sounds like with all of this talk about doing research, looking into actual causes of what's going on, it doesn't, though, address the pain that people who have hidradenitis suppurativa boils right now are actually dealing with. So if you have HS (hidradenitis suppurativa), and so there's three stages, correct, of the disease?
Steve Daveluy (10:55.838)
Right, yep.
Jennifer Fugo (10:57.703)
Is there some like, can it change? Does the pain change depending on what stage you're in? And how does the stage connect to potential pain levels?
Steve Daveluy (11:10.254)
Pain levels often do sort of increase as your stage increases because the staging system, basically stage one is you get a spot here or there, it's not really leaving scars yet, they just kind of come and go, usually a little boil or a little inflamed nodule, like a little hard pimple or big pimple. And then when you move into stage two, you start to see some scarring and some hidradenitis suppurativa tunnels forming. And then stage three is where it basically takes over one whole section of your skin, like your whole right armpit is taken over with hidradenitis suppurativa (HS) between tunnels and scars and lesions.
And so even talking about the stages, you can tell it's tissue damage that's happening, that HS is actually damaging your skin and the layers under your skin and forming these hidradenitis suppurativa tunnels and destroying things. So generally the pain increases as you go from one stage to the next. And plus with that scarring, it can sort of trap lesions underneath. So you get this pain where, like we mentioned earlier, you can't really see too much on the surface, but you're having a flare up under there. It's just so scarred on top. And like I said earlier, it's not to say that stage one can't be severely painful, but as a general trend, the more tissue damage you have, the more risk you have for the pain becoming more severe.
Jennifer Fugo (12:22.839)
Yeah. And when people have surgery, is it typically at the more severe stages or advanced stages of hidradenitis suppurativa (HS)? And does that also alleviate some of the pain? I'm not necessarily saying everyone should go out and have surgery. That's not my point. But I do want to hold space for those who are possibly in this place where they might be considering this or this has been an option presented. How does surgery play into hidradenitis suppurativa pain?
Steve Daveluy (12:54.018)
That's a very good question. And I'm happy to say that a lot of times surgery can help alleviate some of the pain. So I don't go to the operating room, but I do surgeries in the office. I have a CO2 laser and we do some. We do a lot of surgery for hidradenitis suppurativa tunnels, especially if we sort of have optimized everything else, between your medications, your diet, everything else is doing pretty good, but you still have this painful draining hidradenitis suppurativa tunnel or this spot that just won't go away, then we can do some surgery on those spots. Or even if it's like a larger area, you might need surgery on the whole area.
What's really interesting is, of course, whenever you're gonna have a surgery, you ask like, okay, what's the pain gonna be like afterward? What's my recovery gonna be like? And when they ask that of HS patients undergoing surgery, the majority say the pain after surgery, even the day after, is less than the HS pain. So they say, I can get by. I've been dealing with this HS pain, now that I've had the surgery, my pain is even less. And that's, you know, it can vary, like you said, for some people sometimes those first few days can be kind of rough, especially changing the bandages. But most people who have surgery, when they qualify for it and it's a good option for them, once you get one, if you have more lesions, you'll want more surgery, because it does provide this lasting relief, and it leaves a scar, but now it's a scar that's not painful, not draining, not swelling up. It's just a normal flat scar.
Jennifer Fugo (14:17.743)
And so when you have surgery, are you removing the follicle? You don't have to get into gory details, but what exactly is being removed?
Steve Daveluy (14:34.11)
So a lot of times with the surgery, it'll be, there's a few different types. So one is called deroofing, where we actually take one of the hidradenitis suppurativa tunnels or one of the pockets and take the roof off and then usually scrape the lining a little bit and then just let the skin heal from the bottom up. And then there's more extensive surgery where you do sort of remove all of the skin layers. So the hair follicles go with it, any sweat glands that were there. There's sort of this misconception that doctors even often sort of still say that they shouldn't, I'm going to remove your sweat glands and that'll make it better. And I think I think the confusion comes over the fact that it shows up in areas where we have sweat glands like our armpits and our groin. But we've really learned that it's more about the hair follicles. And what's really interesting is that laser hair removal can work, right? As you know very well.
Jennifer Fugo (15:22.117)
Yes.
Steve Daveluy (15:23.014)
And so we think that getting rid of the hair follicles really can be helpful for some patients because then you don't have sort of that original place for the HS (hidradenitis suppurativa) to start and to flare up. So in the surgeries, the hair follicles do kind of get removed with it, but a lot of times we're targeting the hidradenitis suppurativa tunnel or the pocket and trying to kind of open or remove that pocket so that things can kind of heal over with a normal scar.
Jennifer Fugo (15:47.275)
Yeah, and I agree and I'll actually link up into the notes my episode where I talked about my experience with a laser hair removal. It's not, I wouldn't say it's pain-free, but considering like you said, how painful a flare is, I was like, just do it, just do it. I'll go through it, it's fine. It feels like a big, like a rubber band being snapped on the skin, but it was so, every single time I had it done, hidradenitis suppurativa flare ups were progressively less angry. They lasted for a shorter period of time. And it got to a point where on rare occasion now, and I'm like, this is now like 13 years ago, I'll occasionally get what feels like a little bit of almost like a pinprick sometimes in that area, because that was always the first for me. I don't know if that's a universal feeling, but it would feel like I was being stabbed with a little pin. And that was how in my armpit area, that was how I knew that a flare was coming on.
Before we started talking, you mentioned a hidradenitis suppurativa patient who did the laser hair removal, but it did start after several years to come back. So it's possible that you might need to revisit laser hair removal if you had it prior?
Steve Daveluy (17:11.978)
Yeah, yeah, that's a really good point. For some people, it's sort of a permanent solution. And it's funny because years and years ago, we used to say that laser hair removal was permanent. And now we call it semi-permanent. Because for some people, some of the hairs eventually do sort of recover and start growing again. So I had a patient who responded wonderfully to laser hair removal, and he was really happy because a lot of other things did not work well for him. And then, he got better, didn't see him for years. It was like six or seven years. And then he came back and he said, hey, I'm starting to get some hairs back and I'm starting to get a little bit of hidradenitis suppurativa (HS) flare-ups. So we did it again, another course of a few months of laser hair removal. And I have, knock on wood, I have not seen him again in a long time, but I know he'll come back if he flares up.
And like with everything with HS, results may vary. It's one of those diseases where we need to learn more about what's gonna work for one person and another. So for some people laser hair removal works wonderfully, for other people they don't get such a great result, but that's kinda true of all of our hidradenitis suppurativa treatment options. And I'm hoping as we learn more about the disease and what might be driving it for one person or another, we'll be able to sort of tailor things a little bit better. Right now it's a lot of sort of trialing things and figuring out what's gonna work for people. So you gotta somewhat be willing to be open, to try a few different things and see what's gonna work and always be optimistic that something's gonna work for you, but also just remember that it might not and then you just move on to the next option, or if it partially works, you add something else to the regimen.
Jennifer Fugo (18:44.935)
I love that. I think that's a good approach and mindset to go into this with because I feel like many skin conditions are like that as well. There's no, as much as we would love to say, this one thing will fix it all, like it doesn't exist. That's not realistic. And so unfortunately, there is a trial and error component to it. And sometimes as you shared an additive piece that maybe this helps 30%, this adds on another 15%. It gets you, those things add together to help improve things. So for somebody who's dealing with HS, depending, and I don't know if this varies by stage that you're in, what are some hidradenitis suppurativa remedies for pain if, say, they're in a flare-up, especially?
Steve Daveluy (19:37.454)
There are some things you can do, and a lot of this we've actually learned from our patients. So some of this has been published in the research where they'll do studies and send out a survey to patients and say, you know, like, what have you found is helpful? And the good news is there are some home hidradenitis suppurativa remedies that can help.
The number one thing that people reported to be helpful is warm compresses, where you're warming up a moist towel, or you can even, if you want it to kind of last longer, you can hard boil an egg and then wrap it in a towel and it holds heat for a while and will stay warm. And we sort of know that it's something you can do if you have, you know, a boil, to kind of warm things up a little bit, soften things up. I mean, heat generally is kind of nice for pain. Fewer people said that ice packs were helpful, but still quite a few people said ice can help, and you can always try alternating heat and ice to see what works better. Over-the-counter pain relievers like your ibuprofen, your acetaminophen, as long as you don't have any issues with taking those, they can be helpful. And of course, a lot of people reach for those because we have them at home, you take it if you have a headache or you've sprained your ankle. Some people found that Epsom salt baths could give some relief. And we don't really know why, but it's a simple thing as long as you have access to a bathtub and it's not too hard to soak the area, or if you want to just fill the whole bathtub.
And then depending where you live and what the availability is some patients have reported really good results with CBD, which can be cream, gummies, pills, and some people even THC if marijuana is legal in your state. And I know sometimes people have, you know, strong opinions on marijuana, but we also know that opiates can be a problem and sometimes you need it, right? Like sometimes when the pain is so severe, you need a prescription pain medication. But I've had a lot of patients, since things have gotten more relaxed with medical marijuana and now recreational in Michigan, who've been able to avoid opiates through using THC or CBD. And you always want to make sure you do it safely, let your doctor know, don't drive, treat it like the substance that it is, but that's been able to give some people some relief too.
Steve Daveluy (21:48.478)
And then menthol. A lot of patients have reported that creams that contain menthol, because it has sort of that cooling effect. And then there's another cream called diclofenac, which is almost like a derivative of aspirin in a cream. And so it's marketed more for like arthritis, but it can actually help the pain too. So some patients find that's helpful to kind of rub into the areas.
Jennifer Fugo (22:09.199)
Have you ever, and this just came to mind as you were talking, has anyone ever mentioned too about maybe using like topical lidocaine or, because I know like for pain, my mom has like a pain patch for her back, has anyone ever found anything like that helpful?
Steve Daveluy (22:25.366)
Yeah, I'm glad you brought it up because a lot of patients do find that the lidocaine can be really helpful. The patches are a little bit challenging with HS because it has the drain.
Jennifer Fugo (22:35.071)
I could understand that. Good point, good point.
Steve Daveluy (22:54.41)
Yeah. But it also comes as creams and gels and they usually do give some pain relief. The challenge is it usually lasts a few hours, but then you can reapply it, and as long as you don't get any kind of rash or irritation from it, totally safe to use and yeah, it's very useful, it's widely available. Like you go to any drugstore or pharmacy, you're going to be able to find some lidocaine topical.
Jennifer Fugo (22:59.223)
That's good to know because, you know, like you said, pain can be pretty severe, especially when you're in a flare-up. And if also, too, someone has difficulty getting back in to see their doctor or you’re traveling, I mean, you never know when an HS flare up will happen. And typically it happens at the most inconvenient times. Mine happened right before I got married and I thought that I had breast cancer, because it was this huge lump in my armpit that was painful that suddenly sprung up and lo and behold, that was my introduction to HS. But, you know, you just don't know, and knowing some of these things can be helpful. And so you were saying there was this was like a survey, is this through the HS organization? I know that you're involved with the, there's like a national kind of advocacy body, I believe.
Steve Daveluy (23:52.042)
Right, yeah, there's the HS Foundation. So this survey wasn't officially by the foundation, but it was done by one of the board members who's an HS expert and studies HS and was really diving into, you know, what can we do for pain? And another one of our board members, Lauren Orenstein, who's at Emory, she is like the queen of HS pain research. She really recognized we need to get better at this. We need more research on what to do about pain. So she's done some really great work that's helped a lot.
And pain, pain is really complicated. At first glance you think, oh, I know what pain is, but she really helped to categorize different types of pain in HS. So these are kind of like big complicated terms, but there's one called nociceptive, and that's like that aching and gnawing, and it's when your tissue's being damaged and it releases those things that sort of spark pain and send signals to your nerves. And then there's neuropathic. And the neuropathic, the neuro comes from nerves. So that's more of like a burning sensation. And that's where the nerves themselves have kind of been so messed up from having all these signals that they just start to sort of feel pain. So one of the classic neuropathic pains is diabetic neuropathy, where people have these burning feet because their diabetes has damaged their nerves. Well, sometimes in HS, these nerves get damaged. So you have this kind of burning, lingering pain that even between flares, you're like, it's still painful, it hurts.
And then there's this third kind that luckily is a little bit more rare, but it's called neuroplastic. And that's where if your brain keeps getting these signals all the time for pain, pain, pain, it sort of adjusts in a bad way so that it starts to think a lot of things feel like pain. So gentle touch could feel like pain or itch can start to feel like pain. And it's just sort of like the wires have gotten crossed and more stuff feels like pain than should feel like pain.
It's nice that she categorized these types of pain because some hidradenitis suppurativa treatment can be better for one type of pain compared to a different type of pain. Like some of the treatments we use for diabetic neuropathy, like gabapentin or duloxetine, can help with that burning neuropathic pain. Whereas sometimes other things can help with the nociceptive pain, but sometimes those ones can too. So I'm really grateful for her for leading the field so that we can sort of have more information to equip ourselves and to ask our patients, you know, can you describe your pain for me? Is it this like aching and gnawing or is it more of a burning sensation? And that can kind of help me to then say, all right, well, maybe we're gonna use this medication or try this hidradenitis suppurativa treatment approach.
Jennifer Fugo (26:30.787)
Is that something, as you're talking, is that something that perhaps a patient listening to this who has HS perhaps should pay attention to, the type of pain, so that they can relay that to their doctor when they see them the next time?
Steve Daveluy (26:51.034)
Absolutely, because like I mentioned earlier, most of us just think pain is pain. And then when someone asks you to describe your pain, you can start to have those, you know, while it is like an aching that I feel, it's a sharp pain, it's a dull pain, it's a burning sensation. And like you mentioned, if you can kind of go into the doctor and say, between my flare-ups, my pain is at, you know, a 2 out of 10 and it's a burning sensation where the tissue just feels irritated. And then when I have a flare-up, it's more of a sharp pain and it goes up to an 8. it can help your doctor to then say, all right, well, I think for your kind of burning everyday pain, we need to use one kind of medication. And then for your flare ups, we might have to do something else.
And one of the things I sort of forgot to mention at the beginning, and kind of goes without saying, but we should still say it, is that the main thing, the number one thing to reduce the pain is to try to get the disease under control. Try to get rid of that inflammation, that damaging tissue and damaging nerves. But recognizing that might take some time and it might not be always possible, it's important for us to address the pain as well. And it's really validating for patients, for any doctors who are listening out there, ask patients about their pain. I know it makes us uncomfortable because if you ask about pain, then you've got to do something about it. But even just asking about it acknowledges and validates people's experience to say, yes, I know that you're feeling pain and I want to make it better. And a lot of patients now recognize that we're not trying to just throw opiates at everything. So they know that even if we talk about my pain and we try to get it under control, I recognize that you're not gonna give me things that are too dangerous or something that I need to worry about hiding my pain because you're gonna get me hooked on opiates. So it's a much better place to be talking about pain than maybe we were 10 years ago.
Jennifer Fugo (28:39.319)
Yeah, and now, and I do want to touch on this as we wrap up, we have medications that are being approved. You touched on them before like the IL-17 blockers, which, as you were talking about the tumor necrosis factor alpha and IL-17, I'm like, wow, these are very similar to psoriasis. Isn't it so interesting, everyone, how sometimes we can have the same exact cytokines as another skin condition that's totally something else? And yet it shows up and manifests in a totally different way and somebody else's body. But how helpful do you think the biologics could be also in, like, can they reverse the disease or do they arrest it, from your experience with them or what you've read? I mean, I imagine if there's tissue damage, a biologic drug's not going to fix that.
Steve Daveluy (29:35.966)
Right. Yeah, you're right. The main goal of hidradenitis suppurativa treatment is to arrest the progression and reduce inflammation. I will say sometimes some of the areas do sort of heal a little bit once you get that inflammation under control, where, you know, some of the lesions, the medications aren't going to touch them and you're probably going to need surgery, it's scarred, it's formed a tunnel. But sometimes if it's earlier in the process for that lesion, then shutting down the inflammation sort of lets the body heal it up. But that's a big thing we try to do with all our medications, including the biologics, to sort of arrest the process. And then we can deal with the damage that's been done and does it need surgery. And the biologics can work really well.
So like we mentioned earlier with HS hidradenitis suppurativa treatment, it's a little variable in terms of how well something's gonna work for you as an individual, but for some people, they get an amazing response to either adalimumab or secukinumab, blocking IL-17 or TNF, and they do really well and they're very happy. For other people, it works kind of in the middle. And it's like you were talking about earlier, then we might add some things on. So it might be part of a regimen where it got you 50% better. Now let's add some other things on to get you the rest of the way. And we're very lucky in that the hidradenitis suppurativa treatment options, by and large, most of them can be combined. They don't interact with each other. They don't cause extra side effects when you combine them. So that's one of the blessings, it is easy to kind of build a regimen.
And then some people don't respond so well to one biologic treatment for hidradenitis suppurativa, which is why I'm so grateful that we're getting more coming to the market. There's a lot being studied, and they're targeting all kinds of different areas of HS. There's even one being studied right now that targets something called IL-31. And instead of looking at the inflammatory lesions, the red painful spots, they're actually looking at reducing the number of draining tunnels. And so it kind of blocks a different part of the immune system that's probably involved with those hidradenitis suppurativa tunnels draining.
So it's kind of interesting to even see new targets coming out and new things that I think will just keep adding to our arsenal to kind of combat this HS. And for the hidradenitis suppurativa patients out there, there are going to be some drugs that their first indication is going to be HS. Because I know it's great to find out a psoriasis medication can work for you too, but it's going to feel really good when there's something that was designed just for your disease. I mean, I'm not knocking the ones that are from psoriasis and work for HS because it's still great when they work, but it's really a good feeling to go, hey, this was made for my disease.
Jennifer Fugo (32:05.583)
Yeah. And I think the other piece too is always to remember that, and this is something that I think people get overwhelmed with, sometimes you need hidradenitis suppurativa treatment meds. It's okay. I don't think that there should be all this judgment. There's a lot of judgment online of what people do. I think it's always important, I always try to remind my clients and anyone that I speak to that it's your body. No one knows the level of suffering and pain that you are experiencing on a daily basis, be it physical or mental or emotional, from your condition. Sometimes it's all three. And whatever you need to do to get back to a better quality of life can really drastically impact so many other areas of your daily life. And you can do the diet stuff. You can do some of the supplements. You can do gut work. You can do other things at the same time. You don't have to feel like it's one or the other camp. Like you shared, many of these hidradenitis suppurativa treatment and remedies can be done in conjunction with one another, and they don't actually work against one another, which is actually really nice. So I just always like to remind people that really there's a lot more options. It's not just one thing, because I don't like feeling stuck. I like knowing I have options.
Steve Daveluy (33:23.146)
Yes, get the best of both worlds. Don't knock one world and block it out. Get the best of both, you know? Get everything that's available to you as an option and consider them all. Yeah, I couldn't agree more. It's the best when you can sort of integrate dietary things, lifestyle things, supplements, and the medications, and find what's best for you. Find what works for you and brings you back into balance and makes you feel good and helps you.
Jennifer Fugo (33:49.356)
Yeah. And you take patients, right, Dr. Daveluy? This is like your, I know you see other conditions, but this is like really your main area of focus, correct, HS?
Steve Daveluy (33:53.116)
I do, yes. It is, it is. Yeah. I've, I've spent a lot of time and energy on HS and like you said, I'm so glad it's getting more attention and more awareness because hidradenitis suppurativa awareness is a big problem. We're kind of spoiled here in Detroit because I have my HS center and there's another one down the road at Henry Ford. I'm at Wayne State University. So it's a good place to be if you have HS and are seeking different hidradenitis suppurativa treatment options because you've got some great doctors who are dedicated to HS here in Detroit. And we're trying to through the HS foundation, get doctors across the country because we want everybody to have an HS expert nearby.
Jennifer Fugo (34:34.627)
Yeah, I think that would be absolutely wonderful because I would also love to not be the person going, that sounds like HS, did you ask your doctor if that's HS? Because as you shared in our previous episode, it is for some reason, it is the thing that most doctors, not all, but a lot, do not think of HS and once you know it, you can spot it.
Steve Daveluy (35:02.214)
It's not a hard diagnosis. Someone tells you, I've got boils in my armpit and my groin. You go, you've got HS. I'll look and I'll confirm. But yeah, it's not hard. So it's just that awareness and sort of making people aware that it exists. So we're trying to reach people in medical school. We're trying to reach people out in practice and say, hey, keep it on your radar. If you're not seeing HS, HS is probably seeing you.
Jennifer Fugo (35:25.911)
That is probably true. Well, I just want to thank you so much for being here again. I always love when you swing by and share your wisdom about HS with everyone. And I look forward to having you back again sometime.
Steve Daveluy (35:39.574)
Thanks so much for having me. I look forward to it too.
