Robert G. Micheletti, MD
: In addition to the anti-TNF agents, there are some other biologics that are of interest. So, when we talk about the pathogenesis, I mentioned that we see upregulation not only of TNF, but also of IL-23, Th17, and interleukin-1beta. So, for that reason, ustekinumab, anakinra, and other similar agents have been looked at for treating hidradenitis. And, I think it is an important area because there are so many patients, again, 1% of the population, roughly speaking. That’s a lot of patients who are dealing with this. Not every patient is going to have a suitable agent that’s available. And so, it is important to be thinking about other drugs and other options for patients who, say, fail a TNF inhibitor. So, with ustekinumab, there have been some. There’s actually one recent study that was looking at that. It was an open-label study, and it did show efficacy in that population. With anakinra, also, there were some retrospective data from an open-label study from a few years ago. And then, more recently there was actually a placebo-controlled study that showed some efficacy.
I have used anakinra before for really severe, almost autoinflammatory syndrome–like, patients who failed TNF inhibitors. I’ve had some success. I think those patients are so severe sometimes, that maybe nothing works all the way. But, it is something that is worth thinking about for the patient who is off the charts, maybe has other inflammatory stuff going on, and doesn’t respond to a TNF inhibitor for whatever reason, or doesn’t tolerate a TNF inhibitor for whatever reason. And so, of course, those things are difficult to get approved and certainly happen on a case-by-case basis.
But, it’s really great to see these studies moving forward and to have more things available, as with psoriasis; a proliferation, hopefully, of drugs that can really impact and modify the disease that is so debilitating for many patients when we’re talking about hidradenitis. Having more drugs would certainly be a good thing. More options for these patients would be a good thing, and so it’s good to see that.
I think it’s very heartening to see studies coming out about therapy for hidradenitis and ongoing studies looking at new agents, as well as a growing body of literature about comorbidities related to hidradenitis. And what that all shows is that there’s interest in this disease, and, in many ways, it’s been an orphan disease. It’s a disease that goes undiagnosed for 7 years. People don’t talk about it. People don’t know what it is. People in the same family might have it and they don’t talk to each other about it because it’s stigmatizing, it’s difficult to deal with, and difficult to manage. And so, it’s very heartening to see now medications and options for patients that really can make an impact.
Before, hidradenitis was one of those conditions where nobody would advertise that they see hidradenitis patients. Everybody is sort of happy to refer because it’s difficult to treat. I would say that for providers out there seeing patients, it’s something that actually can be tremendously rewarding to have a patient who has debilitating quality of life, limiting disease, to get them started on an appropriate therapy, matched to the severity of their condition, and then to see them improve over 3 months, 6 months, a year. That is a tremendous experience to see that happening. And I think patients are very grateful for that. And they’re grateful even just to talk about the condition, to have the quality-of-life issues and the psychosocial issues acknowledged out loud by their provider. These things are tremendously beneficial, I think, from a therapeutic standpoint even beyond what we’re doing medically.
The other thing that’s important, I think, is understanding that for a disease that does often go undiagnosed, there’s a lot of information out there that patients are getting, not from their provider but from the Internet, from message boards, and this is of variable quality. People say all sorts of things out there. Some of it’s right, some of it’s wrong, but you have to be prepared to answer questions, and you have to understand where that’s coming from. So, if a patient has been bounced around the healthcare system, they may not always trust what they’re hearing from their doctor. And so, I tend to take the approach that if somebody wants to try a particular diet or particular thing that they’ve heard about, as long as it’s healthy and safe, I’m okay with that. I want to support that. I want to support the concept of a patient knowing that there are others like them out there. The Hidradenitis Suppurativa Foundation is working on making local support groups more accessible. Certainly, support groups online are an avenue for patients to hear more. Again, for the provider to tell a patient you’re not alone. These are issues that I know you’re dealing with. Maybe psychological help can be useful. Maybe talking to other patients can be useful. These are also important mechanisms for treatment that go beyond the typical medical and surgical modalities that we talk about.
Transcript Edited for Clarity