Patient Expectations and Durable Response in HS Treatment

Hidradenitis suppurativa (HS) is often considered one of the most challenging chronic inflammatory skin diseases to manage in routine clinical practice. Characterized by recurrent and painful nodules, abscesses, draining tunnels, and progressive scarring in intertriginous areas, the disease carries a disproportionate burden on quality of life, psychosocial functioning, and work productivity. At 3 recent Dermatology Times Case-Based Roundtable events, F. George Hougeir, MD; Afsaneh Alavi, MD; and Harrison Nguyen, MD, MBA, MPH, moderated discussions with dermatology clinician attendees to review 3 patient cases of HS and the use of biologics.

Hougeir is a dermatologist and Mohs surgeon at Southeast Dermatology Specialists in Georgia; Alavi is a dermatologist and director of the medical dermatology fellowship at Mayo Clinic in Minnesota; and Nguyen is a dermatologist, Mohs surgeon, and managing director of Harrison Dermatology and Research Group in Texas. The moderators agreed that the clinical impact of HS often far exceeds what is suggested by lesion counts alone, particularly in patients with ongoing pain, drainage, and anxiety related to disease progression.

Although HS is frequently described using static staging systems such as Hurley classification, moderators emphasized that these tools offer an incomplete picture of disease burden. As Hougeir noted, although Hurley staging remains widely used, attendees emphasized its limitations in capturing dynamic inflammatory activity.

Many clinicians now rely on dynamic assessments, including inflammatory lesion counts and patient-reported outcomes, to guide treatment decisions. Measures such as the International Hidradenitis Suppurativa Severity Score System and Hidradenitis Suppurativa Clinical Response (HiSCR) were referenced as helpful frameworks, particularly when evaluating response to systemic therapies over time.

Across the dinner discussions, clinicians revisited a familiar but evolving question: How can biologic therapies be optimized for patients with moderate to severe HS in real-world settings? Although antibiotics, hormonal agents, and procedural interventions remain part of standard treatment, the moderators consistently noted that many patients cycle through these options with incomplete or transient benefit. This pattern often results in delayed disease control and cumulative tissue damage.

The expanding biologic options have shifted the focus from short-term symptom suppression to long-term disease modification. Attendees highlighted that biologics are increasingly being considered not only for severe disease but also for patients with moderate HS whose quality of life is substantially impaired. Nguyen agreed that earlier and more strategic use of biologic therapy has the potential to alter disease trajectory, reduce flares, and improve long-term outcomes.

Rather than recounting individual presentations, the discussions highlighted recurring clinical themes that transcend any single case. These themes—when to escalate therapy, how to choose among biologics, how to define meaningful success, and how to sustain response—formed the basis of expert dialogue and provided a practical framework for clinicians navigating HS management today.

Managing Expectations and Defining Success

Another recurring theme across discussions was the importance of aligning clinician and patient expectations at the time of biologic initiation. In a case involving a middle-aged man with recurrent flares and significant quality-of-life impairment, moderators discussed how frustration with prior therapies can shape patient perceptions and expectations for new treatments.

Attendees also emphasized that patient education is critical early in the treatment course. Alavi agreed, stating that framing HS as a chronic, relapsing condition helps set realistic expectations while reinforcing the goal of sustained improvement rather than immediate cure. Discussions highlighted the value of explaining clinical end points, such as HiSCR, in patient-friendly terms to contextualize treatment progress.

Hougeir noted that success in HS is often multidimensional. Reductions in pain, drainage, and flare frequency may be as meaningful to patients as decreases in lesion counts. The moderators agreed that acknowledging these improvements can help patients recognize progress even when complete clearance is not achieved.

Time to response was another key consideration. Hougeir also stressed the importance of counseling patients on expected timelines for improvement and the possibility of partial or gradual response. Early follow-up visits were viewed as opportunities to reinforce adherence, address concerns, and distinguish between delayed responders and true nonresponders.

Overall, each moderator agreed that proactive communication and expectation setting are central to maintaining adherence and optimizing long-term outcomes with biologic therapy. Several attendees noted that early follow-up and proactive communication can help identify patients who are improving slowly vs those who may require a change in strategy.

Durability of Response and Management

Long-term efficacy and safety data featured prominently in each group, particularly as clinicians consider biologic therapy earlier in the disease course. Moderators agreed that durability of response is a critical differentiator between biologics and conventional systemic treatments, which often provide only temporary relief.

“My experience with biologics is: This is not a cure. Patients are still going to get lesions, but they’re not as painful, don’t last as long, and they’re not getting as many new ones,” one attendee said.

Each moderator reviewed emerging long-term data for both IL-17 inhibitors and tumor necrosis factor inhibitors, noting that sustained HiSCRs and maintenance of quality-of-life improvements are increasingly relevant in chronic HS management. Nguyen emphasized that long-term data help inform discussions with patients about treatment expectations and the likelihood of sustained benefit.

Safety considerations were also central to biologic selection and continuation. Attendees discussed monitoring for infections, inflammatory bowel disease, and other adverse events of interest, tailoring surveillance to individual patient risk profiles. Moderators agreed that familiarity with a biologic’s safety profile can increase clinician confidence and support long-term use.

Strategies for managing secondary loss of response were explored in detail. Alavi described reassessing adherence, optimizing dosing intervals, addressing comorbidities, and considering a switch in mechanism of action when appropriate. Importantly, moderators cautioned against prematurely discontinuing therapy at the first sign of disease fluctuation, emphasizing the importance of longitudinal assessment.

Conclusion

Across these case-based discussions, moderators and clinician attendees emphasized that HS management is evolving rapidly as biologic therapies expand and clinical experience grows. Although traditional approaches such as antibiotics and procedural interventions remain important components of care, many patients continue to experience persistent inflammation, pain, and progressive tissue damage despite these strategies.

Biologic therapies are increasingly being integrated earlier in the treatment pathway, particularly for patients whose disease burden is not adequately captured by lesion counts alone. Moderators agreed that factors such as recurrent flares, early tunnel formation, quality-of-life impairment, and patient-reported symptoms should prompt clinicians to reconsider treatment strategy and evaluate whether systemic biologic therapy may be appropriate.

At the same time, no single biologic therapy is universally optimal. Treatment decisions require careful consideration of disease characteristics, prior therapies, comorbid conditions, safety profiles, and patient preferences. Shared decision-making and proactive patient education were viewed as essential components of successful long-term management.

Ultimately, the discussions reinforced that effective HS care requires both timely intervention and sustained monitoring. As additional long-term and real-world data emerge for newer biologics, clinicians will continue refining strategies to optimize response durability, improve quality of life, and potentially alter the long-term trajectory of this complex inflammatory disease.