Hidradenitis Suppurativa

HS symptoms start when inflammatory mediators trigger a cascade of keratin protein breakdown and clog hair follicles.² As keratin, sweat, and bacteria build up inside the follicle, it can eventually burst and set the stage for those deep, painful nodules, per the AAD. However, experts don’t fully understand the causes of HS. Ongoing clinical trials suggest immune dysregulation may play a role, as HS is commonly seen with other autoimmune diseases, but more research is needed to fully understand what drives the development of HS.³

Dr. Bierman says it’s likely multifactorial, and that certain factors increase a person’s odds of developing symptoms: 

• Genetic history: You have a much higher chance of developing HS if one of your biological parents has it, Shari Lipner, MD, an associate professor of clinical dermatology at Weill Cornell Medicine, tells SELF. Scientists have linked HS to mutations in certain genes, but more studies are needed. 
• Hormonal fluctuations: People who menstruate are more likely to be diagnosed with HS than people who don’t, which may be linked to hormonal fluctuations. This may explain why people who are assigned female at birth are more likely to have HS than people who are assigned male at birth.
• BMI: A higher BMI has been linked to a higher risk of developing HS, but the condition can affect people of all weights.⁴
• Smoking cigarettes: Some research has found that between 70% and 90% of people who developed HS smoked cigarettes, the AAD notes.   
• Other chronic conditions: HS is more likely to occur in people who have inflammatory bowel disease, metabolic syndrome, certain forms of arthritis, diabetes, and psoriasis, but more research is needed to understand why.⁴
• Race: In the United States, African Americans, Hispanics, and biracial people are more likely to develop HS than white people. The reasons for this disparity are complex, as SELF previously reported. 

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As we mentioned, HS is often mistaken for other skin conditions or infections, which can result in misdiagnosis and lack of proper care. In fact, research suggests some people live with HS for up to 12 years or longer before receiving an accurate diagnosis.⁵

If you’re experiencing persistent bumps or lesions on your body that you can’t explain or that haven’t responded to typical over-the-counter treatment, it’s time to see your primary care doctor, who can refer you to a board-certified dermatologist. 

If you believe you may have HS, don’t hesitate to bring it up specifically during your appointment. During the initial consultation, your dermatologist should ask about your family’s medical history and your personal medical history. There is no specific test for HS, but your doctor should also do a physical exam to get a better sense of your symptoms. During this time, they may take a sample of your skin (or pus, if there is any fluid present), per the US National Library of Medicine.

Ideally, you should try to see a doctor during a flare-up so they can note the severity and location of your symptoms. If you have photos of past flare-ups, especially if they’re worse than your current symptoms, make sure to share those during your appointment. This can give your doctor a better idea of your condition’s progress over time. 

Some health care providers use a three-stage system, the Hurley stages, to divide people with HS into three disease severity groups: mild, moderate, and severe.⁶ The three-stage system is an older model, however, so experts often use more detailed scoring systems and instruments for disease severity assessments. 

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There is no cure for HS, but individualized treatment can help you manage your symptoms and reduce flare-ups, so they hopefully don’t interfere with your day-to-day life. “There is no one-size-fits-all approach to treatment,” Dr. Lipner notes, but many exciting medications that could help suppress the disease are in the pipeline. Working closely with a board-certified dermatologist on a treatment plan tailored to your needs is crucial.

Depending on the severity of your symptoms, your doctor may recommend making lifestyle changes, like cutting out cigarettes if you smoke; adjusting your skin care routine, like using a benzoyl peroxide body wash or a gentler antiperspirant; or taking more aggressive measures, like oral medications; targeted wound care; or in-office procedures.

Medications

When prescribing medications to treat HS, Dr. Lipner says your doctor may consider any one of the following, or a combination of these methods: 

• Biologics can help people who have severe HS, and early intervention has the best results. These powerful drugs directly target the immune system to reduce inflammation.
• Topical or oral antibiotics will treat infected areas and help reduce inflammation.
• Hormonal medications, like oral contraceptives, may be helpful if your HS symptoms worsen around the time of your period.
• Some people may also benefit from certain oral retinoids, which have anti-inflammatory and scar-reducing effects.
• Certain diabetes medications can also help reduce inflammation.

Surgical and in-office procedures

In-office procedures can be especially crucial for people who have developed sinus tracts or tunnels beneath the skin, according to the AAD. Some in-office procedures that are considered for HS treatment:   

• A corticosteroid injection can reduce inflammation in early HS nodules.
• Painful, pus-filled lesions can be drained to immediately relieve pain and pressure. 
• A laser hair-reduction procedure can help reduce the amount of hair on the skin that’s contributing to your HS symptoms.
• Botulinum toxin injections can help reduce excessive sweating if that’s a trigger for your HS symptoms.
• A deroofing procedure removes the skin covering the top of an abscess or sinus tract, leaving it open to heal on its own. Your doctor may recommend deroofing if you have recurring lesions in the same location. 
• If medication is not working, a dermatologist may suggest a wide excision procedure to remove an HS lesion entirely.  

Since there are many ways to manage the symptoms of HS, Dr. Lipner says that if one treatment isn’t working, your dermatologist can try another potentially more effective approach. Bottom line: You’ve got options.

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During an HS flare-up, Dr. Lipner recommends using warm compresses to help ease the discomfort of deep, painful nodules. However, some people may find ice packs more effective for reducing mild discomfort. Over-the-counter pain-relieving medication can also help, as can loose-fitting clothing to prevent rubbing on a lesion and keep skin sweat-free.

Wound care is also important for managing symptoms and preventing a potential infection. Make sure to ask your doctor about how to properly clean open wounds and change dressings before attempting either by yourself. Most importantly, make a point to see your doctor regularly. “They can make sure that you’re on track with your treatment plan,” Dr. Lipner says. 

Minimizing a flare-up may require a slightly different approach or intervention than what was originally discussed for your treatment plan. Depending on your symptoms during a flare-up, Dr. Lipner says your doctor may choose to switch your medication or perform an in-office procedure, such as a steroid injection, to help relieve especially painful symptoms quickly.

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Living with HS can be tough physically but also mentally and emotionally. Having a supportive network of family and friends, as well as an empathetic care team, can help you feel grounded and steady when your condition flares up. Some people reach out to others with HS by joining a support group. The Hope for HS Foundation provides information and resources about diagnosis and treatment and offers virtual support group meetings. For additional resources, you can look into organizations like the HS Foundation and HS Connect.  

If you’re experiencing anxiety, depression, or feelings of low self-worth, you should do your best to talk to your doctor about it. They can help refer you to a mental health expert, so you can get the emotional support you need and deserve.

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Sources:

1. Archives of Dermatological Research, Stigmatization, A Social Perception Which May Have a Debilitating Impact on Hidradenitis Suppurativa Patients: An Observational Study
2. Seminars in Cell and Developmental Biology, Advances in Molecular Pathogenesis of Hidradenitis Suppurativa: Dysregulated Keratins and ECM Signaling
3. Therapeutic Advances in Chronic Disease, New Perspectives on the Treatment of Hidradenitis Suppurativa
4. International Journal of Women’s Dermatology, Comorbidities of Hidradenitis Suppurativa: A Review of the Literature
5. Canadian Family Physician, What Is Hidradenitis Suppurativa?
6. Reumatologia, Hidradenitis Suppurativa – Known and Unknown Disease
7. Annals of Translational Medicine, Hidradenitis Suppurativa and Psychiatric Comorbidities, Suicides, and Substance Abuse: Systematic Review and Meta-Analysis