Real Talk Rx: Hidradenitis Suppurativa (HS)

A Patient Guide to Treatment Options, Side Effects, Dosing, and Savings

By Kate Rope
BlackDoctor
https://blackdoctor.org/

Overview

Hidradenitis suppurativa (HS) is a non-contagious skin condition that can be treated. It causes small, painful bumps to form under the skin. These bumps often show up in places where skin rubs together, like your armpits or groin. Women are almost three times more likely than men to get HS, and it’s three times more common among Black people than white people. But there are big differences in how our HS is handled by the healthcare system. Black patients are less likely to get an early diagnosis, wait longer to see a dermatologist, have more serious symptoms when they are finally diagnosed, and are more likely to be treated in the emergency room, be hospitalized, and be sent to a surgeon for treatment.

A big reason for these differences is that Black patients haven’t been included in enough studies for HS. Plus, like many diseases that affect our community more heavily, funding for HS in general was very limited until 2018. That’s when the National Institutes of Health created grant funding specifically for HS research. Things have gotten better since then, but more progress is needed, especially since there is even less research on Black women. Better data will help us understand why HS is more common in our community, how to fix delays in treatment, and which treatments work best for Black women and the community as a whole.

The good news is that HS treatments have improved recently, and effective options are available. We put together this guide to help Black people living with HS — and their loved ones — understand the condition, learn about effective treatments (especially three new FDA-approved medications), and feel confident asking for the best medical care.

This guide focuses on biologic medications, one of the most advanced treatment options available for people with moderate to severe HS. Biologics work by targeting specific parts of the immune system involved in the inflammation that drives HS. However, biologics are only one part of HS treatment. Depending on the individual, healthcare providers may also recommend antibiotics, hormonal therapies, topical medications, corticosteroid injections, other medications, in-office procedures, or surgery.

Medicines:

Bimzelx | Cosentyx | Humira

What Causes HS?

Hidradenitis suppurativa starts in and around your skin’s hair follicles. Scientists don’t know exactly what sets it off, but research shows that your genes, hormones, and how your body creates inflammation are all part of it. Inflammation is your immune system’s response to infection or injury, meant to help you heal. But sometimes the immune system can cause too much inflammation or keep it going for too long.

Even though it’s not totally clear how hormones contribute to HS, research suggests they also play a role. Hidradenitis suppurativa usually starts after puberty, and for women (who make up most of the people with HS), flares can be linked to their menstrual cycle. HS is also more common in women with polycystic ovary syndrome (PCOS), a condition that affects hormones and periods. And HS can run in families. While obesity and smoking are associated with a higher risk of HS, they don’t explain why any one person develops the disease. 

Why Getting HS Treatment Sooner Matters

When HS is diagnosed later, the disease tends to be worse, and more skin areas need surgery. So, getting diagnosed and treated earlier might help reduce the permanent skin damage HS can cause and lower your chances of needing surgery. It will also mean you can start to feel better sooner. In rare cases, long-standing HS can also lead to a type of skin cancer called squamous cell carcinoma.

How to Get the Right Diagnosis

When HS symptoms start, they can look like bad acne. People can also mistake the condition for boils or cysts. As it gets worse, the bumps fill with pus and become very painful. Sometimes they burst, creating open sores that leak. In later stages, tunnels can form under the skin when abscesses connect. If you notice painful bumps, sores, or pimple-like spots in areas where your skin rubs together — like your armpits, under your breasts, around your waist or lower belly, or in your groin or buttock area — it’s a good idea to see a dermatologist. 

It’s important to meet with a dermatologist whether you’re just starting to notice symptoms or have had HS for a while. They’re the experts trained to diagnose HS and recommend the right treatments. It can also be helpful to find a dermatologist who specializes in darker skin tones. If you’re looking for a Black provider, which can be tough since only about 3% of dermatologists in the US are Black, these websites can help:

• BlackDoctor
• Black Derm Directory
• Skin of Color Society

You can also ask your primary care provider to recommend a dermatologist. When you make an appointment, ask about their experience treating skin of color.

U.S. doctors often talk about how severe HS is using “Hurley stages,” which are three levels named after the dermatologist who came up with them. 

• Stage I: You might get bumps or abscesses that come and go, but won’t have tunnels under your skin or a lot of scars.
• Stage II: This is when you start to see tunnels forming under the skin and some scarring.
• Stage III: This is the most serious stage when there are many abscesses, tunnels connect together, and there is widespread scarring in the affected areas.

There’s a newer way to classify HS that comes from Europe. It looks at two different stages: the “inflammatory stage” is when your skin is actively forming bumps in your hair follicles. The “noninflammatory stage” is when the inflammation has settled, but there’s still some skin damage. With this new approach, the Hurley stages are used to describe the type of skin damage you have. This helps doctors figure out if surgery is needed and what kind of surgery would be best to fix it. Your doctor may describe your HS using either of these approaches.

HS and Black Women: What We Know and Don’t Know

Studies nationwide show that HS is more common in both Black people and women. One U.S. study found that HS was about three times more common in Black women than in white women. However, there isn’t enough research specifically on Black women. Scientists still don’t know exactly how many Black women in the U.S. have HS or why it’s more common in Black people and women.

Hormones seem to play a part, though scientists aren’t exactly sure how. In one study, 62% of women said their symptoms got worse around their period, usually the week before. HS is also more common in women with polycystic ovary syndrome (PCOS), a condition that affects hormones and periods. Pregnancy can also affect HS. In a study where most participants were Black women, HS got worse during 62% of pregnancies, and slightly more had a flare-up after giving birth. This doesn’t mean women with HS have unusual hormone levels or that hormones cause HS, but it does suggest that changes in hormones can impact the condition.

HS Pain in Black Patients: You Deserve Care for It

HS can be a very painful condition, and research has found that Black patients with HS are four times more likely than non-Black patients to have “severe” pain from it. This isn’t surprising, given that Black patients are also more likely to be diagnosed later, when their disease may be more advanced. On top of that, research also points out that — as with many chronic pain conditions — the pain of Black patients is undertreated. In one study, nearly a third of Black/African American patients strongly disagreed with the statement, “I am satisfied with how my pain related to HS is being managed by my doctors.” That’s twice as many as non-Black/African American patients. 

Even though the first step to dealing with pain is to treat your HS, you might also need pain medicine until your disease is under better control. There are several kinds of medications that can help with HS pain. These include pain-relieving creams you put right on your skin, over-the-counter or stronger prescription anti-inflammatory drugs like naproxen, prescription medicines for nerve pain such as gabapentin and pregabalin, antidepressants that can also help with pain like duloxetine or amitriptyline, and, in really bad cases and only for short times, opioid pain relievers. If pain is a big part of your HS, make sure to talk to your doctor about the best way to manage it until your HS treatment starts working and your symptoms get better.

What Kinds of Treatments Are There for HS?

The main goals of treatment are to reduce flare-ups, relieve pain and itching, stop any infections, keep the disease from getting worse, and repair damaged skin. 

Medications for HS include antibiotics to fight infection and inflammation, drugs that help control hormones that might contribute to HS, and immune-modulating medications, which help calm down an overactive immune response.

If you have moderate to severe skin damage, doctors may recommend surgery to drain abscesses and remove damaged skin. Studies show that Black people with HS wait longer than white patients to get a correct diagnosis. They also tend to have more serious symptoms when they are diagnosed. Black patients are also more likely to see a surgeon before a dermatologist, and more likely to have surgery.

Medications 

Topical (applied to your skin)

• Clindamycin, an antibiotic that can lower inflammation and bacteria on the skin. 
• Resorcinol, a cream that helps remove dead skin and can reduce inflammation, pain, and HS bumps.

Oral (taken by mouth)

• Antibiotics to lower inflammation and cut down on bacteria that can cause infection. 
• Medicines that can affect hormones, such as birth control pills with estrogen, spironolactone, cyproterone acetate, metformin, and finasteride. Some hormone treatments are used mostly in women, while medicines like metformin can be used by both women and men.

Injections (shots)

Some of the newest medicines approved for HS are called “biologics.” Biologics for HS target specific parts of your immune system that are involved in inflammation. They’re given as shots under the skin. Patients usually inject themselves at home on a regular schedule (like every other week or weekly). The timing might change over time. 

These are:

• Bimzelx (generic name: bimekizumab-bkzx)
• Cosentyx (generic name: secukinumab)
• Humira (generic name: adalimumab)

Other Treatments

• In-office procedures, including:
  • Corticosteroid shots injected directly into bumps to treat inflammation. 
  • Laser hair removal to decrease the formation of bumps.
• Surgery can be an important part of HS treatment, especially for tunnels, scarring, and other skin damage that medicine can’t reverse. Here are some surgical procedures that can be performed in a dermatologist’s office:
  • Incision and drainage: Opening up bumps to let out pus and fluid.
  • Unroofing: Exactly what it sounds like. The skin covering a tunnel or abscess is removed, leaving it open so the area can heal.
  • Laser and electrosurgery: These methods use lasers or electricity to remove or destroy tissue damaged by HS.

For more serious HS, a surgeon may remove larger areas of affected skin, and this might need to be done in a hospital. 

How Can I Help My HS Heal?

It’s really important to know that HS is not your fault. Even if you have risk factors, like being overweight or smoking, that does not mean they are the reason you have HS. And poor hygiene definitely doesn’t cause it. If your doctor doesn’t take your HS seriously, makes you feel bad for risk factors that may or may not play a role, or doesn’t understand how complex the condition is, it’s time to find one who does. 

Here are things you can do to help with treatment, have fewer flare-ups, feel more comfortable, and lower your risk of infection:

• Use an antimicrobial soap or a cleanser with ingredients like benzoyl peroxide or zinc pyrithione (after talking with your healthcare provider) to help reduce bacteria on your skin.
• Be gentle with your skin. Scrubbing too hard can make inflammation worse. 
• Don’t wax to remove hair. If you shave, do so with care. If your budget allows, consider laser hair removal done by a dermatologist instead.
• Put heat on painful bumps. The American Academy of Dermatology suggests a warm compress made with water or black tea. 
• Use a mild antiperspirant. Look for one without alcohol, baking soda, parabens, dyes, or fragrances, all of which can irritate your skin. 
• Follow any wound care plan your dermatologist gives you. 
• Wear looser clothes and try to keep from getting overheated or sweating heavily during flare-ups, when — or if — you can.
• Talk to your provider about whether losing weight or quitting smoking might help improve your HS symptoms.

Questions to Ask Your Healthcare Team

• “How much experience do you have treating hidradenitis suppurativa (HS), especially in people with darker skin?”
• “Are my symptoms being caught early enough to treat with medicine? Do I have any skin damage that might need a procedure or surgery?”
• “Am I a good candidate for the newer medications that work with my immune system?”
• “Are there any clinical trials or new treatments I should know about?”
• “If we choose an expensive medication, will my health insurance cover it? If not, are there programs to help with the cost of meds?”
• “What kind of skin and wound care should I do to help my skin get better?”
• “Is there something I can use to treat my pain while I wait for other treatments to make my HS better?”

Conclusion

Learning about treatment choices can help you and your loved ones take a more active role in treating your HS and finding relief. The medications featured represent a new class of treatments that have been approved to treat HS, and each has its own benefits, risks, testing needs, and side effects. Your healthcare providers should share why a medicine is being recommended, what other options might work, and what support is available. To get the right treatment for you, seek clear information, timely care, and a plan that fits your needs. This is especially important for Black patients, for whom hidradenitis suppurativa is much more common compared with non-Black patients, but who often experience delays in diagnosis and much more severe symptoms when they are finally treated. The sooner you are able to get the right care for you, the sooner you can feel better. 

This guide is not intended to provide a comprehensive list of all available treatments for HS. The medications featured represent a selection of established and emerging treatment approaches that may be considered at different stages of the HS journey. Treatment decisions are individualized and depend on a number of factors. Patients should talk with their healthcare team about the full range of treatment options that may be appropriate for them. 

References

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This information is generalized and not intended as specific medical advice. Consult your healthcare professional before taking any drug or commencing or discontinuing any course of treatment.