If you've been diagnosed with hidradenitis suppurativa (HS), you're probably wondering, "What can I do to feel normal again?” The good news is that this chronic (meaning lifelong) skin condition can be managed so you reduce the pain and discomfort of the oozing bumps that appear under the skin, usually in the armpits, genitals, groin, buttocks, or under breasts. But there’s no cure for this disease—or even an explanation as to what is causing those lumps to appear in the first place. Annoying, we know. So the goal of treatment will vary depending on your stage. If you’ve got a mild case, you’ve got a good shot at reducing flares until they’re no longer coming back. If your case is more advanced, then the goal is to manage the pain and the constant draining of pus and other fluids, as well as slow down the disease’s progress so it’s no longer controlling your life. Wherever you are in your HS treatment journey, you’re sure to have questions. We’re here to answer them.
What Is HS, Again?
While doctors still don’t understand what causes the painful, recurrent lesions to form, the best guess at the moment is that there seems to be some kind of defect in the hair follicles on your body. In HS, inflammation develops around follicles and causes them to eventually break open. This releases the hair shaft and normal bacteria from the follicle under the skin, which leads to more inflammation. For some reason—maybe because of faulty genes or some type of environmental trigger like hormones or chemicals—your immune system gets reprogrammed to attack these ordinarily friendly bacteria. The resulting inflammation makes it easier for bacteria to proliferate, which causes more inflammation and pus-filled nodules that look like boils.
Left to run their course, these nodules grow, swell, and burst over the span of a week or two, spilling foul-smelling blood and pus from deep in the skin, staining your clothes. All you know is that these lesions hurt like heck and take a long time to heal. In mild cases, or early in the disease, people tend to have solitary nodules mainly in one area. Stage 1 is nodules coming and going without scar or tunneling. Stage 2 is when the presence of one or a few widely separated tunnels in one or multiple body areas, and 3 widespread and/or interconnected tunnels or scarring in one or multiple body regions. Stage 1 can be in multiple body areas, and stage 3 can be in only one body area.
What Is the Best Treatment for HS?
It depends. Doctors try a combination of medical treatments and sometimes surgery depending on the type of nodules you have, how severe they are, and where they're cropping up on your body—with the understanding that what works for one person may not work for you. What’s more, HS doesn’t just affect your skin. It’s an inflammatory condition, which means there are a wide range of illnesses that often occur with it (called comorbidities)—like inflammatory bowel disease (IBD); spondyloarthritis (SpA), a form of arthritis that causes back pain; anxiety and depression; and metabolic syndrome, a cluster of risk factors that include obesity, high blood pressure, and high cholesterol that ups your risk of diabetes, strokes, and heart disease. That’s why it’s important to get a whole team of pros that can help you get everything under control—your body, skin, and soul.
What Medications Are Available for HS?
You will probably be on several of these medications, including the topicals, as you and your dermatologist find a way to manage your HS. Expect some trial and error. Medications can work at first, then stop working after a while, which may mean trying another, stronger one in that group (antibiotics, say). Or you may hit upon the perfect combo from the get-go. Sometimes the research on how well some of these medications perform is based on small studies and anecdotal evidence (meaning reports from patients and doctors), or your doctor’s own personal experience with HS patients. It’s tough but try to be patient—eventually you and your team of docs will find the right meds (or close to it) for you.
Topicals for Hidradenitis
Your doctor will probably suggest you use an antiseptic body wash as well as antibacterial ointment on your nodules to control inflammation and reduce the number of bacteria on your skin. If you only have a few nodules in one area of your body, then these ointments and soaps can reduce flares to the point of remission, especially if you have laser hair removal beforehand.
Antiseptic washes: They usually contain antibiotics chlorhexidine or benzoyl peroxide (which seems to be particularly effective), and you’ll use one every day on the parts of your body affected by HS. They can break up the sticky layer of bacteria that attaches to the nodules, called a biofilm. Available over the counter, they can help control the smell from the nodules as they drain, and also prevent flare-ups.
Common washes include:
- Oxy 10, PanOxyl Creamy Wash (benzoyl peroxide)
- Hibiclens, Betasept (chlorhexidine)
Antibiotics: If your nodules are painful and swollen, then your doctor will prescribe an antibiotic ointment or lotion to put on twice a day. Topical antibiotics are used during acute flares to reduce pain and inflammation, whether you have a mild or moderate case. The most effective antibiotic lotion is clindamycin (Cleocin).
Keratolytics: These exfoliants help break up and loosen skin cells to reduce the size and pain of nodules in stage 1 and 2 cases of HS. Resinol (resorcinol) is commonly prescribed.
Systemic Medications for HS
Your doctor may put you on one or several systemic medications—meaning oral or IV drugs that affect your whole body, not just the nodules themselves (like the topicals do). These include antibiotics, hormonal therapy (birth control pills, say) and biologics. Each does different things, but the goal of each is to reduce flares and pain—and, depending on which stage you’re in—even put the disease into remission. Which drug you take depends too on your other conditions. For instance, if you have polycystic ovary syndrome (PCOS) or some sort of hormonal imbalance, a doctor will probably put you on an androgen-blocker since that hormone seems to play a role in both conditions.
Bacteria may not cause HS, but they can make it worse, and oral antibiotics are given to help diminish their numbers when you have multiple active nodules. Doctors also prescribe them to reduce inflammation and stabilize the condition, and, when you have a severe case of HS, to keep the pain and draining pus from getting worse before starting surgery or a more heavy-hitting med like a biologic.
Your dermatologist may start you on one antibiotic, usually in the tetracycline family (doxycycline or minocycline), if your HS is mild but topical antibiotics aren’t controlling it well. For more moderate or severe cases, you may take a combo of clindamycin with rifampicin for at least 10 weeks—French researchers found that 300 mg of clindamycin along with 300 mg of rifampicin twice a day together improved the symptoms and quality of life for 82% of the HS patients in the study.
Antibiotics come with caveats, though. Unlike ordinary bacterial infections, the antibiotics don’t clear up the condition forever. At best, they manage it until you stop taking the meds. Second, you take strong doses of these drugs for weeks and sometimes months, which can give you such side effects as diarrhea, nausea, and yeast infections. And finally, doctors are wary of using them long term, as bacteria can become resistant to them. Both surgery and biologics are better solutions in the long run.
Commonly prescribed antibiotics include:
- Sumycin, Brodspec, Tetracon (tetracycline)
- Adoxa, Monodox, Periostat (doxycycline)
- Dynacin, Minocin, Myrac (minocycline)
- Cleocin (clindamycin)
- Cipro, Ciloxin, Cetraxal (ciprofloxacin)
- Rifadin, Rimactane (rifampin)
- Flagyl (metronidazole)
Even though people with HS tend to have normal hormone levels, experts believe that androgens, the male sex hormones that include testosterone, play a role. The clues: Some female HS patients also have PCOS (another condition driven by abnormal hormones); HS usually begins after puberty (most often in your 20s and 30s) and seems to taper off after 50 when menopause hits (but not always). That’s why your doctor may put you on an androgen-blocker if your flare-ups get worse right before or during your period or you have irregular cycles.
If you’re a guy losing hair in what’s called male-patterned balding (thinning on the crown with a receding hairline), you might also be a good bet for hormone therapy—it’s a sign your hair follicles are sensitive to DHT, a type of testosterone. While there’s not a lot of evidence backing their use in hidradenitis, androgen-blockers can improve or even clear up mild to moderate cases, either by themselves or in combination with other medications (like topicals).
- Birth control pills, with a high estrogen-to-progesterone ratio given only to women
- Aldactone or CaroSpir (spironolactone), blood pressure medications, usually given to women
- Propecia or Proscar (finasteride), meds used to shrink the prostate in men (used to re-grow thinning scalp hair to help normalize the use of these drugs for something other than treatment of prostate issues)
These oral acne-fighting meds can shrink oil glands and reduce the number of bacteria in both the oil glands and on the skin, and dermatologists have been prescribing them for people with acne for years. But the evidence for how they work on HS is mixed. Nearly two-thirds of HS patients had no response when they took the retinoid isotretinoin, according to one review study. Acitretin, another retinoid, might be a better bet for improving outbreaks and pain, even though the evidence behind it is based on small sample-size studies. And if you’re a woman between the ages of 20 and 40, you may not want to take retinoids at all, as they can cause birth defects if you get pregnant.
The most commonly prescribed retinoids are:
- Amnesteem, Claravis, Sotret, Absorica (isotretinoin)
- Soriatane (acitretin)
This drug treats high blood sugar, and your dermatologist may prescribe it if you show signs of prediabetes—or the potential to develop it—like if you have a high BMI and your lab tests come back showing higher-than-normal glucose levels. The goal with metformin is two-fold. It’ll reduce insulin resistance and lower your risk of developing type 2 diabetes and, later, heart disease. And the drug can also decrease the number of nodules and may even put you in remission. How so? Uncontrolled insulin levels can fuel inflammation, so reducing its levels can also affect flares. In one small study, two-thirds of HS patients showed improvement and 19% of those went into remission. Common brand names include Fortamet, Glucophage, Glucophage XR, Glumetza Riomet.
Biologics are used in a variety of autoimmune disorders to control different types of proteins that fuel inflammation. People with HS produce too much TNF-alpha (among other inflammatory proteins), so biologics called TNF-inhibitors, like Humira (adalimumbab) and Remicade (infliximab), block these proteins to slow down inflammation and prevent the disease from progressing. Dermatologists tend to prescribe TNF-inhibitors in moderate-to-severe cases that haven’t been helped by other medications or to decrease the number of inflamed lesions before surgery.
Only Humira has been approved to treat HS, which means insurance would likely pay for the weekly injections, which you give yourself. But Remicade, given via an IV at the doctor’s office, has been used off-label to good results, according to study that found that after eight weeks of being treated with Remicade, patients had at least a 50% improvement in their HS symptoms and quality of life.
Surgery and Laser Treatments
Doctors will use lasers (and sometimes old-school scalpels) to help control HS. In milder cases, removing hair from the armpits and groin can reduce your HS to the point of remission. In more serious cases, surgery may be the only way to control the pain and suffering when you have many tunnels.
Laser Hair Removal
Using a laser to zap hair at its roots so it grows more slowly can keep outbreaks from recurring in some parts of your body. In fact, it can reduce these outbreaks by about 70% in the groin area to roughly 75% in the armpits, say experts. This is especially true if you still have a mild case of HS, but hair removal is also helpful in moderate-to-severe cases as well if you don’t have tunnels. You’ll need to go once a month for at least three months and continue using the antiseptic washes and antibiotic lotions to keep nodules at bay.
If your lesions have formed tunnels—inflamed areas under your skin connecting the nodules—your doctor will probably recommend surgery to remove the damaged tissue. What kind of procedure you have, though, depends on the stage of the disease.
For moderate cases (a single tunnel in one affected area ), your provider performs a procedure called deroofing, an in-office procedure. You’ll be given a local anesthetic or topical anesthetic (sometimes a numbing cream followed by an injection) and then the doctor will open up the tunnel to scrape out the deep-red, jelly-like material made up of white blood cells, bacteria, and tissue. As the tunnel heals, it closes up and forms a scar, preventing nodules from erupting there again, at least in the majority of cases.
For multiple, interconnected tunnels in patients who have a severe case that’s not improving with medication, doctors use a laser or scalpel to remove skin, hair follicles, and oil glands from these tunnels. This is a bigger operation, requiring general anesthesia and sometimes a hospital stay.
After the operation, the wound is either closed with stitches or skin grafts or left to heal on its own, with dressings and ointments. About half of all HS patients find that the outbreaks no longer occur in those areas operated on—even though they may have outbreaks in other places. But even better, the pain level from the active lesions will go down from nine or 10 to a two or three.
Other Types of Therapy That May Help
Watching what you eat. Consuming fewer carbs and more protein can help reduce inflammation for everyone—and it may help you shed pounds, lowering the risk of other diseases associated with HS like heart disease and type 2 diabetes as well as improving HS symptoms, according to some studies. But besides losing weight, banning certain foods from your diet may also help with HS flares.
There’s some evidence that dairy-free diets improve symptoms for patients as does avoiding yeast-products, like beer, cider, and miso. Staying away from nightshades—tomatoes, bell peppers, eggplant, and white potatoes—has worked for others, perhaps because these plants contain solanine, a chemical which may increase inflammation. If you want to try modifying your diet, keep a log of foods to see which ones trigger or make symptoms worse.
Easing your pain. Pain is ever-present when you have HS, which is why you need a way to manage it when it gets out of hand. Your provider will probably want you to start with soothing creams and gels that contain 5% lidocaine and pain relievers like acetaminophen and ibuprofen or other nonsteroidal anti-inflammatory drugs (NSAIDs).
If your lesions still hurt, then your doctor will prescribe an SNRI like duloxetine, an antidepressant that reduces pain signals to the brain, or gabapentin, an anti-convulsant that affects pain caused by nerve damage. For pain after surgery or if nothing else helps, you may take opioids like tramadol, but always under your provider’s watchful eye.
Some common pain relievers include:
- Tylenol and other brands (acetemenophine)
- Advil and other brands (ibuprofen)
- Aleve and other brands (naproxen)
- Lidoderm and other brands (lidocaine)
- Gabarone, Neurontin (gabapentin)
- Cymbalta (duloxetine)
- Ultram (tramadol)
Taking supplements. People swear by turmeric, which is an anti-inflammatory, but the evidence that it can help HS flares is all anecdotal. There is slightly more scientific evidence backing zinc supplements. Taking 90 mg of zinc every day if you have a mild or moderate HS may decrease nodules to the point of remission, according to one small pilot study. That’s because zinc plays a big role in your immune system’s ability to fight off harmful substances and repair damaged cells; low levels may contribute to lesions and slow healing.
Caring for your wounds. Whether you have one open lesion or tracts of them, you will have to become a pro at tending to your wounds so they can heal more quickly. Of course, your dermatologist can show you how, since providers have an array of products, like specialized dressings made from highly absorbent material. The best dressings are made up of three layers—the contact layer next to the open lesion, the absorbent layer that soaks up the pus and fluids, and a barrier layer to keep bacteria out. For smaller open lesions, try a sanitary pad with the adhesive side attached to your clothing, as some HS patients have done.