Hidradenitis suppurativa (HS), sometimes called “acne inversa,” is a skin disease that causes inflamed skin nodules in both the underarm area (armpit) and the groin. Unlike ordinary pimples, which appear on the surface of the skin, the nodules go directly into the layers of the skin. “When it flares it's so painful and itchy!” one myHSteam member lamented. Another described their symptoms as “Chafing and itching.”
HS nodules aren’t caused by bad hygiene or any sort of contagious illness, but by blockage and inflammation of the hair follicles. There are ways to deal with the bacteria that cause the worst symptoms, but HS symptoms can frustratingly appear, recede, and flare up again. Dealing with those symptoms can lead to further problems, as one member found. “Since I have been diagnosed with HS, keeping a job has become somewhat difficult, with me having constant flare-ups. Sometimes the difficult task of wearing clothes that are appropriate [means] I have lost jobs.”
While there is currently no cure for HS, a variety of treatments have been found to ease the symptoms.
One of the most important things people with HS can do is to take good care of their skin. Mild HS can often be eased by a skin care routine. This can take different forms. One myHSteam member described a detailed routine she used to avoid flare-ups: “I found a few things that help with my breakouts, which are: Clindamycin lotion, activated charcoal body wash by Bath & Body Works, exfoliating, and moisturizing.” Several members swear by Hibiscrub Antimicrobial Skin Cleanser or Hibiclens Antiseptic Skin Cleanser. “I’m using Hibiscrub when I get [breakouts]. I find it really helps,” one said.
Several members mentioned that, while deodorant and antiperspirant could cause flare-ups, going without it wasn’t any better. Sweat caused severe itching in one member. “I sweat so much for absolutely no reason, which makes [the] itch so bad!”
Different deodorants were mentioned as a solution. “I use Tom’s of Maine natural deodorant. It’s not an antiperspirant and won't clog pores,” said one member. Another said, “Arm & Hammer smells better and lasts longer than Tom’s.” Only one member seemed to be helped by going without deodorant. “I always [used antiperspirant], but discontinued that six months ago and haven't had a new boil since.”
External creams and skin rubs for HS are commonly discussed in the myHSteam community. Members had mixed results with hydrocortisone cream. One member answered in the affirmative when asked if it had helped with itching. “Yes, also allergy meds, especially Benadryl.” Another reported no effect. “It didn't really help for me, unfortunately. Tea tree oil helped a bit.” Tea tree oil was also mentioned by another member. “Tea tree oil is antiseptic and antibiotic.” Vicks VapoRub helped one member. “Try to put Vicks on new outbreaks before they are raw or open.”
Both acne washes and bleach baths have come up as potential treatments. A member explained bleach baths as, “A small amount of bleach in a full tub bath; it helps with bacteria that causes the smell.” The ratio of water to bleach was specifically mentioned by another member. “One ER doctor told us it was 3/4 cups of bleach per bathtub full of warm water. Sit in it for two minutes, then rinse off.” Guidelines for bleach baths may vary, and the American Academy of Dermatology recommends following the directions given by your dermatologist.
Simple warm compresses have also been suggested as a treatment. “When I have flare-ups, it helps to use a hot wet cloth that is as hot as you can handle it and apply as much as possible to the spot repetitively; it soothes the pain and causes it to self-rupture.”
Tight or restrictive clothing can rub at affected areas, making any symptoms worse. On myHSteams, one item comes up constantly as a problem: underwear. One member said, “I’ve stopped wearing underwear as much as I can. Less rubbing, less irritation.” Another said, “I have noticed that tight clothing and underwear tends to cause a flare-up.”
“I mostly wear dark clothing. I have mattress protectors, copious amounts of bedding, and lots of stretchy leggings and loose fitting baggy clothes to wear,” one member shared. “Avoid tight clothing,” another said.
Watch as HS expert Dr. Hadar Lev-Tov discusses the options available for dressings and bandages for people with HS.
Various wraps, skin rubs, and bandages show up in members’ discussions about how to deal with breakouts, boils, and abscesses. One member gave the following advice to another about how to deal with boils: “If they are not open, use alcohol on a cotton pad or something that you can saturate and leave on the area for a few minutes. Alcohol destroys them, drying them out. I use a little aloe vera or coconut oil once they dry out.” Another member told the same person, “Witch hazel is definitely useful in more sensitive areas.”
Wraps or warm compresses that protect the injured area are also recommended by members. “Packing the wound does help,” advised one member to another who was dealing with cysts.
Another suggestion for a member dealing with recurrent groin rashes and cysts (described as “lots of red angry skin that's open”) was to make bandages from paper towels. “I fold a soft paper towel the length of the wounded area and put wound tape to hold in place. Be careful to avoid hair. Uncomfortable at first, but there is relief. I have learned there has to be a layer between the wound and clothes.”
Another member mentioned specific bandages. “I use Duoderm and a Tegaderm to bandage that area. I also put a silver powder on the wound to help healing before dressing it. This helps heal, as well as kill any bacteria.”
A combination of medication and bandaging helped one member reduce symptoms. “Neosporin is an antibacterial ointment that promotes healing and reduces the chance of infection in wounds. It also helps reduce scarring. Bandages are useful in making sure the ointment isn't rubbed away before it can be absorbed into the area.”
Diet may have an impact on HS flare-ups. The autoimmune protocol diet, which is supposed to control symptoms of autoimmune disease by reducing inflammation, has been mentioned by several members. “I have been doing the autoimmune protocol for a couple weeks, with pretty good results,” one member said.
The diet hasn’t had a great deal of research and what is there is inconclusive. A 2017 study of the AIP diet showed modest improvement towards Crohn’s disease in those who followed the diet, but a 2019 study examining the effects of the diet on those with Hashimoto’s thyroiditis showed no clinical changes.
Other diet changes come up among myHSteam members as well. A member advised all other members, “For anyone reading this and suffering from HS, you should look into the keto diet.” Another member made a broader proclamation, “Eat more veggies and fruits.” A third member said turmeric capsules help. “I have found that turmeric has significantly helped, even putting my HS in remission for two years.”
One member found the best way to combat symptoms was to avoid dairy products, “I really think that dairy causes flare-ups because it causes inflammation, so if you can, try getting off of dairy.” Members also provided longer lists of foods to avoid: “Nightshade, gluten, legumes, sugars, dairy products, and a few other foods have the potential to be inflammatory agents for us.”
Obesity is a risk factor for developing HS. Losing weight is often suggested by health care providers as a first-line treatment. Some members reported this as being a problem. “Doctors are telling me to exercise as I am overweight, but some days I cannot even move with the pain.” Others mentioned difficulty exercising with symptoms. “After a bit of a cheat weekend, diet-wise, I was supposed to make up for it today on the exercise bike, but that's going to be agony.”
Hot, humid weather often makes HS symptoms worse. “Trying to stay out of this heat. It really flares me when I get too hot and sweaty,” one member said. Another member said summer meant worse symptoms. “Middle of summer is the worst time of year. I can't escape the heat and it makes my flare-ups so bad!”
Mental health is just as important as physical health with HS. One member reported worse symptoms under stress. “I find my biggest trigger for flare-ups is stress — me stressing can cause a flare-up in a matter of hours.”
Depression and fatigue often accompany HS. “Seems this disease and depression go hand and hand,” another member commented. When any member mentioned those symptoms, other myHSteam members tended to rally around them. “It is a comfort to know there are others out there like us,” a member admitted.
The treatments mentioned above are commonly discussed in the myHSteam community as well as recommended by doctors, but other possible home remedies also turn up. One member recommended “warm apple cider vinegar baths” for flare-ups. Another shared a successful treatment with CBD oil. “Lately, I've tried CBD oil to get lesions to close that have been open for a long time. I put a little oil on my fingers and just rub it on.”
If your symptoms are especially severe, you may need more than a home remedy. Your dermatologist can tell you if you are a candidate for prescription medication or surgery. It is especially important to talk to a dermatologist if your symptoms suddenly get worse or new ones develop.
When you join myHSteam, you can find support and advice from a community of almost 7,000 people. What home remedies have worked for you? Comment below or start a conversation on the myHSTeam site.