HIDRADENITIS SUPPURATIVA HANDOUT

Hidradenitis suppurativa (HI-drad-en-I-tis sup-per-ah-TEE-vah or HS) is a chronic condition of painful bumps and draining sores of the skin. It usually affects the skin folds, such as the underarms, buttock crease, under the breasts and groin area. It is sometimes called “acne inversa,” although it is different from acne. HS is 2-4 times more common in females. It is also more common in African Americans. Onset is generally after puberty and most common between 20-24 years of age.

Unfortunately, HS is often misdiagnosed. In one study, the delay from onset of symptoms to diagnosis was 7 years and 5 providers were seen before the correct diagnosis was made.

WHAT CAUSES HS?

The exact cause of HS is not known. It is not caused by poor hygiene. Individual lesions of HS look like an infection, but research suggests they are not. However, the bumps and open areas often get secondarily infected.

WHAT DOES HS LOOK LIKE?

The lesions of HS usually start as a single inflamed, painful, raised lump (nodule). The nodule either slowly disappears (between 10 and 30 days) or opens up, draining pus. Eventually, healing occurs but a scar may remain. (For pictures, see below.)

HOW LONG DOES HS LAST?

The individual bumps and sores may last for weeks or months. They may keep coming back. In most cases, HS is considered a chronic, or long-lasting condition. Each patient is different, and the bumps may get better or worse over time.

Emotional Considerations

HS can be a hard condition to have. It can cause pain, leaking, bad smells, and scars. For many, the hardest part of having HS is the emotional toll. It is common for people with HS to have feelings of anxiety, social isolation, and depression. Sometimes it can be helpful to talk to someone about how this is affecting your life. Your provider can help connect you with a counselor. Thankfully, there are patient support groups and many good treatment options.

TREATMENT

General Measures

Bleach Baths (Swimming Pool Baths)

Some patients find diluted bleach baths (swimming pool baths) helpful. Add 1/4 cup of bleach to a half tub of water. Soak for 5-15 minutes, 2-3 times a week.

Topical Therapy:

Topical antibiotics like clindamycin are often prescribed. Apply to affected areas 2/day.

Oral Antibiotics:

Antibiotics (e.g. doxycycline) can be very helpful. They are usually prescribed over several months.

Hormonal therapy:

Girls and women with HS may notice that their HS changes with their menstrual cycle. Some forms of birth control can help regulate the hormones that make HS worse. A pill called spironolactone can block the hormones that make HS worse. Your doctor can discuss the risks and benefits of hormonal therapy with you, but these medicines are generally considered quite safe for girls and women with HS. (As a general comment for females with HS in the groin, tampons may be better than sanitary pads as they minimize moisture to that area.)

Laser Hair Removal

Laser hair removal can be dramatically helpful in some patients.

Biologic therapy:

More severe cases of HS that have not responded to other treatments may benefit from a biologic medication (a "shot" given regularly).

Surgery

Surgery can be very beneficial for extensive HS, or HS resistant to medical intervention.

Pregnancy and HS treatment:

If you are pregnant, planning pregnancy, or breastfeeding, please discuss this with your doctor as your medication plan may need to be adjusted.

For pictures, see here.

References

Society for Pediatric Dermatology Patient Handout

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