Treating Your Hidradenitis Suppurativa (HS)

This article is for people living with HS and their care partners, or anyone who wants to learn more about HS. The goal of this activity is to help you talk to and work with your doctor about treatment for HS and its symptoms.

You will learn about:

• What HS is and what may cause it or increase your risk for it

• HS symptoms

• Making a treatment plan and ways to manage HS and its symptoms

• Medicines that may be used and possible side effects

• Questions to ask your doctor

HS is a long-term, or chronic, health condition that happens when your hair follicles get blocked causing swollen, painful lumps to form under your skin. As HS progresses, lumps can break open as sores that seep fluid and blood. They can then heal over, forming tunnels under your skin that can cause scars. Sweat and bacteria that normally live in your skin can then get trapped, causing swelling (inflammation) and infections.

HS can be different for different people, but is believed to be caused by a combination of your genes (traits you inherit) and factors such as hormones, smoking, and being overweight. You may also have an increased risk of HS if you have certain health conditions like arthritis, severe acne, diabetes, metabolic syndrome, or inflammatory bowel disease (IBD).

HS symptoms can range from mild to severe HS that greatly affects your quality of life. Symptoms can be different for different people and may include:

• Itching, burning, discomfort, or pain

• Small, indented areas with blackheads

• Painful pea-sized lumps that can last for weeks or months

• Lumps that break open as sores that drain fluid with an odor and blood and can be slow to heal

• Tunnels under the skin connecting the lumps that can cause scars

HS symptoms can go through periods when they improve (remission) and then get worse (flare up). Flare-ups can often be triggered by factors such as gaining weight, hormone changes, stress, heat, sweating, and your period (menstruation). But sometimes flare-ups can happen without any known cause.

You and your doctor will make a treatment plan together that best fits your individual needs. Be sure to tell them about your symptoms, how HS affects your daily life, any flare-ups and triggers, and your personal preferences and wishes.

While there's no cure for HS, getting the proper care and treatment can help:

• Manage symptoms, such as working to relieve pain and heal wounds

• Prevent or reduce flare-ups

• Keep HS from getting worse and help prevent complications (additional problems) like infections

• Protect your quality of life and mental and emotional well-being

Depending on your symptoms and how severe HS is, your doctor may recommend you also see a dermatologist who specializes in treating skin conditions and a pain specialist.

For some people, especially those living with mild HS, symptoms can sometimes be managed by self-care such as:

• Applying warm compresses

• Treating skin gently and avoiding irritants

• Lifestyle changes, such as avoiding triggers to help prevent flare-ups, maintaining a healthy weight, and not smoking

Your doctor may also recommend additional treatment, including for more severe HS symptoms, such as:

• Wound care and a skincare routine

• Procedures such as removing an individual lump or tissue to expose tunnels under your skin, or laser therapy to help with sores or hair removal

• Medicines

• Joining a clinical trial

Medicines your doctor may recommend, alone or in combination, can include:

• Antibiotics applied to your skin (topically) or taken by mouth (orally) to help fight infections

• Steroids injected into sores or taken orally to help reduce inflammation and pain

• Medicines to help regulate hormones taken orally to help with flare-ups

• Retinoids taken orally to help slow down skin cell growth, control keratin (a protein that may block hair follicles and lead to lumps) production, and reduce inflammation

• Biologics given by injection to block substances in your immune system (your body's natural defense system) and reduce inflammation

• Pain medicines, topically or orally

• Other topical medicines to cleanse or soothe your skin, reduce inflammation, and help with wound healing

All medicines can have side effects. Some common ones that may happen with certain medicines used to help manage HS and its symptoms can include:

• Skin redness, itching, or burning with topical medicines

• Pain near where the shot was given with injected medicines

• Nausea, diarrhea, headache, infections, rash, dry skin, high blood pressure, or weight gain with oral medicines

These are not all side effects that may happen. Ask your doctor or healthcare team member for a complete list and when to call them or seek emergency medical care because of side effects.

Talking to your doctor or healthcare team member about HS and your symptoms and quality of life is key to getting proper care and treatment.

Questions you can ask can include:

• How can we help manage HS and its symptoms and protect my quality of life?

• Are there any lifestyle changes I should make?

• What treatments are available, and what are their side effects

• What wound care and skincare routine do you recommend?

• Is there another healthcare team member or a specialist I should see?

• What should I do if I start to feel stressed or depressed?

• Is there a support group I can join?

• Where can I find more information or resources?

Congratulations!

You have successfully completed the program Treating Your Hidradenitis Suppurativa (HS).View Additional Materials on this topic that you may find useful:

Hidradenitis Suppurativa -- US National Library of Medicine

National Institutes of Health: Hidradenitis Suppurativa (HS)

About HS

HS Diagnosis and Treatment

Hidradenitis Suppurativa (HS): Diagnosis, Treatment, and Steps to Take