What to Expect with Hidradenitis Suppurativa

Hidradenitis suppurativa (HS) is different for every person, so it can be hard to predict exactly what it will be like. But along with your treatment plan, there are some good ways to manage the condition. It helps to know how the disease can affect your life, so you can make changes that will help.

How long will I have HS?

There’s no cure for HS, so you’ll have to manage the condition for life. For most people, it’s a cycle of flare-ups and periods when their skin is clear.

Breakouts tend to happen in the same general areas of your skin. But you may have a spot that stays broken-out all the time.

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Some women find their HS clears up after menopause.

Will it get worse?

HS is called a progressive disease. That means it often gets worse over time. A small pimple can turn into a large boil within days or hours. If the boil ruptures underneath the skin, inflammation and infection spread quickly and new lumps form nearby. A flare-up may last a week or two.

But treatment can keep HS from getting worse and help you avoid the most serious symptoms. The key is to start it early.

How often should I see my doctor?

Your symptoms and the way your body responds to treatment will determine how often you see your doctor. You may be able to manage mild symptoms on your own. If you take a drug that’s injected or delivered through a vein, you may need to go in regularly.

Will it lead to other health problems?

People with HS tend to have other conditions, too, such as severe acne, arthritis, heart disease, diabetes, obesity, and inflammatory bowel disease. Doctors don’t know exactly why these conditions are linked. But it may be that whatever causes HS leads to other problems, too.

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It’s rare, but people who have HS for a long time may be more likely to get a type of skin cancer called squamous cell carcinoma.

Will I have pain every day, or only during a flare?

It depends on how severe your condition is. Large, deep nodules or lumps can hurt. And depending on where they are, you may not be able to sit or walk normally. Some people only get these painful lumps from time to time when the disease flares. But for others, the bumps or lumps never completely go away.

Whether you have pain only during flares or more often, your doctor can help you control it. You may get numbing creams or over-the-counter or prescription pain medicine.

Will I smell bad during breakouts?

The lumps themselves don’t smell, but the fluid inside them does. When they burst and leak, the odor can escape, too.

Wear loose clothing and try to keep things from rubbing against the cysts. Don’t squeeze them. If they do burst, wash the area gently with an antiseptic cleanser to get rid of the smell. Antibiotics may also help.

How often will I have flare-ups? Is there a way to prevent them?

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HS can be unpredictable. You may have a flare-up every few weeks, or you may go months with clear skin. Some women find they have breakouts before their periods. They may go away while you’re pregnant or breastfeeding.

There’s no sure way to prevent breakouts. But they may not come back as often or be as bad if you follow your treatment plan, take any medication your doctor prescribes, and make some changes to your lifestyle.

  • Get to a healthy weight. HS is closely tied to obesity. Losing weight is one of the best ways to keep it under control.
  • Quit smoking.
  • Stay cool. Your HS may get worse in the summer, when heat and sweat can trigger a flare-up. Swimming is a good way to get exercise without overheating.
  • Don’t shave near a breakout. If your razor irritates your skin, laser hair removal may be a better choice.
  • Watch what you eat. There’s some evidence that it may help to cut dairy and sugar from your diet. Ask your doctor if you should try it.

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