Hidradenitis suppurativa

Hidradenitis suppurativa lumps usually appear on the skin where apocrine glands are found. HS lumps are especially likely to form wherever these glands are located, and where the skin is also creased or rubs together. HS is thought to be a disease involving the hair follicle.

Everyone is different. One person’s HS symptoms may not be just like those of another person who has it. There are, however, signs of the condition most people with this disorder will have at one time or another: inflamed (red, sore and swollen) areas of skin that have painful lesions, nodules and boils in them. Depending on how severe HS is, the sores in these areas may hurt (particularly when they are pressed), sometimes hindering movement; they may leak pus, they might be itchy, and scarring can also occur.

HS varies from mild to severe. Mild cases of HS can consist of tender small bumps, blackheads or a few cysts. In more severe cases a person can have painful, recurring abscesses that can burst or leak liquid. An unpleasant smell can accompany these leaking lesions.

Hidradenitis suppurativa is considered a rare disease, but it affects an estimated one in every 100 people around the world. Exactly how many cases there are is hard to determine – isolation is a trademark of HS. Many people are likely dealing with HS on their own because they don’t feel comfortable talking about their symptoms with their regular doctor, and they don’t have a dermatologist. Milder forms of the disease can also be misdiagnosed, mistaken for something else for years.

There is no cure for HS, but appropriate treatment can help people with HS enjoy periods of time with few or no symptoms. Hidradenitis suppurativa is a chronic, long-term condition that needs to be managed properly. HS tends to flare repeatedly and become more severe if not treated, so a proper, early diagnosis for you or a loved one is extremely important for longer and better relief of HS symptoms.

If you suspect you are suffering from HS we recommend you see a dermatologist. These skin specialists are most likely to know how to correctly identify the condition and have the most experience treating it.

HS can be a very uncomfortable and challenging disease, both physically and emotionally. It can seriously impact a person’s life, so it’s crucial to reach out and get help and information, take charge of your disease and aim for the best medical support and treatment. Once you make your emotional and physical wellbeing a priority you can ask for help and support when you need it, and nurture relationships with compassionate people who enrich your life. You don’t have to do it alone – there are many things you can do to make living with HS easier, as you’ll see in the following sections.

When you have hidradenitis suppurativa, it’s essential to keep the lines of communication open – with your family, friends and even trusted coworkers. You can help them understand what it’s like to live with HS and what can help you feel better and live life more fully. Strive to talk openly about it – especially with the people you like, and who make you feel you can safely be yourself.

Here are some tips and helpful insights we’ve learned from patients:

• Ask those closest to you to learn about your condition. They’ll understand your symptoms better and how you feel about them. It may give them new ideas about how to make things easier for you in day-to-day life, and the awareness alone will make you all more comfortable dealing with HS. Mutual understanding often arises from education – friends and relatives can read this or other Web sites, look up reliable sources of information in libraries, or go with you to some of your appointments. Contacting the Hidradenitis Suppurativa Foundation is another option.
• Let them know you need their support. This could be just some welcome empathy when you need to talk – even about things not directly related to HS. Nourish your important personal relationships – share how you are feeling physically and emotionally. There will be times when you experience more pain and limitations, and are frustrated. But at other times you’ll feel so good you won’t be thinking about HS at all. Because inflammatory diseases like HS tend to flare and subside, life is full of unpredictable ups and downs – ‘good’ and ‘bad’ days your loved ones should know about so they can offer you support if and when you need it.
• Always be open and honest about your HS. It’s the only way people can help you. Search out proper medical support and try not to let HS dictate your life. And if you’ve ever concluded that your doctor or loved ones aren’t doing enough because “They don’t know what it’s like”, perhaps that’s because you haven’t fully told them. Help them to help you by letting them know what you’re experiencing and what you want and need from them.

When we stop doing the things we love, our mood drops, pain feels more intense, and it becomes even harder to get motivated. Keeping fun in your life is absolutely essential – make it a top priority. It boosts your mood, your relationships, and your energy level. Doing harmless things you enjoy “just because” is good for your health. Find one activity you love – even a simple or small one that takes little time – that without fail you can make part of each week, and another you can do every day. This might be something you do alone, like a long walk in nature or around the neighbourhood. Or something you do with others, like an acting or woodworking class, or a book club. Cultivate special things you really enjoy. Once these become routine, you’ll start feeling better and will want to add new ones to your schedule.

Hidradenitis suppurativa is different for every patient, with treatment tailored to each individual case. The key is to closely follow your health care team’s instructions for the steps and medications to take. Be persistent in following your treatment, and be patient: it can take a while for some medications to work. Keep notes and communicate regularly with your doctor about your progress and the effects of your treatment. If you feel there’s a problem with your regimen, or are experiencing any side effects, talk to your doctor right away about trying something else. Don’t hold back from asking questions. Be pro-active and involved in the decision-making about your health – there are many things to try, so don’t be discouraged if one treatment isn’t working – another one might work much better.

Your body overheating and sweating a lot can cause HS lumps and inflammation to flare so if at all possible try to stay away from hot, humid places. This might mean avoiding sitting next to the fireplace, prolonged sunbathing, or intense bursts of exercise in the gym.

If you need a product that can help reduce sweating, such as an antiperspirant, ask your dermatologist for a recommendation. The ingredients in some antiperspirants are too harsh on skin affected by HS.

It’s unconfirmed whether hidradenitis suppurativa is more the cause of excess weight or an effect of it. So far it has conclusively been shown that people with HS are more often overweight compared to the general population. It seems the severity of HS symptoms usually increases in proportion to how overweight a person is, so getting the help and support needed to get to a healthier weight may be even more significant for people with HS.

Friction where skin rubs together increases perspiration and bacterial growth, which can aggravate HS symptoms. Losing even a few pounds can decrease the number of areas where skin is rubbing together and its intensity, which can result in fewer painful boils and inflammation. In fact, dermatologists have found that when HS patients lose weight, they have fewer flares, and losing just 10% of body weight makes a difference and enhances quality of life. HS also increases the risk of developing other health problems like heart disease and diabetes, and the risk of having a stroke. A healthy weight with a well-balanced diet of vegetables and fruits, healthy fats and modest amounts of protein can reduce these risks and contribute to a healthier life overall.

Light exercise you can do regularly can also contribute to weight loss. But many types of exercise for fitness and weight control are not ideal for people with HS, as sweating tends to make HS symptoms worse. Experts suggest that swimming may be a good option, and while abscesses, boils and/or scars could make you hesitant, it’s worth the effort. Swimming gets the body moving in a vigorous way; it improves strength and cardiovascular fitness; energetic swimming burns a lot of calories; there is less rubbing of limbs and, where there is rubbing, the water acts as a lubricant. Water also keeps your skin cool and the chlorine in pool water may be helpful in drying skin out – a good thing for many people with HS.

For extra motivation, instruction and support on diet and fitness, talk to a dietitian about meal planning, and to your doctor or a movement specialist (e.g., kinesiologist) about a suitable exercise plan that could work for you. Be sure to tell them about your condition, so they can design food and exercise regimens that will make it easier and more enjoyable to get to a healthy weight and stay on track.

Though medical research has established a link between hidradenitis suppurativa and smoking, there is debate as to whether it tends to be smoking that leads to HS, or if it is HS (and associated conditions like depression and a lack of exercise) that makes people more likely to smoke. However, while quitting smoking will not cure your HS, it can definitely improve your overall health. It is also likely to reduce HS flares and decrease its severity.

Today, there are many good smoking cessation aids and techniques. If you smoke, talk to your doctor about finding a program to help you quit and ask others around you how they successfully took this life-changing step.

The following suggestions may help relieve soreness, speed up healing and prevent any skin infection from getting worse or spreading:

• Avoid wearing perfume or perfumed deodorants in the places your skin gets lumpy and sore.
• Stop shaving where you have breakouts, as it can irritate the skin. If you want to remove hair, ask your dermatologist what you can safely use.
• Make a habit of frequently and gently washing the places you have flares with antibacterial or antiseptic soap or shower gel. This will rid the skin of germs (bacteria). (Note: We all have harmless bacteria living on our skin. This is normal. Having too much bacteria is what we want to avoid – especially with HS.)
  • Antibacterial/antiseptic washes will not cure your HS but they are a good option to help sores drain and heal faster. After washing, it may help to apply an over-the-counter antibiotic. To be sure it is right for you, always check with your doctor or pharmacist before applying any type of cream.

Try to wear clothes that will reduce friction against the skin where you have recurrent flares – for example, avoid tight waistbands and form-fitting clothes that rub against your skin. Opt for clothing such as boxer shorts, avoiding underwear or anything else with seams that rub where lesions tend to appear. Also choose clothing that is cooling as well as loose so you don’t overheat and sweat as much in those areas.

Loose-fitting clothes and underwear made of natural fabrics like cotton tend not to irritate skin, while tight, synthetic or wool clothes might, so avoid them if they are uncomfortable or make your symptoms worse.

Stress management methods may be useful because HS can be aggravated during times of increased stress. First identify your stress triggers, and then develop relaxation and coping skills that can improve your overall wellbeing and give you a greater sense of control over your HS and your life.

The painful episodes and emotional issues caused by HS can be exhausting. Physically, your body is continuously fighting pain and infection, which in turn can be very hard emotionally. It isn’t realistic to eliminate all stress from your life, but even a little more relaxation and inner calm may help a great deal and is worth pursuing. Talk to your doctor, a counsellor or medical social worker, all professionals who can offer ideas and techniques as to how you can incorporate more downtime, rest and peaceful moments into your daily life. An online HS support group can be an excellent source of strength and fellowship, where you can open up and exchange freely with people who know exactly what you’re going through and who may be able to share some inspiration and insights for living better with the disorder.

• Wet a washcloth with very warm water and hold it as a compress over a problem area. This may reduce swelling.
  • You can try holding a hot, wet washcloth (as hot as you can stand), against boils to encourage their pus to gather together under the skin so they may come to a head where the skin is thin enough to break and start draining. This is good because a boil that is leaking/draining hurts less than a hard abscess full of pus that cannot yet come out.

Zinc supplements taken daily may help reduce inflammation and prevent new outbreaks. A pilot study (Brocard A, et al. Dermatology 2007;214(4):325-7) showed that zinc salts could be a new way to help reduce hidradenitis suppurativa (HS) symptoms. This new treatment was tested with 22 patients who had mild to moderate HS. Study patients were treated with 90 mg of zinc gluconate per day (15 mg zinc, 6 times per day), and if the zinc helped, their dose was gradually decreased to 15 mg zinc, 3.5 times per day. Before taking zinc supplements talk to your doctor about whether the treatment is right for you – you need to be sure it doesn’t interfere with any other treatments you are receiving.

You and your doctor may consider surgery if medical therapies are not working well enough for you. Long-standing, severe and persistent hidradenitis suppurativa (HS) often requires surgery at some point. The operation is usually performed under general anaesthetic. Which kind of surgery is best for each individual with hidradenitis suppurativa depends on how severe and how widespread the person’s HS lesions are.

There are several surgical options for HS. They include:

• Incision and drainage. Surgical drainage may be an option when the HS boils are in a single small area. During the surgery, the dermatologist will drain one or two, or cut them out. This procedure is generally for people with mild HS. Antibiotics are usually prescribed afterwards. This procedure can offer short-term relief, but the HS symptoms may return.
• Laser surgery. This treatment shows promise. Some patients’ lesions clear after several treatments. Lasers effectively clear new and deep HS breakouts. This treatment may be lasting in some people because it destroys the hair follicles that so often become plugged.
• Uncovering the tunnels. This procedure, also known as de-roofing, cuts away the skin and flesh that covers any interconnected tunnels linking separate lesions. This opening up can increase healing of the lesions and even minimize scarring. However, the disease may still return in the area treated or elsewhere on the body.
• Surgical removal. Surgical treatment of recurrent or severe symptoms involves removal of all involved skin. A skin graft (skin removed from another part of your body) or a skin flap (nearby skin that is pulled over to cover the wound) may be necessary to close the wound. Full surgical removal of skin prone to boils and painful lesions can prevent HS from coming back to the treated area, but it may still damage skin nearby.
• Carbon dioxide laser. Where available, and depending on the severity of the disease, cutting lasers can be used as an alternative to conventional surgery. This innovative new technique is more suitable for people with moderate HS. A carbon dioxide laser ‘vaporizes’ diseased tissue from the surface of the skin leaving an open wound, which is then left to heal. How long healing takes after the procedure depends on how large, deep and interconnected the treated lesions were. Staying in the hospital overnight is not normally necessary after this kind of surgery.

Ask your doctor if a surgical option could be suitable for you.