About Hidradenitis suppurativa
In this section, you or a loved one can find out more about medical treatments and alternative therapies for hidradenitis suppurativa (HS), pronouned Hy - dra - den - ay - tis - Soup - yer - ah - tee - va. Perhaps most importantly, it emphasizes the importance of having a network of people in your life (and online) who are informed, supportive and understanding. This section also includes practical suggestions that may make it easier to live well with this condition.
What is hidradenitis suppurativa
With a name like hidradenitis suppurativa, it’s perhaps not immediately obvious what kind of condition it is.
“Hidradenitis” is a Greek word that means “inflammation of the sweat glands” and “suppurativa” means “pus -forming” which can be a more severe symptom of the condition.
Hidradenitis suppurativa (HS) is a chronic , long-term skin disease. It causes swollen, red lumps under the skin (sometimes large abscesses) that are often very painful, sore or tender and which sometimes leak pus , which can create an unpleasant-smelling odour. In HS, these lumps tend to grow around the armpit and groin/genital areas, but it’s also common for them to grow under the breasts, on the buttocks and/or on the inner thighs.
The soreness, inflammation and pus from hidradenitis suppurativa may resemble “bad” pimples, and the lumps may look and feel like deep acne cysts (hard, non-cancerous growths under the skin). But HS is not acne , it is an entirely different condition.
Hidradenitis supparativa 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.
What causes hidradenitis suppurativa?
The exact cause of HS is unknown. This disease involves the plugging of the hair follicles where apocrine sweat glands are present.
Though the exact causes of hidradenitis suppurativa (HS) remain a mystery, it seems specific defects within hair follicles may be responsible for its symptoms. It is not an infectious disease, nor is it a condition related to poor hygiene.
Areas where we have apocrine glands, such as the armpit and groin, are where HS lesions tend to occur. Recent research suggests that the lumps, boils and inflamed skin develop when sweat gets trapped inside the sweat gland tubes inside hair follicles that are connected to apocrine glands.
When sweat becomes trapped, it builds up in the hair follicle , swelling under the skin until it bursts. Sometimes the trapped sweat mixes with bacteria in the hair follicle and an intensely painful abscess (an infected boil ) is formed. The abscess might grow until the skin above and around it becomes very inflamed and painful. This kind of lesion often eventually bursts as well.
Although HS can be seen on the surface of the body, it is actually an inflammatory disease . This means that an irregularity in the person’s immune system – a poorly understood quirk – is causing the disease and the skin irregularities.
People with HS often worry they might pass the disease on to someone close to them. Rest assured, this cannot happen – HS is not an infectious or contagious disease. It is a genetic disorder. People with HS can have normal and close contact with others, including sexual intimacy, kissing, touching, sharing meals, or breathing the same air, with no danger of HS spreading from one person to another. It is also important to remember that HS has nothing to do with poor hygiene – a common misconception about the disorder.
Though the exact causes of HS remain unknown, there are some risk factors associated with this disease:
- HS can occur at any age but is most common in people in their early 20s
- Risk of HS drops off after ages 50 to 55
- Women are 3 times more likely to develop HS than men
- Research shows HS may run in families
- About 1 in 3 people diagnosed with HS have a family member who has it too
- Because the condition is more common during the reproductive years, researchers think HS might be connected to sex hormones. No evidence of a direct link between the two has yet been proven, however
Medical research also shows that smoking and obesity seem to put a person at greater risk of developing HS. However, researchers still aren’t sure whether it is obesity that can lead to HS, or the reverse.
Some of these risk factors for HS, such as smoking, obesity, hormonal changes, and excessive perspiration, may actually worsen symptoms in people who already have the disease.
- Hidradenitis suppurativa (HS) involves the blockage of the hair follicles where apocrine sweat glands are present.1
- The exact cause of HS is unknown.1
- HS is a chronic inflammatory disease : its symptoms are caused by irregularities in the immune system .2
- HS is not infectious : it cannot be “spread”, and others can’t “catch” HS.2
- HS is not caused by poor hygiene.2
- 30% of HS sufferers have or have had a family member with the condition.2
- There is no widely accepted diagnostic blood test for hidradenitis suppurativa.3
- HS can occur at any age, but symptoms of the condition are 3X more common in women and most commonly begin in young adults in their early 20s. Few people develop HS after the ages of 50 to 55.4
- HS can continue to reappear and grow more severe if not properly managed, so it’s important to diagnose and properly manage the condition as early as possible.5
- Because HS is not a widely known disease, it is recommended that you consult a dermatologist with any questions you have.2
What are the effects of hidradenitis suppurativa?
Hidradenitis suppurativa (HS) can be painful, leave scars, and because it sometimes impacts mobility it can prevent normal activities. Mobility can be affected because of acute pain around the groin area for instance, or scarring under the armpit could modify the extension/raise of a person’s arm . The amount of skin affected by HS and the level of discomfort and skin damage it causes can differ from one person to another.
Initially a firm, pea-sized nodule (0.5-1.5 cm in diameter) resembling acne may appear in one place. A lesion like this may go away by itself or may grow, burst and, within hours or days, release a pus -like fluid. The inflamed, broken skin of these lesions may heal without treatment but new lesions might form later in an area nearby. This “flaring” process is hard to control and may lead to larger lesions (golf-ball size) and tunnels that form under the skin (sinus tracts), which connect abscesses or infections that are in different locations.
Dermatologists typically assess the severity of HS by rating its signs and symptoms on a scale called the Hurley scale, below.
One or a few separate boils on the skin’s surface and below it. There are no sinus tracts (connecting tunnels under the skin) and there is no scarring.
- Painful bumps and abscesses in the armpits, groin, undersides of breasts, buttocks or inner thighs
- These tender bumps generally start as firm, pea-sized nodules.
- Since they are typically red, the nodules are often mistaken for acne , an ingrown hair, or a sexually transmitted infection , such as herpes .
Recurring boils in multiple areas with scarring and tunnels connecting the boils under the skin (sinus tracts)
- Scarring can occur with HS as a result of long-term or repeat occurrences in a single location.
Widespread boils (some as large as golf balls) with multiple tunnels connecting them under the skin (sinus tracts). These may lead to severe scarring and release unpleasant-smelling pus
releases from skin abscesses
- The painful abscesses heal on their own or rupture, discharging pus that often has an unpleasant odour.
Not all cases of HS are progressive (increase in severity over time). However, sometimes HS lesions come back in the same place or nearby many times, becoming more severe as they recur. That’s why diagnosing and properly managing HS as early as possible is so important.
If someone is showing symptoms of HS, the best first step to take is to see a dermatologist . This medical specialist is expert at detecting subtle differences between skin diseases that look alike. A dermatologist ’s exam increases the likelihood that a first diagnosis will be accurate.
If you or a loved one has or suspects HS, it’s crucial to find a doctor you are comfortable with and with whom you can have an open, honest dialogue. HS is not a widely known disease, and it is a painful, chronic condition that is sometimes not easy to talk about – a dermatologist will be both knowledgeable and understanding.
Hidradenitis suppurativa (HS) commonly occurs around hair follicles where many oil and sweat glands are found, and where skin rubs together, such as:
- around the groin and genitals
- in the armpits
- near the anus
- on the buttocks and inner thighs
- under the breasts
The condition may spread to the nape of the neck, or where the waistbands of pants and skirts sit, and the inner thighs. HS lesions have been known to occasionally appear on the front or back of the legs, on the sides of the torso, on the back, or on the face.
This diagram shows where hidradenitis suppurativa (HS) bumps, sores and inflamed patches of skin usually appear on the body. HS can affect a single area or multiple areas of the body at once.
Are there other associated conditions?
Though it affects the skin, hidradenitis suppurativa (HS) is an inflammatory disease , which means people with the condition have irregularities in their immune system . Immune system issues can increase the risk of other inflammatory diseases – consequently there are several conditions associated with HS, including:
- Arthritis : Arthritis causes pain, redness and swelling in the joints, and usually gets worse with age. At least 16.6% of adult Canadians have arthritis . People living with hidradenitis suppurativa are more likely to have arthritis than the general population.
- Crohn’s disease
: Crohn’s disease
is an inflammatory disease
of the digestive system that causes irritation of the gastrointestinal (GI) tract. Crohn’s most commonly interferes with functioning in the last section of the small intestine
(ileum) or the large intestine
) but digestive problems may occur anywhere from the mouth to the rectum
from Crohn’s can damage sections of the GI tract over time, resulting in other problems, such as narrowing of the colon
Nearly one-fifth of patients living with hidradenitis suppurativa may also have Crohn’s disease .
- Depression : For some people, hidradenitis suppurativa can have a very negative effect on their quality of life. Living with HS can sometimes be extremely uncomfortable and demoralizing, and evidence suggests that many people with HS become depressed at some point in their lives. Depression is a medical condition that causes a prolonged feeling of sadness or hopelessness that can cause eating or sleeping difficulties and loss of interest in activities the person once enjoyed. The severity of symptoms is different for different people.
- Malignancy: People with HS have a higher risk of cancer compared to the general population, and are specifically more likely to develop cutaneous squamous cell carcinoma (skin cancer), buccal cancer (cancer of the mouth) and hepatocellular cancer (liver cancer .)
- Severe acne : The blemishes of severe acne include deeply embedded solid nodules (hard lumps deep in the skin), inflammation and extensive skin damage. The skin with such acne may become infected. If these infections are not treated properly, the skin may scar as the blemishes heal.
People with hidradenitis suppurativa are more likely to have or to have had severe acne . Because HS can look a lot like severe acne , which is also more common, doctors and patients alike may think the problem is severe acne alone, when in fact HS is the issue along with severe acne .
If you are living with any of these associated conditions, your dermatologist or doctor may refer you to other specialists such as rheumatologists, oncologists, psychiatrists, gastroenterologists, etc., for the help they can give you with their respective expertise.
Support means everything
No man is an island: in other words, it is not helpful to try to live with hidradenitis suppurativa all by yourself. It is normal for anyone living with a chronic disease to feel isolated sometimes – especially when you have to adapt your routine to your symptoms or their effect on your daily life; when you have to see doctors more often than other people do, or learn a lot of new medical information. It may seem difficult at first, but if you suspect that you or a loved one has HS, it’s essential to discuss the symptoms with a medical professional. Seeking help will not only reduce the physical discomfort, it can be very empowering to talk openly about any physical or emotional issues associated with the condition.
Over time, there can indeed be challenges for a person with HS. There may be physical discomfort to deal with; bouts of loneliness, depression , frustration and worry about sharing life with others. But friends and family can help, along with your team of health care professionals. Speak up and ask your doctors and nurses whatever you want to know – their expertise can be a great help. Tell the people you trust how you’re feeling and don’t be embarrassed to accept their help or comfort. It’s only human to need frequent, nurturing contact with each other – the people you care about should continue to enjoy spending time with you. Remember: HS is not contagious , nor is it the result of poor hygiene. When you’re ready, you can help inform people about HS and make life better for others living with it too. Try not to hide yourself away unless rest and solitude is what you really need.
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.
If you have hidradenitis suppurativa (HS), there are many things you can do in your everyday life to reduce your symptoms and the extent they limit your activities or affect your mood. Things that really help: try to keep your skin cool; lose any excess weight; get help to stop smoking if you smoke; be gentle with skin that’s sore or bumpy; wear loose-fitting clothes, and practice relaxation techniques. All these things may help you feel better when your skin is flaring up. Dermatologists have found that patients who make some of the suggested lifestyle changes tend to have fewer flares and less severe HS.
These tips can help patients who have HS, but HS affects different people in different ways. If these changes don’t immediately benefit you as much as you’d hoped, keep in mind that inflammatory disease flares can be unpredictable and you might see the benefits only over a longer period of time. There are other things that may work – ask your health care professional for advice and other suggestions if these don’t seem to be helping or don’t feel right for you.
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.
Complementary therapy options
At-home trick to help get immediate pain relief from a painful deep lump from HS:
Make a hot compress, as hot as you can bear. Run a clean washcloth under hot water, and place the hot compress on the affected area for about 10 minutes.
The heat can bring immediate pain relief, but it won’t get rid of the cyst or nodule .
In many cases, treating hidradenitis suppurativa (HS) can be tricky. Many things may not work or offer the extent of relief patients and their health care teams hoped they would. Some treatments work well at some times but not as well at others. That’s why some people with HS look to complementary and alternative therapies (treatments that fall outside the scope of traditional Western medicine). For some, these less common techniques and preparations may work well for relieving pain, and in clearing or reducing breakouts and preventing new ones. Ask your health care professional about alternative therapies – there are many you can try.
- 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.
There is no cure for hidradenitis suppurativa (HS), but early treatment can help manage the symptoms and may prevent new lesions from developing.
The purpose of HS medical treatments is to:
- Try to clear or reduce breakouts
- Try to prevent scarring and tunnels beneath the skin
- Try to prevent new breakouts
Treatments depend on the size of the affected areas and whether the sores are painful or infected. Mild cases might be controlled and relieved well enough with self-care measures like warm compresses and regular washings with antibacterial soap, while moderate cases may require topical medications (those applied to the sore or damaged skin) and/or oral medications (those taken by mouth). It is important, however, to remember that each case of HS is as unique as the person who has it. The length and course of treatment(s) may be different for each individual.
Health Canada has not yet approved a specific drug for the treatment of HS, but dermatologists still have many medications they frequently use to treat it, and have in-depth knowledge about these medications they use so extensively.
No one treatment works for everyone who has HS. One may even work for a while and then stop working, so you will likely need to try a few different therapies or combinations before finding one that works well for you long-term. Your dermatologist may include one or more of the following in your treatment plan, and can explain the differences, benefits and side effects of each.
Many types of medications are used to treat hidradenitis suppurativa. All of these treatment options must be validated and discussed with your doctor.
Nonsteroidal anti-inflammatory drugs (NSAIDs) are a class of medications that can be used to treat the pain and inflammation of HS. NSAIDs do not control the disease, they only treat symptoms. That’s why they are taken on an as-needed basis.
Your doctor may recommend an NSAID to reduce swelling and relieve pain. Your skin may begin to clear and hurt less within a few weeks.
There are many NSAIDs available, including prescription and non-prescription types. All NSAIDs have an anti-inflammatory effect. Each person reacts differently to different drugs, so you may find that one NSAID helps you more than another.
The most common side effects associated with NSAID use are indigestion, heartburn, stomach and abdominal pain. They can also alter the protective lining of the stomach and the rest of the digestive system, making you susceptible to ulcers and bleeding, so you should not take more than two different kinds of NSAIDs together.
COX-2 inhibitors are custom-designed types of NSAIDs that minimize the risk of ulcers and bleeding. People with heart disease, or a history of stroke or chest pain, should not take NSAIDs. If your doctor discusses using NSAIDs be sure to tell him/her if you have or have had kidney, stomach or heart problems.
Long-term use of antibiotics may help prevent your HS symptoms from getting worse and lessen the chance of future lesions breaking out. These drugs come in pill form or in creams or ointments to apply to skin inflamed by HS.
Topical anti-acne antibiotics and benzoyl peroxide. Antibiotic creams and ointments kill bacteria on the skin, as does benzoyl peroxide. Benzoyl peroxide also offers the added benefit of drying out oily or weeping skin, and it helps the dead top layer of dried skin to shed, which helps keep hair follicles and other pores from clogging. Talk to your doctor about whether these treatments are right for you.
Short courses of antibiotic tablets. Oral antibiotics can be used when there are new abscesses (red, hot, painful lumps with discharge.) The aim is to try to stop the infection from spreading and to help the abscess heal more quickly. A short course of antibiotics is usually about two weeks long.
Prolonged courses of antibiotic tablets. These are antibiotics taken for longer than a few weeks, usually used to reduce certain bacteria and inflammation . Three-month courses of a combination of 2 types of antibiotics can sometimes be the most effective medical treatment in severe cases.
Before starting an antibiotic, always read the leaflet included in the packet, or talk to your doctor and/or pharmacist about what to do and not do while you’re taking these drugs. Precautions and possible side effects vary among different antibiotics . Also, if you are allergic to penicillin or any antibiotic be sure to tell your doctor.
Cortisone and other steroids are something the body produces naturally to regulate inflammation . Because they work fast, doctors give corticosteroids to patients with particularly severe and painful symptoms of HS. These drugs may reduce severe inflammatory lesions. They provide the same kind of relief as NSAIDs, but are stronger, and are not meant to be relied upon for frequent symptom relief over the long term. Corticosteroids can have severe side effects, so they are usually taken for limited periods of time, often to relieve patients’ severe symptoms while waiting for slower-acting medications to take effect.
Corticosteroids can be injected right into inflamed skin; given via an intravenous drip, or taken orally. Side effects of oral corticosteroids include facial rounding (swelling of the face), fluid retention, fatty deposits in arms, legs or back; increased appetite and weight gain; difficulty sleeping; acne ; hair growth; blurry vision; increased blood pressure; increased blood sugar levels, and mood swings. As the dosage is decreased or stopped, these side effects lessen and disappear.
In very severe cases of HS, the use of biologic response modifiers, or “biologics” have shown promise. Biologics are medications specifically designed to target your body’s immune system – they work by decreasing the body’s immune response.
Although biologics may help severe cases of HS, your dermatologist will usually only prescribe a biologic if other treatments have not worked for you. And due to possible serious side effects, it is very important for you and your doctor to carefully weigh the risks and benefits of using them.
Common side effects with biologics include mild skin reactions at the injection site, nausea, abdominal pain and headaches. People who take biologics may develop serious infections, lupus -like reactions, nervous system diseases, and cancer, but these side effects are rare. Biologics are not for pregnant or nursing women, or for people who have had multiple sclerosis or cancer. Tell your doctor if you have had these or tuberculosis , hepatitis B , or any infections other than HS ones that came back in the same place.
Biologics are administered in two ways: by infusion (through an IV, usually over a few hours) or by injection. Your doctor can give you information about these and help you make a choice that’s right for you.
Understanding biologic and biosimilar medications
Most people are familiar with conventional medications such as pain relievers. These medications are made from chemicals (chemically synthesized).
Some of you may also have heard about biological or “biologic” medications which are used to treat serious illnesses, such as cancer, inflammatory bowel disease, psoriasis and rheumatoid arthritis . Biologics are special medications created using the biologic processes within living cells.
Conventional medicines and biologic medicines have important differences.
|Conventional medicines||Biologic medicines|
|Made from chemicals||Created in living cells|
|Generally small molecules||Complex large molecules|
Some history on biologics…
It is common knowledge that when the patent expires on a conventional medication, other companies are allowed to make copies called generics. Although the active ingredient in a generic is exactly the same as the active ingredient in the original conventional medication, non-medicinal ingredients, like fillers and colouring, may be different.
When the patent on a biologic medication expires, other companies are allowed to make copies. However, since it is impossible to make exact copies of biologic medications because of the way they are made, the copies are not called generics or even biogenerics. The correct term is biosimilar since it can only be similar and not identical to the original. In Canada, the official term for a biosimilar medication is Subsequent Entry Biologic or SEB.
Is a biosimilar a generic version of the original biologic drug?
No, biosimilars are similar to, but not identical to the original biologic drug. This is because the group of cells used to produce the drugs (the cell line), the actual drug molecule and the manufacturing process are different.
In Canada, manufacturers of biosimilars are required to show Health Canada that their product is similar to the original biologic and that the benefits of their product outweigh the risks. SEBs must have a label that is different from the original biologic medication.
Does the difference between a biosimilar and the original biologic matter to me and my care?
Yes, original biologics and biosimilars may act differently in your body and could have different side effects.
Since original biologics and the biosimilar versions are not identical, it’s important that you review your prescription with your doctor so you know which one is being prescribed.
Health Canada does not support automatic substitution of a biosimilar for an original biologic at the pharmacy.
For more information about biosimilar medicines, visit:
Alliance for Safe Biologic Medicines (USA) www.safebiologics.org
Metformin belongs to the class of drugs called the biguanides. Usually used to treat type 2 diabetes , it is being investigated by doctors on its benefits for people who have hidradenitis suppurativa (HS). When this medication is taken over a long period of time, it may help reduce the number and severity of inflamed HS nodules, and may help improve quality of life.
It is suggested that the positive effect of the medication on HS is due to how it counteracts the effect of male sex hormones, such as testosterone, on the skin. Or the benefit could be due to its various effects on the metabolic system.
Medications for diabetes can cause changes in the body’s blood sugar levels. If you take them for HS you should learn about the symptoms of low and high blood sugar and what to do if you have these symptoms.
Some women with HS may get some symptom relief by taking birth control pills, which regulate hormones. For a woman, “The Pill” may decrease the pain and the amount of fluid that drains from her breakout lesions. Oral contraceptives may need to be taken for up to one year before seeing any improvement in HS symptoms. Certain birth control pills diminish some of the effects of so-called ”male hormones” (which in fact both genders have, in different proportions) such as skin oiliness and spots, and these are the types of birth control pills that may improve HS symptoms in women.
Not all women can safely use oral contraceptives. They can cause serious side effects in some women. Your doctor can discuss with you whether it is safe for you to use “The Pill” and, if so, which kind would be best for you and treating your condition.
If your HS doesn’t respond to other treatments, your doctor may recommend using a drug from the retinoid family. Vitamin A-based retinoids have shown promising results in HS. It’s not known exactly how retinoids work, but they can stop the secretion of oils from glands and can help dead skin cells shed normally in the hair follicles, preventing the blockage of pores.
With retinoids, symptoms usually return once a person stops taking them. Common side effects are dry skin and mucous membranes, itching and hair loss. Women must avoid pregnancy for at least three years after taking retinoids as they can cause severe birth defects.
Remember, any of these medications must be first validated by your doctor. Be sure to have an in-depth discussion with your doctor to design an overall, long-term management plan for your HS.
Please note that the information on this Web site should not be used as a substitute for seeking medical advice or treatment from a physician. You should not use this information to diagnose or treat a medical condition or health problem. Speak to your health care provider if you have any questions about your medical condition, symptoms or treatment options.
The Canadian Skin Patient Alliance (CSPA) is a national non-profit organization dedicated to advocate, educate and support Canadians living with skin diseases, conditions and traumas. Their mission is to promote skin health and advocate for best treatment options for all skin patients.
HS Aware is an association that aims at increasing disease awareness among patients, both diagnosed and undiagnosed, health care professionals, caregivers, policymakers and other stakeholders.
The American Academy of Dermatology has been leading the way in dermatology for over 75 years. It is the largest, most influential and most representative dermatology group in the United States.
The Hidradenitis Suppurativa Foundation is a nonprofit public benefit organization dedicated to improving the quality of life and quality of care for individuals and families affected by hidradenitis suppurativa.
Founded in 2011, the HS Institute was the first to recognize the need for a center devoted to the care of HS. This hospital provides first-class compassionate care, acts as an education resource for patients, physicians, and the general community, and fosters research into the causes and treatments for the disease.
HS Trust is a UK charity dedicated to raising awareness, understanding and support for this chronic , debilitating skin disorder. They aim to increase public knowledge and educate the medical profession on the symptoms, severities and treatments of HS.
The information in this Web site is not medical advice – it was created to enable people facing life challenges to simply and easily communicate their progress with friends, family and supporters, and have those people respond with encouragement and help. They can also find others in the same circumstances, and exchange experiences, treatments and even hugs within a safe community setting.