Hidradenitis Suppurativa (HS)
HS is a chronic disease that presents with sore red lumps that look like "boils". These very painful lesions are found under the arms and breasts and in the groin, buttock and around the anus, basically the follicles that are in the hot, moist, sweaty gland-bearing areas. These spots appear suddenly, increase in size rapidly and can then rupture sideways under the surface of the skin or drain to the surface. This condition is sometimes referred to as "inverse acne" because it presents like the severe cystic acne vulgaris usually seen on the face, chest and back in teenagers, with painful cysts, sinuses, blackheads and scars, but in unexpected (inverse) areas. It is more common in women than in men. The pattern of involvement varies from patient to patient.
What is the cause?
This condition develops due to blockage of the ducts leading to the skin pores. The pores are the tiny openings to the skin surface from the oil glands and hair follicles below. When the duct 'lining cells' block the ducts, a plug builds up in those blocked areas and starts expanding the duct, which leaks its contents, causing inflammation and irritation. The oil duct and hair follicle eventually explode sideways underneath the skin. The body develops a strong irritant and allergic reaction to this foreign material under the skin. The reaction is like that from a buried splinter or ingrown hair with the development of large, red, hot, painful swellings that eventually break down and drain pus, even thought this is not an infection. This problem can be hereditary, so ask other family members about having similar problems or "boils".
What are the factors that make this worse?
In addition to the family history, this condition is related to hormones. It commonly starts around puberty. It often gets worse each month with the menstrual cycle. Stress can be a factor. Friction in areas of involvement is often a problem. The walls of the pores or 'follicles' in the sweaty areas of the body seem to be "weaken" and easily rupture. Anything that rubs the areas (tight clothing, menstrual pads, etc.) can cause the plugged and swollen ducts to break down more easily. Try to avoid any friction or irritation. Squeezing these "boils" or "cysts" will always make things worse. Sweating can trigger a flare.
Is this an uncommon condition?
This is not rare. It affects up to 1 in 300 persons.
What does it look like?
First there are red, swollen, bumps that develop into "boils". These heal with pitted scars. The "boils" can be solitary, scattered in an area or grouped together. Blackheads may be seen. Some patients have 1-2 areas involved while others will have many areas extensively involved. The grouped lesions may form a large swollen area that is connected by small tunnels under the skin, called sinuses. If you press on any areas of involvement you can probably find pus coming out of openings nearby.
What does not cause Hidradenitis Suppurativa?
It is not due to infection or washing habits. It is not because one is overweight although this may make the condition worse because of increased friction or rubbing from clothes, especially bra straps and edges of underwear. Antiperspirants have not been shown to cause it. Smoking does seem to make things worse and it likely is an actual cause.
How is it diagnosed?
The diagnosis is made by recognizing the typical skin changes in the typical locations. The pattern of recurrent "boils" in these particular areas, especially when they do not respond to standard antibiotics, is a good clue.
Normal boils are caused by bacteria and respond quite well to antibiotics. Normal boils usually do not recur in areas after treatment. Normal boils 'point' and discharge vertically to the surface and do not make horizontal tunnels under the skin.
Why is this problem overlooked or missed?
By its nature, this is a hidden disease. There is not much research money for this condition, so there is very little research being done. Most medical students get little to no education on this subject, so many doctors simply are not aware of the diagnosis. Patients often suffer in silence due to embarrassment or previous misdiagnosis and treatment difficulties. This is not an easy condition to manage, so failures with old types of treatment were frequent and patients (and some physicians) sometimes gave up.
How is Hidradenitis Suppurativa treated?
Treatment depends on severity. Treatment may just involve medications that are used on the skin or taken orally. Long term and very low dose isotretinoin (formerly Accutane) or acitretin can help prevent new plugging. Surgery of various types is useful in all stages.
To decide the best treatment for you it is important to know how severe your problem is and this is done with a staging system that is referred to as Hurley's Criteria.
Hurley's Stage I - there are some abscesses ("boils"), one or several, but they do not have the small tunnels under the skin and scarring is fairly minor.
Hurley's Stage II - there are recurrent abscesses ("boils") with small sinuses under the skin and scarring. There may be one or several of these complexes scattered in different areas, or small groups of them.
Hurley's Stage III - there are large areas involved with multiple interconnected tunnels and tracks and draining lesions with a lot of scarring.
- It is important to reduce any friction in the areas where you have recurrent spots. Change to loose cotton clothing such as loose boxer shorts, avoid underwear with seams that rub in areas that give you new lesions. Try to wear clothing that is loose and cool so that you are not overheated and sweating in those areas. Take fresh underwear and a ZiplocR bag to work and change during the day.
- Wash all clothing, towels, pajamas, sheets, etc. in a laundry detergent free of enzyme. ALLR Free / Clear is the only one we know of.
- Try hard to reduce obesity and get down to ideal weight. The best diet is the Paleolithic diet (www.thepaleodiet.com) but the most important part is TOTAL avoidance of all dairy products, and a slow steady weight loss to ideal weight.
- Antiseptic washes can be helpful. These do not cure anything but can help in areas of odor and drainage. Use a triclosan-containing cleanser like DialR antiseptic daily. Otherwise use a mild soap-free cleanser such as DoveR For Sensitive Skin - Fragrance Free or CetaphilR Cleanser for Sensitive Skin.
- Stopping all nicotine from any source is essential. Nicotine stimulates plugging of the pores. Also, toxins in smoke appear to interfere with proper healing. We have never successfully cleared a smoker of this disease.
- For women it is best to block male hormones.
- This can be done using birth control pills (BCPs) such as Yasmin (or Ocella) or Yaz (or its generic)
- We can add an extra hormone blocker called spironolactone to the BCP.
- There are other male hormone blockers called finasteride and dutasteride but they are less used than the BCP blockers. (Pregnancy must be avoided with the use of hormone blockers). Dutasteride has made a big difference in some male patients.
- For men
- The male hormone blocker called dutasteride works well in men.
- To decrease inflammation, antibiotics are recommended.
- Antibiotics on the skin - 1% clindamycin lotion applied morning and night
- Antibiotics by mouth - antibiotics have traditionally been used for short periods of time or sometimes for weeks or months. Doxycycline, clindamycin, amoxicillin/clavulinic acid, Bactrim or combinations like clindamycin and rifampin are anti-inflammatory but are not capable of curing the disease because this disease is NOT due to infection.
- Zinc gluconate by mouth with food - 30 mg three times a day.
- For painful spots, an injection of cortisone called triamcinolone acetonide (KenalogR) may be used, and it may quickly take the inflammation down over 2-3 days.
- Oral cortisone (prednisone or medroxyprednisolone) may be given for short periods or intermittently to temporarily cool inflammation.
- For Hurley Stage II - systemic anti-inflammatory antibiotics are used as in Stage I, for weeks or months. Clindamycin may be combined with rifampin. Intralesional triamcinolone may be used. Dapsone can be very useful.
- Surgical unroofing is a simple, yet very effective technique that can stop forever the progression of the treated lesions. It is far more effective than prolonged antibiotics and anti-inflammatory therapy, which do not treat the cause. It is done in the office, under local anesthesia, and healing is usually complete in less than 14 days. Pain is usually controlled with Tylenol and antibiotics are not normally required.
- TNF blockers: these medicines block TNF (Tumor Necrosis Factor). This molecule is made by our bodies and stimulates inflammation. There are possible side effects and reasons why you may not be able to take these medicines. They include Remicade®, Enbrel®, Simponi® or Humira®.
- Preliminary work suggests that a zero dairy diet may lead to clearing in some patients. The diet needs to be really well controlled. Nothing at all from cow source can be used. In addition to no milk, cream, cheese, butter, yoghurt, cream cheese, cottage cheese, ice cream and derivatives like cheeseburgers and lasagna, this means checking protein powders and protein drinks to be sure there is no casein, whey, milk protein isolate, or milk solids. Soy and other vegetable and nut-sourced drinks and foods are acceptable, but should be the unsweetened variety only. No French vanilla; limit the sweetened chocolate.
- Staged CO2 laser marsupialization surgery for scarred and persistent lesions is now available. It is done in the office under local numbing, although IV sedation is available. The entire involved piece of skin is removed down to the deep dermal layer, and all edges are explored to find any hidden tracts or extensions. This reduces the possibility of recurrence. The area is bandaged and left to heal on its own. Complete healing generally takes 8-10 weeks. Click HERE for more information.
- Cryoinsufflation with liquid nitrogen is a technique used to treat smaller scarred areas with multiple sinus tracts or fistulas. It is done in the office under local numbing, although supplemental sedation is available. The liquid nitrogen is sprayed into the tracts via a small needle.. It will course through all hidden tracts or extensions, causing them to scar down. Post-procedure pain is minimal, and while color change or infection can occur, they are very rare. Three sessions are done at monthly intervals.
See the special diet at www.thepaleodiet.org
What will happen to me?
Some patients clear with early care and avoidance of all the irritants, the dairy and highly refined flour and sugar-containing foods, hormones, smoking, and stresses that appear to trigger the problem. They can be kept in Stage I or actually cleared. Patients in Stage II can be brought back to Stage I with aggressive care. And even some Stage III patients can be brought back to Stage II and Stage I. The drugs and diets and hormones need to be used for many years. This usually cannot be done with drugs and diet alone. Surgical treatment of the areas is often necessary but is usually nowhere near as difficult as most patients imagine.
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