What are the aims of this leaflet?
This leaflet has been written to help you understand more about hidradenitis suppurativa. It tells you what it is, what causes it, what can be done about it, and where you can find out more about it.
What is hidradenitis suppurativa?
Hidradenitis suppurativa is a chronic, recurrent, and painful disease in which there is inflammation in areas of the apocrine sweat glands. These glands are found mainly in the armpits and groins. Within hidradenitis there is a blockage of the hair follicles. This causes a mixture of boil-like lumps, areas leaking pus, and scarring.
Hidradenitis tends to begin in early life, and is more common in women, black and Mediterranean people. It affects about 1% of the population.
What causes hidradenitis suppurativa?
It is still not clear why some people get this disease, but blockage of the pores plays a part. As the secretions cannot escape, the hair follicles may swell up and burst, or become infected.
Contributory factors include the following:
- Hormones may be involved in the control of apocrine sweat glands and certainly play a part in the disease. Hidradenitis suppurativa affects women more than men. It does not start before puberty or after the menopause. It may get better during pregnancy, but is often worse before menstrual periods. Some patients do well with hormone treatments (see below).
- Bacteria play a part too, but a variety of germs, and not just one special type, is found in the spots. It is not clear whether they cause the disease, or just flourish within it.
- The immune system is involved in some way with the severity of hidradenitis and treatments that reduce the immune system activity have been helpful in occasional cases (see below).
- Hidradenitis could be also linked to the bowel condition Crohn’s disease, especially if it involves the groins and the skin near the anus.
- There may be a link with acne and pilonidal sinus (a chronic abscess at the base of the spine).
- Smoking and obesity do not cause hidradenitis, but are strongly associated with it and may make it worse.
- Poor hygiene does not cause hidradenitis suppurativa.
Is hidradenitis suppurativa hereditary?
Hidradenitis suppurativa runs in the families of about one third of those with the condition.
Is hidradenitis suppurativa contagious?
No, it can’t be passed on to another person by contact.
What are the symptoms of hidradenitis suppurativa?
Hidradenitis suppurativa is usually painful, and the lumps hurt if they are pressed. Discharge of pus can be a problem, requiring daily dressings. Hidradenitis can have severe psychological effects such as depression, and can rarely be associated with inflammation of the joints (arthritis).
The main areas affected are the armpits, and the skin of the groin, genital and pubic regions. The skin around the anus, the buttocks, thighs, and breasts can give trouble too.
In the affected areas, the skin shows a variable mixture of blackheads, red lumps looking like boils, pus spots, cysts, and areas that constantly leak pus (sinuses). As time goes by, more and more scarring appears.
How will hidradenitis suppurativa be diagnosed?
The diagnosis is made clinically, taking into account the areas that are affected, and the look of the spots. Your doctor may take swabs from the area to see which type of germ is present. There is no specific test on which the diagnosis is made. The condition is often misdiagnosed initially as a boil, infection or folliculitis; this can result in delayed treatment and progression of the disease with scarring.
Can hidradenitis suppurativabe cured?
No, it usually persists for many years, but can become inactive eventually. Treatment usually helps even though it cannot switch the hidradenitis off once and for all.
How can hidradenitis suppurativa be treated?
Treatment is tailored for each individual. In general terms, early hidradenitis suppurativa is usually treated medically, whereas more longstanding and severe hidradenitis suppurativa can sometimes benefit from surgery as well, especially if there are only one or two areas affected.
If hidradenitis suppurativa suddenly becomes worse:
- This may be due to a bacterial infection with ordinary germs of the types that infect cuts and grazes; so antibiotics such as flucloxacillin may be used as a short course. This can be given to you by your GP. The choice of antibiotic can be guided by the doctor taking a swab from the pus.
- If this fails you might need to go to the casualty department in the nearest hospital to have the abscess/boil treated surgically (incision and drainage), followed by an antibiotic.
- Antibiotics: These are given by mouth. They have to be taken for a prolonged (at least 3 months) course in order to help to suppress attacks. There are different types that can be given with variable outcome for each. These include Erythromycin, Clarithromycin, Tetracycline, Doxycycline, Minocycline, Lymecycline, Metronidazole, Clindamycin and Rifampicin. In hidradentitis, antibiotics work by suppressing inflammation rather than by killing bacteria.
- Antiseptics: Patients are frequently prescribed an antiseptic such as 4% chlorhexidine wash, to reduce bacterial colonisation of the skin. Antiseptics are usually applied to all areas of the skin except the head and neck, and are washed off after five minutes.
- Retinoids (vitamin A derived tablets) such as isotretinoin or acitretin may help too, but they have to be given with caution by specialists, so they are available only from dermatology clinics.
- For women whose hidradenitis suppurativa flares before each period, tablets known as antiandrogens can sometimes be useful. Anti-androgen treatment can be as part of a contraceptive pill.
- Immunosuppressive treatment: If the disease is severe, stronger immune suppressant drugs may be used but with caution as their benefit has to be weighed against their possible side effects. These drugs include tablets or injections. The tablets include oral corticosteroids, ciclosporin, tacrolimus and mycophenolate mofetil. The injections are called collectively ‘biologics’ and include infliximab, etanercept and adalimumab.
Treatment of resistant cases:
- Persistent discharge or inflammation in the same site despite medical treatment can sometimes require surgery, either to remove small areas of repeated inflammation, or wider procedures to take away all the affected tissue. Other methods of treatment include cryotherapy (freezing with liquid nitrogen), photodynamic therapy, and ablative laser therapy. None of these are of proven benefit.
Self Care (What can I do?)
- Wash with antiseptic soaps or bath additives
- Avoid tight clothing
- Stop smoking
- Stress management
- Support group referral
- Lose weight
Where can I get more information about hidradenitis suppurativa?
Web links to detailed leaflets:
Links to patient support groups:
The Hidradenitis Suppurativa Trust
PO Box 550
Chatham, ME4 9AH