What are the aims of this leaflet?
This leaflet has been written to help you understand more about oral pemphigoid. 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 oral pemphigoid?
Oral pemphigoid (pemphigoid of the mouth) is an uncommon blistering condition which affects primarily the lining of the mouth and gums. Other moist surfaces of the body (known as mucous membranes) can also be affected, and these include the surface layers of the eyes, inside the nose and the genitalia. The skin is less commonly involved but can be affected by a similar blistering condition, known as bullous pemphigoid.
Oral pemphigoid tends to develop in middle and old age, and women are more often affected than men. Although it is not a serious condition, the diagnosis of any type of mucous membrane pemphigoid is important as it will alert your specialist to the possibility that the condition may involve your eyes, even if you have no symptoms. Eye involvement (known as ocular pemphigoid) does not occur in all patients with oral pemphigoid, but it is potentially serious as it may cause scarring and affect your eyesight.
What causes oral pemphigoid?
Oral pemphigoid is considered to be an autoimmune disease. For an unknown reason, antibodies (natural substances important in defending your body) develop in the blood and then react with the surface layer of your mouth (or other mucous membranes) causing blisters, which usually break down to leave ulcers.
Oral pemphigoid is not contagious, nor due to food allergy.
Is oral pemphigoid hereditary?
Oral pemphigoid is not considered to be an inherited condition.
What are the symptoms of oral pemphigoid?
Mild cases of oral pemphigoid may be symptom-free. When blisters form in the mouth they are usually painless until they breakdown to ulcers (or erosions). These typically cause a burning or stinging discomfort when eating spicy foods, citrus fruits, drinking hot beverages/alcohol or using mouthwashes that contain alcohol. If your gums are affected, they may become sore, particularly when brushing your teeth.
What does oral pemphigoid look like?
Oral pemphigoid typically presents as red or ulcerated patches in the mouth. Blisters may occur but tend to easily break down and leave ulcers. Scarring may be a consequence of oral pemphigoid. The gums are frequently affected, causing them to become red and shiny (desquamative gingivitis), and may be the only manifestation of this condition. The palate (roof of the mouth) is also often involved.
How is oral pemphigoid diagnosed?
Oral pemphigoid cannot be diagnosed solely by its appearance as other conditions can present with similar signs. One or two small samples are usually removed (under a local anaesthetic) from an affected area inside the mouth (this procedure is known as a biopsy). The diagnosis can then be confirmed by looking at the samples under a microscope and testing them for specific antibodies associated with oral pemphigoid. A blood test may also be required to detect these antibodies in the circulation.
Your doctor may refer you to an eye specialist (ophthalmologist) who can pick up early signs of pemphigoid involving the eyes.
Can oral pemphigoid be cured?
No, but treatment can reduce the symptoms. Oral pemphigoid may go away by itself in due course, but it usually lasts for a number of years.
How can oral pemphigoid be treated?
If your oral pemphigoid is symptom-free then treatment is often not required.
Anaesthetic (analgesic) mouthwashes are available if your mouth becomes sore and are particularly helpful if used before meals.
Topical steroids which can be applied locally to the mouth are effective for most patients. These are available as mouthwashes, sprays, pastes and small pellets which dissolve in your mouth.
If your gums are affected by oral pemphigoid (desquamative gingivitis), it is important that you keep your teeth as clean as possible by regular and effective tooth brushing. If not, a build-up of debris (known as plaque) can make your gum condition worse. Your dentist/dental hygienist will be able to give oral hygiene advice and will arrange for scaling of your teeth as necessary.
An antiseptic mouthwash or gel may be recommended to help with your plaque control, particularly at times when your gums are sore.
Severe cases of oral pemphigoid may need treatment with a short course of systemic steroids (i.e. taken in tablet form). Long-term treatment with systemic steroids is not recommended because of the potential for side effects.
In a few cases, other types of oral (systemic) drug treatment may be required. These “dampen down” the oral pemphigoid by suppressing the body’s immune system and can be effective. These can, however, be associated with a number of side effects which should be discussed with your specialist. Regular blood tests are required when taking most of these drugs, particularly during the early stages of treatment.
Self care (What can I do?)
Spicy, acidic or salty foods should be avoided if these make your mouth sore. It is important that your mouth is checked on a regular basis by a dentist or oral specialist. The importance of maintaining a high standard of oral hygiene has already been emphasised. Some toothpastes may aggravate your oral pemphigoid, in which case your dentist may be able to suggest an alternative. It is also advisable to stop smoking and reduce your alcohol intake to recommended limits. If you think you may have oral pemphigoid, visit your GP or dentist to refer you to a dermatologist for diagnosis and treatment.
Where can I get more information about oral pemphigoid?
Web links to detailed leaflets:
This patient information leaflet was written in conjunction with the British Society of Oral Medicine.
For details of source materials used please contact the Clinical Standards Unit (firstname.lastname@example.org).
This leaflet aims to provide accurate information about the subject and is a consensus of the views held by representatives of the British Association of Dermatologists: its contents, however, may occasionally differ from the advice given to you by your doctor.
This leaflet has been assessed for readability by the British Association of Dermatologists’ Patient Information Lay Review Panel
BRITISH ASSOCIATION OF DERMATOLOGISTS
PATIENT INFORMATION LEAFLET
PRODUCED OCTOBER 2009
UPDATED DECEMBER 2012
REVIEW DATE DECEMBER 2015