Effects upon: Mouth
This page covers the following:
Introduction
Pemphigus and pemphigoid often appear in the mouth, and this can also be one of the body sites that is the most resistant to treatment. It is very frequently reported as the site of most frequent pain and can result in difficulties in eating. Please also see our food page.
How can I treat my mouth erosions?
Topical steroids such as betamethasone or flixonase nasules mixed in a little water are often prescribed. The latter can be swilled around the mouth and gargled with. Steroid ointments can be applied to particular areas inside the mouth after gently drying the area to be treated with a clean tissue. These can make a huge difference to the management of mouth erosions.
When using topical corticosteroids in the mouth, you may also be prescribed an antifungal solution, as taking them regularly can result in oral thrush. Rinsing with a combined antifungal/steroid mouthwash can help avoid this particular side effect.
Anaesthetic (analgesic) mouthwashes are available over the counter or by prescription if your mouth is very sore and are particularly helpful if used before meals. There are several proprietary treatments that may help, but many people find that rinsing their mouth with hydrogen peroxide is very helpful. Gengigel is good, and there is another product called Gelclair which helps to create a protective film over the lining over the mouth. Difflam is most frequently recommended by clinicians.
Can I avoid cleaning my teeth?
It is vital to keep your mouth and teeth clean, even if it is painful to do so. Oral diseases such as gingivitis and dental decay are found to be connected to diabetes and heart diseases.
Antiseptic mouthwash or gel may be recommended to help with plaque control, particularly at times when your gums are sore. Peroxyl mouthwash daily is useful or chlorhexidine twice weekly.
Some people have reported good results from Pulling Oil. Oil pulling or oil swishing, as the name suggests, involves swishing of oil in the mouth in the same way as mouthwashes and oral rinses. It has been used for centuries for the treatment and prevention of oral and systemic diseases, using oils derived from either sunflower, sesame, or coconut.
Try to avoid products containing Sodium Lauryl Sulphate (SLS) or Sodium Laureth Sulphate (SLES). SLS is a chemical that is a known skin irritant and commonly used in personal care and household products.
What toothpaste or products would you recommend?
The list below does not come with any guarantees or specific recommendations. It is only a small sample of products suggested by PEM Friends members and should not be viewed as an exhaustive listing. However, we hope you find something here to suit you. You may even be able to ask for some of the specialist products on prescription from your GP.
Alcohol free Corsodyl (used weekly as can stain the teeth)
AloeDent mouthwash and toothpaste range
Baby BioXtra gel toothpaste
Bioextra Moisturising Toothpaste (for dry mouth)
Biotène Moisturising Mouthwash
Bioxtra Mouthrinse
Burts Bees Beeswax Lip Balm
Gengigel
Green People No Scent Soft Lips
Greenpeople toothpaste range
Jason Lips Bee Healthier
Kingfisher Toothpaste
PEM Friends does not endorse any of the items shown above. These items have been suggested by individual members because they have found them useful.
Will my dentist understand?
Many dentists have a knowledge of pemphigus and pemphigoid and, in our experience, are often the first ones to diagnose your disease.
However, if your mouth is seriously affected, dental treatment can be problematic. If you are worried that your own dentist doesn’t have expertise in autoimmune blistering diseases, ask for a referral to a dental expert who understands these conditions. Dental Hospitals will usually recommend someone with appropriate expertise.
Many dentists are also reluctant to treat patients who are taking bisphosphonate drugs, such as Alendronic Acid. These drugs are used to build bone density in patients who have developed osteoporosis or osteopaenia (softening of the bone structures) and can have an adverse effect on the jawbone. Do talk to your dentist if you are taking these drugs.
Where can I find more information?
Do listen to the talk by Dr Roddy McMillan, who is a member of our Advisory Group.
The International Pemphigus and Pemphigoid Foundation also have very good management information on their website.