Page updated: 12 May 2021

Oral and Dental

Problems with the mouth can have a very negative impact upon everyone and perhaps in particular those persons who have scleroderma. We use our mouths to eat, drink, taste, speak, swallow, smile and communicate hence disease that affects the mouth has the potential to lessen our enjoyment life.

Scleroderma can impact considerably upon the mouth – as recently discussed by Stephen Porter, Institute Director and Professor of Oral Medicine in UCL Eastman Dental Institute during his Facebook Live Q&A on dental & oral involvement in Scleroderma & Raynaud's.

In particular scleroderma may cause a tightening the of the soft tissues of the face and mouth thus limiting mouth opening and, separately, may lessen the function of the saliva glands thus causing the mouth to be dry. Each of these issues will now be discussed in more detail. In addition, the other disorders that may possibly affect the mouth of people with scleroderma will be briefly considered.

Tightening of the face and mouth

This only arises in some people and varies in severity. The skin of the face may slowly tighten causing an absence of wrinkles, the nose may become thinned and the mouth opening lessen. The reduced mouth opening (termed “microstomia” can make it difficult for people to open their mouths as wide as the past and hence there may be difficulty in eating or chewing or cleaning the teeth. Oddly, while there may be a loss of facial wrinkles that the lips can take on a mildly wrinkled appearance.

There are, at present, no well tested methods to easily reduced the risk of, or severity of the facial tightness. Some people may find it. Exposure to cold might be a driver of tightening of the facial, so try to keep warm with a thermal blanket and cover the face during cold spells – you could use a scarf or neck gaiter/tube.

Mouth stretching exercises may be useful for some people with microstomia. For best effects it is recommended that these exercises are performed once or twice a day (perhaps at the same time as tooth cleaning - to make it easy to remember).

Before exercising, it is always wise to warm up the area you plan to exercise. You can warm up the facial muscles by massaging the skin around your mouth with your fingers or using a warm flannel/compress over your mouth for 30 seconds before starting. You may notice some aching of the muscles around your mouth for a few days after starting the routine. The exercises themselves shouldn't be painful, so listen to your body, lessening the pressure should you experience any significant discomfort. You may wish to perform the exercises looking in a mirror, but don't do them if you have any ulcers or areas of soreness at the corners of the mouth until you have sought medical advice.

Occasionally if the lips are tight they can become trapped against the teeth following smiling. This problem may be lessened by applying a lubricating jelly or salivary moisturising gel to the upper front teeth. 

There is now mounting evidence that fat stem cell transfer may be an effective means of lessening facial and mouth tightness. This treatment is presently only available in a small number of centres but it would be worth asking your specialist as to whether this may be suitable and available to you.

Dry mouth

Scleroderma may cause damage to the salivary glands such that they fail to generate as much saliva as required hence patients have a loss of lubrication of the mouth and have difficulties with speech (e.g. long conversations become difficult), swallowing (particularly dry foods) and the sense of taste becomes blunted such that some patients have to add more flavorants than the past to food, or find some foods unattractive to eat. In addition a reduction of saliva allows foods to stick easily to the to the teeth and gums, thus increasing the risk of tooth decay (caries) and gum inflammation (gingivitis) and possibly increases the risk of oral malodour (halitosis; bad breath).

The damage to the salivary glands is causes by the same process as other aspects of scleroderma and in some instances where patients also have dry eyes the term “Sjogren’s syndrome” is used to describe the clinical picture. The risk of dry mouth is further increased by the use of a number of groups of medicines such as muscle relaxants, sleeping tablets and perhaps some anti-hypertension agents (e.g. Beta blockers). These agents do not cause damage to the gland – they simply block the nerves that stimulate the glands to work.

The treatment of long-standing dry mouth is based upon 3 principles:

Substitute the loss of saliva with another fluid or gel.

1. Several salivary substitutes are available either as “Across the counter (ATC)” items or via prescription. Alas there is no one that is better than another and each person has his or her own preference. These agents however usually have a short-term action and not all patients find them helpful. They can be rather expensive.
2. Some moisturising gels for the mouth are available as ATCs. These can be placed anywhere in the mouth and as often as the person so wishes. Not all patients find them helpful, and they can be rather expensive.
3. c. Sipping fluids (usually water) on a regular basis is often the simplest and cheapest means of keeping the mouth moist. Water is more appropriate than sugary drinks as these may cause tooth decay. Similarly regular sipping of sugar-free drinks can cause mile erosion (i.e., loss of the enamel) of teeth.

Stimulate the remaining functional salivary glands to work harder.

1. Sucking sweets may lessen any dryness of the mouth but sugar-containing sweets will increase the risk of tooth decay and non-sucrose containing sweets (e.g., “Diabetic sweets”) may contain sugars that cause gastrointestinal upset – although there is no great harm in not having a go at using these.
2. Chewing gum can lessen mouth dryness as the chewing action may push.
3. Several agents are available on prescription that may harmlessly cause the glands to work better by stimulating the mouth. These are generally only available on prescription. The evidence that they are truly helpful is however rather weak.
4. Pilocarpine is a tablet-form drug that when swallowed can stimulate the salivary glands to overwork. This is a prescription only medicine and patients are usually advised to take one to three tablets per day. It is most likely to be effective if there is not total loss of salivary function. It can cause gastrointestinal upset and often causes some sweating for the first hour after each taking each tablet. It is not suitable for patients with asthma, certain types of glaucoma or with certain heart disorders.

Prevent any dental decay and gum disease.

1. It is important for everyone to prevent tooth decay and gum disease. Both are caused by a build-up pf plaque on the teeth and thus are lessened by a regular routine of tooth cleaning.
2. There are many suggested methods to clean the teeth and gums and frankly any method is suitable if it does remove as much plaque as possible - and causes no harm (for example traumatises the gums or lining of the mouth). Clearly tooth cleaning is more challenging for those who have limited mouth opening or reduced manual dexterity. But some simple rules are:

i. Avoid having sweet foods or drinks throughout the day – as this encourages plaque to develop. Sucking sweets throughout the day is particularly troublesome.

ii. Clean the mouth twice per day

iii. Use a small headed manual or electric toothbrush

iv. Use a toothpaste that contains fluoride (as this protects the teeth from the effects of plaque)

v. Endeavour to clean between the teeth with small brushes with handles or floss (this can also be done using disposable floss holders)

vi. Use an anti-microbial mouthwash as this may be able to remove debris stuck between the teeth. There are many mouthwashes available, some are more bitter than others and some may cause staining of the teeth – so try to ask a dentist, hygienist or therapist for advice about this.

c. Endeavour to have a dental check up every 6 to 12 months to ensure that the mouth is being kept as clean as possible

d. Always seek the advice of a dentist, hygienist or therapist if you have a change in your mouth or neck that persists, or worries you, for more than two weeks.

The principals on the prevention of tooth decay and gum disease apply to everyone, not just those with scleroderma or a dry mouth of another cause.

Importantly if you have a change in your mouth or neck that persists, or worries you, for more than two weeks always seek the advice of a dentist, dental hygienist, dental therapist or doctor.

Other mouth aspects of scleroderma

There are a number of other possible problems that can affect the mouth of those with scleroderma. These include:

1. White patches that wipe off. This is usually “thrush” – a common fungal disorder that is unlikely to cause pain. It is a possible side effect of steroids and some immunosuppressive agents. It rarely needs treating, but if so a number of agents can be prescribed by a dentist or doctor.

2. White patches that do not wipe off. This may be lichen planus. It typically affects both sides of the mouth and particularly affects the inside of the cheeks (the buccal mucosae), gums or tongue.  This may arise spontaneously or as a result of some medicines. It can become painful and it is best that this is looked after by a suitable specialist. Occasionally patients can develop other white patches that may reflect chronic fungal infection or cancer. 

3. Mouth ulcers. These have many causes that range from trauma from a sharp tooth, to side effects of various medicines to mouth cancer.

4. Tingling or numbness of the lower lip. This is called trigeminal neuropathy. It is an uncommon feature of scleroderma and always requires to be investigated by suitable specialist.

5. Reduction in the size of the tongue. This is extremely rare and reflects rare instances of fibrosis of the tongue.

6. Mouth cancer. There is some evidence that patients wit scleroderma have a slightly increased risk of mouth cancer and that this risk is unrelated to the common causes of this tumour – namely tobacco and/or alcohol. The easiest way of considering if a change in the mouth is a rare, but possible, early sign of mouth cancer is to have any lump, ulcer, lose tooth or numbness that persists more that 2 weeks looked at by a dentist, doctor or specialist. The quicker the diagnosis is confirmed the better the eventual outcome. Please do note that the risk of mouth cancer in scleroderma is small, an possibly about 1% this the likelihood of an abnormality turning out to be cancer is small.

7. Painful enlargement of a salivary gland. This will usually be one of the parotid gland (that lie below the ear and behind the lower jaw). While uncommon, this is most likely to arise in patients who have longstanding dryness of the mouth. It is due to bacteria of the mouth passing into the gland. Patients with this may experience a bitter taste on the side of the swollen, tender gland. This problem can be managed by a doctor or dentist prescribing antibiotics. When there is repeated infection a specialist opinion is important.

8. Painless enlargement of several salivary glands. This usually reflects mild inflammation of the glands. It does not require treatment but it is always important to mention such features to your specialist – who in any case will detect it when they examine you.

9. Painless enlargement of a single salivary gland. This probably reflects mild inflammation but can be a sign of a tumour called Non-Hodgkin’s lymphoma. This is most likely to arise in patients who have scleroderma and salivary gland involvement (Sjogren’s syndrome) – indeed it may arise in about 5% of such patients. Thus patients with any painless swelling of a salivary gland that persists for 2 or more weeks should seek the advice of their doctor, dentist or specialist. These tumours usually respond well to treatment – but the quicker they are identified the better.

Tooth-brushing tips

The ideal tooth-brushing technique should remove the plaque but not cause any damage to the teeth or gums:

The roll technique is useful for people with healthy gums. The brush is placed with bristles on the gum tissue, the bristles are then pressed onto the gums making them blanch (whiten); maintaining the same pressure the bristles are moved across the gums onto the tooth surface. Behind the front teeth, the brush is held vertically and gently moved upwards and downwards.

The Bass technique is useful for patients with pre-existing gum disease. The bristles of the toothbrush are placed on the gum margins such that they point away from the crown of the tooth at an angle of 45°. The brush is vibrated backwards and forwards with a horizontal movement to gently dislodge the plaque. This can be a time-consuming method, is difficult to master and may cause mild trauma to the gums if not carried out appropriately with the correct brush.

Dental floss and dental tape needs to be threaded between the teeth and gently curled around the side of the tooth, slid down to the gums and gently brought back up to the top of the tooth. A suitable floss holder can make these easier to use for people with hand or joint problems.

Toothbrushes that might help:

• Angled brushes can help you access to areas of the mouth that are difficult to reach. These often have small heads and flexible handles and are therefore ideal for people with scleroderma.
• Altered filament length brushes - the middle row of filaments are shorter than the outer rows. These brushes clean above and below the tooth without causing over brushing. These are excellent for people with generally healthy mouths.
• Easy-Grip brushes - these are particularly useful for people who do not have the strength to grip closely or firmly. A toothbrush handle can be enlarged by fixing a ball of sponge rubber, nail brush or bicycle handle grip to the brush handle.
• Extended-handle brushes are particularly effective for people who cannot raise their arms. Two toothbrush handles can be glued or taped together or a tongue depressor can be taped to the brush handle.
• Electric toothbrushes - these are increasingly popular and are often more effective than ordinary brushes in removing plaque. They are ideal for people with scleroderma who have limited movement. Electric toothbrushes are often light and easy to hold.

Summary of “Rules” for mouth features of scleroderma

1. Avoid frequent use of sugary foods or drinks

2. Maintain as good a level of oral hygiene as you can

3. See a dentist every 6 to 12 months

4. Always seek the advice of a dentist, doctor or a specialist if you have change in the  mouth or neck that persists, or worries you, for more than two weeks

Additional sources of information

Details of oral medicine specialists can be obtained from The British & Irish Society for Oral Medicine or The Dental Council List of Specialists.

With thanks to our clinical reviewer:

Professor Stephen Porter, Institute Director and Professor of Oral Medicine in UCL Eastman Dental Institute.