Lupus Site - a guide for lupus patients and their families

How can Lupus affect the mouth and nose?

One of the most common features of lupus is mouth ulcers. This often occurs during flares along with increased joint pains rashes and hair loss. Fortunately in most people when the disease settles the mouth ulcers settle as well, although stress or tiredness can also make mouth ulcers worse. Mouth ulcers can be painful and uncomfortable and it they are an ongoing problem there are simple treatments available such as antiseptic mouthwashes and sometimes steroid lozenges or paste . Occasionally the nose can also be affected in the same way and vaseline cream or steroid paste or nasal spray can be used if necessary. In the vast majority of people these simple measures, and controlling of disease flares with low dose steroids and/or tablets such as hydroxychloroquine, are all that is required. Very occasionally ulceration of the mouth or nose can be more severe and if it does not respond to these simple measures there are more specialist drugs available.

The importance of oral hygiene must not be forgotten. Keeping teeth brushed and giving up smoking are even more important in people with lupus. If the mouth is particularly sore a soft toothbrush can be used.

Can the lupus skin rashes spread inside the mouth?

Some people with lupus can develop discoid skin lesions which are slightly elevated, red areas of skin. The term discoid came from their appearance of looking like red coins or discs on the skin. Similar lesions can occur inside the mouth or nose and occasionally they can also ulcerate.

This type of problem is much less common in people with systemic lupus and is more likely to occur in people whose condition is fairly limited to the skin. Again common sense such as the importance of oral hygiene, stopping smoking etc applies. Depending on the type of lesion, steroid paste and antimalarial tablets such as hydroxychloroquine and/or mepacrine are often used to treat this type of lupus disease. There is some suggestion that people with discoid lupus in the mouth, where it is very florid, may be at greater risk of this turning into cancer. People can read this and get very worried about it. It should be pointed out that this is very unusual and really only applies to the most extreme cases but obviously will be carefully watched for in that very small number of individuals.

Having a chronic condition such as lupus may increase the likelihood slightly of getting some other conditions that can affect the mouth even though they are not necessarily related in their mechanisms. Thus cold sores and oral thrush can sometimes occur. In general the small doses of oral steroids that are used to treat lupus do not mean infections in the mouth are much more likely. However, drugs to prevent thrush will be given where, for example, people are being treated with cyclophosphamide infusions, to try and stop this happening. The lining tissue of the lower bowel and the genital tract is similar to that of the nose and mouth and so often problems that affect one can affect the other.

How can the eyes be affected in lupus?

One of the conditions that can occur along with lupus is Sjögren's syndrome. This occurs in about 1 in 5 to 1 in 10 people with lupus. In Sjögren's syndrome the immune system attacks the glands that produce fluids to lubricate different parts of the body. This most commonly produces dry eyes and dry mouth (xerostomia). It is usually milder in people who also have lupus. Artificial tears or saliva will often help. There are also some special pastilles that can be sucked to help the production of saliva. It is important however that these are sugar-free as the lack of saliva increases the risk of tooth decay. There is a blood test for a specific antibody that is often found in people with Sjögren's (anti-Ro and anti-La antibodies). Sometimes a tiny piece of tissue can be removed form inside the lower lip to detect the condition (a salivary gland lip biopsy). Sjögren's syndrome can also cause dryness of the vagina (which can make sexual intercourse sore), or dryness of the skin. Gels and creams are available to help these symptoms.

At some time about 1 in 10 people with lupus develop conjunctivitis. This usually presents with slightly gritty red eyes which can be sore and itchy. Depending on the cause this may require steroid or antibiotic eyedrops.

Use of long term steroids, particularly at higher doses increases the risk of getting cataracts. It may also increase the likelihood of getting glaucoma. On the whole it must be stressed that this is uncommon, but If there is a family history then regular eye checks by an optician may well be advised. Occasionally people report slight blurring of vision when the steroid dose goes up or down as a result of fluid changes in the eye or when the steroid dose is changed. If you are on hydroxychloroquine (plaquenil) or chloroquine there is a theoretical risk of developing inflammation at the back of the eye. Over recent years however it has become clear that this risk is incredibly small at the doses that we use these drugs at, if indeed there is any risk at all. Nevertheless as a precautionary measure it important to mention any changes in your ability to read or changes in colour vision to your doctor, and from time to time your doctor may recommend an eye check at your opticians. If you have been on this medication for a few years it may be sensible to do this about once a year.

Lupus can, rarely, affect the blood vessels in the eye which may lead to pain and reduced vision. If this happens then you should phone your doctor straight away as it may be important to treat you with steroids and other drugs, whether as drops, or tablets, or injections, quickly to prevent permanent damage occurring. Inflammation inside the eye (iritis or scleritis) can also produce a painful red eye and again urgent treatment may be needed.

Sometimes conditions such as shingles can affect the eye and people who are on steroids or immunosuppressants such as azathioprine or cyclophosphamide or whose spleen is not working well are more prone to infection or reactivation of an infection they have had many years ago. This may require antibiotic or anti-viral treatments. In these circumstances steroids may actually make this type of problem worse. Clearly if there is something very wrong and out of the ordinary, it is important not to waste time but to seek medical advice quickly and get the right treatment straight away.

There is a range of other problems that can affect the eye. Some people with lupus may get an overactive thyroid gland that can occasionally cause prominence of the eyeballs. If there is inflammation of the nerves that supply one or more of the muscles to the eye (optic neuropathy) this may cause double vision when you look in a particular direction or directions. This again is uncommon.

What are the key messages to take home from this?

On the whole lupus affecting the mouth, nose and eyes are generally relatively mild problems. Sjogren’s syndrome (dry eyes and dry mouth) occurs frequently but is usually mild. Mouth ulcers are unpleasant but can be dealt with in most cases fairly simply. Similarly mild problems affecting the eyes are common, but if something out of the ordinary develops suddenly, such as decreased vision in one eye, or a red, painful eye, then you may need to see an eye specialist straight away, either through an eye casualty department, if available, or your GP and it may not be sensible to wait until the following day when an appointment is available. In those circumstances it may also be sensible to let your lupus specialist know what is happening so that everybody is aware of what is going on.