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The Treatment of Lupus - General Aspects

Possibly the simplest way to review the treatment of lupus is to divide the subject into 2 sections - general treatment & drug treatment. This article deals with the 'non-drug' aspects of treatment, a separate article deals exclusively with the medicines used in lupus.

Lifestyle
Lupus often hits people at their most vulnerable - unexpectedly - when everything seems so good with the world. The shock is made worse by the 'doom & gloom' of so many older textbooks.

The first thing to learn about lupus is that it can be treated and does go away in many patients. Although every patient treats their illness differently, we really do believe that that lupus is a disease where knowledge is a good thing, especially as there are still doctors who claim to know little of the disease. There are now plenty of lupus books and leaflets on this and most countries now have their own patients' lupus societies.

Work
Can you do a normal days work? Yes - a number of the team at St. Thomas' have lupus and no group works harder! The main problem lies in the fatigue of lupus, especially when the disease is flaring. The fact that the patient 'looks well' doesn't help, especially if the boss is unsympathetic. In this situation it may be well worth obtaining an explanatory letter from your doctor.

Fatigue
Ask any 100 lupus patients their most important symptom; fatigue always, always comes out on top. The reasons for the fatigue are now being studied more intensively. Dr David D'Cruz, in one such study, found that a programme of graduated, gentle exercises improved fatigue scores to a significant degree.

Sun
Sun sensitivity (or more correctly, UV light sensitivity) is a well known feature of lupus. Whilst it makes good sense to avoid excess direct sun, there are 2 points worth making. Firstly, not all lupus patients are sun sensitive. Regrettably, there are no simple tests to predict who may or may not be photosensitive. Secondly, the propensity to develop sun-sensitive flare-ups of lupus often becomes less pronounced as the years go by. Having said this, caution and sun blocks both make sense.

Food
Lupus patients are very 'allergic' people. Allergies to chemicals, drugs (e.g. septrin & penicillin), insect bites and vaccines are common. It is probable that included in this list in some patients, is food allergy. I have certainly seen lupus patients whose joint pains or skin rash predictably flare with certain foods and drinks.
Which foods? There is no rule. The best initial advice is to keep a diary of 'bad days' to see if there is any pattern based on the previous day's foods. Some patients find that formal testing for food allergy helps. In our experience, these are a minority.

Alternative medicines
Alternative medicine is private medicine. You pay directly for your consultation and pay directly for your 'alternative remedies'. Your therapist has not had the 20 years of training of a medical specialist. Yet alternative medicine flourishes. In a survey in our own lupus clinic, two thirds of all patients were taking some form of alternative medicine, hopefully as well as their prescribed medicine. So many patients can't be wrong. Anything is worth a try, however please check with your doctor/specialist before taking any alternative medicine/supplements, to ensure that it will not react adversely with your prescription medication.

Pregnancy
Times have changed dramatically for the pregnant lupus patient. In most patients, pregnancy is uneventful and even in those with complicated lupus, successful pregnancy is increasingly the rule. Pregnancy in lupus is covered in more detail in a separate leaflet.

Surgery
The lupus patient is generally at no higher risk from surgery than anyone else, should he or she need it. Obviously, medication is important, the surgeon and the anaesthetist require a detailed list of these for their medical assessment.

Helping others
There can be few diseases where so much direct support for research comes from the patients themselves. Every little (or large) helps us, from running a race to helping our fund raising stalls and especially from encouraging your family and friends to join in as well!

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