How to Survive Lupus

by Sandra Hampson (a lupus sufferer)

Personal Assistant to Dr Graham Hughes MD FRCP

Lupus Research Unit,

St Thomas' Hospital, London.

SLE can be one of the most dramatic, frightening and lonely diseases. Dramatic because it can hit suddenly, with a combination of rashes, hair-loss, fatigue, flu-like symptoms and chest pains. Frightening because the books often predict doom and gloom - kidney disease, brain disease, advice against pregnancy and so on. Lonely because although the disease is commoner than, for example, multiple sclerosis in Britain, few people seem to know much about it.

HOW DO YOU SURVIVE THIS ONSLAUGHT?

1. FIRST, REMEMBER SOME FACTS: - AND THEY ARE FACTS.

2. GET AN EARLY REFERRAL

Perhaps more than any other "rheumatological" disease, lupus is medically complicated. It has many faces. Even in "mild" cases, kidney inflammation can go undetected unless a test for this is carried out. The erroneous improvement in outlook for lupus patients in the past 20 years has come largely from the early detection and management of the disease - treatment before irreparable damage has been done.

3. DON'T GO TO THE LIBRARY!

The old text books (and many public library medical dictionaries) portray a grim picture. At best, the information is woefully inadequate. Many of the old notions seem hard to shake off. Instead, obtain up to date information. There are excellent booklets available from a number of groups, notably Lupus UK (see Links to other sites) and the Arthritis and Rheumatism Council and a network of patient contacts throughout the UK for those who wish to meet others with the disease.

4. SEE A SPECIALIST

Lupus can affect many parts of the body and it is not uncommon for patients to have "done the rounds" of doctors. Once the diagnosis is suspected or confirmed, it is very, very important to see a lupus specialist, someone who sees the disease frequently and can put together the many differing symptoms of the illness. Fortunately, lupus experts are no longer the rarity they once were.

Most major hospitals now have physicians who have had some training in lupus (these are most often rheumatologists, dermatologists or nephrologists). If in doubt, ask your G.P. Check with Lupus UK or ARC.

5. DON'T BE FOBBED OFF

While some cases present dramatically, in others there are less clear cut features - often with ill health going back over many years. Some of the common "early" features are headaches (including teenage "migraines"), sensitive skin (including particularly bad reactions to insect bites, for example), recurrent "glandular fever" and teenage "growing pains". Many lupus patients are either mis-diagnosed, put into convenient categories such as M.E. or are variously accused of being "hysterical", depressed (including post puerperal depression - one of the ways lupus can present) or simply as the "mystery case". Although lupus may be a minority diagnosis in these common situations, the test screen for lupus - the ANA (antinuclear antibody) is cheap and obviously important.

6. GET TO KNOW ABOUT THE DRUGS

In the old days, lupus meant steroids - in high doses - and although steroids are used for more active diseases, the doses are lower and the use of other medications such as anti-malarials have allowed many patients to reduce their dosage and even come off the drug. For those at the other end of the scale - for example, those patients with active kidney inflammation, the use of low dose Cyclophosphamide injections have been the major advance, allowing clinical successes to combine with few side-effects.

7. TEST YOUR OWN URINE

If necessary, learn how to test the urine. The kidney is the organ which worries doctors and patients the most in lupus (again, only approximately 40% of all lupus patients get kidney inflammation). The early sign of such inflammation is a leakage of protein in the urine and this is simply tested by a blotting paper test. The urine test is done in all clinics. It is certainly the practice in our lupus clinics at St Thomas' to give patients their own albumin testing sticks. A negative test certainly is always reassuring.

8. PREGNANCY

Pregnancy, for the most part, is normal in lupus patients. There is a slightly higher tendency to miscarriage and this can now be forecasted (the antiphospholipid test: see Hughes' Syndrome). There are now specialised lupus pregnancy clinics at a number of hospitals where patients are seen by teams of lupus doctors and obstetricians, including St. Thomas'.

9. BEWARE OF SUNLIGHT!

About 50% of all patients (remember - not all patients) are sensitive to ultraviolet light. There are no tests to forecast this unfortunately so do be cautious. This can be a major problem when the disease is active but often becomes less of a problem when the disease goes into a remission. Don't forget that you can get quite a dose of UV light, for instance, through car windows when travelling on long journeys.

10. BEWARE OF MEDICATIONS AND ALLERGIES

Lupus patients are allergic beings and drug reactions are very common. One drug that should be avoided is Septrin. Almost all our patients with lupus seem to have had allergies if tried on Septrin. There are no specific rules but the first indication of a rash on any drug means that the drug should be stopped.

It may well be that food or alcohol allergy is also slightly more common in lupus patients and you should try to get an idea for yourself of factors which seem to cause the disease to grumble.

11. VACCINATIONS

Beware of vaccinations also. Although it is difficult to be dogmatic about this, there are unfortunately a number of patients in whom a disease flare occurs after, for example, flu vaccine. A sensible pathway is to stick to minimum requirements when travelling abroad.

12. SHOULD I TEST MY FAMILY?

There is a slight genetic tendency to lupus but this is a small tendency compared with many other diseases. Nevertheless, if a teenage daughter, for example, starts to complain of some of the features of the disease, such as joint pains, tiredness and rashes, hairloss and so on, then clearly it is wise to know what is going on from the start. One of the major advances in the last 20 to 30 years in lupus is the earlier diagnosis and this is what has made an enormous difference to the prognosis of the diseases.

13. LEAD AS NORMAL A LIFE AS POSSIBLE

There are many famous people with lupus, living active and busy lives. There are also many thousands of people living less famous, yet equally fulfilling lives. The way you handle your lupus is a very private matter. Some patients do not wish to discuss their condition with anyone other than close family and friends, while others gain a lot of benefit from the links that have been built up in this country and abroad with very well supported lupus societies.

A lupus sufferer myself, I know that life can be a struggle at times, but I think the "key" to living a "normal life" with lupus is to be aware that there are times when you have to take special care of yourself and certainly cannot burn the candle at both ends. However, whenever possible, and definitely when the disease is quiescent, one should try to live a full and active life. Pay it your respects by all means, but do not give it too much time of day.

For more information please write to:

St Thomas' Lupus Trust

The Rayne Institute,

St Thomas' Hospital,

London SE1 7EH

Tel: 0171-922-8197


Lupus UK

Head Office

St James House,

Eastern Road,

Romford,

Essex RM1 3NH

Tel: 01708-731251

Fax: 01708-731252

The Arthritis & Rheumatism Council

Coperman House,

St Mary's Gate,

Chesterfield,

Derbyshire S41 7TD.

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