The patient’s role in controlling lupus
Lupus is a little like a freight train; it is much easier to stop if the brakes are applied before the train has gained too much speed. The key to control of lupus is to avoid flares or, at least, to stop them before they progress in speed and severity.
Lupus can be a serious disease and it is often very difficult to predict what will be the disease course in an individual patient. What is extraordinary is that lupus patients have in their hands some power to keep their disease under control by avoiding certain things. I know of few other illnesses that offer this opportunity.
Protect yourself from the sun Sun exposure is known to be a cause of troublesome skin rashes in 50% of all patients. Not only do these rashes make patients feel self-conscious about their appearance, they may also ruin their plans, mean extra trips to the doctor and require more tests and treatments (various cortisone ointments or pills). To prevent this problem it is recommended that all patients use a sunscreen on all the exposed parts of the body. If you are not already sun sensitive, the odds may be as high as 50% that you will be eventually.
It is also important to know that sun exposure can cause a flare of internal lupus where the problems can be much more serious. The simple use of a sunscreen can help you avoid this danger. Staying out of direct sunlight does not protect you from the reflection of ultra-violet rays; you still need to use a sunscreen.
Look for a sunscreen with a sun protection factor (SPF) of at least 25, which blocks both UV-A and UV-B rays. This number is written on the front of the container and the higher the number the more protection you get. Paying more does not mean that you will have better protection than with a cheaper brand. You may have to try different brands to find one that feels comfortable and that does not stain your clothing. Remember to apply the sunscreen at least 30 minutes before going out to allow it to penetrate the skin and dry. Apply it again after swimming or a bath, even if you are using a water resistant brand. If you go skiing in the winter, don’t forget to apply sunscreen to your face and ears. Sunscreens may also be useful for patients who are sensitive to fluorescent lights.
Do not smoke
Lupus patients must do all they can to ensure their general good health and this is reason enough to emphasize the importance of not smoking. In the past 30 years, the life expectancy has improved considerably for lupus patients, thanks in part to the use of steroids. Now that lupus patients are living much longer, some of them are victims of a long term complication of steroid use, premature coronary disease or heart attacks. While several other factors may contribute to this problem in lupus patients, the association of smoking with heart disease is such that lupus patients should not smoke.
Consult your physician about birth control
Birth control pills containing estrogen do not cause SLE but they are thought to increase the risk of flares in patients who already have the disease. Some birth control pills contain mostly progesterone or low-dose estrogens and these may cause fewer problems. For the lupus patient, barrier methods (condoms or diaphragms) and spermicidal agents are the safest forms of contraception. I advise that you discuss with your physician the use of birth control pills and alternative methods of contraception. If you have to use birth control pills, they should be prescribed by a physician who is familiar not only with contraception but also with SLE.
Choose the best time to become pregnant
If you want to become pregnant, your physician will be able to help you choose the best time. A lupus flare in pregnancy is of great concern because two lives are affected. The ideal time would be when your disease has remained in remission without any medication other than a small dose of prednisone or no prednisone at all (other medications may be harmful to the baby). SLE is also associated with a higher risk of miscarriage, premature delivery and other serious problems. As a result, pregnant lupus patients are best treated in High-Risk Pregnancy Clinics. If you become pregnant by accident, you should see your physician as soon as possible.
Know your antibiotics
Drugs containing sulfonamides (certain antibiotics used in the treatment of infections such as urinary infections) are best avoided as they may mimic a lupus flare by causing fever, arthritis, skin rashes, sunsensitivity and other problems. In general, lupus patients should not take antibiotics (or any drug) unless their physician feels that it is absolutely necessary. Canadians are plagued by colds during the cool season, however, most colds are caused by viruses and viral infections are not helped by antibiotics.
Do not experiment with special diets
It is certainly important that lupus patients maintain balanced and healthy eating habits, however, there is no special diet that can cure lupus. Any advertisement that claims otherwise is quackery. If such a miracle diet existed, I would be the first one to recommend it to my patients as it would make their lives (and mine) so much simpler. So-called “natural” products are today’s fad and I used to be accepting whenever a patient told me they were eating these “natural” foods. Recently, however, there have been reports of lupus flares in patients taking alfalfa tablets and I think patients should not experiment with natural products without informing their physician.
I am also asked about the use of vitamins and, if a patient is on high doses of prednisone, I prescribe calcium and vitamin D supplements. Otherwise, there is no vitamin supplement that is scientifically proven to be helpful in SLE.
Say NO to quackery and to miracle cures
Some of the quack treatments being proposed to patients nowadays are so astonishing that I sometimes have the feeling we are back to witchcraft and the Middle Ages. Quackery is disgusting because it is based on lies and exploits the patient’s vulnerability as a sick human being, hoping to get better. Unfortunately, there are always some people ready to make a dollar out of this hope.
Many quack remedies require that patients stop taking their medications so as to “cleanse the body”. When drugs, such as prednisone, are needed to keep lupus under control, it is very dangerous to stop taking them. These miracle cures are made even more dangerous because patients often have to travel to another city, province or country to get them. If a serious flare should result, patients may well be far away from the medical team that can best help them and be unable to travel. The fact that some patients are prepared to take these risks shows how profoundly their lives have been affected by lupus.
Throughout this booklet, I have tried to emphasize the great progress that has been made by research on lupus and its remarkable impact in improving the lives of lupus patients. The only way for SLE patients to maintain the same rapid pace of improvement is to invest their money in scientific research, not quack remedies.
As you have seen, there are many things that you can do, or avoid, to help keep your lupus under control. However successful the treatments or however careful patients are to avoid flares, lupus remains a chronic disease that will not always be controlled. In the next chapter, I will discuss how patients can learn to cope with the physical and emotional effects of living, day after day, with SLE.