SLE is an incurable, lifelong disease that flares and goes into remission. It is mild in many patients and more severe in others. Pain and fatigue can be disabling even in mild cases.
Most of the lifestyle changes you make will be needed to manage symptoms of the disease. A few others will help to prevent flare-ups, whether you are well or sick.
General Guidelines for Managing SLE
- Avoid sun exposure
- Treat all cuts and infections quickly and vigorously
- Stay in touch with your physician
- Learn the warning signs of a flare-up
- If you smoke, learn how to quit
- Eat a healthful diet
- Limit emotional stress
- Get adequate rest
- Exercise moderately, with your doctor's permission
Avoid Sun Exposure
SLE makes many people sensitive to sunlight. Sunlight will burn you easily, worsen SLE skin rashes, and may precipitate a flare-up of other symptoms. To protect yourself:
- Avoid direct sunlight, particularly between 10 am and 4 pm.
- Wear sunscreen with an SPF of at least 30 whenever you go out in the sun.
- Wear a hat, long sleeves, and clothing that covers your legs all the way down to your stockings.
SLE is a disease of the immune system. Some medications used to treat SLE symptoms and its complications suppress the immune system. This puts you at a higher risk for getting infections. The immune system works differently in people with SLE. Infections may come more frequently, or last longer than in the average person. To protect yourself:
- Make sure your vaccines are up to date
- Get the yearly flu vaccine
- Get the pneumococcal vaccine
- Avoid people who are sick, even if it is just a common cold
- Practice consistent handwashing, especially after being in contact with someone who is sick
If you have develop symptoms of an infection, call your doctor.
Stay in Touch With Your Doctor
Make sure you have a doctor you can contact readily. Schedule regular appointments with your doctor, and make contact immediately if you experience any new symptoms or you think a flare-up is coming on. There is much that can be done to alleviate symptoms and prevent flare-ups. A cooperative lifelong relationship with your healthcare provider can greatly improve your quality of life.
Contact your doctor in the following cases:
- You notice the warning signs of a flare-up; be sure to discuss these signs ahead of time with your doctor so you will recognize them quickly. (Some common ones are listed below.)
- You experience side effects from a medication you are taking to treat SLE.
- For regular appointments, which may help your doctor detect disease activity even before you have symptoms
Learn the Warning Signs of a Flare-up
The earlier a flare-up can be treated, the less severe it will be. Therefore, it is essential for you to recognize the warning signs and to be in close contact with your doctor.
Common warning signs of a flare-up include:
- Increased fatigue
- Abdominal discomfort
- Chest pain
- Shortness of breath
The harmful effects of smoking are well known. Smoking slows the healing process and causes serious health complications. If you smoke, ask your doctor about how you can quit .
Eat a Healthful Diet
Eating well can help ensure that your body has the nutrients it needs to function properly and to help you manage SLE and its complications. A healthful diet is one that is low in saturated fat and rich in whole grains, fruits, and vegetables.
Limit Emotional Stress
Feeling stressed can put extra burden on your body, including your immune system. Stress can worsen your symptoms, so take steps to reduce stress in your life.
It is important to stay involved with life despite the pitfalls that you may encounter. Consider joining social groups. If you have difficulty getting out, consider staying connected through the Internet with video chat, email, or social networking. Try not to isolate yourself and stay in touch with your friends.
Depression with SLE is very common. Talk with your doctor if you are feeling down and this lasts more than a couple of weeks. Sadness, hopelessness, lack of pleasure in activites, and fatigue are a few signs that you may be experiencing depression. If you have been diagnosed with depression, take your medication as directed. You may also want to consider counseling, either alone or with a group.
Get Adequate Rest
Sleep is nourishing to your body. Your overall health, including your immune function, may be compromised if you do not get enough quality sleep. Many people with SLE get tired easily. Strive for 7-8 hours of sleep per night, and take naps if you need them.
- Reviewer: Rosalyn Carson-DeWitt, MD; Brian Randall, MD
- Review Date: 06/2013 -
- Update Date: 05/11/2013 -