Caring for the lupus patient involves a number of critically important elements. Providing medical care as directed by the patient’s doctor, monitoring the patient’s physical status over time, and being sympathetic, understanding, and supportive are all involved. Educating patients and encouraging them to learn about their disease is another crucial element. The Patient Information Sheets in this chapter cover a range of topics about lupus and lupus medications and can help with this aspect of patient care.
The topics are

1. Living With Lupus   
2. Preventing Fatigue Due to Lupus  
3. Exercise and Lupus    
4. Preventing a Lupus Flare   
5. Serious Conditions Associated With Lupus   
6. Joint Function and Lupus    
7. Skin Care and Lupus   
8. Fever and Lupus   
9. Nutrition and Lupus     
10. Sexuality and Lupus   
11. Pregnancy and Lupus
12. Nonsteroidal Anti-Inflammatory Drugs (NSAIDs)  
13. Antimalarials   
14. Corticosteroids    
15. Azathioprine    
16. Cyclophosphamide   

Use the Sheets to Complement Existing Teaching Efforts
Over time, the doctor and other members of the health care team will probably discuss with a patient much of the information contained in these sheets. However, some patients may not absorb all the information given to them verbally. The Patient Information Sheets can be a useful backup. As the health professional talks through an issue, he or she may want to refer to or highlight specific sections of a sheet. This will help to reinforce the information and show the patient where to find it later.

Use the Sheets Selectively
The Patient Information Sheets cover a wide range of issues. Not all of them will be appropriate for each patient. For example, the sheet on Serious Conditions Associated With Lupus would not be appropriate for a patient with mild lupus. On the other hand, the sheets on Skin Care and Lupus and on Preventing Fatigue Due to Lupus may be particularly useful for that patient. One approach is to give the patient several of the more general Patient Information Sheets initially, then see which others are relevant as time goes on. When patients are first given a prescription for a lupus medication, they should also receive the Patient Information Sheet on that medication.

Use the Sheets in Tandem
The information contained in a number of the Patient Information Sheets is complementary, and it may be helpful to give the patient several sheets together. For example, the sheets on Exercise and Lupus and on Joint Function and Lupus would work well together, as would the sheets on Fever and Lupus and on NSAIDs or Corticosteroids. Several of the sheets that contain more general information, such as Living With Lupus or Preventing a Lupus Flare, would be a good complement to many of the sheets dealing with more specific topics.

January 26, 1999