Lupus Self-Management: Take Back Control

I walk into the room of a patient with systemic lupus erythematosus (SLE), and I ask, "How are you doing?"

My patient, who I have treated for many years, says, "I'm doing OK."

I ask, "What do you mean by OK?"

She gives me a big smile, "I feel normal."

I smile back, "That is how I always want you to feel." I repeat this scenario with many of my lupus patients.

I follow close to 200 SLE patients. Most are in remission or close to remission and off steroids. They are doing well—not just because of how I manage their SLE, but because they know the secrets of being proactive in their healthcare and doing their part in controlling their lupus.

This blog post aims to share some keys to their success.

"The Lupus Secrets" for Self-Management

• Practice strict ultraviolet light protection.
• Religiously, take your medicines, especially hydroxychloroquine (HCQ), if tolerated.
• Ask your doctor for vitamin D and whole blood HCQ drug levels every visit. I strive for a HCQ level of 750-1200 ng/mL and a vitamin D level of around 40 ng/mL vitamin D. These levels help reduce lupus flares.
• Do not smoke. It worsens lupus.
• Keep personal records of all labs and doctor notes in a home health record, especially those that made your initial diagnosis. Give your rheumatologist all other doctors' results. These records can be invaluable if you ever change doctors in the future.
• Keep up on all vaccines (pneumococcal, shingles, flu, COVID, human papillomavirus, etc). Infections are among SLE patients' top causes of death; most are avoidable with vaccinations. Human papillomavirus-related cancers occur in SLE at a higher rate.
• Work with your primary care doctor to prevent heart attacks and strokes, which occur more often and earlier in SLE. Know your cholesterol, HbA1C (glucose level), blood pressure numbers, and doctor's recommended goals. If they are not where they should be, ask your doctor how to improve them.
• Eat a healthy diet (e.g., Mediterranean) that may help reduce inflammation. Foods and supplements containing turmeric, ginger, and omega-3 fatty acids (e.g., walnuts, fatty fish, flax, and chia seed) may help reduce inflammation. Red meat, fried food, simple carbohydrates (bread, pasta, sweets), alfalfa sprouts, and Echinacea may increase lupus inflammation.
• Maintain excellent oral health. Poor dental and gum health may worsen lupus.
• Exercise regularly to maintain a healthy body weight and increase muscle mass. This helps reduce heart attacks and strokes and counter muscle loss in lupus patients.
• Learn stress reduction and healthy sleep habits. Uncontrolled stress and lack of sleep can cause lupus flares.

For additional self-management resources, visit: https://thelupusinitiative.org/.