Talking to Your Doctor About Systemic Lupus Erythematosus (SLE)
You have a unique health history. Talk with your doctor about your risk factors and experience with SLE. By talking openly and regularly with your doctor, you can take an active role in your care.
Here are some tips that will make it easier for you to talk to your doctor:
- Bring someone with you. It helps to have another person hear what is said and think of questions to ask.
- Write your questions ahead of time, so you don't forget them.
- Write down the answers you get, and make sure you understand what you are hearing.
- Don't be afraid to ask your questions or ask where you can find more information. You have a right to know.
Specific Questions to Ask
- Could my symptoms be caused by something else?
- Is there anything unusual that I need to know?
- Is there any way to tell how much my symptoms will worsen?
- How safe would it be for me to get pregnant? Would my baby be at greater risk?
About Your Risk of Getting SLE
There is a history of SLE in my family. Does that raise my risk?
About Treatment Options
- Which medicines do you suggest I take?
- What side effects and benefits can I expect from them?
- Will these medicines affect fertility? Can they be used during pregnancy? Do I need to use birth control while I’m on them?
- How soon will I have relief from these medicines?
- Will I take them all the time or only when I have problems?
Is standard treatment my best choice, or should I look into a clinical trial?
- Will you help me find clinical trials and talk to me about them?
- Are there other specialists I should see?
- Are there things I can do to prevent flare-ups and health problems?
- Are there any complementary or alternative therapies I should think about?
About Lifestyle Changes
- What disabilities can I expect, and in what ways can I prepare for them?
- What social support should I think about?
- How long will flare ups get in the way of my everyday life?
About Your Outlook
- What can I tell my family and friends about my SLE?
- How will this affect my roles and relationships with my children, family, friends, and coworkers?
- What health problems should I expect and how can we work to lower them?
Getting the most out of your doctor appointment. American Academy of Family Physicians Family Doctor website. Available at: http://familydoctor.org/familydoctor/en/healthcare-management/working-with-your-doctor/tips-for-talking-to-your-doctor.html. Updated January 19, 2018. Accessed September 5, 2018.
Lupus. National Institute of Arthritis and Musculoskeletal and Skin Diseases website. Available at: http://www.niams.nih.gov/Health_Info/Lupus/default.asp. Updated June 30, 2016. Accessed August 31, 2018.
Systemic lupus erythematosus (SLE). EBSCO DynaMed Plus website. Available at:http://www.dynamed.com/topics/dmp~AN~T115873/Systemic-lupus-erythematosus-SLE. Updated July 20, 2018. Accessed August 31, 2018.
Systemic lupus erythematosus (SLE). Merck Manual Professional Version website. Available at: http://www.merckmanuals.com/professional/musculoskeletal_and_connective_tissue_disorders/autoimmune_rheumatic_disorders/systemic_lupus_erythematosus_sle.html. Updated February 2018. Accessed August 31, 2018.
Last reviewed May 2018 by EBSCO Medical Review Board Daniel A. Ostrovsky, MD Last Updated: 9/5/2018