• Talking to Your Doctor About Systemic Lupus Erythematosus

    You have a unique medical history. Therefore, it is essential to talk with your doctor about your personal risk factors and/or experience with systemic lupus erythematosus (SLE). By talking openly and regularly with your doctor, you can take an active role in your care.

    General Tips for Gathering Information

    Here are some tips that will make it easier for you to talk to your doctor:
    • Bring someone else with you. It helps to have another person hear what is said and think of questions to ask.
    • Write out 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. Ask for clarification, if necessary.
    • Don't be afraid to ask your questions or ask where you can find more information about what you are discussing. You have a right to know.

    Specific Questions to Ask Your Healthcare Provider

    About SLE
    • Could my symptoms be caused by something else?
    • Is there anything unusual that I need to know?
    • Is there any way to tell how severe my symptoms will become?
    • How safe would it be for me to get pregnant? Would my baby be at increased risk?
    About Your Risk of Developing SLE
    There is a history of SLE in my family. Does that increase my risk of SLE?
    About Treatment Options
    • Which medications do you recommend that I take?
    • What side effects and benefits can I expect from these medications?
    • Will medications affect fertility? Can they be used during pregnancy? Do I need to use birth control while I’m on these medications?
    • How soon will I experience relief from these medications?
    • Will I take medications all the time or only when I have a flare-up?
    • Is standard treatment my best choice, or should I look into enrolling in a clinical trial?
      • Will you help me find clinical trials and discuss them with me?
    • Are there other specialists that I should be seeing?
    • Are there things I can do to prevent flare-ups and complications?
    • Are there any complementary or alternative therapies I should consider?
    About Lifestyle Changes
    • What disabilities can I expect, and in what ways can I prepare for them?
    • What social support should I consider?
    • How long will flare ups interfere with my everyday life?
    About Your Outlook
    • What can I tell my family and friends about my conditions?
    • How will this affect my roles and relationships with my children, family, friends, and coworkers?
    • What complications should I expect and how can we work to minimize them?


    Lupus. National Institute of Arthritis and Musculoskeletal and Skin Diseases website. Available at: http://www.niams.nih.gov/Health%5FInfo/Lupus/default.asp. Updated February 2015. Accessed May 17, 2016.

    Systemic lupus erythematosus (SLE). EBSCO DynaMed Plus website. Available at:http://www.dynamed.com/topics/dmp~AN~T115873/Systemic-lupus-erythematosus-SLE. Updated September 15, 2016. Accessed October 6, 2016.

    Systemic lupus erythematosus (SLE). Merck Manual Professional Version website. Available at: http://www.merckmanuals.com/professional/musculoskeletal%5Fand%5Fconnective%5Ftissue%5Fdisorders/autoimmune%5Frheumatic%5Fdisorders/systemic%5Flupus%5Ferythematosus%5Fsle.html. Updated June 2013. Accessed May 16, 2016.

    Tips for talking to your doctor. 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 May 2014. Accessed May 17, 2016.

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