Health Library

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 lupus. 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
  • Do I fit the recognized criteria for this diagnosis, or could there possibly be something else that is causing my symptoms?
  • Is there anything unusual about my case?
  • Is there any way to tell how severe my case 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 they 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? Can you refer me?
  • 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?
  • I understand that this is a lifetime disease. Are you willing to manage my care in the long-term?
    • How available will you be when, for instance, I think I am beginning a flare-up?
    • Who are the other members of the treatment team: physical therapists, occupational therapists, vocational counselors, home care nurses, etc?
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?

References

Handout on health: Systemic lupus erythematosus. National Institute of Arthritis and Musculoskeletal and Skin Diseases website. Available at: http://www.niams.nih.gov/Health%5FInfo/Lupus/default.asp. Updated August 2011. Accessed June 28, 2013.
Systemic lupus erythematosus (SLE). EBSCO DynaMed website. Available at: http://www.ebscohost.com/dynamed/what.php. Updated June 13, 2013. Accessed June 28, 2013.
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 November 2010. Accessed June 28, 2013.
Understanding lupus. Lupus Foundation of America website. Available at: http://www.lupus.org/webmodules/webarticlesnet/templates/new%5Flearnunderstanding.aspx?articleid=2231&zoneid=523. Accessed June 28, 2013.