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Talking to Your Doctor About Systemic Lupus Erythematosus
General Tips for Gathering Information
- 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
- 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?
- 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?
- 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?
- 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?
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. 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.
- Reviewer: Michael Woods, MD
- Review Date: 05/2014
- Update Date: 05/07/2014