Sarcoidosis is a disease caused by an abnormal immune system reaction. In patients who have sarcoidosis, clumps of immune cells called granulomas form in the organs. Sarcoidosis can affect any organ, but the condition often begins in the lungs (called pulmonary sarcoidosis).

Symptoms of sarcoidosis depend on which organs are affected. Complications vary in severity, may be life-threatening, and include eye problems, infertility, nervous system damage, painful skin lesions, and scarring in the heart, lungs, and liver. Patients who have sarcoidosis require regular medical care. Treatment depends on the location of the lesions and may include corticosteroids and other medications.

Here are some questions to ask your physician (e.g., pulmonologist) about sarcoidosis. Print this page, check off the questions you would like answered, and take it with you to your doctor appointment. The more you know about sarcoidosis, the easier it will be to make important decisions about your medical care and prevent complications.

Questions to Ask Your Doctor about Sarcoidosis

  • Why do you suspect that I have sarcoidosis?
  • What type and stage of sarcoidosis do you think I have?
  • What is the usual prognosis with patients who have this type and stage of the disease?
  • Is there a cure for my condition?
  • How will having sarcoidosis affect my daily life?
  • What complications are associated with sarcoidosis? What are the symptoms of these complications?
  • What should I do if I experience any of these symptoms?
    Telephone number to call:
  • How can I help prevent these complications?
  • Does having sarcoidosis increase my risk for other medical conditions and diseases? If so, how can I reduce my risk?
  • Do you recommend that I see a specialist to treat my sarcoidosis? Why or why not?
    Telephone number to call:
  • How often should I have medical checkups?
  • What kinds of diagnostic tests will be performed? Will I need imaging tests, laboratory tests, and/or biopsies?
  • How should I prepare for these tests?
  • What are the benefits, risks, and possible complications associated with these tests?
  • How long after these tests will I be able to return to my normal activities?
    Restrictions:

Questions to Ask Your Doctor about Treatment for Sarcoidosis

  • What lifestyle changes can I make to help improve my condition and my chance for recovery?
  • What type of sarcoidosis treatment do you recommend?
  • Why do you recommend this particular treatment?
  • What are the benefits, risks, side effects, and possible complications of this treatment?
  • Will medication(s) be prescribed to treat my sarcoidosis? If so, where can I learn more about these medications?
  • Will I need to be closely monitored while I take these medications?
  • What side effects are associated with these medicines?
  • What symptoms indicate a serious complication or side effect?
  • What should I do if my condition worsens or I experience these symptoms?
    Telephone number to call:
  • About how long will it take for the treatment to begin working?
  • How will we know if the treatment is effective?
  • If this treatment does not work, what other options are available?
  • How long do you expect it to take before my condition improves and/or resolves?
  • How often should I have follow-up examinations?
  • Next Appointment:
    Doctor: Date: Time:

Publication Review By: Stanley J. Swierzewski, III, M.D.

Published: 29 Mar 2009

Last Modified: 02 Oct 2015