For many newly diagnosed sarcoidosis patients, talking to their doctor can present unusual challenges. For some, the first time they have heard the word 'sarcoidosis' is when they are diagnosed. In addition, some sarcoidosis patients may see more than one doctor to treat their disease.

Good communication with your doctor may mean that your treatment plan is more successful. For doctor visits it is important to remember the FSR PATH to good health: Prepare; Ask Questions; Take Notes; and Honesty is the best policy.

PREPARE: Before you go to the doctor write down a list of questions that you want to ask during your visit. Bring information about tests you have had in the past and medications you are currently taking. Be sure to include any vitamins or alternative treatments you receive.
It is also a good idea to make a list of all new symptoms, even if they do not seem important.

ASK QUESTIONS when you do not understand what your doctor has said or understand the meaning of a word (like granuloma). Patients can also refer to the glossary on this site for help understanding medical terms used with sarcoidosis. Some questions to ask your doctor after you are diagnosed, might include:

What medications or treatments are available to help me?

What are the benefits and side effects of these medications? For example, certain treatments for sarcoidosis may cause the following:

• Bone Loss: The standard treatments for sarcoidosis place many patients at increased risk for the bone-thinning disease osteoporosis. Glucocorticoid, or steroid therapy, (for example, prednisone) can interfere with bone and calcium metabolism. Methotrexate may also cause bone loss because of its effect on the cells that form bone.  For more information about corticosteroids and bone lone, request a free copy of the FSR brochure 'Inflammatory Diseases and Bone Loss'.

• Sleep Disruption: Many people who are diagnosed with sarcoidosis find they cannot sleep because they are worried about their disease. Steroid therapy may also place sarcoidosis patients at substantial increased risk for sleep disruption. Read the FSR Press Release from National Sleep Awareness Week for sleep tips.

How do I know that my treatment program is working? This would include asking about the kinds of tests you might have and what the results mean.

What will happen to me if nothing is done? If you and your doctor agree not to start treatment, ask how your condition will be monitored.

Do I need to see a specialist? If a specialist is suggested, ask why that specific individual or type of doctor has been recommended.

TAKE NOTES: If you are nervous, it may be difficult to listen and understand the information your doctor gives to you. Plan to bring paper and a pen to the visit with you. If you are not able to take notes, ask about bringing a tape recorder or take someone with you. Ask if your doctor has printed information about sarcoidosis.

BE HONEST: Communication is a two-way street. The more information you share, the better your doctor will be able to treat you. Be honest about your lifestyle habits (like smoking), even if you are uncomfortable. If you have repeated feelings of hopelessness, mention it to your doctor. It is common for people with chronic diseases to have clinical depression. The Agency for Healthcare Research and Quality, (AHCPR) part of the US Department of Health and Human Services provides tips for talking with your doctor. For more information visit the Links section of this site under 'Finding a Doctor'.