Living with sarcoidosis: Management and Treatment of Sarcoidosis

Management and Treatment

There is no specific cure for sarcoidosis and in a good proportion of patients, the disease goes away (resolves) on its own. If symptoms are not bothersome or life threatening, you and your doctor may elect to monitor your symptoms and delay treatment.

Treatment for sarcoidosis is indicated to manage bothersome symptoms that reduce quality of life (QoL) and to prevent organ damage. When sarcoidosis affects certain organs such as the heart or brain, treatment is usually indicated to prevent severe organ damage or death.

Sarcoidosis is usually treated with medications that modify or suppress the immune system. This is because sarcoidosis is caused by granulomas which are clumps of immune or inflammatory cells which occur as a result of dysregulation or overdrive of the immune system.

What medications are used to treat sarcoidosis?

There are three main classes of medications used to treat sarcoidosis:

  1. Corticosteroids – such as prednisone. These drugs reduce inflammation in the body. Prolonged use of prednisone especially at high doses have been associated with a lot of side effects such as excessive weight gain, acne, diabetes mellitus, high blood pressure, mood swings, cataracts, glaucoma, and osteoporosis. Prednisone doses should be tapered as quickly as possible (usually within 3 months). If you are on high doses of prednisone for over three (3) months, please ask your doctor for alternative therapies.
  2. Immunosuppressive medications – such as methotrexate or azathioprine are considered second-line steroid-sparing medications for patients with sarcoidosis. Use of these medications may allow your doctor to safely reduce the dose of your prednisone while controlling your symptoms and preventing further organ damage. You will need serial monitoring with blood tests while on these medications. Please be sure to tell your doctor if you are pregnant, likely to get pregnant, or if you are breast feeding – because it will affect the choice of medications you are prescribed.
  3. Anti-tumor necrosis factor-alpha inhibitors (anti-TNF-α inhibitors) – such as infliximab are more advanced treatment options for patients with severe and refractory disease. These medications target a specific chemical in your immune system to reduce inflammation and are often given through an infusion into your vein.

How Soon after treatment will I feel better?

This varies anywhere from a few weeks to a few months. It is important that you take your medications as prescribed and report any side effects to your doctor.

How do I take care of myself with sarcoidosis?

The best way to take care of yourself while living with sarcoidosis is to follow the recommendations of your doctor. Take your medications as directed and be sure to discuss any changes in symptoms with your provider.

What are some questions to ask my doctor to guide shared decision making?

  1. What are the benefits of treatment versus monitoring of symptoms ?
  2. What are the side effects of the medications prescribed and how can I avoid them?
  3. Are there any lifestyle changes I should make?