Living with Sarcoidosis

Sarcoidosis is a disease that can injure the lungs and eyes or other organs, and cause sensitive rashes. No one knows what ultimately triggers sarcoidosis, but the disease is characterized by an unusually active immune system. Clusters of immune cells, known as granulomas, can invade the lungs and other organs, causing damage.

For most patients, sarcoidosis resolves by itself within a few years of symptoms first appearing and does not return. For others it can be chronic and lifelong.

Regardless, the condition can be challenging to live with, especially when its symptoms are at their peak. Depending on the organs affected, these symptoms can include shortness of breath and chronic coughs, enlarged lymph nodes, skin irritations, weight loss, and fatigue.

A number of treatments, lifestyle changes, and the use of support groups can help patients to better manage their disease.

Treatments

Medications like anti-inflammatory painkillers and steroids, which also reduce inflammation, as well as those that work to suppress the immune system can be effective in controlling sarcoidosis symptoms.

Anti-malarial medications, such as chloroquine and hydroxychloroquine, have also proven effective in treating hypercalcemia caused by sarcoidosis. Hypercalcemia is abnormally high levels of calcium in the blood, and can lead to bone or kidney problems. 

Anti-TNF medications, such as Remicade (infliximab) and Humira (adalimumab) that are usually used for treating rheumatoid arthritis may also be effective in treating sarcoidosis symptoms. TNF is a cell-signaling protein that plays a role in the formation and maintenance of granulomas. These medications, however, are generally only given to patients whose disease fails to respond to other treatments.

Use of many of these medications must be monitored carefully by doctors to control side effects, and patients taking them will need to undergo routine checks with their healthcare provider.

Lifestyle changes

There are a number of lifestyle changes that people with sarcoidosis can adopt to ease their condition. These include quitting smoking, getting sufficient sleep, and exercising regularly. It is also important to avoid common infections by keeping immunizations up-to-date and avoiding contact with people with contagious infections.

If sarcoidosis is causing hypercalcemia, patients may be advised to avoid foods rich in calcium, as well as excessive sun exposure, as activities like sunbathing promotes vitamin D production, which increases calcium levels in the blood.

Some diets are thought to have anti-inflammatory effects. Because sarcoidosis is a characterized by excessive inflammation, diets like the Mediterranean diet and the DASH diet, among others, may be helpful in reducing symptoms. Common features of these diets are high levels of antioxidants, healthy fats, and fibers, and low intake of sugars and simple carbohydrates.

Getting support

Any chronic illness, including sarcoidosis, can cause episodes of depression and/or anxiety in patients. It is important for people experiencing these symptoms to discuss them with their healthcare providers. 

It may also be helpful for patients and caregivers to connect with others dealing with sarcoidosis. There are a number of organizations that foster these connections, and help direct sarcoidosis patients to resources. These include the Lung Association’s Living with Lung Disease Support Community, the Foundation for Sarcoidosis Research, the Bernie Mac Foundation, and the Sarcoidosis Network Foundation.

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Sarcoidosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.