Living with lung complications of sarcoidosis

Abstract

Sarcoidosis is an inflammatory condition that can affect any part of the body, but most commonly affects the lungs. Many people with lung (pulmonary) sarcoidosis have manageable disease that does not impact them in the long term. However, some patients with pulmonary sarcoidosis develop complications that cause long-term (chronic) symptoms, such as shortness of breath and cough. These symptoms impair quality of life and may impair a person's ability to complete everyday activities at work and at home. Complications of pulmonary sarcoidosis also worsen the outcome of the disease (prognosis). It is important for patients with sarcoidosis to be aware of the journey that they may face with the disease so that they can better understand their condition and be part of decisions about their care. This article, co-authored by an experienced clinician and a patient, provides information for patients living with pulmonary sarcoidosis.

Tweetable abstract

Sarcoidosis may lead to pulmonary complications, such as lung fibrosis, bronchiectasis or pulmonary hypertension. Understanding how these complications are diagnosed and treated helps patients be part of decisions about their case.

Executive summary

Objective

• This article provides information to help patients understand how pulmonary sarcoidosis is diagnosed and the journey that patients may have following its diagnosis.

What is sarcoidosis?

• Sarcoidosis is a rare disease involving the immune system that can affect multiple organs at the same time.

How is sarcoidosis diagnosed?

• Diagnosing sarcoidosis is complicated and requires several types of tests, which means that getting a diagnosis can take time.

How might sarcoidosis affect the lungs?

• The lung is the organ that is most commonly affected by sarcoidosis. The lung tissue, airways, lymph nodes, and rarely, the lining of the lungs may be affected.

What are the symptoms of pulmonary sarcoidosis?

• Some patients with pulmonary sarcoidosis have no symptoms, but others experience shortness of breath or cough.

What is the prognosis of pulmonary sarcoidosis?

• The course of pulmonary sarcoidosis is highly variable. Most people have mild disease that gets better with time or treatment, but a small group of patients have disease that worsens (progresses) over time.

What are the potential complications of pulmonary sarcoidosis?

• Potential complications of pulmonary sarcoidosis include scarring (fibrosis) of the lungs, dilation of the airways (bronchiectasis), narrowing of the airways (stenosis), fungal infections, and high pressure in the blood vessels of the lungs (pulmonary hypertension).

How is pulmonary sarcoidosis treated?

• The best treatment for pulmonary sarcoidosis depends on factors such as which part of the lungs are affected, how severe the symptoms are, and if the disease is stable or worsening.

Where can patients get reliable information?

• Patients with pulmonary sarcoidosis can obtain more information about their condition from their doctor or patient groups.

Future perspective

• The coming decades will provide greater understanding of how sarcoidosis develops and why it presents differently in individual patients. There are several trials underway looking at whether new drugs can help prevent or treat pulmonary sarcoidosis.

Keywords: :

• lung disease
• interstitial
• pulmonary fibrosis

Financial disclosures

D Patel is an employee of Boehringer Ingelheim Pharmaceuticals, Inc. The authors have no other relevant affiliations or financial involvement with any organization or entity with a financial interest in or financial conflict with the subject matter or materials discussed in the manuscript apart from those disclosed.

Competing interests disclosure

The authors have no competing interests or relevant affiliations with any organization or entity with the subject matter or materials discussed in the manuscript. This includes employment, consultancies, honoraria, stock ownership or options, expert testimony, grants or patents received or pending, or royalties.

Writing disclosure

Editorial support was provided by Wendy Morris of FleishmanHillard, London, UK, which was contracted and funded by Boehringer Ingelheim Pharmaceuticals, Inc. Boehringer Ingelheim was given the opportunity to review the article for medical and scientific accuracy as well as intellectual property considerations.

Acknowledgments

The authors meet criteria for authorship as recommended by the International Committee of Medical Journal Editors (ICMJE). The authors did not receive any payment for their work on this article. The scientific content of the article was controlled by Divya Patel. A patient's perspective was provided by Kathryn Washington.