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SARCOIDOSIS AND THE LUNGS

Sarcoidosis can occur in any organ of the body. In about 90% of patients, sarcoidosis affects the lungs and / or lymph glands. This is also known as ‘pulmonary sarcoidosis’. The information on this page is for anyone affected by pulmonary sarcoidosis.

The information on this page has been compiled with the help of sarcoidosis specialist Prof S. Birring, Consultant Respiratory Physician at Kings College Hospital, London and Prof L.P. Ho, Respiratory Physician at Oxford University NHS Foundation Trust.

Function of the Lungs and Sarcoidosis

The lungs transfer oxygen from the air we breathe into the blood. At the same time, carbon dioxide leaves the blood through the lungs. This exchange happens in the lungs.

In pulmonary sarcoidosis, abnormal immune cells (known as ‘granuloma’) gather in the lungs and disrupt the uptake of oxygen.

These granuloma can also result in scarring. Scarring prevents the lungs stretching fully, and therefore limits their capacity. This in turn leads to loss of fully functional lung tissue and, eventually, shortness of breath.

In addition, these granuloma may develop around the lymphatic (or ‘lymph’) system of the lungs. The lymph system is an important part of the immune system that circulates the immune cells in the body.

 

Symptoms of Lung Sarcoidosis

Sometimes, the symptoms of pulmonary sarcoidosis start suddenly and don’t last long. In other patients, the symptoms may develop gradually and last for many years.

Some people don’t have any symptoms at all and are told they have sarcoidosis after having a routine chest x-ray or other investigations.

Common symptoms of pulmonary sarcoidosis include:

  • fatigue and feeling ‘washed out’
  • shortness of breath, especially with exercise
  • dry and persistent cough
  • chest pain

You may read that consultants classify sarcoidosis into the ‘Stages of Sarcoidosis’. In reality this is a rarely used technique by clinicians in the UK.

Living with Pulmonary Sarcoidosis

Sarcoidosis affects people very differently – each case is unique. However there are some shared experiences for those living with sarcoidosis.

It is common that patients with sarcoidosis may feel tired and lethargic (fatigued), lose weight or suffer with fevers and night sweats.

Sometimes symptoms may suddenly get worse – this is known as a ‘flare-up’. This may be triggered by stress, infections, a change in environment or, often, nothing recognisable.  

It is important to make sure you eat healthily, pace yourself and talk to friends and family about your sarcoidosis. You should discuss your condition early on with your employer – use the SarcoidosisUK Leaflet Information for Employers.

Sarcoidosis can leave patients feeling scared and isolated – recognise mental health problems early and seek support. Please contact SarcoidosisUK or your GP for professional support.

Techniques to Understand your Condition

Sarcoidosis can be difficult to diagnose, particularly if the symptoms aren’t obvious. Multiple tests or scans may be needed to make a diagnosis.

X-rays can give a picture of lung abnormalities. Generally, if abnormalities are found, additional tests are performed to confirm any diagnosis.

Lung Function Tests. Spirometry tests how well you breathe in and out. Lung volume tests measure the total size of your lungs. Gas transfer tests measure the amount of oxygen that passes from your lungs into your blood.

CT scan (also called CAT scan or computed tomography) combines X-rays and computer technology to create detailed images of the inside of your body.

MRI scans use magnetic fields and radio waves. They show some abnormal tissue clearer than CT scans. MRI is rarely used with the lungs but may be useful to check if other organs like the bones and heart are affected.

Bronchoscopy. Your doctor may use a thin flexible camera inserted through your mouth to examine your lungs for signs of sarcoidosis. They may then remove tiny amounts of lung or lymph nodes to help make a diagnosis (a biopsy).

In rare cases, surgery is required to obtain a biopsy. This technique is often used when doctors want to be sure to confirm the disease as sarcoidosis. The most common technique for this is called VATS (video-assisted thoracoscopic surgery).

The Outlook

Sarcoidosis affects people differently and often follows an unpredictable course. Most patients with pulmonary sarcoidosis recover within a few years; sometimes no treatment is needed.

Some patients are more severely affected with symptoms worsening over time – more prolonged treatment may be necessary. This is known as chronic sarcoidosis.  

Treating Pulmonary Sarcoidosis

There is no cure for sarcoidosis. When treatment is required, its purpose is to prevent lung inflammation and scarring, worsening of the disease and to improve quality of life. Treatment can help relieve the symptoms as the disease runs its course.

Many patients experience side-effects from medication. You will discuss with your doctor the best treatment regime for you; regular check-ups may be necessary.

Corticosteroids (commonly called prednisolone) may be used for a year or more. These drugs act to suppress the disease. A high dose is usually prescribed at the start of the treatment, before being reduced to a ‘maintenance dose’.

NSAIDS (Non-steroidal Anti-Inflammatory Drugs) are anti-inflammatory drugs similar to aspirin; they are also mild painkillers. They are often used to reduce pain (e.g. joint pain).

Methotrexate and Azathioprine can be given in combination with corticosteroids for those with more severe sarcoidosis.

Page last updated: August 2019. Next review: August 2021.

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