Cryptogenic organising pneumonia (COP)

Cryptogenic organising pneumonia (COP) happens when the small airways and tiny air sacs in your lungs become inflamed for no clear reason. If the cause of your condition is known, it’s called secondary organising pneumonia.

Inflammation is part of your body’s healing process. It helps you fight off infections and heal from injuries. But sometimes this reaction can affect parts of your body, like your lungs.

COP is a type of interstitial lung disease (ILD). Although COP has pneumonia in its name, it’s not an infection. It cannot be passed on to others. Read more about ILDs and how they affect your lungs. 

We do not know what causes COP. But your risk of COP may be higher if you:

• are aged between 50 and 60 years old, although COP can happen at any age
• have an inflammatory or autoimmune disease like lupus, rheumatoid arthritis or scleroderma
• take certain medications including antibiotics, anti-inflammatory and chemotherapy (cancer treatment) drugs
• have had a lung transplant.

Symptoms of COP are similar to symptoms of pneumonia and flu. But unlike pneumonia, they usually develop gradually over several months. 

Sometimes symptoms begin after having an infection such as flu, bronchitis or a chest infection.

The most common symptoms are:

• a dry cough
• feeling breathless
• a sudden high temperature (38 degrees Celsius or above) or chills - you might sweat or shiver
• unexplained weight loss
• muscle aches and pains.

Tell your GP if you have any new or worsening symptoms.

Your GP will ask about your symptoms and medical history. 

They may refer you to a specialist for tests to help confirm your diagnosis:

• a chest X-ray or CT scan to take a detailed picture of your lungs – this will show if you have any changes on your lungs
• blood tests – these check for an infection or inflammatory condition as COP treatments can make an infection worse
• lung function tests – these are breathing tests to show how well your lungs are working
• a bronchoscopy – this is where a small flexible tube is passed down into your lungs to take samples of cells and fluid from your lungs for testing. You may have this if your CT scan pictures are not clear.

It may take some time to get a COP diagnosis. Your GP will want to rule out pneumonia and any other conditions which cause similar symptoms. 

Read more about how ILDs are diagnosed.

Some people do not need treatment because mild symptoms can improve on their own. If you do not need treatment, monitor your symptoms and contact your GP or specialist if your symptoms get worse.

If you need treatment, the length of treatment is different for everyone. Symptoms can start to improve within a week. Most people make a full recovery after 6 to 12 months of treatment.

Steroids

Corticosteroids are the main treatment for COP. Prednisolone is the most common type. These steroids are copies of the ones that your body makes naturally. 

They’re usually given in a tablet to reduce inflammation in your lungs. If you need a stronger steroid, it may be given through a vein (intravenously).

Some people get symptoms again when the steroid treatment is reduced or stopped. If this happens, your medicine may be changed to another type of immunosuppressant. 

Always talk to your GP or specialist before stopping any steroids you’ve been prescribed. 

Immunosuppressants

Our bodies fight infections with an immune response. Sometimes the immune response can be triggered even if there’s no infection. It can also react too strongly to fighting an infection. This can cause damage to your body.

In these cases, immunosuppressants like azathioprine can calm your immune system and help control inflammation. But this can also mean that your immune system becomes weaker.

You're more likely to get an infection if you have a weaker immune system. Find out what you can do to reduce your risk of getting an infection.

Pulmonary fibrosis

Pulmonary rehabilitation (PR) is an education and activity course designed for people living with lung conditions that can help you manage symptoms like breathlessness. 

The exercises can help you make your muscles stronger, so you can use them oxygen you breathe more efficiently. PR also has lots of other benefits, like improving your mental wellbeing.

If you’re suitable for PR, your healthcare professional can refer you. The sessions are usually held in local hospitals, community halls and health centres. Some programmes have waiting lists, so try to speak to your GP about it as soon as you can. 

We also have more information about how to manage breathlessness and other ways of being active.

COP generally has a very good outlook, but it can take several weeks or months to make a full recovery. 

In very rare cases, ongoing inflammation may lead to permanent scarring of your lungs. This is known as pulmonary fibrosis. Most people with COP do not develop pulmonary fibrosis.

Find out how to manage your ILD while staying healthy and living as well as you can.

We know that living with an ILD can be hard sometimes. If you’re struggling with your mental health, it’s important to talk to someone you trust about how you’re feeling.

You can find help and support through our:

• support groups - we have many online and in-person support groups for people with lung conditions
• online communities on Health Unlocked to connect with other people with similar experiences
• helpline - you can talk to our friendly helpline about any aspect of your lung condition.