How is pulmonary sarcoidosis treated and managed?

Your specialist may monitor your symptoms for a few weeks or months to see if your symptoms are getting better or worse. They may do some chest X-rays, breathing tests and blood tests during this time.

In the early stages, sarcoidosis symptoms may get better on their own without any treatment. 

You may need treatment if your:

• symptoms are seriously affecting your quality of life - make sure you tell your GP or specialist how much your symptoms are affecting you.
• specialist thinks sarcoidosis could permanently damage your lungs.

There’s currently no cure for pulmonary sarcoidosis, but treatments can improve your symptoms and reduce inflammation in your lungs.  Your specialist will help find the right treatment for you.

Steroids

Steroid tablets such as prednisolone are the most common treatment for pulmonary sarcoidosis.

Your steroid dose can be reduced gradually if your symptoms start to improve. 

Your respiratory specialist will monitor your condition, and you may be able to stop taking your steroids after 6 to 12 months. You may need to take steroids for longer if your symptoms return when your dose is reduced or if you continue to have inflammation. 

Other immunosuppressants

You may be prescribed a different type of immunosuppressant such as azathioprine, methotrexate or mycophenolate.

After you’re diagnosed, you’ll have a review meeting with your specialist team every 3 to 6 months for the first two years. 

You can be seen at your GP surgery if you do not need to take any treatment. Your GP or nurse will ask about your symptoms, and they may do some lung function and blood tests.

If you have chronic pulmonary sarcoidosis, you should have access to specialist respiratory nurses, either in-person or over the phone. They can help:

• monitor your medicine
• manage your fatigue
• prescribe medicine and check for any side effects
• arrange referrals for occupational therapy and pulmonary rehabilitation (PR).

If your symptoms are worse than usual, you could be having a flare-up (exacerbation) of your lung condition.

Flare-ups can happen when you’re stressed or unwell, but they can also happen without a clear reason. They can last from a day to several months.

If your symptoms are getting worse:

• talk to your specialist team for advice, if you're already under the care of a specialist team
• contact your GP - they can refer you to a specialist if needed.

Managing breathlessness

If your sarcoidosis is causing breathlessness that does not go away, breathing techniques can help you feel more in control of your breathing. 

We have more information about managing breathlessness, including techniques, positions and videos to help.

If you’re breathless, your specialist may refer you for pulmonary rehabilitation (PR). You may also be prescribed home oxygen therapy if you have low oxygen levels in your blood.

Managing your cough

A cough that does not go away is one of the main symptoms of sarcoidosis. We know that this can be tiring and affect your daily life.

Let’s Talk About Cough has created a pocket book for people living with a long-term cough. 

Managing your energy levels

There are things you can do to help you feel less tired. You could try to pace, plan and prioritise your tasks to make sure you have enough energy throughout the day.

The Royal College of Occupational Therapists has more information about managing your energy levels. 

Looking after your general health is an important part of managing your sarcoidosis.

Keep active

Staying active can help you manage symptoms and improve your quality of life. We have more information about staying active with a lung condition, including our Keep Active programme for people with lung conditions.  

Pulmonary rehabilitation is an education and activity course designed for people living with lung conditions that make them breathless. Ask your GP, practice nurse or respiratory team about services available in your area.

Stop smoking

If you smoke, stopping is one of the best things you can do for your health. 

Find out more about support and information available to help you quit smoking.

Manage your stress

Living with sarcoidosis can have mental and emotional challenges. Sharing how you feel with your friends, family or a healthcare professional can make a difference. 

Find out more about looking after your mental health.

Eat a well-balanced diet

Eating well and maintaining a healthy weight can help you better manage your sarcoidosis symptoms.

Speaking to other people who are living with lung conditions, who relate with your experiences, can help you build a supportive network. There are help and support networks available to you. 

• Join one of our free online or in-person support groups such as Singing for Lung Health and Harmonica for Lung Health.
• Join our Health Unlocked forum to connect with other people with a lung condition.
• Call our friendly helpline. You can talk to us about any aspect of living with a lung condition.
• Find out more about looking after your mental health and wellbeing when you have a lung condition.

Sarcoidosis UK is a charity dedicated to supporting people with sarcoidosis. They have more information to help you live well with sarcoidosis.