Sarcoidosis affects people in very different ways. For most people, the condition goes away within a few years, but for some it comes and goes over a longer period. For a small number of people, sarcoidosis gets worse over time.
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What can I expect?
Most cases of sarcoidosis are acute, which means they start and stop quickly. For most people, sarcoidosis will go away within two years at most.
Some people with sarcoidosis have flare-ups. This is when your symptoms suddenly get worse. Sometimes flare-ups are triggered by stress or illness, but they can also happen for no obvious reason.
Flare-ups can last from a day to several months. During a flare-up, it’s very important to look after your physical and mental health. You should talk to your GP if you are struggling with a flare-up, and they should refer you to specialists. If you’re under the care of a sarcoidosis clinic, you should talk to your specialist doctor about how to manage flare-ups.
Sarcoidosis can affect many parts of the body and it’s possible for it to develop in places that had not been affected before. But most sarcoidosis flare-ups happen in the part of your body where it first started, with the same symptoms.
How can sarcoidosis affect you over time?
Most people who have sarcoidosis get better and can have an active life. But in some cases, chronic sarcoidosis gets worse over months or years. In these cases, there can be permanent damage to the affected parts of the body. In a very few cases, people with chronic sarcoidosis that affects the lungs or heart die from the condition.
About 1 in 5 people with sarcoidosis develop scarring of the lungs, known as pulmonary fibrosis. This usually happens when people have had sarcoidosis for a long time already.
In some cases, the inflammation that leads to scarring can be treated successfully, but this is not always the case. Pulmonary fibrosis can cause coughing, wheezing and breathlessness. We have information and support for people living with pulmonary fibrosis.
If you have chronic sarcoidosis, you should have access to specialist respiratory nurses, either in-person or over the phone. They can help with monitoring your medicine, managing side effects, and accessing the care you need.
Further information and support
We run support groups for all people with lung conditions, as well as an online community forum.
The charity SarcoidosisUK is dedicated to supporting people with sarcoidosis. Their website contains information about sarcoidosis including FAQs. They run a nurse helpline and support groups, both online and in person. Find out more about the support they offer.
For more advice about sarcoidosis, call our friendly Helpline team on 0300 222 5800, 9am-5pm, Monday-Friday (excluding Bank Holidays).