Sarcoidosis 

Introduction 

The lungs are affected in most people with sarcoidosis 

Shortness of breath

Why you should see a doctor if you're feeling breathless

Sarcoidosis is a rare condition that causes small patches of red and swollen tissue, called granulomas, to develop in the organs of the body. It most often affects the lungs and skin.

Typical symptoms include tender, red bumps on the skin, shortness of breath and a persistent cough. However, every person is affected differently and symptoms depend on which organs are affected.

There's no cure for sarcoidosis, but the condition often improves without treatment within a few months or years. The symptoms are not usually severe and don't tend to affect everyday life.

Sarcoidosis is estimated to affect about 1 in every 10,000 people in the UK.

Symptoms of sarcoidosis

It's impossible to predict how sarcoidosis will affect a person, as the condition can affect any organ and the symptoms vary widely depending on which organs are involved. 

Most people with sarcoidosis develop symptoms suddenly, but they usually clear within a few months or years and the condition doesn't come back. This is known as acute sarcoidosis.

Some people do not have any symptoms at all, and the condition is diagnosed after an X-ray carried out for another reason.

A few people find that their symptoms develop gradually and get worse over time, to the point where they become severely affected. Lots of granulomas may form in an organ and prevent it from working properly. This is known as chronic sarcoidosis.

Sarcoidosis most often affects the lungs, skin and/or lymph nodes (glands). Some of the typical symptoms are listed below, although someone with sarcoidosis will probably only have a few of these.

Lung symptoms

The lungs are affected in about 90% of people with sarcoidosis. This is known as pulmonary sarcoidosis.

The two main symptoms are shortness of breath and a persistent dry cough. Some people with pulmonary sarcoidosis experience pain and discomfort in their chest, but this is uncommon.

Skin symptoms

The skin is affected in about 25% of people with sarcoidosis.

This can cause tender, red bumps or patches to develop on the skin (particularly the shins), as well as rashes on the upper body.

Other symptoms

If other organs are affected, you may also have some of the following symptoms:

Causes of sarcoidosis

The body's immune system normally fights off infections by releasing white blood cells into the blood to isolate and destroy the germs. This results in inflammation (swelling and redness) of the body tissues in that area. The immune system responds like this to anything in the blood it doesn't recognise, and dies down when the infection has been cleared.

It is thought that sarcoidosis happens because the immune system has gone into "overdrive", where the body starts to attack its own tissues and organs. The resulting inflammation then causes granulomas to develop in the organs.

There are many similar conditions, such as rheumatoid arthritis and lupus, that are caused by the body attacking its own tissues. These are collectively known as autoimmune conditions.

It is not known why the immune system behaves like this, but research is being carried out to see what triggers sarcoidosis (search clinical trials for sarcoidosis).

It's possible that some environmental factor triggers the condition in people who are already genetically susceptible to it.

Sarcoidosis can occasionally occur in more than one family member, but there's no evidence that the condition is inherited. The condition is not infectious, so it cannot be passed from person to person.

Who is affected

Sarcoidosis can affect people of any age, but usually starts in young adults aged between 20 and 50. It is rare in childhood.

The condition affects people from all ethnic backgrounds, but it's most common in people of African descent.

Diagnosing sarcoidosis

A number of different tests may be carried out to diagnose sarcoidosis, depending on which organs are affected.

If your symptoms suggest you have pulmonary sarcoidosis (sarcoidosis affecting the lungs), you may have a chest X-ray or a computerised tomography (CT) scan of your lungs to look for signs of the condition.

In some cases, doctors may want to examine the inside of your lungs using a long, thin, flexible tube with a light source and a camera at one end (endoscope) that is passed down your throat. A small sample of lung tissue may also be removed during this test so it can be studied under a microscope. This is known as a biopsy.

If doctors think you may have sarcoidosis affecting other organs – such as the skin, heart or eyes – scans or examinations of these areas will usually be carried out.

How sarcoidosis is treated

Most people with sarcoidosis do not need treatment as the condition often goes away on its own, usually within a few months or years.

Simple lifestyle changes and over-the-counter painkillers (such as paracetamol or ibuprofen) to treat any pain are often all that is needed to control any flare-ups. See living with sarcoidosis (below) for lifestyle advice.

Doctors will monitor your condition to check if it's getting any better or worse without treatment. This can be done with regular X-rays, breathing tests and blood tests.

Medication

If treatment is recommended, prednisolone corticosteroid tablets are usually used.

This medication is the most effective treatment for sarcoidosis, helping to relieve symptoms and prevent damage to affected organs by reducing inflammation and preventing scarring.

However, corticosteroid medication can cause unpleasant side effects such as weight gain and mood swings if taken in high doses. Other side effects, such as weakening of the bones (osteoporosis), can also develop if it is taken for a long time. Therefore, this medication is only used when necessary. 

You may initially be given a high dose of steroid medication for a short period of time, before switching to a low dose for the months or years that follow. Your condition will be monitored during this time to see how well the treatment is working.

In some cases, taking calcium or vitamin D supplements can help reduce the risk of osteoporosis caused by long-term use of steroid medication. However, you should only take these if advised by your doctor because in some people with sarcoidosis they may increase the risk of developing complications, including kidney stones.

Alternative medications may sometimes be used if steroids are not enough or there are concerns about side effects. In these cases, a type of medication called an immunosuppressant might be recommended. These medications may help to improve your symptoms by reducing the activity of your immune system.

Living with sarcoidosis

The Sarcoidosis Charity recommends the following lifestyle measures if you have sarcoidosis:

  • stop smoking, if you smoke
  • avoid exposure to dust, chemicals, fumes and toxic gases
  • eat a healthy balanced diet 
  • drink plenty of water
  • get plenty of exercise and sleep

Find a sarcoidosis support group

Outlook

Symptoms of sarcoidosis may come and go, and can usually be managed with over-the-counter painkillers so they don't affect everyday life. Most people with the condition find their symptoms have disappeared within a few years of their diagnosis.

For some people with sarcoidosis, the condition slowly gets worse over time and they end up with organ damage. For example, their lungs may stop working properly, causing increasing breathlessness.

Help is available for people with severe, persistent sarcoidosis – ask your doctor for advice and visit The Sarcoidosis Charity (which has a list of support groups) or the British Lung Foundation websites.

Page last reviewed: 21/10/2013

Next review due: 21/10/2015

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Comments

The 6 comments posted are personal views. Any information they give has not been checked and may not be accurate.

Emmarelle said on 21 September 2014

I was diagnosed with sarcoidosis in about 1972. Red lumps appeared on my legs one morning which I thought may have been insect bites having sat on the grass the previous day watching school sports - doctor's comment was " bloody big insects " . I was also feeling very, very tired. Six weeks bed rest and aspirin were prescribed, to which I gave a cynical laugh as I had three children and a husband working 24 / 7. I never had the bed rest or took aspirin but after six weeks or so I was feeling better.
Recently I learned that Sarcoidosis is associated with Tuberculosis. My husband had had T.B. when he was 17. This led to having one lung collapsed and some ribs removed at the King George V hospital in Surrey around 1941. Both his parents had died of T.B. In their 30's in the early 1930's. My husband led a healthy, outdoor life afterwards away from London and lived till he was 65 having had a stroke 10 years earlier.

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Emmarelle said on 21 September 2014

I was diagnosed with Sarcoidosis around 1972. Red lumps appeared on my shins one morning. As I had been sitting on some grass watching school sports the day before I thought they were insect bites - doctor's comment was " bloody big insects! ". I also felt very, very tired.
I was prescribed bed rest for 6 weeks and advised to take aspirin if required. With 3 children and a husband working 24 / 7 I remember giving a cynical laugh!. Never got that bed rest and never took aspirin. The tiredness continued for weeks but I did recover without further problems.
I recently learned that there is a connection between Sarcoidosis and Tuberculosis. My husband and his parents ( who died in their 30's ) had had this disease
( T.B. ) and he had had one lung collapsed and some ribs removed when he was 18 in the early 1940's at the King George V hospital in Surrey. He lived a healthy, outdoor life afterwards and never told anyone, except me about this.

Report this content as offensive or unsuitable

Emmarelle said on 21 September 2014

I was diagnosed with Sarcoidosis around 1972. Red lumps appeared on my shins one morning. As I had been sitting on some grass watching school sports the day before I thought they were insect bites - doctor's comment was " bloody big insects! ". I also felt very, very tired.
I was prescribed bed rest for 6 weeks and advised to take aspirin if required. With 3 children and a husband working 24 / 7 I remember giving a cynical laugh!. Never got that bed rest and never took aspirin. The tiredness continued for weeks but I did recover without further problems.
I recently learned that there is a connection between Sarcoidosis and Tuberculosis. My husband and his parents ( who died in their 30's ) had had this disease
( T.B. ) and he had had one lung collapsed and some ribs removed when he was 18 in the early 1940's at the King George V hospital in Surrey. He lived a healthy, outdoor life afterwards and never told anyone, except me about this.

Report this content as offensive or unsuitable

Emmarelle said on 21 September 2014

I was diagnosed with Sarcoidosis around 1972. Red lumps appeared on my shins one morning. As I had been sitting on some grass watching school sports the day before I thought they were insect bites - doctor's comment was " bloody big insects! ". I also felt very, very tired.
I was prescribed bed rest for 6 weeks and advised to take aspirin if required. With 3 children and a husband working 24 / 7 I remember giving a cynical laugh!. Never got that bed rest and never took aspirin. The tiredness continued for weeks but I did recover without further problems.
I recently learned that there is a connection between Sarcoidosis and Tuberculosis. My husband and his parents ( who died in their 30's ) had had this disease
( T.B. ) and he had had one lung collapsed and some ribs removed when he was 18 in the early 1940's at the King George V hospital in Surrey. He lived a healthy, outdoor life afterwards and never told anyone, except me about this.

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absynth said on 12 September 2014

I was diagnosed with neuro sarcoidosis in 2010 after spending around 10 weeks in hospital having every test under the sun. My symptoms started with fatigue, night sweats, loss of balance. I was treated for depression by my Doctor ( which isnt uncommon ) . One day I woke up and lost all muscle control on the left side of my face... so I went to hospital. Eventually my diagnosis came in and was given steroids, which made me feel allot better and was out of hospital within a week. Unfortunately I got some horrible side affects form the steroids including the common weight gain.. but I also got Osteoporosis in my shoulder causing Avascular Necrosis on my shoulder ball joint which basically has stopped me from doing archery ( im a archery coach). I keep getting symptoms coming and going 4 years on which can last from a few days to a few months. Its a nasty thing to have yes, but life is managable once you know what it is. I hope they find out what causes it one day...

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stevo62 said on 23 June 2014

my elderly mum has had sarcoidosis for a lot of years and been on medication for it, recently she has developed huge red rashing around both sides of her neck including blisters, they have changed the medication but it seems to have got worse and the doctor has told her to stop the medication

Stevo

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