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What is sarcoidosis?

Sarcoidosis, which is also sometimes called sarcoid, is a rare condition where little lumps of cells clump together on your organs - these lumps are called granulomas and cause inflammation. If a lot of them develop, it can start to affect how the organ works.

According to the NHS, 90% of cases affect the lungs, but the condition can develop in any organ, including the skin, eyes, heart, kidneys, nervous system and joints.

The condition is most common in people aged 20 to 40, but it can affect anyone. According to research by Sarcoidosis UK, the condition may be more prevalent in women than men. It is also more common in people who are of African descent, or if you have family history of the condition.

What are the symptoms of sarcoidosis?

The symptoms will vary from person to person and will also depend on which organ is affected. In fact, some people don’t have any symptoms at all, and the condition is found whilst you’re being investigated for something else.

If you do have symptoms, in many cases, they will develop suddenly, but in other cases, they may develop over a longer period of time.

Sarcoidosis of the lungs symptoms

  • Shortness of breath
  • A persistent, dry cough
  • Wheezing
  • Pain or discomfort in the chest

Sarcoidosis of the lymph nodes symptoms

  • Swelling
  • Lumps under your chin, neck, armpits or groin
  • Tenderness

Sarcoidosis of the skin symptoms

  • Round, red lumps on your skin, usually on your on your shins
  • A purple rash on your face
  • Hair loss
  • Small lumps just underneath your skin

Sarcoidosis of the eyes symptoms

  • A red, painful eye
  • Dry, itchy eye
  • Burning sensation
  • Black spots or stringy lines in your vision
  • Sensitivity to light
  • Blurred vision

Sarcoidosis of the heart symptoms

Other symptoms

If it affects another organ in your body, you may have:

  • Kidney stones
  • A general feeling of being unwell
  • A high temperature
  • Unintentional weight loss
  • Depression
  • Painful, sore joints
  • Bone pain

How is sarcoidosis diagnosed?

Diagnosing sarcoidosis is not always straightforward, and may take a while, because many of the symptoms are similar to those of other health conditions.

If it is suspected you could have the condition, you will usually be referred for a number of tests. Depending on which organ is affected, you may need to have:

  • A chest X-ray to check your lungs and lymph nodes
  • A CT scan to look at your lungs in more detail
  • A spirometry to check on your breathing ability
  • Endoscopy
  • A biopsy to look at the granulomas under a microscope
  • EGC to look at the electrical activity of your heart
  • Blood tests to check for inflammation in your body, and to look at your liver and kidney function

As we mentioned, the tests you need will be dependent on the type of sarcoidosis you have. A GP will be able to explain what you need and what they will be checking for.

What causes sarcoidosis?

Although the exact cause of sarcoidosis is not fully understood, it is believed that it is an autoimmune condition, which happens when your immune system does not work properly.

Your immune system mistakenly attacks healthy cells in your body, leading to the inflammation, which causes the granulomas to develop. It’s not known why this happens in some people, but there may be environmental triggers that can cause the immune system to react this way.

The condition can also run in families, which suggests there may be some genetic links too, though more research is needed into the causes of sarcoidosis.

What is the treatment for sarcoidosis?

Medication isn’t always needed to treat sarcoidosis. Often, it’ll get better on its own over time.

If you have symptoms, they can often be treated with regular painkillers, and a GP or specialist will usually monitor your condition with regular testing.

If you have severe symptoms, or if your condition doesn’t improve, you may need treatment. If so, a doctor or specialist will be able to take you through the treatment options that are available to you. This may include:

  • Steroids - this is the most common treatment and aims to reduce the inflammation caused by sarcoidosis. It’s likely you’ll start on a high dose, before it’s reduced to a milder dose, often over a period of a couple of years.
  • Immunosuppressants - If steroids do not manage to get your symptoms under control, or if you can’t take them for some reason, then immunosuppressants may be prescribed. These suppress the activity of your immune system.

In very rare cases, the condition can lead to scarring on your lungs, which may need surgery, including heart and lung transplants, however, like we said, this is very rare.

If the condition affects your heart, causing irregular beating, a pacemaker may be fitted. Again, this is very rare.

See a GP online

If you’re having symptoms of sarcoidosis, you can speak to one of our caring GPs online, whenever it suits you. They’re available 7 days a week, 365 days a year. They can listen to your symptoms and recommend your next steps.