Sarcoidosis

WHAT IS MEANT BY SARCOIDOSIS?

Sarcoidosis is an unusual disease that affects approximately 10-20 people in every 100,000 of the population, and is very common in Ireland. The illness may affect any part of the body, but most commonly affects the lungs, eyes and skin, in combination or on their own. There is inflammation in the affected organs, but what triggers this inflammation is not known. Some experts think that it is caused by an unusual infection, but no definite virus or bacteria has ever been identified. Sarcoidosis cannot be caught from, or spread to, other people. We do know that there are changes in the number and type of immune defence cells in the affected organs, compared to normal people. The inflammation sometimes disappears of its own accord, or with medications. Sometimes, however, the inflammation can progress and lead to scarring in the affected organ. The aim of treatment is to prevent this.

HOW DOES SARCOIDOSIS AFFECT PEOPLE?

Sarcoidosis is a strange disease in that it varies greatly in the type of illness it can cause. It is usually a mild illness, and lasts for a short time period (weeks or months). Indeed, some people can get a form of sarcoidosis so mild that they never realise they had it. Rarely, the illness can be more serious, and last for a longer period of time (years)
As stated above, sarcoidosis may affect different body parts, alone, or in combination. The most common way it affects people is with joint pains, tiredness, painful red lumps on the skin of the legs and enlarged lymph glands. These enlarged glands may be felt in the neck, under the armpit or in the groins. Sometimes the enlarged glands occur inside the chest near the lungs, and cannot be felt, but are visible on a chest x-ray. When sarcoidosis presents in this way, the illness is usually short, with a very good outlook. The lungs are often affected by sarcoidosis, but the patient may experience no symptoms at all. However, breathlessness, dry cough and chest pains are common complaints. Sarcoidosis can cause inflammation in the eyes, causing a gritty feeling in the eye, or blurring of vision. Sometimes, symptoms can be very vague, with tiredness, mild weight loss and general aches and pains being common. Salts in the blood can be affected, the most common being a high level of calcium. Rarely, sarcoidosis can affect other organs such as the heart or brain. This is extremely unusual.

HOW DO DOCTORS DIAGNOSE SARCOIDOSIS?

Often, doctors recognise sarcoidosis from the combination of symptoms a person has. If there is any doubt about the diagnosis, the doctor will need to carry out some tests. A chest x-ray is usually done, and may show large glands near the lungs, or abnormal shadowing in the lungs themselves. Blood tests are usually required. Breathing tests are often performed to see how the lungs are working. A special scan of the lungs, called a CT scan, may be required to give more detailed pictures of the lungs. The best way to confirm the diagnosis is to get a piece of tissue, called a biopsy, from an affected part of the body. This can then be examined under a microscope to look for the typical abnormalities seen in sarcoidosis. The biopsy is often obtained from the lungs, as these are often affected. This biopsy is usually obtained by passing a small tube down the nose or mouth, into your lungs, while you are gently sedated with a small injection. This procedure is called a bronchoscopy, and can be done as a day case. The procedure is painless, and quite safe. The very rare complications that can happen will be explained to you. Less commonly, a biopsy can be taken from an affected area of the skin, or enlarged lymph gland, under the skin. Rarely, an operation under general anaesthetic is required to get the biopsy sample needed, from an organ inside the body.

HOW DO DOCTORS TREAT SARCOIDOSIS?

Sometimes, the symptoms are so mild, that no treatment is needed. Rest is generally advised. Aspirin or anti-inflammatory tablets may be used to treat aches and pains. Eyedrops may help the eye symptoms.
If further treatment is considered necessary, then this is usually with steroid tablets, which are very effective for reducing inflammation in sarcoidosis. The reasons for using steroids in sarcoidosis include: severe or worsening breathlessness, severe or worsening joint pains, bad eye disease, a high blood calcium level, severe skin disease, and the very rare brain or heart sarcoidosis. If your doctor is worried that the inflammation in the affected organ is progressing, and could lead to scarring in that organ, then he will normally recommend steroid treatment. Initially, quite a high dose of steroids will be given to you. The doctor will then reduce the dose as quickly as possible, and they are normally stopped quite quickly. Your doctor will be observing the inflammation in the affected organs, to decide how quickly to reduce the steroid dose. Some people will need to take them for a longer time than others, and a small number of people will require a small dose of steroid for life. This is unusual. Steroids do have some side effects that you should ask your doctor about. Rarely, other medications may be required. They are only needed if steroid treatment has failed, or if the steroid side effects are too troublesome. Your doctor will discuss these with you, in the rare event that they are needed. The doctor will assess your progress by asking you about your symptoms, examining you and by repeating various tests, including x-rays, breathing tests and blood tests.

WHAT IS THE OUTLOOK IN SARCOIDOSIS?

Sarcoidosis is usually a mild illness that goes away and never comes back. Treatment may be required for a short time, or not at all. It is unusual for it to come back after treatment, but, if it does, a second short course of treatment is usually successful. Rarely, sarcoidosis seems to "linger", and the patient needs to stay on treatment for a long time, even life-long. We should emphasise that this is unusual. The commonest example of this is where the inflammation in the lungs progresses when treatment is stopped or reduced. It is important in this case to continue treatment to control the inflammation and prevent permanent lung scarring, It is not unusual, even in mild sarcoidosis, not to feel "quite yourself " for a time after diagnosis, but the vast majority of people eventually "return to normal". Most people with sarcoidosis are expected to lead a normal, healthy life.