Sarcoidosis means that one or more organs in your body are inflamed. Inflammation is due to a disruption of the immune system. Most often you get the disease in the lungs. The symptoms vary and it may take time for the disease to pass. Most become healthy without treatment, but in some, sarcoidosis can cause life-long problems.

The symptoms of sarcoidosis vary greatly

Sarcoidosis can cause various symptoms. This is because, among other things, the disease can occur in one or more organs at the same time or at different times.

Sarcoidosis comes in two forms:

  • Acute sarcoidosis. Usually called Löfgren’s syndrome and within one or a few days you become ill with fever, fatigue, muscle and joint pain. It is also common with tender, blue-red spots on the lower legs or the ankles to swell. You usually recover within a few months to a year.
  • Non-acute sarcoidosis. Also called sarcoidosis with the insidious disease. This form is more common and the symptoms develop more slowly. Common symptoms are fatigue, cough, and shortness of breath when exerted. You can also lose weight involuntarily. The disease can last for several years and sometimes causes permanent problems in the affected organ or organs. 

What other symptoms you get depend on, among other things, which organ or organs you have received sarcoidosis.

The disease is most common in the lungs

It is most common to get sarcoidosis in the lungs or lymph nodes, but one or more other organs may also be affected.

In the case of internal organ sarcoidosis, you do not always get symptoms. But doctors can detect the disease in blood tests or in, for example, x-rays.

Here is a description of which symptoms are most common depending on where in the body you have received sarcoidosis. Symptoms can occur in both forms of sarcoidosis, but some disorders are more common in one form. 

lungs

You may get a cough or pressure over your chest. The cough is usually dry, which means that you do not cough up mucus. When you exert yourself, you may be breathless. If you have had the disease for a while, you may also feel the breathlessness at rest. Shortness of breath is unusual in the acute form.

The lymph nodes

It is common for lymph nodes located inside the chest to be enlarged. You may not know this yourself, but it is usually the doctor who discovers it at a chest x-ray. Sometimes lymph nodes that are more superficial under the skin are enlarged. Then you can feel them.

The skin

Tuberculosis is part of the acute form of sarcoidosis. These are tender, blue-red, round and slightly elevated skin changes that are usually seen on the lower legs. Usually, they only stay for a few weeks and leave no scars.

Some people with non-acute sarcoidosis get other types of skin changes. They can look many different ways, but it is common with tan, slightly raised spots that do not itch. When they heal after months to years, they become thinner and fade. Sometimes small raised point-shaped bumps are seen.

Old scars after, for example, surgeries can become brownish and swollen. It may be the first sign of sarcoidosis. Some areas of tattoos can also become thicker.

The eyes

If the eyes become inflamed by sarcoidosis, they usually become intensely red, sensitive to light and hurt. Inflammation is attenuated by cortisone therapy but may recur at regular intervals.

joints

A common first symptom of acute sarcoidosis is that it hurts, swells and feels stiff in the ankles and sometimes even in the knee joints. During a prolonged course of illness, you may experience pain and stiffness in several joints, but most often it goes over.

heart

It is unusual to get sarcoidosis in the heart. If you get it, your heart may slow down or irregularly, and you may feel dizzy and feel faint. You may also have heart failure, although it is very uncommon. Then the heart will not be able to pump around the blood as it should, which can be felt by being breathless and getting swollen lower legs.

The brain and nervous system

Symptoms from the brain and nervous system are not always noticeable and can, therefore, be difficult to detect. The disease may be located centrally in the meninges or in more superficial nerves, for example in the face.

Examples of more noticeable symptoms are

  • paralyzed facial muscles, which usually goes over
  • impaired memory
  • concentration difficulties
  • convulsions
  • confusion.

kidneys

Sarcoidosis can cause kidney stone attacks. This is because the disease affects the body’s vitamin D metabolism. Then too much lime accumulates in the blood and the kidney function deteriorates.

When should I seek care?

Contact a health care provider if you suspect you have sarcoidosis. 

Treatment of sarcoidosis

There is no medicine to cure sarcoidosis. The purpose of the treatment given is to suppress inflammation when it is most active. This often reduces your hassles and you feel better.

By suppressing inflammation, you also reduce the risk of having uncomplicated problems, such as impaired lung capacity or impaired function in other organs.

Treatment for acute sarcoidosis  

Usually, you do not need any or only short-term treatment if you have the acute form of sarcoidosis. If you have any problems, you may be given medicines that relieve the symptoms, such as pain tablets with ibuprofen.

If you have severe joint inflammation, you may get cortisone, either with syringes in the affected joints or in tablet form.

Acute eye inflammation is treated with cortisone drops in the eyes and, if necessary, also with cortisone tablets. You can also get other types of eye drops.

Treatment for non-acute sarcoidosis

Also, you may not need treatment if you have the non-acute form of sarcoidosis. If you do not have clear symptoms or feel particularly ill, your doctor can often suggest that you wait a few months to see how the disease develops.

If you get worse during that time, you may be treated. Otherwise, you will continue to see your doctor for checkups every few months.

You may need to take cortisone for a long time

If you have any form of sarcoidosis and any organ starts to function poorly, you will often get to try cortisone in tablet form. It is most common if you have sarcoidosis in the lungs with symptoms such as cough, shortness of breath and fatigue.

It is common to have cortisone for at least one year. During that time, the dose is gradually reduced. If the disease has affected the nervous system, fairly high doses of cortisone are often required for several months.

Sometimes other drugs are needed

Sometimes the effect of cortisone is not enough and sometimes the side effects become too evident. Then you may need a combination of a lower dose of cortisone and an immunosuppressive drug. Examples of such are methotrexate and azathioprine. They require special, regular checks on liver function and blood status, and treatment sometimes needs to last for several years.

Some drugs are given via drip directly into the blood if another treatment has not worked. One such drug is, for example, infliximab. The treatment takes one or a few hours in a hospital and is repeated every few weeks.

Side effects of cortisone

Cortisone can cause side effects. How powerful they become depends, among other things, on the dose you receive and how long you need the drug. Some common side effects are

  • weight gain
  • Mood swings
  • bruises
  • thin, fragile skin
  • osteoporosis.

Cortisone affects metabolism and reduces the body’s sensitivity to insulin. It increases the risk of you getting diabetes. If you gain weight, the risk increases further. So make sure you eat varied and healthy and move as best you can. In this way, you also reduce the risk of cortisone treatment causing osteoporosis 

Other treatments

Fatigue is often a troublesome symptom against which there is no specific treatment. Sometimes you may receive cortisone tablets, but the benefits of treatment must then be weighed against the risk of the side effects that cortisone can provide.

Dry cough can sometimes be alleviated with respiratory widening medication that you breathe in.

In heart sarcoidosis you may need special medication and perhaps a pacemaker, to help the heart maintain a consistent rhythm. 

You get to go on checks

You do not need to see a doctor so often, but you continue to go on checks until there is no longer any evidence that the disease is active. Signs that the disease is still active may be that you continue to be tired and constantly have some fever. The doctor then continues to monitor how the disease develops.

In the case of acute sarcoidosis, two to three checks are often enough for a year. In the case of non-acute sarcoidosis, the development of the disease is more difficult to assess. Therefore, longer follow-up time is needed, often for several years. But you only need to see the doctor maybe once or twice a year.

There is no single test to show that you are healthy. Instead, the doctor makes an overall assessment of your symptoms and responses from blood tests, measurements of lung function and pulmonary x-ray.

If you have sarcoidosis in your heart, eyes or brain and nervous system, your doctor will monitor the progression of the disease with a few other methods.

Most get healthy

Most people who get sarcoidosis become healthy and free of symptoms within a few to a few years. Most people do not get sick again.

The acute form of sarcoidosis usually goes on for a few months to a year. If you have had acute sarcoidosis and have been symptom-free for more than a year, the risk is that you will become ill again.

If you do not have acute sarcoidosis, it may take longer before you get well. It is common to feel tired for a long time. But after a few years, most people become healthy.

Sarcoidosis can cause problems that do not go over

Some suffer permanent discomfort in the body that has been inflamed. Symptoms vary depending on which organ (s) you have had sarcoidosis. If your lungs have been severely affected, you may, for example, have constant difficulty breathing.

Investigations

Depending on which parts of the body are affected, you may need to undergo a number of different examinations.

Acute sarcoidosis

At the health center, you will be examined by a doctor and given blood tests. If you have typical symptoms such as fever, aching blue-red spots on the lower legs, or swollen ankles and perhaps coughing, you will usually receive a referral for a pulmonary x-ray.

If lung changes are detected it may be sufficient for you to be diagnosed with acute sarcoidosis. But you can also get more studies to see which organs are affected and how much they are affected.

  • If your eyes are red, photosensitive and hurt, you should contact an ophthalmologist to examine the eyes.
  • The lung function is usually examined by breathing in appliances that measure the capacity of the lungs, called spirometry.
  • It may also be the case with bronchoscopy. This means that the trachea is examined by passing a narrow, flexible fiberoptic instrument down through the nose.

Non-acute sarcoidosis

You usually need to undergo multiple and repeated examinations to find out if you have non-acute sarcoidosis.

Here are examples of studies that may be relevant:

  • You will be able to x-ray your lungs if you have a dry cough and shortness of breath. If the X-ray shows signs of sarcoidosis, you will usually have a bronchoscopy.
  • You may need a  chest x-ray chest, so-called computed tomography.
  • In case of eye problems, an ophthalmologist looks into your eyes with a microscope to find out if they have become inflamed.
  • If the nervous system can be affected, you will be examined with a magnetic camera, called MRI. You can also have a back fluid test. This means that a doctor, using a needle stick in the lumbar spine, takes samples from the fluid surrounding the spinal cord.
  • You are given blood samples that show, among other things, the function of the liver and kidneys and calcium levels. Levels of calcium in the urine are also measured.
  • In both forms of sarcoidosis, your resting ECG is usually examined to see if your heart rhythm is normal. If it is not or if you have a feeling of fainting, heart function is usually investigated with ECG monitoring for 24 hours. The heart can also be examined with ultrasound. You may also need to do a work test or be examined with a magnetic camera. In isolated cases, tissue samples are taken from the heart muscle. 
  • It is common for the doctor to take a tissue sample to safely diagnose. Most often the sample is taken from the place that is most easily accessible, for example, the skin. The sample can then be analyzed by a microscope.

Important to understand

In order to be able to participate in your care and make decisions, it is important that you understand the information you receive from the healthcare staff. Ask questions if you don’t understand.

You have the right to get the information in your own language, for example with the help of an interpreter. You also have the right to receive interpreting assistance in case of hearing loss.

What is sarcoidosis?

In sarcoidosis, the body’s immune system does not function properly. Among other things, the immune system should remove and destroy foreign substances that have entered the body. That mechanism does not work properly in sarcoidosis, and some organs may become inflamed. 

When you have sarcoidosis, the cells that are supposed to fight the inflammation gather in small lumps called granulomas. Over time, the granuloma can be completely dissolved or converted into scars. If the granuloma is transformed into scars, you can have permanent discomfort from the organ.

It is unclear what causes sarcoidosis. There may be some substance in the environment around us, maybe something we breathe in, possibly a microorganism.

In rare cases, several people in the same family may get sarcoidosis. This indicates that the disease is to some extent also hereditary.

Sarcoidosis is not considered an infectious disease.

The genes can affect

The organs in which you get sarcoidosis and how the disease develops depend, among other things, on your genetic conditions.

With the help of a blood test, doctors can see what kind of gene you have and say a little more confidently how the disease will develop.  

Who gets sarcoidosis?

Every year, around 1,200 people are diagnosed in some parts of Europe, but another few hundred are likely to get the disease without being detected.

It is extremely unusual for someone to get sarcoidosis before the age of 20.

Pregnancy and sarcoidosis

It is best if you avoid trying to get pregnant as long as the sarcoidosis is active and especially if you are being treated. Pregnancy creates extra stress for your body, which is already affected by inflammation and possible treatment.

But it doesn’t usually cause any major problems if you still get pregnant. There is no evidence that sarcoidosis would increase the risk of complications. Consult your doctor if you have sarcoidosis and want to become or are pregnant.

How is life affected by sarcoidosis?

Sarcoidosis can affect everyday life, especially if you feel very tired. For example, you may not be as physically active as before. You may also need treatment for several years and you may experience side effects from the medicines you take.

But usually, you get better the longer you go, and there are things you can do to make everyday life easier. Many people feel in better shape since cortisone is inserted and it is also common for cortisone itself to improve mood. Rest and exercise in a proper mix can also make you feel better.  

Sarcoidosis is only visible if you get the disease in the skin and it is uncommon for the rash to sit on the face. This means that you can sometimes be perceived as healthier than you feel, which can be frustrating. It can be good to tell your surroundings of the disease. Then you can be met by better understanding of the days when you may be feeling bad and unable to cope with what was expected of you.

Muhammad Nadeem

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