Do you have these symptoms? Let's talk about sarcoidosis!

Do you sometimes feel like there's something strange in your body, but you can't quite figure out what it is? There are some diseases that come up in your body every now and then, but if you know them well, you can control them. Sarcoidosis is one such condition. Today, we'll talk about this simply, in a way that you can understand.

What is Sarcoidosis?

Simply put, sarcoidosis is a condition in which your body's immune system becomes overactive and forms small lumps in various parts of the body. These lumps are called granulomas . The symptoms depend on where these granulomas form and their size. Sometimes there may be no symptoms at all, or they can range from mild discomfort to severe symptoms. What's more dangerous is that sometimes these granulomas can cause tissue scarring, called fibrosis , which can permanently damage the lungs, for example.

These granulomas can actually form anywhere in the body. But they are most commonly found in the lungs and lymph nodes . In addition, they can also form in the skin, eyes, and muscles, causing symptoms.

What is a granuloma?

Can you imagine a little battle going on inside your body? A granuloma is just that. Your immune system thinks something bad has entered your body. So, white blood cells gather around that bad thing, surround it, and isolate it from the rest of your body. It's like trapping an enemy. This trapped white blood cell mass forms a layer of fibrous tissue around it. That's why a granuloma feels like a small lump when you touch it.

Who is most affected by this situation?

Sarcoidosis can affect anyone, but some people are more likely to develop it. For example, the condition is more common in black people than in white people. It also affects women slightly more than men. It is most often diagnosed in people between the ages of 25 and 40 .

This is not a hereditary disease. That is, it is not something that is passed down directly from mother to father. However, if a close relative in your family (parents, children, siblings) has this condition, you are at some risk of developing it too.

Sarcoidosis is considered a rare disease . For example, in the United States, there are fewer than two hundred thousand patients at any given time.

What are the symptoms of Sarcoidosis?

As I mentioned before, the symptoms depend on where in the body the granulomas form. Most people experience symptoms in the lungs. However, these symptoms can appear anywhere on the body, in the skin, in the eyes, in the joints, in fact. Sometimes there may be only general symptoms, such as a feeling of weakness and fatigue, or there may be no symptoms at all.

Commonly seen symptoms:

• Fever
• Constantly tired, fatigued
• Joint pain
• Muscle pain or weakness
• Sweating at night
• Swollen lymph nodes
• Weight loss for no reason
• Formation of kidney stones

Lung-related symptoms:

• Cough (often a dry cough)
• Difficulty breathing, shortness of breath (dyspnea)
• Chest pain
• Wheezing (whistling) when breathing

Eye-related symptoms:

• Blurred vision or complete loss of vision (due to conditions such as optic neuritis)
• Eye pain
• Redness or swelling of the eyes (conditions such as `uveitis` or `conjunctivitis`)
• Sensitivity to light (inability to look at a light)

Skin-related symptoms:

• Lumps under the skin around scars or tattoos
• Light or dark spots on the skin
• Red-purple bumps or lesions on the nose or cheeks (`lupus pernio`)
• Red, tender lumps in the groin area (erythema nodosum)

Heart-related symptoms:

• Chest pain
• Feeling your heart beating abnormally (palpitations)
• Heart rhythm disorder (arrhythmia)
• Heart failure
• Difficulty breathing

Nervous system related symptoms:

• Frequent thirst or excessive urination (Diabetes insipidus)
• Weakness or paralysis of facial muscles (Bell's palsy)
• Headache
• Seizures

What are the stages of pulmonary sarcoidosis?

Sarcoidosis, a condition affecting the lungs, is sometimes described in stages. This is called the Siltzbach classification system .

But it's important to remember: These stages don't necessarily indicate the severity of the disease. You don't necessarily have to go through all of them. They are classified based on how your lungs look on a chest X-ray. That is, where the granulomas are located.

A person with sarcoidosis may go back and forth between these stages, or the granulomas may disappear completely. The only irreversible stage is stage four. This is when permanent damage to the lungs occurs, called pulmonary fibrosis.

• Stage 0: There are no signs of sarcoidosis in the lungs on X-ray. The lungs and lymph nodes appear normal.
• Stage 1: Granulomas are only in the lymph nodes.
• Stage 2: Granulomas are present in both the lymph nodes and the lungs.
• Stage 3: Granulomas are only in the lungs.
• Stage 4: X-rays show pulmonary fibrosis, which means permanent scarring of the lungs.

What causes sarcoidosis?

The exact cause of this condition is not yet known. Research suggests that it is caused by a combination of genetic factors and environmental factors. This means that some people's immune systems may overreact to certain antigens , such as bacteria and viruses. Although the immune system is involved, sarcoidosis is not considered an autoimmune disorder .

Since we don't know exactly which genes and triggers combine to cause this, it's difficult to predict who will develop it.

What is Löfgren syndrome?

Löfgren syndrome is a sudden onset of sarcoidosis. It is characterized by a combination of symptoms that affect several parts of the body:

• Arthritis in several joints.
• Fever.
• Red, tender lumps in the groin area (erythema nodosum).
• Swelling of the lymph nodes in the chest.

The good news is that Löfgren syndrome usually resolves within 6 months to 2 years.

How is sarcoidosis diagnosed?

Sarcoidosis is often diagnosed by a doctor who examines you (`physical exam`), performs imaging tests such as a chest X-ray, and takes a small sample of a suspicious granuloma for examination (biopsy) . Because the disease can have similar symptoms to other diseases, your doctor may order additional tests to rule out other conditions.

What are the diagnostic tests?

Imaging tests and biopsies are the most common tests used to diagnose sarcoidosis, but your doctor may order other tests depending on your symptoms.

• Imaging tests: These use special machines to take pictures of things inside your body. Your doctor may order chest X-rays, CT scans, or MRIs.
• Biopsies: The type of biopsy performed varies depending on where the granuloma is suspected. Biopsies from the skin, conjunctiva, and some lymph nodes are not that big of a deal and can be done without making a large incision.

Sometimes, to get a piece of tissue from the lungs, you have to use a more complicated method. This is done by inserting small tubes, cameras, and biopsy tools through the nose or throat, or by making a small incision. Examples:

• ``Endobronchial ultrasound-guided transbronchial fine needle aspiration (EBUS-TBNA)''
• ``Bronchoscopic transbronchial biopsy''
• `Mediastinoscopy` (These are somewhat complex medical procedures, and are only performed by the doctor if necessary)

Other tests:

• Pulmonary function tests: These check how well your lungs are working. These are simple tests.
• Blood and urine tests (`Lab tests`): Check how other organs, such as the liver and kidneys, are working.
• Electrocardiogram (EKG or ECG): A routine test that looks at the electrical activity of your heart.
• Nuclear imaging tests: These include PET scans and gallium scans. These tests use a small amount of radioactive material to look for inflammation in the body.
• Purified protein derivative (PPD) test: This is a simple skin test. It checks for exposure to or infection with tuberculosis (TB). This is important because sometimes TB can look like sarcoidosis.
• Slit-lamp examination: The doctor looks inside your eye to see if sarcoidosis is causing eye problems.

How is sarcoidosis treated?

Sarcoidosis is often treated to control symptoms and prevent organ damage. Remember, granulomas are caused by inflammation caused by immune cells. So, the treatment involves medications that alter or control the immune system. Treatment varies depending on where the granuloma is in the body.

There is no specific cure for sarcoidosis. But it often gets better on its own . If the symptoms are not too bothersome or life-threatening, sometimes sarcoidosis is not treated right away. Instead, you and your doctor will work together to monitor your symptoms.

What are the medications for sarcoidosis?

These medications work by altering or controlling the immune system and reducing inflammation. Some of the most commonly used medications are:

• Corticosteroids: Medications such as prednisone and cortisone. These reduce inflammation in the body. They are available as pills that you swallow, as an inhaler that sprays into the mouth, or as a topical cream (for the skin or eyes).
• Immunosuppressants: These help stop the immune system from damaging organs and causing inflammation. Methotrexate is a type of drug commonly used for sarcoidosis.
• Anti-tumor necrosis factor-alpha antibodies (anti-TNF-alpha antibodies): Medications such as infliximab. These work by blocking a specific chemical in the immune system to reduce inflammation. These medications are given by a doctor as an infusion (like a saline solution) into a vein.
• Nonsteroidal Anti-Inflammatory Drugs (NSAIDs): These provide temporary relief from symptoms caused by inflammation, but they are not usually prescribed long-term.

What are the complications/side effects of the treatment?

Corticosteroids can increase your risk of getting sick. They can also cause several side effects. Examples include:

• Being too big.
• Insomnia.
• Acne.
• Developing diabetes in people who are predisposed to diabetes.
• High blood pressure.
• Glaucoma.
• Cataracts.
• Thinning of bones (Osteoporosis).
• Depression and difficulty controlling emotions.
• Skin that bruises easily.

For these reasons, doctors only recommend medication for sarcoidosis if the benefits outweigh the risks.

How quickly will I feel better after treatment?

It can take several weeks to several months for symptoms to improve after starting treatment for sarcoidosis. Your doctor will monitor you and may do follow-up tests to see if the treatment is working.

What foods are not good to eat when you have sarcoidosis?

Some research suggests that certain dietary patterns can reduce inflammation in the body. Eating more plant-based foods like vegetables and fruits , limiting meat and cheese, and reducing carbohydrates like sugar and bread may help with your sarcoidosis symptoms. But be sure to ask your doctor before starting a new diet.

Can sarcoidosis be prevented?

Because the exact cause is unknown, there is no way to prevent sarcoidosis or reduce the risk of developing it. However, taking medications as prescribed by your doctor can help reduce the damage to organs caused by granulomas.

What is the outlook for sarcoidosis?

Sarcoidosis varies in severity. For most people, it is a temporary condition that gets better on its own or with treatment. For some, it can become a long-term illness (a `chronic illness`) and cause permanent damage.

Consider this: About two-thirds of people with sarcoidosis will fully recover (i.e., the disease will go into `remission`) within two to three years. Those with the previously mentioned Löfgren syndrome have a much better chance of recovery, often within 6 months to 2 years.

People who still have sarcoidosis after three years are more likely to develop long-term disease. However, even in those with long-term sarcoidosis, only 10% to 20% of people develop permanent organ damage. The most common complication is lung scarring.

Most sarcoidosis patients live a normal life span. Only a very small percentage (1% - 5%) die. So, there is nothing to worry about, this is a manageable condition.

How do I take care of myself while living with sarcoidosis?

The best thing you can do is follow your doctor's instructions. Keep checking your symptoms regularly for changes. Take your medication exactly as prescribed. It's also important to stay calm.

When should I see a doctor?

If you develop new symptoms, if your symptoms become bothersome, or if you are taking medication and are having trouble with side effects, see or talk to your doctor right away.

What questions should I ask my doctor?

It may be helpful to ask these questions when you visit your doctor:

• Is it more beneficial for me to seek treatment or monitor my symptoms?
• How long does it take for symptoms to improve?
• How do I know if my treatment is working?
• Do I need to make any changes to my lifestyle?
• When should I come see you again?

In summary (Take-Home Message)

Sarcoidosis is a rare condition that can cause a variety of symptoms. Don't worry, most of the time it will go away on its own or with treatment. Although it can be long-term, it can be managed well with medication and medical advice. Remember, in some cases it may be better to just monitor your symptoms without treatment. You and your doctor can decide what is best for you. So, stay strong and follow your doctor's advice.

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