Do you sometimes just feel tired? Or do you have a little chest pain or difficulty breathing? You might think that these are normal things. However, these are very rare conditions that affect the heart. Cardiac Sarcoidosis is one such disease, which is a bit complicated, but if you are properly informed, it can be managed. Today, we will talk about this in a simple way that you can understand.
What is Cardiac Sarcoidosis?
Simply put, Sarcoidosis is a rare inflammatory disease that occurs in our body. In this, small inflammatory cells accumulate and form lumps (granulomas) in various organs of the body, especially in places like the lungs, lymph nodes, skin, and eyes. These lumps can interfere with the normal functioning of those organs.
Now, if this sarcoidosis condition affects the heart, that's what we call cardiac sarcoidosis . This is something that is very rare even among sarcoidosis patients. However, when the heart is affected in this way, scars can form in the heart muscle and in the pathways through which electrical signals travel in the heart. Think of it like a scar on the skin after an injury. These scars can cause abnormal heart rhythms and problems with the heartbeat.
How common is this condition?
Cardiac sarcoidosis is actually not a very common disease. Worldwide, doctors typically diagnose only 2% to 5% of people with sarcoidosis elsewhere in the body as having the condition in the heart. However, some studies suggest that in countries like the United States, 20% to 30% of people with sarcoidosis may actually have the condition in the heart, but may not be diagnosed.
This condition is more common in countries like Japan, where more than half of people with sarcoidosis also have the disease in their heart. However, cardiac sarcoidosis is rare compared to sarcoidosis that affects other organs.
Another important thing to note is that about a third of people with cardiac sarcoidosis do not show symptoms of sarcoidosis anywhere else in the body. This means that your heart may be the first organ affected by the disease.
What are the symptoms of this disease?
The symptoms of Cardiac Sarcoidosis can vary from person to person. Some people may not have any symptoms at all. However, there are some common symptoms:
- Chest pain: It may feel like a squeezing or squeezing sensation.
- Shortness of breath: You may feel short of breath, either when you are slightly tired or just at rest.
- Fainting or dizziness: You may suddenly lose consciousness and fall.
- Tiredness: Feeling tired all the time, no matter what you do.
- Coughing: There may be a persistent dry cough.
- Swelling in your legs: Areas like the ankle area may swell.
- Abnormal heartbeats / Heart palpitations: The heart rate may suddenly increase, decrease, or feel like it's skipping a beat.
If you have one or more of these symptoms, don't ignore them. It's best to seek medical advice.
Why does Cardiac Sarcoidosis occur?
In fact, doctors have not yet found a specific cause for this disease. However, researchers believe that some people's genetic makeup and environmental factors may play a role. That is, some people's bodies may react to something in the environment (for example, a bacteria, a virus, or dust) that causes this inflammatory condition. However, this is still in the research stage.
How is this disease diagnosed?
If you suspect you have cardiac sarcoidosis, your doctor will first do a physical exam. Then they will ask about your medical history . This means things like your previous illnesses and whether anyone in your family has had similar conditions.
In addition, various tests will be ordered to check for irregular heartbeats. The doctor will check for signs of sarcoidosis elsewhere in your body, and for evidence of the same symptoms in your heart.
What are the diagnostic tests?
There are several tests to accurately diagnose this disease:
- Electrocardiogram (EKG/ECG): This records the electrical activity of your heart as a pattern. It can detect any abnormalities in your heart rhythm.
- Echocardiogram: This is like a scan of the heart. It uses sound waves to look at the shape and size of the heart, how the heart's chambers and valves are working, and more. Sometimes a transthoracic echo is done.
- Holter monitor: This is a small device that you wear for 24 to 48 hours. It helps to continuously record your heart activity while you go about your daily activities.
- Positron Emission Tomography (PET scan): This is a special scan that is very useful for detecting inflammation and scarring in the heart.
- Heart MRI (Cardiac Magnetic Resonance Imaging): This uses magnetic fields and radio waves to produce detailed images of the heart. This can also help to clearly see damage and scarring to the heart muscle.
Sarcoidosis is usually diagnosed in other parts of the body by taking a biopsy (a small sample of tissue and examining it under a microscope). However, this is not as common in the heart, as it is difficult to get a sample from the exact area of the heart where the problem is.
These imaging tests also help doctors determine the stages of cardiac sarcoidosis. It can range from mild to severe. It can progress through early stages, progressive stages, and active stages, leading to myocardial impairment and fibrosis.
What are the treatments?
The good news is that there are treatments for cardiac sarcoidosis. Your doctor will choose the most appropriate treatment for your condition. Here are some of the most commonly used treatments:
- Corticosteroid drugs: These work by reducing inflammation in the body. Prednisolone is a commonly prescribed drug in this group.
- Other immunosuppressants: Sometimes, if corticosteroids alone are not enough, or if their side effects are too severe, other medications may be given to control the body's immune system from becoming overactive.
- Anti-arrhythmic drugs: If the heartbeat is irregular, there are special medications to control it.
- Pacemaker: If the heart beats too fast, this small device is implanted in the heart to maintain it at a regular rate.
- Implantable Cardioverter Defibrillator (ICD): This device is implanted when there is a risk of life-threatening dangerous arrhythmias. At such times, it delivers a small electrical shock to the heart to restore normal rhythm.
- Catheter ablation: This is also a treatment for irregular heartbeats. The areas in the heart that are causing irregular electrical signals are found and destroyed using a catheter.
Very rarely, if the disease becomes so severe that it leads to heart failure , a heart transplant may be necessary.
What are the most commonly used medications and treatments?
Doctors often start with a high dose of a corticosteroid called prednisone (brand names include Sterapred® or Rayos®). This is taken for several months. The dose is then gradually reduced. If the disease is diagnosed and treated early, these medications can greatly control symptoms.
Are there any side effects of the treatment?
Corticosteroid medications like Prednisone can cause some side effects when used for a long time. That's why your doctor will monitor you regularly. The most common side effects are:
- Osteoporosis: Weakening of the bones.
- Infections: The risk of developing diseases may increase as the body's immunity decreases.
- High blood pressure.
- Elevated blood sugar.
- Mood swings.
- Insomnia.
Although catheter ablation treatment is initially successful, some people, especially those with ventricular tachycardia (a rapid heartbeat that starts in the lower chambers of the heart), may experience a recurrence in up to 86% of cases.
The risk of cardiac sarcoidosis recurring after a heart transplant is less than 10%.
Is Cardiac Sarcoidosis a serious condition?
This will vary depending on your condition. The best results are achieved if the disease is diagnosed early and treatment is started early. If treatment is delayed, the condition can become more serious.
If you have conditions like pulmonary hypertension ( increased pressure in the arteries that carry blood to the lungs) or a ventricular aneurysm (a weakening of the wall of one of the lower chambers of the heart that bulges like a balloon), the prognosis may not be as good.
How long can you live with this disease?
If treatment is started early, many people live well.
Studies have found that between 83% and 93% of people living with cardiac sarcoidosis are still alive after 10 years.
The survival rate after a heart transplant is 80% or more at one and five years.
Remember, although these statistics indicate general conditions, your individual situation may vary. So talk to your doctor to get a clear understanding of your situation.
Can Cardiac Sarcoidosis be fatal?
Yes, cardiac sarcoidosis can be fatal for some people. The risk of death is high, especially if the left ventricle of your heart is not pumping blood properly.
Sudden cardiac death is often caused by ventricular arrhythmias (irregular heartbeats in the lower chambers of the heart). If you are at risk, your doctor may recommend that you have an ICD device implanted.
How should I take care of myself?
Because this condition can get worse in a short period of time, it is important to take the medication exactly as prescribed by your doctor. You may need to take a medication like Prednisone for up to a year. If you experience any side effects from the medication, tell your doctor. But do not stop taking the medication without medical advice.
When should I see the doctor?
You will need to have imaging tests again about a month or six months after you start taking steroids (e.g., prednisone). This helps your doctor determine how well the medication is working and what the dosage should be going forward.
Even after steroids are stopped or the dose is reduced, you should continue to have follow-up checkups with your doctor for at least three years. This is because cardiac sarcoidosis can recur. About 40% of people will have a recurrence of the disease this way.
When should I go to the Emergency Treatment Unit (ETU) ?
If you suddenly experience any of these symptoms , go to the nearest hospital emergency room immediately or call 1990:
- Chest pain with difficulty breathing
- Sustained palpitations
- Dizziness and/or fainting
These could be signs of a dangerous heart rhythm disorder.
What questions should I ask the doctor?
Don't forget to ask these questions when you see the doctor:
- Can I control this condition with medication alone?
- What is my outlook, especially given my current situation?
- How well is my left ventricle working?
- How long do I need to take the medicine?
- What lifestyle changes can I make?
Finally, things to remember (Take-Home Message)
Cardiac Sarcoidosis is a somewhat scary word, but it is very important to be aware of it.
The best results can be achieved if this disease is diagnosed early and treatment begins early.
So, if you have these symptoms, don't ignore them and seek medical advice. Take the medicine your doctor prescribes exactly, on time. Talk to your doctor about side effects. Go for medical checkups on time. If you do these things right, you can live well with this condition. You are not alone, and doctors are there to help you.
` Heart disease, sarcoidosis, heart inflammation, shortness of breath, chest pain, irregular heartbeat, corticosteroids
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