How to Know if you Have Sarcoidosis
Sarcoidosis also called sarcoid is a condition where cells in your body clump together to make small lumps called granulomas.
Signs and symptoms of sarcoidosis vary depending on which organs are affected. Sarcoidosis sometimes develops gradually and produces symptoms that last for years. Other times, symptoms appear suddenly and then disappear just as quickly. Many people with sarcoidosis have no symptoms, so the disease may be discovered only when you have a chest X-ray for another reason.
Symptoms can be similar to those of other diseases, such as arthritis or cancer. Your doctor will run a variety of tests to make a diagnosis.
See your doctor if you have signs and symptoms of sarcoidosis.
For many people, sarcoidosis begins with these symptoms:
- Swollen lymph nodes
- Weight loss
- Lung symptoms
Many patients with sarcoidosis experience lung problems, which may include:
- Persistent dry cough
- Shortness of breath
- Chest pain
Some people who have sarcoidosis develop skin problems, which may include:
- A rash of red or reddish-purple bumps, usually located on the shins or ankles, which may be warm and tender to the touch
- Disfiguring sores (lesions) on the nose, cheeks and ears
- Areas of skin that are darker or lighter in color
- Growths under the skin (nodules), particularly around scars or tattoos
Sarcoidosis can affect the eyes without causing any symptoms, so it’s important to have your eyes checked. When eye symptoms do occur, they may include:
- Blurred vision
- Eye pain
- Severe redness
- Sensitivity to light
- Heart symptoms
Signs and symptoms related to cardiac sarcoidosis may include:
- Chest pain
- Shortness of breath (dyspnea)
- Fainting (syncope)
- Irregular heartbeats (arrhythmias)
- Rapid or fluttering heart beat (palpitations)
- Swelling caused by excess fluid (edema)
It can be difficult to diagnose sarcoidosis.
Your doctor will first perform a physical examination to:
- check for skin bumps or a rash
- look for swollen lymph nodes
- listen to your heart and lungs
- check for an enlarged liver or spleen
Based on the findings, your doctor may order additional diagnostic tests:
- A chest X-ray can be used to check for granulomas and swollen lymph nodes.
- A chest CT scan is an imaging test that takes cross-sectional pictures of your chest.
- A lung function test can help determine whether your lung capacity has become affected.
- A biopsy involves taking a sample of tissue that can be checked for granulomas.
Your doctor may also order blood tests to check your kidney and liver function.
Treatment for sarcoidosis
Sarcoidosis will often get better without medication. Only a small number of people with sarcoidosis need treatment.
This means it’s normal for your doctor to keep an eye on your symptoms for a few months before talking about treatment options. It’s usual to have regular chest X-rays, breathing tests and blood tests to monitor your condition.
Most people with acute sarcoidosis, which is short term, won’t need specific treatment. If your sarcoidosis is causing you pain, such as muscle or joint pain, a painkiller such as ibuprofen or paracetamol can help.
If your symptoms continue and tests show your condition is getting worse, you may need treatment. The aim of treatment is to improve your symptoms and to prevent scarring and damage to the affected parts of your body.
Steroids are an effective treatment. Sometimes they can be used directly on the part of your body that’s affected. For example, you can use eye drops for eye symptoms. More usually, you’ll take them as a course of tablets.
If you take high doses of steroids for a long time, you can experience side effects. These can include increased appetite and weight gain, indigestion, heartburn and difficulty sleeping. They can also cause a weakening of the bones called osteoporosis.
For this reason, you’ll usually take a high dose of tablets for a short time, followed by a lower dose over a much longer period. If you stop taking steroids too soon, your condition might become active again and cause more scarring. So you’ll often need to continue the treatment for up to two years.
Usually you’ll only need one course of steroids, but sometimes you might need to take a second course. Only a small number of people with sarcoidosis need long-term treatment with steroids. If you take steroids long term, most centres will recommend a bone density scan. This may be repeated if you take steroids for over two years.
For a very small number of people, steroids are not enough to control their symptoms. These people may take other medications called immunosuppressants. These help control your body’s immune system.
Looking after yourself
If you currently smoke, the most important thing you can do to look after your health is to quit.
Getting regular exercise and enough sleep is very important.
It’s also important to eat well and maintain a healthy weight. Avoid sugar and processed foods where possible. Drink plenty of fluid to keep hydrated. Foods and fluids contain essential nutrients to help control your symptoms and keep you feeling as strong as possible.
If you have sarcoidosis, you might have a tendency to develop high levels of calcium in your urine or blood. Don’t take any calcium or vitamin D supplements unless they’re specifically recommended for you by your doctor. You should be able to get all the calcium and vitamin D you need from a balanced diet.
Before you make any major changes to your diet, you should always talk to your doctor or another health care professional.
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