Sarcoidosis can be difficult to diagnose because the disease often produces few signs and symptoms in its early stages. When symptoms do occur, they may mimic those of other disorders.
Your doctor will likely start with a physical exam and discuss your symptoms. He or she will also listen carefully to your heart and lungs, check your lymph nodes for swelling, and examine any skin lesions.
Diagnostic tests can help exclude other disorders and determine what body systems may be affected by sarcoidosis. Your doctor may recommend tests such as:
- Blood and urine tests to assess your overall health and how well your kidneys and liver are functioning
- Chest X-ray to check your lungs and heart
- Computerized tomography (CT) scan of the chest to check your lungs
- Lung (pulmonary) function tests to measure lung volume and how much oxygen your lungs deliver to your blood
- Electrocardiogram (ECG or EKG) to detect heart problems and monitor the heart's status
- Eye exam to check for vision problems that may be caused by sarcoidosis
- Positron emission tomography (PET) scan or magnetic resonance imaging (MRI) if sarcoidosis seems to be affecting your heart or central nervous system
Other tests may be added, if needed.
Your doctor may order a small sample of tissue (biopsy) be taken from a part of your body believed to be affected by sarcoidosis to look for the granulomas commonly seen with the condition. For example, biopsies can be taken from your skin if you have skin lesions and from the lungs and lymph nodes if needed.
There's no cure for sarcoidosis, but in many cases, it goes away on its own. You may not even need treatment if you have no symptoms or only mild symptoms of the condition. The severity and extent of your condition will determine whether and what type of treatment is needed.
If your symptoms are severe or organ function is threatened, you will likely be treated with medications. These may include:
- Corticosteroids. These powerful anti-inflammatory drugs are usually the first line treatment for sarcoidosis. In some cases, corticosteroids can be applied directly to an affected area — via a cream to a skin lesion or drops to the eyes.
- Medications that suppress the immune system. Medications such as methotrexate (Trexall) and azathioprine (Azasan, Imuran) reduce inflammation by suppressing the immune system.
- Hydroxychloroquine. Hydroxychloroquine (Plaquenil) may be helpful for skin lesions and elevated blood-calcium levels.
- Tumor necrosis factor-alpha (TNF-alpha) inhibitors. These medications are commonly used to treat the inflammation associated with rheumatoid arthritis. They can also be helpful in treating sarcoidosis that hasn't responded to other treatments.
Other medications may be used to treat specific symptoms or complications.
Depending on your symptoms or complications, other treatments may be recommended. For example, you may have physical therapy to reduce fatigue and improve muscle strength, pulmonary rehabilitation to decrease respiratory symptoms, or an implanted cardiac pacemaker or defibrillator for heart arrhythmias.
How often you see your doctor can vary based on your symptoms and treatment. Seeing your doctor regularly is important ― even if you don't need treatment.
Your doctor will monitor your symptoms, determine the effectiveness of treatments and check for complications. Monitoring may include regular tests based on your condition. For example, you may have regular chest X-rays, lab and urine tests, EKGs, and exams of the lungs, eyes, skin and any other organ involved. Follow-up care may be lifelong.
Organ transplant may be considered if sarcoidosis has severely damaged your lungs, heart or liver.
Lifestyle and home remedies
In addition to treatment, these self-care tips can help:
- Take your medication as prescribed. Even if you start to feel better, don't stop taking your medication without talking with your doctor. Keep all follow-up appointments and ongoing monitoring. Let your doctor know if you have new symptoms.
- Make healthy lifestyle choices. These can include eating a healthy diet, maintaining a healthy weight, managing stress and getting adequate sleep.
- Participate in regular physical activity. Engaging in regular physical exercise can improve mood, strengthen muscles and help reduce fatigue that can interfere with your daily activities.
Coping and support
Although sarcoidosis may go away by itself, some people's lives are forever altered by the disease. If you're having trouble coping, consider talking with a counselor. Participating in a sarcoidosis support group may also be helpful.
Preparing for your appointment
Because sarcoidosis often involves the lungs, you may be referred to a lung specialist (pulmonologist) to manage your care. Taking a family member or friend along can help you remember something that you missed or forgot.
What you can do
Here's some information to help you get ready for your appointment and know what to expect from your doctor.
Before your appointment, make a list of:
- Your symptoms, including when they started and how they may have changed or worsened over time
- All medications, vitamins, herbs or supplements you're taking, and their dosages
- Key medical information, including other diagnosed conditions
- Questions to ask your doctor
Questions to ask your doctor may include:
- What's the most likely cause of symptoms?
- What kinds of tests do I need? Do these tests require any special preparation?
- How might this condition affect me?
- What treatments are available, and which do you recommend?
- Are there medications that might help?
- How long will I need to take medication?
- What are some of the side effects of the medication you're recommending?
- I have other health conditions. How can we best manage these conditions together?
- What can I do to help myself?
- Are there any brochures or other printed materials that I can have?
- What websites do you recommend for more information?
Don't hesitate to ask other questions during your appointment.
What to expect from your doctor
Be ready to answer questions your doctor may ask:
- What types of symptoms are you experiencing? When did they start?
- Do you know if anyone in your family has ever had sarcoidosis?
- What types of medical conditions have you had in the past or do you have now?
- What medications or supplements do you take?
- Have you ever been exposed to environmental toxins, such as in a manufacturing or farming job?
Your doctor will ask additional questions based on your responses, symptoms and needs. Preparing and anticipating questions will help you make the most of your time with the doctor.