How Did I Get Sarcoidosis, and What Do I Do Now?

When you started experiencing a persistent cough, shortness of breath, wheezing, and periodic chest pain, adult-onset asthma may have been the first possibility that popped into your mind. What you probably didn’t expect, however, was to find out your lung symptoms were caused by a rare and somewhat mysterious inflammatory disease called sarcoidosis. 

After a sarcoidosis diagnosis, you want to learn everything you can about your lung-affecting illness: What it is, why it occurs, how it’s treated, and what you can expect along the way. Our team at Fivestar Pulmonary Associates is here to give you the answers and the hope you seek. 

A closer look at sarcoidosis

Sarcoidosis is a condition that causes your immune system to overreact, triggering the formation of lumps or nodules called granulomas. These lumps can appear anywhere in your body but they’re most common in your lungs and lymph nodes. 

Understanding granulomas 

Granulomas are inflamed lumps consisting of white blood cell clusters. Surrounded by fibrous tissue that makes them feel dense and hard, granulomas are walled off from the rest of your body as your immune system tries to protect you from a perceived harm. 

Common lung symptoms 

Given that your lungs are the most common place for sarcoidosis granulomas to appear, most people experience pulmonary symptoms. These can be mild and sporadic or intense and ongoing, depending on the number and size of granulomas: 

• Chest discomfort
• Ongoing cough
• Shortness of breath
• Wheezing 

You may also experience a general feeling of being unwell, fever, fatigue, swollen lymph nodes, joint pain, and muscle aches. When sarcoidosis affects other areas, like your skin or eyes, you may develop a range of associated symptoms (i.e., skin bumps or rashes, red or swollen eyes) as a result. 

A rare inflammatory disease 

Sarcoidosis is rare, affecting about 150,000-200,000 people in the United States at any given time, with roughly 27,000 newly diagnosed cases each year. Despite its inflammatory nature and immune system involvement, sarcoidosis isn’t an autoimmune disorder. 

When sarcoidosis comes on quickly and affects several body areas at once (i.e., joints, pulmonary lymph nodes, and skin on your shins), it’s called Löfgren syndrome. This acute form of sarcoidosis typically resolves within 6-24 months. 

Why do I have sarcoidosis?

This may be the question you most want answered, but unfortunately, the exact cause of sarcoidosis is unknown. Experts believe that a combination of genetics and environmental factors is what triggers disease onset, and for some unidentified reason, certain people are more likely than others to experience this type of immune system overreaction. 

Researchers don’t know which genes and triggers combine to cause sarcoidosis, but they’ve noticed that having a first-degree relative (parent or sibling) with the condition is a significant risk factor. 

Sarcoidosis also affects Black people more often than white people, women slightly more often than men, and younger adults (aged 25-40) more often than middle-aged or older adults. For example, Black women are three times more likely than Caucasian women to develop the condition. 

Management and treatment 

The mysterious aspect of sarcoidosis is how it may — or may not — progress. In some people, the condition simply goes away on its own over time, even without treatment. In others, it advances and causes organ damage. In the case of pulmonary sarcoidosis, this can mean it advances into severe lung disease in the form of fibrosis (scarring). 

Fibrosis is diagnosed as stage-four pulmonary sarcoidosis, and it’s the only stage that isn’t reversible. In stages one through three (granulomas in pulmonary lymph nodes, lymph nodes and lungs, or lungs only), the condition can still reverse itself. In fact, it’s possible to move in either direction between stages, especially if granulomas disappear. 

Sarcoidosis management aims to prevent stage-four scarring. If your symptoms are especially bothersome, your treatment plan may include taking medications to modify or suppress your immune system, such as:

• Corticosteroid drugs (typically via oral inhaler)
• Immunosuppressant medications like methotrexate 
• Non-steroidal anti-inflammatory drugs (NSAIDs)

Because NSAIDs are only recommended for short-term use, and long-term corticosteroid and immunosuppressant use increases your risk of infection and comes with a host of problematic side effects (i.e., weight gain, insomnia, high blood pressure), it’s important to weigh the pros and cons of active treatment against watchful waiting. 

Our team works with you to determine the best course of care in your case. 

The good news? Many people feel better a few weeks after starting treatment. And for most, sarcoidosis is a temporary condition that eventually goes away: Two in three people experience full remission within 24-36 months (2-3 years). 

Do you have questions about sarcoidosis management? We have answers. Schedule an appointment at Fivestar Pulmonary Associates in Allen, McKinney, or Plano, Texas, today.