Lupus can affect many organs and symptoms can show up throughout the body, including the lungs.

The inflammation caused by lupus can affect the inside and outside of the lungs, the lungs themselves, and the diaphragm — a muscle just below your lungs that helps you breathe. Inflammation in these organs may lead to chest-related symptoms and breathing issues.

In this article, we’ll explain the different types of lung problems linked to lupus, their symptoms and treatment options, and when to seek emergency medical attention.

Types of Lupus Lung Complications

Inflammation in the lungs from lupus can cause lung complications. Lupus affects the lungs in about 50 percent of people living with systemic lupus erythematosus (SLE).

Some lupus-related lung conditions have similar symptoms but different causes. That’s why it’s important to tell your doctor about any lung or chest symptoms so they can figure out what’s causing the problem and treat it accordingly.

Here are some of the lung problems linked to lupus.

Pleuritis

Pleuritis is inflammation of the pleura, the thin lining that covers the lungs. Pleuritis is the most common lung complication in people with lupus.

Lupus-related pleuritis can cause severe chest pain, either in one spot or in several areas. It’s often a sharp, stabbing pain that gets worse when you take a deep breath. You might also feel it when laughing, sneezing, or coughing. This happens because the inflamed pleura puts extra pressure on your lungs.

Pain from pleuritis is called pleurisy, and it affects about 40 percent to 60 percent of people with lupus. One MyLupusTeam member described their experience of pleurisy as “painful inspiration with dizziness and a shortness-of-breath feeling due to not wanting to take a deep breath.”

Sometimes, inflammation in the pleura causes fluid to build up and leak out. This is called a pleural effusion.

Antimalarial medicines may help prevent pleuritis. Treatments for pleuritis and pleural effusions include nonsteroidal anti-inflammatory medicines (NSAIDs) and steroids.

Acute Lupus Pneumonitis

Acute lupus pneumonitis happens when inflammation affects the lungs themselves. It’s a serious but rare complication that affects between 1 percent and 10 percent of people with lupus.

Symptoms of acute lupus pneumonitis include:

• Shortness of breath
• Chest pain
• A dry cough that may bring up blood

Acute lupus pneumonitis needs to be treated right away. Treatment may include strong steroid medicines or immunosuppressive medicines. Even with treatment, there may still be scarring in the lungs.

Chronic Lupus Pneumonitis

Chronic lupus pneumonitis is similar to acute lupus pneumonitis, but the symptoms show up slowly over time instead of all at once.

Chronic lupus pneumonitis can cause pain in the chest and lungs, and while breathing. You should see a healthcare provider right away if you notice these symptoms.

Chronic lupus pneumonitis can happen even if you’ve never had acute lupus pneumonitis. Steroid medicines can help reduce inflammation from chronic lupus pneumonitis, but scarring in the lungs won’t go away. Spotting the symptoms early and getting treatment from your rheumatologist may help reduce scarring in the long run.

Chronic Diffuse Interstitial Lung Disease

Chronic interstitial lung disease (ILD) happens when long-term inflammation damages the lungs. Chronic inflammation can cause scarring in the interstitium, the tissue around the air sacs in the lungs. When the air sacs can’t fully expand, less oxygen reaches the body. This condition can lead to diffuse (widespread) interstitial lung disease, meaning the damage is spread throughout the lungs.

Symptoms of chronic diffuse interstitial lung disease include:

• Chest pain
• Trouble breathing during exercise
• A dry cough that doesn’t go away
• Fatigue

Treatment for people with lupus and chronic diffuse interstitial lung disease may include immunosuppressant medicines or medicines that decrease inflammation in the lungs.

“I have ILD. I do see a pulmonary doctor since my first time in the hospital because my breathing was bad to the point it affected my heart,” one MyLupusTeam member shared.

Pulmonary Embolism

A pulmonary embolism is a blood clot in the lungs. These clots often start in the legs and travel to the lungs through the bloodstream. Once in the lungs, the clot blocks blood flow and reduces oxygen levels.

People living with lupus are at a higher risk for pulmonary embolism, especially if they have additional antibodies, which increase the risk of blood clots.

A pulmonary embolism comes on suddenly and causes shortness of breath — the most common symptom of a pulmonary embolism. It may also cause chest pain.

A pulmonary embolism is a medical emergency and can be life-threatening. Treatment for a pulmonary embolism focuses on preventing future blood clots and may include:

• A filter placed in a large vein to stop clots from reaching the lungs
• Blood thinners (anticoagulants)
• Surgery

Pulmonary Hypertension

Pulmonary hypertension is a form of high blood pressure caused by thickening of the blood vessels that carry blood from the heart to the lungs. It can be caused by inflammation that thickens the blood vessels.

When the blood vessels are thickened, the heart has to work harder to pump blood through the lungs. Over time, this extra work can weaken the heart muscle and lead to heart failure.

Symptoms of pulmonary hypertension include:

• Chest pain or pressure
• Shortness of breath, either during activity or at rest
• Fainting
• Dizziness
• Fatigue
• A pounding or fast heartbeat
• Swelling in the stomach area, legs, or ankles
• A blue or gray tint to the skin (this may be harder to see on some skin tones)

Symptoms may worsen over time. At first, you might only feel short of breath during physical activity. One MyLupusTeam member said, “I’ve noticed I’ve been feeling winded (short of breath) while I’m doing my housework.” As the condition progresses, shortness of breath can happen even while resting.

Pulmonary hypertension is uncommon in people with lupus — only about 10 percent develop it. In rare cases, pulmonary hypertension may improve with immunosuppressants or corticosteroids, but this is not typical. Treatment for pulmonary hypertension usually targets the underlying condition — such as ILD — that puts stress on the heart.

Shrinking Lung Syndrome

Shrinking lung syndrome is a rare complication of lupus, affecting fewer than 2 percent of people with the condition. It leads to feelings of breathlessness and prevents the chest from expanding fully. This leads to difficulty breathing and sometimes chest pain.

One MyLupusTeam member described their experience with shrinking lung syndrome: “On a good day, I can take a deep breath and feel my lungs fill, but I still feel a tightness. On a bad day like today, it almost feels like I have a belt around my chest keeping me from breathing deeply.”

Treatment for shrinking lung syndrome may include immunosuppressive medicines or corticosteroids.

Infections

In addition to the above conditions, people living with lupus — especially those taking steroids or immunomodulators — are more likely to get respiratory infections. Even the flu can become a life-threatening infection if not treated early and appropriately.

If you think you have a respiratory infection, seek medical attention right away.

How To Manage Lupus Lung Symptoms

The first step in managing any lung symptoms is to tell your doctor. Treatment depends on what’s causing the problem. Your doctor may run tests and rule out other possible causes based on your symptoms.

Some lupus-related lung conditions can be serious and need to be treated right away. To stay safe, report any breathing problems or chest symptoms to your doctor as soon as they start. Catching lung conditions early on gives you the best chance at successful treatment. Your doctor may refer you to a pulmonologist (lung specialist) for more testing and specialized treatment.

When To Get Emergency Medical Care

Get medical attention right away if you have chest pain or shortness of breath. While these symptoms may be related to lupus, they can also be signs of a pulmonary embolism or a heart attack.

It can be scary and stressful to have chest pain, trouble breathing, or other unusual lung symptoms. The most important thing is to let a doctor know so they can work on keeping you safe and helping you breathe easier.

Talk With Others Who Understand

MyLupusTeam is the social network for people living with lupus and their loved ones. On MyLupusTeam, members come together to ask questions, give advice, and share their stories with others who understand life with lupus.

Have you had lung problems while living with lupus? What did they feel like and what helped manage them? Share your experience in the comments below or start a conversation by posting on your Activities page.