“I seem to get swelling in my lower lip with lupus flares,” wrote one member of MyLupusTeam. “We’re talking major, huge swelling.” Have you, too, experienced lip swelling since your lupus diagnosis? Does it seem to happen more during a lupus flare?

Although joint pain and rashes are more common symptoms, lupus can affect any part of the body. In this article, we’ll discuss why someone with this autoimmune disease might experience angioedema — swelling of deep layers of skin that can affect areas all over the body, including the lips. We’ll also present tips for managing this uncomfortable symptom.

Ways Lupus Can Cause Lip Swelling

Lupus causes widespread inflammation that can affect internal organs or any other tissues, including the lips. Lupus inflammation is worst during flares.

Many members of MyLupusTeam have noticed that their lips swell during lupus flares, which they describe in comments like these:

• “Every single time I flare, this happens to my upper and lower lip.”
• “I have systemic lupus and have been having more frequent bouts of lip swelling. My lower lip has swollen three nights in a row.”
• “I definitely got swelling all over my face (eyes, nose, cheeks, neck, lips, ears). My lips were enormous.”

Sun and Skin Sensitivity

For people living with cutaneous lupus erythematosus (skin lupus), lip swelling may be related mostly to sun exposure. Even if you use sunscreen on your face, you may need to apply lip balm with an SPF of at least 30.

Some people with systemic lupus erythematosus (SLE) — the most common form of lupus, which can affect various tissues and organs — experience sun sensitivity, along with face and lip swelling and flare-ups. Health experts recommend that people living with any type of lupus avoid the sun or use a good sunscreen that blocks both ultraviolet A and ultraviolet B sunlight.

Increased skin sensitivity in lupus may also show up as reactions to certain cosmetics or skin care products. If you kiss someone, you may also come into contact with their skin care products.

Ulcers

People with SLE commonly develop mouth and nose sores, though these symptoms also can occur in a type of skin lupus. They resemble canker sores and can be so painful that they make it hurt to eat and drink. These sores usually occur inside the mouth, but they can cause swelling that extends to the lips.

Lupus is known to cause other mouth problems, including dry mouth, angular cheilitis (cracking and bleeding on the sides of the mouth), and gum disease. Inflammation and irritation that results from these conditions may make your lips swell. If you’re experiencing any of these symptoms, speak to your health care team. Also, be sure to get regular dental checkups and cleanings.

Other Causes of Lip Swelling

Lip swelling can be caused by many health conditions or situations that may or may not be related to lupus. If you experience frequent or long-lasting lip swelling, the symptom could be caused by factors such as medications, allergies, or other health conditions.

Reactions to Medication

Nonsteroidal anti-inflammatory drugs (NSAIDs) such as aspirin, ibuprofen, and naproxen are commonly used to treat lupus symptoms — and are also associated with allergies that may cause lip swelling.

Other medications linked with allergies that may involve lip swelling include:

• Antibiotics like penicillin
• Sulfa drugs like trimethoprim and sulfasalazine
• Contrast dye used in imaging scans

Allergies are immune system reactions to medication, and they can be dangerous and even life-threatening. If you believe you may be having an allergic reaction to a drug, go to an emergency room immediately. Some of the most common symptoms of an allergic reaction include:

• Swelling
• Rash
• Hives
• Wheezing
• Breathing difficulties

Swelling of the lips and inside the mouth can also be a symptom of an allergic reaction.

Some drugs are known to cause lip swelling as a side effect, rather than a sign of an allergic reaction. These medications include:

• ACE inhibitors, such as benazepril (Lotensin), captopril, and enalapril (Vasotec)
• Calcium channel blockers, such as amlodipine (Katerzia, Norliqva, Norvasc) and diltiazem (Cardizem, Diltzac, Taztia, and others)
• Some fibrinolytic medications, also known as blood thinners

Food Allergies

One common cause of lip swelling unrelated to lupus is a food allergy, which is an immune response similar to a drug allergy. Severe reactions can cause angioedema affecting parts of the body including the lips, face, and eyes. Anaphylaxis is a life-threatening allergic reaction that requires emergency care.

It’s possible to be allergic to any food, but the most common food allergies involve:

• Milk
• Eggs
• Soy
• Peanuts
• Tree nuts
• Shellfish
• Wheat

Underactive Thyroid Gland

If your lip swelling is chronic (long-lasting or recurring), it could be a sign of hypothyroidism, when the thyroid gland doesn’t make enough thyroid hormone. People with lupus have a higher risk of hypothyroidism.

Other symptoms of hypothyroidism include:

• Weight gain
• Trouble tolerating cold
• Depression
• Joint pain
• Muscle pain
• Fatigue
• Dry skin
• Hair loss

If you’re concerned that you may have signs of hypothyroidism, talk to your doctor. They can check your thyroid function with blood tests and imaging scans.

Ways To Manage Lip Swelling

You can try several techniques to help manage lip swelling:

• Use an ice pack. If you’re experiencing pain with your swelling, the cold may soothe it.
• Determine if you have allergies. If your lips swell often, ask your doctor whether allergy testing may be warranted. If you’re allergic to something, you can avoid that trigger.
• Take an antihistamine (anti-allergy drug). One member who believed their swelling was due to an allergic reaction said, “Benadryl really helps — I keep it with my meds.”
• Apply lip balm. Wear a lip balm with an SPF of at least 30 if you go outside on a sunny day. Moisturizing lip balm can also help heal dry and cracked lips.
• Stop smoking. Using cigarettes has been shown to worsen skin lupus and prevent some medications from working correctly.
• Avoid touching. Try not to place your hands or fingers on your swollen lips and areas of lupus rash.
• Check your medications. Before taking a new drug, ask your doctor if it increases light sensitivity. If it does, ask for a different medication, or take extra precautions against sun exposure.

Lip swelling can be a sign of a serious underlying problem, like a lupus flare or an allergic reaction. Your doctor is in the best position to help you determine the root cause of your swollen lips and provide medical advice on how to effectively manage this painful symptom.

Talk With Others Who Understand

MyLupusTeam is the social network for people with lupus and their loved ones. On MyLupusTeam, more than 226,000 members come together to ask questions, give advice, and share their stories with others who understand life with lupus.

Have you ever experienced lip swelling as a symptom of lupus? What did you do to manage this symptom? Share your experience in the comments below, or start a conversation by posting on your Activities page.