“Things are great today — as long as I don’t try to eat, drink, swallow, or breathe! My tongue is in bad shape today 🤣,” shared a MyAmyloidosisTeam member, describing a less common — and very uncomfortable — symptom of amyloidosis.

Amyloidosis is a rare condition caused by a buildup of abnormal proteins called amyloids, which form clumps (deposits) in organs and tissues. Sometimes, amyloidosis affects just one part of the body. Other times, it appears in multiple areas — this is called systemic amyloidosis. Amyloid deposits don’t often form inside the mouth, but when they do, they usually affect the tongue. Amyloid deposition (buildup) in the tongue can make it hard to talk, swallow, or even breathe.

Members of MyAmyloidosisTeam have discussed their experiences with tongue symptoms. “The first thing I noticed was my tongue being swollen. When I was diagnosed with AL amyloidosis, they said that it's definitely part of it,” said a member who has amyloid light-chain (AL) amyloidosis. “It’s very painful.”

Changes in your tongue can have a big impact on your quality of life. If you notice anything unusual, such as swelling, pain, or trouble speaking, tell your healthcare provider right away. Here are some symptoms to keep an eye on.

What Is Macroglossia?

One of the more common ways amyloidosis can affect the tongue is through macroglossia, which means enlargement of the tongue. A tongue is considered enlarged when it extends past the teeth while at rest. Macroglossia usually develops slowly and painlessly as amyloid proteins gradually build up in the tongue tissue. The edges of the tongue may also look wavy or rippled. Tongue involvement can lead to serious complications, such as trouble breathing or blocked airways, so it’s important to get checked by a healthcare provider early.

Many underlying conditions can cause tongue swelling, so your healthcare provider may take a biopsy (a small tissue sample to examine under a microscope) to check for amyloid deposits and confirm the diagnosis.

Macroglossia’s Effect on Daily Life

“I have an enlarged tongue too. It’s been like that for two years since I was diagnosed with AL amyloidosis. It’s only on the left side of my tongue,” one MyAmyloidosisTeam member wrote. “Sometimes it’s very hard to talk.”

“The enlarged tongue was my husband’s main symptom, along with swollen salivary glands on his neck. It took over a year and three specialists to figure out what he had,” another member reported. “He eats very slowly but manages. He doesn’t talk much, and I think it’s a little hard for him to.”

Tongue symptoms such as macroglossia aren’t always noticed right away. Many people don’t realize anything is wrong until they develop a lisp, pain, or difficulty eating. Over time, the tongue may become stiffer and larger, making it hard to breathe, chew, or speak. Macroglossia can also lead to:

• Jaw pain, due to extra strain from chewing
• Pain while eating, which may lead to weight loss or malnutrition
• Dryness, cracking, or injury to the tongue
• Drooling, speech problems, and dental issues
• Trouble with breathing tubes during surgery or emergencies (intubation)

Treatment for Macroglossia

Treatment first focuses on the underlying amyloidosis, which might involve chemotherapy or other medications, depending on your type of amyloidosis. Your healthcare provider may recommend surgery to reduce your tongue size. One option is plasma radiofrequency ablation, a minimally invasive procedure that causes fewer side effects compared with more aggressive surgeries.

If you have macroglossia, it’s important to talk with your doctor about treatment options as early as possible. In severe cases, untreated macroglossia can block the airway and become life-threatening.

3 Other Ways Amyloidosis Can Affect the Tongue

Macroglossia is the most common way amyloidosis affects the tongue, but it’s not the only symptom that might affect your mouth. Here are three other tongue-related changes that can happen with amyloidosis.

1. Scalloping

When the enlarged tongue presses against the bottom teeth, wavy or scalloped marks can form along its edges. This symptom appears in about 15 percent of people with AL amyloidosis, but it can also occur in localized amyloidosis (a form that affects just one area of the body).

2. Yellow or White Bumps

Amyloidosis can cause yellow or white nodules (bumps) to form on the tongue. Doctors have reported individual cases of these bumps appearing on the top surface of a person’s tongue. Bumps can also develop along the tongue’s lateral border, or sides, of the tongue and may look waxy or slightly raised.

Members of MyAmyloidosisTeam have described how these symptoms feel. “Mine is swollen all the way back into my throat. If I do not sleep in the proper position, I feel like I am trying to swallow a soft rubber ball. My tongue is easily bitten, becomes very sore from eating anything rough, and has sores along the edge and top,” one member said.

3. Bleeding and Infections

Amyloidosis can make the tongue more prone to bleeding and infections. It’s easy to accidentally bite an enlarged tongue. Tongues covered in lesions may also tear more easily, allowing bacteria from the mouth to get in and cause an infection.

Symptoms of a tongue infection or disease may include:

• Changes in color
• Unusual textures or fuzzy patches on the tongue
• A smooth tongue surface, which normally has small, natural bumps called papillae

Antibiotics or antifungal medications may help clear a mouth infection. It’s important to get treatment early, while the infection is still only in your mouth. If left untreated, it could spread to other parts of your body.

Living With Tongue Amyloidosis

Tongue problems can happen for many reasons. The issue is sometimes temporary, but if your tongue symptoms last more than a few weeks, it’s important to talk with your healthcare provider — especially if you’ve been diagnosed with amyloidosis.

Other possible causes of tongue symptoms include:

• Allergic reactions
• Minor burns from hot food or drinks
• Nutritional deficiencies
• Tumors or growths

Tongue amyloidosis can cause unpleasant symptoms and serious complications, such as trouble breathing or getting enough nutrition. Your healthcare team can help you manage these risks and improve your quality of life. Depending on your symptoms, your team may include several types of specialists:

• A registered dietitian can help you choose nutritious foods that are easier to chew or swallow. You may need to adjust food textures to make eating safer.
• A speech and language pathologist can support you with swallowing or communication challenges.
• A pulmonologist (lung doctor) or respiratory therapist can evaluate your breathing and suggest ways to keep your airway open.
• A dentist can help manage oral infections, dry mouth, or pain. They may recommend special mouth rinses or artificial saliva products.

Working with the right team can make a big difference in managing tongue amyloidosis and preventing complications.

Talk With Others Who Understand

On MyAmyloidosisTeam, the social network for people with amyloidosis and their loved ones, members come together to ask questions, give advice, and share their stories with others who understand life with this rare disease.

Have you ever experienced an enlarged tongue or other tongue symptoms? Share in the comments below, or start a conversation by posting on your Activities page.