Medically reviewed and verified by Kate Burke, MD, MHA
In previous articles, PatientsLikeMe has covered how the disease amyloidosis can affect different parts of the body. The digestive system, the brain, the heart. When proteins misfold, they can spread throughout the body and cause damage to any number of organs and body parts. That includes your mouth! People with amyloidosis often report issues with their mouth and tongue. This can be painful and frustrating, as simple activities like eating or talking become difficult. Here, PLM will give an overview of oral amyloidosis and its effects.
What is Oral Amyloidosis?
Amyloidosis is categorized in a few ways. Systemic or local, primary or secondary, and acquired or hereditary. When it is systemic, the disease affects more than one organ. Secondary means another disease or infection has caused it. Oral amyloidosis is secondary to systemic amyloidosis. This means that most often after amyloidosis has spread to multiple organs it affects the mouth.
Amyloid proteins will build up in the tissues of the mouth. The tongue is the most commonly affected area in oral amyloidosis. It can also show up in the gingiva, lip, and palate. The condition often leads to an enlarged tongue, known as macroglossia. This enlargement can cause the tongue to appear scalloped at the edges, and it may also develop lesions that can be painful. These make eating and speaking difficult.
Symptoms
When amyloidosis spreads to the mouth, it can affect the tongue, throat, and palate in a number of ways. There are some common symptoms to watch for.
- Macroglossia (enlarged tongue)
- Scalloped edges on the tongue
- Nodular or ulcerative lesions
- Difficulty speaking and swallowing
- Altered taste
- Dry mouth
- Abnormal voice quality or pitch
- Hoarseness
- Difficulty breathing because of an airway obstruction
How is Oral Amyloidosis Diagnosed?
To diagnose oral amyloidosis, doctors typically take a biopsy of the affected tissue. This means they take a small sample from where they believe a disease to be and run tests on it. The biopsy is then examined under a microscope using a special stain called Congo red. This helps to highlight the amyloid deposits.
Treating Oral Amyloidosis
While there is no cure for amyloidosis, there are treatments that can help manage symptoms and slow disease progression. Your treatment will depend on whether the amyloidosis is systemic or localized. Because oral amyloidosis is most commonly a secondary condition, the main goal will likely be to manage the disease across the entire body.
Medications
Chemotherapy has been the treatment of choice for years. These drugs destroy the abnormal plasma cells behind the production of amyloids. Certain targeted therapies, designed to attack specific genes or proteins, may also be used depending on the spread of the disease.
Surgery
If the amyloidosis is localized to the tongue, the deposits can be removed surgically. Organ and stem cell transplants may also be courses of action depending on the spread of the disease. These procedures replace damaged organs or cells with healthy ones.
Supportive Care
Depending on how severely the mouth is affected, you may need to take steps to regain normal function. Speech therapy can help if you have issues with speaking. Certain dietary changes might be needed, such as eating more soft or pureed foods to make swallowing easier. Regular checkups with your doctor or dentist can help monitor any additional oral health issues that can arise.
Oral amyloidosis, like any form of the disease, is challenging to manage. With proper treatment and care, you can maintain a good quality of life! Catching this disease early and intervening is an important part of preventing further complications. Work closely with your doctor on your care and be sure to check out PatientsLikeMe for more resources and support.
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