Chronic graft-versus-host disease (GVHD) affects your whole body — including your mouth and salivary glands. People with this disease often deal with dry mouth, sores, and an increased risk of cavities and mouth cancer. If left untreated, oral symptoms of chronic GVHD can affect your ability to talk, chew, and swallow. Fortunately, symptoms usually improve with treatment, which can enhance your quality of life.

This article will cover five mouth symptoms of chronic GVHD and what changes to look out for. We’ll also discuss how doctors and dentists manage mouth symptoms with prescription and over-the-counter treatments.

What Is Chronic GVHD? How Does It Affect the Mouth?

Chronic GVHD affects people who have had hematopoietic stem cell transplants, also called bone marrow transplants. These transplants replace the blood-forming cells in your bones with healthy cells after cancer treatment. Allogeneic transplants use cells from donors, rather than a person’s own cells. Sometimes, the newly transplanted cells recognize your cells as foreign and attack them. This is known as GVHD. Chronic GVHD symptoms develop at least 100 days after a stem cell transplant.

Studies show that mouth symptoms affect around 83 percent of people with chronic GVHD. Sometimes, chronic GVHD only affects the mouth. For some people, chronic GVHD can affect multiple organs, including the skin and eyes.

Chronic GVHD affects the mouth in three ways. The first is by creating patches of inflammation and open sores (ulcers) inside the mouth. This is known as lichenoid mucositis. The second is by affecting the salivary glands. These glands make saliva — the clear fluid that moistens the mouth. Inflammation from chronic GVHD attacks and destroys the salivary glands, leading to dry mouth. Lastly, chronic GVHD can cause the buildup of extra scar tissue in the mouth. Known as sclerosis, this extra tissue makes it harder to open your mouth.

Together, these mouth problems make it harder for people with chronic GVHD to talk, eat, and take care of their teeth. You’ll likely have some mouth discomfort that impacts your quality of life. Working together with your doctor and dentist is important to control your symptoms and prevent complications later on.

Symptoms of Chronic GVHD in the Mouth

If you’re living with chronic GVHD, you’ll want to keep close tabs on your oral health. Signs of this disease to look out for include dry mouth, new sores, and trouble opening your mouth. People with chronic GVHD are also at risk of cavities and oral cancer.

1. Dry Mouth

One of the most common symptoms of oral GVHD is dry mouth. Also known as xerostomia, this condition is caused by problems with your salivary glands. When your salivary glands don’t make enough saliva, your mouth quickly dries out.

Your mouth is lined with moist tissue known as mucosa. Saliva normally keeps the mucosa wet and healthy. Mouth dryness from chronic GVHD damages this lining and leads to symptoms like:

• A dry, sticky feeling in your mouth and throat
• Itchy or burning sensations in your mouth and throat
• An increased risk of mouth infections
• Bad breath
• Cracked, dry lips
• Difficulties with tasting, chewing, and swallowing food

2. Mouth Sores or Ulcers

Oral chronic GVHD can also cause mouth sores or ulcers. Some people may notice white, lacy patches along their inner cheeks. These patches may or may not be painful. Others have discoloration or painful, open sores on their mouth or lips.

Painless little bumps called mucoceles appear with chronic GVHD as well. They come and go throughout the day — usually appearing during mealtimes.

Mouth ulcers make it harder to eat and drink certain foods and beverages. You may have to limit acidic, spicy, or crunchy foods that irritate the lining of your mouth. Carbonated beverages, alcohol, and even mint-flavored toothpaste can make pain and irritation worse as well.

The mucosal lining in your mouth plays a key part in protecting you from bacteria. Sores and ulcers damage this lining and break down this protective barrier. Chronic GVHD is associated with a high risk of bacterial infections.

3. Trouble Opening Your Mouth

People with chronic GVHD can develop extra scar tissue or sclerosis in their mouth. Scar tissue is much stiffer than healthy tissue. This makes it harder to open your mouth wide — a condition known as trismus. Doctors and researchers aren’t quite sure why scar tissue forms with chronic GVHD, although they know it is affected by inflammation and issues with the immune system.

Studies show that trismus makes it harder to:

• Eat properly to get enough nutrients from food.
• Brush and floss your teeth to maintain oral hygiene.
• Get dental cleanings and procedures.

4. Cavities

Saliva contains special substances that fight bacteria and prevent cavities. This clear fluid helps wash food down your throat away from your gums and teeth. Saliva also has important minerals like phosphate and calcium needed for strong teeth.

People with chronic GVHD who deal with dry mouth are more likely to develop cavities. Cavities can cause pain and discomfort, making it harder to eat or drink. Be sure to talk to your dentist if you notice:

• Aching or throbbing around a tooth
• Sharp pains when eating hot or cold foods
• Pain when chewing or biting down
• Noticeable stains, pits, or holes in your teeth

5. Increased Risk of Oral Cancer

Research shows that people who have an allogeneic stem cell transplant are more likely to develop oral (mouth) cancer. People with chronic oral GVHD have a risk of a specific cancer called oral squamous cell carcinoma and may require regular monitoring from their healthcare team to watch for it.

Signs of oral cancer to look out for include:

• A new lump or growth in your mouth
• A sore along your lip or in your mouth that doesn’t get better over time
• Red or white patches in your mouth
• New ear or mouth pain
• Loose teeth
• Trouble swallowing due to pain or discomfort

Treating and Managing Mouth Symptoms of Chronic GVHD

Chronic GVHD treatment for oral symptoms usually involves controlling inflammation and keeping the mouth moist. Fortunately, there are plenty of prescription and over-the-counter options available for managing this disease.

Controlling Inflammation in the Mouth

Corticosteroids (steroids) help calm the immune system and manage your symptoms. Other immunosuppressants work in similar ways to treat mouth inflammation. Doctors can prescribe several medications to treat oral symptoms of chronic GVHD, including:

• Oral steroids (pills) like budesonide, clobetasol, and dexamethasone
• Topical steroid creams and gels made with clobetasol or fluocinonide
• Tacrolimus topical ointment or oral rinse (mouthwash)

Treatments for Dry Mouth and Discomfort

Other treatments focus on relieving dry mouth symptoms. Chronic GVHD attacks the salivary glands and stops them from making enough saliva. Some medications like cevimeline and pilocarpine activate the salivary glands. This helps them make more saliva to lubricate the mouth.

Over-the-counter saliva substitutes like Biotène or Mouth Kote add mouth moisture for more comfort. You can find these products at your local drug store or grocery store in the oral care section.

If you have pain while eating or drinking, there are treatments that can help. Look for topical oral gels with lidocaine to help numb sore areas in your mouth. Your doctor or dentist can also suggest pain medications to take before eating.

Dry mouth can be a side effect of some prescription medications. If you take any of these medications, you can talk to your doctor about adjusting your dose or managing dry mouth:

• Antidepressants for anxiety and depression
• Certain pain medications
• Antihistamines for allergies
• Sleeping pills

Taking Care of Your Oral Health

Chronic GVHD in the mouth raises your risk of cavities. Having a good brushing and flossing routine can help prevent them. Some people also find that certain flavors of toothpaste, like mint, irritate their mouth. Find a toothpaste that works well for you, or ask your healthcare team for recommendations.

It’s also important to have regular dentist appointments while living with chronic GVHD. Health experts recommend having oral exams twice a year that include a thorough cleaning. Ask your dentist about fluoride application to prevent cavities as well. They can also keep an eye out for suspicious lesions or growths in your mouth during your exam. This is important for catching oral cancer early.

Talk With Others Who Understand

On myGVHDteam, the site for people living with graft-versus-host disease and their loved ones, people come together to ask questions, give advice, and share their stories with others who understand life with GVHD.

Have you experienced any of these mouth symptoms with your GVHD? What has helped bring relief? Share your experience in the comments below.