7 Ways GVHD Can Affect the Tongue

Medically reviewed by Puttatida Chetwong, M.D.
Posted on February 20, 2025

Symptoms of the mouth and tongue are often among the first signs of chronic graft-versus-host disease (GVHD), appearing in 45 percent to 83 percent of people who develop this condition. These symptoms can cause pain, difficulty speaking, and trouble eating or drinking, which can affect your nutrition and quality of life. In some cases, they may also increase the risk of infections or long-term damage to oral (mouth) tissues.

Recognizing how GVHD affects the tongue can help with early detection and treatment, potentially improving long-term outcomes.

How Does GVHD Affect the Tongue?

GVHD is a common and potentially serious complication of an allogeneic stem cell transplant (a bone marrow transplant using cells from a donor). Stem cell transplants can be lifesaving for people with blood disorders and cancers, such as leukemia and lymphoma. During the transplant, damaged or diseased blood cells are replaced with health stem cells (immature blood cells) from a healthy donor. However, GVHD can occur when the donor’s immune cells (the graft) recognize the recipient’s healthy cells (the host) as foreign and attack them.

Acute GVHD usually appears within 100 days, but it can also develop later. Chronic GVHD can happen at any time, but only if chronic symptoms are present. Acute and chronic GVHD can affect any part of the body, including your mouth and tongue. Oral symptoms aren’t common in people with acute GVHD. However, most people with chronic GVHD will have some symptoms that affect their mouth and tongue.

Everyone may experience symptoms of GVHD differently. Below, we’ll discuss seven symptoms of GVHD that can affect your tongue, so you know what to look for.

1. Inflammation and Redness

People with GVHD may develop oral mucositis (inflammation and redness of the mouth and tongue). It can occur during the conditioning regimen before a stem cell transplant or afterward as a complication of GVHD. (CC BY 4.0/Miranda, M., et al.)


Oral mucositis (inflammation and redness of the mouth and tongue) can make eating, drinking, and speaking painful. This condition is most common during the pretransplant conditioning regimen or within the first three to four weeks after transplantation.

Before a stem cell transplant, you’ll go through a conditioning regimen designed to destroy diseased blood cells and weaken your immune system so your body can accept the donor’s cells. This process typically involves high-dose chemotherapy or total-body irradiation, both of which can damage the delicate tissues inside your mouth. Almost everyone undergoing intensive chemotherapy or radiation develops some degree of oral mucositis as a side effect.

Timing matters when it comes to oral mucositis. Within the first 100 days post-transplant, it’s usually a side effect of chemotherapy or radiation rather than GVHD. After 100 days, persistent or worsening oral mucositis is often a symptom of chronic GVHD and may require ongoing treatment.

2. White Patches on the Tongue

White patches or raised plaques often develop on the top or sides of the tongue in people with chronic GVHD. In some cases, instead of a simple patch, you might notice thin white lines forming a pattern resembling a web on the cheeks or tongue. These patches are called lichenoid lesions because they resemble a chronic inflammatory skin condition called lichen planus.

Lichenoid lesions are usually not painful, so they can go unnoticed unless you know to look for them. However, in some cases, they may cause mild discomfort, a rough texture, or sensitivity to spicy or acidic foods.

3. Sores on the Tongue

Some people with chronic GVHD develop painful ulcers (raw, open sores) on their tongue. These sores can make eating, drinking, and even talking uncomfortable. They often cause increased sensitivity to foods and drinks that are hot, cold, sour, or spicy, making it difficult to enjoy meals.

GVHD-related tongue ulcers can look different from person to person. Some may appear as raw, scraped areas on the tongue. Others may resemble canker sores, with a smooth yellow or white center and red, inflamed edges. Unlike minor mouth sores, these ulcers usually don’t heal on their own and may require medications or special mouth rinses to help with healing and pain relief.

4. Dry Mouth

Xerostomia (dry mouth) can happen in chronic GVHD if the immune system attacks the salivary glands, reducing saliva (spit) production. Saliva is essential for keeping the mouth moist, washing away bacteria, and aiding digestion. Without enough saliva, the tongue and mouth can become dry, rough, and uncomfortable.

If you have dry mouth, you may experience:

  • A rough or cracked tongue, which can make talking and eating more difficult
  • Deep grooves or fissures on the tongue due to prolonged dryness
  • Mucoceles (small fluid-filled blisters) on the cheeks or tongue, especially while eating.

Other complications of dry mouth include:

  • Changes in taste — Foods may seem bland or have a metallic taste.
  • Tooth decay and dental caries (cavities) — This is due to reduced saliva protecting teeth.
  • Increased risk of infection, such as oral thrush
  • Bad breath, caused by bacteria buildup
  • Sore throat or hoarse voice, resulting from dryness and irritation

5. Changes in Taste

Changes in your sense of taste are common after a stem cell transplant, especially in people with moderate to severe GVHD. Your tongue is covered in taste buds, which play a key role in detecting flavors. When GVHD or its treatments affect the mouth, it can alter how foods taste or feel.

GVHD can affect your sense of taste by causing dry mouth and mouth sores. Additionally, some medications used to treat or prevent GVHD can also affect taste, such as:

  • Chemotherapy drugs
  • Radiation therapy
  • Cyclosporine (Neoral, Sandimmune, or Gengraf)
  • Sirolimus (Rapamune)
  • Antibiotics to prevent infection

All types of taste — including sweet, sour, salty, and umami (savory) — can be affected. Some people lose their ability to taste certain flavors, while others find foods taste metallic, bitter, or too strong.

Taste disturbances can make eating less enjoyable and may lead to poor nutrition, impacting energy levels and overall well-being. Most adults recover their sense of taste within about 100 days after transplant, but in some cases, full recovery can take up to six months.

6. Restricted Tongue Movement

Chronic GVHD-related inflammation can lead to restricted tongue movement over time. Prolonged inflammation damages the tissues of the tongue and mouth, and as the body repairs itself, it replaces the damaged tissue with scar tissue in a process called fibrosis. This scar tissue contains excess collagen, making it stiff and less flexible, which can make it uncomfortable or difficult to move your tongue.

Fibrosis isn’t limited to the tongue — it can also affect the face, neck, and other parts of the mouth. In some cases, severe fibrosis can make it hard to fully open the mouth, affecting eating, speaking, and oral hygiene.

7. Increased Risk of Oral Cancer

People with chronic GVHD have a higher risk of developing oral squamous cell carcinoma (a type of mouth cancer). Lichenoid lesions — the white, patchy areas often seen with GVHD — can sometimes look like cancer and, in some cases, may turn into cancer over time. Long-term inflammation and tissue damage from GVHD may also contribute to this increased risk.

If you have chronic GVHD, oral cancer screenings at least once a year are strongly recommended. Your healthcare provider may perform a biopsy (taking a small tissue sample from your tongue or mouth) to check for cancer cells, especially if there are any concerning changes in your oral tissues.

Managing Mouth and Tongue Symptoms With GVHD

Mouth and tongue symptoms of GVHD can significantly impact your quality of life, making it harder to eat, drink, or speak comfortably. Fortunately, working with your healthcare team can help you find treatments to ease discomfort and prevent complications.

If your symptoms are mild and limited to the mouth and tongue, your healthcare team may recommend local treatments. For example, a mouth rinse with lidocaine (a numbing medication) can relieve pain from mouth ulcers. Anti-inflammatory medication such as dexamethasone can reduce inflammation.

For more severe symptoms, or if GVHD affects other organs, systemic (whole-body) treatments may be necessary. Corticosteroids (steroids) such as prednisone are often the first-line treatment for both acute GVHD and chronic GVHD.

One of the most important steps in managing GVHD-related oral symptoms is having regular exams with a dentist or oral medicine specialist. Routine checkups can help identify problems early before they worsen.

Your healthcare team can also help you develop an oral hygiene routine to reduce complications and lower the risk of infections. Tips for good oral hygiene include:

  • Brushing your teeth after eating using a soft-bristled toothbrush to avoid irritation
  • Using a fluoride toothpaste to help protect against cavities
  • Flossing once a day (unless your gums are too sensitive)
  • Rinsing your mouth with salt water every four to six hours to help reduce inflammation and bacteria buildup

Talk to Your Healthcare Team

If you’re struggling with pain, dryness, or other oral symptoms, don’t hesitate to ask your healthcare team about additional treatment options. They can help tailor a plan that works best for your specific needs.

Connect With Others Who Understand

On myGVHDteam, the site for people 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 the condition.

Have you experienced any symptoms in your mouth or tongue related to chronic GVHD? How did you manage your symptoms? Share your experience in the comments below.

Puttatida Chetwong, M.D. earned her medical degree from Chulalongkorn University in Bangkok, Thailand. Learn more about her here.
Amanda Jacot, Pharm.D earned a Bachelor of Science in biology from the University of Texas at Austin in 2009 and a Doctor of Pharmacy from the University of Texas College of Pharmacy in 2014. Learn more about her here.
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