If you’re living with graft-versus-host disease (GVHD), you may feel like your body is turning against you in unexpected ways. This condition can develop after an allogeneic stem cell transplant (a bone marrow transplant using donor cells) and may cause a wide range of symptoms, some noticeable and others less obvious. GVHD can affect multiple organs and, in severe cases, may be life-threatening.

Doctors used to classify GVHD as acute if it appeared within 100 days of a transplant and chronic if it developed later on. However, updated National Institutes of Health (NIH) guidelines focus on the type and severity of symptoms rather than when they occur. Read more about types of GVHD.

This article discusses the different ways GVHD can affect the body. Understanding these effects can empower you to discuss symptoms in detail with your healthcare team and find the best treatment options for you.

1. Skin, Nails, and Connective Tissue

About 70 percent of people with chronic GVHD have symptoms that affect the skin, nails, and connective tissues (which help support and hold the body’s structures together). These symptoms can affect comfort, mobility, and quality of life. Inflammation from chronic GVHD can cause noticeable skin color changes, making areas appear red, purple, or brown or look lighter or darker than surrounding skin. These changes can last for months or even years.

Rashes are also common in both chronic and acute GVHD. Discolored patches, bumps, or blisters may form on your hands, feet, or face. A rash can spread and may feel itchy, burning, or tingly. In some cases, sores or ulcers may form. Another possible symptom is cutaneous sclerosis, a buildup of scar tissue that causes the skin to thicken, tighten, and harden. This can limit movement, especially around joints like the knees, elbows, or fingers.

Treatment for skin GVHD often starts with topical corticosteroids (steroids), which are applied to the skin. If symptoms don’t improve, doctors may recommend topical tacrolimus, an ointment that’s used to treat eczema, a chronic skin condition.

2. Mouth and Salivary Glands

Oral symptoms, another hallmark of chronic GVHD, can make eating, drinking, and speaking difficult. Some of the most common issues include:

• Dry mouth and chapped lips due to reduced saliva production
• Mouth sores and ulcers
• Difficulty opening the mouth due to stiff scar tissue
• Taste changes, such as increased sensitivity to spicy foods or carbonated drinks

Saliva plays a key role in reducing bacteria and preventing cavities. When your salivary glands produce less saliva and your mouth dries out, your risk of tooth decay rises. Regular dental checkups, saliva substitutes, and prescription medications can help manage these symptoms and protect your oral health.

3. Eyes

Chronic GVHD can significantly affect your eyes, leading to discomfort and vision issues. Reduced tear production may lead to dry eyes, irritation, and a gritty sensation. Inflammation can cause redness, swelling, and soreness, while photophobia (sensitivity to light) can make daily activities more challenging. In some cases, damage to the eye’s outer layer can blur vision.

Treatment often includes artificial tears, medicated eye drops, or lubricating ointments. Prescription medications such as cevimeline or pilocarpine may be needed to reduce inflammation and prevent further damage. Regular eye checkups are essential for monitoring changes and ensuring symptoms are properly managed.

4. Gastrointestinal Tract

The gastrointestinal (GI) tract, or digestive system, is a common target of chronic GVHD. Symptoms can range from uncomfortable to debilitating and may include:

• Nausea and vomiting
• Diarrhea
• Abdominal pain or cramping
• Weight loss

Severe GI symptoms can lead to further health concerns. Diarrhea may cause dehydration, while nausea and vomiting can make it hard to get enough nutrients. Dietary adjustments, medications, and nutritional support can help manage GI symptoms and maintain overall health.

5. Liver

Chronic GVHD can interfere with the liver’s crucial functions — filtering toxins, producing bile (a digestive fluid), and processing nutrients. Inflammation from GVHD may cause elevated liver enzymes, a sign of stress or damage to liver tissue. This damage can disrupt bile flow, resulting in jaundice (yellowing of the skin and eyes). Some people also experience swelling in the belly or legs due to fluid retention (when the body holds on to too much water).

Chronic liver GVHD can progress silently, so regular monitoring with blood tests, imaging, or liver biopsies is important. Treatment often includes immunosuppressive medications (drugs that hold back the immune system) to reduce swelling and prevent scarring of liver tissue. Some people might need diuretics (water pills) to manage fluid buildup or nutritional support to maintain liver health. Early detection and treatment are key to preventing severe liver damage from GVHD.

6. Lungs

Lung problems from chronic GVHD are less common than mouth or skin symptoms, but they can have a serious impact. A 2023 study reported that about 14 percent of people with chronic GVHD develop a condition called bronchiolitis obliterans syndrome (BOS), which causes inflammation and scarring in the small airways of the lungs. Common symptoms include:

• Shortness of breath or difficulty breathing
• Persistent dry cough
• Wheezing or crackling sounds when breathing

BOS can make physical activity harder, leading to fatigue and reduced stamina. Early diagnosis of GVHD and treatment can help prevent further damage. If you notice new or worsening breathing problems, talk to your care team right away. With proper management, many people can maintain their quality of life and prevent further complications.

7. Joints and Muscles

Chronic GVHD can affect joints and muscles, causing pain, swelling, and stiffness that may limit mobility. In more severe cases, joint contractures — in which joints become permanently bent — may develop. Muscle-related symptoms, such as cramps and weakness, are also common.

These issues often occur due to inflammation and scar tissue forming around joints and muscles, gradually leading to reduced flexibility and strength. Physical therapy can be crucial for maintaining mobility, while immunosuppressants or anti-inflammatory medications may help reduce pain and an overactive immune response.

8. Genital Area

Chronic GVHD can also affect the genital area, causing discomfort and changes in sexual function. Chronic inflammation may lead to changes in skin texture, color, or elasticity. Vaginal dryness, irritation, or burning are common and can cause pain during sexual activity. Vaginal stenosis (narrowing of the vaginal canal due to scarring) may also develop. Inflammation, pain, or scarring in the penis or urethra can result in discomfort during sexual activity or urination.

Tell Your Doctor About All Your Symptoms

If you’ve had an allogeneic stem cell transplant and are experiencing any of these symptoms — or develop others that concern you — talk to your healthcare provider right away. Early diagnosis and treatment for GVHD can help prevent severe symptoms and life-threatening emergencies.

Talk 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 this condition.

In what ways has your body been affected by GVHD? Share your experience in the comments below.