Chronic graft-versus-host disease (GVHD) can affect many parts of the body. It can cause dry eyes, skin lesions, dry mouth, brittle hair, problems with the heart and liver, and a higher risk of infection. It can also affect the joints, leading to pain, swelling, and trouble moving.

If your oncology team has advised you to watch for signs of chronic GVHD or acute GVHD in yourself or a loved one after a stem cell transplant or a bone marrow transplant, pay attention to symptoms such as joint pain, inflammation, or joint stiffness. You may need to check in with your doctor about these signs.

If you have chronic GVHD affecting your joints, understanding your condition helps you work with your medical team to find effective treatment and improve your quality of life.

1. GVHD Can Affect the Musculoskeletal System

Your joints are part of your musculoskeletal system, which includes your bones, muscles, and connective tissues. While joint problems are not always the primary focus in chronic GVHD, they are still common. A 2024 study found that 75 percent of people with chronic GVHD had joint and muscle pain, and 36 percent had severe symptoms.

Few studies have focused on joint involvement in GVHD, and most examine single cases or small groups of people rather than large studies. Researchers are still working to identify whether there are specific markers in the body that would mean the joints are involved, and they also need to study how to treat chronic GVHD in the joints. Right now, there’s no blood test doctors can use to confirm if chronic GVHD is affecting the joints.

2. GVHD Can Lead to Inflammation and Joint Problems

Chronic GVHD is often linked to inflammation, which can affect different parts of the body, including muscles and joints. For example, some people experience it in their muscles or their fascia (the tissue that supports and surrounds muscles and organs), which may affect nearby joints, particularly if it causes people to change how they move or bear their weight differently. Thickening of the skin due to inflammation can also limit movement in the nearby joints. Inflammation in the joints may be less common, but more research is needed to confirm this.

3. GVHD Can Cause Pain, Stiffness, and Swelling in Your Joints

Inflammatory processes in the body have long been related to pain, so people with higher levels of inflammation due to chronic GVHD may experience more pain, including GVHD joint pain. People living with chronic GVHD that affects their joints also report swelling and changes in how their joints move. For instance, their joints may feel stiff, or they may have trouble fully bending or extending a particular joint or joints. Others may develop contractures, where their joints become stiff or locked in an uncomfortable position.

4. GVHD Can Impact Your Daily Life

Chronic GVHD may cause joint pain, muscle weakness, fasciitis (inflammation of connective tissue), or fibrosis (thickening and scarring of tissue), making it hard to move or care for yourself.

If you’re in pain, for instance, you may feel like your quality of life goes down. You may also be unable to participate in activities that you once loved, particularly if they involve a lot of walking or moving around.

Chronic GVHD that affects your joints may make it harder for you to take care of yourself. If your hand joints are swollen or locked in place, it can make daily tasks like cooking, cleaning, shopping, or spending time with friends harder. It may also make it hard for you to work, which can affect your livelihood as well as your mental health and self-esteem.

GVHD That Affects Your Joints Can Be Treated

There are many ways that chronic GVHD affecting your joints can be treated.

Working with a physical therapist or an occupational therapist (or both) may be key to helping you feel better. Based on what is going on with your body, they may recommend massage, stretching, ice or heat (or both), stimulation of the painful area with an electronic circuit called a transcutaneous electrical nerve stimulation (TENS) unit, or specific exercises. These professionals can provide devices to ease daily tasks, like dressing, reaching for objects, or grooming, and may offer splints or braces to prevent joint stiffness.

You may want to see a dietitian to find out if changing your diet could help reduce inflammation. They often recommend eating plenty of protein, healthy fats, and fiber-rich foods like whole grains, fruits, and vegetables. Your doctor can help you choose foods you like while making sure you get the nutrients you need.

Medications are also likely to be part of your treatment for chronic GVHD that affects your joints. Pain medications will help you feel better as they lessen your GVHD joint pain. Corticosteroids and medications for your immune system will help treat chronic GVHD in general, so they should help with symptoms of chronic GVHD in your joints, too.

A small study found that baricitinib (Olumiant) may help treat GVHD joint symptoms, but it only included two people. More research is needed to determine whether this medication could help others with chronic GVHD-related joint symptoms.

Baricitinib is already used to treat other conditions, including rheumatoid arthritis, severe COVID-19, and alopecia areata, a condition that can cause patchy hair loss when the immune system attacks hair follicles. It works by changing how certain parts of your immune system work. If your current treatment isn’t helping your joints, talk to your doctor about other options, including baricitinib. This medication can have side effects, so your doctor may be cautious about prescribing it.

Getting Support for GVHD

If you have chronic GVHD and think it’s affecting your joints, talk to your healthcare provider today. They can order blood tests, check for risk factors, and find treatments to help you feel better and manage the condition more easily.

GVHD can also affect your daily life and well-being. Your doctor can connect you with mental health support if needed. Regular checkups can help you manage both the physical and emotional challenges of GVHD.

Talk With Others Who Understand

On myGVHDteam, the site for those 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.

Are you living with chronic GVHD? How does it affect your joints? Share your experience in the comments below.