Why Chronic GVHD Can Affect Mobility — and What You Can Do to Keep Moving

If you have chronic GVHD, here are some ways your mobility may be impacted.

Skin Tightening and Scarring

Thickened, hardened skin can restrict joint movement and make bending or stretching painful or difficult, says Christian Custodio, MD, a rehabilitation medicine specialist at Memorial Sloan Kettering Cancer Center in New York City. “Skin tightening is one of the more common manifestations,” he says.

Hardened, scarred skin can also prevent healing – for example, causing a simple abrasion like a blister to turn into an ulcer and limit mobility, explains Amin Alousi, MD, a hematologist-oncologist and the director of the graft-versus-host clinic and research program at MD Anderson Cancer Center in Houston. “This is a rare and severe complication of GVHD,” he says, but an important one to avoid to preserve movement.

Joint and Fascia Involvement

GVHD can tighten the fascia (the connective tissue around muscles, organs, and joints). “With tightening of the skin and the fascia tissue, people can lose joint range of motion,” says Dr. Custodio. “That stiffness impairs their ability to move their hands, shoulders, and legs — and that's going to cause mobility issues.” If not addressed, the stiffness can also lead to permanent shortening of muscles or tendons, known as contractures.

Muscle Weakness

The medications you’re taking to treat GVHD may also cause mobility issues. “The first-line treatment of graft-versus-host disease is steroids or corticosteroids,” says Dr. Alousi. “And one of the side effects of steroids, especially when used in high doses, is muscles becoming weakened over time — a condition we call myopathy.”

Nerve Involvement

Nerve involvement can be a symptom with GVHD, which can affect mobility. “We have nerves that run through the skin and connective tissue, so when the skin becomes thickened and hard, that can sometimes result in pain and neuropathy,” says Dr. Alousi.

Issues with nerves may also stem from treatment prior to a transplant. “A lot of patients have undergone various regimens of chemotherapy — and those treatments can cause some of these patients to develop neuropathy,” says Custodio.

Try these steps to maintain and increase mobility.

1. Physical or Occupational Therapy

To help preserve flexibility and prevent permanent joint stiffness, your care team may prescribe physical therapy, occupational therapy, or both. According to Custodio, whether the impairment is in your "shoulders, hips, hands, or knees" will dictate which therapy you need.

A physical therapist focuses on mobility and safety; for instance, they can help minimize falls, which are a higher risk when skin thickening around the ankles and feet affects your balance, says Alousi.

An occupational therapist focuses on function and joint mobility. At MD Anderson, this may include specialized programs to reverse contractures with a specialized cast that holds the joint and stretches tissues, says Alousi.

Your medications can also play a role. Long-term or high-dose steroid use can weaken muscles, a condition called myopathy, explains Alousi. “Because steroids can cause muscle weakness, we often proactively refer patients on steroids to physical or occupational therapy to maintain strength and prevent significant myopathy,” he says.

2. Daily Gentle Movement

Stretching and range-of-motion exercises can help with mobility, but these movements need to be tailored to your exact needs. “People with GVHD need very special, individualized stretching to treat target areas,” says Alousi. “Stretching is very specific to where the scarring is and geared to where the limitations are.”

3. Medications

Immunosuppressive treatments prescribed by your transplant team can reduce inflammation and slow or prevent tissue damage. “Medicines like tacrolimus and belumosudil address the autoimmune effects of GVHD, and that in turn helps improve mobility or diminish the effects it can have on mobility,” says Custodio. “They can help with softening of the tight skin and loosening of the joints, and that should help improve pain, joint range of motion, and mobility.”

In addition, topical medications such as topical tacrolimus and steroids can further help preserve the integrity of the skin and allow for better range of motion and stretching, says Custodio.

Mobility limitations with GVHD are complex and affect everyone differently, so care needs to be personalized. Take time upfront to talk through your specific symptoms and challenges with your doctor, says Custodio. “Raising any concerns as early as possible to your oncologists or other providers — and getting it assessed and managed early — is going to give you the best chance to preserve and improve your function and mobility,” he says.

• Mobility issues are common in chronic GVHD due to symptoms such as skin tightening, joint stiffness, and muscle weakness.
• Tailored stretching, physical and occupational therapy, and medications can help prevent or slow down scarring and contractures to maintain and improve mobility.
• Mobility challenges with GVHD aren’t one-size-fits-all, so regular check-ins with your care team are key.