Graft-versus-host disease (GVHD) Treatment

Steroids, like prednisone, are the main treatment for GVHD. Steroids are a kind of medicine called an immunosuppressant. These medicines weaken the new immune system so your new cells don’t attack your body. Starting GVHD treatment as early as possible can lead to better results.

Because your new immune system is weaker, you may be limited in what you can do, even if your transplant was more than 1 year ago. For example, you may need to avoid yard work and large crowds. Ask your doctor what you may need to avoid.

Follow your doctor’s advice carefully. Don’t stop taking your GVHD medicine without letting your doctor know. If you can’t take them for any reason, tell your doctor right away. If you can’t swallow your medicines, you may need to get them through an intravenous (IV) line (directly into your bloodstream) temporarily.

GVHD treatment works well for many patients. You may need to be treated for weeks or months because it can take time to find the best type and dose of medicine with the fewest side effects for you.

For patients with GVHD who’ve not gotten better after treatment with steroids, ECP is a standard treatment for a blood cancer that affects the skin. ECP is a treatment where blood is withdrawn from you, infused with light and then pumped back into you.

Living with chronic graft-versus-host disease (GVHD) can be stressful. It’s helpful to focus on positive ways to cope with the disease during treatment and recovery.

• The medicine used to treat chronic GVHD is most often steroids. Prednisone is a commonly prescribed one. Steroids and most medicines to treat chronic GVHD hold back (suppress) your immune system.
• You may need medicines to help prevent infections and to help manage side effects from treatment. These include medicines to control blood pressure or blood sugar, prevent stomach irritation or strengthen your bones.
• If prednisone doesn’t work for you or you can’t take high doses of it, your doctor may recommend another treatment. There are many other options.
• It’s common for symptoms to worsen when your doctor lowers the doses of your medicine. Tell your doctor about your symptoms so together you can find the right doses for you.
• Don’t stop or change treatment without talking with your doctor first.

• The length of treatment is different for each person. You may need treatment for months to years. Your transplant doctor will decide how long you’ll get treatment.
• What treatments you get and how long you get them will depend on how the GVHD is affecting your body. You may also need to see many doctors and specialists for a long time.

• Learn about your medicines and their side effects. Talk to your doctor about any new treatments. Asking questions can help you and your doctor decide what the right treatment is for you.
• Eat a healthy diet. Cut back on salt and sugar. Be sure to get plenty of calcium.
• Drink water.
• Exercise and stretch regularly.
• If you have chronic GVHD of the skin and deeper tissues, ask your doctor if seeing a physical therapist could help.
• Visit an eye doctor, a dentist and skin doctor regularly to watch for early signs of mouth and skin cancer.
• Avoid smoking and excessive alcohol use.
• Wear protective hats and clothing to protect your skin from the sun.
• Ask your doctor if you need any vaccines.
• Report any new symptoms to your doctor right away. Chronic GVHD can also cause new symptoms, even many years after you start treatment.

• Talk to your doctor to see if you’re able to go back to work.
• If you can’t go back to work because of chronic GVHD, talk to your employer’s human resources (HR) department. Ask about resources they may have, such as health and wellness, employee assistance, disability management or return-to-work programs.
• Tell your doctor if you have trouble paying for your medicines.
• Financial assistance may be available to help with treatment costs.
• Talk to a social worker or financial counselor at your transplant center. They can help you find resources and support to deal with financial or employment concerns.
• Employment help is available from many public and nonprofit organizations such as:
  • Cancer Legal Resource Center
  • The U.S. Office of Disability Employment Policy

• It’s natural and common to feel sad, frustrated and angry. It can help to talk with others about your situation. Consider joining a support group or talking to a counselor. It may help to know you’re not alone.
• Look forward to things that you enjoy or different ways to relax. Also, be as active as you can. Staying active may improve your overall coping and emotional wellbeing.
• Tell your health care team if you have distress, anxiety or sexual problems. They can connect you to resources or people who can help.
• Talk to a counselor. They can help you resolve problems related to GVHD and improve your coping skills and quality of life.
• For free telephone counseling, contact the NMDP Counseling Services at 1 (888) 999-6743 or email patientinfo@nmdp.org. Or, learn more at nmdp.org/counseling.

Early diagnosis and treatment of GVHD is critical to prevent permanent damage to organs. While rare, severe cases of GVHD can be life-threatening. Studies show a strong connection between first-line steroid treatment and patient survival.

Everett has been managing chronic GVHD of the skin for years. It’s been an ongoing challenge not only physically, but emotionally, too. He had a defining moment many years ago with his doctor. “After a frustrating time with my GVHD, I asked if she could just fix it and she said, ‘No. You have this.’ That’s when I really knew that this is something I would have to manage for life,” he says. It’s a realization that can be difficult for many people.

The NMDP Patient Support Center offers free confidential counseling services. We provide one-on-one support by phone to help you and your loved ones cope with transplant and recovery.

People may feel frustrated with the GVHD itself or all the ways it affects their life. No matter how you’re feeling, everyone needs support. Here are some tips for coping with the emotional challenges of chronic GVHD:

• Write down how your feeling. For some people, writing in a journal can help make sense of their feelings about GVHD.
• Talk with other people who have also dealt with the effects of transplant. You can connect with another transplant recipient or caregiver through NMDP’s Mentor program. Connect with friends and family. Share how you’re feeling with a trusted friend.
• Talk with a mental health professional, like a licensed social worker, a psychologist, or a faith leader. Talk about ways to cope that work for you.