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Managing graft-versus-host disease (GVHD)

If you develop GVHD after a stem cell transplant, your care team will recommend ways to manage it based on at least three factors:

  • Whether you have acute or chronic GVHD
  • What parts of your body are affected
  • How severe your GVHD is

Because GVHD involves an attack by donor immune cells (graft) on the receiving patient’s body (host), the main way to manage it is to suppress or “tamp down” that immune response. Doctors use different medicines and therapies to do this.

Systemic therapies include medicines you take by mouth or intravenously that can treat GVHD throughout your whole body. Local therapies include prescription skin creams, eye drops, mouth rinses, and others that treat specific areas of the body.

Managing GVHD often requires trying different options, or combinations of them, to find what works best for you.

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The information provided on this page should not be considered medical advice or an endorsement of any specific management approaches. You should rely on your healthcare providers for medical recommendations that are right for you.

Steroids: the standard first step

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What are these?

Corticosteroids (or “steroids”) are usually the first-line medicine for managing both acute and chronic GVHD. Doctors have used steroids for decades to treat many conditions that involve inflammation.

Systemic steroids, taken by mouth or intravenously, work broadly to suppress your immune response and reduce inflammation that can lead to tissue damage.

Once your GVHD improves, doctors start to gradually lower the dose of steroids. This process is called tapering. Doctors taper and eventually discontinue steroids because they can cause serious side effects when taken long-term, especially at high doses.

What else to know:

  • For many patients, steroids work well for managing GVHD. Unfortunately, they don’t work well for about 50% of patients. For some, their GVHD just doesn’t improve. This is known as steroid-refractory GVHD. For others, their GVHD worsens or “flares” when their steroid dose is tapered. This is called steroid-dependent GVHD.
  • When steroids don’t work well enough for GVHD, doctors turn to other options. Currently, there is no standard next-step (or second-line) therapy that all doctors choose.
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Non-steroid immune-suppressing therapies

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Oral therapies

What are these therapies?

Your care team may prescribe one or more non-steroid immune-suppressing medicines that you take by mouth.

Helpful hints:

  • It’s important to be organized. Using a medicine tracker—whether it’s printed, online, or a mobile app—can help ensure you don’t miss doses. It also allows you to track other medicines you are taking.
  • Many trackers also give you space to take notes about how you’re feeling along the way—so you can share this important information with your care team.
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Intravenous and infused therapies

What are these therapies?

Your care team might also prescribe an immune-suppressing or anti-inflammatory therapy that’s given through an intravenous (IV) tube placed in an arm or hand vein. In general, you’ll need to visit a healthcare office or special infusion center to receive these kinds of medicines.

Helpful hints:

  • Some IV sessions can take a while. So it can be helpful to bring a book or other activity or to have a friend or family member with you to help pass the time.
  • Be sure to wear comfortable clothes to help you feel relaxed and to arrive well hydrated so it’s easier for your care provider to insert the IV.
  • If you have trouble with vein access, talk to your nurse about the possibility of using numbing cream to minimize pain or a warm pack to help dilate your vein for easier access.
  • It’s also a good idea to make sure your infusion day is all clear, so there’s time to stick around after your session to make sure you’re not having any reaction and to rest once you’re home.
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Extracorporeal photophoresis (ECP)

What is this therapy?

ECP may be used for symptoms in several areas of the body, especially the skin. With ECP, a special machine treats your white blood cells with a medicine and UV radiation that activates it.

Helpful hints:

  • Be patient. It may take some time for ECP to produce improvement in chronic GVHD symptoms.
  • The machine used for ECP removes your blood through an intravenous (IV) tube, treats the white blood cells, and then returns it to your body.
  • Each session can take up to 2 hours or more. You may also need to do several sessions per month. To receive ECP, you’ll need to live near or be able to travel to a treatment center that offers it.

Local therapies for specific GVHD symptoms

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Did you know?

GVHD is a robust area of research. New insights about what happens in the body’s cells and genes when GVHD develops are helping scientists develop new ways to potentially treat and help prevent it.

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What are these therapies?

While systemic (or whole-body) options for managing GVHD are essential for many patients, local therapies can be helpful add-ons for easing symptoms in specific areas of your body. In fact, many patients take to calling their GVHD by the symptoms they’re experiencing—whether skin GVHD, eye GVHD, mouth GVHD, or so on.

These options can range from topical creams and rinses you can apply directly to the affected area to specialty treatments like physical therapy for muscle or joint issues, special lenses for eye GVHD, or inhalers for lung GVHD. Transplant teams may refer patients to specialists for this kind of care—such as a dermatologist for skin issues, an ophthalmologist for eye issues, or a gastroenterologist for digestive issues. These specialists can also offer regular checkups and wellness tips for taking care of yourself.

Helpful hints:

  • Be sure to contact your transplant team for a recommendation before you seek specialty care—even if you don’t live near the transplant center or aren’t sure your symptoms are GVHD-related! Some doctors may not be familiar with GVHD or the special needs of patients who’ve had stem cell transplants. Your team can help you find someone in your area who is. Or they may be able to consult with a specialist you already know to ensure he or she understands your care needs.

Resources and information

For information on supportive therapies for managing skin, eye, mouth, and many other GVHD issues:

Clinical trials for GVHD

Researchers are working hard to find new ways to help prevent GVHD and better ways to treat it. Your transplant team may recommend joining one of these carefully controlled research studies, called clinical trials. Or you might be interested in learning more about them. Being part of one can give patients access to promising, investigational GVHD treatments. It can also help researchers learn more about GVHD from your experience.

Resources and information

These sites offer information on how clinical trials work and what current GVHD studies may be available to you:

US National Library of Medicine

The definitive source on privately and publicly funded clinical trials throughout the United States and 204 other countries. Searchable database of current studies.

Chronic Graft-Versus-Host Disease Consortium

Links to consortium-supported clinical trials on late acute GVHD and chronic GVHD and information on joining.

The Leukemia & Lymphoma Society (LLS)

A trained specialist can work one-on-one with patients and caregivers to answer questions and personally assist them throughout the clinical trial process.

Helps connect patients with appropriate clinical trials related to blood cancers and disorders, as well as programs that offer help with study-related expenses, such as transportation and lodging.

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Did you know?

With chronic GVHD, most people remain on some type of therapy for 2 to 3 years, but this can vary. Some patients’ GVHD must be managed for longer periods.