Chronic Graft-versus-Host Disease (cGVHD)

Chronic graft-versus-host disease is common after a transplant using donor cells. It can affect the skin eyes, mouth and/or liver.

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Chronic graft-versus-host disease is a complication that develops in approximately 50 percent of patients who are transplanted with stem cells from a donor. Chronic GVHD is not a complication for patients who were transplanted with their own stem cells.

Chronic GVHD is different than acute GVHD. It usually develops later than acute GVHD and can affect more organs and tissues.

Most cases of chronic GVHD are mild or moderate. However, 10-15 percent of patients develop symptoms that are more severe.

Risk Factors for Chronic GVHD

Chronic GVHD occurs most often in patients who:

  • previously had acute GVHD
  • are older
  • had a mismatched or unrelated donor
  • were transplanted with stem cells collected from the bloodstream (peripheral blood stem cells), rather than bone marrow or cord blood
  • are male and received cells from a female donor
  • received cells from a female donor who had previously borne children

Organs Affected by Chronic GVHD

Chronic GVHD most often affects:

  • skin and nails
  • eyes
  • mouth
  • liver

Less frequently, chronic GVHD affects the:

  • lungs
  • intestines
  • joints
  • genitals
  • muscles
  • nervous system

Symptoms of Chronic GVHD

Like many conditions, chronic GVHD is easier to treat if detected early. Contact your doctor if you develop any of the following symptoms:

  • rash
  • skin discoloration
  • tightness or changes in texture of your skin
  • thinning hair
  • changes in texture of your nails
  • dry eyes
  • blurred vision
  • persistent dry mouth
  • mouth sensitivity to foods or toothpaste
  • vaginal dryness, irritation or tightening
  • penis irritation
  • nausea, vomiting, diarrhea, loss of appetite, unexplained weight loss
  • chronic cough, wheezing, shortness of breath
  • difficulty fully extending fingers, wrists, elbows, knees or ankles
  • fatigue
  • low grade fever

These symptoms may be caused by something other than chronic GVHD, but you should report them to your doctor immediately so that you can be evaluated.

Many primary care physicians are not familiar with the signs and symptoms of chronic GVHD. Ask your doctor to contact your transplant team, or call them yourself, if you suspect you may be developing chronic GVHD, since prompt treatment is important.

How is Chronic GVHD Treated?

How your doctor manages your chronic GVHD depends on which organs and tissues are affected, the severity of the symptoms and the impact chronic GVHD is having on your daily life.

If chronic GVHD is affecting only one or two organs or tissues, you doctor may choose a localized therapy, like a skin ointment, to manage your disease.

If it is affecting many different parts of your body, or if symptoms are severe and cannot be managed by a localized therapy, your doctor may need to give you drugs that suppress your immune system such as:

  • prednisone
  • prednisone with cyclosporine
  • prednisone with tacrolimus

If your GVHD does not respond to these drugs, your doctor may try other drugs such as:

  • ibrutinib (Imbruvica®)
  • methotrexate
  • mycophenolate mofetil (MMF, CellCept®)
  • sirolimus (Rapamune®)
  • extracorporeal photopheresis (ECP)
  • low-dose interleukin-2
  • ruxolitinib (Jakafi®)

Patients with chronic GVHD usually require treatment for three to five years.

Approximately 15 percent require treatment for a longer period of time and, in rare cases, may need life-long immunosuppressive drugs.  

If you are diagnosed with chronic GVHD, it is important that you take your medication even when you start to feel better. Stopping your medication too early can cause your GVHD to flare up again or worsen.

Watch a Video about Chronic GVHD (40 minutes)

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