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After treatment and remission

Chronic GVHD

Chronic graft-versus-host disease (GVHD) is a condition that can develop after a stem cell transplant from a donor. This topic explains what it is, which organs it affects, its signs and how it is treated.

Last updated: ~3 min read
Donor cells can react to the body’s tissues
Figure 1.Donor cells can react to the body’s tissues.

01Short answer

After an allogeneic (donor) transplant, the donor’s immune cells build a new immune system. Sometimes these cells see the body’s tissues as “foreign” and attack them — this is called GVHD. Acute GVHD usually starts in the first 100 days; chronic GVHD usually starts after 100 days, often within 3–6 months, and sometimes later. Chronic GVHD can affect many organs: the skin (dryness, colour change, tightening), eyes (dryness, topic “Eyes”), mouth (sores, dryness, topic “Teeth”), lungs (breathlessness), digestive system and liver, joints and muscles, and genitals (topic “Sexual health”). It can range from mild to severe. Mild GVHD also has a benefit: donor cells may attack any remaining leukaemia cells (the “graft-versus-leukaemia” effect). Treatment usually starts with steroids; other immune-suppressing medicines, targeted medicines (such as ruxolitinib) or photopheresis may be added. Treatment can last months or years; early detection helps prevent serious complications.

02Simple explanation

GVHD is a reaction of donor cells to the body.

The chronic form usually starts after 100 days.

It can affect skin, eyes, mouth, lungs, liver, joints.

Treatment: steroids and other medicines.

Early detection reduces complications.

03Scientific explanation

Timing: according to the NMDP, chronic GVHD usually begins 3–6 months after transplant, but signs can appear earlier or later; most people who have an allogeneic transplant have some symptoms.

Treatment: according to CRUK, treatment of chronic GVHD usually starts with steroids, sometimes with ciclosporin; other options include ruxolitinib, sirolimus, rituximab, mycophenolate and extracorporeal photopheresis (ECP).

A helpful effect: CRUK and the NMDP note that donor cells can also attack leukaemia cells; so the aim is not to remove GVHD entirely but to control severe forms.

Infection risk: according to MedlinePlus and the NCI, GVHD treatment weakens immunity; infection-prevention medicines and a vaccination plan are important.

04What happens in the body?

What is GVHD?

The donor’s immune cells treat some of your body’s tissues as “foreign” and attack them. It happens only after a donor transplant.

Which organs does it affect?

Most often the skin, mouth and eyes; also the lungs, stomach and bowel, liver, joints and genitals.

Chronic GVHD can affect many organs
Figure 2.Chronic GVHD can affect many organs.

Early signs

Dry, rashy or tightening skin, dry and irritated eyes, mouth sores or sensitivity to spicy food, breathlessness, stiff joints and weight loss.

Treatment

Steroids and other medicines that calm the immune system; local treatments (eye drops, skin creams, mouth rinses) and physiotherapy. Medicines must be taken exactly as prescribed.

A blue wave calming cells.
Figure 3.Treatment calms the immune reaction.

Everyday care

Protect yourself from the sun and moisturise your skin, look after mouth and eye hygiene, stay active, follow the vaccination plan with your doctor and report new signs straight away.

When to call your doctor

Worrying signs — fever, bleeding, new pain, breathlessness — should be reported to your doctor between visits too. Getting in touch early is always better than waiting.

05Living with chronic GVHD

Steps.

Watch — Skin, eyes, mouth changes.1WatchSkin, eyes, mouth changes.
Call — Your transplant team promptly.2CallYour transplant team promptly.
Medicines — Take exactly as prescribed.3MedicinesTake exactly as prescribed.
Protect — Sun protection, moisturising.4ProtectSun protection, moisturising.
Early detectionSigns are found early.
ControlThe reaction settles.
ProtectionFewer infections.

06Areas affected by chronic GVHD (simplified)

AreaPossible signsWho helps
SkinDryness, colour change, tighteningDermatologist
EyesDryness, gritty feelingEye specialist
MouthSores, drynessDentist
LungsBreathlessness, coughLung specialist
Joints, musclesStiffness, limited movementPhysiotherapist

* The transplant team coordinates treatment.

07Key terms

GVHD
Graft-versus-host disease.
Allogeneic transplant
A stem cell transplant from a donor.
Immunosuppression
Treatment that weakens the immune system.
Steroid
A medicine that reduces inflammation and immune reactions.
Photopheresis (ECP)
Treating blood cells with light.
Graft-versus-leukaemia
Donor cells attacking leukaemia.

08Key points

  • Chronic GVHD is common.
  • Know the early signs.
  • Report new signs straight away.
  • Do not stop medicines yourself.
  • Protect yourself from infection.
  • Protect yourself from the sun.

09Frequently asked questions

Will chronic GVHD go away?

For many people it settles over time with treatment and medicines are reduced; the timing is individual.

Is mild GVHD useful?

Yes, donor cells can also fight leukaemia.

What about steroid side effects?

Your doctor monitors bones, blood sugar and blood pressure; only they change the dose.

Can I have vaccines?

Yes, following your transplant team’s plan; live vaccines only with their approval.

Does this information replace medical advice?

No. This is general education; only your treating doctor can assess your situation.

10Questions for your doctor

Take these questions to your appointment. The ones you save are collected on the “My questions” page and stay on this device only.

  1. Will chronic GVHD go away?

  2. Is mild GVHD useful?

  3. What about steroid side effects?

  4. Can I have vaccines?

  5. Does this information replace medical advice?

My questions

12Sources

  1. Cancer Research UK. Graft versus host disease (GvHD)
  2. Cancer Research UK. Treatment for chronic GvHD
  3. NMDP. Living Now: What is Chronic GVHD?
  4. MedlinePlus (U.S. National Library of Medicine). Graft-versus-host disease
  5. National Cancer Institute. Stem Cell Transplants in Cancer Treatment
  6. Children's Oncology Group. Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent and Young Adult Cancers
  7. National Cancer Institute (NCI). Follow-Up Medical Care
  8. National Cancer Institute (NCI). Cancer Survivorship
  9. Cancer.Net (ASCO). Follow-Up Care After Cancer Treatment
  10. Leukemia & Lymphoma Society (LLS). Long-Term and Late Effects of Treatment
Medical disclaimerThis information is for educational purposes only and does not replace medical advice.
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