Graft versus host disease (GvHD)

Anthony_Nolan_Patients_&_Families_100617_0678

GvHD stands for ‘graft versus host disease’. The word ‘graft’ simply means your donor’s cells, and the ‘host’ is you.

When you have a stem cell transplant, your donor’s cells will form your new blood and immune system. Your immune system keeps your body safe from infections caused by bacteria, viruses and fungi that are not part of you. It also scans your body’s own cells and removes any that don’t appear to be ‘normal’, such as those turning into cancer cells.

There are still small differences between your new immune system and other cells in your body after you've had a stem cell transplant. As a result, your growing immune system may harm some of the cells in your own body because it sees them as ‘different’. This is called GvHD.

Some GvHD can be a good thing because it means that your new immune system is working and is likely to be attacking any remaining or returning disease. This can be referred to as ‘graft versus leukaemia effect’ or ‘graft versus tumour effect’. However, too much GvHD can cause unwanted complications and side effects. At its worst, GvHD can be life threatening.

GvHD is not yet fully understood and it’s difficult to predict who will get it and who won’t. We know that about half of people who have a transplant will get GvHD. Often, it’s very mild but for some people GvHD can be more severe and can affect their quality of life.

This section looks at the following topics

What types of GvHD are there?
When am I likely to get GvHD?
What are the treatments for GvHD?
GvHD in different organs
What is extracorporeal photophoresis (ECP)?
Top tips for managing GvHD

This information is also available as a free booklet you can download (PDF 486KB) or order.

What types of GvHD are there?

There are four classes of GvHD:

Acute: Happens in the first 100 days after transplant
Chronic: Happens after 100 days post-transplant.
Progressive: When acute GvHD progresses to chronic GvHD
Overlap: When features of acute and chronic GvHD happen together

Once classed, GvHD is then given a grade which is used to guide treatment and to help monitor improvements. Grading is based on symptoms and the number of organs involved. Some transplant centres slightly adapt the grading system they use, so it’s best to check how they measure yours.

When am I likely to get GvHD?

GvHD can occur at any time, so it’s important to report any symptoms after transplant to your team. However, the most common times to experience GvHD are:

When your immune cells start to come back and appear in your blood, usually a few weeks after your transplant.
When the medication that suppresses your immune system is reduced, usually a few months after you go home. The immune cells become more active, notice there’s a difference in your body’s cells and may start an attack.
If you have a donor lymphocyte infusion (DLI) – this is a top-up of donor cells which can sometimes be given if your new immune system needs a boost.

Some symptoms are quite general and don’t always mean you have GvHD. Your medical team will perform tests that might include biopsies (skin or liver GvHD) or use a small camera to look closely at the organ (stomach or lung GvHD). These tests can confirm the GvHD diagnosis.

What are the treatments for GvHD?

Treatment for GvHD varies depending on the organ involved. It can be broken down into:

Local - This includes creams for skin GvHD, drops for eye GvHD and physiotherapy for GvHD of the joints.
Oral - Immunosuppressive medication (cyclosporine, mycophenolate or tacrolimus) will be given before your transplant to suppress your immune system and allow new stem cells to grow. If you develop GvHD, the dose might need to be increased for a while to control your symptoms. Oral steroids may also be used for immunosuppression. Once the GvHD has improved, these medications will slowly be reduced again.
Intravenous - Might be used if oral medications don’t control the GvHD. This might require an admission into hospital for treatment.

In some cases, acute or chronic GvHD cannot be controlled with these medications so further treatment, such as extracorporeal photopheresis (ECP) or referral to a specialist might be needed.

GvHD is usually very treatable - it's all about keeping things under control and finding the right balance of medications.
Debbie Anderson, Anthony Nolan Clinical Nurse Specialist

GvHD in different organs

Skin
Symptoms: Acute and chronic skin GvHD symptoms are very similar. Your skin is likely to become dry, red and itchy and it could affect multiple areas of your body. This can affect your appearance, ability to regulate your temperature and lead to infection if the skin is broken.

Treatment: Some cases need no treatment and improve naturally. Mild cases are treated using moisturises or steroid cream. Medication to supress your immune system in more severe cases and treatments such as ultraviolet light and extracorporeal photopheresis (ECP) are possible options.

Gut
Symptoms: Gut GvHD could affect your mouth, oesophagus (food pipe), stomach and bowel. Acute gut GvHD usually affects the bowel. You could have sickness, diarrhoea, indigestion, cramping feelings and lack of appetite.

Treatment: Mild cases don’t need treatment but dehydration should be avoided by drinking lots of fluids. More severe cases might need anti-diarrhoea medication, painkillers to ease cramps and anti-sickness drugs to stop you feeling sick.

Mouth
Symptoms: Your mouth may become sore and dry because you aren’t producing enough saliva. This may lead to ulcers forming and can make your food taste unusual.

Treatment: Visit your dentist regularly if you have mouth GvHD. Practising good oral hygiene and using a steroid mouthwash may also help.

Liver
Symptoms: To begin with you might not feel anything but your doctor might find out that something is wrong by testing your liver function. If it becomes worse you may become jaundiced, (yellowing of skin) and your skin may itch. Your liver may also swell in size, causing abdominal pain.

Treatment: Steroids and other drugs to suppress your immune system.

Lung
Symptoms: Your lungs can lose some of their flexibility and elasticity, making you feel short of breath, wheezy and prone to coughs and chest infections. You might find exercising becomes more difficult. If you experience any of these symptoms you should contact your medical team straight away.

Treatment: Tests such as lung function, chest X-rays, CT scans and sometimes bronchoscopies (a type of endoscopy that looks inside your airways) to find out what’s causing your problems and rule out infection.

Eyes
Symptoms: Your eyes may become itchy, dry and uncomfortable or they may water almost continuously. They may also be sensitive to bright light.

Treatment: Referral to an ophthalmology specialist that can prescribe a combination of eye drops, anti-inflammatories or antibiotics depending on your symptoms. Wearing sunglasses may also help.

Muscles & joints
Symptoms: Restricted movement and pain in the joints of your arms and legs, making tasks such as driving or climbing stairs more difficult. Some patients experience swollen joints.

Treatment: Physiotherapy can improve your symptoms and will involve doing lots of stretches and keeping your joints mobile.

Genitals
Symptoms: Women may experience vaginal dryness, narrowing of the vagina and ulceration in advanced cases - causing pain and discomfort during sex.

Men may experience sensitivity or a rash on their penis and it could be uncomfortable to pass urine. They may also experience problems maintaining an erection.

Treatment: Women will be referred to a gynaecologist that may prescribe a steroid cream or gel to combat dryness. Men will be referred to a urologist and may also be prescribed a steroid cream to reduce sensitivity.

If there are 100 symptoms of GvHD - I've had 99. My skin, hair, scalp, eyes, mouth, lungs and intestines have been affected. I've had aching joints and muscles, sinus problems and thickening of the skin around my ankles - they look like my old nan's legs now!
Paul had a stem cell transplant in 2014. You can read about his experience with GvHD here.

What is extracorporeal photopheresis (ECP)?

ECP is a treatment used for acute and chronic skin, liver and oral GvHD. It aims to destroy the white blood cells that cause GvHD by combining a medication called methoxypsoralen (8-MOP) with ultraviolet (UV) light.

The procedure involves being attached to a machine that removes your blood through a cannula and drip. It then separates the white cells from your blood, before returning the blood to your body. The white blood cells are then exposed to UV light and 8-MOP to destroy the cells that cause GvHD, and returned to your body.

Treatment can take 1–2 hours. You might start by having two appointments per week, every fortnight. Over time (depending on your response) treatment cycles are likely to reduce. ECP for acute GvHD responds quite quickly, whereas ECP for chronic GvHD can take six months or more before any improvement. In some cases, treatment can last 12–18 months or longer.

Referral for ECP can seem daunting, due to the length of treatment. Sometimes patients delay it as long as possible – but the timing of ECP is crucial for it to be most effective. It’s essential that if your doctor suggests a referral for ECP you consider it carefully. Leaving it too long could reduce the effectiveness of the treatment.

I find it really relaxing! The machine itself can be a bit noisy, but you get used to it and you’re looked after well.
Sam, who receives ECP to treat his GvHD. You can read Sam's blog here.

Top tips for managing GvHD

Report any changes in your GvHD to your transplant team immediately. GvHD can worsen quickly if not treated appropriately. Call your CNS or a member of the team who can offer advice and in most cases prevent the need to come into clinic.
Take your immunosuppression medication as advised. This is one of the most important medications you’ll need to take.
GvHD and its treatment can have knock-on effects so you might be referred to other healthcare professionals such as a dietician or physio. It’s important that you follow their advice to prevent weight loss, manage fatigue and maintain fitness.
Treatment for GvHD can put you more at risk of infection, so report any change in your temperature to your transplant team immediately.

It’s really important to take the medication including creams, eye drops and mouth washes regularly. It’s also helpful to keep up with other things where you can, like exercise and catching up with friends. It can improve your quality of life between what can be a gruelling schedule of clinic visits.
Dr Fiona Dignan, consultant in haemato-oncology at Manchester Royal Infirmary, you can read her blog on GvHD here.

Information published: 02/09/21
Next review due: 02/09/24