Graft versus host disease (GvHD) is a complex illness that can happen after your transplant. Everyone’s experience of GvHD is different, so use our information together with the care provided by your medical and nursing team to get the support that’s right for you. Read more in our booklet about GvHD.
When you’ve had a stem cell transplant, there are still small differences between your new developing immune system and other cells in your body. 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 graft versus host disease.
Limited GvHD may be a good thing because it means that your new immune system is working and is likely to be attacking any remaining disease cells. This can help stop the disease coming back. (You might hear this called graft versus tumour effect or graft versus leukaemia.)
But too much GvHD can cause unwanted complications and side effects.
‘I first noticed the acute graft versus host disease in hospital around three to four weeks after my transplant; it started off with some red patches that my wife noticed.’
Paul had a transplant in 2014. Read more about his experiences of GvHD
GvHD can happen at any time, but particularly:
In the early weeks and months after your transplant, you might hear your team call GvHD ‘acute GvHD.’ The first sign of acute GvHD could be a rash, or an upset stomach with nausea, vomiting or diarrhoea, or it could affect your liver tests, sometimes causing jaundice (yellow discoloration to skin)
You might hear this called ‘chronic' GvHD. This may happen later on – from around 100 days after transplant. GvHD can then affect different parts of the body.
Your transplant team will closely monitor you for signs of GvHD with regular blood tests and physical examinations. If you have new symptoms, you might have more tests, or be referred to see a specialist.
You’ll be given immunosuppression – medicine to suppress your immune system and prevent GvHD. A common medication used is ciclosporin (or cyclosporin).
‘Depending on the area of the body, the GvHD will be treated in slightly different ways. If you’re on ciclosporin and you develop GvHD, steroids are usually the frontline treatment. They take away the inflammation and calm things down. Then we can add other treatments in combination, depending on where your symptoms are.’
John Murray, BMT Nurse Specialist. Read his blog Life with GvHD, part 1: What does it mean to have GvHD?
Dampening down the immune system
If you’re taking medication to suppress the immune system after your transplant, such as ciclosporin, your team might increase the dose. By suppressing your immune system, they can also reduce the GvHD.
If you’ve stopped taking the ciclosporin and GvHD has appeared, you might have to start taking it again.
Treating the part of the body where the GvHD is
You might be offered treatments just for the part of the body that’s affected (for example, creams for your skin, special mouthwashes, or drops for your eyes). For more information on treatment for different types of GvHD, read our booklet The Seven Steps: The Next Steps.
This is medication that can be taken as a tablet to help suppress the immune system even more. They’re a stronger form of immunosuppression.
Extracorporeal photopheresis (ECP)
‘I started receiving extracorporeal photopheresis five years ago at Rotherham Hospital to treat my GvHD. My consultant now thinks my GvHD has “burnt out” and so has reduced the frequency of my treatments to every three months.’
Alexandra had two transplants. Watch a video about her experiences with GvHD and find out what life is like for her now
ECP uses medication and ultraviolet light to treat GvHD. It can be used for skin, liver or oral GvHD – both acute and chronic. It’s usually suggested when you’ve had other types of treatment but your GvHD hasn’t improved.
It’s a complicated treatment and you’ll probably have to go to a hospital that has a skin specialist (dermatology) centre. It can take around six months for you to start seeing the benefits of this treatment, especially if you have severe skin GvHD.
Some people find that dealing with GvHD leaves them feeling tired and down. If you feel like things are getting too much, there is support available if you need it, as well as ways you can look after yourself.