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Life with GvHD, part 2: Looking after yourself in the long-term

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John Murray is Nurse Clinician in BMT at The Christie NHS Foundation Trust. He’s been working with patients post-transplant since qualifying as a nurse in 1991, and has a special interest in GvHD.

Here John explains how to take care of yourself in the long-term if you have, or you’ve had, GvHD.

For more information, you can read Part 1 of John’s Q&A, What does it mean to have GvHD?, which includes his explanation on what GvHD is, why it affects some people and not others, and how long it can last.


Can GvHD return, even after it’s cleared up?

John: Yes, acute GvHD can come back. It waxes and wanes, and you might have two or three or even more cycles of it, so you’ll need to take steroids again. It might be the same symptoms that return –gut GvHD is a common one to come and go – or it could crop up somewhere else.

With chronic GvHD, when you do get on top of it and it goes, it doesn’t tend to come back afterwards.

What can I do to stop it coming back?

John: Although there’s no way to guarantee that GvHD won’t come back, it’s really important to do whatever you can to stop infections, because they can trigger it. General hygiene is really important, especially being meticulous with your hand hygiene. Try to keep the house clean and tidy, and let your friends and family know that if they have infections, they need to stay away until they’re better.

It’s particularly vital to protect yourself from infection if you’re on steroids and ciclosporin – because these suppress your immune system – but you need to be vigilant even if you’re not taking these drugs.

Is there anything else I can do to take care of myself?

John: Do everything possible to avoid any problems! Take your medication as often as your clinician tells you to. If you have eye GvHD, wear dark glasses whenever you go out – they keep the wind and debris out, and that helps stop you rubbing your eyes with your hands, which could cause an infection.

See a dentist at least every 6 months – steroids can damage the enamel of your teeth, and dental abscesses and infections are a serious risk if you have oral GvHD. Speak to your GP to make sure you’re up-to-date with all of the national screening programmes, like breast screening, smear tests, and well man clinics. You’ll also need to make sure you’ve been revaccinated post-transplant.

Diet is important, too. You should eat a healthy and balanced diet, but there’s no need to take vitamin and mineral supplements unless your clinician tells you to do so, based on your blood count.  (For instance, they might suggest folate supplements to help with low red blood cell counts.)

If you’ve had GvHD of the skin, or if you’ve undergone Total Body Irradiation, your skin will be much more sensitised to ultraviolet rays from sunshine (I know there’s not much sun in the UK, but we do have a summer sometimes!), so your risk of developing a skin cancer is much higher than the general population. You can go out in the sun, but use a high-factor sun block – you shouldn’t tan and you definitely don’t want to get burnt, so cover up, wear loose clothing that covers your skin, and wear a hat and sunglasses.

If you’re thinking about trying complementary therapies, always check with your lead clinician first. People often believe that if something is natural or homeopathic then it’s harmless, but that isn’t necessarily the case; for example, St John’s Wort can interact with your medications and have a dangerous effect. So don’t use anything you haven’t been prescribed without checking with your lead doctor first.

How will I know if a health problem is actually GvHD?

John: My advice is this; if you’ve had a transplant and you notice anything unusual, assume that it’s related to your transplant until it’s proven otherwise. It’s always better to ask and get it checked out rather than sit on a small problem that develops into a larger one.

Sometimes people will go to the dentist or optician, and go through a really long process before finding out that the problem is GvHD. Delays in starting treatment can lead to problems further down the line. So if you develop a new symptom, especially between appointments, don’t wait for two or three weeks – call your transplant team or your specialist nurse. You can make a new appointment, or if you have one coming up soon and it’s appropriate to wait, your team will at least know what to look out for by the time you arrive.

How can I deal with the effects in the long-term?

John: The effects of GvHD can be life-changing and they can cause new problems – it’s a whole new disease to deal with, which is hard to get your head around. It can affect your relationships, and it can be a struggle when friends don’t understand why you’re not fine. They can’t see a scar, like they would if you had a heart transplant, and they often don’t understand the complexity of a stem cell transplant.

Speak to your team to see if there’s any help available at your hospital. There’ll probably be counselling or psychotherapy available to help you talk things through. You could also check what’s available through your GP – they may be able to help or guide you in the right direction for services in your area.

You can ask for counselling at any time after a transplant, and it can be good to speak to someone outside of your team so you can talk freely and not feel that you’re moaning or being ungrateful. We all understand how difficult this procedure is, and being able to talk to someone who has a little distance from your situation can be invaluable.

Some hospitals offer counselling for families. It can be good to take a friend or relative along with you. These are complicated conversations, so you might need support, or you might forget what was discussed or even what you wanted to talk about in the first place. Keep a diary and bring it with you. Or write lists! You could have a list of 20 things, but just highlight the three that are most important at the time and discuss these.

What studies are happening right now in the field of GvHD? Are the treatments changing?

John: ECP (extracorporeal photopheresis, or light therapy) is becoming more popular, and there’s new research happening in the UK and around the world which should make a big difference. Our clinical lead for support care services at The Christie is also researching the use of mouth washes, topical skin treatments and pessaries to use alongside steroids to help with skin, oral and vaginal GvHD.

There’s research being done in America right now where blood samples are checked for cell markers, which could help us predict who will develop GvHD – the results will be published later this year.

If we can predict GvHD, we could then develop a test for patients to undergo before their transplant, and after the transplant we’d keep an eye on the markers. As soon as they rose, we could start treating the problem early with steroids or other medications alongside ciclosporin.

That’s the dream – to be able to treat the GvHD before symptoms even appear! And it could be a reality in four or five years.

You might be able to take part in a clinical trial. Have a look at the Cancer Research UK website and discuss the idea with your transplant team to see if there are any trials you could join.


Find out more

We hope you found these answers useful.

For information on what GvHD is and what can cause it, see Part 1 of John’s Q & A, What does it mean to have GvHD?

For more information about GvHD and life after transplant, you can download our free publication ‘The Seven Steps: the next steps’

If you’re a partner or family member read our page about supporting someone through a transplant.

If you’d like to receive more content like this in the future please sign up to Before, During, After, Anthony Nolan’s quarterly enewsletter for patients and their families.

You might also be interested in our Q & A with Philip Alexander, an experienced counsellor and cognitive behavioural psychotherapist. Here Philip answers your questions about the emotional impact of a transplant.

DISCLAIMER: At Anthony Nolan we take great care to provide up-to-date and accurate facts about stem cell transplant. We hope the information here will help you to look after yourself. Each transplant centre will do things differently, so this blog is just a general guide and isn’t intended to replace advice from your doctor and transplant team. Please speak to your transplant team for more details about your own situation as they will be able to give you personalised, specific advice.




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