Treatment for chronic GVHD
This page tells you about the treatment of chronic graft versus host disease (GVHD). There is information below about
Your treatment will depend on the degree of your GVHD, and which part or parts of your body are involved. Treatment for chronic GVHD usually includes steroids. You may also have ciclosporin (also called Deximune, Neoral or Sandimmum) to reduce your immune response.
If these drugs do not control the GVHD your doctor may suggest treatment with azathioprine, mycophenolate, high dose steroids, tacrolimus capsules, thalidomide or extracorporeal photophoreses (ECP).
Your treatment will include specific treatments for particular parts of the body that are affected by GVHD. These are outlined below. The next page in this section gives information about the drugs used to treat GVHD.
The treatment for chronic GVHD of the skin includes keeping your skin clean using unperfumed soaps and moisturising creams.
If the skin problems are localised your doctor will prescribe steroid creams or a cream called tacrolimus. Your doctor may refer you to another doctor who specialises in skin problems (a dermatologist). Because chronic GVHD can last for many months, sometimes years, you will need to carry on with the treatments for a long time. As with other chronic skin conditions this can take up a lot of time. You may need help from a partner or carer to manage your skin properly.
If the skin GVHD is more severe your doctor may recommend PUVA, clofazimine or ECP. There is information about these treatments on the page about drug treatments for GVHD. Newer treatments being tried include halofuginone, daclizumab, etanercept, hydroxychloroquine and etretinate.
To help yourself with symptoms
- Wear cotton clothes
- Try not to get too hot or too cold
- When you are washing don’t have the water too hot
- Let your skin dry in the air or gently pat it dry – don’t rub it
- Protect your skin from the sun with at least a factor 15 sunscreen
- Use lots of moisturising creams to relieve itchy, dry skin – it can help to put lots of cream on at night and wear old nightclothes and socks
Chronic GVHD might affect your gut anywhere from your mouth to your bowel. Again it can last for a long time, so you may need to carry on with treatments long term.
You will need to clean your mouth regularly, especially if it is dry and sore. Your doctors and nurses will give you mouthwashes, and other medicines if your mouth gets infected. If your mouth is very painful there are mouthwashes that can help. Artificial saliva may help to combat dryness. There is more information in the section about mouth problems.
If you have diarrhoea and find it difficult to drink enough fluids, you may need to have a drip. If you can't eat for whatever reason, your doctor may suggest feeding you through a tube. The tube will be either through your nose into your stomach, or directly into your bloodstream through a central line, PICC line or portacath.
Diarrhoea can make the skin get sore and break down around your anus. You will need to wash the area regularly to keep it clean. You may also need a barrier cream to stop the skin breaking down. There is more information on coping in the section about diarrhoea.
If you feel sick your nurse will give you anti sickness drugs. If your sickness doesn’t improve your doctor may refer you to a bowel specialist (a gastroenterologist). There is more information about coping in the section on sickness.
Chronic GVHD can cause inflammation of the small air tubes in the lungs. This can cause shortness of breath, wheezing and a persistent cough, but it may only be a problem if you have a chest infection. You will probably need to take steroids long term, and antibiotics to stop you getting infections. Your doctor may refer you to a specialist in lung diseases.
If your symptoms are bad, you may need oxygen therapy. Your doctor may use combinations of treatments to damp down your immune system, such as azathioprine, mycophenolate mofetil (MMF) and perhaps extracorporeal photopheresis (ECP). There is more information about these treatments.
Chronic GVHD of the eye can make your eyes sore and dry. You can have artificial tears and steroid eyedrops to help keep your eyes moist. These will help to protect your cornea from getting scratched. Sometimes cyclosporin A ointment into the eye can help. Other treatments include tacrolimus capsules or ointment.
You may need to see a specialist eye doctor (ophthalmologist). If artificial tears do not help your ophthalmologist may be able to arrange for you to have eyedrops made from the clear part of your own blood. These are called autologous serum eyedrops and are produced by the National Blood and Transplant Service.
The lining of the vagina may become inflamed or narrowed. This can make it uncomfortable to have sex. If it occurs treatment with steroid creams into the vagina can help to stop it getting worse and can clear it for some people.
Your treatment for chronic GVHD will make you more at risk of picking up infections, so you will have antibiotics to help protect you. The risk can be serious, particularly if your immune system is very weak. Talk to your doctor or specialist nurse about what precautions you might need to take to avoid infection. In general you should avoid crowded places and people with infections.
You must never have live vaccinations – most vaccines these days aren’t live, but if in doubt ask your doctor. One year after stem cell transplant treatment you may be advised to have the flu vaccine to help protect you.
The length of time chronic GVHD lasts varies. For many people it gradually improves over a few months, but for some it can last longer. The average length of time to have chronic GVHD is between 1 and 3 years.
Chronic GVHD can be very difficult to cope with, especially when you have been through such a lot of treatment. You may have been free of symptoms before your transplant. So dealing with long term, uncomfortable symptoms after your transplant can be hard to accept.
It may be difficult to go back to work and get back to some sort of normal life again. This can sometimes mean that you have money worries on top of everything else. All these feelings and worries can make you feel low or depressed.
Chronic skin GVHD, steroid treatment, eye problems and weight loss can all affect how you look. They may also affect how you think other people see you. This may affect your relationships, particularly sexual relationships. If you have a partner it may help to tell them how you’re feeling about yourself, and what your worries are.
It can help to share your feelings with your family, close friends, or the doctors and nurses caring for you. Some people find that counselling helps them to deal with their situation. You can share experiences with people who have also been through cancer treatment on our online forum – Cancer Chat.
You can find information about counselling, financial support and sex and cancer in the coping with cancer section. And there is information about coping with your emotions in the section about coping physically with cancer.
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