Your treatment will depend on how bad your chronic graft versus host disease (GVHD) is and which part or parts of your body are affected.
General treatments for chronic GVHD
Treatment for chronic GVHD usually includes steroids. You might 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 other treatments to damp down your immune system. Some of these treatments depend on which part of your body is affected.
- mycophenolate mofetil (MMF)
- a special type of light therapy called extracorporeal photophoreses (ECP)
Treating chronic skin GVHD
The treatment for chronic GVHD of the skin includes keeping your skin clean and moisturising regularly. You should use unperfumed soaps and moisturising creams.
Your doctor will prescribe steroid creams or a cream called tacrolimus if the skin problems are just in small areas. 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 might need help from a partner or carer to manage your skin properly.
More severe skin GVHD is can be treated with a type of light therapy called ECP. Newer treatments being tried include halofuginone, etanercept and hydroxychloroquine.
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 instead of rubbing it
- protect your skin from the sun by covering up, and using at least a factor 15 sunscreen
- use lots of moisturising creams to relieve itchy, dry skin - try putting on lots of cream on at night and wear old nightclothes and socks
Treating chronic gut GVHD
Chronic GVHD might affect your gut anywhere from your mouth to your bowel. Again it can last for a long time, so you might 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. Artificial saliva may help to combat dryness.
Having diarrhoea might make it hard for you to drink enough fluids so you might need to have a drip. Your doctor might suggest feeding you through a tube if you you can't eat for whatever reason. 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. Your doctor may give you medicines to help control the diarrhoea.
Your nurse will give you anti sickness drugs if you feel sick. You might be referred to a specialist (a gastroenterologist) if your sickness doesn’t improve.
Treating chronic lung GVHD
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. You might need oxygen therapy if your symptoms are bad.
Your doctor may refer you to a specialist in lung diseases.
Your doctor may use combinations of treatments to damp down your immune system, such as mycophenolate mofetil (MMF), imatinib and perhaps extracorporeal photopheresis (ECP).
Treating chronic eye GVHD
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 using cyclosporin A ointment in the eye can help. Other treatments include tacrolimus capsules or ointment.
You might need to see a specialist eye doctor (ophthalmologist). They might be able to arrange for you to have eyedrops made from the clear part of your own blood if artificial tears do not help. These are called autologous serum eyedrops and are produced by the National Blood and Transplant Service.
Treating chronic vaginal GVHD
The lining of the vagina may become inflamed or narrowed. This can make it uncomfortable to have sex.
Treatment with steroid creams into the vagina can help to stop it getting worse and can clear it for some women.
The risk of infections
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 although most vaccines these days aren’t live. But check with your doctor if you are unsure. One year after stem cell transplant treatment your doctor may advise you to have the flu vaccine to help protect you.