Your treatment depends on how bad your chronic GvHD is and which parts of your body are affected.
Assessing chronic GvHD
Your doctor assesses your GvHD. They look at the number of organs involved and how severe it is. Depending on this they give it one of the following grades:
General treatments for chronic GvHD
Treatment for chronic GvHD usually includes steroids. You might also have ciclosporin (which is known as Deximune, Neoral or Sandimmum) to reduce your immune response.
If these drugs don't control the GvHD, your doctor might 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 skin is the most common part of the body affected by chronic GvHD. The treatment includes keeping your skin clean and moisturising regularly. You should use unperfumed soaps and moisturising creams.
Your doctor prescribes steroid creams or a cream called tacrolimus if the skin problems are just in small areas. You may have anti histamines to help with itching. Your doctor might refer you to another doctor who specialises in skin problems (a dermatologist).
Chronic GvHD can last for many months, sometimes years, so you 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 can be treated with a type of light therapy called ECP. Doctors are looking at newer treatments that include halofuginone, etanercept and hydroxychloroquine.
There are some things you can do to help keep your skin more comfortable. These include:
- use lots of moisturising creams to relieve itchy, dry skin - try putting on lots of cream at night and wear old nightclothes and socks
- 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
- drink plenty of water
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 need to clean your mouth regularly, especially if it is dry and sore. And you need to have regular check ups with a dentist. Your doctors and nurses give you mouthwashes, and other medicines if your mouth gets infected. Artificial saliva may help with dryness.
Having diarrhoea can make you dehydrated so you might need to have a drip with fluids. Your doctor might suggest feeding you through a tube if you can't eat for whatever reason. The tube enters 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 sore and break down around your anus. You 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).
Breathlessness can be distressing. Some people find that learning breathing techniques can help you relax.
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 the front of your eye (the 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. You might need to see a specialist doctor (gynaecologist).
Treatment with steroid creams into the vagina can help to stop it getting worse and can clear it for some women.
Treating chronic GvHD of the muscles and joints
Chronic GvHD can affect the skin, joints and connective tissue. This can cause muscle loss, weakness, problems straightening your arms and leg and swelling. If it’s severe it can affect everyday life such as doing up buttons. You might benefit from an exercise rehabilitation programme. You could ask your healthcare team about this. This should aim to improve strength and mobility of joints and muscles. A family member or carer might be able to help you do the exercises as they need to be done regularly. Massage can help to keep the joints and muscles flexible.
The team will refer you to a physiotherapist if appropriate.
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. A year after having a stem cell transplant your doctor may advise you to have the flu vaccine to help protect you.