Treatment for chronic GvHD

Graft versus host disease (GvHD) is a possible complication after a bone marrow or stem cell transplant from another person. Generally, acute GvHD starts within 100 days of your transplant. Treatment is different for acute GvHD.

Find out about treatment for acute GvHD

Grading chronic GvHD

Your doctor grades your GvHD. Knowing the grade helps doctors plan treatment. To grade chronic 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:  

• mild

• moderate

• severe

What are the possible treatments for chronic GvHD?

Your treatment depends on:

• how severe your chronic GvHD is

• which parts of your body are affected

Treatment for chronic GvHD usually includes steroids. You might have the steroids alone or with a medicine called ciclosporin. These medicines dampen down your ​immune system​ so it doesn’t attack your body’s tissues. 

You usually have treatment by mouth, but sometimes you might need to have the medicines directly into a vein (intravenously).

Your doctor might suggest other treatments if these medicines don’t control the GvHD. Some of these treatments depend on which part of your body is affected.

The treatments might include:

• types of ​targeted cancer drugs​ such as sirolimus, imatinib, or ruxolitinib

• ​monoclonal antibodies​ such as rituximab

• medicines that supress your immune system such as that mycophenolate mofetil (MMF) or tacrolimus

• ​chemotherapy​ such as methotrexate

• a light treatment such as ​extracorporeal photopheresis (ECP)​ or Psoralen ultraviolet light A (PUVA)

Find out about the drugs used for treating GvHD

Treating chronic skin GvHD

The skin is the most common part of the body affected by chronic GvHD. Treatment includes keeping your skin clean, using unperfumed soaps and moisturising it regularly.  

You may have steroid creams. Rarely you may have a cream called tacrolimus, if your skin problems are just in small areas. You may also have a medicine to help with itching. This is called an antihistamine. 

Your doctor might refer you to a skin specialist called a dermatologist. 

Chronic skin GvHD can last for many months, sometimes years. This means you may 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 another member of your household if you live with someone. This is so they can help you to manage your skin.

Some people who have severe skin GvHD may have a type of light therapy treatment. This is called extracorporeal photopheresis (ECP).

Let your healthcare team know if you notice any skin changes that aren’t normal for you.

What you can do to help yourself

There are some things you can do to help keep your skin more comfortable.  

• Use lots of moisturising creams to relieve itchy or 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.

• Don’t have the water too hot when you are washing.

• 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, staying in the shade and using sunscreen.

• Drink plenty of water.

Treating chronic GvHD of the digestive system

Chronic GvHD might affect your digestive system. The digestive system includes your:

• mouth

• food pipe (oesophagus)

• stomach

• large and small bowel (intestines)

• back passage (rectum)

This means anywhere from your mouth to your rectum can get affected. Chronic GvHD of the digestive system can last for a long time. So this means 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. You have mouthwashes and other medicines if your mouth gets infected.

Take regular sips of water to keep your mouth moist. Artificial saliva may help with dryness. Use a lip moisturiser to prevent your lips from getting too dry and cracking.

Find out more about mouth problems

Having ​diarrhoea​ can make you dehydrated so you might need to have fluids through a drip into your bloodstream (intravenously).

Your doctor might suggest special nutritional feeds through a tube if you can't eat. The tube enters your nose and goes into your stomach. This is called a nasogastric tube. Or you may have liquid food (​TPN​) directly into your bloodstream through a ​central line​.

Find out more about drip or tube feeding

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. You might have medicines to help control the diarrhoea. 

Read some tips about coping with diarrhoea

You have regular anti sickness medicines if you feel sick. You might be referred to a digestive system specialist doctor called a gastroenterologist if your sickness doesn’t improve. Or your healthcare team might ask the palliative care or enhanced supportive care team for advice to help control sickness.

Find out about coping with sickness

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 cough that doesn’t go away.

You usually need to take steroids long term and antibiotics to stop you getting infections. You might have a steroid inhaler. You also have a medicine that helps stop the narrowing and swelling of your breathing tubes. You might need oxygen therapy if your symptoms are bad.

Your doctor may refer you to a specialist in lung diseases for additional advice and care.

You might have a combination of treatments to dampen down your immune system, such as:

• mycophenolate mofetil (MMF)

• imatinib

Breathlessness can be distressing. Some people find that learning breathing techniques can help you relax.

Go to more information about breathing and relaxation techniques

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 ciclosporin ointment in the eye can help. Other treatments include tacrolimus capsules or ointment. 

You also might have eyedrops to prevent eye infections.

You might need to see a specialist eye doctor called an ophthalmologist. They might be able to arrange for you to have eyedrops made from the clear part of your own blood. This is usually if you have severe dryness of the eye and the other treatments are not helping. These are called autologous serum eyedrops and are produced by the National Blood and Transplant Service.

Treating chronic vaginal and vulval GvHD

The vagina is the elastic, muscular passage that leads from the neck of the womb (cervix) to the vulva. The vulva is on the outside of the body and forms the skin folds around the entrance to the vagina.

These are the most private parts of a woman's body, so it's normal to feel anxious and upset when you have GvHD of these areas.

The vulva is the most commonly affected area. Some women might have a mixture of both vulval and vaginal GvHD.

Symptoms can include:

• a dry vulvar or vagina

• inflammation and narrowing of the vagina

• a burning sensation

• your vagina or vulvar being very sensitive and sore to touch

• vaginal discharge or bleeding

• ulcers, this is usually in severe cases

GvHD of the vulvar or vagina can really impact and change your ​quality of life​. It can make sex or ​cervical screening​ uncomfortable, painful or difficult. It can also be uncomfortable, painful or difficult to do things like physical activities such as:

• walking

• exercising

• riding a bike

You might need to see a specialist doctor called a gynaecologist.

The usual first treatment is steroids. You might also have steroid creams into the vagina. This can help to stop the GvHD getting worse and can clear it up for some people.

Other treatments might include:

• ​hormone replacement therapy (HRT)​ due to the treatment causing the ​menopause​

• medicines to supress your ​immune system​

• lubricants and moisturisers for the vulva and vagina

• using dilators to gently stretch and open the vagina

Tips to help manage vaginal and vuval symptoms

• Wear cotton underwear.

• Don’t use perfumed soaps, lotions or moisturisers. Ask your healthcare team what moisturiser is best to use.

• Keep the skin in the area lubricated with specific moisturises as advised by your healthcare team to prevent dryness or chaffing.

• If your skin is sensitive, pat the area dry and do not rub.

• You can use water based lubricants to have sex, these can help lubricate the vagina and make it more comfortable.

Always tell your doctor or nurse of any changes to your genital areas so they can help prevent the area getting worse.

Treating chronic GvHD of the muscles and joints

Chronic GvHD can affect the muscles, joints and connective tissue. This can cause:

• muscle loss

• weakness

• problems straightening your arms and legs

• 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.

Your healthcare team will refer you to see a physiotherapist if they think you need their input.

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 try and reduce the risk. Infections can be serious, particularly if your immune system is very weak.

Talk to your doctor or specialist nurse about things you can do to try and avoid infection.

In general, you should avoid crowded places and people with infections.

You must not have ​live vaccinations. You can have vaccines that aren’t live.

Some people need to repeat the vaccinations they had as a child if you’ve had a stem cell transplant. This is because you lose your immunity to illnesses you have been vaccinated against in the past.

Your team will decide on the right time to have vaccines after your transplant. Talk to them if you have any questions.

Read about drugs used for treating GvHD