The symptoms depend on the type of graft versus host disease (GVHD) and which parts of your body it affects.
Symptoms of acute GVHD
Acute GVHD generally happens within the first 100 days after bone marrow or stem cell transplant from another person. Sometimes it can be hard to tell if the symptoms are caused by GVHD, or are other side effects of your transplant.
The symptoms of GVHD depend on which part of the body is affected.
This usually begins with a rash, often on the palms of your hands or soles of your feet, your ears, or on your shoulders. It can become widespread. The rash might be itchy and painful. If it is bad, your skin might blister and peel.
Your doctor will arrange for you to have regular blood tests, called liver function tests. These tests can pick up early changes in your liver before you get any symptoms.
Your skin and the whites of your eyes may look yellow if the GVHD carries on. This is called jaundice. It can also make your skin itchy. Your abdomen may become swollen and painful if your liver becomes enlarged.
GVHD of the digestive system often starts with diarrhoea. This can be green and watery, and may look bitty. It sometimes contains mucus and blood. You might have cramping abdominal pain.
You might have indigestion, feel sick and lose your appetite if GVHD affects your stomach.
Other general symptoms of acute GVHD can include:
- low red blood cells (anaemia)
- low platelets (thrombocytopenia)
- low resistance to infection
- raised temperature
Symptoms of chronic GVHD
Chronic GVHD may be mild or severe. Symptoms can be similar to those of acute GVHD. Chronic GVHD mainly affects your skin and digestive system, including the liver.
It can also involve other organs such as your eyes, lung, tendons or vagina. You might be more at risk of infections as it can also affects your immune system.
Chronic GVHD affects the body’s connective tissues. As these are everywhere in the body, it can be widespread. Symptoms vary from person to person, depending on the part of the body affected.
You may develop a rash. Or your skin might feel dry and tight, or itchy. It may look a darker colour. Your skin may thicken and feel bumpy.
Chronic GVHD can also affect your hair and nails. You may find that you are losing hair, and that it turns grey. Your nails might become hard and brittle.
You can have diarrhoea that goes on for more than a few days (chronic diarrhoea). Chronic GVHD can also affect your mouth and food pipe (oesophagus) and make it hard to swallow.
You may find that your mouth is sore and dry. This is because GVHD affects the glands that make your saliva. You may also be more likely to get fungal infections of the mouth (thrush) or cold sores. It's sometimes painful to swallow. Spicy and acidic foods may cause you pain or irritation.
GVHD can affect the lining of your stomach and bowel. So you may not be absorbing the nutrients you need from your food. You may not feel like eating, which can lead to weight loss. You might feel bloated and get stomach cramps.
Chronic GVHD can also cause damage and scarring of your liver (cirrhosis). This can stop your liver working properly.
GVHD can sometimes affect the glands that make tears so your eyes might become dry and painful. Sometimes your eyes feel like they’re burning, and it can be hard to tolerate bright light.
GVHD of the eyes is called ocular GVHD. It happens in 4 to 6 out of 10 people (40 to 60%) who have bone marrow or stem cell transplants from a donor.
You might be short of breath and wheeze when you breathe. You might also have a persistent cough, and be more at risk of chest infections.
The lining of the vagina may become inflamed or narrowed. This can make it uncomfortable to have sex.
Tendons connect muscle to bone. You may have difficulty straightening or bending your arms and legs if GVHD affects your tendons.
This is because the tendons can become inflamed and make your muscles shorten (contract).
Checking for symptoms
The doctors and nurses looking after you will keep a very close watch for any symptoms of GVHD. Once you are at home they will ask you to report any new symptoms.
They will also check you over each time you come to clinic. You will have some tests and treatment for GVHD if you need it.