Myelodysplastic syndromes (MDS) treatment and side effects

All people with MDS will need supportive care at some stage, either alone or to support other treatments being given. Supportive care is not directed at the underlying disease but rather at controlling the symptoms and complications caused by the disease. The supportive care you need depends on which blood cells are affected and how low the blood levels fall. Most patients will need blood transfusions at some stage.

Supportive treatments include:

Growth factors are substances that stimulate the body to make blood cells. You may be given a growth factor to improve your blood count. They are given as injections under the skin. Erythropoietin (sometimes called ‘EPO’) is a growth factor that increases red blood cell numbers. G-CSF (or granulocyte-colony stimulating factor) increases white blood cell numbers.

Blood transfusions are an important part of your care. Most people with MDS are anaemic (have a low number of red blood cells), which can cause tiredness and shortness of breath. Blood transfusions will improve the symptoms of anaemia and your quality of life. The level of haemoglobin (Hb) in your full blood count will show your level of anaemia.

Some people need transfusions every few months, whilst others need one every couple of weeks. Usually, once you start having regular blood transfusions, the length of time between transfusions will gradually get shorter.

If you find that your symptoms of anaemia come back well before your next transfusion is due, ask your haematology team whether the interval between transfusions should be shorter, or the number of units of blood increased.

An improvement in your symptoms after having a transfusion may not be immediate, sometimes it can take a few days to start feeling the benefit.

If you have blood transfusions, you should not take additional iron tablets, unless your doctor prescribes them. This is because blood transfusions are rich in iron, and this can build up in the body.

Your iron levels will be monitored and if there is an excess in the body, treatment called iron chelation can be considered. Examples of iron chelation drugs are Desferal (deferoxamine) and Exjade. There is uncertainty about whether too much iron in the body is always harmful, and about the benefits of iron chelation. If you are worried about iron, you should not reduce your number of blood transfusions, as these are important for keeping you well. Speak to your healthcare team.

About half of people with MDS have a reduced platelet count at diagnosis (this is called thrombocytopenia). Platelets are blood cells that help the blood to clot and stop bleeding. If you have a low platelet count, you should usually avoid blood-thinning agents and non-steroidal anti-inflammatory drugs (NSAIDs), unless your doctor recommends them. You can have a platelet transfusion, but because platelets only live about four days, they are not routinely given, even when the platelet count is very low. If you have an infection, are on blood thinners or have suffered from bleeding, you might benefit from platelet transfusions.

People with MDS have a higher risk of developing infections. Antibiotics are not usually given to prevent infections, as they cause side effects and may cause the bacteria to become resistant, but if you do get an infection, this should be treated quickly with antibiotics. You may need to go into hospital so that antibiotics can be given through a vein (intravenously).

Ask your healthcare team if there’s a phone number you should call if you start developing a fever at home.