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Steroids for chronic lymphocytic leukaemia (CLL)

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This page is about steroid therapy for chronic lymphocytic leukaemia. There is information about

 

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Steroids for chronic lymphocytic leukaemia (CLL)

Steroids are substances made naturally in the body but they can also be made artificially. Steroids can be used to control sickness or as part of some CLL treatments. If you have CLL, you may have steroids with chemotherapy, or on their own.

Your doctor may suggest high dose steroid treatment if your leukaemia has stopped responding to chemotherapy. You can have the steroids as tablets or through a drip. You normally have treatment for 5 days every month. The number of treatments you have depends on how well it controls your CLL. Steroids increase your risk of infection, so your doctor may ask you to take antibiotics or antiviral drugs at the same time.

Side effects

There are several possible side effects of steroids. But the side effects vary a great deal depending on how long you are taking steroids for and on the dose. Common side effects may include having more of an appetite, having more energy, difficulty sleeping and indigestion.

Remember – you should never stop taking steroids, or change your dose without instructions to do so from your doctor.

 

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What steroids are

Steroids are substances made naturally in the body but they can also be made artificially. Steroids can be used to control sickness or as part of some CLL treatments.

 

Steroids for chemotherapy sickness

Steroids can be used before and during chemotherapy treatments to control sickness. The dose is usually quite low. If you have steroids for sickness, you only take them for a few days or a week at a time. But you take them each time you have a cycle of chemotherapy. So you may be on and off steroids for quite a while.

Steroids can be tablets or injections. For chemotherapy into the bloodstream, it is most common to have a steroid injection at the same time as your chemotherapy and then take tablets for a few days at home.

 

Steroids as treatment for CLL

You may have steroids as part of your treatment for CLL. They are part of CHOP chemotherapy. You may have them with chemotherapy, or on their own. Steroids can be useful because they can help to control the leukaemic cells. But they don't stop your bone marrow from making red blood cells and platelets. So, if you need treatment, but have anaemia or low platelets, your doctor may recommend them 

Your doctor may suggest high dose steroid treatment if your leukaemia has stopped responding to chemotherapy (refractory CLL). Doctors often refer to this high dose steroid treatment as HDMP (high dose methylprednisolone). Doctors most often suggest this treatment if you have uncomfortable bulky lymph nodes. Or they may suggest it if tests on your leukaemia cells show that they have particular gene mutations. Most people in these situations find that steroid treatment can control the CLL for some months – more than a year in some people. When your leukaemia starts to develop again, you may get another response if you have steroids again.

You may have the steroids through a drip or as tablets. Normally, you have treatment for 5 days every month. The number of treatments you have depends on how well it controls your leukaemia. Steroids increase your risk of infection, so your doctor may ask you to take antibiotics or antiviral drugs at the same time. Steroids can also damage the stomach lining. So your doctor may not be able to give you this treatment if you have had a stomach or duodenal ulcer in the past.

Remember – you should never stop taking steroids, or change your dose without instructions to do so from your doctor. It can be very dangerous to stop taking them suddenly and you need your doctor's advice on how to gradually cut down your dose.

 

Steroid side effects

Steroids can cause various side effects, but they vary a great deal depending on how long you are taking them for and on the dose. Side effects may include

  • Having more of an appetite
  • Having more energy
  • Difficulty sleeping
  • Indigestion

When you have been taking steroids for some time you may notice some swelling in your hands, feet or face. You may also put on weight. Steroids cause water retention. It is the extra fluid in your body that causes these symptoms. This is one of the most common side effects.

Steroids can irritate the lining of the stomach. You should not take them on a completely empty stomach. Try to have at least a slice of bread, or a glass of milk, with them. It is best to take them with a meal. But when you are having chemotherapy, you can’t always manage food. So, your doctor may give you another tablet to stop the steroids damaging your stomach. The tablets may be ranitidine (Zantac) or cimetidine (Tagomet). You must tell your doctor or specialist nurse if you get stomach pains after taking steroids.

Your doctor will be looking out for other side effects of your steroids. These are

  • High blood pressure
  • Increased risk of picking up infections.
  • Raised blood sugar level and sugar in your urine.

It is best to avoid people with colds and flu while you are taking steroids and while you are on chemotherapy. This is because your resistance to infection is lowered. It is not always easy to avoid people who have infections. But you can ask your friends and family to stay away if they feel ill or know they have any sort of infection. If you are having high dose steroid therapy, your doctor may give you antibiotics or antiviral drugs to take to help prevent infection.

You may develop steroid induced diabetes. This doesn’t mean you are a diabetic. Steroids can give you a temporary high blood sugar level. You may be asked to test your urine for sugar. Or you may have to take samples to the hospital to be tested. You may need to have blood glucose lowering treatment. But your sugar levels usually go back to normal shortly after you stop taking steroids. 

These side effects are unlikely to happen unless you have been taking steroids for some time. And they are temporary. They will go away when you stop taking the steroids. 

It is important for any doctor treating you to know you are taking steroids. So, in case of an emergency you will be given a steroid card to carry to say that you are having steroid treatment. Your doctor will ask you to carry the card with you at all times.

We have more detailed information about steroids.

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Updated: 10 March 2015