Lenalidomide (Revlimid)

Lenalidomide is a cancer drug. It is also known by its brand name Revlimid.

It is a treatment for:

• myeloma
• myelodysplastic syndromes
• follicular lymphoma
• mantle cell lymphoma

You may also have it as part of clinical trials for other types of cancer.

For myeloma, you might have lenalidomide with:

• dexamethasone or
• melphalan and prednisolone or
• bortezomib and dexamethasone

For follicular lymphoma you might have lenalidomide with rituximab.

How does lenalidomide work?

Lenalidomide works by:

• stopping cancer cells developing
• stopping blood vessels growing in the cancer
• stimulating part of the immune system to attack the cancer cells

How do you have lenalidomide?

Lenalidomide comes as capsules that you take with a glass of water. You need to swallow them whole. Don’t break or chew them. You should take lenalidomide at the same time every day.

You can take the capsules with or without food.

Taking your capsules

You should take the right dose, not more or less.

Talk to your healthcare team before you stop taking a cancer drug or if you miss a dose.

How often do you have lenalidomide?

You take lenalidomide every day for 3 weeks and then have a break for 1 week. This is one cycle of treatment . You then start the next cycle. 

If you forget to take lenalidomide at your regular time but less than 12 hours have passed, take the capsule straight away. If more than 12 hours have passed do not take the capsule but just take your next capsule at the usual time the next day. 

Tests

You have blood tests before and during your treatment. They check your levels of blood cells and other substances in the blood. They also check how well your liver and kidneys are working.

What are the side effects of lenalidomide?

Side effects can vary from person to person. They also depend on what other treatments you're having. 

When to contact your team

Your doctor, nurse or pharmacist will go through the possible side effects. They will monitor you during treatment and check how you are at your appointments. Contact your advice line as soon as possible if:

• you have severe side effects 

• your side effects aren’t getting any better

• your side effects are getting worse

Early treatment can help manage side effects better. 

We haven't listed all the side effects here. Talk to your healthcare team if you have any new symptoms that you think might be a side effect of your treatment.

Remember it is very unlikely that you will have all of these side effects. But you might have some of them at the same time.

Common side effects

These side effects happen in more than 10 in 100 people (more than 10%). You might have one or more of them. They include:

Increased risk of getting an infection

Increased risk of getting an infection is due to a drop in white blood cells. Symptoms include a change in temperature, aching muscles, cough, headaches, feeling cold and shivery, pain or burning feeling when weeing, or generally feeling unwell. You might have other symptoms depending on where the infection is.

Infections can sometimes be life threatening. You should contact your advice line urgently if you think you have an infection. 

Breathlessness and looking pale

You might be breathless and look pale due to a drop in red blood cells. This is called anaemia.

Bruising, bleeding gums or nosebleeds

This is due to a drop in the number of platelets in your blood. These blood cells help the blood to clot when we cut ourselves. You may have nosebleeds or bleeding gums after brushing your teeth. Or you may have lots of tiny red spots or bruises on your arms or legs (known as petechiae).

Tiredness and weakness (fatigue)

You might feel very tired and as though you lack energy.

Various things can help you to reduce tiredness and cope with it, for example exercise. Some research has shown that taking gentle exercise can give you more energy. It is important to balance exercise with resting.

Diarrhoea or constipation

Tell your healthcare team if you have diarrhoea or constipation. They can give you medicine to help. 

Skin rash

Skin problems include a skin rash, dry skin and itching. This usually goes back to normal when your treatment finishes. Your healthcare team can tell you what products you can use on your skin to help.

Eyesight problems

You might have blurred vision or clouding of the lens (cataract). Contact to your team if you have any new problems with your vision.

Feeling shaky (tremors)

Your hands or other parts of the body could feel shaky. Talk to the team looking after you about this.

Numbness or tingling in fingers or toes

Numbness or tingling in fingers or toes is often temporary and can improve after you finish treatment. Tell your healthcare team if you're finding it difficult to walk or complete fiddly tasks such as doing up buttons. 

Headaches and dizziness

Let your doctor or nurse know if you have headaches. They can give you painkillers. Don’t drive or operate machinery if you feel dizzy.

Feeling or being sick

Feeling or being sick is usually well controlled with anti sickness medicines. It might help to avoid fatty or fried foods, eat small meals and snacks and take regular sips of water. Relaxation techniques might also help.

It is important to take anti sickness medicines as prescribed even if you don’t feel sick. It is easier to prevent sickness rather than treat it once it has started.

Changes in mineral levels in the blood

You may have changes in levels of minerals and salts in your blood, including low levels of sodium or high levels of uric acid (causing gout). You have regular blood tests during treatment to check this.

Kidney changes

To help prevent kidney damage, it is important to drink plenty of water. You might also have fluids into your vein before, during and after treatment. You have blood tests before your treatments to check how well your kidneys are working.

Fluid build up

You may have swelling of your hands and legs due to a build up of fluid (oedema). 

Taste changes

Taste changes may make you go off certain foods and drinks. You may also find that some foods taste different from usual or that you prefer to eat spicier foods. Your taste gradually returns to normal a few weeks after your treatment finishes.

Changes in blood sugar levels

You have regular blood and urine tests to check this. If you have diabetes you may need to check your blood sugar levels more often than usual. 

Mood changes and difficulty sleeping

Talk to your healthcare team if your mood is affected.

It can help to change a few things about how you try to sleep. Try to go to bed and get up at the same time each day and spend some time relaxing before you go to bed. Some light exercise each day may also help. 

Pain 

You may have painful bones and joints or muscle pain. Some people have tummy (abdominal pain). Talk to your healthcare team, they may be able to prescribe pain relief.

Flu-like symptoms

You may have headaches, muscle aches (myalgia), a high temperature and shivering. You should contact your advice line urgently if you have these symptoms.

Liver changes

You might have liver changes that are usually mild and unlikely to cause symptoms. They usually go back to normal when treatment finishes. You have regular blood tests to check for any changes in the way your liver is working.

Dry, sore mouth

Your mouth might get sore. You will have mouth washes to keep your mouth healthy. You can have painkillers to reduce the soreness. Take them half an hour before meals to make eating easier.

If you have a dry mouth it can help to drink plenty of fluids after treatment. An artificial saliva spray into your mouth might help. Ask you healthcare team about this.

Loss of appetite and weight loss

You might not feel like eating and may lose weight. Eating several small meals and snacks throughout the day can be easier to manage. You can talk to a dietitian if you are concerned about your appetite or weight loss. 

Low blood pressure

Tell your doctor or nurse if you feel lightheaded or dizzy. Your blood pressure might also drop when standing up (orthostatic hypotension). Take extra care when standing up quickly.

You have your blood pressure checked regularly.

Cough

You develop a cough when having lenalidomide.

Occasional side effects

These side effects happen in between 1 and 10 out of every 100 people (between 1 and 10%). You might have one or more of them. They include:

• heart problems such as heart failure or a heart attack
• blood clots that can be life threatening; signs are pain, redness and swelling where the clot is. Feeling breathless can be a sign of a blood clot in the lung. Contact your advice line or doctor straight away if you have any of these symptoms
• loss of appetite and weight loss
• low levels of thyroid hormones, causing tiredness for example
• changes to the voice or difficulty speaking
• hearing problems such as hearing loss or ringing in your ears (tinnitus)
• difficulty balancing
• itching of skin and sweating
• urine infections
• darkening of the skin
• increased risk of certain blood disorders
• difficulty getting an erection
• depression
• heartburn and indigestion
• feeling weak (lethargy)

Rare side effects

These side effects happen in fewer than 1 in 100 people (fewer than 1%). You might have one or more of them. They include:

• skin sensitivity to sunlight
• loss of interest in sex
• inflammation of your bowel – you might have diarrhoea, pain or cramping in your tummy, pass blood in your poo (stool), and lose weight
• non melanoma skin cancer
• bleeding in the brain
• severe kidney changes
• severe liver changes
• changes to the levels of chemicals in your blood due to the breakdown of tumour cells (tumour lysis syndrome) - you have regular blood tests to check for this
• severe allergic reaction that can cause a rash, shortness of breath, redness or swelling of the face and dizziness - some allergic reactions can be life threatening, alert your nurse or doctor if notice any of these symptoms

Coping with side effects

We have more information about side effects and tips on how to cope with them.

What else do you need to know?

Other medicines, foods and drink

Cancer drugs can interact with medicines, herbal products, and some food and drinks. We are unable to list all the possible interactions that may happen. An example is grapefruit or grapefruit juice which can increase the side effects of certain drugs.

Tell your healthcare team about any medicines you are taking. This includes vitamins, herbal supplements and over the counter remedies. Also let them know about any other medical conditions or allergies you may have.

Pregnancy and contraception

Lenalidomide can cause birth defects in children. So you must not become pregnant or father a child while taking this drug. Your doctor will talk to you about effective methods of contraception before you have the treatment. Some people worry about taking lenalidomide but it doesn’t cause physical defects in adults.

Because lenalidomide causes birth defects, your doctor will talk to you before you start treatment. They will make sure that you understand the risks of taking lenalidomide and agree to use contraception.

Breastfeeding

It is not known whether this drug comes through into the breast milk. Doctors usually advise that you don’t breastfeed during this treatment.

Treatment for other conditions

If you are having tests or treatment for anything else, always mention your cancer treatment. For example, if you are visiting your dentist.

Immunisations

Don’t have immunisations with live vaccines while you’re having treatment and for up to 12 months afterwards. The length of time depends on the treatment you are having. Ask your doctor or pharmacist how long you should avoid live vaccinations.

In the UK, live vaccines include rubella, mumps, measles, BCG, yellow fever and one of the shingles vaccines called Zostavax.

You can have:

• other vaccines, but they might not give you as much protection as usual
• the flu vaccine (as an injection)
• the coronavirus (COVID-19) vaccine - talk to your doctor or pharmacist about the best time to have it in relation to your cancer treatment

Members of your household who are aged 5 years or over are also able to have the COVID-19 vaccine. This is to help lower your risk of getting COVID-19 while having cancer treatment and until your immune system recovers from treatment.

Contact with others who have had immunisations - You can be in contact with other people who have had live vaccines as injections. Avoid close contact with people who have recently had live vaccines taken by mouth (oral vaccines) such as the oral typhoid vaccine. Sometimes people who have had the live shingles vaccine can get a shingles type rash. If this happens they should keep the area covered.

If your immune system is severely weakened, you should avoid contact with children who have had the flu vaccine as a nasal spray as this is a live vaccine. This is for 2 weeks following their vaccination.

Babies have the live rotavirus vaccine. The virus is in the baby’s poo for about 2 weeks and could make you ill if your immunity is low. Get someone else to change their nappies during this time if you can. If this isn't possible, wash your hands well after changing their nappy.

More information about this treatment

For further information about this treatment and possible side effects go to the electronic Medicines Compendium (eMC) website. You can find the patient information leaflet on this website.

You can report any side effect you have to the Medicines Health and Regulatory Authority (MHRA) as part of their Yellow Card Scheme.