Ruxolitinib (Jakavi®)

You will be given ruxolitinib as tablets that you take at home.

During treatment, you usually see a:

• blood cancer doctor (haematologist)
• cancer nurse or specialist nurse
• specialist pharmacist. 

This is who we mean when we mention doctor, nurse or pharmacist in this information.

You will have regular blood samples taken throughout your treatment. These allow your doctor to check: 

• the levels of different blood cells (blood count) in your body
• how your liver and kidneys are working
• how well the treatment is working.

The nurse or pharmacist will give you the ruxolitinib tablets to take home. Always take them exactly as explained. This is important to make sure they work as well as possible for you.

Your nurse or pharmacist may also give you other drugs to take home. Take all your drugs and medicines exactly as they have been explained to you.

Your doctor may need to change the dose of ruxolitinib throughout your treatment. This depends on the results of your blood tests.

You will usually continue taking ruxolitinib for as long as it is working well for you and any side effects can be managed. It is important that you do not stop taking it without talking to your doctor first. Stopping the drug suddenly may make you feel unwell. Doctors usually reduce your dose before stopping it completely.

You usually take ruxolitinib tablets 2 times a day. Take them at the same time each day. Take the tablets with or without food. Swallow the tablets whole with a glass of water. Speak to your doctor or pharmacist if you find this difficult. Do not chew, open or crush your tablets.

If you forget to take your ruxolitinib, do not take a double dose. Keep to your regular schedule and take your next dose at the right time.

Other things to remember about your tablets:

• Keep the tablets in their original package, at room temperature, and away from heat and direct sunlight.
• Keep the tablets safe and out of sight and reach of children.
• If you are sick just after taking the tablets, contact the hospital. Do not take another dose.
• If your treatment is stopped return any unused tablets to the pharmacist.

This treatment can reduce the number of white blood cells in your blood. These cells fight infection. If your white blood cell count is low, you may be more likely to get an infection. A low white blood cell count is called neutropenia.

An infection can be very serious when the number of white blood cells is low. It is important to get any infection treated as soon as possible. If you have any of the following symptoms, contact the hospital straight away on the 24-hour number:

• a temperature above 37.5°C 
• a temperature below 36°C
• you feel unwell, even with a normal temperature
• you have symptoms of an infection.

Symptoms of an infection include:

• feeling shivery and shaking
• a sore throat
• a cough
• breathlessness
• diarrhoea
• needing to pass urine (pee) often, or discomfort when you pass urine.

It is important to follow any specific advice your cancer treatment team gives you.

You will have regular blood tests during treatment. If your white blood cell count is low, your doctor may stop your treatment for a short time, until your cell count increases. Sometimes they will reduce the dose of your treatment.

Some people can get shingles (herpes zoster) while taking ruxolitinib. This is an infection of a nerve and the skin around it. It is caused by the same virus that causes chickenpox.

Tell your doctor straight away if you develop any of the following on your skin:

• a burning feeling
• tingling
• numbness
• itchiness
• a rash with blisters.

This treatment can reduce the number of platelets in your blood. Platelets are cells that help the blood to clot. Tell your doctor if you have any bruising or bleeding that you cannot explain. This includes:

• nosebleeds
• bleeding gums
• tiny red or purple spots on the skin that may look like a rash.

Some people may need a drip to give them extra platelets. This is called a platelet transfusion.

Ruxolitinib can sometimes cause more serious bleeding. Contact the hospital straight away on the contact number you have been given if you:

• pass black or bloodstained stools (poos)
• vomit blood
• vomit and it looks like coffee grounds
• unexpected vaginal bleeding.

This treatment can reduce the number of red blood cells in your blood. Red blood cells carry oxygen around the body. If the number of red blood cells is low, this is called anaemia. You may feel:

• very low in energy
• breathless 
• dizzy and light-headed. 

If you have these symptoms, contact the hospital straight away on the 24-hour number. You may need treatment for anaemia. If you are very anaemic, you may need a drip to give you extra red blood cells. This is called a blood transfusion.

This treatment can cause dizziness. Tell your doctor or nurse if this happens. It is important that you do not drive or operate machinery if you feel dizzy.

This treatment can raise the level of cholesterol. This is a fatty substance in the blood. You may have a blood test to check the level of cholesterol. Your doctor may refer you to a dietitian for advice on diet, or prescribe medicines to control your cholesterol levels.

Some people pass more wind than usual when taking ruxolitinib. If you are affected, try to avoid food that gives you wind, for example:

• beans
• pickles
• fizzy drinks.

This treatment can cause constipation. Constipation means that you are not able to pass stools (poo) as often as you normally do. It can become difficult or painful. Here are some tips that may help:

• Drink at least 2 litres (3½ pints) of fluids each day.
• Eat high-fibre foods, such as fruit, vegetables and wholemeal bread.
• Do regular gentle exercise, like going for short walks.

If you have constipation, contact the hospital on the 24-hour number for advice. They can give you drugs called laxatives to help. 

If you have not been able to pass stools for over 2 days and are being sick, contact the 24-hour number straight away. 

Ruxolitinib can affect how your liver works. You will have regular blood tests during treatment to check how well your liver is working. Some people may be given a lower dose of ruxolitinib if they have or have had liver problems in the past.

Ruxolitinib may cause weight gain. Talk to your doctor if this happens.

This treatment may cause headaches. If you have headaches, tell your doctor, nurse or pharmacist. They can give you advice about painkillers that may help. Tell them if the headache does not get better, or gets worse.

Ruxolitinib can cause high blood pressure. Your blood pressure will be checked regularly. Tell your doctor if you already have high blood pressure and are on treatment to control it.

Cancer and some cancer treatments can increase the risk of a blood clot. Contact the hospital straight away on the 24-hour number if you have any of these symptoms during or after treatment:

• throbbing pain or swelling in a leg or arm
• reddening of the skin in the area – if you have black or brown skin, this can be harder to notice, but the skin might become darker
• suddenly feeling breathless or coughing.

Always call 999 if you have:

• chest pain
• difficulty breathing.

A blood clot is serious, but it can be treated with drugs called anticoagulants. These thin the blood. Your doctor, nurse or pharmacist can give you more information about preventing and treating blood clots.

Some medicines can affect how this treatment works or be harmful while you are having it. Always tell your cancer doctor, nurse or pharmacist about any drugs you are taking or planning to take, such as: 

• medicines you have been prescribed
• medicines you buy in a shop, pharmacy or online
• vitamins or supplements 
• herbal drugs and complementary or homeopathic therapies
• recreational drugs – for example, cannabis.

Ruxolitinib contains a sugar called lactose. You should not take it if you have a lactose intolerance. Ask your doctor, nurse or pharmacist if you need more information.

Doctors usually recommend that people with cancer have vaccinations for flu and for coronavirus (covid). These help reduce your risk of serious illness from these infections. Most people can have these vaccines, including people with weak immune systems.

If your immune system is weak, you should not have live vaccinations. Live vaccines can make you unwell because they contain a very weak version of the illness they will protect you against. Live vaccines include Zostavax^®, which is a shingles vaccine, and the yellow fever vaccine.

It is important to ask your doctor, nurse or pharmacist for advice about having vaccinations. They can explain what vaccines are right for you and when it is best to have them.

Tell your doctor if you have had Hepatitis B or C (a liver infection) in the past. This treatment can make it active again. Your doctor or nurse will talk to you about this and may test you for it.

Tell your doctor if you have had tuberculosis (TB) in the past. This treatment can make it active again. You should also tell your doctor if you been in close contact with someone who has TB.

Your doctor, nurse or pharmacist will advise you not to get pregnant or make someone pregnant while having this treatment and for some time afterwards. The drugs may harm a developing baby. It is important to use contraception to prevent pregnancy. Follow their advice about:

• what types of contraception to use 
• how long after treatment you should continue to use contraception. 

You are advised not to breastfeed while having this treatment, or for some time after treatment ends. This is because the drugs could be passed to the baby through breast milk. 

Your doctor, nurse or pharmacist can give you more information.

Some cancer drugs can affect whether you can get pregnant or make someone pregnant. If you are worried about this, it is important to talk with your doctor before you start treatment.

It is possible that small amounts of chemotherapy may be passed on through vaginal fluids or semen. If you have sex during this treatment, your cancer team will usually advise using condoms or a dental dam to protect your partner.

If you need medical treatment for any reason other than cancer, always tell the healthcare professional that you are having cancer treatment. Give them the contact details for your cancer doctor or cancer team so they can ask for advice.

If you have appointments with a dentist, always tell them you are having cancer treatment. Talk to your cancer team before you have any dental treatment.