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Methylphenidate for the treatment of narcolepsy

What is narcolepsy?

Narcolepsy is a long-term condition which causes excessive sleepiness during the day and may disrupt your sleep at night. You can also have sleep attacks where you fall asleep at inappropriate times during the day without any warning.

What is methylphenidate?

Methylphenidate belongs to a group of medicines called stimulants. It can be used to treat some of the symptoms of narcolepsy. Methylphenidate works by stimulating your brain to increase alertness and reduce excessive sleepiness during the day. Although there is no cure for narcolepsy, methylphenidate can help to control your symptoms.

Methylphenidate is available in both a modified release and an immediate release preparation.

Modified release

Modified release means that the medicine is released slowly during the day, to give a longer effect. These brands have the letters ‘XL’ after the brand name, and they usually only need to be taken once a day.

Immediate release

With immediate release the medicine is released quicker and the effects don’t last as long. These usually need to be taken more than once a day.

Taking an unlicensed medicine

Taking methylphenidate for narcolepsy treatment is unlicensed. This means the manufacturer of the medicine has not specified that it can be used in this way. However there is evidence that it works to treat this particular condition.

How do I take the medicine?

When starting methylphenidate, your consultant will give you a small dose to begin with and then increase accordingly in response to your symptoms.

Information:

It is important to take your dose at the same time each day as this will help prevent you from missing any doses.

Taking 1 dose per day

If you are taking methylphenidate XL, take 1 a day and try to take it in the morning. Take it whole with water. Do not chew, divide or crush it. You can take the medicine with or without food, but taking it after food may help to minimise any stomach upsets.

Taking 1 or 2 doses per day

If you are taking methylphenidate immediate-release tablets take them with water. To begin with, you may be prescribed just 1 or 2 doses every day, but this may be increased up to 3 doses every day. You may have been prescribed these methylphenidate tablets in addition to your XL tablets as a boost during the day.

Your second dose should not be later than 2pm as this may affect your sleep and reduce your total sleep time.

If you are taking methylphenidate immediate-release tablets, you should not take them after 3pm as this may affect your sleep and reduce your total sleep time.

What should I do if I forget to take the medicine?

Don’t worry. Just remember to take the next dose when it is due.

Do not take 2 doses together to make up for the forgotten dose.

Are there any side effects?

Most medicines can cause unwanted side effects, although not everyone gets them. The following are examples of some of the side effects reported by patients taking methylphenidate. The unwanted effects often fade as your body adjusts to the new medicine, but speak with your GP or pharmacist if any of the following continue or become troublesome.

For further information on side effects, please see the manufacturer’s leaflet that comes with the medicine.

Side effect

What should I do if it happens?

Very common (more than 10 percent)
Headache Drink plenty of water and take your usual painkiller, for example, paracetamol.

If the headache continues, speak with your GP.

Feeling or being sick

Tummy (abdominal) pain

Indigestion

Stick to simple meals – avoid rich or spicy foods. Taking methylphenidate after meals may help.
Feeling sleepy, dizzy, or tired If this happens, do not drive or use tools and machinery.
Diarrhoea Drink plenty of water. This will help to replace lost fluids.
Cough and cold-like symptoms

Loss of appetite, weight or hair

Sleeping problems

Dry mouth

Itchy rash

High temperature (fever)

Muscle pain

Unusual body movements or tics

If any of these become troublesome, speak with your doctor.
Information:

If you experience any of the following symptoms, stop taking methylphenidate and contact your doctor for advice as soon as possible:

  • any changes to your mood, behaviour, or thinking
  • chest pain, fast heartbeat, or unexplained breathlessness
  • any suicidal thoughts, or thoughts about harming yourself

Can I take methylphenidate with other medicines?

Methylphenidate may interact with some medicines. It is important to let us know about any medicines that you are currently taking, so that we can check methylphenidate is suitable for you.

If you are buying any medicines over the counter from a pharmacy, always mention that you have been prescribed methylphenidate. It is safe to take paracetamol and ibuprofen with this medicine.

Seek advice when buying herbal or homeopathic remedies.

How will my treatment be reviewed?

Your treatment will be reviewed on an ongoing basis in the Narcolepsy Clinic and the dose adjusted in response to your symptoms. Your consultant will want to check to make sure that the treatment is helping. You may need to have your blood pressure and heart rate checked regularly.

How do I get a repeat prescription?

Your GP will give you a repeat prescription for methylphenidate. Please make sure you request your repeat prescription early to prevent you running out or risk missing any doses of your medication.

If your GP won’t supply your methylphenidate, your consultant will provide repeat prescriptions, which will be sent in the post.

It can also be dispensed by the Rowland’s pharmacy at Sheffield Children’s Hospital outpatients 0114 305 3367.

Is there anything else I need to know?

Drinking alcohol

❌ Do not drink alcohol while on methylphenidate. Alcohol will increase the risk of side effects such as mood changes, confusion, sleep disturbances, increased drowsiness, so it is not recommended.

Stopping methylphenidate

Taking methylphenidate can lead to your body becoming dependent on it, so you should not stop taking methylphenidate unless your consultant tells you to do so. Stopping abruptly may cause side effects such as extreme fatigue. It is recommended that your dose should be reduced gradually if stopping treatment. This will be discussed with you before you start treatment.

Operations

If you are due to have an operation or dental treatment, it is important that you tell your consultant, GP or dentist who can advise you further.

Driving

If you are old enough to drive, you must let the Driver and Vehicle Licensing Authority (DVLA) know if you are diagnosed with narcolepsy.

You may be allowed to drive again when your symptoms are well controlled with medication, but you will need to have regular reviews. Your consultant will advise you about this.

If you are a driver, please be aware that methylphenidate may affect your reactions and ability to drive. It is an offence to drive while your reactions are impaired. Even if your driving ability is not impaired, if you drive, you should carry some evidence with you which shows that the medicine has been prescribed for you. A repeat prescription form or the patient information leaflet from the packet is generally enough.

Pregnancy and breastfeeding

We do not recommend taking methylphenidate if you are pregnant or breastfeeding. You should let your consultant know if you are planning a pregnancy so that a management plan can be agreed. If you discover that you are pregnant, please contact your consultant for advice as soon as possible.

Sleep routine

Taking methylphenidate is not a replacement for a good sleep routine. It is still important to aim to get around 9 to 11 hours of sleep at night, depending on your age. Try to go to bed when tired and get up at about the same time each day.

Methylphenidate is a controlled drug. It should be stored safely and kept out of reach of children. If anyone other than you takes this medicine, you, they, or their parent or carer should contact NHS 111 for advice. If they are unwell, they should call for an ambulance.

Expiry

Do not use the medicine after the expiry date.

The expiry date is printed on the container. Any that have gone out of date should be returned to your local pharmacy to be properly disposed of.

Contact us

Medicines Helpline

If you have any questions or concerns about your medicines, please speak to the staff caring for you or call our pharmacy helpline.

Narcolepsy team secretaries

0114 271 7400 between 9am to 5pm, Monday to Friday.

Rowland’s Outpatient pharmacy

0114 305 3367 between 9am to 5pm, Monday to Friday.

Your comments and concerns

For advice, support or to raise a concern, contact our Patient Advice and Liaison Service (PALS) on 0114 271 7594 or email scn-tr.pals@nhs.net.
To make a complaint, contact the complaints department on 0114 271 7194.

Other resources

Narcolepsy UK
You might find this charity’s website useful for connecting with patients who suffer from the same condition as you, but any information found should not alter your current treatment. You should discuss any new advice with the doctor caring for your condition.

NHS 111
Offers medical help and advice from fully trained advisers supported by experienced nurses and paramedics. Available over the phone 24 hours a day on 111.

NHS.uk
Provides online information and guidance on all aspects of health and healthcare, to help you make choices about your health.

Information:

Reproduced with the kind permission of Guy’s and St Thomas’ NHS Foundation Trust.

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Disclaimer

Please note: this is a generic information sheet relating to care at Sheffield Children’s NHS FT. These details may not reflect treatment at other hospitals. This information is not intended as a substitute for professional medical care. Always follow your healthcare professionals’ instructions. If this resource relates to medicines, please read it alongside the medicine manufacturer’s patient information leaflet. If this information has been translated into another language from English, efforts have been made to maintain accuracy, but there may still be some translation errors. If you are unsure about any of the guidance in this resource or have specific questions about how it relates to your child, always ask your healthcare professional for further advice.

Resource number: SLP33

Resource Type: Article

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