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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.
Wakix is a brand name of pitolisant. It belongs to a new group of medicines which regulate certain chemicals in the brain to promote wakefulness. It works is by stimulating the brain to improve wakefulness and daytime alertness, while also helping to improve cataplexy attacks.
Pitolisant should be taken once a day, in the morning, for the treatment of narcolepsy. It can be taken with or after food. It should be swallowed whole with a glass of water. It is important to take pitolisant as your consultant has prescribed.
Do not stop taking suddenly unless told otherwise.
Don’t worry. Just take the dose as soon as you remember, but do not take after 2pm as this may affect your sleep and reduce your total sleep time.
Do not take 2 doses together to make up for the forgotten dose.
Most medicines can cause unwanted side effects, although not everyone gets them. The following are examples of some of the common side effects reported by patients taking pitolisant. The unwanted effects often fade as your body adjusts to the new medicine, but speak with your doctor 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. If any of the side effects persist or become a problem, contact your GP, consultant or pharmacist.
Side effect |
What should I do if it happens? |
Common (between 1 percent and 10 percent) | |
Sleep disorders – insomnia, fatigue | Speak with your consultant if this continues and is troublesome as your dose may need to be reduced. |
Headache | Drink plenty of water and take your usual painkiller, for example, paracetamol. If headache persists, discuss with your consultant as your dose may need to be reduced. |
Feeling or being sick
Indigestion |
Stick to simple meals. Avoid rich or spicy foods.
If symptoms of indigestion and acid reflux persist, a tablet can be given to stop acid being produced in your stomach. |
Dizziness, vertigo | If this happens, do not drive and do not use tools or machinery. |
Tremors | Speak to your doctor if this continues or becomes troublesome. |
If you experience any of the following symptoms, stop taking pitolisant and contact your doctor for advice straight away.
Pitolisant 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 pitolisant is suitable for you.
If you are buying any medicines over the counter from a pharmacy, always mention that you have been prescribed pitolisant. It is safe to take paracetamol with this medicine but ask for advice before buying any anti-inflammatory painkillers, such as ibuprofen or aspirin.
Seek advice when purchasing herbal or homeopathic remedies.
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 ensure that the treatment is helping. You may need to have your blood pressure and heart rate checked regularly.
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.
Pitolisant can reduce the effectiveness of all hormonal contraceptives. Other forms of effective contraception should be used while taking pitolisant.
You should not take pitolisant if you are pregnant. You may need to have a test to double check you are not pregnant before starting pitolisant.
If you are sexually active, you should use effective contraception during treatment and for 2 months after it is stopped. If you are considering becoming pregnant or you discover that you are pregnant, you should contact your consultant as soon as possible so that a management plan can be agreed.
Pitolisant should not be used if you are breastfeeding.
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 pitolisant 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.
If you are due to have an operation or dental treatment, it is important that you tell your dentist, consultant or GP who can advise you further.
Taking pitolisant 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 you’re tired and get up at about the same time each day.
Pitolisant 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 then they should call for an ambulance.
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.
If you have any questions or concerns about your medicines, please speak to the staff caring for you or call our pharmacy helpline.
0114 271 7400 between 9am to 5pm, Monday to Friday.
0114 305 3367 between 9am to 5pm, Monday to Friday.
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.
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.
Reproduced with the kind permission of Guy’s and St Thomas’ NHS Foundation Trust.
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: SLP32
Resource Type: Article
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