You may hear the doctors and nurses referring to this as ‘PCP’ as it was previously called Pneumocystis Carinii pneumonia.
This infection is due to an organism (bug) that is probably present in most people’s lungs. Children who are receiving long term medicines which interfere with the body’s ability to cope with infections may be more at risk from this type of pneumonia. The symptoms of this infection are a raised temperature, rapid breathing and a dry cough.
How is pentamidine given?
Pentamidine is inhaled via a special nebuliser once a month. Air is blown through the nebuliser via a mouthpiece. If your child is unable to hold a mouthpiece, then a face mask can be used. The process will take about 20 minutes.
What are the side effects of pentamidine?
It is possible that your child may experience a strange taste while using the nebuliser. If this occurs, the nebuliser can be stopped temporarily so that your child can have a drink.
Cough, shortness of breath, and wheezing
Please inform your doctor or nurse if your child has a history of wheeziness, asthma or has recently had a cough, cold or high temperature. The doctor will assess your child and may prescribe a different inhaler or nebuliser to open your child’s breathing passages before the pentamidine is given, if it is felt necessary.
Nausea and vomiting
Please tell your doctor if your child’s sickness is not controlled or persists.
If this occurs while your child is receiving pentamidine, the nebuliser should be stopped and the doctor informed.
Please tell your doctor or nurse if your child develops a rash. They will advise you on the appropriate treatment to use.
Interactions with other medicines
Some medicines can react with pentamidine, altering how well it works. Always check with your doctor or pharmacist before giving your child any other medicine, including medicines on prescription from your family doctor (GP), medicines bought from a pharmacy (chemist) or any herbal or complementary medicines.
Important information you should know about pentamidine
Pentamidine is possibly harmful to the unborn child, although this has not been proved. The following guidelines for safety are advised:
- Your child will be given nebulised pentamidine in a separate room, away from other children and parents. If given at home, it should be carried out in a well ventilated room with windows open to outside air. It is not advisable for other people to remain in the room during nebulisation, especially if they are pregnant, breastfeeding or planning to become pregnant. You should discuss this with your doctor or nurse.
- If you choose to sit in the room with your child, then you must wear a face mask. Where possible, do not sit your child on your lap because you will breathe the pentamidine in from behind.
If at any point your child needs a rest, the air cylinder should be turned off so pentamidine is not blown into the room. Your doctor or nurse will show you how to do this before your child has the pentamidine.
Please read this information sheet from GOSH alongside the patient information leaflet (PIL) provided by the manufacturer. If you do not have a copy of the manufacturer’s patient information leaflet please talk to your pharmacist. A few products do not have a marketing authorisation (licence) as a medicine and therefore there is no PIL.
For children in particular, there may be conflicts of information between the manufacturer’s patient information leaflet (PIL) and guidance provided by GOSH and other healthcare providers. For example, some manufacturers may recommend, in the patient information leaflet, that a medicine is not given to children aged under 12 years. In most cases, this is because the manufacturer will recruit adults to clinical trials in the first instance and therefore the initial marketing authorisation (licence) only covers adults and older children.
For new medicines, the manufacturer then has to recruit children and newborns into trials (unless the medicine is not going to be used in children and newborns) and subsequently amend the PIL with the approved information. Older medicines may have been used effectively for many years in children without problems but the manufacturer has not been required to collect data and amend the licence. This does not mean that it is unsafe for children and young people to be prescribed such a medicine ‘off-licence/off-label’. However, if you are concerned about any conflicts of information, please discuss with your doctor, nurse or pharmacist.