Pentamidine to treat and prevent lung infection

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What is this information about?

This information is about pentamidine treatment. Pentamidine is a medicine used to prevent and treat a type of pneumonia (lung infection) called pneumocystis jirovecii. It explains:

• why you might need pentamidine treatment 
• how we give you your pentamidine treatment 
• what happens when you arrive for your treatment 
• what happens when you have your treatment 
• the side effects of pentamidine 
• what you should do before you have pentamidine if you are pregnant

Why have I been given this information?

You have been given this information because you have, or have had, pneumonia caused by the pneumocystis jirovecii bug (bacteria). You are more likely to get this infection if your immune system does not work very well (you have a suppressed immune system). 

Your doctor thinks that inhaled pentamidine (pentamidine that you take by breathing it in) is the best medicine for you to treat or prevent your pneumonia.

Why might inhaled pentamidine be the best treatment for me?

You might need inhaled pentamidine because:

• you have had side effects from other medicines, such as co-trimoxazole, used to treat your lung infection. This means that you can no longer use them.
• you have a low blood count that means inhaling pentamidine is the best way for you to take this medicine.

How will I take my inhaled pentamidine?

You will breathe in (inhale) your pentamidine from a device called a nebuliser. The nebuliser makes the medicine into a fine ‘mist’. It also helps to push it into your lungs (where it is needed) and coat them when you breathe in.

What happens when I arrive for the treatment?

You will have your treatment in hospital, in a special room at the Haematology ward or unit.  

When you arrive, we will ask you some questions about yourself and how you are. This is so that we can make sure pentamidine treatment is safe for you.

What happens during the treatment?

Each treatment takes around 20 to 30 minutes. You will usually have a treatment once every four weeks.

During each treatment:

1. We will give you a medicine called Ventolin which you breathe in from a nebuliser. The Ventolin helps to relax your airways which means you can breathe in more of the pentamidine. 
2. We will give you pentamidine, also through a nebuliser. 

Breathing in pentamidine can be harmful to people who do not need treatment or breath in too much of it. To prevent harm:

• there is a filter system in the room where you have your treatment. This removes all the medicine that you breathe back out into the air. The system will be running while you have your treatment and does make some noise 
• staff will not stay in the treatment room with you while you have your treatment. The nurse will be able to see you throughout your treatment. There is a call bell that you can use to call for help if you need it.

What side effects might I get from pentamidine treatment?

Like most medicines pentamidine can have side effects.  Everybody reacts in different ways to medicines but some of the more usual side effects of pentamidine include:

• chest pain, coughing or wheezing. The Ventolin that you will be given before your pentamidine helps to reduce these symptoms. 
• a decrease in appetite. This should not usually last very long. 
• a bitter or metallic taste in your mouth. This can be reduced by sucking on a boiled sweet after your treatment. 
• a sore throat that may last for a few hours 
• a rash 
• feeling light-headed, sick (nauseous) or tired (fatigued).

I am pregnant, chest feeding, think I may be pregnant or am planning to have a baby. What must I do? before I have pentamidine treatment?

Do ask your doctor, nurse or pharmacist for advice before you use pentamidine.

Can I drive or use machines after I have had my treatment?

Pentamidine has not been found to make you less able to drive or use machines safely.  

Because it is possible that you could have side effects such as feeling dizzy or becoming unconscious for a short time, please be cautious. Do not drive or use machines if you do not feel it is safe to do so.

Who can I contact for further information or support if I need it after I have read this information?

• Royal Sussex County Hospital, Brighton. 

Haematology Day Unit, Sussex Kidney Unit, Phone: 01273 696 955 ext: 67413 

Staffed Monday to Friday 8am to 7pm. 

• St. Richard’s Hospital, Chichester. 

Fernhurst Unit. Phone: 01243 788 122 ext: 35154 

Staffed Monday to Friday 8am to 6.30pm. 

If you need help outside of staffed hours, please use the NHS 111 online service.