My medication

The antibiotic that most people with CGD take for preventing infection, is co-trimoxazole (also called Septrin). Co-trimoxazole provides protection against a number of infections that can cause problems in CGD and most people find that they can take it okay.

The antifungal medication currently recommended to prevent infection in CGD is itraconazole (also called Sporonox). It helps prevent infections caused by a fungus called Aspergillus, the infection people with CGD are most likely to get. Most people get on okay with itraconazole but a few find that it gives them stomach pain or diarrhoea. If this is a problem it can often be sorted out by changing how the medicine is taken.

Perhaps it is ages since you were ill and you can hardly remember what it felt like. Or perhaps you are feeling fine. Even so, it is important to keep taking your prescribed medication. They are helping to keep you well (It’s worth remembering that you have probably been well because of your medicines!).

The problem with CGD is that it is hard to predict when an infection might happen, or if it does, how serious it will be. If you stop taking your medicines, sooner or later you will develop an infection of one sort or another, which will interrupt your plans and stop you enjoying the things you usually do. It may be tempting to skip your medication, especially if you’re fed up with having CGD and think this will help you ‘forget’ you’ve got it. But don’t – these medicines will help you to lead as normal a life as possible.

Preventing infections in CGD is important for a number of reasons. It will:

• help to keep you feeling fit and well
• keep you out of hospital
• minimise the chances of infections causing damage that will affect your future health. For example, having lots of chest infections can cause lung scarring and lead to breathing problems in the future.

Being wise to the signs of infection helps you to recognise it quickly. This means that it can be treated more easily and that you will be back on your feet faster. Look out for:

• Warm, tender or swollen areas
• Lumps
• Sores with pus or rashes
• Cough or pain in your chest
• Problems with breathing
• Diarrhoea that doesn’t go away after a couple of days
• Frequent or persistent headaches
• Being very sweaty at night
• Losing your appetite
• Losing weight – sometimes you notice this because your clothes feel suddenly loose on you
• Vomiting shortly after eating on a more or less consistent basis
• Pain or difficulty on passing urine
• Difficulty swallowing food

and…

Having a fever or temperature is a sign that the body is trying to fight off an infection. You have a fever if the thermometer says your temperature is 38 degrees or above (Have you got a thermometer at home? Make sure you know how to use it!).

Having a fever generally makes you feel pretty miserable. You might feel as if you are ‘burning up’, feeling ‘shivery’ or alternately hot and cold. Taking paracetamol will help you feel a bit better and can take your fever away for a few hours but this doesn’t mean that the reason you have a temperature has gone away! So it’s okay to take some paracetamol to make you feel better but make sure you get things checked out too!

If you’re not sure if you have any of these symptoms or what they mean, ask for help. Talk it through with your Mum or Dad, see your doctor or call the CGD Clinical Nurse Specialist. You can also email the CGD nurse – that’s sometimes a bit easier than having to talk on the phone or face-to-face.