Why do I have to take tablets or medicines every day? That’s the question you might find yourself asking.
The fact is, taking daily preventative medication is the best way of making sure you don't get infections.
Because your white cells don't work properly, your body needs extra help to fight off infections. These medicines provide that extra help.
Sometimes the medicines won't quite be enough to fight off the infection. Even if you've taken them as you should, you can still get an infection. But taking the correct medicines when you should do helps your body defend itself against the infection.
So what medicines do you have to take? And how do you know if you have an infection? We take a look at these issues below.
Antibiotics (medicines for bacterial infections)
The antibiotic that most people with CGD need to take to prevent infection is co-trimoxazole (also called Septrin). Co-trimoxazole protects against a number of bugs that can cause problems in CGD and most people find that they can take it okay. A few find that Septrin doesn't agree with them. This is quite unusual but if this happens it’s possible to use another, similar antibiotic.
Antifungals (medicines for fungal infections)
The antifungal medication recommended to prevent infection in CGD is itraconazole (also called Sporonox). It helps prevent fungal infections caused by a fungus called Aspergillus, one that people with CGD are more likely to get. Most people get on okay with itraconazole but a few find that it gives them stomach pain or diarrhoea. This problem can be sorted out by changing how the medicine is taken.
I'm feeling OK. Why should I bother with my medication?
Perhaps it is ages since you were ill and you can’t 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.
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 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 - medicines will help you to lead as normal a life as possible.
Preventing infections in CGD is important for a number of reasons including that it will:
- keep you feeling fit and well, helping you stay out of hospital
- minimise the chances of 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.
How do I know if I have an infection?
Knowing the signs of infection helps you to recognise it quickly. This means that infections can be treated quickly and easily and that you will be back on your feet faster. Look out for:
- warm, tender or swollen areas
- 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
- severe sweatiness at night
- loss of appetite
- weight loss
How do I know if I have a fever?
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. Other signs that you have a fever are feeling as if you are 'burning up', 'shivery' or alternately hot and cold. Taking paracetamol will help you feel better and take your fever away for a few hours. But this doesn't mean that the reason you have a temperature has gone away.
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 doctor or call the CGD Society Clinical Nurse Specialist. You can also email the CGD nurse which is sometimes easier than having to talk on the phone or face-to-face.
This page has been reviewed by the Medical Advisory Panel. January 2013.
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