Explanation

Desferrioxamine mesilate (also called Desferal) is a type of medicine called an iron chelator. It removes the iron from your body if you have too much of it. If you have a lot of blood transfusions (like if you have thalassaemia or sickle cell disease), kidney dialysis, or some types of anaemia, you can get a build up of iron in your blood. If the extra iron is not removed, it can travel through your bloodstream to organs like your liver and heart and stop them working properly.

What does it do?

Desferrioxamine mesilate holds onto the iron in your blood and when you have a wee, they come out of your body together in your urine.

What does it look like?

Desferrioxamine mesilate is a white powder that comes in a glass vial. This comes with a clear liquid that you mix with the powder to make a clear, pale yellow, liquid. This liquid is for injections and for use in an infusion pump.

When do I have to take it?

Your doctor will decide what dose of desferrioxamine mesilate is right for you and when you should take it. A doctor or nurse may prepare your injection for you, or they may show you how to do it yourself at home.

You must mix the powder and the clear liquid together before you inject yourself, and must do exactly what the doctor showed you. If you forget or are unsure what to do, call your doctor and ask. You must have the injection within 3 hours of mixing the powder and the liquid together if you do it at home. If the pharmacist or hospital does this for you, it's okay to have your injection within 24 hours of them mixing it.

Your doctor will tell you how often to take desferrioxamine mesilate. You might find it helpful to use a calendar or diary to remind you when to take it.

But what if I don't feel like having it?

Even if you don't feel like having your injections, it's important that you keep your appointment with the doctor/nurse or make sure you carry on doing them at home. If you don't want to keep having this medicine for some reason, it's important that you talk to your doctor about it. It can be dangerous if you stop having your injections without your doctor telling you it's okay to do so.

What should I do if I forget to have it or if I use too much?

It's important that you keep taking it for as long as your doctor has told you to. If you feel that you don't want to have it any more, you should talk to your doctor, but don't just stop taking it!

If you miss an appointment or forget to have an injection, let your doctor or nurse know immediately and they will tell you what to do.

If you think you have either been given or have taken TOO MUCH desferrioxamine mesilate, or you think you have been given or taken it TOO OFTEN, tell your doctor or nurse straight away.

How much do I use?

Your doctor will work out exactly how much desferrioxamine mesilate you will need and at what times you should have it. This will depend on how much extra iron you have in your body and how old you are.

Desferrioxamine mesilate can be injected in different ways. Your doctor will decide which ne is best for you, but it could be using any of the ways below:

injection into a muscle

injection into a vein over a period of time, not all in one go (called a slow infusion. A doctor will have to do this one for you)

injection under your skin. You may get it over a period of time using a special pump

injection into your peritoneum (the bag that hold all the organs inside your abdomen. A doctor will have to do this one for you)

What are the most likely side effects I might get if I use desferrioxamine me...

When you start having desferrioxamine mesilate you may get some side effects, although it's unlikely. If you notice anything, you should ask your doctor about it.

Likely side effects you may notice include:

pain, swelling, redness, a rash, itch or scabbing where you do the injection

sore muscles or joints in your arms or legs

Headache, nausea (feeling sick) or fever

Itchy rash

Vomiting (being sick) or stomach pains

Asthma

Some side side effects can be quite bad. If you notice any of the things in the list below, you should stop taking desferrioxamine mesilate straight away and go to the hospital immediately:

difficulty breathing, wheezing or coughing

feeling like you are going to faint, have a rash, feel itchy or have swelling on your face

One of the most usual side effects you could get is that the extra iron that the desferrioxamine mesilate is pulling out of your body might turn your urine a reddish-brown colour. It's usually nothing to worry about, but if you are worried you should talk to your doctor or nurse.

You must tell your doctor immediately if you start to get a fever, sore throat or stomach pains while you are taking desferrioxamine mesilate. This is because certain infections can become more serious if you are taking this medicine, so it's important that your doctor knows as soon as possible.

What other side effects might I get?

The other side effects that you can get after taking desferrioxamine mesilate are very unusual, so you're probably not likely to get them.

Some of these can be serious though, so it's important for you and the adult looking after you to look out for them, just in case.

Tell your doctor or hospital straight away if you notice:

blurred vision, loss of vision or finding it harder to see, not being able to see colours as well, not being able to see at night, blind spots

deafness or ringing in your ears

diarrhoea (runny poo)

headaches, nosebleeds, dizziness, looking pale, feeling tired or having trouble breathing when exercising

fever, chills, sore throat or mouth ulcers

bleeding or bruising more easily than normal

stomach upsets

Is it safe for me to be using desferrioxamine mesilate?

Before you start taking desferrioxamine mesilate you should tell your doctor about any medical problems you know you have, including any allergies, or about any serious problems you have had in the past. It's particularly important to let your doctor know if you have any of the conditions below:

Kidney problems or if you're on dialysis

Heart conditions

Hyperparathyroidism

If excess aluminium has affected your nerves (aluminium-related encelphalopathy)

Is it okay for me to be having desferrioxamine mesilate if I'm already taking other medicine?

Desferrioxamine mesilate may not work as well as it should if used at the same time as other medicines, or the other medicines may not work as well as they should. Also, using two medicines at the same time can be dangerous.

So, you must tell your doctor if you're taking any other medicines, including herbal medicines or any you have bought without a prescription. It's especially important to tell your doctor if you are taking any of the medicines in this list:

Prochlorperazine

Erythropoietin

Vitamin C

Is there anything else I need to know about desferrioxamine mesilate?

If you use desferrioxamine mesilate for a long time, or you have kidney problems and are on dialysis, you may need to have your eyes and ears tested about every 3 months. This is because desferrioxamine mesilate can affect your vision and your hearing.

If you need to have an X-ray or any other type of scan, make sure you let the doctor or nurse know that you are being treated with desferrioxamine mesilate, as it may affect the results.

You should store the vials of desferrioxamine mesilate powder below 25 degrees, but don't put it in the fridge. You should only use a vial once.

What if I have any more questions?

If you have any other questions, you can ask your doctor, or chat to other people who are taking desferrioxamine mesilate in the Medikidz forums and virtual world, Mediland.