Trientine for Wilson's disease

About trientine

Wilson's disease is a rare genetic disorder which affects only a limited number of people. It is a metabolic disorder which results in the build-up of copper in some parts of your body, particularly in your liver. These excess amounts of copper cause damage to the organs which are affected.

Wilson's disease is treatable. The aim of treatment is to remove the toxic levels of copper from your body, and then to prevent copper from re-accumulating. This is done by taking chelating medicines such as trientine which bind with the excess copper to form complexes which your body can remove. You may be given other medicines alongside trientine which will help to prevent copper being absorbed from the food you eat.

Before taking trientine

Some medicines are not suitable for people with certain conditions, and sometimes a medicine may only be used if extra care is taken. For these reasons, before you start taking trientine it is important that your doctor or pharmacist knows:

• If you are pregnant, trying for a baby or breastfeeding.

• If you are taking any other medicines. This includes any medicines you are taking which are available to buy without a prescription, as well as herbal and complementary medicines.

• If you have ever had an allergic reaction to a medicine.

How to take trientine

• Before you start this treatment, read the manufacturer's printed information leaflet from inside your pack. The leaflet will give you more information about trientine and a complete list of side-effects which you may experience from taking it.

• Your doctor or pharmacist will tell you how many tablets or capsules to take and when to take them. As a guide, a usual dose for an adult is 3-6 tablets or 4-8 capsules a day, taken divided into 2-4 doses. The dose for children is lower than this and depends upon their age and how they respond to the treatment. The dose will be printed on the label of your pack to remind you - take trientine exactly as your doctor says.

• If you have been prescribed capsules, take them 30-60 minutes before a meal. Try to take your doses at the same times each day, as this will help you to remember to take them.

• If you have been prescribed tablets, take them at least one hour before meals or two hours after meals. You should not take the tablets within one hour of any other medication.

• If necessary the tablets can be broken in half.

• It is important that you do not take indigestion remedies or any medicines containing iron or zinc at the same time as trientine. If you need to take either of these types of medicines, you should take them two hours before you are due to take trientine, or wait until two hours afterwards.

• If you forget to take a dose, take it as soon as you remember,unless it is nearly time for your next dose, in which case leave out the missed dose. Do not take two doses together to make up for a forgotten dose.
  

Getting the most from your treatment

• Try to keep your regular appointments with your doctor and clinic. This is so your progress can be checked. You will need to be followed up by a specialist doctor and have regular blood tests.

• Follow carefully any advice you have been given about what food or drink to avoid. It is likely that you will be advised to avoid drinking alcohol (because it increases the risk of damage to your liver) and also to avoid foods which are high in copper, such as liver, chocolate, nuts, mushrooms, legumes and shellfish.

• Treatment for Wilson's disease is lifelong. It is important that you continue to take your medicines even if you feel well and are free from symptoms.

• If you are due to have an operation or any dental treatment, tell the person carrying out the treatment which medicines you are taking.

• If you buy any medicines, check with a pharmacist that they are safe to take with your other medicines.

Can trientine cause problems?

Along with their useful effects, all medicines can cause unwanted side-effects although not everyone experiences them. The table below lists some of the most common ones associated with trientine. You will find a full list in the manufacturer's information leaflet supplied with your medicine. The unwanted effects often improve over the first few days of taking a new medicine, but speak with your doctor or pharmacist if any of the following side-effects continue or become troublesome.

Speak with your doctor if you experience stomach pain or diarrhoea that doesn't go away.

If you experience any other symptoms which you think may be due to this medicine, speak with your doctor or pharmacist.

How to store trientine

• Keep all medicines out of the reach and sight of children.

• Store in a cool, dry place, away from direct heat and light.

• If you have been prescribed Cufence® capsules, store them in the original container and keep it tightly closed to protect them from moisture.

Important information about all medicines