Getting the same version of your epilepsy medicine every time

The information that follows is mainly for UK residents. If you live outside the UK, please contact your local epilepsy group.

Contents

• Why some medicines have more than one name
• Generics and generic prescribing
• Parallel importing
• Why it is important to get the same version of your epilepsy medicine every time
• How to get the same version of your epilepsy medicine 
• When the same version of an epilepsy medicine isn't available
• Reporting problems with epilepsy medicines 

Introduction

Epilepsy Action believes it is important that you have exactly the same version of your epilepsy medicine every time you pick up a prescription.

Why some medicines have more than one name

Most medicines have a generic name and a brand name. The generic is the same as the name of the main ingredient of the medicine. The brand name is given by the drug company. For example, carbamazepine is the generic name and Tegretol is the main UK brand name.

You may also come across medicines with other names. This is because they have been brought in from abroad. These medicines are known as parallel imports.

Generics and generic prescribing

The company that first makes the medicine owns the ‘patent’ (exclusive right) to make it. They also give the medicine its main brand name. After around 10-12 years, the patent runs out. Once this happens, other companies can make their own version of the medicine. These other versions are known as generics. Generics might be a different shape or colour to the main branded medicine. The other companies that make generics may also give them a different brand name. For example, there is a generic version of carbamazepine called Carbagen SR.

Generic prescribing means your doctor writes only the generic name of your epilepsy medicine on your prescription. This means the pharmacist can give you any version of your epilepsy medicine made by any company. To keep costs down, they may choose a cheaper version.

Parallel importing

Some companies make the same medicine at factories in the UK and abroad. For example, the epilepsy medicine Tegretol is made in a number of countries as well as the UK. Parallel importing means a medicine wholesaler buys from a company’s overseas factories to supply to UK pharmacies. So, if your pharmacist gives you Tegretol, it could have been made in the UK, Netherlands, Italy, or some other country.

There are a number of things that could show your epilepsy medicines are parallel imports. For example, the packaging may look different or have wording in another language. The medicine might also have a different name. For example, a slow release version of the generic medicine carbamazepine, called Tegretol Prolonged Release in the UK, is called Tegretol Divitabs in a number of European countries.

You might be given a parallel import if the wholesaler that supplies your pharmacy can buy a particular medicine from abroad more cheaply than in the UK.

Why getting a parallel import may matter

In theory, a medicine with the same brand name, such as Tegretol, should be the same, wherever it is made. However, a number of people have reported problems with their epilepsy when they have been given parallel imports. This may be because there are very small differences in the overall make-up between their usual medicine and the parallel import. Or it may be that they are worried about being given a different version. This can lead to stress and anxiety, which could trigger a seizure. Quality is also a concern with parallel imports. This is because they may not always be stored in perfect conditions during the import/export process.

Other imported drugs

Some prescription medicines available in the UK have to be imported because they are not made in the UK. An example is the epilepsy medicine topiramate (UK brand name Topamax).

Why it is important to get the same version of an epilepsy medicine every time

A number of people, who have switched between different versions of epilepsy medicines, have had an increase in side-effects. They have also reported having more, or different, seizures.

Epilepsy Action’s 2009 Consistency of Supply survey found that almost a half of people surveyed were given different versions of their epilepsy medicines. Of these, a quarter said their epilepsy was worse as a result.

Having a breakthrough seizure can have a major impact on a person’s life. They might lose their driving licence for a time. Or they might lose their job. The seizures themselves may be unpleasant or cause injury. And, rarely, seizures can be fatal.

An increase in side-effects can also bring major problems. Unwanted side-effects can affect learning, work and social life.

Not all healthcare providers believe that taking a different version of epilepsy medicines can affect your epilepsy. However, the National Institute of Health and Clinical Excellence (NICE) support Epilepsy Action’s concerns. NICE recommends that people with epilepsy continue to get the same version of their epilepsy medicine wherever possible. If the person who prescribes your epilepsy medicine wants to change your version, they should discuss this with you first.

NICE is an organisation that provides guidance on treatments and care for people using the NHS in England and Wales. More information about getting the same version of your epilepsy medicine can be found at the NICE website: www.nice.org.uk 

How to get the same version of an epilepsy medicine

The best way to get the same version of your medicine is to ask your doctor to prescribe it by brand name. The law says that if the brand is written on your prescription, the pharmacist must give you that specific brand. If you are already taking a medicine without a brand name, and are happy with it, you could ask your doctor to write the name of the drug company and medicine name, on your prescription. You can ask your doctor to write ‘no parallel imports’ on your prescription, but your pharmacist doesn’t have to take any notice of this. However, many pharmacies will do their best to help their customers, so it may still be worth asking your doctor to do this.

When the same version of an epilepsy medicine isn’t available

There are some circumstances where it can be difficult, or impossible, to get the same version of an epilepsy medicine. For example, your pharmacy may decide to buy in their medicines from a different wholesaler.  In this instance, you might be able to take your prescription to a different pharmacy, to see if they can get your usual version. But, if you have to change to a different version of your epilepsy medicine, you could keep a chart or seizure diary to record any changes to your seizure control or side-effects. You can then show this to your doctor so they can review your treatment and advise you on the best course of action.

Reporting problems with epilepsy medicines

You, or your doctor, can report any problems with your epilepsy medicine to the Medicines and Healthcare Products Regulatory Agency (MHRA), using the Yellow Card Scheme. The Yellow Card Scheme records information about the side-effects patients have had from their medicines. Yellow Cards are available from your GP, pharmacist or NHS Direct. You can download or complete a Yellow Card at the MHRA website:
www.mhra.gov.uk/yellowcard

Further information about the Yellow Card scheme is available in the UK from your national NHS helpline 

England - NHS Direct 0845 4647
(http://www.nhs.uk)
Wales - NHS Direct Wales 0845 4647
(http://www.nhsdirect.wales.nhs.uk)
Scotland - NHS 24 08454 24 24 24
(http://www.nhs24.com)
Northern Ireland - nidirect.gov.uk
(http://www.hscni.net)

Drugwatch

Epilepsy Action keeps a watch on any changes to epilepsy medicines in the UK. For more information go to Drugwatch.