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of everyone affected by epilepsy

Don't Sub My Drugs

Epilepsy Action believes it is important for people with epilepsy to have exactly the same version of their anti-epileptic drug (AED) every time.

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

Not all healthcare providers believe that taking a different version of an AED can affect someone’s epilepsy. However, the National Institute for Health and Clinical Excellence says that people with epilepsy should get the same version of their AED wherever possible.

In a 2009 survey by Epilepsy Action, 43 per cent (almost a half) of people were given different versions of their AEDs. Of these a quarter said their epilepsy was worse as a result. Many of those who spoke to their doctor or pharmacist about their concerns were told that there was nothing to worry about. Some found that their doctor or pharmacist were unaware of the issues or said that all brands are the same.

Most drugs have a generic name and a brand name. The generic name is the same as the name of the main ingredient of the drug. The brand name is given by the drug company. For example, carbamazepine is the generic name and Tegretol is the main UK brand name, given by the drug company. When your doctor writes only the generic name of your AED on your prescription it is called generic prescribing. This means the pharmacist can give you any version of your AED made by different drug companies. These versions do not usually have a brand name.

How to get the same version of an anti-epileptic drug (AED)

Working with your doctor or nurse is the best way to get the same version of your drug. Ask them to prescribe by brand name. If the brand is written on your prescription, the pharmacist must give you that specific brand. If you are already taking a generic AED, and are happy with it, your doctor can write the name of the drug company, as well as the drug name, on your prescription. If you go into hospital, you can show your card to the medical staff so they can see which version you take.

You can now download a PDF version of the Don't Sub My Drugs card to fold and put in your wallet or purse.

Download the PDF

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