bbc.co.uk
Home
Explore the BBC
You and Yours - Transcript
BBC Radio 4
Print This Page
TX 18.08.03 - EPILEPSY CHARITY WARNS THAT THOUSANDS OF PEOPLE COULD SUFFER IF DRUG IS WITHDRAWN TOO QUICKLY 
PRESENTER: PETER WHITE


WHITE
Thousands of people taking an anti-epilepsy drug are trying to persuade one of the world's largest drug companies not to withdraw it, as they plan to do in December. Astra Zeneca is the only company licensed to sell Primidone in the UK which they market as Mysoline but it's one of the old style barbiturate based epilepsy drugs and it takes months, indeed usually more than a year, to come off it safely. The charity Epilepsy Action is warning that 10,000 people still taking Mysoline could have appalling withdrawal symptoms and could suffer seizures if it's pulled at the end of the year as planned. Fifty six year old Frances Bolton from Exeter has been taking Mysoline for 40 years and says coming off it too quickly could be life threatening.

BOLTON
If I didn't take it I think I would probably go into status epilepticus, which are very bad convulsions where you're unconscious for a long time.

ATKINSON
And why do you think this drug is so much better for you than any of the others?

BOLTON
Because it doesn't have very bad side effects. Other drugs I've already tried have had very bad side effects where I can't remember things or I leave the gas on.

ATKINSON
In your view how long does it take for you to safely come off a drug like this?

BOLTON
Approximately 12 months, 18 months, because it's like a withdrawal from heroin, so we need a long time to come off it, very slowly. And I feel it's very important that Astra Zeneca take this into consideration and listen to people like myself who really, we've had the seizures so long and we accept the illness and we live with it, but we don't want it even worse than it is now.

WHITE
Frances Bolton talking to Carolyn Atkinson. Well Dr Morgan Feely is a clinical pharmacologist with a special interest in epilepsy and anti-epilepsy drugs. We heard there Frances Bolton saying it could take about 18 months to come off this drug, I mean why so long and do you, as an expert, would you confirm those kind of figures?

FEELY
Yes I would and it's a bit of a paradox, I'm, as you say, a specialist involved in treating people with epilepsy, but I've had nothing directly from Astra Zeneca. Indirectly I've received an information release that appears to have come from Astra Zeneca in which in one place they speak of the drug not being available after five months time and elsewhere in their own document they say a withdrawal period of six to 12 months is advised.

WHITE
I should say that in their statement to us they are saying that they will be looking again at this, so there is some kind of movement there. Can you - why are they withdrawing the drug in the first place, why is it being considered?

FEELY
Their own statement makes it quite clear that it's an economic decision. This is a small drug in eitherUK or worldwide terms and it's a cheap drug, it's not very profitable, so it's purely an economic decision not to go on with it.

WHITE
Why are so many people on this old-style drug when there are now modern epilepsy drugs which could be used instead?

FEELY
Well of course proportionately there aren't an awful lot of people on the drug, it is a small proportion of the people with epilepsy in this country. But the other reason is if it works don't fix it, that's a fairly popular phrase up in Yorkshire and I think it's right for a lot of people. A lot of these people were put on this drug years ago, it seems to suit them, they have no seizures and they really don't want to contemplate being without it and they certainly don't want to contemplate having to withdraw from it relatively quickly - quicker than seems sensible.

WHITE
Are GPs aware of this - are patients likely to get the right kind of advice?

FEELY
Well unfortunately not, I mean I don't know, not being a GP, I don't know what GPs have had from Astra Zeneca, but I do know from Epilepsy Action that they had one of their members ring in last week and say they'd spoken to their GP about this and the GP had said - Oh there'll be no problem, just stop taking it.

WHITE
Fairly briefly Dr Feely what do you want Astra Zeneca to do?

FEELY
Well I think definitely prolong the period for time to deal with this situation and I think as Frances has just said to you I think that needs to be nearer 12 to 18 months than five months.

WHITE
Dr Morgan Feely thank you very much indeed. And just to confirm Astra Zeneca did decline our request to appear on the programme but they say they apologise for the concern that's been raised and are reconsidering their declared intention to withdraw Mysoline in four months time. However, at the moment they have not come up with an alternative supplier, so as the situation stands the drug, as far as we know, will still be pulled in December. We'll obviously stay with that story.

Back to the You and Yours homepage

The BBC is not responsible for external websites

About the BBC | Help | Terms of Use | Privacy & Cookies Policy