Epilepsy drug Fycompa launched on NHS across UK

[EpilepsyAction1]

13 July, 2015

The epilepsy drug perampanel has been launched across the UK for the treatment of primary generalised tonic-clonic seizures. Will it revolutionise seizure control for thousands of people?

epilepsy.org.uk/news/news/e...

[Yvonne2010]

Really interested to know if other people have tried this as my 10 year old son was put on this last month by GOSH. So far we are up to 4mg and since Friday at 16.12 he hasn't had any seizures but have seen a slight change in his behaviour. ( Please note i did Query his age as on the leaflet it says from 12+)

[EpilepsyAction1 Partner Epilepsy Action in reply to Yvonne2010]

Hi Yvonne2010

Thanks for your message. That’s great that your son has been seizure free since Friday. Changes in behaviour such as anxiety and aggression can be a side effect of Fycompa, so it’s worth keeping an eye on and speaking to your son’s doctor if it becomes a problem.

Best wishes

Grace

Epilepsy Action Advice and Information Team

[Yvonne2010 in reply to EpilepsyAction1]

Unfortunately it never lasted. We then had to change the does back to 2mg because of his behaviour on the 4mg. Looks like we now have to go up 1mg at a time which is not ideal as the tablets were never made to be split. Then there has been the problem of getting hold of the Fycompa as Dr's refused to prescribe it as it's not a stable dose.... Still trying to sort it now

[EpilepsyAction1 Partner Epilepsy Action]

Hi Yvonne

It must be hard for you and your son. Hope things settle down soon.

Regards

Diane Wallace

Advice and Information Team