Anyone on Fycompa (Perampanel)?

[talley_valley]

My daughter's neurologist has discussed trying Fycompa along with her Vimpat. We are currently trying to get the blood levels of her Vimpat up, but she is having several (6 or more) simple partials every day. I know they aren't dangerous but they scare her so it is not acceptable seizure control in my book. Has anyone tried Fycompa yet and how did it work for you?

 

[Nakamova]

Hi talley_valley --

I added Perampanel (the generic name of Fycompa) to the title of your thread, in case folks are more familiar with that. It's a relatively new drug here in the US (approval in Fall of 2012 I think), so there may not be a whole lot of people who have tried it.

Here's one mention in the archives:
http://www.coping-with-epilepsy.com/forums/f22/perampanel-12432/

 

[talley_valley]

Thanks, I didn't even think about putting the generic name. FDA approved it October 2012. From everything I have researched it seems to be a great approach to treating epilepsy. It looks to me that it blocks a group of every excitatory receptors (AMPA glutamate receptors). Since the glutamate is the primary excitatory neurotransmitter it is reasonable that it should stop the seizures from happening. My draw back is the possibility of turning my hormonal, preteen daughter into a serial killer. Huge black box warning about homicidal ideation and aggressive behavior. It was bad enough with the Vimpat's warning of suicidal ideation but homicidal too? Wanted to know if anyone had take the jump and tried it and if they had any issues. I really don't want to try it if I'm going to need to keep IM Haldol in the house to sedate her;-)

And a second question......My neurologist wants her Vimpat level at a 10. Has anyone else heard this level? I have seen 5 in my research but he said he saw the best results at ten.

Thank you everyone. I would go crazy without this forum.


Sent from my iPhone using Tapatalk

 

[Nakamova]

From what I could find the Vimpat therapeutic range is "not well established", but the suggested range is 5.0-​10.0 µg/mL (with a maximum dose not to exceed 400mg/day). So your neuro is aiming for the top of the range. (My inclination would be to find the lowest possible dosage that provides seizure control w/o intolerable side effects, rather than aim for a number that may or may not correlate to efficacy. But I'm not a doctor.) Worth asking your neuro how many patients he's treated with Vimpat at that dose level. (Also perhaps their ages. The EU recommendations for Vimpat specify that it's for ages 16 and older.)

I hope the Fycompa/Perampanel helps, esp. if the Vimpat doesn't do the trick.

 

[cookiemonster]

Fycompa / Perampanel

Hi Talley Valley
Im just wondering if your daughter stayed on Fycompa?
I've recently joined and my daughter has just commenced a trial of Fycompa. I too share your concerns regarding the side affects!
The last couple of days have been full of childlike irritability/some aggression and I am trying to push through these affects as she really needs to give this drug a good try. However, her experience with lots of other AED's makes me think there is no good reason that she wont experience unwanted side effects.
My profile will show our background and complications.
I understand the impact of frequent, daily seizures, so maybe we could stay in touch?