Potiga

[valeriedl]

I went to the neuro today and I'm hoping to get off some of my meds. Mainly kepra before I kill everyone!

He told me that there is a new med that is coming out called Potiga. Has anyone heard of this or tried it?

 

[Nakamova]

It's also called Retigabine or Ezogabine. You can read about it here: http://en.wikipedia.org/wiki/Retigabine

I checked the CWE archives -- as far as I can tell, no members have reported actually trying it yet.

 

[qtowngirl]

Thanks Nak, sounds somewhat promising for those of us with never-ending partials and refractory E. Would be so nice to have a medication finally do the trick.
Ughhh... would not like that bladder retention though.

 

[Silat]

I'm really curious to hear about how this one works...
I saw it's been approved by the FDA, but is it in production and available yet? I'm also curious what the cost would be...

 

[valeriedl]

I read about it and as qtowngirl said the bladder effects don't sound like they'd be fun to have. I know I pee around 10 times a day. I drink a ton, and I'm always thirsty. Don't know if that's a side effect from on of the meds I'm on now or not?

All the other sid effects sound like things that I'm going through now with all the other meds I'm on.

My neuro said he's going to wait till my next appt, in November, to see if it's something that he might want to put me on.

 

[valeriedl]

I copied this from Wikipedia and have a question:

'Retigabine appears to be free of drug interactions with most commonly used anticonvulsants. It may increase metabolism of lamotrigine (Lamictal), whereas phenytoin (Dilantin) and carbamazepine (CBZ, Tegretol) increase the clearance of retigabine.'

Does this may mean that it will make Lamictal work better but make Tegretol not work better? I'm on both of them. I'm also on Depakote and Keppra but it doesn't say anything about them.

I don't take Dilantin, I'm alergic to it.

Thanks for who ever understands technical terms better than I do.

 

[Nakamova]

What it means is that you might need to increase your dose of Lamictal if you added Retigabine. This would be to compensate for the fact that Retigabine makes Lamictal go through your body faster than normal.

If you were on Dilantin or Tegretol, you might have to go on a higher than normal dose of Retigabine -- to compensate for the way those meds speed up clearance of Retigabine from the body.

If you were on Retigabine and Dilantin and Tegretol all at once, and you decided to taper off of the Dilantin and/or Tegretol, you would need to monitor levels closely, and decrease the Retigabine a bit at the same time. With less Dilantin and Tegretol in your system, the Retigabine would stay in your body longer, so you would need less of it.

I hope this makes sense.

 

[valeriedl]

Thanks for being smart Nakamova! That did make sense.

I was hoping on getting off of the Keppra. But who knows I might beable to get off of it and on to the Retigabine but take higher dosages of the other meds.

 

[Nakamova]

Ideally the Retigabine would work all by itself, and you could get off of those other meds!

 

[C0urt]

starting potiga for a month then going to talk to my neuro about it,
the dosing is wow,
12 pills a day. and i take tegratol, it doesnt seem to like that according to the paper work. so we will see.

he said it should help my epilepsy if nothing else. sounds like fun.

 

[Nakamova]

Keep us posted C0urt, hope it works well for you.

 

[sweetlpn79]

I just started Potiga today too... It is replacement for Lamictal. Little nervous about it, should be interesting!

 

[valeriedl]

I just started Potiga today too... It is replacement for Lamictal. Little nervous about it, should be interesting!

starting potiga for a month then going to talk to my neuro about it,
the dosing is wow,
12 pills a day. and i take tegratol, it doesnt seem to like that according to the paper work. so we will see.

he said it should help my epilepsy if nothing else. sounds like fun.

Keep me posted about how these work for you. If you have any side effects that you have trouble with. PM me if you want to.

Thanks

 

[C0urt]

we will see, i will continue taking tegratol and topamax at the same time,
lots of drugs,

after three weeks,
16 pills in the morning, 15 at lunch, 16 pills at night.

fun.

considering there may be a side effect or the fact I may be psychotic with out my meds. Things could get interesting if I miss them or something.

 

[C0urt]

up to the full dose now, 4 50mg 3 times a day,
it acts like a blood thinner. other than that, I am generally ok. havent had a major seizure all month as far as I can tell. even sucked up a stress related grand mal last night I think. still felt the aura. but that was about it. got the tingly bit but i lived.

 

[valeriedl]

Keep me up dated on how you're doing with it if you don't mind. I really want to know if it's something that I want to consider changing to.

 

[sweetlpn79]

side effects

C0urt, have you had any side effects? Anything significant?

 

[C0urt]

drink lots of water, makes it hurt a little when you pee.

other than that, nothing noticable.

i havent had a seizure in a month, so i can only hope for the best.

 

[C0urt]

my doc seems excited with the current results.
my blood test weren't great but they are ok, he wants me to call him back if it gets worse,
apparently he doesn't have a lot of people on it yet.

one seizure in the past month or so i think up from several a week. my memory isnt to bad compared to several other meds, I am not a fan of taking it with my other meds, and wish I could get to the point I was just taking it.
but i figure it is a patience thing. I am still on samples, and this is only the second month,

200mg 3 times a day, makes me tired headaches and stuff, but it could be much worse i guess .

 

[C0urt]

i might be developing a tolerence, i hope not,