Xcopri and Onfi

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Snax32

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Hi,
First post. My 18 year old son is on 300mg of xcopri, 200mg BID amictal and 10mg BID of Onfi. Does anyone have experience taking xcopri and onfi together? He is so tired, sleeping 14 hours at night and taking a nap some days. Also, his balance has gotten worse and has trouble walking which he did not before. I have searched a lot and have only found the drug interactions can cause these side effects but no specific dosing recommendations when prescribed together. We are talking with our neurologist regularly and they have reduced the onfi a couple weeks ago. Just looking for any advice. Thanks in advance.
 
Hi Snax32,

Welcome to CWE! You son should not be on xcopri and onfi these two drugs interact with each other and will make your son
extremely exhausted and on top of that his balance and motor skills may be off, and it will be hard for him to focus.
I've had epilepsy for 51 yrs. and take my word the best thing for you to do to help your son is to have the Dr. order a DNA test
by doing this the Dr. will be able to see the amount of enzymes in his liver and see his body chemistry and by looking at that they
will be able to find the best seizure med for him with the least side effect or show if he is drug resistant. I am drug reistant so my
Dr. told me to start using the medical marijuana and that has done wonders reducing my seizures. I buy it online at plus cbd and I
get it in a mouth spray and spray it in my mouth twice a day and I can't believe how it has reduced my seizures. Have your son
cut back on the carbs and starch foods and stay away from nutra sweet (apartame) because that will cause more electrical activity
in the brain and in turn trigger seizures.
I wish you and your son only the best and May God Bless the Both of You,

Sue
 
Hello. I'm taking Xcopri--200mg/day, but with 500mg Zonisamide/day (I take 300mg of it in the morning, 200mg in the night). I've taken the Xcopri at night since I started taking it. My neurologist said that would minimize it's side effects, & I feel that is true.
 
Hello
I'm totally new to the forum.
I've had epilepsy since 2013, starting with nocturnal seizures, which were controlled. No seizures for 5 years.
But then I begun having tonic clonic seizures. Again these were brought under control.
Then, I started having focal aware seizures which I still have approx. 1/week. I've tried various medication combinations but none have brought the seizure under control.
My neurologist has suggested Cenobamate & would just like to know of anyone else's experience.
Thanks
 
Hello. I've had epilepsy since childhood, but wasn't diagnosed until 1987, when I suddenly had 3 or 4 grand mal seizures (I haven't had any since). I would complain of "weird feelings" in my head which were hard to describe. During an EEG being done after the grand mals, I had one of those feelings, & the doctors finally recognized them as simple partials.
About 25 years ago, I began having complex partials as well. They've been extremely troubling, as they occur w/o any aura. Theses seizures have caused me to injure myself MANY times--I've burned myself (second & third degree) at least 8 times. I've tried every AED out there. The ones I wasn't allergic to would work for a short time, then the breakthroughs would begin again. I'm currently on 500mg Zonisamide & 200mg Xcopri/day. Even then, I have 1-3 breakthrough complex partials/month.
 
Cenobamate is the generic name for XCopri. As my wife has never taken it, I wasn't aware until I looked it up just now.
 
Bernard said:
Cenobamate is the generic name for XCopri. As my wife has never taken it, I wasn't aware until I looked it up just now.
Click to expand...
I didn't know there was a generic for XCopri. Is it available in the US?
 
You should ask your pharmacist.
 
Xcopri is available in the US, but is no generic is version available. Many insurance companies (like ours) might also only permit the pharmacy to dispense a month's prescription at a time, while other AEDs are dispensed in 3 month quantities.
 
Sabbo said:
Xcopri is available in the US, but is no generic is version available. Many insurance companies (like ours) might also only permit the pharmacy to dispense a month's prescription at a time, while other AEDs are dispensed in 3 month quantities.
Click to expand...
I can only get one month's prescription at a time. I have to wait until just a few days before the current prescription runs out before I can get it refilled too.

I couldn't handle the side effects of Keppra so stopped taking it and I started taking Xcopri at the beginning of the year. I'm not sure if I'm having less seizures, I know I'm not having more though. Getting rid of the side effects of Keppra is the best part.
 
It's been the same way with me on Xcopri. Single month refills, waiting until less than a week is left to obtain refills. What's been worse is that our pharmacy often doesn't have it. That means I have to cut it VERY close--having only 1 or 2 days left. This last time that I got a refill, however, I wonder if the person made a mistake or if they have changed the rules for this AED. The pharmacy gave me 3 months!
 
Sabbo said:
It's been the same way with me on Xcopri. Single month refills, waiting until less than a week is left to obtain refills. What's been worse is that our pharmacy often doesn't have it. That means I have to cut it VERY close--having only 1 or 2 days left.
Click to expand...

My pharmacy told me to let them know 4 or 5 days before I'm going to have it filled so they can make sure they get it in. I can't pick it up until I'm able to though.

Sabbo said:
This last time that I got a refill, however, I wonder if the person made a mistake or if they have changed the rules for this AED. The pharmacy gave me 3 months!
Click to expand...

Holy cow that must have been a mistake! Everyone told me that I could only get one month's prescription at a time.
 
Because I'm still averaging at least 1-2 breakthroughs per month, my neurologist just raised my Xcopri to 250mg/day. They'd like me to have a stereo EEG done, & I said I'd be up for it if insurance would pay for it. I'm still paying off a copay of close to $800 from the Video EEG from last year.
 
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