Experience with Potiga?

Welcome to the Coping With Epilepsy Forums

Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.

Please have a look around and if you like what you see, please consider registering an account and joining the discussions. When you register an account and log in, you may enjoy additional benefits including no ads, access to members only (ie. private) forum nodes and more. Registering an account is free - you have nothing to lose!

S

sarahkay03

New
Messages
15
Reaction score
0
Points
0
My doctor started me on Potiga today, 100mg 3X per day (which seems like a lot to me, but I guess is what's recommended). The goal is to get me off Keppra, which I've been on for about a year.

There isn't a lot of information about Potiga online. I've read the threads that are on this site, but I'd really like to hear some more personal stories. I'm mostly curious about side effects.

Thanks!
 
You may have already seen this, but it is a good general piece on Potiga, including side effects to watch out for: http://professionals.epilepsy.com/medications/p_potiga_intro.html

It seems like a fast start to the Potiga -- usually you would ramp up slowly, esp. if you're already on another med. I hope it goes well and you are able to get off the Keppra smoothly.
 
My neuro started me on Potiga back in December after I crashed my car. But it was an addition to my Keppra (3000 mgs.) I started out slowly- 20 mgs 2x day for a week, increasing it every week. Serious side effects after taking it for years my neuro warned me about is retina changes that could cause blindness. She had me go to an opthamologist to make sure my vision is ok. Every one taking Potiga needs to go to their eye dr. for a baseline eye exam. Another side effect is blue skin discoloration. So far, everything is ok.

Check out the FDA report:
http://www.fda.gov/Drugs/DrugSafety/ucm349538.htm
 
My neuro did mention about possibly putting me on Potiga and taking me off of one of the other meds that I'm on. I told him that I'd like to go off of the Keppra. He said that he wants to find out a little more about Potiga before he does anything.

I have an appointment tomorrow so if he says anything about it, or if he changes me, I'll let you know.
 
I am going to see my doctor in a few weeks and she will put me on Potiga, but she wants to talk to me first. One concern I have is something that it does to Lamictal, of which I am taking now. Does Potigra stop Lamictal from working? The other concern I have is this blue skin thing but I haven't read enough to understand it yet. I haven't seen an eye doctor in nine years, I bet this is a scam set up by my mother.
 
Last edited:
I've been on the Potiga for about a month and a half now. I'm up to 200mg 3X per day, and still taking Keppra, 1000mg/day. My doctor wants me to get up to 900mg of the Potiga, but I've been going slowly.

I don't know how it reacts with Lamictal. As to your other concerns, I haven't noticed any blue skin issues, or anything with my eyesight so far (knocking on wood!). I also haven't had the urinary retention issues, which seems to be the big concern.

I like the medication so far, and have had minimal physical side effects. The big one is I tend to get very dizzy about 10 minutes after taking the pill, but it goes away within 20 minutes or so. The cognitive issues are more frustrating. I have trouble getting words out, especially in the hour or so after I take the pill. I tend to stutter and slur. Also, if I try to drink any alcohol, I feel drunk after a few sips. My doctor never mentioned alcohol, but it says not to drink in the literature.

It also says acetaminophen is a "major reaction", and he never mentioned anything. I had a cold a few weeks ago and took a bunch of cold medicine with Tylenol. Won't make that mistake again!

Overall I am still wary of this drug, as my doctor seems to know very little about it. He said I am only the second patient he has prescribed it to. Yet, this is the eighth drug I have tried this year, and it seems to be the best so far.
 
The other unfortunate thing is that there is no generic, so it's pretty expensive . . .
 
Does Potiga stop Lamictal from working?
Click to expand...
It doesn't stop the Lamictal from working, but it can cause it to be metabolized faster than it would normally. You might need to boost your dose of Lamictal to compensate, or perhaps change the dosing schedule.
 
Thanks for that information. I can only assume Potiga isn't going to work out for me then. I've already had to lower my dose of Lamictal a few times because it makes me so dizzy. There's no way I'm going to boost it and be more dizzy again, especially when my son just started crawling. I am anxious to talk to my dr about Potiga now. I wish you luck with it.
 
Nakamova said:
You may have already seen this, but it is a good general piece on Potiga, including side effects to watch out for: http://professionals.epilepsy.com/medications/p_potiga_intro.html

It seems like a fast start to the Potiga -- usually you would ramp up slowly, esp. if you're already on another med. I hope it goes well and you are able to get off the Keppra smoothly.
Click to expand...


I HAD to work up to 200mg 3 times a day, over the course of 5 week, any faster and i hallucinate and stuff something fierce. I could not imagine 900, I already dont like the 200 and have tried to wean off of it, but iwas having seizures once and twice a day when i got down to 50mg. but i did look healthier
 
Last edited:
You must log in or register to reply here.
Back
Top Bottom