New doctor and med change

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txtiger

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Three weeks ago, I saw my new epileptologist for the first time. (You may recall, I posted asking about Houston-area doctors.) I was impressed. Of course, since this was my first visit, and she hadn't fully looked over my chart, I gave her a brief history of my E. When I noted that I had a breakthrough sp at the beginning of the year, and that I've noted what felt like could have been the beginnings of auras about once a month since, she asked how I would feel about trying a new med or going up on my Vimpat. Last blood work done showed there was still room above my level in the therapeutic range.

We decided to up the Vimpat. I wasn't able to start til last week because of my insurance, so as of last Sunday I'm at 250 am and 300 pm. Assuming all continues to go well, I will be up to 300 twice a day next week. So far, I haven't felt any side effects.

I did ask about my previous doctor, and she said he's about 90% retired. He still teaches in the medical school. He hired and trained her, and now she's acting head of the epilepsy program at the hospital (an African-American woman, woohoo!)

Hoping all continues to go well. If not, I will bring questions about possible new meds here. Been on Keppra or Keppra XR over 15 years, so I feel sure the fault of the breakthroughs lies with it, but still would be nervous to change. Here's to the Vimpat doing the trick!
 
good luck! Sounds like you're off to a good start. :)
 
Well. Have been on the upped Vimpat dosage almost a month, and so far, so good. But I got an email this week from my pharmacy insurance (Express Scripts) saying that starting July 1, Keppra XR will be a non-preferred drug. Called them and found out that it will cost me 2300-2400 a year, depending on whether I do mail-order or retail (I prefer to pick up at the pharmacy, and reading Express Scripts reviews, I think I made the right choice).

I looked at their preferred drugs list today, and for AEDs, it looks like anything that has a generic is non-preferred, and even some of the brand drugs are preferred. I will be calling the doctor tomorrow to find out what she might suggest, whether she would want to try a generic (believe me, I know not recommended for E), try to get an exception for me, or try something new. Going through the list, I found a handful (literally) that are brand-name plan-preferred for partial seizures:

Fycompa
Lyrica
Sabril (for complex partials, but we know my sps can progress)
Peganone (also for cps)

There is also one tailored for LGS, but it does treat partials: Banzel

Has anyone had experiences, positive or negative, with any of these? Trying to do some research ahead of the call.

Oh, when your employer doesn't want to pay for good insurance, but still better than no insurance
 
I know generics can be problematic for some people with E, either because of sensitivity to slight variations in the amount of the active ingredient, or because of different fillers the meds might contain. But FWIW, I have no problem on Lamotrigine (the generic of Lamictal).

If you don't know for sure that you have a problem with the generics, you might consider giving it a try. You could ask your doc about doing a very slow transition from brand to generic, and about the possibility of taking a slightly higher dose to "cover" any dose variation. Every med switch contains some risk of course -- I wish you luck whatever path you choose.
 
I've used both name brand & generic versions of many of the drugs, & it didn't matter which one I am using. I might seem to be okay for short time, but breakthroughs would begin within few months. I had to switch from Vimpat to Zonisamide due to a change in our insurance--my monthly out of pocket cost would have exceeded $1600. I also take Topiramate & folic acid.
 
my company uses express scripts, tegretol will be a cheap one.

I get mine from there. I would look into that.

I am also on the vimpat savings plan, so its much cheaper than a $60 co-pay every month that i paid for years.
 
It has been a couple of weeks since I last visited. Thank you all for your replies.

So, I've been going back and forth with my neuro nurse and Express Scripts. After I first talked to her, she contacted them to see if they would agree to prior authorization. They told her they didn't need it, so I then called them to find out what's up. They said whoever spoke with her misspoke, because they don't need PA for generic but do for brand. Got a message from her at the end of the day yesterday saying she called them back and I was right. Should be hearing from her on Monday morning. Hopefully now we can get somewhere on this!

Nakamova, if this doesn't work, I'm wondering if my doctor might suggest generic. I'm a little hesitant, at least with the Keppra XR generic, since we have figured out that on its own, brand Keppra wasn't doing the trick. But, if she wants to go that route, possibly another...

gymrat, Tegretol was the first drug tried when it was first figured out that I was having seizures almost 25 years ago. I remember it worked fine for a while, but when I started having breakthroughs, my neurologist kept upping the dosage until I was having intolerable side effects and/or toxicity (specifically dizziness). I'm "only" paying $30/month for Vimpat, so maybe our employers have worked out different copay plans?
 
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Hello txtiger. I am just now planning to switch to vimpat. I've never tried it but seizures are getting more frequent and worse. So I will be weening off of I don't know what and on to vimpat. I've gotta try something new. Things are getting worse.. I hope vimpat works for you. Maybe it will work for both of us.
 
Well, after a lot of back and forth between myself, insurance, and nurse, my insurance denied a prior authorization for the brand Keppra XR. I will be starting levetiracetam ER on Monday. I am just hoping, praying, and crossing my fingers that it still works to control my seizures (no auras for almost 2 months now) and I don't have any side effects. That's one thing about Keppra,never had any of the side effects.

Let's hope this works. I'm due to see the doctor again in November, and hopefully I won't need to before then.

Janus, I hpe the Vimpat works for you. Since my doctor increased my does to 300 mg twice a day, I haven't had any auras.
 
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