Community Forum Archive

The Epilepsy Community Forums are closed, and the information is archived. The content in this section may not be current or apply to all situations. In addition, forum questions and responses include information and content that has been generated by epilepsy community members. This content is not moderated. The information on these pages should not be substituted for medical advice from a healthcare provider. Experiences with epilepsy can vary greatly on an individual basis. Please contact your doctor or medical team if you have any questions about your situation. For more information, learn about epilepsy or visit our resources section.

Dilantin to Lamictal (and why the he l l is the price so high??!!)

Sat, 10/29/2011 - 11:38
Hi, I visited a new neurologist yesterday (a good one from my experience so far), and she suggested I get off Dilantin and switch to Lamictal. A few questions: 1. Any experience with Lamictal (good or bad?) Side effects? The neurologist told me she was surprised no one switched me as Dilantin has been around since 1945 and isn't the best medicine since levels fluctuate so easily. Instead she suggested Lamictal, Trileptal, or Topomax (in order of her favorite to least favorite). She said newer meds like Vimpat aren't as well tested for long-term use. She said I could develop a rash but it only happens in 0.8% of people - looking here seems like a lot more develop a rash (maybe not as severe). She's starting me with 25mg the first week and moving up 25mg each week. She said that I need to stay on Dilantin since this won't be at a theroputic level until 10 weeks or so. The reason she suggested I switch is because while on Dilantin I still have been having seizures (400mg/day) I had 5 in the last 3 months. 2. Why is brand name Lamictal sooooo expensive? I went to CVS, Kroger (local grocery store), Walgreens, Costco and all said it is around $1,500 - $1,600 for 240 25mg tablets! Luckily I have insurance and think Kroger made some type of mistake because they told me with insurance its $100 :-) 3. Is this the light at the end of the tunnel? Do you think my seizures will be more controlled on Lamictal or has anyone had it where seizures were more controlled? :-) I guess basically the goal here is to get seizures controlled so you can move on with your life. I am still not going to take risks like going scuba diving or swimming or escalators just because I could still have a seizure anytime. I guess that is the most frustrating thing about epilepsy is that you never know what is going to happen and doctors don't know either. It seems its all "we'll try and see if it works and be careful by the way because you might have seizures". It's just frustrating but I am glad I have somewhere to vent. Overall I am pleased with this doctor and she is easy to get ahold of (gave me her cell phone number and some ativan in case I have seizures she said swallow it or put it under your tongue). Thank you all!

Comments

Re: Dilantin to Lamictal - An Update

Submitted by christopherpaul on Mon, 2012-01-30 - 04:23
So I titrated slowly to 400 mg/day of Lamictal and have been on it roughly a month. I've had 2 breakthrough tonic clonic seizures in the last 10 days. This seems awkward to me and is frustrating since the doctor made this out to be the light at the end of the tunnel med. I feel like I should try a different med but I'm going to call my doctor tomm.

Re: Dilantin to Lamictal\

Submitted by annegeorge on Mon, 2012-01-30 - 20:14
Lamictal works for me. It's just the issue of finding the right dosage. My doctor and I finally found one that completely stops all types of seizures (i have juvenile myoclonic seizure disorder). Yes, expect a little hair loss. I'm not balding or anything but my hair definitely falls out easier. However it is the SAFEST one, especially if you're a woman planning on having children. Lamictal just recently lost it's patent and had to release it's drug formula. It has been so expensive because there was NOT a generic version until recently! I'm sure as soon as people start switching over to the generic version more, brand name will probably go down a little bit. They have patient assistant programs that can help you pay for it.

Re: Dilantin to Lamictal\

Submitted by christopherpaul on Tue, 2012-01-31 - 11:20

I understand that.

 

My dr. wants to switch me from the generic to brand name and down to 3/day to combat the insomia. I just don't see how 3/day instead of 4/day will stop seizures more...

I understand that.

 

My dr. wants to switch me from the generic to brand name and down to 3/day to combat the insomia. I just don't see how 3/day instead of 4/day will stop seizures more...

Sign Up for Emails

Stay up to date with the latest epilepsy news, stories from the community, and more.