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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\

Submitted by GALLSTAR70 on Tue, 2012-01-31 - 12:27
  • Dear annege read my story Gallstar70 where I revealed the importance of locating an Epilepologist they are very rare as here in Las Vegas there is but ONE Dr. Samir Bangalore He is wonderful!  My passed Neurologists never helped me as much.  He changed my meds and put me on Lamactal xr which has successfully lowered the frequency of petit mal seizures...Yes the kit  is expensive but well worth the resolution of passed ineffective meds.  I do not believe they are as expensive as you say i order mine through Medco. Try it...Again read my story where I have documented my history and as you my first medication was dilantin which caused inflamation of the gum tissue and did not prevent grand mal seizures since then I have been prescribed many combinations from Depakote  and keppra as well as lamictal xr which seem  to work best ever   Zonogram was helpful as well but it  has been dropped by this Dr..My triggers are heat understand yours and  obviously avoid them. I wish you well. jeffgall@cox.net 
  • Dear annege read my story Gallstar70 where I revealed the importance of locating an Epilepologist they are very rare as here in Las Vegas there is but ONE Dr. Samir Bangalore He is wonderful!  My passed Neurologists never helped me as much.  He changed my meds and put me on Lamactal xr which has successfully lowered the frequency of petit mal seizures...Yes the kit  is expensive but well worth the resolution of passed ineffective meds.  I do not believe they are as expensive as you say i order mine through Medco. Try it...Again read my story where I have documented my history and as you my first medication was dilantin which caused inflamation of the gum tissue and did not prevent grand mal seizures since then I have been prescribed many combinations from Depakote  and keppra as well as lamictal xr which seem  to work best ever   Zonogram was helpful as well but it  has been dropped by this Dr..My triggers are heat understand yours and  obviously avoid them. I wish you well. jeffgall@cox.net 

The insurance companies as

Submitted by April2016 on Tue, 2017-05-16 - 13:49
The insurance companies as far as what I have seen charge the difference between the brand name and generic. So that is about $500. This is different from the out of pocket cost. In my case it is $3000. They try to force you to take the generic and say it is the same thing. I wish the foundation could help us with this because it is stressful.  In regards to Lamictal I did get an unexpected rash on my legs but after a while it did go away. But still let your doctor know. 

I was switched from Dilantin

Submitted by Sonya68 on Thu, 2018-04-12 - 11:25
I was switched from Dilantin to lamictal several years ago and have been successful with it. If it wasn't for my insurance I couldn't afford it. 3 months I pay $87.00 but they bill the insurance over $4200. 

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