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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 (and why the is the price so high?

Submitted by mw on Sat, 2011-10-29 - 12:40

Lamictal is a decent drug.  Nothing has "stopped" my seizures but lamictal has fewer side effects than most.

A few things to note

1)  Why is lamictal so expensive?  Because we need it and big pharma can hold people who "need" a drug hostage - It's the American way

2)  Personal experience - I think Lamictal works better than the generic equivalent (personal opinion).  That shouldn't be the case but many people (not all) will back me up on that observation.

3)  Expect to shed some hair on Lamictal.  The reports suggest only about 1% experience that - virtually everyone I've talked to has experienced some hair loss.  You'll notice it during titration but it's never stopped for me.

 

Anyhow - I hope it works for you and fully stops your seizure activity. 

Lamictal is a decent drug.  Nothing has "stopped" my seizures but lamictal has fewer side effects than most.

A few things to note

1)  Why is lamictal so expensive?  Because we need it and big pharma can hold people who "need" a drug hostage - It's the American way

2)  Personal experience - I think Lamictal works better than the generic equivalent (personal opinion).  That shouldn't be the case but many people (not all) will back me up on that observation.

3)  Expect to shed some hair on Lamictal.  The reports suggest only about 1% experience that - virtually everyone I've talked to has experienced some hair loss.  You'll notice it during titration but it's never stopped for me.

 

Anyhow - I hope it works for you and fully stops your seizure activity. 

Re: Dilantin to Lamictal (and why the is the price so high?

Submitted by keaze on Wed, 2012-01-18 - 23:31

Both the brand and generic have the same active dosage.  The only reason people say it works better is because they first take the brand, then start taking the generic because brand was too costy, and they get breakthrough seizures.  That's only because their body hasn't had time to adapt to the generic.  If you start on generic  it works exactly the same as brand.

I'm on generic and it's working just fine and I barely have any side effects.  Had insomnia the first few weeks and it's now gone.

Both the brand and generic have the same active dosage.  The only reason people say it works better is because they first take the brand, then start taking the generic because brand was too costy, and they get breakthrough seizures.  That's only because their body hasn't had time to adapt to the generic.  If you start on generic  it works exactly the same as brand.

I'm on generic and it's working just fine and I barely have any side effects.  Had insomnia the first few weeks and it's now gone.

Re: Dilantin to Lamictal (why is the price so high??!!)

Submitted by phylisfjohnson on Sun, 2011-10-30 - 12:49

I too was on Dilatin. (Which you know is available in generic form.) It is considered less effective to some because it is the oldest and first classification of meds. The theory is that drugs have come a long way from there. (By the way, you can get Stevens-Johnson Syndome just as easily from Lamictal as Dilantin, that's why they titrate you so slowly.

I'm now on Lamical (generically known as Lamotrigine) and I've had great success. Some complain of cognitive impairment and memory loss, but for you, after Dilantin, that should be a breeze!

Here are two sources for saving money on your meds:

RxSavingsPlus: A free drug/prescription discount card, to help lower the price for medication. It can be used at CVS Pharmacy, Target, Rite Aid and 60,000 participating pharmacies nationwide. And offers an average of 20% off the retail price of drugs.

Rxhope.com: A patient assistance company partially funded by the pharmaceutical manufacturers. It promises to speed requests for no-cost medications. The website includes information on which medicines are covered by assistance programs.

(I'm sorry, I can't give you the links or else this will be blocked by the spam filter.)

Hope this helps. Good luck. 

Phylis Feiner Johnson

www.epilepsytalk.com

I too was on Dilatin. (Which you know is available in generic form.) It is considered less effective to some because it is the oldest and first classification of meds. The theory is that drugs have come a long way from there. (By the way, you can get Stevens-Johnson Syndome just as easily from Lamictal as Dilantin, that's why they titrate you so slowly.

I'm now on Lamical (generically known as Lamotrigine) and I've had great success. Some complain of cognitive impairment and memory loss, but for you, after Dilantin, that should be a breeze!

Here are two sources for saving money on your meds:

RxSavingsPlus: A free drug/prescription discount card, to help lower the price for medication. It can be used at CVS Pharmacy, Target, Rite Aid and 60,000 participating pharmacies nationwide. And offers an average of 20% off the retail price of drugs.

Rxhope.com: A patient assistance company partially funded by the pharmaceutical manufacturers. It promises to speed requests for no-cost medications. The website includes information on which medicines are covered by assistance programs.

(I'm sorry, I can't give you the links or else this will be blocked by the spam filter.)

Hope this helps. Good luck. 

Phylis Feiner Johnson

www.epilepsytalk.com

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