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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 is the price so high??!!)

Submitted by David2012 on Tue, 2012-01-10 - 14:34

I too am on Dilantin (20+ yrs, 550mg/day, seizure-free for several years); and after trying to substitute 3 others, my neuro has all but given up asking me if I want to try switching again. (The only one he still mentions is Vimpat; but I agree it is too new and the jury is still out for me.) At separate times, I tried switching to Lamictal, Keppra, and Zonegran. None had any side effects, but none worked, either. We gradually worked up to the max dose of each, then slowly tapered off the Dilantin. As soon as I fell under 300mg/day, the seizures started again.

But it works for some people, I would give it a shot, especially if the Dilantin is not doing it for you.

The only med I had a bad side effects with was Topomax, which I was also on briefly. It is nicknamed "Dopomax" because it tends to slow you down; but the weirdest thing is it made everything taste bad! I could barely eat, and even a simple Coke tasted bad (and also flat!).

But from my research, these are really all add-on drugs; none, that I could tell, were "stand-alone" meds, like my Dilantin. So maybe these were not good choices for me anyway.

My insurance covers Lamictal, at the "Brand" copay; so not sure what it really costs, out the door. I do have a resource that suggests around $500 for 100 count 25 mg, so that is in the same ballpark as what you mentioned. The simple answer to why they charge so much? Because they can...

Good Luck!

I too am on Dilantin (20+ yrs, 550mg/day, seizure-free for several years); and after trying to substitute 3 others, my neuro has all but given up asking me if I want to try switching again. (The only one he still mentions is Vimpat; but I agree it is too new and the jury is still out for me.) At separate times, I tried switching to Lamictal, Keppra, and Zonegran. None had any side effects, but none worked, either. We gradually worked up to the max dose of each, then slowly tapered off the Dilantin. As soon as I fell under 300mg/day, the seizures started again.

But it works for some people, I would give it a shot, especially if the Dilantin is not doing it for you.

The only med I had a bad side effects with was Topomax, which I was also on briefly. It is nicknamed "Dopomax" because it tends to slow you down; but the weirdest thing is it made everything taste bad! I could barely eat, and even a simple Coke tasted bad (and also flat!).

But from my research, these are really all add-on drugs; none, that I could tell, were "stand-alone" meds, like my Dilantin. So maybe these were not good choices for me anyway.

My insurance covers Lamictal, at the "Brand" copay; so not sure what it really costs, out the door. I do have a resource that suggests around $500 for 100 count 25 mg, so that is in the same ballpark as what you mentioned. The simple answer to why they charge so much? Because they can...

Good Luck!

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

Submitted by scorpio on Wed, 2012-01-11 - 06:52

The relative costs of Lamictal and its generic version the 2009 accounts of the prescription costs of the National Health Service in the UK show a 100mg tablet of Lamictal costing £1.03 as compared to £0.09 for the generic, a ratio of ten to one (a sort of 'trade price').  Before the patent expired two or three years ago, most of the Lamotrigine prescribed by the NHS was in Lamictal form; now it is the generic that is most commonly used.

 The higher cost of the patent versions of a drug is due to the high costs of developing it, costs in R and D that later manufacturers do not have to bear.  The reason the brand version is still used is that it is different generic versions can vary a bit, one to another, in the way they are absorbed by the body.  As you have discovered, the price differential is considerable!

Chris

The relative costs of Lamictal and its generic version the 2009 accounts of the prescription costs of the National Health Service in the UK show a 100mg tablet of Lamictal costing £1.03 as compared to £0.09 for the generic, a ratio of ten to one (a sort of 'trade price').  Before the patent expired two or three years ago, most of the Lamotrigine prescribed by the NHS was in Lamictal form; now it is the generic that is most commonly used.

 The higher cost of the patent versions of a drug is due to the high costs of developing it, costs in R and D that later manufacturers do not have to bear.  The reason the brand version is still used is that it is different generic versions can vary a bit, one to another, in the way they are absorbed by the body.  As you have discovered, the price differential is considerable!

Chris

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

Submitted by jimmieD on Wed, 2012-01-11 - 13:29

hey i am on lamotrigine which is the generic version of lamictal, which actually could be cheaper for you, pharmacies have more generic drugs on their formulary, so i would ask your neuro bout that. i have been on lamotrigine for a couple months now ive had a few breakthrough seizures, i get simple partial seizures, but i am also on a low dose it can be a battle 2 find a drug that works for you. side effects from my meds are not as bad as the keppra, depressed, irratible, anxiety an gave me suicidal thoughts. so lamotrigine works great for me, my memory isnt as good as it used 2 be prolly from the meds but thats about it for my sideffects.

hope that helps

hey i am on lamotrigine which is the generic version of lamictal, which actually could be cheaper for you, pharmacies have more generic drugs on their formulary, so i would ask your neuro bout that. i have been on lamotrigine for a couple months now ive had a few breakthrough seizures, i get simple partial seizures, but i am also on a low dose it can be a battle 2 find a drug that works for you. side effects from my meds are not as bad as the keppra, depressed, irratible, anxiety an gave me suicidal thoughts. so lamotrigine works great for me, my memory isnt as good as it used 2 be prolly from the meds but thats about it for my sideffects.

hope that helps

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