Changing from Dilantin to Generic Keppra

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dlg1027

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When I was an infant, back in the early to mid 1960's, I had a temp of 105 which ended up developing a scar on my right temporal lobe. Ever since that time, I've been diagnosed with epilepsy. In 2000, at the age of 38, my neurologist brought up about a surgery that was now available. Took me a year to make my final decision, but I went through with it in 2001 and have been seizure free ever since unless I have them during my sleep which I have no reconciliation of.
Just recently, I saw the same neurologist. He recommended that I switch from Dilantin to Keppra. Why you ask? Just cause Dilantin causes osteoporosis in the long run. I've read a lot on the side effects and all I hear are the bad. Does anyone out there have thoughts on going off Dilantin after 4.5 decades? I've been seizure free for 13 years now. I absolutely trust my neurologist, but you've heard the saying...."If it isn't broken, why fix it?" I would greatly appreciate some of your thoughts on going off Dilantin and starting on Keppra.

Thanks,, David
 
I work on my cars. I'm VERY familiar with that saying. :D

I'm on Keppra and I know lots of people here are too. Happy to talk to you about that.
I think your doctor is being proactive and thinking about your future. You're not 40 yet which means you have plenty of life to live. Why change the oil every 5000 miles when you can change it every 3000 and know it will be in better shape?
I really don't have a problem with Keppra, but the effects, in my case, really aren't bad.

Good luck with your decision.
 
AHAHAHAH!

I misread. Your doc brought up surgery when you were 38. Sometimes I read fast and the words get jumbled. :D

52? You got long enough, pops. :roflmao:
 
dlg1027 --

Have you had a bone scan done? The results might help with your decision...
 
dlg1027 said:
Does anyone out there have thoughts on going off Dilantin after 4.5 decades? ...."If it isn't broken, why fix it?"
Click to expand...

Hi David, I've been on Dilantin for 50+ years. It has controlled my seizures since 1998. I have a great GP who has told me more about the dilantin side-effects than any neurologist. Together we make adjustments to my dosage if needed should I start experiencing side-effects. Doing it together is really important to me.

My GP also monitors all the other potential side-effects and has me on lots of vitamins. As to the osteoporosis - I'm standing straighter and more balanced now than ever before.

Dilantin can also affect your gums, I had surgery done once 30 years ago. Then my dentist suggested using an electric toothbrush and my gums have been fine ever since.

Whenever I've seen a neurologist they always suggest moving to a newer drug. I refuse to because every drug has it's own side-effects. I know the side-effects with Dilantin and, together with my GP, we are dealing with them. I pointed this out to my neurologist and he said "you do have a good point there".

Another thing I like about Dilantin is the cost. I buy a years supply at a time, been doing this for 25 years. I can pay for it myself because the cost is only $800 for the brand name drug. From what I've read, other drugs can cost you that in a single month. Doctors don't realize the cost of medications.

Based on my experience I would suggest you stay with Dilantin. It works for you so, as long as you monitor the various potential side-effects, there is no good reason to change.

Hope that information helps and wishing you the best.
 
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No I haven't. Would you suggest getting one? My doctor didn't bring a bone scan up at all, so it didn't even cross my mind.
 
Were in the same boat Deloris having taken Dilantin majority of our lives and have been suggested to change meds. I should and want to trust my doctor, but just really don't know what to do at this moment. I tell myself, "NO rush to start it, if I'm going to, since I've been taking Dilantin for 40+ years. What's another few weeks or months."
 
Sleep, sleep....and more sleep.

March 16th will make it a year since I've been dealing with epilepsy and taking Keppra.

Besides reduced appetite, the only thing that aggravates me about taking it is the amount of sleepiness it brings. Ask your doctor about taking energy & B-vitamins while on Keppra.
 
Does epilepsy ever actually go away? Some people/places say they will, but other people/places say they will not but merely controlled via meds or no-meds. I'd love to think I was no-longer epileptic, but then my seizures are still around playing. Still it would be nice to feel down the road I was a non-epileptic.
 
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