Moving from Dilantin to Keppra

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tarheel

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I hope this is the place. My dr. wants me to go from dilantin to keppra. I have been on dilantion for 25 years and only have a seizure if I am off of it for 2 weeks which I tried in 1996 so my doctor wouldn't take me off of it which was his plan then. Perhaps I am luckier than most others but I am scared to change. I am sure if any of you went seizure free while on your medicine for years you may understand. If it isn't broke - why fix it. I travel for work, drive, fly, etc. and if I have a seizure during or after this transistion I will go crazy, especially if I kill someone via a motor vehicle.

I need info from those who have switched from Dilantin to Keppra. I have been on Dilantin so long I don't know if I even have side effects or better put they have been a part of my life I haven't realized them yet.

Now I take 400mg per day of dilantin and I will switch to 300mg perday and start Keppra, slowly increasing Keppra and decreasing Dilantin each week.

Another problem is that Keppra is so expensive. My dr is giving me a card for a year's discount but from what my wife told me it is 2 or 3 times the cost. I haven't seen the dosage level of Keppra as it was not on the prescription and the pharmacy has to get it from the doctor.

I'd appreciate any feedback.
 
Dear Tarheel,

There is now a generic Keppra. With the health care plan (Blue Cross/Blue Shield Pennsylvania) I have it runs $13 for a months supply. However, I have requested my neuro to have the brand name since generic Keppra 500 mg can run anywhere from 400-600mg per tablet. The cost for a month's supply runs me $46. I think this is well worth the cost. I was on Dilantin for over 30 years. Side effects were high pulse rate, high blood pressure, borderline hypothyroid (needed to take meds for the thyroid and BP) and tooth sensitivity. My neuro tried a combination of medical cocktails and the result was I was in la la land for about two months Jan-Feb 2008. We finally found a mix that works great for me. 500 mg Keppra in the morning along with 32.5 mg Phenobarbital ($4 for a month) and 1000 mg Keppra and 4 Phenobarb tablets in the evening. Since March 2008 I have been seizure free. Thanks be to God. As I was weaned from the Dilantin I was scared to death to have a seizure. The last Dilantin pill I took, March 2008, I had a seizure in which I was aware of what was going on. Very unusual for me. Since I was already under doctor's care it did not have to be reported to the commonwealth of Pennsylvania and I didn't have to start the six month wait all over again. Check with your doctor but in Pennsylvania if you are under a doctor's care and he changes the medicine and you have a seizure they don't have to report it. I had a seizure in December 2007 which started the change over to another mix. My neuro did advise me Keppra is not meant to be monotherapy drug and should be used with another anti-seizure med. All the problems I had with my health have disappeared. I was able to quit taking BP med and thyroid med. My tooth sensitivity has disappeared. All in all it was a great change for me. Make certain you have a long talk with your doctor or specialist about all the effects of Keppra. One side effect seems to be a lack of sex drive. However after about six months it seemed to return but not as strong. Of course this drug will react differently for others. This is my experience. I sure hope it helps you out. I know the problems with not being able to drive and having to count on others. I think I also may have had some minor depression but that would have been from being stuck out in the country and no where to go. I like to be active. Being in a Zombie state for two months I didn't care what was going on. Now I am active, driving and I am careful to take my meds.

Please keep us updated on how you make out.

Sandee
 
thanks for the reply Sandee

Thanks for the info. I am glad you are off BP medicine as that stuff can cause adverse side effects. Was there anything else you noticed that changed or anything others noticed? Immediate and over time?

My memory is good, according to my boss's wife but my wife may disagree with that. I remember things at work even if it was years ago. My blood pressure is normal, pulse, is too. No problems with tooth sensitivity. I do have problems with immediate memory like names or such but that may be an age thing. I do have a problem sometimes concentrating, like reading something more than a page. But any side-effects I have had, knowingly or unknowningly, there is always the alternative - seizures. That's the way I have looked at it all of these years.

My doctor is a neurosurgeon. He has only mentioned me taking it by itself except during the transition but the fact that my epilepsy is mild that may be the reason.

Thanks for the sex drive comment, I think I can use that to my advantage in several ways. So far the only things I have experienced that change/alter my sex drive are illness and the word NO.
 
I have frontal lobe epilepsy so that may be the difference. Have you checked out Keppra's website. It is interesting to see how Keppra works in your brain.

I'm glad you didn't have any side effects. It was a pleasure to be able to go off two extra meds!

Hmmmm, I used the sex drive comment to forewarn you not for you to take advantage ;)
Keep your sense of humor and you will be just fine.

I have memory problems but my friends tell me they are senior moments. Heck, I've had that since I was a senior in high school! I doubt the Dilantin causes memory loss. I am terrible with names. So now I just admit it and have the person repeat their name for me. Funny thing is a lot of times they admit to having the same problem!

You sound like you are in good hands. Don't be afraid to ask questions. It's your health.

My husband does a lot of traveling for his job too. Any chance you are in the railroad industry??? He is a metallurgist for a company that makes axles and wheels for trains. I've learned more about wheels than I ever wanted to know.

Good luck!
 
No, not into trains.

Yes, I have checked the Keppra website. That is what scared me. It's like those commercials on TV. After they tell you all the side effects you figure you are better off having what you already have.
 
Hi tarheel, welcome to the forum. :hello:

There are lots of people who manage quite well with Keppra. The most common side effect is strong moodiness/irrational emotions and that can be mitigated to some extent with vitamin B6 supplements.

Are you showing any of the problems associated with long term use of Dilantin (loss of bone density, gum/teeth problems, etc.)?
 
Welcome!
I am a newbie, just diagnosed last year. I have simple and complex partials and have been only on Keppra (no other drug) for past 7 months. I think my seizures are mild. I have been seizure free for 4 months! Keppra is one of the better drugs when it comes to side effects and long term effects. But just like our seizures, the meds affect or don't work for us all the same.
Do discuss the generic option with your doctor. Some on here are doing fine, but my pharmacy changed me to generic in December. I got terrible migraine and after a week, they put me back on Keppra. Some others on here actually had seizures on the generic. I am going to see my neurologist next week and I am going to ask about the new Extended Release Keppra that just came out.
I am in Texas...doctors here cannot report seizure activity to DPS. Each state varies.
This place is a godsend...great for getting information or even just venting. Glad to have you join us.
Jen
 
Bernard and jgbmartin

With regards to switching. About 20 years ago, 5 years into my Dilantin I went to Austria for work. Well I stayed longer and ran out. With a translator I went down to the pharmacy. After a long dialogue and medical dictionary references the pharmacist knew what I needed. He gave me these pills in tablet form on sheets of foil on one side and plastic the other. I guess I got lucky because I made a dramatic switch and had no problems. Today, I don't remember what it was but drugs used are not the same between continents and countries. What I do remember is the price, about 50-70schillings (4-6 dollars).

Bernard, Yes I know of the gum and bone part. I believe that is my Nuer. reason as he has mentioned that from time to time as a long term affect. Is the irrational emotions/moodiness occur with stress or if for example my wife, friend, or co-workers asks me a simple (streeless) question? There have been times I have become irritable and I wonder if it is the Dilantin or just life in general.

Jgbmartin. I guess I am lucky. If I were to say 7 months free I would not be a happy camper. It has been over 10 years for me since my last seizure and that was after being off of Dilantin for two weeks. That is what I am afraid of. Plus the cost is almost double -- My Neuro said no to the generic at this time. At the present I believe there is some difference with the generic which may change later. I pay for my medical and it doesn't cover prescriptions and it will cost me 145 per month compared to under 60 for dilantin. The first year I will get 30 off each month.

According to Bernhard and others I may get a form of PMS with Keppra. A little payback to my wife. But I'd rather not have that happen as I love my marriage.

Thanks to Sandee and Bernard I may have a couple of aces for my wife.

At the present I just recovered from a bug that has been going around so that is the first reason I haven't started. Although I have never had a seizure when ill but just as a precaution.

I guess the way to look at it is look forward to my new personality, whatever that entails - good or bad.

Thanks for the input.
 
I do get the kepprage...it makes your moods very extreme. If I get sad, it is the very depth of sadness. If I get angry, it is over the top mad. My son lives with me and he has gotten use to it. And quite honesty, it not ever day like it was in the beginning.
I know a lot of people on her take B6 supplement to help with kepprage, but my doc said not to. He told me anything more B6 than what is in multiple vitamin is too much and could do permanent damage.
Best of luck with the change, let us know how it's going. And if you get the kepprage, we are here for you to vent.
I am new to the seizures, so it is a HUGE deal for me to stay seizure free for this long. Also, the doctor started me on a low dosage for the first three months to build me up to the 750 mg 2x a day.
 
Tarheel,

I fogot about having problems with bone density. My bone density was decreasing and at 46 I was diagnosed with osteopenia. Pretty young for bone density problems. Since I switched to Keppra I have not had any more bone loss. Had a Dexa scan and it is stabilized.

I know the switch is a big scare but the long term effects are not worth it. Yea, you can use your male PMS on the wife. Thank goodness I have the world's most patient and loving husband. It's was an adjustment. But in the long run it is a good adjustment for me.

Check with your state health department and see if there are any prescription plans or possibly discounts you could get for using the Keppra. It's worth a try.

AND when traveling anywhere always take your meds in the container they come in. I have been overseas quite a bit and make sure I have more than I need. The difference in meds or availability could be a problem. The same med could be known under a different name.

Austria, ah, my grandfather was Austrian. He married a French woman. Mom spoke Austrian to him and French to her mom.

Good luck to you!
 
Hi "North Carolina Fan" (at least that is what I presume from your name)

It sounds like we might be about the same age. I am a 47 year old guy with E since I was 20. I have been on dilantin that entire time. I always had break through seizures (tonic-clonics/grand-mal) every year or so until I found a new neuro 5+ years ago. He added Keppra to my dilantin as an adjunct. He did not use it as a replacement. It was VERY effective for me.

It is my understanding that keppra is to be used as an adjunct for TC seizures, but may be used alone for other types of seizures. It uses a different receptor to block seizures and thus is a great adjunct.

Yes, I have had side effects with the keppra. Mostly emotional early on and then over the last year, a lot of attention, focus, and memory issues. My neuro believes that my body has ran its course with the keppra after 5+ years and is slowly switching me to lamictal. I won't knock keppra though because it bought me 5 years of freedom from TCs.

I definitely understand your nervousness. I have been able to drive most of the last 27 years, but am temporarily suspended right now ruding the change over. I am lucky enough to be close to work and have a supportive spouse to help along the way.

Best of luck to you! Visit here often and join in on the fun posts as well as the supportive ones. I find the laughter to be great medicine.

:cheers:
 
Sandee,
I am 48 and got diagnosed with oestreoposis last year, got -3.6 on hips/spine. They had thought after having such a bad fall and injuring my arm to the point that I almost lost my arm altogther, that I probably did have it before my fall in 5/2006. But they were addressing the serious issues at that time and waited until I got better to find out about it. I have only been on Keppra a few months. Boy I hope my bones improve with the Keppra too as I am unable to tolerate the oestro meds during to bone pain. Does your dr think it is the Keppra inmproving your bones?
 
Doctor didn't say it was the Keppra improving the bones. Did say the Dilantin robbed the bones of calcium. I take a calcium supplement and multivitamin. I haven't gained any bone density but I haven't lost any more. Each time they did a Dexa scan seemed to be a slight loss while I was on the Dilantin. This year, no change. I think Dilantin is alright for short term use but long term there are so many problems. I am 50 and would like to not lose any more bone density. Sorry to hear about your fall. Had a fall down a flight of stairs, May 2008, and I am still recovering from it. Spent almost 4 months in PT plus had to have my shoulders manipulated. I think muscle pain is the worst because nothing I take helps. The muscles have to repair themselves. Unfortunately the minute I feel good I start moving things and lifting things I shouldn't. Oh well. I think Keppra is the best drug for me. I take it combined with Phenobarbital. An oldie but it works. Don't want to do anymore changing for a long, long time. Hope all works out for you.
 
sorry to hi-jack TarHeel's thread but i figured why post up a new one when i have identical concerns... and i've been seizure free for several years now on Dilantin so why make the switch?

this month i begin stepping off Dilantin to generic Keppra... one thing that stuck out at me in particular in this thread: "kepprage" .. oh no, i'm bad enough on Dilantin, am i to assume by that term that i should expect an increased irritability on Keppra than i already experience on Dilantin?

i'm already in therapy twice a week for PTSD and major depressive disorder, which i'm quite certain only exacerbates the aforementioned side effects brought upon by seizure meds.

please, i'd love to hear some good news :(
 
Switched from dilantin to trileptal a few years ago ..... because chronic use of dilantin had caused (this is what my neuro told me) cervical dystonia in my forties. I was told it was rare, but it happens.

The trileptal didn't work for me (sucked the sodium out of my body), but the keppra (generic form) is working great. Had to get used to it at first. Had trouble sleeping more than six hours a night the first few months, but that's better now. I must admit there are some mood swings at times, but they're not severe. Everyone reacts to the drug differently.

Best part is, with keppra, I have not had a muscle twitch much less a seizure! :clap:

Bottom line is, don't be afraid to make the switch. I took a couple of weeks off work to stay at home and get used to keppra. :banana:
 
Nightmare Switching from Dilantin to Keppra

i had been seizure-free for a little over four years on 500mg of Dilantin nightly; at the insistence of my neurologist, i began, back in November of 2010, slowly stepping off Dilantin onto Keppra.

back in February, while on the full dosage of Keppra (1500mg in the a.m., another 1500mg before bed along with still being on 200mg of Dilantin) i had a pretty bad seizure; the instruction i was given at that time was to go back to 300mg of Dilantin and stay with the full dosage of Keppra...

i wasn't due for another follow-up neuro visit until May then two nights ago, i suffered probably the worst seizure of my life, and there's been many.
post-dictal i was disoriented and literally flipped over my computer table, breaking my computer [on my wife's laptop now], and tossed a nursing glider across the room...

earlier in the evening, my wife kicked me out of bed for snoring too loud and keeping her and our 18-month old daughter awake and told me to go sleep in the spare bed... typically, i'd be grumpy over something like this but i believe in this instance she probably saved the baby from a bad injury or worse... jesus f'n christ... i can barely type this w/o losing it.

long story short, i'm surmising that Keppra is not going to work for me; again, my neurologist implored me to get off Dilantin because it wasn't an Rx that's meant to be taken over long periods of time due to the dangers it poses to one's liver, etc., but if i was seizure-free for over FOUR years on it then who the F- is my neuro or anybody to 'experiment' on me??

if it isn't broke don't fix it kind of thing, etc., is this doc on the Big Pharm payroll or what?

i'm feeling a lot of different negative emotions right now; i wrecked my own apt, destroyed my computer, smashed my face on something, breaking my nose, i'm covered in bruises presumably from where the EMT's wrestled me to the floor (i'm 6'1 185 lbs., not overly big/strong but apparently still a handful), Dr.'s weren't sure if i also suffered a mini-stroke because my speech is horribly slurred but it's been determined that the cause of that is because my tongue is so badly bitten up and swollen that i cannot properly enunciate.

in closing,
what, if anything, can be done to curtail violent post-dictal behavior?
is there anyone else out there who has controlled their seizures with Dilantin after Keppra has failed them?
does anybody else feel like throwing themselves off a bridge at times like these???

i'm doing two shrink visits a week currently... i need insight, i need help, please, i don't want to f'n die over this but i sure feel like i want to right now.
 
Hi Due Reflection, welcome to CWE!

I'm glad you've joined us, though I'm sorry for the circumstances. I understand your ambivalence -- I was basically fine on Dilantin, but my neurologist was really keen on putting me on her fave drug, Lamictal. I eventually went ahead and made the transition because after an increase in dosage, the Dilantin was starting to affect my gums, and because of the risk of osteoporosis from long-term use.

I'm sorry the Keppra has had such horrible results. Keppra's well-known to cause moodiness and anger ("Kepprage"), so it may well be exacerbating the post-ictal feelings you've been having. It sounds like it's a bad match for you neurologically and emotionally. Another drug should be considered, even possibly a return to Dilantin if you weren't having any adverse side effects on it. Definitely talk to your neuro about making a switch. You shouldn't have to suffer this way.

Some folks have found that taking a B6 vitamin as part of a B-Complex supplement helps with the Keppra moodiness. While you're figuring out your next step, you might want to give that a shot. (Check with your doctor first).

Best,
Nakamova
 
Hey Due Reflection,

I was on Dilantin as a kid, and what I've always heard from family and friends is that when I got off of it, it was like I woke up. Dilantin has a lot of bad side effects, gingivitis being one of the more mild. It really can sap your energy and make you foggy. Also, Dilantin has been shown to decrease bone density if you take it for a long time, so I would suggest getting a bone density scan.

It's scary switching meds, especially if you've been doing okay, but getting off of Dilantin is something I would recommend. I was on Keppra for a while, but now have switched to a combo of Lyrica, Lamictal XR and Vimpat. If the Keppra is not a match for you, tell your doctor - you need to be your own advocate. If you're looking for suggestions, the Lamictal XR and Vimpat have both been pretty good for me.

Good luck!!
 
people, thanks for the kind words, hugely appreciated.

only Dilantin side effects i was seeing were bad gums but compared to the way i'm feeling now i'll readily take bad teeth/gums over waking up in the hospital, repeatedly.

i'm due for a follow-up Neuro visit this coming Tuesday; maybe my body doesn't recognize/register the Keppra dosage in my system and is so used to Dilantin that it's causing me proｂlems... i really don't know if i have the resilience to be experimented on with the unknown vs. what has worked for me for consecutive years.

thanks again, people...

scott
 
I took Dilantin for 17 years and it worked fine no troubles. However, unknown to me it was having a negative effect on my bone mass. I had a bone test through my GP and discovered I my bone loss was enough to be classified as ostepenia.

As a 36 year old male, this was presumed to be because of my years of Dilantin usage. My neuro had never tested my bones and did not warn me about this at all. I had typical liver blood tests but that was it, and I thought everything was okay. That's the thing about Dilantin, you can think you are doing great, but it can quietly be wrecking your bones, liver, and/or your cerebellum.

From what I have heard, it is not good to take it for too many years. If you haven't already, I'd schedule a bone scan just to check this out, and I'd at least consider a move to another med to be a sound move.

I have been taking Keppra generic for a little over a month now. I feel drowsy, and mentally slow, and somewhat stumble footed. This is not all the time, but it will come on me at different times of the day. Other times I'm just fine. I've been told that you have to take it for awhile and see if the side effects subside, which I hope they will.

Dilantin was easier to take, no doubt, but I'm glad I got off of it. I honestly don't trust any of the drugs and even if things are working for awhile it's probably smart to change every 5 to 10 years and not stay on any one med too long. The truth is we just don't know the long term results on the newer meds yet.
 
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