Dilantin 30 Mg capsules

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Has anyone else changed from the older Dilantin Kapseals ( white with band in middle) to the newer Dilantin capsules, either the 100 mg or 30 mg capsule? Did you have any side effects or increase in seizures after the change? Did you take precautions like avoiding driving after the switch, frequent blood monitoring? If so, for how long? I have taken Dilantin for 20 years. It was prescribed after I had a focal seizure. I also had a grand mal seizure as a child and untreated seizures as an infant. When the 100 mg Kapseals were no longer available I switched to the 30 mg Kapseals and have been taking seven each night. Now those are no longer available and I must switch to the newer 30 mg capsule ( half pink, half white) soon. I am very scared because I read that it might be absorbed differently causing seizures. I have not had a seizure since starting Dilantin and I drive everyday. I would love to hear from others what their experience has been, both good and bad. Thank you.

Comments

Re: Dilantin 30 Mg capsules

Submitted by tcameron on Fri, 2011-01-21 - 19:47

Hi Joanne,

Make sure your epileptologist writes "no substitutions" on your prescription or you will get the generic. Your epileptologist is only an hours drive and you're complaining? Compare that to an all day trip to mine because I have to use the local paratransit. Most of us can't drive; you're lucky your seizures are under control.

In case you didn't know: The FDA allows 25% difference in how much a drug is metabolized for generics. That's not just 25% between generic and brand name; it's also 25% between generics. The pharmacy isn't required to tell you if they've switched from one to the other. The cost difference between Dilantin and phenytoin is $4.00/month. Compare that to $4k for one night in ICU. Make sure to check your prescription for every refill. My pharmacy changed my Dilantin to phenytoin a couple years ago, even though my prescription has "no substitutions". Take care of yourself, enjoy your hours drive to your epileptologist, and be happy you're getting the best care available. - T

P.S. Enjoy your meeting with the epilepsy support group. Some meetings are boring; others are facinating.

Hi Joanne,

Make sure your epileptologist writes "no substitutions" on your prescription or you will get the generic. Your epileptologist is only an hours drive and you're complaining? Compare that to an all day trip to mine because I have to use the local paratransit. Most of us can't drive; you're lucky your seizures are under control.

In case you didn't know: The FDA allows 25% difference in how much a drug is metabolized for generics. That's not just 25% between generic and brand name; it's also 25% between generics. The pharmacy isn't required to tell you if they've switched from one to the other. The cost difference between Dilantin and phenytoin is $4.00/month. Compare that to $4k for one night in ICU. Make sure to check your prescription for every refill. My pharmacy changed my Dilantin to phenytoin a couple years ago, even though my prescription has "no substitutions". Take care of yourself, enjoy your hours drive to your epileptologist, and be happy you're getting the best care available. - T

P.S. Enjoy your meeting with the epilepsy support group. Some meetings are boring; others are facinating.

Re: Dilantin 30 Mg capsules

Submitted by Joanne J on Fri, 2011-01-21 - 23:10

Hi T, Yes, I agree, it is unbelievably short sighted to prescribe generics for a medication with a narrow therapeutic range, especially since the bioequivalence standards are so broad and the consequences so serious, both in terms of cost and the effect on our lives. I've been so worried about the newer Dilantin because I have heard it being compared to a generic by my neurologist at Kaiser. I had also heard that the new Dilantin was approved by the FDA's generics division. I read that some people had blood levals too high or low and had seizures and other side effects. It was very reassuring to hear that you noticed no difference between the new and old Dilantins. I realize how fortunate I am that my seizures are well-controlled and I have been really worried that the new Dilantin might change that. I'm not sure I should drive in the weeks following the change. Although I can drive now I am very anxious and don't drive long distances or to new places. I usually get off the freeway as soon as I can and take the long route instead. But seeing an epileptologist will be worthwhile since I have so many concerns. Thanks again. Joanne

Hi T,                                                                                                                                                                                            Yes, I agree, it is unbelievably short sighted to prescribe generics for a medication with a narrow therapeutic range, especially since the bioequivalence standards are so broad and the consequences so serious, both in terms of cost and the effect on our lives. I've been so worried about the newer Dilantin because I have heard it being compared to a generic by my neurologist at Kaiser. I had also heard that the new Dilantin was approved by the FDA's generics division. I read that some people had blood levals too high or low and had seizures and other side effects. It was very reassuring to hear that you noticed no difference between the new and old Dilantins. I realize how fortunate I am that my seizures are well-controlled and I have been really worried that the new Dilantin might change that. I'm not sure I should drive in the weeks following the change. Although I can drive now I am very anxious and don't drive long distances or to new places. I usually get off the freeway as soon as I can and take the long route instead. But seeing an epileptologist will be worthwhile since I have so many concerns.                                                                                                                    Thanks again.                                                                                                                                                                Joanne 

Hi T, Yes, I agree, it is unbelievably short sighted to prescribe generics for a medication with a narrow therapeutic range, especially since the bioequivalence standards are so broad and the consequences so serious, both in terms of cost and the effect on our lives. I've been so worried about the newer Dilantin because I have heard it being compared to a generic by my neurologist at Kaiser. I had also heard that the new Dilantin was approved by the FDA's generics division. I read that some people had blood levals too high or low and had seizures and other side effects. It was very reassuring to hear that you noticed no difference between the new and old Dilantins. I realize how fortunate I am that my seizures are well-controlled and I have been really worried that the new Dilantin might change that. I'm not sure I should drive in the weeks following the change. Although I can drive now I am very anxious and don't drive long distances or to new places. I usually get off the freeway as soon as I can and take the long route instead. But seeing an epileptologist will be worthwhile since I have so many concerns. Thanks again. Joanne

Re: Dilantin 30 Mg capsules

Submitted by tcameron on Sat, 2011-01-22 - 15:46

Hi Joanne,

A Kaiser neurologist? I'm not fond of Kaiser. Do they have an eilepsy center? Make sure you see the best epileptologist in your area. You have a good reason not to drive. Your body needs time to 'reboot' and adjust to new AEDs; side effects, etc. I always expect at least 3 or more extra seizures the month following any AED change. Perhaps you can get a ride to your epileptologist. Even if it means taking the train, and the local bus routes; it's worth it! So what if it's an all day affair? Make it a day for yourself to enjoy.

If you DO experience a seizure, please tell your neurologist! I know, it's frightening, since she'srequired to contact the DMV, but she can't treat you if she doesn't know the drug isn't working. None of us like losing our independence by losing our driver's license. I got into an accident on a small road in '92. Hit a telephone pole. Only car damaged was mine. But the driveway next to it was to a preschool! I could have killed a child! That's manslaughter, or 3rd degree murder. That could mean prison time, to say nothing about the guilt I'd carry through the rest of my life. That's what frightened me to start seeing an epileptologist at Stanford. He's the head of the epilepsy center, but we still can't control my seizures. Surgery isn't an option, however, I have faith that they'll come out with the magic pill, or menopause might control them. Getting near that change-of-life time.

This is a personal question, but what part of CA do you live in? Take care, T

Hi Joanne,

A Kaiser neurologist? I'm not fond of Kaiser. Do they have an eilepsy center? Make sure you see the best epileptologist in your area. You have a good reason not to drive. Your body needs time to 'reboot' and adjust to new AEDs; side effects, etc. I always expect at least 3 or more extra seizures the month following any AED change. Perhaps you can get a ride to your epileptologist. Even if it means taking the train, and the local bus routes; it's worth it! So what if it's an all day affair? Make it a day for yourself to enjoy.

If you DO experience a seizure, please tell your neurologist! I know, it's frightening, since she'srequired to contact the DMV, but she can't treat you if she doesn't know the drug isn't working. None of us like losing our independence by losing our driver's license. I got into an accident on a small road in '92. Hit a telephone pole. Only car damaged was mine. But the driveway next to it was to a preschool! I could have killed a child! That's manslaughter, or 3rd degree murder. That could mean prison time, to say nothing about the guilt I'd carry through the rest of my life. That's what frightened me to start seeing an epileptologist at Stanford. He's the head of the epilepsy center, but we still can't control my seizures. Surgery isn't an option, however, I have faith that they'll come out with the magic pill, or menopause might control them. Getting near that change-of-life time.

This is a personal question, but what part of CA do you live in? Take care, T

Dilantin 30 Mg capsules

Comments

Re: Dilantin 30 Mg capsules

Submitted by tcameron on Fri, 2011-01-21 - 19:47

Re: Dilantin 30 Mg capsules

Submitted by Joanne J on Fri, 2011-01-21 - 23:10

Re: Dilantin 30 Mg capsules

Submitted by tcameron on Sat, 2011-01-22 - 15:46

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