I am new here, will you please help me?

[crlarne]

I have seizures due to a brain aneurysm surgery. I do not have convulsions. My seizures are a tinging on the right side. Before the surgery my right side became numb. My vision blurs, I want to sleep all the time. It is not I am sleepy I need a nap, it is I am so sleepy if I don't lay down I am going to fall down. I have a swishing in the head, that sounds like someone swishing a broom across cement. I told my surgeon, he said "oh that is just your brain moving around". I was put on 100mg dilantin three times a day. In September 2007, that medicine was changed, my drugstore could not get it from the same company, they quit making it. It was a capsul white on top, red on bottom. They gave me a white capsul on top and orange on bottom. I called and was told Pfizer was the maker now. I have had trouble since then. My doctor changed me to Topamax. One a day and one dilantin a day. At first it was wonderful, then the same symptoms started again. They uped the tomamax to 50mg. that made it worse. Then they had me to go back to dilantin, 100mg three times a day. I am having a hard time with all of the symptons, and now I have some kind of tingling all over my body, neck and face. Some times a place on my neck or face will itch of feel like a pin is sticking me. I can just touch it and it goes away. My dilantin level is 19. I have to go to the doctor, but wondered if anyone is having trouble with the new dilantin, and have any of you had these symptoms.

[brain]

crlarne!

Welcome to CWE! I've posted about
the new Dilantin many times, and I
will post about it again below ... and
make yourself a home!



Dilantin has a NEW COLOR & NAME!

It is no longer Dilantin Kapseals any
more.

Gone is the white with orange middle
band. And the Kapseals is gone too.


DILANTIN - OLD & NEW

100-mg (clear) Kapseal -- Original to be discontinued
Capsules with an orange band


100-mg New look -- to replace Kapseal
Capsules half orange and half white

Medication alert – Why the new Dilantin® 100 mg. Capsules?

[crlarne]

Have you had anyone have the tingling all over from the new dilantin? The rest of my symptoms are what I had before I got on the dilantin.
thanks

[alivenwell]

I've heard that fillers can vary from one pill to another. Because of that, I do not take generics at all. Generics have various different fillers and the medication can vary ever so slightly, but its variation and/or filler may make a difference in how much is absorbed into your system.

Could it be that the new capsule has a different filler? I'm not sure where to find that out.

I used to take the old capsule of this drug with no problems like you described. But, I also had to take the generic version of this stuff because I couldn't afford the brand name.

This sounds like neuropathy.

[Bernard]

Hi crlarne, welcome to the forum.

My wife has had the tingling in the extremities because of phenytoin toxicity, but it almost always after returning home from the ER/hospital where they pumped her sky high with Cerebrex (~liquid Dilantin).

300mg/day is not that much Dilantin. Have you had your liver checked to make sure it is working properly?

[crlarne]

thanks, another thing I was wondering about. My dilantin is in a capsul white top and orange bottom. The picture I saw of the new dilantin is white with a orange band. mine is brand name, thanks

[crlarne]

Sorry. I went back and looked at that picture. My old dilantin was white on top and red on bottom. It was supposed to be brand, and my new one is white on top and orange on bottom. I had no problems until the change in September.

[Meetz1064]

Hi there, and welcome to CWE!!!

Follow this link: http://www.pfizer.com/products/rx/rx...t_dilantin.jsp

It will take you to the home page of Dilantin. you can find out quite a bit there. The 2d link takes you to a letter that shows the old and new Dilantins like Brain showed you, too.

http://www.pfizer.com/files/products...terHCP_D01.pdf


Please note, if you are lactose intolerant, Dilantin DOES have lactose as part of its filler. Personally, I haven't been on Dilantin in a few years now.......

Please stick around, and keep us up to date, OK?

Take care,

Meetz

[crlarne]

Should not have neuropathy. When these things first started, I had just gone to the doctor and he had done a chem 24, and everything was great. Then the problems I descrbed in the first note started. I went to the neurologist and he changed me over to topamax. That did not work so back to dilantin. I had my blood level checked and it is 19.2. Can that be toxic?
thanks

[Meetz1064]

Toxicity of Dilantin is rare at 19. Usualy it has to be a lot higher than that. But if memory serves me, Dilantin is one of the meds that you want to stay away from grapefruit & oranges while taking it..........especially the juices. They are notorious for making your body think that the med is toxic when it's really not...........

[alivenwell]

I read the link that has the two pictures in it as well as the comments from Pfizer. One thing caught my attention: the 30mg dosage is not changing (maybe its filler is also not changing?). I'm not sure if they mean the appearance or content of that pill. If it's not the content (they kept the old filler ), then maybe your dr can give you 90mg (3 of the 30mg) instead of the 100mg. That may also help potential toxicity.

Drug insurance might cover the 30mg differently. I take mysoline in two dosages and the insurance company only covers my smaller dosage taken twice a day and my higher dosage 4 times a day.

[crlarne]

If you are not on dilantin, what are you taking? They tried me on topamax, but I really had problems with it.
thanks

[crlarne]

good idea. I will call my drugstore tomorrow and ask about the 30mg. I have to make an appointment with the doctor, but would like to know about the 30mg first. I have had a terrible time since september. Life should just not be like this. All of you guys are so wonderful. Thank you so much.

[alivenwell]

I've been taken off dilantin 20 years ago (I took it with phenobarb). It was considered one of those risky drugs for a pregnancy that could cause cleft palate/lip.

I'm currently taking lamictal and mysoline. Mysoline metabolizes into phenobarb. I'm not sure how lamictal works, but it helped me control my seizures completely. The bad side of these 2 drugs is the incredible cost. Without drug insurance I'd be paying close to $800 a month.

[brain]

Have you had anyone have the tingling all over from the new dilantin? The rest of my symptoms are what I had before I got on the dilantin.
thanks

Dilantin - Brand Name

Phenytoin - Generic


Which are you in reference to?

Generics have variations in formulations
while a Brand Name have a set formula.

This can cause people to be confused,
when one mentions a BRAND name
when they are actually taking a
GENERIC - and it can cause confusions.

For example:

I used to take GENERIC of ZONEGRAN
which is ZONISAMIDE, which I tolerated
it very well; until I think 11 different
manufacturers came along and there
became different producers of it, and I
just could not tolerate the variations of
the Zonisamide formulary differences.
I had to be reverted to the BRAND -
ZONEGRAN because of the proper
formula.

I had no problems with Zonisamide for
a long time until that came along ...
I couldn't post around and ask people
if they had problems with Zonegran
when it wasn't Zonegran to begin with,
it was Zonisamide, the Generic.

NOW - Being on ZONEGRAN - if I had
problems with the BRAND - I can
post that issue if there were a problem,
but since I don't. I have no need to
post anything.


Am I making sense in perspective and
clarity?

There is only but ONE BRAND, but you
can have (unfortunately) MANY GENERIC
PRODUCERS out there and the
FDA allows a percentage of fluctuations
to a degree and percentage, which can
be problematic. Cheaper isn't always
better.

[crlarne]

I always stick with brand name because of variations. I have never took a gernic in any meds.
Thanks

[crlarne]

I went to the website that talked about the different dilantins. How can you tell they did not change the 30mg. I called my drugstore and they said pfizer bought all of davis. thank you

[alivenwell]

I'm not a pharmacist, but I found something on the FDA site about dilantin(s) in something called the 'Orange' reference. Why orange? Heck, I have NO idea.

Parke Davis has therapeutic code 'AB', but Pfizer does not have that code. Code 'AB' next to it indicates it is therapeutically equivalent to the original drug. That makes sense 'cause Parke Davis originally made the drug. This was a search on the proprietary name 'dilantin'.

If I search on just 'phenytoin sodium' it makes a lot more hits:

Most of the generics also have code 'AB'. It says 'Wockhardt' and 'Wockhardt USA' manufacture generics of the '100mg extended' and '30mg extended' dosages.
There's another manufacturer called ''IVAX" that provides 'prompt phenytoin sodium'. The code 'BX' indicates this is not therapeutically equivalent.
I'm not sure if 'prompt' is equivalent to 'extended'.

Here's a search on 'phenytoin sodium':
http://www.accessdata.fda.gov/script...YTOIN%20SODIUM

Just enter the full drug name in the top search field.

I would imagine switching from one manufacturer to another like Pfizer could make a difference.

[crlarne]

Thanks, I have been doing a lot of reading today and have found everybody is having trouble with the new dilantin. Only one person reported no problems, but he had only been on it three weeks. Believe me he will have problems. Why don't we all write pfizer and demand they use the same formula Davis used?

[BuckeyeFan]

Also check into the MYLAN BERTEK version of phenytoin. It is called Phenytek and I have been on it for 4+ years. I was switched from dilantin to Phenytek with no new issues. I have never taken the generic.

The effective range for dilantin is 10-20, so your 19+ is on the high side. I have worse side effects at 18+.

Hope this helps.