Dilantin Kapseal 100 mg users

[Cindy Anderson]

The "Filler" that is in Dilatin (Magnisium sterate) was change in Canada in appronx.2002.This created a huge probled causing toxic effects even on subtheraputic doses.
Knowing that this was drug related I contacted pfizer in canada.It turned out that the plant that was supplying the drug had closed.The dilantin that was made at a different facility did not meet FDA approval at first.It evenually met approval under the very strict guide lines that the FDA impose.

I can not talerate this "coctail" and order the drug from the U.S.that seems to be a closer chemical fit to the origilal dilantin make in Quebec ontario Canada by Park Davis.

Is that particular coctail still available any where in the world, as it is the most effective.

Thank-you

C.Anderson in Canada

[Ruthie]

After finally getting my life together again after being switched from the name brand Dilantin to TARO brand Phenytoin, I found out today from my Kaiser doctor that Kaiser is now considering switching all patients who take name brand Keppra to the new generic version. Although i'm not opposed to taking generics and in fact, I am all for them if they work but, after the hell I went thru with the Dilantin change I have to admit I am a bit leary about yet another change. My Epitologist and internal med doctor are fighting to keep me on the name brand after the Dilantin incident but not sure how well that will go. If anyone out there has already begun taking the new Keppra and have had either good or bad experiences, I would truly appreciate any feedback. I'm still struggling with DMV over the Dilantin change and misdiagnosis of seizure rather than the aura I actually had so not real anxious to just tapper off the Keppra and loose my license for a year. I'm beginning to think this whole bull crap of epelieptis leading 'normal lives" is a bunch of bull as long as the FDA cont. to allow generic forms of anti-seizure meds.

[two aunts]

I have followed many of your comments (information) Thanks for being clear and concise. You must have folders full of info. Have you ever spoken with Tiffany Kenney a reporter from Florida. Pls. let me know

jerry1967 wrote:

So far I am doing ok on the new dilantin. But I do feel different that's for sure.
I also have wrote my senator and state senator. But I have come to the conclusion nothing is going to help us. Under the Freedon Of Information Act I believe you might get the information you want.
The FDA has information on complaints made to them you also might be able to find.
I think this is something we have to live with.

[two aunts]

Marcia I have just been going over Blogs and came upon yours - how is your son-in-law - thank you for posting info. At least your pharmacist had been informed, but only 30 days, seems Pfizer would have known more than 30 days. Pfizer just sent a letter to tell people FDA requested they change their manufacturing of Dilantin. This is now March 2009 and the first we've heard. What to believe!-

Marcia wrote:

Dilantin 100 mg Kapseals change
Like most of you I've also been concerned about this and have not been able to get a straight answer from anyone until today. I received a letter from my HMO telling me that the name brand Dilantin that I'd been taking for years would no longer be available and that they were going to ask my doctor's permission to substitute the generic the next time my Rx was filled. I called the pharmacist and he told me that YES Dilantin 100 mg Kapseals have been reformulated and that the generic is actually closer in formulation to the old Dilantin then the new one is. That leaves me and a lot of others up a crick because the generic does not work for me. He said that he had no idea why Pfizer would do this to a drug that is so widely used and not offer an explanation. And why would the FDA approve such a thing? He also said that they only had 30 days notice about this. His advice to me was to see my neurologist and if the new Dilantin isn't going to work for me to maybe try switching to another med. My son-in-law also takes Dilantin and he's been on the new one for about a month now. Friday he had a grand mal seizure while driving and a second one in the ER. Fortunately he was in a parking lot and he was going very slow and he wasn't injured and no one else was involved. Later in the ER he had another seizure. Because of state law he looses his license for 6 months now which is a huge inconvenience to their young family. We now know that this is directly related to the changed Dilantin. Scary!!

[jerry1967]

Yes two aunts I have spoken with Tiffany Kenney but I have not heard anything since I did speak to her.

[ella]

Tiffany wrote:

What the hell am I going to do?? I have been on Dilantin Kapseals for 29 yrs. I've had great success. In November 04' I went to the Pharmacy to pick up my regular dosage to find A generic Phenytoin, lavender and white, pill. I was a little nervous but they said it was the same thing. 2 months later I have a head on collision with another driver and we both end up in the Hospital. Totaled my car and have to pay for her damages as well. Thank God we're both fine. Of course in the mean time I lose my license for 6 months and my auto insurance skyrockets. Luckily, My medical insurance which is my hopital and Pharmacy, took full blame and I got my license back in 2 months instead of 6. So they put me back on Dilantin and every thing is great until last month when I receive a letter telling me Phizer is no longer making Dilantin and that the generic Phenytoin will work the same. I almost fell out of my chair. All I have left is 2 more days of the Dilantin pills and all they can get me is liquid form. I take 5 Tbls a day. Anyone know about the liquid form of Dilantin??

I am mystified about dilantin. Nobody told me it was a "new" dilantin. After 28 years on the old Dilantin I have had a seizure.
I am seeing the Doc. Tuesday, but meanwhile I am scared of these new dilantins called phenytoin Sodium. Why take them if I am goingto get a seizure anyway?

[Judy]

Hi Anne, Is your daughter still using the new dilantin or has she been switched to a new drug?

Ann PA wrote:

My daughter has been seizure free on Dilantin 100mg kapseals since August 1. On December 24 she refilled her prescription and questioned the pharmacist immediately about the 'new' pill. She was told it was Pfizer's change and it affected the shell only. She began taking it that day and on December 28 she had a seizure. On January 3 she had another and on January 7 yet another. Coincidence?? Pfizer wants to know all the details yet says the drug is the same. Has anyone else experienced any seizure activity

since the change? I was under the impression no changes were to be made to seizure drug administrations without a physician supervision. What happened to that?

[milehi60]

Found out today that Phizer has stopped making 30Mg Kapseal and replaced with 30Mg Capsule formulation, just what they did with 100mg back in 2007. Whats Up with Phizer. Letter came out in July 2009.

[Lynn]

I called Pfizer in October 2008. When I told the first pharmacist that I talked with that I had problems, she transferred me to another pharmacist. Most of her answers were, "No comment." I themn said, I know that you can have "no comment" but I wanted to say one thing and that was "I am an epileptic and a little change in the medicine can make a lot of difference."

[Lynn]

Thanks for the number for Pfizer. I did call last April but they could "not comment." I took the "new" dilantin 100's last year for nine months and felt that I lost nine months of my life. Then when I went to the doctor in September, he put me on all 30 mg. kapseals and in two days I felt fine. I figured a lot of others would do the same and I was right and when I got my prescription this month it was for the "new 30's. I tried to have a positive attitude but the next day I had the worst headache that I've ever had and the lids around my eyes burned. I have a few days of the "old" 30's left and then ......

[milehi60]

Called Pfizer today to complain about them discontinuing Dilantin 30mg Kapseals. Someone answered and said she was a pharmacist and attempted to explain why they discontinued 30mg. She did not have any answers, but said that all complaints are considered. She had me talk to another pharmacist who took a safety complaint. That was a joke. This department has been outsourced to India. I felt bad for the guy-He just could not understand all the information I was giving him. I encourage everyone to contact Pfizer. Call 1-800-438-1985.

[Patricia]

I just found this site today after searching for possible side effects from the new Dilantin. I have been taking Dilantin for over 25 years with no problems but in the last few months I have started having irregular heart beats, shortness of breath and feeling light-headed. I am nervous about driving again and have not felt this way for 25 years! I am beginning to wonder if this is a side effect from the new Dilantin. I will definitely bring this up to my Doctor. Is there a way to tell if it is from the Dilantin other than stopping it?

[gatorroof]

I take Dilantin 100 mg capsule P-D. Can anyone tell me if the capsule contains a pill inside or powder substance?

[gatorroof]

Also I take the orange and white capsule. Is this generic dilantin or name brand?

[Deborah Kumle]

I have been on Dilantin for 35 years, and over the last Year I have been itching and now my skin is burning and I have rashes all over. Pfizer claims the outer shell compound was changed, and the active ingredients stayed the same. However, all inactive compounds were changed. There lies our problem. Now, for those of who have eplilepsy we are forced to change due to a reaction.

Contact your congressman, senators. We need to see that no brand name Anti-Seizure drug is changed, and for that matter that all generic are banned.

[barbra form new tork]

today, oct.26th., 09, my 30 mg capsules of dilantin have a new color. as with the 100mg., druggest was told only new look, no change in drug. so here i go again. am very afraid to even try the new one. anyone else have this happen?

[Deborah]

nitlite wrote:

Did you recently try to fill an rx for the dilantin kapseal 100 mg caps....and when you got the med it looked different? Before it was white with an orange band. Now it is half white and half orange. Is this the same med? Or is this some type of generic dilantin? Anyone know? Are the ingredients exactly the same? I called pfizer to ask them this and could not get a yes or no answer from them. That makes me feel distrustful.

I have been having burning skin and a Rash for 60 days now, and have been on Dilantin for 35 years, and remained under control. In 2007 Pfizer decided to reformulate Dilantin, and what I found out on 10/22/09 from a pharmacist at Pfizer was that the enire outside compound of the capsule changed, and the active compounds remained the same. however, what did checnge were the inactive compounds. I now will have to go onto a mew drug and taper. Shame on Pfizer and the FDA for allowing it!

[mike]

i have been taking dilantin kapseals 100 for 35 years was switched to the new dilantin had to gran mal seizure within two weeks blood level dropped from 17 to 9 in two weeks done some investigating and found the new dilantin capsules do not have the same level for release of medication. there has been 2 deaths in florida that a tv news show covered. took dilantin kapseal 30 mg for about a year no problems now i find that it is no longer available. thanks pfizer

[Pepper]

35yr+ on Dilantin Kapseals.
With the generic form of Dilantin my blood serum level plunged from just under 20 parts per, to 9 parts.
The Phenytoin was being excreted much more quickly.
I began to have regular seizures. The doctor suggested I increase my dose. HA!
I track down Dilantin and pay the extra money.

[Patricia]

I have been taking Dilantin for over 25 years. A few months ago I began experiencing heart palpitations, shortness of breath and dizziness. I ended up in the emergency room when my blood pressure sky rocketed yet no one could find what was wrong. This went on for 6 weeks until I began to suspect the Dilantin so I decided to stop taking the Dilantin from the prescription I had at home and asked for a new prescription from my pharmacist. Within 2 days the symptoms began to decrease and in one week were gone completely so I know that my health problems were the result of some tainted or contaminated Dilantin 100mg capsules. I have reported this to the FDA and to Pfizer yet no one seems very interested. If I hadn't used my own common sense, this probably would have killed me. IF YOU HAVE THESE SYMPTOMS, PLEASE STOP TAKING DILANTIN FROM YOUR CURRENT BATCH AND GET A REFILL. I'd like to have the remaining capsules analyzed to find out just what I was taking but have not had any luck finding an independent source. Where is Dilantin manufactured now and just how safe is the process? Apparently not very. I am in the process of coming off Dilantin and moving to Keppra and so far I am feeling great.