People's Pharmacy: Generic version of Dilantin leads to seizure

Jan 16, 2008 Full story: Buffalo News 15

Q. I was taking phenytoin, an extended release generic form of the anti-seizure drug Dilantin. via Buffalo News

Full Story
sally

United States

#1 Mar 3, 2008
My mother was switched from the brand drug Dilantin to the generic Phenytoin by her insurance company. She has had two major seizures on the generic and both times the therapuetic levels in her system were very low (2 and 3 respectively) instead of between 10-20 as it should have been. These levels were drawn at the ER so are accurate. After a boost of the real Dilantin she returned to therapuetic levels but not after causing her recent memory loss and loss of her driver's license. Phenytoin is not a drug to play around with.
luanne

Lansing, MI

#2 Mar 16, 2008
Yes, Sally, My wife had to go to the ER, after having 7 seizures last week, and had to stay a week, after using generic dilantin. Back to brand dilantin, and stable again. Other generic meds. may be ok, but not for seizures.
Dilantinuser

San Francisco, CA

#3 Jun 3, 2008
Not even the brand name Dilantin is reliable for all.
paul

Syracuse, NY

#4 Jul 31, 2008
Last year, my Dr. switched my meds to generic dilantin. Three months later, I had three seizures within two months (after 20+ years of being controlled). The last one, I was taken to the ER where the theraputic level of the generic version was shown as being extremely low -- only three hours after I had take it (when it should be at its peak). Switched back to the brand name, and have had no problems.
Rose

Danville, VA

#5 Aug 4, 2008
I was given dilantin at the hospital after a hysterectomy. It did something weird to me, seemed to put my automatic(autonomic?) breathing center to sleep. I had to remind myself to take each breath, and called my husband to come to the hospital to spend the night with me, to keep me awake so I wouldn't fall asleep and stop breathing. Eventually the nurse believed me and stopped the dilantin.(I don't remember now, but it may have been administered in the IV line.) Dilantin is NOT safe for everyone!
Mary

Mashpee, MA

#6 Nov 23, 2008
I was controled with the name brand of Dilantin.
Several times over the last 15 years I have tried the generic brand. It has never worked.
Because this affects our copay, I don't understand why this should be allowed if the generic does not help many people.
A generic should only be allowed if it truly can replace a name brand drug.
Beware of the new insurance copays. Now not only do you have to pay more for a name brand, but now you have to pay even more if you are using a name brand and a generic is offered. Check your new copays.
Good luck
Mary

Since: Jan 09

Monterey, TN

#7 Jun 16, 2009
I have the same problem. I was taken off the Dilantin a couple of time over the last 15+ years and had seizures both time. Getting the Dilantin wasn't a problem when I was younger and still on my parents insurance but now my provider will only cover generic. So not only do I have to pay for my insurance but I also have to pay $50+ per refill of Dilantin.
christie

San Ramon, CA

#8 Aug 30, 2009
I had been taking brand name Dilantin for four years to control seizures resulting from the removal of a benign tumor in my frontal lobe. my insurer switched me to the generic Dilantin and I had a seizure after four years of being seizure free. The emergency room found I had very low levels of Dilantin in my blood. If so many people are having break thru seizures from the generic why is it still being prescribed ?? especially with no warnings. There should be a class action suit!
Linda

Grand Rapids, MI

#9 Sep 29, 2009
christie wrote:
I had been taking brand name Dilantin for four years to control seizures resulting from the removal of a benign tumor in my frontal lobe. my insurer switched me to the generic Dilantin and I had a seizure after four years of being seizure free. The emergency room found I had very low levels of Dilantin in my blood. If so many people are having break thru seizures from the generic why is it still being prescribed ?? especially with no warnings. There should be a class action suit!
I agree with you Christie. I have been on Dilantin for years, I was switched by my insurance company's mail order drug and had seizures. Then I was back on regular Dilantin, the hospital gave me generic while in the hospital for something else and I had another seizure. I just read on line that there is up to a 20% difference between generic and brand name for anti-epileptic drugs.
David

Chicago, IL

#11 Feb 20, 2010
I've been taking brand name Dilantin for 15 years now. The 2 times I've gotten the generic I've had a seizure within 10 days of starting, most recently after being 7 years seizure free on Dilantin. I agree with others here, it's not worth the risk. Have your doctor specify "Do Not Substitute" on the script. It won't get you out of paying more, but at least the pharmacy won't try to dispense the generic.
Dave

AOL

#13 Oct 2, 2010
26 years no seizures,tried generic pheny. about 21
years ago and started feeling kinda off and imeditally switched back.Thought about trying it again a couple of years back.The pham.said it had been reformulated year before that but advised against it.Said stay with what is working.So I stayed.
butterfly

Mansfield, OH

#14 Jul 26, 2011
I have taken the brand name Dilantin for 35 years with very little problems. Yes, I experience some of the long-term effects but they have tried to change medications without success; my neuro even determined that generic Dilantin was unsuccessful for me. My problem now is that the insurance company is having trouble getting brand name Dilantin due to a shortage(local pharmacies too)and think I should change medications. I have a new neuro becuase the old one passed away and he feels that I should take generic. I told him of my past problems and he suggested weekly blood tests. What I want to know is how is that going to keep me from having seizures? If I do then I will be unable to get my blood tests because I will be unable to drive.My thought if generic is readily available and there is a shortage of brand name-how can they be the same thing?
AlA

Waukesha, WI

#16 Dec 19, 2011
In late October the VA switched me to generic dilatin. Since then I have had a number of petit mal seizures and then last night a gran mal. The ER ran a dilantin and the result was "6" way below the 10-20 therapeutic range. I have called ny doc and am waiting to hear back from her.

Since: Nov 11

Location hidden

#17 Jan 13, 2012
I have been on name brand Dilantin so long and I have always been apprehensive of ANY generic.

After reading all this I'm so glad I told the Dr, pharmacy, and insurance company no way I was even trying the generic Dilantin. I'm a construction worker and end up high in the air a lot. Wouldn't a seizure be just great 200 feet in the air.

The most tragic part of all these stories is how many people have had a seizure because of this generic and been hurt or even killed because of it.

The bottom line to me is if you think big Pharma cares about anything but their bottom line we are all sadly mistaken.
Please be careful everyone.
Stephania

Austin, TX

#18 Apr 16, 2013
Dilantin, good offer.
I have http://bit.ly/149fZzg for about 5 years and find their products to be reliable and speedily delivered.
Excellent service, lowest price.

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