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

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

[sally]

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]

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]

Not even the brand name Dilantin is reliable for all.

[paul]

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]

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]

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

[turn3]

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]

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]

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.