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How Good Is Generic Anti-Epilepsy Drug?

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Q. I need more information about the generic for the epilepsy drug Keppra. I understand that the generic is fairly new.

Is it safe to take, and does it have the same active ingredient as Keppra?

A. Generic drugs are supposed to be identical to their brand name counterparts. We have received a couple of troubling reports about this epilepsy medicine, however. One reader wrote, “I take Keppra and recently I was switched to a generic version. Several days after I began taking the generic pills, I suffered multiple seizures. I had to go back on name-brand Keppra.” When we asked the FDA about this problem, we were told that the generic formulation was unlikely to be responsible for seizures.

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32 Comments

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I have been on brand name Keppra for several years. In December, the drug company sent me generic Keppra manufactured by Mylan. In about 3 weeks I had 3 relatively severe complex partial seizures. I previously had mild complex partial seizures about 3 per month. I am also on Tegratol and Depakote. I talked to my neurologist and he said that there are 10 different manufacturers of generic Keppra now. He wrote me a new prescription for Keppra XR which does not have a generic formulation. I have had a few mild complex partial seizures since then, so I am back to "normal".

The FDA is lying. I wouldn't advise anyone who is taking medication that works for them and isn't causing any problems to switch. It is way too much of a risk. I'm starting to wonder if generics are just placebos. Does the FDA think real human problems and conditions are BS? I am very upset by this and I hope the new health plan doesn't force generics on people.

I've had this problem in the past with 3 different generic SSRIs until I caught on and learned that I am not alone when it comes to the failure of generics to do what they are supposed to do. My husband has also experienced this when protonix, his stomach medication went generic.

I am thankful that we have a doctor and insurance willing to get us the medication we need. The FDA wont listen so you have to do what works for you and have a doctor willing to listen to YOU and whatever the FDA or anyone else who hasn't had the experience with your medication is claiming.
RC

I've been successfully treated for bipolar for 20 years, but since my pharmacy switched brands, my Trazodone hardly works and my doctor increased the dosage by 50%. I'm not sleeping well anymore, for the first time in years. I think it's the generic brand, there's no other explanation for the sudden change.

Lamictal is an anti-seizure medication that has successfully been used for Bipolar Disease for the last several years. Recently, ONE generic version (Lamotrigine) of it has come out, manufactured by TEVA. Many many reports have been made to the FDA of people ending up in hospital after switching; both with seizures, and with exacerbation of bipolar symptoms, using manic phase.

There has been NO response from the FDA. Many physicians have now been writing the scrip for Brand Name only. There have also been a lot of insurance company (usually Medicare Part D) refusals to cover the brand name version. The physician CAN submit a "formulary exemption request" for the reason that the patient has been stabilized on brand name, and Dr. feels that switching to generic would put patient at risk.

Usually the insurance will then cover, albeit at a higher price. I wish that some newspaper would put in a request to FDA as to how many complaints they have received, and WHY no action has been taken!

I hear this a lot with meds for epilepsy and bipolar. The generics are not always the same.

My husband has been on Keppra for two yearsMarch 09 my husband recieved his generic keppra rx. He currently takes 5,000 mg of keppra generic daily. He has now been having seizures on a daily basis, since the change over now being entirely generic. We are now scheduled with a seizure specialist because of this new situation. This has only began since introduced to the generic keppra. I am very concerned. Is this being reported in the news?

I have just learned that my insurance plan no longer will cover Keppra brand only generic. Over $1000 co-pay for a three month supply if I want to pay. The last time I took a generic version of a med was 7 years ago and it resulted in a grand-mal. It took three years to find the right combination of meds after that happened. My worst fear is to have a seizure while driving and hurting other people. It's not fair to put me in a dangerous situation just to save money. I have been taking Keppra for about 6 years and I shouldn't be forced to put my safety and health in danger. I'm at a loss as to what I should do.

My daughter is 18 years old and switched to the generic brand of Keppra a couple of months ago.

She was out on her own and decided to opt for a cheaper brand based on her financial situation. Her seizures have been under control with Keppra for over a year. While taking this generic brand, she has been experiencing break through seizures that have included two this past week.

We did in fact change back to the name brand version today and thank God she has this option. But I just want everyone to know that YES, THERE IS A DIFFERENCE and IT IS NOT WORTH TAKING THE CHANCE OF A GENERIC MEDICINE WHEN IT PERTAINS TO SEIZURES!!

She recently move back home and her last seizure happened in the shower this past Sunday. She fell out of the bathtub, convulsing on the floor. I have never seen a seizure of hers that was as intense, lasted as long and she was out-of-sorts for almost 24 hours. I did take her to the emergency room because she complained of a massive headache, accompanied by throwing up. I brought the medicine with me to the emergency room and noticed the change on the prescription.

I took it upon myself to do a little research on patients and their experiences with this generic drug and I was amazed on how many people are experiencing the same problem. Go to the Epilepsy Foundation website, search Generic Keppra under the eCommunities and read about all the complaints.

The FDA really needs to step up to the plate and read as many blogs about these complaints and do something about it. I really got upset when I read that when asked about this problem, we were told that the generic formulation was unlikely to be responsible for seizures. HELLO!!!! How much information does the FDA need to figure out that this generic drug should not be on the market at all?

I also have been reading that the cost of Keppra has increased since this generic brand came out on the market and some insurance companies are enforcing their members to use the generic drug.

I wonder if these insurance companies would rather foot the bill for increased ER costs verses the option of letting people choose name brand over generic?

gg

I was switched from branded Keppra to the generic (Mylan mfg), and within weeks was experiencing full blown grand mall seizures without warning, after being seizure free since switching from dylantin to Keppra. I've since gained a formulary exception to get the drug covered with a higher copay. While for some therapeutic classes, generics may be warranted, in my case as well as other people dealing with siezures, I would highly recommend a strategy of caution before moving to generic Keppra. It doesn't work for everyone, and in some cases makes the condition worse.

My two cents

I am appalled at the lack of response from the FDA on this one. My mother has had a number of health issues including seizures for years. She had been taking Keppra for years until the pharmacy switched her last October. We were wondering why the frequency of her seizures had increased until we saw a story about this on the local news. We switched her back to brand name Keppra a few months ago and since then, the number of seizures has gone down. PEOPLE CAN DIE AND HAVE DIED FROM THIS - WHY ISN'T THE FDA DOING SOMETHING ABOUT IT???????

It had taken me several years to find the correct medicine and dosage for my seizures. Finally Keppra did the trick. Then my insurance company required that I take the generic for Keppra. I noticed a difference right away, and feel like I have taken 5 steps backwards. Bottom line- THE GENERIC DOES NOT WORK!!! Please can't it be taken off the market??

I have been on Keppra for one year after a craniotomy for a brain tumor. When I picked up my prescription at the hospital - where I have worked for 18 yrs - my copay went from $35 to $192 for a one month supply! There was also a note attached that there is now a generic available. What are they thinking other than saving money??!! I am so upset that I have to fight yet again w/ my now new insurance after fighting for 7 months w/ the previous insurance - both supplied by the hospital! I am working and driving, and am concerned and a little frightened.

BLM

I was on Keppra for several years with excellent results; then my insurance plan forced me onto levetracetam . Within a few days I started to once again have seizures. I had to have my neurologist write a Rx stating I must go back to the Keppra. Since returning from the generic I have had good results and no seizures. The FDA should take this product off the market and allow the doctors to contact the mfg. and recall this cheaper product.

I have been on Keppra 500 TID for 2 years. Recently switched to generic which I was glad of because I have no health insurance.

The initial med was beige in color and worked fairly well. The next time I went it was white and had M on the tablet. It does not work for me, period.

It's just scary that we have to risk our lives for the almighty dollar. Going back to the expensive stuff, at least I know it will work.

I have been on 500mg of Keppra twice daily, for two years. I had been on many other seizure medications for over 45 years with poor results. Keppra has turned my life around and I am seizure free. Now at the age of 71 I am fighting to overcome Medi-cal, Medicare and the"doughnut hole". I live on social security and do not have the finances to pay for Keppra. Having tried other generics with bad results I can't imagine what generic Keppra will do.

How can our government stand by and let these huge pharmaceutical companies make billions on the backs of sick, poor, young, and senior people? I am sure I am not only speaking for myself. What goes around comes around. I may not be here to see it but, I believe it will and when it does I hope they will remember all the lives they have changed for the worse and even erased in their greed.
Sandra

My daughter had her first seizure at age 2, and was diagnosed with Tuberous Sclerosis. She took Tegretol at first and the neurologist indicated on the prescription,"Brand Necessary." All was fine for a month, then she started to stagger around, losing her balance, acting zombie-like and was barley coherent. I was ready to rush her to the hospital. I looked at her prescription and realized that it had been mistakenly refilled with generic carbamazepine. I immediately returned the drugs and had the pharmacy replace it with brand name Tegretol. Within hours, she went back to "normal" and had no more issues.

Now, she's on Keppra and I just got a letter from BC/BS that the deductible for Keppra is going up - didn't say by how much - and they recommend we switch to generic. I will never again place my daughter on a generic seizure med after our previous experience. I'm not sure yet if the doctor specifying "brand necessary" will help with the insurance company and I expect to be fighting a battle going forward.

Generics don't work. I have always received my medicine from a local pharmacy. However, we were pushed into ordering from an express company. Little did I know with each order the company can change to a generic, a different one with each order, so can your drugstore.

Due to a law in KY a generic MUST be given if it is FDA approved. My generic was sent from Arizona by UPS. I had to drive 35 minutes to pick up a package that looked as if it had been stepped on, or thrown. I was sent a generic, that replaced my generic, that replaced my Keppra. Eight months ago I had surgery for an aneurysm. I am drug sensitive and I experienced an increase in seizures, with unreal headaches, shakiness, and lengthy sleeping.

Basically, my Insurance Co. paid $352 dollars for medicine I couldn't take. How is that saving money? I told them I would take nothing if I had to continue to take the 2nd generic. It is sad because my seizures will never be under control. I am 64 and falls = broken bones = Emergency room visits. I love how the FDA is looking out for us. I can't work, or drive.

My daughter has cluster seizures which can be fatal. With keppra we were down to 4 a year. In Oct our insurance co made us change to generic or pay 600.00 a month copay. Since Oct she has had one every month. I have worked 36 years and should be able to have what works for her, wake up FDA. Would you sacrifice your child?

Interesting. My autistic son is on Keppra, lamictal and depakote. Here's how that happened. He was on depakote for many years. Long term depakote therapy leads to hyperammonia. A blood test revealed hyperammonia. He had also had his first tonic clonic seizure while on depakote. He was discontinued from depakote. He was then put on lamictal. Was having a ton of tonic clonic seizures. Finally, at about 600 mg of lamictal, he improved a bit.

Then he started having myoclonic seizures that went status. Turns out: lamictal can increase myoclonus. So, I did research and found out that Keppra is good for myoclonic jerk type seizures. Neurologist then prescribed Keppra. Keppra, at about 3000 mg per day, in divided doses, slowed myoclonic episodes. Now he's having daily drop seizures. (Atonic). So, neurologist ordered depakote. Began at 250mg AM. Took one week, now he's not having atonics.

Of course this could all change next week. One wonders if meds are even same dose per bottle, you know? Like I wonder if these pharm. companies change ingredients ever so often? Who checks? Nobody. God help us. The good news is for now depakote 250mg, lamictal 500 mg, and keppra 3000 mg seems to be a good combo. I do believe everyone is so different, it is important to KNOW where the onset of seizure activity is coming from in brain, otherwise doctors are just GUESSING what drug will target the seizures.

I have been having seizures since I was a child. Now at 54, I still have a few, but with the help of Keppra and other meds I've been able to lead a semi normal life. Now with the government changing the rules, my place of employment ins, is changing big time.

I will be paying over 600.00 a month for just 1 medication. I am sure this may not be new to some of you, but for me, it's a shock. With other bills to pay, going to work every day, etc. It just really makes me mad. That is the reason I have continued to work as long as I have with my company, for the ins. As well as my retirement, etc. That will be taken away before all this is done.

I will continue to fight before I give the pharmaceutical companies all I have.

My daughter started having grand mal seizures at 10 years old in her sleep. Despite many tests they could never find the cause of her condition. At first she was only having a few seizures a year, in her sleep lasting between 20-60 seconds. When she was around 13 the seizures were happening more frequently, about once a month.

At this time I decided to put her on meds. they started her on Keppra 500 mg twice a day. No seizures for 25 mos., not one. We thought we were in the clear. Then the generic came out and the insurance company will only pay for the generic because of course it all comes down to money.

The pharmacy informed me there is no difference between the generic and the brand and just switched her without even notifying or asking the doctor. Since then she has been having relapse seizures. Every month the pills are different shapes, sizes, and colors. My neurologist informed me there are 28 different companies that manufacture this drug and none of them can be 100% identical. The doctor is very adamant about the generics being responsible and he is outraged by this. He has many patients experiencing the exact same thing with the generic form of Keppra.

He wrote a letter to my insurance company demanding she be on the brand. I don't know how they approve drugs that don't work with something like this.

I have switched my daughter back to the brand and I am paying for it. I will never put her back on the generic.

I was controlled for 5 yrs on keppra (brand name) until my insurance switched me to generic. I started seizing again. My doctor said he has found the generic to be less effective and switched me back to brand.

Dear friends - I just started on Keppra. My insurance rules force us to take generic even if the dr. prescribes brand BUT it does offer the channel for my dr. to launch a review and the insurer will decide what I will pay. I had to work with my insurer and my doctor to have a review and get an exception, other wise I would had to pay the price differential from brand vs generic which was $560/mo. The exception was granted. So JIC check with your insurer if they will review your situation and will allow the brand name to be covered. Luckily I only have to pay the maximum single deductible for a 1 mo supply which is $50/mo.

I found it silly that my dr. basically had to say the same thing 2x before it got done and the extra effort I needed to exert was frustrating. Just remember to always check your options and check if there are exceptions to the rules. I only knew to ask my dr. to launch a review because I took the time to read my insurance plan. If necessary escalate your question if the first person you contact at your insurer doesn't know something. That's why they have supervisors. And be patient (I wasn't at first and I got better results when I calmed down). Best of luck to us all!

Just to put in a voice for the other side... I was recently diagnosed with a seizure disorder and the neurologist prescribed Keppra. I take the generic (leviteracetam) as the dr. suggestedand it is working beautifully! I feel better than I have in months, more energy, better sleep, no seizures etc.

Using a generic form of Keppra is not always bad! someone needs to say that!!

My daughter started on brand name Keppra when she was about 16 months old. It worked for her. When the generic came out the pharmacy tried to switch her but her doctor felt it was important for her to remain on the name brand. My daughter had infantile spasms which are dangerous seizures because they cause brain damage. There was no way we were going to mess around with her meds which were working. Because of her disability she has state insurance secondary to our family insurance. The role of the secondary insurance is to pay for any copays that are required by our primary insurance.

The state insurance refused to pay the copay on the name brand since there was a generic. Even an appeal from her doctor who clearly stated that the total of the yearly copay was tiny ($500) in comparison to the huge medical bill there would be if she started having seizures again which would require an in hospital EEG for 2 to 3 days. Not to mention the brain damage the seizures would cause.

The state insurance refused to budge and even went so far as to tell us that the only way they would pay for the brand is if my daughter tried the generic and FAILED! If she started having seizures again then they would pay for the brand name.

This is so incredibly short sighted! Ultimately we paid ourselves to keep her on the name brand. But recently the pharmacy tried to re-submit the name brand to the state and they paid for it. Not sure if that means they have wised up, but if so it would indicate that they are acknowledging a potential problem with generic Keppra

It is entirely possible the generic might have worked for her but none of her doctors felt comfortable making the switch. If the generic had been available when she started the medication back 4 years ago and worked we would never have questioned the decision. But making the switch when we had had success was tempting fate.


Just to balance things out a bit... on the other side of the coin, I have been on the generic form of Keppra (Leviteracetam)for about 6 weeks or so now and had GREAT results. I am very happy with it and could feel an improvement in symptoms very soon after starting the drug. So it does SOMETIMES work! Let's not write it off yet.

I have been on Keppra for the last 12 years and have been seizure-free since then and living a normal life. My neurologist mentioned to try the generic Keppra now. I am a little hesitant to do so after reading these comments, but since Alice mentioned she has had great results, I am hoping it will do the same for me.

It is a risk, but everyone is different when it comes to taking these anti-epileptic drugs. I hope it works for me and that I am not taking a huge risk just for the dollar amount.

Hi alice my name is lidia, I have a 14 year old, my son has had 2 seizures. They were like almost 2 months apart. Taking levetiracetam For keppra, this is his first time taking this, he still getting test to find out what he has. He is going 2 get a eeg in 2 days. Am worried because this is something new for my family. I really want 2 make sure he is taking the right medicine. Since when do u have your seizures?

Generic Keppra did absolutely nothing for me, setting me back into seizures, after being controlled on the name brand for several years. My insurance no longer covered name brand Keppra, and I could not afford it. My wonderful neurologist prescribed Vimpat, a fairly new drug, which, as of right now, has no generic equivalent.

Fortunately, my seizures are controlled again! I dread the day a generic becomes available. Of course, I will try it with an open mind (pun intended!) I wish our insurance people would walk, just one day, with a pill that has absolutely no medicinal value!

I'm sorry your son is having seizures. It must be scary for both of you! I have heard that generic Keppra DOES work for those that started with the generic levetiracetam. It seems to cause problems for those that have been on the brand name Keppra, and are then switched to the generic. Clearly, the generic medicine DOES NOT contain the same pharmaceutical ingredients as the brand name. I wish the best for you.

I have been taking Levetiracetam for the past 6 months after being on Keppra for 12 years. Fortunately, I have had great results. The generic is doing just as well as the Keppra did. No seizures.

Maybe it's my age ? I was diagnosed with epilepsy at the age of 15. Had seizures daily or monthly (it varied at times) and was on a variety of prescriptions to control the seizures. At the age of 32, I was put on Keppra and that is when the seizures stopped. Now at the age of 44 taking Levetiracetam, no seizures (Thank God !) My neurologist says that as time progresses, the brain could "forget" how to have a seizure. I hope that is true.

An important note about generics: Did you know you have the right to request a specific generic? After being switched to generic Keppra when it came out, I found it didn't work for me, either. The pharmacist suggested we try a different brand and I now ALWAYS REQUEST the same manufacturer. I have moved this Rx from Walgreen's to CVS to Caremark to Merck over the years, and I always specify the manufacturer.

Just realize that EVERY TIME YOU FILL A GENERIC, you may be taking a risk -- because the inert ingredients may not work the same way in your body as the previous generic did.

For elderly patients, requesting the same manufacturer is also good to reduce the confusion that can come along with their pills looking different from one refill to the next.

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