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Q. My 7-year-old child had not had a seizure in four years. Her epilepsy has been controlled with Keppra and the ketogenic diet.

Recently, she was switched to levetiracetam, the generic form of Keppra, and now the seizures have returned.

I am so disappointed and worried. How can I get the pharmacy to dispense name brand Keppra?

A. Many others have complained on our website that generic versions of Keppra were less effective than the brand name.

One person with epilepsy was well controlled for years on Keppra. After being switched to the generic form she had several seizures within two weeks. She noted, “this was life threatening since I fell down stairs and also had a seizure while cooking.” After her doctor insisted on Keppra, her seizures were once again controlled.

We brought this issue to the attention of the FDA over six years ago. Officials tell us they are investigating, but it could take some time.

Get the Prescriber to Help

In the meantime, we encourage you to enlist your daughter’s doctor in your effort to obtain the brand name medicine.

If your insurance company does not respond, you can save hundreds of dollars by looking to a Canadian pharmacy for the brand name medicine. To help you in this quest, we are sending our Guide to Saving Money on Medicine with tips on using generic drugs wisely and accessing Canadian pharmacies.

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  1. jessie
    Madison, Wisconsin
    Reply

    We are able to qualify that our son’s seizure disorder is out of control when he is on the generic form of Keppra called Levetiracetam formulated by Qualitest. He is using and has been using other generic forms of this medicine in the past and his seizures have been under control.

    This observation has nothing to do with our attitude towards generic medicine – but there has to be a better method of controlling variability in “recipes” developed by these companies and of monitoring their drugs’ actions.

    Just as all generic medicines are not bad – all generic medicines are not good!

    Brand name medicines were first developed by the “BIG” Pharmaceutical Companies and as such, they were successful because they were carefully quality controlled. I believe problems only began when smaller companies without the burden of a patented product began to manufacture them, presumably, with less quality control.

  2. Jameson
    Reply

    I would like to point out that this question and another question almost identical to this one, and this answer have been repeated verbatim on about a dozen websites I have visited. If “many others” have indeed had the same issues with Keppra, why are these stories repeated with such frequency? I think one of the problems here is that people already have a belief that the generic version is less effective; therefore, our natural confirmation bias leads us to seek out confirmation of that belief. This makes us think a certain way. We will seek to minimize any seizures we had on the name brand drug and maximize any seizures on the generic. We may see a seizure or two within the first couple weeks of this transition as proof positive, not remembering the three or four seizures we had within a couple to a few months we had a year or two ago that we chalked up to misfortune, a string of bad luck, etc. Now, I am not sure whether there is truth to this, but I do know that a few labs have done testing, along with the FDA, and there have not been any conclusions that lend credence to this. I wonder about the motives of people who tell someone to spend 50% to 120% more on the name brand. Afterall, it is the amount of the active ingredient in the body that is helping, something that the generic brand does not change, which has been proved time and time again (though admittedly I could not find any tests that specifically checked blood-serum levels.

  3. Matt S.
    Reply

    Generic Lamictal made me start getting manic so I had to stop taking it and get the brand authorized. Adderall makes me feel like I am on it for the first week when I get a new Generic and not eating or sleeping for a week is not pleasant.

  4. cw
    SC
    Reply

    Long ago, I read that switching from Dilantin to its generic version was a risky adventure. It appears that generic anti-convulsants are not efficient.

  5. Claire R
    Dallas, TX
    Reply

    I’m currently in a “battle” with my insurance company over them changing the cost of Lamictal (also a seizure medication) (changed to over $1500 for a 30 day supply- used to be $180 for a 3 month supply) therefore forcing me to switch to the generic. I’ve had problems with the generic lamitrogine in the past (constant headaches). I finally received an appeal to be given a Lamictal prescription… If I pay the $1500! I guess money trumps a patient’s well-being. I’m terrified of starting the generic drug. After almost 8 years seizure-free, I cannot imagine going back to a life of seizures.

  6. CC
    Madison, WI
    Reply

    Generics are not equal. I just discovered that the generic manufacturer, ranbaxy, is once again providing many of the US generics to the distributors. I am going to write the FDA to look in to this again.
    CC

  7. Cindy
    New Mexico
    Reply

    I do not understand the FDA’s lack of concern for consumers. Obviously it has to do with someone’s pockets being lined. Generic venlafaxine did not keep me stable, and while not a matter of life or death, it would have been impossible for me to have been working at the time. I pay out of pocket for proprietary now. I feel deeply for those who are stuck with generics in meds that are a matter of life or death.

    • Lanita
      Reply

      What’s there to understand? The FDA is overworked and underpaid and the BIG pharm compromise these workers. The FDA should be merged with the FBI and then maybe we’d see some real investigations and prosecutions of people who are filling GENERIC drugs with TOXIC material and selling it to the US citizens.

  8. Louise Zimmer
    Paso Robles, CA
    Reply

    When my Std Poodle developed “head shakes”, the specialist put her on Levitiracetam 500mg ER. As usual, my pharmacy dispensed a generic. It worked fine and she stopped her head shakes. All went well for about a year and then a refill did NOT produce the successful cessation of her head shakes. It seems that one pharmaceutical company’s formula (Quali-Test) works very well for her and the other 2 generic formulas we were given did not help. Once again, generics are NOT equal.

    • Violet
      Miami, FL
      Reply

      Louise, I had the same experience. The Qualitest brand of Levetiracetam oral solution works the best for my daughter. This month, CVS told me it has been discontinued. Have you found any other generic that works for your dog?

  9. Y
    Reply

    two things-
    First contact your insurance company and let them know your wishes. They will require your doctor’s office to complete paperwork indicating the reason you need the brand name. When this paperwork is approved, it is usually approved for a specific time frame. In addition, the prescription from the doctor will then need to be written as “dispense as written”. Be certain to ask both parties to copy you in the communication/documents.

  10. Heather
    Reply

    Pharmacies should be able to allow you to substitute the Real drug for the generic. Some don’t however telling you your doctor knows best and has prescribed the generic. Don’t be fooled. Ring around for a pharmacy that does. If not ring the doctor and get them to FAX through script for the Real Deal drug

  11. Mimi
    Texas
    Reply

    Keppra XR has been very effective in controlling my seizures. When the generic came out a few years ago, my insurance carrier refused to cover the name brand drug. I switched to the generic and had a seizure. I was told I had to fail on two drugs before I would be covered on Keppra XR again. We tried to order from a Canadian pharmacy, but everyone we contacted said Keppra was now being handled by their US distributors. There was no price break. My neurologist suggested that one problem may be that the FDA’s guidelines for generic drugs are not as strict as they are for brand name ones. The inactive ingredients may be different and there may also be a greater degree of variance in the active ingredient among the various manufacturers of the generic drug.

    The consumer may be getting a drug from a different manufacturer each time he refills the drug based on which manufacturer had the best prices at the time they pharmacy bought their drugs. Seizure medications are pretty tricky. Once you find one that works, you shouldn’t have to fail on two others in order to get covered by your insurance carrier. I am grateful that I can pay for my Keppra, but I am very distressed that others do not have that option.

  12. Linda Pincheck
    Florida
    Reply

    My mother suffers from post stroke seizures which are maintained by use of generic Keppra. Our regular pharmacy changed manufacturers resulting in my mother having two seizures in two days. We had to have the pharmacy not dispense, to us, refills from that particular manufacturer and we have been seizure free since then. There are several manufacturers of the generic, some are better than others.

  13. Cindy
    Mundelein, IL
    Reply

    I met a man on the golf course this summer. He said he had a stroke earlier in the year. He believes it was caused by his pharmacy getting different medication for his Generic prescription.
    He knows he can never prove it, but he was questioning his pharmacist and now asks where they are getting his meds, watching how they look, and if they are from the the same supplier. Since they are generic, the pharmacy gets them from whoever gives the best price.

  14. Paulis
    Reply

    If you haven’t yet done this, you could try having your daughter’s doctor write “dispense as written” on the prescription. Some prescription pads have that as a check mark option. I’ve had that work out. Another strategy that has worked for me is to contact my insurance company to request information on filing an appeal. In my case my medication (Advair) had been removed from coverage list. My doctor filled out an appeal form stating the alternates didn’t work for me and the appeal was successful. I’m not sure this process would work where a generic is available, but it might.

    It’s so distressing that generics are imposed on patients. Not only are the requirements for their therapeutic equivalency lax, but the manufacturing standards are also inferior. And generic manufacturers are protected from lawsuits so anyone harmed by a generic is left with no legal recourse. The government fails in its oversight responsibility and now we hear that prices for generics are way up. It’s all an unfair burden for patients.

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