Q. I’m 17 years old and I have epilepsy. I started taking Keppra two years ago. It got my seizures under control and I went into remission.
I recently moved to a new state and my new doctor switched me to generic levetiracetam. My seizures got much worse and I came out of remission.
I am currently taking a trial of Keppra XR and I am in remission, but my doctor won’t switch me back to name brand. So when I run out of this sample, I will most likely start having seizures again. If I can’t get my epilepsy under control my life is a disaster.

A. We have heard from dozens of other readers who had excellent seizure control with brand name Keppra. Many complained that generic levetiracetam has not been as effective. We have submitted many of these reports to the FDA, but so far have heard nothing back.

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  1. R H
    Reply

    Keppra is a terrible drug if you are female and even take a chance and get pregnant. My daughter had a baby while taking this drug. The baby never had a chance. He could not see, hear, eat or move until he died at four years. The drug Co. exec’s should be in jail for putting this on the market. The company even had a “birth registry” on line to track the defects they knew would occur.
    PEOPLE’S PHARMACY RESPONSE: We are so sorry to learn of the tragedy surrounding your grandchild’s short life. Animal studies indicated the possibility of birth defects with Keppra, and your daughter should certainly have been warned about this. Her experience should be reported to the registry:registries@kendle.com
    That will help gather information that should be used to alert other women not to become pregnant while taking the drug.

  2. Lani
    Reply

    I think Keppra XR shows a lot of promise of less side effects, which is great for parents like me who have behaviorally challenged kids.

  3. KC
    Reply

    I just want you to know I too have suffered from seizures since I was 12. I am now in my 40’s. I have seen several different neurologists over the years and the one thing they all told me was that the only thing all the Neurologists agreed on at the annual Neurology conference is that generics DO NOT work as well as brand name seizure meds.
    I have another friend going through a similar situation as you and once he took brand name meds his seizures were back under control. Maybe you need a second opinion.
    Good luck to you.
    KC

  4. ebm
    Reply

    Quit hacking at PP and direct your anger where it belongs. They do a great service and I hope they survive the economic situation right now. They are NOT our online DOCS and have to be careful what to suggest. It does not take much smarts to change docs if you cannot get good service from the present one – unless you are in a rural area with only one available.
    Joe and Theresa bring us valuable info and even answer questions, will your doc do that? NOOOOO!!!! Come on people, take charge of your body and health and READ, READ and STUDY health, doctors already studied diseases!!
    I agree, this poor girl’s parents should be leading the fight since most docs think generics are no problem and don’t check past what they have been told by the mfr.

  5. STEVE
    Reply

    If possible relay suggestion to 17 year old to get different doc, or get current doc to be specific as to why will not switch or when new medicine might kick in. Call or go to FDA website for more info to take to doctor, research internet for medical associations of doctors to see if they can help. Find an attorney who might suggest law suit for malpractice and thereby ”convince” doctor. Different doctor seems easiest. Might contact old doctor to get reference to a worthy new doctor.

  6. Gerard Noteboom,M.D.
    Reply

    I am a retired pathologist. I agree with the comment about the urgency of proper management, including consulting a different physician, who can contest the sometimes dangerous switch to generic substitutes.
    The insurers like substitutes and they often work well. But in this patient’s case it is clear that name brand Keppra is needed. Failing to specify “No substitutes” on the prescription could be regarded as malpractice.
    I have been on Keppra since last September, when I had two epileptic-type seizures, six months after Gamma Knife treatment of a meningioma, located above the left motor cortex, which controls the right side of the body. The seizures started in my right hand. As I found out, the breakdown products and edema following the Gamma Knife treatment, can produce symptoms months later, depending on the location of the tumor. I now have switched to the generic form of Keppra and have not had any seizures. My seizures were not true epileptic and probably will not recur.

  7. Emma
    Reply

    I am very familiar with the plight of the young woman having an extremely difficult time getting Keppra. I am the parent of a young woman taking Keppra for her seizures. She had been seeing a (internationally respected) Neurologist who prescribed the generic – or shall I say did not object when her insurance switched her to it.
    With Epilepsy it is often difficult to pinpoint the reason for seizure activity (stress, fatigue, etc.) – so she endured it for a while. For a variety of reasons she is back with her former Neurologist and he has her on the brand name, Keppra. What a difference in her seizure control! It is much better – amazingly so. I would say my daughter, who is an adult, has been on Keppra (or it’s generic) since it has been on the market.
    We, as a family, are very involved with the EFA, the local affiliate of the EFA, and support various related organizations searching for the cure, or better control.
    Depending on a doctor’s practice location (ie: hospital location with comprehensive Epilepsy or Seizure center – hospital policies re satisfying Govt. insurance constraints, etc.) you will find a variety of responses to the generic anti epilepsy drugs (AED’s). It is generally accepted within the Epilepsy community, which includes doctors, or Epileptologists/Neurologists that the brand name is the drug of choice whenever possible. There are too many variables with different sources and manufacturing techniques, and the ability of the tablet (capsule, or whatever) to hold up and maintain it’s stability of ingredients.
    I do not feel this young woman’s parents are at fault. There are so many variables re things like her insurance coverage, medical resources available to her, etc.. I do agree a good way to start is with the Epilepsy Foundation of America, in D.C.. Another resource is The Epilepsy Therapy Development Fund. They too have a great website.
    My best wishes to everyone dealing with this life altering disease. Truly we do not want another moment lost to a seizure. I hate to go on like this, but the population of America is going to get used to seizures as our soldiers come home. The expertise of medical care is so good now that soldiers are surviving with head trauma that in earlier times would have killed them. Many will, unfortunately, go on to having seizure disorders. We need to lose the stigma associated with a brain that simply is firing electricity erratically.

  8. cpmt
    Reply

    1.May be you should write the company that makes Keppra and explain your problem. Today many Drug co. are helping people who can’t afford to get medicines. 2. change doctors. 3. contact your insurance and tell them (your mother should do this, she will be more forceful).

  9. Sharon
    Reply

    I totally agree with Ellie. Although I do not take this medicine, I also have a seizure problem (under control). The least you could have suggested was that she find another doctor. I cannot fathom doctor or parents allowing a child to have seizures when there are so many choices of medication to choose from.

  10. Elle
    Reply

    I know you’re not Dear Abby, but this was not a very helpful response to a clearly-desperate 17 year old. It’s nice that you’ve submitted reports to the FDA on generic levetiracetam, and not so nice (but pretty predictable) that you “have heard nothing back,” but what good does that do a child in her terrible dilemma?
    First, she is a minor; where are her parents, who should be working with her “doctor” (given his behavior, I use the term loosely) to get her the Keppra that she clearly needs? If they’re not prepared to fulfill their parental responsibilities, including perhaps finding a new, responsible, health care provider, perhaps she will need to reach out on her own to other resources, eg, the Epilepsy Foundation (the website for which includes local sources help) or EpilepsyAdvocate.com, for assistance.
    My heart breaks at this child’s cry for help: “If I can’t get my epilepsy under control my life is a disaster.” As she came to you for assistance, presumably through your website, perhaps she would see a subsequent posting that would offer her some action-oriented suggestions that would give her some hope of a solution.
    PEOPLE’S PHARMACY RESPONSE: THANK YOU SO MUCH FOR MENTIONING THE EPILEPSY FOUNDATION, WHICH IS AN EXCELLENT RESOURCE, AND EPILEPSYADVOCATE.COM

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