Epilepsy Talk

Epilepsy Generics: Yes, No or Maybe So? | September 1, 2009

Money’s tight these days.  And there’s no question that brand-name drugs are expensive. Yet, insurance with a good drug plan can be wildly expensive too.  Maybe your employer doesn’t even offer a drug plan as part of your medical insurance.  Or perhaps you can’t afford the much higher premiums.  Worse yet, you could be uninsured.

Guess what?  Those increasing co-pays for brand-name drugs don’t exactly thrill the insurance industry either.  And pharmacies have a much lower profit margin with brand-name drugs versus profitable generics.

And almost everybody considers generic drugs a no-brainer.  You get significant savings without any (noticeable) change in your treatment.

But they’re not epileptic.  And they don’t walk the tightrope of a delicate neurological balance.

True, with most medications, there’s only a subtle change between a brand-name drug and a generic.  And usually, the two drugs can be switched without any side effects.

However, with anti-epileptic drugs (AEDs), there can be as much as a 20% difference between the absorption and metabolization of the drugs.  Which can effect seizure control and even lead to breakthrough seizures.

But it’s not just the prescribing of generic AEDs that appears to be the problem – it’s the switching between two brands. Usually, the switch is from an expensive name-brand drug to a newer generic.  But the culprit is not necessarily the generic!

According to an Epilepsy Foundation report, more than 1000 consumers surveyed, reported an increased risk of seizures and side effects when:

1. They switched from one manufacturer’s formulation  of an anti-epileptic drug to another…

2. They switched between different manufacturers’ versions of the same generic drug…

3. They switched from a generic to a brand-name drug…

4. Or they switched from a brand-name drug to a generic.

It’s all real confusing, I know.  I’ve been there, too.  But I think the bottom line here is consistency.  If you have a medication That works for you, stick with it.  Don’t let the pharmacist just change you over to a cheaper alternative.  (It is tempting, I know!) Ask your doc first.   He or she may agree or they might save you from a whole new bunch of ugly seizures.

Other articles of interest:

Tighter Standards Ahead for Generic Epilepsy Drugs? http://www.medpagetoday.com/MeetingCoverage/AES/43334?xid=nl_mpt_DHE_2013-12-11&utm_content=&utm_medium=email&utm_campaign=DailyHeadlines&utm_source=WC&eun=g678262d0r&userid=678262&email=pfjohnson@comcast.net&mu_id=5845719

Prescription Switching. Do You Know What You’re REALLY Getting? https://epilepsytalk.com/2013/02/12/prescription-switching-do-you-know-what-youre-really-getting-2/

Biotech Firms, Billions at Risk, Lobby States to Limit Generics  http://www.nytimes.com/2013/01/29/business/battle-in-states-on-generic-copies-of-biotech-drugs.html?nl=health&emc=edit_hh_20130129

Supreme Court Split on Pharma ‘Pay for Delay’ Deals  http://www.medpagetoday.com/PublicHealthPolicy/HealthPolicy/39891?isalert=1&uun=g678261d124R5845718u&utm_source=breaking-news&utm_medium=email&utm_campaign=breaking-news&xid=NL_breakingnews_2013-06-17


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  1. When I go to our Epilepsy support group- I am amazed at the number that DO INSIST that they receive the brand name for the medication-not generic. I am one oddball-that has never noticed a difference. Perhaps back when my seizures were worse, it didn’t matter– I was on 32 pills a day, 8 meds anyway…. and now after my 3rd brain surgery I am cut way back-that I just don’t feel any seizure feelings-on all generic. But sometimes when one person hears it in the loop-it goes to that working brain–and stirs up more story than what is happening. And others-truly are that sensitive. And I feel for them. It is hard to be on one for a decade, then try to change them from that to generic. That just isn’t right. Not for the brain. That is when you need to have the doc sign a note stating why Name Brand only… push it. You can make this happen if it is a cause on your behalf. I am grateful it isn’t with me. Not due to cost… just due to chaos. Thank God for multiple brain surgeries!!


    Comment by Heather Siebens — April 28, 2010 @ 12:24 PM

  2. Well Heather, I’ve never heard anyone say “Thank God for muiltiple brain surgeries!” 🙂 I can put you in touch with a few people who might disagree with you!

    With generics and me, ironically, the only place they seem to really matter is with pain pills.

    As for my AEDs and anti-depressants, I haven’t suffered any because of generics…but I think one of the main problems, as you inferred, is the word CHANGE. When you’re sensitive (I guess I’m not sensitive!) brain and body get accustomed to one combo, and it can really be thrown for a loop with a switch. When it’s multipe meds, I’m sure everything is sent off balance and that’s enough to make anyone have a seizire!!!

    Thanks for stoppping by…


    Comment by Phylis Feiner Johnson — April 28, 2010 @ 6:46 PM

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    About the author

    Phylis Feiner Johnson

    Phylis Feiner Johnson

    I've been a professional copywriter for over 35 years. I also had epilepsy for decades. My mission is advocacy; to increase education, awareness and funding for epilepsy research. Together, we can make a huge difference. If not changing the world, at least helping each other, with wisdom, compassion and sharing.

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