Epilepsy Talk

Epilepsy Generics: Yes, No or Maybe So? | June 24, 2021

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

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. I can’t recall the exact figures, but by law generics don’t have to contain 100% of the manufacturer’s drug. The filler and coating can also vary, which means that not only may there be less medication, but the rate of absorption may vary. I was bedridden for days, once, when the pharmacy had to make a substitution of “the exact same drug.” As I had run out, there was no way to ease from one to the other.

    Liked by 2 people

    Comment by HoDo — June 24, 2021 @ 10:47 AM

  2. Correct. A generic only needs to have 80% of the manufacturer’s drug. Then it has 20% of unknown “filler”.

    Liked by 1 person

    Comment by Phylis Feiner Johnson — June 24, 2021 @ 11:41 AM

    • Phylis I think the requirement is 80% by bioequivalence of the active ingredient (up to 125%) but the proportion of a pill or capsule that is active ingredient is relatively low so there would not be a 20% increase in “fillers.”

      For me the problem with generics is that the pharmacist may change his source from say one Indian company to another frequently depending upon availability and price. And those companies might buy the chemical itself from different chemical manufacturers depending upon availability and price. You could therefore be changing between 80% and 125% of bioavailable drug over a period of several months. This might not matter with say a simple analgesic or an antibiotic but with a drug like Dilantin (Phenytoin) where the difference between therapeutic levels and toxic levels is relatively small it matters a lot. However, the bioavailability of phenytoin is also affected by what you eat and some presentations should not be taken with very fatty meals for example! Not easy having epilepsy is it?!

      Liked by 1 person

      Comment by Michael H — June 24, 2021 @ 11:23 PM

  3. Because of this, I have my own “drug supplier,” a friend who happens to be a neurologist, pass on the free samples of Vimpat she gets from the pharmaceutical company. My own neurologist knows about this, but understands I can’t afford to pay for the brand name drug, and doesn’t trust the recently available generic. How crazy is this?

    Liked by 1 person

    Comment by qmfub — June 24, 2021 @ 12:19 PM

  4. The overall term for additions to meds is “excipients.” Filler, binder, color, taste. One common filler is lactose. Are you lactose intolerant? Too bad, we don’t have to tell you, your pharmacist, or your doctor.

    The FDA also provides grades of A or B. I’ll see what can be found about that unless, Phylis, you have the answer at hand.

    Liked by 1 person

    Comment by HoDo — June 24, 2021 @ 12:40 PM

    • The FDA labels of A B C D and X referred to the effect the drug might have on a fetus or a child during lactation. These letter grades have been replaced by narratives.

      Liked by 1 person

      Comment by HoDo — June 24, 2021 @ 12:52 PM

  5. Thanks Phylis for telling me about this. It now explains how I still have break through (noctural seizures) even though I have a VNS implant. I was at OHSU for testing. Can’t the Epilepsy Foundation or even the State or FDA say generics are illegal ? They aren’t a real drug because they have 80% of the real drug. We think we’re getting a break but it will COST us.

    Liked by 1 person

    Comment by Leon Chavarria — June 24, 2021 @ 12:52 PM

  6. Generics: Important Statement From The American Academy Of Neurology https://epilepsytalk.com/2020/03/06/generics-important-statement-from-the-american-academy-of-neurology/


    Comment by Phylis Feiner Johnson — June 24, 2021 @ 2:36 PM

  7. Interesting, my adult son here in Pa. has medicaid and it will only pay for the generic of Depakote. Thanks for this information.

    Liked by 1 person

    Comment by Bessie — June 24, 2021 @ 7:23 PM

  8. I agree with everyone’s opinion on the 80% and the ‘filler’ factor. After having been seizure free for 10 months, the pharmacy gave me the generic of Lamictal and I didn’t notice, resulting in immediate seizures. From experience, a professional but very straightford letter from your neurologist to the insurance company may help you get the Brand name drug. It can’t hurt to ask. I can’t speak to Medicaid, though.

    Liked by 1 person

    Comment by Roy Anthony — June 25, 2021 @ 6:11 PM

  9. Sadly, I’ve never been able to afford non-generic meds which is probably why my seizures have never really been controlled. That, and the lovely side-effects and various fillers, etc, have taken a real toll on my body.

    Liked by 1 person

    Comment by skolly9 — June 25, 2021 @ 6:59 PM

    • This is a long shot, but you might try appealing directly to the manufacturer of the full-strength drug. A friend with cancer did that and it worked.

      Liked by 2 people

      Comment by HoDo — June 27, 2021 @ 12:31 PM

  10. Unfortunately all the discount resources I know are for generics.

    The only idea I have is to try mail order from Canada. https://www.pharmacychecker.com/

    Liked by 1 person

    Comment by Phylis Feiner Johnson — June 26, 2021 @ 9:29 AM

  11. I never had as much problems with generics, as I do with brands. I only had a problem recently with my Zonisamide Compound when my Epileptologist tried to change the base/syrup it’s made with.

    Liked by 2 people

    Comment by trekkie80sgirl — June 27, 2021 @ 1:24 PM

  12. It’s the changes that will get you every time. For consistency, you need consistency. (Does that make sense?)

    Liked by 1 person

    Comment by Phylis Feiner Johnson — June 27, 2021 @ 1:27 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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