Epilepsy Talk

Prescription Switching. Do You Know What You’re REALLY Getting? | October 30, 2019

How many times have you had a prescription switched without your knowledge or permission?

Not just switched to a generic version of the prescribed drug, but to a different drug altogether.

Yet the practice of swapping out medications is perfectly legal in most states.

It’s called “therapeutic substitution” and it happens when a patient is switched from to a cheaper medication in the same class of drugs.

With therapeutic substitution, a pharmacist substitutes a chemically different drug for the drug that the physician actually prescribed.

The drug substituted by the pharmacist belongs to the same pharmacologic class or to the same therapeutic class.

However, since the two drugs have different chemical structures, there are potentially adverse outcomes for the patient. 

(Sometimes you can even tell by the shape or color of the pill!)

The move may be from a name brand to a generic, but it also can be to a different medication entirely.

And why are the pharmacies switching you?

To save money, of course.

But then there are the insurance companies — putting pressure not only on the pharmacies but on doctors, too.

“Pharmacies are directly reimbursed by insurance companies and make more money from generics even though the sticker price for brand-name drugs is higher,” says Dr. Robert Reneker, an urgent care physician.

“I’ve had pharmacies tell me a drug isn’t on the formulary when I’ve already checked with the insurance company and know that it is. The switch to a cheaper substitute is motivated purely by profit.”

The one benefit for you may be smaller co-pays.

But two-thirds of people who reported having meds switched in a National Consumers League survey said they weren’t consulted.

Of those, 40 percent said the new drug was not as effective, and a third said it had more side-effects.

“It’s not okay for your insurance company or pharmacist to change your drugs without your knowledge,” says NCL Executive Director Sally Greenberg.

But, unfortunately, therapeutic substitution is likely here to stay — meaning you need to be on the lookout to make sure you’re not harmed by the practice.

Some suggestions:

Ask your doctor to write “DAW” on the prescription, which stands for Dispense As Written.

Have your pharmacist put a note in your records that says you don’t want any prescription switched without your approval.

If you’ve noticed the pharmacy has switched your medication anyway, get your doctor’s office on the phone to explain why you need the specific drug that was prescribed.

If your prescription HAS been switched, you should ask your pharmacist these questions:

Is this the exact drug my doctor prescribed?

Will this switch affect my health?

Why are you switching my prescription?

Have you notified my doctor of this switch?

Will the new drug work better?

How will I know if it does or doesn’t?

Are side-effects different from those associated with the original prescription?

How will it interact with other medications or supplements I might be taking?

An Epilepsy Action survey showed that of those given alternative versions of their usual anti-epileptic drugs in one year, almost a quarter (23 per cent) said their epilepsy got worse. Most of these people reported an increase in the number of seizures they had.

Almost half (43 per cent) of those who spoke to their pharmacist were told that there was nothing to worry about and that all versions were the same. One in seven (15 per cent) found that pharmacists were not aware of the issue.

In its survey, Epilepsy Action asked people whether they spoke to their doctor after having been given a different version of their AED. Almost a third (31 per cent) were told there was nothing to worry about. Nearly a quarter (22 per cent) were told all brands were the same and one in six (16 per cent) found their doctor was not aware of the issue.

One good piece of news. Restricting substitution of epilepsy brand-name drugs has been filed in eight states.

(Connecticut, Georgia, Iowa, Massachusetts, Michigan, Minnesota, New Jersey and New York). Let’s hope more states follow their directive.

NOTE: This letter has been created by the Epilepsy Foundation to make explicitly sure that no substitutions are made to your prescription without full consent by you and your doctor.

You might want to make a copy of it for your files.

Dear Pharmacist: 

Thank you for providing me with the valuable service of filling my needed prescriptions. The purpose of this letter is to let you know that I have epilepsy and it is vital that I receive the same medication from the same manufacturer monthly in order to maintain the expected level of seizure control and side-effects.

Please ensure that no changes are made to my medications, including a change in manufacturer, without prior consent from my physician and myself. Please note this request in my file. To assist you, I have listed below the name, manufacturer, and dosage of the medications I am currently taking.

Thank you very much,

Your Signature________________________________________

Today’s Date__________________________________________

Your Printed Name_____________________________________

Phone Number________________________________________

Physician’s Name______________________________________

Phone Number________________________________________

Brand Name__________________________________________

Generic Name_________________________________________

Manufacturer _________________________________________

Dosage ______________________________________________

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  1. My son was switched from name brand Phenytek to brand name Dilantin which was a huge difference. His levels went from 23 to 35 bc the Dilantin metabolized differently. Thankfully he was put back on the Phenytek and his levels returned to their normal levels. The Dr. would not believe it was due to the change in med brands but finally realized the increase in his levels was brand specific. I also talked to the pharmacy and they are on board now but it seems to me that a mom with no medical experience wouldn’t be more knowledge than the Drs but often we are.

    Liked by 2 people

    Comment by Tami — October 30, 2019 @ 2:20 PM

    • A hundred years ago when I was on Dilantin (I don’t think they even had generics then), I went into a three day “sleep,” because I was toxic.

      Did anyone think to do a blood panel on me?

      At 12 years old and 100 pounds, should I have been taking the same dose as an adult?

      I don’t think so.

      Liked by 1 person

      Comment by Phylis Feiner Johnson — October 30, 2019 @ 3:25 PM

    • Yes I have to agree with you there!! But I came to realize they bumped my BRAND NAME DILANTIN to the NO NAME DILANTIN AS WELL!! I came to discover that when I took a really good look at my medication and began to very very slowly wean myself off!! I found once I weaned myself completely off of the .5 of trazodone and .5 off of the clobazam and then 200mgs off the carbamazepine I began to actually feel again and my sodium chloride levels also began to rise and stay in the normal range as well!! I do however still have a tiny bit it the numbness in my left foot and can actually tell when my body is becoming low on sodium as well. Also the brand name “ATIVAN” made me want to climb the wall!!!!! But the funny thing is even my daughters are the same way!! Therefore I ended up going back and asking for the NO NAME “ATIVAN” called “LORAZEPAM” at the most lowest dose possible and only when needed as well!! I had to laugh at the doctor because she said “I am no longer An epileptic” Lol. I told her “UMMMMM NO!! ONCE AN EPILEPTIC ALWAYS AN EPILEPTIC!! Maybe I’m due for a change of medication. She never put me on the vitamin B12 either, but she did keep me on the iron. It was at that point she did say “it was the carbamazepine and the clobazam and trazadone that made me numb”. And wanted me to also take something for sleeping. She prescribed it, but I never did receive it from my pharmacist. I did however get prescribed the “lorazepam” BUT ONLY WHEN NEEDED!!!! I had no arguments there. Apparently I also lost more weight as well!! No I’m just hopeing I can get down to the same dose I was always at with the tegretol and Dilantin and PRAYING I CAN CUT THE CLOBAZAM DOWN AND THE TEGRETOL DOWN BY 200 more mgs 🤞🏽🤞🏽🤞🏽🤞🏽🤞🏽. GOOD LUCK AND PLEASE KEEP ME I FORMED!! Take care 😊🙏🏼🦅😇💗😊

      Liked by 1 person

      Comment by Kathy S.B — November 3, 2019 @ 11:25 PM

      • I think you’re on the right track, Kathy.

        And knowing your body is paramount to what the doc “knows” or thinks.

        As you know, you have to be careful titrating yourself down.

        But, I figure you’re already aware of that.

        Liked by 1 person

        Comment by Phylis Feiner Johnson — November 4, 2019 @ 9:52 AM

      • PHYLIS I HAVE A STORY FOR YOU ABOUT THIS!!!!!! I realized after everything I went through for the past 5 years (STOMACHACHES AND ALL EVEN HYPONATREMIA) guess what I had “SPECIAL AUTHORIZATION” ALL THIS TIME!!!!!! BUT the I have ONLY BEEN GETTING THE GENERIC VERSION!!!!!! When I went to say something in regards to the pharmacy I phoned in and had my “PERIODIC TABLE AND ALL MY OLD PILL PACKS READY!!” And YUP THERE IS A HUGE DIFFERENCE IN THE DIFFERENCE BETWEEN GENERIC AND BRAND NAME MEDICATION INCLUDING COST!! And FILLERS!!!!!! I couldn’t believe it I SUFFERED FOR 5 YEARS ON GENERIC MEDICATION AND I HAD SPECIAL AUTHORIZATION FOR BRAND NAME MEDICATIONS!!!!!!! I don’t think I have EVER WANTED TO SCREAM AND BLEEP BLEEP BADLY, but I can’t do that!!!!!!! 2 months after they put me on the generic brand medication I had a seizure and fell down 4 CEMENT STAIRS!! I got a major concussion and I couldn’t eat because of the PAIN IN MY STOMACH EVERY TIME I TOOK MY MEDICATION!!!!!!! WOW HOW MANY OTHER PEOPLE HAVE TO GO THROUGH THAT KIND OF UNEXPLAINABLE PAIN??!! That is so NOT RIGHT!! Generic medications go through the SYSTEM BANG!! Where as “BRAND NAME MEDICATIONS” are TIME RELEASED!!!!! Yet the one brand name medication costs $185.00 and the generic version costs $85.00!!!!!! I wanted to scream and bleep bleep but all I could think about was ALL OF MY PEOPLE AND THE SICK PEOPLE AND LITTLE ONES!!!!!! MY POOR FAMILY!! They had watch me suffer all on account of SOMEONE FEELING SUPERIOR TO ME!!!!! What about others? That’s SO WRONG!! I just wanted to let you know that’s all. Thank you for ABSOLUTELY EVERYTHING YOU DO FOR ME AND US!!!!!! 😘🙏🏼🦅😇🙏🏼😘


        Comment by Kathy S.B — November 8, 2019 @ 7:06 PM

      • Unfortunately, few have access to the “Do Not Substitute” mandate on their scripts. And I’m soooo sorry you had it and didn’t know about it.

        But yes, think of all the people who trudge along with extended side-effects.

        That’s not to say that the name brand doesn’t have side-effects. It does. And it would be naive to think otherwise.

        And they are not all time release. But as you say, it’s a bit more comforting to have the known brand without any unknown “filler”.

        Liked by 1 person

        Comment by Phylis Feiner Johnson — November 8, 2019 @ 8:18 PM

      • I just don’t think the right people (decision makers) realizes how fast their hurting people nowadays!! My poor husband couldn’t believe I could actually still draw out the period table and on and on. Then pull out all of my medication packages!! (I don’t like throwing the part that says the medication on it away) then catch it on a memory and a whim!! THANKS TO YOUR FORUM!! 🙏🏼🦅🙏🏼💗. When I was 15 I quit taking my medication and opted for a “grandmal seizure”instead because of the REALLY BAD STOMACH ACHES I GOT!! When the doctors came in and questioned me as to “why i wasn’t taking my medication?!” I told them because it hurt my stomach too bad!! Finally they spoke to one another and they came in and told me they’ll try me on a different kind of tegretol medication but to NEVER EVER CHANGE IT!!!!! So I took it and it worked! Without my knowledge my medication was changed in November 2014. In February 2015 I had my seizure where I fell down all my front door steps and ended with a major concussion and at the same time to go and see an internal specialist. He never caught because My medication was just changed back to the generic brand. I was go to see him because of stomach aches!! Darn you would think I would have caught it!! But I didn’t until last week when I was going threw my pill pack labels. Then I caught it. I phoned the pharmacy and asked them “Howcome my medication is changed to generic?” I was told I would have to pay About $100.00 more for the brand name if I wanted it. Then I told them what I was told. Turned out I was right!!!!!!! It’s too much medication all at once!! Where I needed it to work slowly throughout the day instead!!!!! I knew there was something wrong. It just upsets me to think of all the people who can’t figure that out for themselves and have to suffer the way I am!!!!! THIS IS SO WRONG!! Plus “it’s all ABOUT MONEY”!! What ever happened to just content wellness? Oh ya and NORMALLY they can’t get me to stop bleeding whenever I have my bloodwork done (weekly) today though they could hardly get my bloodwork. That’s so weird. Thank you Phylis and please know YOU ARE HELPING ALL OF US AND YOURSELF!! 😘🙏🏼🦅😇💗💞😘😘😘😘😘😘😘

        Liked by 1 person

        Comment by Kathy S.B — November 8, 2019 @ 8:41 PM

      • Follow the money. Of course, the pharmacy makes more on the generics. And of course, they’re a profit center, not “Good Will”. And of course, you have to be diligent.

        But you saw the light (albeit after having a head trauma from a concussion), and then stood up for yourself.

        No one else, I’m sorry to say, is going to do that for you Kathy. You’re on your own as an advocate.

        But, at least we have each other to listen to and learn from and advise.

        Liked by 1 person

        Comment by Phylis Feiner Johnson — November 8, 2019 @ 9:26 PM

      • I think it was more upsetting that it only took 5 years to figure that out. Plus honestly it did help to cut my medication down too!! I was on way too many medication. I guess being raised by my old people made me instantly think of my own children, grandchildren, and hopefully my great grandchildren someday as well 🙏🏼🦅😘. THANK GOODNESS I TOOK ALL THE SCIENCES AND MATH!! Lol

        Liked by 1 person

        Comment by Kathy S.B — November 8, 2019 @ 9:32 PM

      • Well, it’s never too late to right a wrong. Especially when your health is involved.

        Liked by 1 person

        Comment by Phylis Feiner Johnson — November 8, 2019 @ 9:36 PM

      • You right Phylis 😘 thank you 😊🙏🏼🦅😇😘💞

        Liked by 1 person

        Comment by Kathy S.B — November 9, 2019 @ 9:57 AM

  2. Great job on this post. Thank you.

    Liked by 2 people

    Comment by Flower Roberts — October 30, 2019 @ 4:50 PM

  3. I had this same issue with Lamictal. My previous insurance company refused to pay for my name brand Lamictal. So, they switched me to the generic without informing me or my doctor. I cannot take the generic because it causes me to have breakthrough seizures. My current insurance company was nice enough to put the name brand Lamictal on their formulary for me.

    Liked by 2 people

    Comment by jerracy — October 30, 2019 @ 9:03 PM

  4. walmart pharmacy kept switching my dilantin to the generic even though my records show a “must be name brand” order from my doctor . i am allergic to the generic. i had had to fight with my insurance company to get them to cover it or be sued for millions when a seizure finally killed me! but since the pharmacy kept switching me even though it was finally covered, i had to find a different pharmacy and i now don’t have anymore problems with that .

    Liked by 2 people

    Comment by amy renee guenette — October 31, 2019 @ 2:30 PM

    • I actually have heard stories about Walmart switching to generics.

      They switched my husband to generic Lidoderm.

      Sure, it works…some. But not as well. 😦


      Comment by Phylis Feiner Johnson — October 31, 2019 @ 2:41 PM

    • I did that as well!!!!! I was SO HURT, FRUSTRATED AND EVEN MAD AT ONE POINT!! Until I finally thought “heck with this I’ll go somewhere else where the pharmacist will take the time to explain things to me without making me disregarded and consistently keeping me OVER MEDICATED!!!!!!! I thought we were all a team?! BOY WAS I EVER WRONG!!!!!!! Turned out the no name Ativan worked best for me because my body didn’t have a reaction with the compounds used in it, where it did with the brand name “ativan”. However I don’t go through hardly any. My problem was the pharmacist kept giving me the “BRAND NAME ATIVAN” and ended up actually hurting and hindering me more than helping me.

      Liked by 1 person

      Comment by Kathy S.B — November 3, 2019 @ 11:33 PM

      • That’s kind of unusual. Usually, they’re quick to put you on the generic.

        Perhaps the 20 per cent “filler” in the generic agreed with you!

        Liked by 1 person

        Comment by Phylis Feiner Johnson — November 4, 2019 @ 9:57 AM

      • Yes maybe it did for that one medication, but I hardly ever take it because as you know I am trying to not have to take so many medications as I particularly don’t like taking them. However I understand it’s a need rather than a want. Thank you 😊

        Liked by 1 person

        Comment by Kathy S.B — November 4, 2019 @ 12:45 PM

      • I agree. Nobody likes to rely on any “foreign” substance, no matter what it is.

        Liked by 1 person

        Comment by Phylis Feiner Johnson — November 4, 2019 @ 1:31 PM

  5. According to the FDA generic medications have to come with 10% above or below the drug level of the name brand. That is a twenty percent delta that for many of us on medications, such as dilantin, will cause our blood levels to drop below what is needed leading to seizures or leave us in a toxic state that can be harmful to the body. Fortunately, my doctor realized all of this and made sure I received the brand name. When the pharmacy tries to give me the generic I refused to accept it. Make sure you check with your doctor about the range your blood level needs to be before accepting a generic version of a medication.

    Liked by 2 people

    Comment by Jon Sadler — November 2, 2019 @ 9:21 AM

    • I have to go for bloodwork every Friday. And in the afternoon that day (due to another special persons assistance) I am able to find out by that afternoon what my levels are in my province 🙏🏼🦅😘

      Liked by 1 person

      Comment by Kathy S.B — November 3, 2019 @ 11:35 PM


      Liked by 1 person

      Comment by Kathy S.B — November 8, 2019 @ 9:56 PM

  6. Thanks Jon for the well informed advice.

    You saw the substitution form above, but it’s best to have the doctor write “do not substitute” on the prescription itself.

    Liked by 1 person

    Comment by Phylis Feiner Johnson — November 2, 2019 @ 10:51 AM

  7. Thank you SOOOOO MUCH PHYLIS!! 🙏🏼🦅💗😊

    Liked by 1 person

    Comment by Kathy S.B — November 3, 2019 @ 11:36 PM

  8. Also here in Alberta (I’m not sure about CANADA) are changing things from wanting donate a persons body once they’ve passed on to having to ask “NOT TO BE DONATED AFYER YOUR PASSING”!

    Liked by 1 person

    Comment by Kathy S.B — November 8, 2019 @ 9:43 PM

  9. Well that’s what our “SOCIETY” has come to!! After reading what HoDo has sent it leaves me NOW REALIZING WHY THEIR CHANGING IT!!!!!


    Comment by Kathy S.B — November 9, 2019 @ 9:55 AM

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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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