Genereic Drug Switches, anyone suffer? Please contact me!!!!!

[grateful7677]

I am 32 years old. I suffered a TBI as a three year old. I have a plate in my head. I also have scar tissue. I believe I had/have behavior problems as well as social emotional issues as a child. I began having seizures at age 15. I started on TEGRETOL at age 15 at a dosage of 600mgs which was increased to 1200mgs at one point, and down to 200mgs for the past two years. I have been on APOTEX generic for several years. On April 8, 2010 I began having myoclonic seizures just like when I was 15, but more frequent and they lasted longer. I called one of the epilepsy foundations and my doctor. We figured out that my pharmacy switched the manufacturer they were using. So, without anyone telling me I was taking a generic from the manufacturer TEVA.

While all of this was happening, I received a newsletter in the mail from EPILEPSYUSA. While reading the article entitled WHAT'S IN YOUR PRESCRIPTION? MEDICATION SWITCHING IS A GROWING CONCERN IN SEIZURE CONTROL...I was dumbfounded. This was exactly what happened to me. It specifically mentions the bioavailability problems with TEGRETOL in the article. Is there anyone else who has suffered the same thing? Who is to blame? The drug companies? The pharmacies? The doctors. Not to mention, just a coincedence I suppose, I had not seen my doctor in 5 years, and wen to see him on March 29, 2010 and the seizures began on April 8, 2010 after I had been taking the new generic (Teva Inc).

I also suffered three tonic seizures and an atonic seizure, which I believe to be a direct result of increased Tegretol. They had me on 1000mgs of brand name Tegretol. I was still having myoclonics and the other worse seizures.

I had to go to the ER three times, I missed three weeks of work. My seizures were out of control for for over 23 days.

I am finally on 1000mgs of KEPPRA/Leveitracetamand 200 mgs of brand name TEGRETOL. My last seizure which was atonic occurred on April 27, 2010.

This has been a nightmare. Is there a class action suit against either the pharmacies or the manufacturer?

If anyone has had similar experiences, please contact me immediately.

I can only be grateful that I was able to get my seizures under control and have some quality of life back. It is for others who have dies or who are in worse circumstances than I...do I care to draw such attention to this matter.

Thank you for your time and consideration.

 

[PhylisFeinerJohnson]

This from the New York Times http://graphics8.nytimes.com/package…angenerics.pdf http://www.nytimes.com/2009/12/19/health/19patient.html?emc=eta1

"The American Academy of Neurology reports: “The AAN opposes generic substitution of anticonvulsant drugs for the treatment of epilepsy without the attending physician’s approval.

The FDA has allowed for significant differences between name-brand and generic drugs. This variation can be highly problematic for patients with epilepsy. Even minor differences in the composition of generic and name-brand anticonvulsant drugs for the treatment of epilepsy can result in breakthrough seizures.”

 

[skillefer]

Actually, problems between generic and brand name are not all that unusual. That's because generic can fluctuate in the actual amount of the active ingredient from 80%-120% of what is in the name brand. Also, the fillers can cause problems. Also, amounts can fluctuate between batches as well. the best way to avoid this is to have your doc note on the prescription that it is to be filled as written, or to be filled with name-brand only.

 

[Loopy Lou]

I had to get my neurologist to stipulate on my prescription that i get the brand name Lamictal instead of the generic Lamotrigene.

Every time i went to get my prescriptions i would have a different generic, sometimes 3 different generics in the same 4-week period (different dose amounts).

When i looked up the ingredients, they were all different. By this i mean the additives, colourings and all the other fillers and stuff they use.

 

[Cint]

"The American Academy of Neurology reports: “The AAN opposes generic substitution of anticonvulsant drugs for the treatment of epilepsy without the attending physician’s approval.

The FDA has allowed for significant differences between name-brand and generic drugs. This variation can be highly problematic for patients with epilepsy. Even minor differences in the composition of generic and name-brand anticonvulsant drugs for the treatment of epilepsy can result in breakthrough seizures.”

I was in to see my neurologist this morning because I had some breakthrough seizures. She made sure she asked me if I am taking brand name Keppra and Topamax, and of course, I told her yes I am. She went on to tell me the pharmacy is not supposed to prescribe generic unless contacting the dr. or it is written on the script.

 

[Cint]

I just found another link in regards to how medication switching can harm:

http://www.brainthunders.com/

 

[daisy.girl]

my pharmacy told me the opposite....they automatically give generic unless the doctor has specfically written brand name or do not subsitiute.

 

[seizingbeauty]

I don't remember the name of the thread but I went OFF about this subject a while ago. Had to switch pharmacies and everything. There are quite a few threads here about generic vs namebrand.

 

[lindinig]

I've had my pharmacy attempt to fill generic 3 times on me. One time, they claimed the insurance company wanted a written authorization from the doctor before they would pay for it! Even though he had been on it (and the same dose) for over 6 months! While I was on the phone with the pharmacy, I double-checked with them that they were filling the brand name and they said "no". I almost lost it with them! So, I thought I got it squared away. They called me back a few hours later to say the doctor approved it, and it was all set to pick up. I get to the pharmacy a few hours later, and they haven't filled it, and they said they were waiting for the doctor to approve it and the insurance rejected it! I almost came through the window at them (it was a particularly stressful day). One of the pharmacy assistants got on the phone with the ins. company (I saw her on the phone, but can't figure she was actually talking to anyone, since it was definitely after insurance company hours at the time I went to pick up this prescription). So, They cleared that up for me, and I go to the counter to pay, and the assistant rings it up as $10. I said they filled it with generic and it's supposed to be a brand name! I was not a happy camper by this time. I had wasted more than 1/2 hour trying to get one prescription filled while my son was post-ictal! And he was with me because he was not able to stay home by himself! It's like you have to keep on your toes when dealing with pharmacies because they are always trying to pull one over on you!

My son did not do well with generic. He was very spacey and forgetful. I don't remember him having breakthrough seizures though. I just remember when we switched to the brand name, his spaciness and forgetfulness went away. He has some memory problems, but not to the degree that he had before.

 

[daisy.girl]

I was doing a little research and came across this:

Generic Drugs, Are They as Good as Brand Names?


Medical Author: Melissa Stoppler, M.D.
Medical Editor: Barbara K. Hecht, Ph.D.

Generic drugs are copies of brand-name drugs that have exactly the same dosage, intended use, effects, side effects, route of administration, risks, safety, and strength as the original drug. In other words, their pharmacological effects are exactly the same as those of their brand-name counterparts.

An example of a generic drug, one used for diabetes, is metformin. A brand name for metformin is Glucophage. (Brand names are usually capitalized while generic names are not.) A generic drug, one used for hypertension, is metoprolol, whereas a brand name for the same drug is Lopressor.

Many people become concerned because generic drugs are often substantially cheaper than the brand-name versions. They wonder if the quality and effectiveness have been compromised to make the less expensive products. The FDA (U.S. Food and Drug Administration) requires that generic drugs be as safe and effective as brand-name drugs.

Actually, generic drugs are only cheaper because the manufacturers have not had the expenses of developing and marketing a new drug. When a company brings a new drug onto the market, the firm has already spent substantial money on research, development, marketing and promotion of the drug. A patent is granted that gives the company that developed the drug an exclusive right to sell the drug as long as the patent is in effect.

As the patent nears expiration, manufacturers can apply to the FDA for permission to make and sell generic versions of the drug; and without the startup costs for development of the drug, other companies can afford to make and sell it more cheaply. When multiple companies begin producing and selling a drug, the competition among them can also drive the price down even further.

So there's no truth in the myths that generic drugs are manufactured in poorer-quality facilities or are inferior in quality to brand-name drugs. The FDA applies the same standards for all drug manufacturing facilities, and many companies manufacture both brand-name and generic drugs. In fact, the FDA estimates that 50% of generic drug production is by brand-name companies.

Another common misbelief is that generic drugs take longer to work. The FDA requires that generic drugs work as fast and as effectively as the original brand-name products.

Sometimes, generic versions of a drug have different colors, flavors, or combinations of inactive ingredients than the original medications. Trademark laws in the United States do not allow the generic drugs to look exactly like the brand-name preparation, but the active ingredients must be the same in both preparations, ensuring that both have the same medicinal effects.

Reference: Office of Generic Drugs, Center for Drug Evaluation and Research, U.S. Food and Drug Administration (FDA), Generic Drugs: What you need to know. 2009.


Last Editorial Review: 9/28/2009

 

[Nakamova]

Unfortunately, that's just not the case for epilepsy drugs -- the quality of the med may be equivalent between brand and generic, but there seems to be a significant variation in the quantity of the active ingredient in the generics. The variation may be sanctioned by the FDA, but since many people with seizure disorders are sensitive to even small variations in dosage, the generics are dangerously unreliable in this respect. This isn't a myth -- my neurologist goes out of her way to specify brand-only/no substitution to the pharmacy.

 

[PhylisFeinerJohnson]

Linding, I believe there's a line at the bottom of the doc's prescription pad where he/she can indicate that a brand name is requested, not a generic.

 

[PhylisFeinerJohnson]

daisy.girl,

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.

The American Academy of Neurology reports: “The AAN opposes generic substitution of anticonvulsant drugs for the treatment of epilepsy without the attending physician’s approval. The FDA has allowed for significant differences between name-brand and generic drugs. This variation can be highly problematic for patients with epilepsy. Even minor differences in the composition of generic and name-brand anticonvulsant drugs for the treatment of epilepsy can result in breakthrough seizures.”

http://graphics8.nytimes.com/packages/pdf/health/aangenerics.pdf
http://www.nytimes.com/2009/12/19/health/19patient.html?_r=1&emc=eta1

 

[Ruth]

Also, amounts can fluctuate between batches as well. the best way to avoid this is to have your doc note on the prescription that it is to be filled as written, or to be filled with name-brand only.

I have no problem with the generic. In fact with the less medicine in it, I feel better. Everyone is different, what works for one person, might not work for another.

If you want brand name only, you have to have your doctor write it down, like skillefer says.

 

[daisy.girl]

I am inquiring because I have just been prescribed topamax and the pharmacy gave me the generic.
Phyllis....I read the article from your link....and there was a link in the article to this site.

http://www.prnewswire.com/news-rele...-and-increased-seizure-activity-79491467.html

The more I read the more confused I get....so many articles say no difference in the brand and generic and just a few say that patients on epilepsy meds have complained but little to no scientific research to back what patients have said.

 

[alivenwell]

From reading fillers between brand name and its generic counterparts, the fillers are listed in alphabetic order. For our food, various ingredients and fillers are listed from greatest to lowest quantities.

If I could buy a cheaper generic with EXACTLY the SAME fillers that worked, I'd do it. I'm all for saving extra money on a lifetime chronic illness 'cause I really want to retire at some point in my life.

I simply don't do generics; and once time when I did, I made sure the pills that worked were made by the exact same generic manufacturer. No second guessing on this issue. There's way too much at stake.

 

[PhylisFeinerJohnson]

daisy.girl, I must admit...it IS confusing. I myself am ony affected by very few generics (non of them AEDs.) But, when when you read someone (with no political agenda) saying that AED generics are up to 20% less effective, it has to give you cause for pause.

 

[lindinig]

Linding, I believe there's a line at the bottom of the doc's prescription pad where he/she can indicate that a brand name is requested, not a generic.

I made sure he added the "No Substitutions" notation to the script. I was on the phone with him when he did it.

 

[Inaara]

The Va here in Texas constantly switches brand name for generic and switches varieties of generics based on whichever company is cheapest at the time they order and I have had nothing but problems with my meds since I've been in Texas. In Seattle, my doctors refused to give me anything but brand name and I never had any problems whatsoever (took topiramate up there for years for migraines and had very few until my head injury in 2007).

I hope to god that when I get to Oklahoma, I can get the docs there to actually listen when I tell them that the generics have been making my life hell, but we'll see.

 

[PhylisFeinerJohnson]

linding, that's FRAUD. You're being suckered and taken advantage of. Were it me (and it isn't) I would have either my doc speak to the head pharmacist and explain the importance of this...or make copies of the precriptions and the bottle labels and then call top management of the drug chain and tell him/her that your pharmacist is guilty of substitution and misrepresentation. If all else fails, send a letter (with a copy of the scripts and the bottle labels) to the BBB with a cc: to your local EFA and doc.

This is actually a case of bait and switch. And of course the fat cats get richer while you have breakthrough seizures.

Turn that frustration into something proactive. Maybe you could even start a petition. I get ballistic just thinking about how you're being taken advantage of. (Big breath.)

Ok, end of rant...