Generic vs Brand
Some doctors are still in the dark about it (like my Sports Med doctor), which scares the shit out of me, but those being treated with AEDs (antiepileptic drugs) and their neurologists have found something disturbing.
At the beginning of this semester, after being clean and free of the biggy seizures for months, I started up again. It pissed me off. I wanted to be ready and stable to take on this semester with my brain intact. Dr. Sinha had put on his scripts that I should be put on Lamictal (the brand name AED). He had already heard of cases in the epileptological community of the generic's weaknesses. The pharmacists overlooked this and put me on Lamitrogine (the generic). We only found this out when I started groing through my meds and looking at the paperwork for the perscriptions to see what needed to be bumped up.
That's when I recognized the fuck up.
I called Dr. Sinha as soon as I found out and my mother called the pharmacy. Not only did they not recognize the note on the script SPECIFICALLY asking that I take the brand name the insurance immediately suggested that I go on the generic so it would cost them less money.
What. The. Fuck?
Now I started taking Lamictal again the beginning of this month and I don't believe it is fully in my bloodstream. I remember the starter pack had me take nearly a month working up to the full dose. I had a weird semi-conscious moment in Biology last week... the first time I've had a noticeable seizure in class - other times it's just been the leg tremors/partials. She didn't figure out that something was wrong until class ended and I did not get out of my seat. The poor woman had no idea what was going on. I could feel her voice buzzing in my ears, like I picked up the vibrations and wavelengths of her speaking, but couldn't make out the words. My sight was completely shot, but I could feel her touch my wrist and being uncomfortable because of it. I snapped out of it, my words mixed up and slow, wide-eyed, and disoriented for a bit before even I figured out what had happened. When I was able to hear her saying that I needed to get out of the room (the next class was coming in) and see her staring me in the face. Then she asked what was going on.
"I think I just had a seizure."
"Excuse me?"
"A seizure."
"Oh... I thought you had fallen asleep."
Apparently my eyelids had been fluttering and my mouth gaped open. When she could see my eyes she said they were rolling up into my head and then randomly coming back down... all the while sitting bolt upright.
I can't sleep sitting up for the life of me. Believe me, I've tried. Especially in high-school. :P
So that's my major epilepsy update for today.
If you know ANYONE taking AEDs, please tell them about this. I've been told doctors have been sending the FDA medication-failure reports right and left yet it's still sitting on the shelves. If you Google it you will find numerous cases like mine being told from other patients' (and a few parents of patients) point of view. My situation is not uncommon. Dr. Sinha said that I was the second patient of his that week who had been switched over who had a seizure.
I am terribly afraid it's going to take something horrible like an epileptic who has been controlled for years and has their license back is going to have a seizure while driving and getting into an accident, killing themselves/others/both before the FDA does something about it.
Something interesting I found through the FDA website:
http://www.fda.gov/cder/drug/MedErrors/no_tradename.pdf
If someone could explain to me what Reference Listed Drug (RLD) means in the Orange Book in layman's terms would be appreciated.
At the beginning of this semester, after being clean and free of the biggy seizures for months, I started up again. It pissed me off. I wanted to be ready and stable to take on this semester with my brain intact. Dr. Sinha had put on his scripts that I should be put on Lamictal (the brand name AED). He had already heard of cases in the epileptological community of the generic's weaknesses. The pharmacists overlooked this and put me on Lamitrogine (the generic). We only found this out when I started groing through my meds and looking at the paperwork for the perscriptions to see what needed to be bumped up.
That's when I recognized the fuck up.
I called Dr. Sinha as soon as I found out and my mother called the pharmacy. Not only did they not recognize the note on the script SPECIFICALLY asking that I take the brand name the insurance immediately suggested that I go on the generic so it would cost them less money.
What. The. Fuck?
Now I started taking Lamictal again the beginning of this month and I don't believe it is fully in my bloodstream. I remember the starter pack had me take nearly a month working up to the full dose. I had a weird semi-conscious moment in Biology last week... the first time I've had a noticeable seizure in class - other times it's just been the leg tremors/partials. She didn't figure out that something was wrong until class ended and I did not get out of my seat. The poor woman had no idea what was going on. I could feel her voice buzzing in my ears, like I picked up the vibrations and wavelengths of her speaking, but couldn't make out the words. My sight was completely shot, but I could feel her touch my wrist and being uncomfortable because of it. I snapped out of it, my words mixed up and slow, wide-eyed, and disoriented for a bit before even I figured out what had happened. When I was able to hear her saying that I needed to get out of the room (the next class was coming in) and see her staring me in the face. Then she asked what was going on.
"I think I just had a seizure."
"Excuse me?"
"A seizure."
"Oh... I thought you had fallen asleep."
Apparently my eyelids had been fluttering and my mouth gaped open. When she could see my eyes she said they were rolling up into my head and then randomly coming back down... all the while sitting bolt upright.
I can't sleep sitting up for the life of me. Believe me, I've tried. Especially in high-school. :P
So that's my major epilepsy update for today.
If you know ANYONE taking AEDs, please tell them about this. I've been told doctors have been sending the FDA medication-failure reports right and left yet it's still sitting on the shelves. If you Google it you will find numerous cases like mine being told from other patients' (and a few parents of patients) point of view. My situation is not uncommon. Dr. Sinha said that I was the second patient of his that week who had been switched over who had a seizure.
I am terribly afraid it's going to take something horrible like an epileptic who has been controlled for years and has their license back is going to have a seizure while driving and getting into an accident, killing themselves/others/both before the FDA does something about it.
Something interesting I found through the FDA website:
http://www.fda.gov/cder/drug/MedErrors/no_tradename.pdf
If someone could explain to me what Reference Listed Drug (RLD) means in the Orange Book in layman's terms would be appreciated.