So, I didn't tell ya'll about the conversation I had with The Neurologist the other day when I took Sophie to a routine appointment there. We talked about arranging an ambulatory EEG, and somewhere in the discussion I asked her what the new drugs in the pipeline were looking like. I asked her about that drug that makes your lips blue and she laughed, ruefully. It's obviously a hard sell, she said. I still remember the titters that followed a discussion of this drug, Potiga, by an eminent Neurologist From the East Coast at last June's Epilepsy Pipeline Conference. They made me sick. That side effect is called Blue Person Syndrome. I'm not making this up. If you're one of those folks who believe in Science As It's Practiced in The Greatest Country On Earth, read about it here. If you're like me and believe yourself to be a part of a lifelong Monty Python skit, take my word and read on.
Evidently, there's another drug that The Neurologist is going to try on a few patients. It's called Fycompa. Some of you long-time readers or epilepsy drug enthusiasts might remember that I wrote about this drug a few years ago when it was newly approved by the Almighty FDA. In fact, it was over two years ago that I wrote that post. Please click on it and read it, particularly the end because -- well -- because I told you to.
Are you finished?
Remember that I wrote that in 2012. Sophie was 17. Back then,The Pediatric Neurologist and I batted around the idea of trying it for a bit, but I just couldn't do it. It had become my philosophy to decline all new drugs for Sophie's seizures unless Jesus Himself offered it to us. Cannabis was not even a twinkle in the eye of -- well -- no one I knew back then.
Are you still with me?
So yesterday, February 10th, 2015, The Neurologist brought Fycompa up but also shared with me that THEY (always capitalize the word THEY when you're referring to The Medical Powers That Be, The FDA, The CDC, etc.) have learned that the drug can cause homicidal ideation or rage. Before we start wondering how, exactly, THEY figured that out, let's look at the website for the drug (the banner at the top of the website is reproduced above without the words because apparently THEY don't like you copying THEIR pictures). If you did your due diligence, my post from 2012 highlighted the following side effects of Fycompa:
The drug does have some known adverse effects associated with this drug. The most common ones are anxiety, confusion, imbalance, double vision, dizziness, gastrointestinal distress or nausea, imbalance – some of which may lead to falls on some occasions, and increased weight. The effects of Perampanel on tasks involving alertness and vigilance, such as driving, were additive to the effects of alcohol itself. Multiple doses of Perampanel increased levels of anger, confusion, and depression, particularly when taken with alcohol. Fycompa may lead to euphoria and other similar feelings in some patients. Thus, the drug will be scheduled in the United States. Final labeling and information is not yet available.
As you can see, euphoria is enlarged by me because it's sort of an operative word.
Now go back and look at the Fycompa website today and notice the new BLACK BOX warning:
Keep reading about suicidal ideation which THEY make pains to attribute also to epilepsy itself. The cynic in me or maybe just the batshit crazy person in me believes that THEY are covering their asses. Basically, epilepsy and depression are roommates, so if you up and kill yourself one day while on Fycompa, I imagine THEY will point out that you might have anyway, without the drug. Notice as well that this drug is a Schedule III drug and remember that it is being prescribed for children and adults aged 12 and up. Remember that Marijuana is a Schedule I drug and that many in The Neurology World have denied many children who suffer from refractory epilepsy their blessing to try it and are only slowly coming round to even calling for studies, and that's only because families like mine are on the train that's left the station and THEY are trying to catch up.
But I digress.
My other favorite statement on the website is this: Anyone considering prescribing FYCOMPA or any other AED must balance the risk of suicidal thoughts or behavior with the risk of untreated illness.
Fycompa basically went -- in two years -- from being a drug that can cause Euphoria And Other Similar Feelings to one that can cause a person taking it to fly into a murderous rage. Oh, and you can take the drug if you're twelve years old.
You'd know what was up, basically, if I decided to try this drug on Sophie. Go ahead and kill me now, I'd say as I gazed into her big, dark eyes.
I can't count the number of times over the last couple of weeks I've read the words of citizen scientists, of scientists, of doctors and journalists and mommies and daddies and presidents and Oprahs and Willy Wonka himself blathering on about their trust in THE DATA AND THE EXPERTS.
What's my point? I think you know it. This is my experience, and I'd venture to say that it's tens of thousands of other people's as well. These are the facts. This is the world I interface with every single day and have done so for two decades, and it's insane.