Wandering Thoughts

November 1, 2015

Flattened

Filed under: Aortic Valves,Reactive Arthritis — terence @ 2:17 pm
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The seizure meant more medicine. Both to reduce the risk of another one, and to try and eliminate the spells of confusion I’ve been having ever since surgery. That one fully fledged seizure had the neurologists more inclined, even if still uncertain, to classify the episodes of confusion as a type of epilepsy.

And so I started adding anti-epileptics on top of Warfarin, Losartan, and Humira. First came Sodium Valproate, smooth purple pills in soft plastic foil packaging. I was so worried about the side effects—hallucinations, depression, strange behaviour—that, because Jo was travelling, I asked a colleague to call Jo if I seemed weird, and asked a friend to check in on me.

There were no side effects. Nothing. And that was the problem with Sodium Valproate. I didn’t have any more tonic-clonic seizures, but I’d only ever had one in the eight years since surgery, so they weren’t frequent events. And the spells of confusion, which were the best yardstick of treatment efficacy, kept trundling through my life as they always had.

And so I added Kepra, starting on a low dose and slowly increasing it. Kepra did something, perhaps: about the time I got to a therapeutic dose I went six weeks without any spells of confusion. This was at least twice as long as I’d ever gone before. Jo and I started to hope intensely. I would be able to drive again. Jo wouldn’t have to accompany me every surf. Life would be normal in its unusual kind of way. But then the spells came back.

So I kept upping the dose of Kepra, but with this came a mild lethargy, and although the spells were less frequent they were still quite frequent.

Next I started Tegretol, increasing the dose while I weaned myself off Sodium Valproate. And now I’m on the full dose, with the useless Sodium Valproate no longer in my pill box. As I type this I’ve been about three weeks (and carefully counting) without any confused spells. This is long enough for the medicine to be promising me, but not yet making any guarantees—I’ve been three weeks often enough before. And I now know that even six weeks doesn’t necessarily mean problem solved.

Tegretol hasn’t been easy either. It impedes the absorption of Warfarin, so I’m on an ever increasing dose of Warfarin, wondering if my liver can cope (although there’s no medical reason to think it can’t). Worse, Tegretol is flattening me, in a slightly sad sort of way. It makes it hard to find the energy. It makes chores feel like a chore. It makes it harder to believe in things in the way you need to believe. This isn’t insufferable, or impenetrable: after surfing I still glow; and happy conversations still bounce along. Reading still works, more or less. And if I try I can push back against the effect.

So, here I am, mostly hoping the Tegretol works, but part of me hoping it doesn’t. Because if it doesn’t I will wean myself off it as-fast-as-I-can.

Disclaimer 1: I realise things could be worse.

Disclaimer 2: My medical situation is my medical situation. Yours will be different. Make your choices on the basis of what medical professionals tell you, not what you read here.

January 17, 2009

Whether you take as many pills as I do or not…

Filed under: Ramblings and Musings — terence @ 9:48 am
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this makes for disturbing reading

In recent years, drug companies have perfected a new and highly effective method to expand their markets. Instead of promoting drugs to treat diseases, they have begun to promote diseases to fit their drugs. The strategy is to convince as many people as possible (along with their doctors, of course) that they have medical conditions that require long-term drug treatment. Sometimes called “disease-mongering,” this is a focus of two new books: Melody Petersen’s Our Daily Meds: How the Pharmaceutical Companies Transformed Themselves into Slick Marketing Machines and Hooked the Nation on Prescription Drugs and Christopher Lane’s Shyness: How Normal Behavior Became a Sickness.

To promote new or exaggerated conditions, companies give them serious-sounding names along with abbreviations. Thus, heartburn is now “gastro-esophageal reflux disease” or GERD; impotence is “erectile dysfunction” or ED; premenstrual tension is “premenstrual dysphoric disorder” or PMMD; and shyness is “social anxiety disorder” (no abbreviation yet). Note that these are ill-defined chronic conditions that affect essentially normal people, so the market is huge and easily expanded. For example, a senior marketing executive advised sales representatives on how to expand the use of Neurontin: “Neurontin for pain, Neurontin for monotherapy, Neurontin for bipolar, Neurontin for everything.”[15] It seems that the strategy of the drug marketers—and it has been remarkably successful—is to convince Americans that there are only two kinds of people: those with medical conditions that require drug treatment and those who don’t know it yet. While the strategy originated in the industry, it could not be implemented without the complicity of the medical profession.

Melody Petersen, who was a reporter for The New York Times, has written a broad, convincing indictment of the pharmaceutical industry.[16] She lays out in detail the many ways, both legal and illegal, that drug companies can create “blockbusters” (drugs with yearly sales of over a billion dollars) and the essential role that KOLs play. Her main example is Neurontin, which was initially approved only for a very narrow use—to treat epilepsy when other drugs failed to control seizures. By paying academic experts to put their names on articles extolling Neurontin for other uses—bipolar disease, post-traumatic stress disorder, insomnia, restless legs syndrome, hot flashes, migraines, tension headaches, and more—and by funding conferences at which these uses were promoted, the manufacturer was able to parlay the drug into a blockbuster, with sales of $2.7 billion in 2003. The following year, in a case covered extensively by Petersen for the Times, Pfizer pleaded guilty to illegal marketing and agreed to pay $430 million to resolve the criminal and civil charges against it. A lot of money, but for Pfizer, it was just the cost of doing business, and well worth it because Neurontin continued to be used like an all-purpose tonic, generating billions of dollars in annual sales.

All the more so because the author of the review is a former editor of the New England Journal of Medicine.

Of course, this isn’t to say that there aren’t hundreds and hundreds of useful meds out there (like the ones I take), just that in our search for new ones science is being horribly skewed by economics…

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