On Tuesday morning, I called my doctor for a refill. “Sure, we’ll send that in.” A few hours later, I called the pharmacy. “Your doctor just called it in; it will be ready in twenty minutes.”

I gave them forty minutes, then drove to the pharmacy. It was around 2pm. I had a five hour drive ahead of me, and really wanted to get out of town before 3pm so I wouldn’t still be on the road when it started getting dark.

But wouldn’t you know: “Your doctor never called us.” You just told me they called it in. “Nobody here ever spoke to you.” I hit redial on my phone – and the phone at the desk started ringing. “Well, we still don’t have the ‘scrip from your doctor.”

So I called the doctor. In fact, they had not called in the prescription. Fuck me. The pharmacist glowered at me like I was a crazy person, which I sort of was, but I certainly didn’t imagine that goddamned phone call – and why had they never gotten in touch with my doctor in the three days since I called in the refill? Jerks.

I drove to my doctor’s clinic and marched past the reception desk. The tech in the back asked me what I wanted, and I explained that I needed my prescription, and would not trust the usual channels. She told me to wait outside the exam area while the doctor finished with her patient, but I was 60% sure the tech was going to call the cops.

I positioned myself next to the fire alarm pull, just in case the cops did show up and tried to drag me off. Obviously, I wasn’t in a particularly good frame of mind. As I waited, I watched the clock tick off five, ten, then fifteen minutes. In all the time I’d been going to that doctor, I’d never had an appointment last longer than 15 minutes. I decided to give her another ten minutes, and then I was going to raise hell – maybe pull the fire alarm just for the hell of it.

If this was my cholestyramine, I probably wouldn’t have been upset. But it wasn’t – I was trying to get my anti-depressant refilled. And since it’s pretty well known that going cold turkey off these drugs has nasty consequences, I just don’t see why getting that scrip filled was not an urgent issue for all concerned. It occurred to me that I could just start shooting people (not that I had a gun) and plead temporary insanity; I had an airtight case.

But at last, five minutes before my deadline, the doctor appeared. She was very sweet and patient and understanding, even though my homicidal fantasies were probably immediately visible to trained eyes. “We’ll call that in”. Actually, I’d rather leave with paper in my hand. “We can do that.”

I got the scrip filled in the downstairs pharmacy, and headed out: 3:30pm, just barely not so late that I missed yet another day of vacation. Even without taking any pills, I was very much relieved and pacified for having them with me.

Incidentally, I’m never going back to that pharmacy again. It was a CVS: I’ve heard horror stories from friends about the chain, but never had any problems myself. Until now. It’s not just the sheer incompetence of that particular pharmacy, but the bullshit attitude of the pharmacist that I found so off-putting. One of the things that I just hate about my illness is that it so often puts me at the mercy of such cretins. One day, those five minutes will run out – and then I’ll be free.

But I’ve also had sleep disturbances, sexual side effects, and an excessive appetite the entire time. And lately I wonder whether I would be better off without paroxetine; after all, I can’t take it forever. So I talked to my doctor, and he agreed that I could start to wean off the drug. He told me to watch out for “SSRI discontinuation syndrom”, and I’m quoting his email here:

which is common and can cause mild dizziness, fatigue , headache, nausea, and diarrhea. Uncommonly, it can cause various tingling and nerve distrubances

I’ve been taking half my dose since Wednesday, and I yesterday I woke up a little dizzy. I thought, well, “it should only be mild, and it’s not unexpected”. I decided mild dizziness was not a problem as I went about my day, which included some driving – in fact, a two-hour round trip to get to a meeting I had promised to attend.

As near as I can tell, serotonin does two things: mostly, it works in the gut to help regulate intestinal movement – hence the abnormal appetite. Secondly, it works in the brain to help regulate social interactions. And the way SSRIs work is to keep the serotonin in your system by preventing it from being soaked up by your brain. If your brain is inhibited from re-uptaking the serotonin, then it stays better attuned in various stressful situations.

The thing about driving is that even when you’re in a car by yourself, it’s a surprisingly social activity. You have to interact with the drivers around you, and obey all sorts of rules and conventions, and all the while without any easy way to communicate directly. And what my doctor apparently did not tell me is that a lack of serotonin can make you deeply anti-social.

So after a half-hour of driving – in heavy traffic – my brain had sucked up all the serotonin my body was going to produce. I was a mess, and a wreck waiting to happen, and not even halfway to my destination. The lack of serotonin made me defensive and paranoid and irritable. I screamed at one driver for cutting into my two-car-lengths’ safety zone, while I was trying to focus intently on the car ahead of me and thinking, “To hell with the mirrors, Watson*, they’re nothing but bad news!” I seriously considered stepping out of my car at a red light and beating the crap out of the driver’s new Ford with a tire iron. I knew it was a “bad idea”, but I also knew it would make me feel a lot better. I talked myself out of it while the light changed.

At that point I was already headed home. I realized there was just no way I was going to make it to the meeting and back again without killing somebody. I made it home safely, took the rest of my dosage, and tried to chill out.

Despite this being a minor debacle, I did some things right. First, I made a point of talking to my doctor about what could go wrong, and what to expect, and how to react. Second, I kept double-checking myself to make sure I was behaving normally – a habit I learned while taking prednisone, the gift that never stops giving you nightmares. Had I not been so well-informed, and so attentive to my brain, yesterday might have gone a lot worse.

None of this is going to keep me from going off paroxetine, and it wouldn’t keep me from taking it again at some point. But, like a lot of things, it’s just going to be a little tougher than I expected. In the meantime, I think I’ll probably ask someone to hide that tire iron from me.

(*Coach Watson taught drivers ed and tennis at my high school. He insisted that we check our mirrors every ten seconds while driving, and eight to twelve times before even turning on our blinkers. He wasn’t a very good tennis coach, either, if memory serves.)

I would be more comfortable — and supportive — if marijuana were the basis of numerous drugs currently used as medicine. Or if it had a long history of medical use, and its effects and applications were well-known to medical science. Or if it were widely available and already legally grown in this country, by farms and garderers alike.

None of this is true of marijuana – but is true of another plant: Papaver somniferum, also known as the Breadseed or Opium Poppy.

For whatever reason, marijuana legalization is a very popular topic on Change.org, at least among the membership. This means that a number of the site’s causes and petitions focus on some aspect of marijuana legalization or medicalization. With that in in mind, I wrote this post partly just to yank some chains, so there’s that. But I actually do find it intensely frustrating that the government has these absurd rules on this particular plant. It would be immensely gratifying if one consequence of the broader legalization movement would be that I could grow and use the poppy without fear of a felony conviction.

….I discovered that I had to go straight to college: my parents’ insurance would no longer cover me if I took a year off between. So I went to college with no real ambition or focus, and frittered away two years taking classes like Honors Drama, Beginning Drawing and Scuba Diving — mostly at taxpayer expense, because I won a generous scholarship to the state university — before I finally got my act together and transferred to a more reputable school.

It’s not too much to say the more reputable school saved my life. In addition to being aimless,  I was also pretty depressed about my life prospects whilst at the state university. The fact that I spent my first year of college tweaking on predisone helped not at all.

Did you have a good Thanksgiving?

I had a good Thanksgiving. In fact, I had a really good Thanksgiving – maybe my best ever. Saturday afternoon, we were walking around town, doing a little shopping, and I felt so happy. I was giddy – like I was high.

It might have been the weather, and it might have been the family. It might have been the delicious meal prepared by my lovely and talented Executive Nutritionist. It might have been the hiking and the music and getting a good night’s sleep and the happy little puppies wagging their tails at me.

But I have to admit: it might have been the drugs. Specifically, paroxetine: I now take triple the dose I did when I started last summer. I originally took it because I was having trouble concentrating – a sign of depression, though I didn’t feel particularly sad. The drug has helped some with my concentration, but I’ve also noticed that I’m happier, less easily ticked off, and I have more energy. The drug has to play some role in all of this.

So back to Thanksgiving: I might dismiss my happiness as a medicinal mirage. Maybe I really had a crappy Thanksgiving, after all. This is why I resisted taking brain meds for so long: I worried it would make me fake happy, and not really happy.

My past experiences with meds played into this concern. Prednisone, among its many side effects, made me fall in love – hard – with just about any girl I happened to know. Over the course of one prednisone-infused year of college, I fell in love with a dozen girls, one after the other. None of them were the least bit in love with me, of course, and some of them were plainly wrong for me. And that experience – because it felt so real, but was so obviously a product of the chemical – made me deeply skeptical of being in love. If prednisone can do that, how can being in love mean anything?

And, in all candor, almost a decade of anti-drug instruction in school didn’t help. We children were told again and again: what you get from a pill or a needle can never be real – so get high on life! No wonder I balked at pills to make me happy: my internal Nancy Reagan was always there to tell me it was wrong. My anti-drug, it turns out, is depression.

What I have come to accept is that my emotions are no less real or valid for having a clear mechanism. If I have reasons to be happy, my happiness is not fake – even if it comes from a pill. This weekend, everybody around me – medicated or not – agreed that we had a wonderful Thanksgiving; whether or not paroxetine was making me happy, I was happy for good reason.

Same for falling in love: I have every reason to be in love with my wife – and I am, very much, but I don’t have to worry whether it’s paroxetine making me feel this way. The problem with prednisone was that I didn’t have good reason to fall in love with those women – not that falling in love is only legitimate when inexplicable.

And I think that accepting the validity of the explicable is a big step for me. Whether my feelings come from the disease, the pharmacy, or God, I have to deal with them and act on them just the same. The question, “where do my feelings come from?” isn’t nearly as important as, “what am I going to do with them?”

So yes, I really did have a great Thanksgiving. Drugs or not, I hope yours was just as good.

(Photo by Flickr user mortimer by CC License)

Saturday morning I dragged myself out of bed a bit earlier than usual, so I could walk to the community center where the country was running its H1N1 vaccination clinic. I got there 30 minutes before the clinic started, and there were already 500 people in line. I stood in the rain and cold for a few minutes, and decided the pork pox can just have me. I can deal with a fever; I can’t deal with cold and wet. Most of the people in line were little kids, too, so they probably need it more than I do anyway.

Today, I at least got a seasonal flu shot, even though seasonal flu is probably what I had a few weeks ago. The process was relatively smooth, though the forms did have these questions (among others):

Have you been sick in the last two weeks? [] yes [] no

Are you taking any medications? [] yes [] no  Please list:_____

The correct answer to the first question is, of course, “[x] yes” – in fact, I’ve been more or less sick my entire adult life. But I marked “no”, because I know from experience that they don’t care about Crohn’s disease, and I didn’t want to have to explain my answer.

As for the meds, there was literally an inch of blank space fit the names of all my meds. I decided to list only the three big ones, one of which is OTC and probably could have been left off. But a few years ago this would have been a serious problem; given the dozen or so meds I was on, I probably would have needed an extra sheet of paper. Actually, I probably would have brought a print-out with me.

When it was my turn to ride the needle, I handed my form to the nurse. She asked me the same questions again, except for the meds question. This may be back-seat driving, but it seems to me that if somebody hands you a form that names three medicines, you might conclude that said person is in fact sick. But when she asked me the “sick” question, I said “no”, and she bought it. She probably recognized the meds and decided they weren’t relevant to her mandate.

I realize the question really means, “have you had flu-like symptoms in the last two weeks?” Still, it’s not at all clear why they can’t ask that directly, instead of being so vague. Nor is it clear why the form’s author was unable of pressing the underscore key more than five times – or even just holding it down for a while. Like this: __________________________________________

It’s that easy, folks.

(Photo from Flickr user nchoz by CC license)

The thing about being sick is that even though it forces you to take time off to care for yourself, the stuff that you’re not doing doesn’t magically disappear. It’s still there waiting for you when you’re better. When I had a job that offered sick days, I took ‘em – and I knew that some of my coworkers thought I was goofing off or faking. But I still had all my work to do when I came back to work. Just less time to do it.

The same with this bout of the flu. Lots of stuff got put aside for a while, and so I’ve been playing catch up the last week or so. And now I finally have a few minutes to spare for bloggering.

By the way, Grand Rounds is up at Non-Clinical Jobs. Thanks to Dr. Kim for hosting, and including my late-submitted post.

On to more important matters: Dr. Rob posted yesterday about “Not Like Magic“, arguing that the allure of so-called alternative medicine is that patients want “magic”. I’ve met Dr. Rob, I have a lot of respect for his blogging, but I have to say that this post is what the Internets call a “FAIL”.

Two physicians try to figure out why patients spend money on woo, and the best they can come up with is “people want their problems to magically go away”? If this is the full extent to which Dr. Rob and co. understand their patients’ behavior, we’re in trouble: after all, Dr. Rob is one of the good guys.

Some days I feel like I’ve accomplished enough with this blog that I can move on; yesterday, I realized I have to  spend the rest of my life writing it. The rest of this is long, so click on the break for more….

So, why do patients spend money on alternative medicine? Well, I don’t – not much anyway. I think most alternative medicine is crap, so I stick to the hard stuff. But nonetheless, I can think of at least four six reasons why patients might turn to alternative medicine,  and none of them are particularly magical:

• The first and most obvious reason is that physicians aren’t usually very good at persuasion. Physicians tend to present their recommendations in a ‘take it or leave it’ fashion – without any real sophistication. They tend to rely on the fact that they are selling scientifically-proven medicine to be persuasive enough – more or less assuming their patients ought to do the rational thing. The people who sell alternative medicine, on the other hand, are typically quite good at persuasion. They have to be, of course, because they don’t have science on their side. There’s a reason snake-oil salesman have the reputation they do; it’s the same reason  legitimate drug companies spend a lot of money trying to persuade patients to buy name-brand drugs for diseases they don’t have.
• On a related note, patients want to know how things work, and physicians sometimes don’t explain things well. Often, this is because an explanation would be too technical. After all, you would have to get into the nitty-gritty of cellular biology to explain why antibiotics kill bacterial cells but not human cells. But just saying, “this drug kills bacteria” isn’t an explanation for how it works – it’s just a way of saying it works. And sometimes, this is because the physicians just don’t know. For example, I used to take a drug called mesalamine. I asked my gastroenterologist how it worked. “It reduces inflammation in the gut”. How exactly does it do that? I asked. “We don’t know the precise mechanism”. Now I understand that just because we don’t understand the mechanism doesn’t mean it’s not scientifically valid, but to a lot of people my gastro might as well have been admitting it worked by magic. And lots of people would also have trouble differentiating that explanation against some of the alternative medicines and supplements that claim to do the same thing. Those products always have very compelling, scientific-sounding explanations for how they work, even especially if they don’t work at all.
• Patients decreasingly trust our health care system. It seems like every week there’s another story about a medicine that was approved by the government, but later pulled because it killed people. Moreover, there is widespread popular perception that pharmaceutical companies are entirely devoted to profiting from people’s suffering, and are protected and encouraged to do so by the federal government. The fact that alternative medicine is a not regulated by the government is, to many people, a very good thing. Alternatives compete in a much freer market than prescription drugs, and the companies that sell alternative medicine know they aren’t tainted by the appearance of oligopolistic collusion to exploit human misery. They spend a lot of money positioning themselves as caring, compassionate alternatives to pharma. Granted, they exploit people’s cynicism and suspicion, but that doesn’t mean pharma’s reputation is undeserved.
• Pharmacies often don’t differentiate alternative medicines from ‘real’ OTC medicines. In virtually every pharmacy I’ve ever been to, you could find products like Zicam right next to the Sudafed, Claritin, and other real medicines. This legitimates a lot of products that aren’t at all legitimate. I know and you know that drugstores will sell us anything we want to buy, but the fact that there is a trained pharmacist on the premises, who in theory has some professional obligation to science and humanity, makes it seem like there is also some sort of check on what OTC products are available.
• Patients want to feel in control. Alternative medicine can help them feel in control, even if it doesn’t actually help them with their problem. If I feel sick, I have to call my doctor’s office, get an appointment, wait forever to see him, see a nurse first, get my five minutes with the doctor, get a prescription, go to a pharmacy, wait a little more for the pharmacist, and finally go home and take my medicine. Even if I know exactly the prescription I need – mycelex, for example – I still have to go through all of this. And even if I have to take the same drug every day for the rest of my life, my insurance company still requires that I see my doctor every six months to renew the prescription. All this rigmarole might be necessary to real medicine, but a lot of patients end up feeling like a cork in the ocean – without any explanation of why it’s all necessary. If we can skip all that and just buy whatever claims to cure our symptoms OTC, we might feel a lot more in control, even if the product doesn’t really do anything.
• Finally, alternative medicines sometimes – gasp! – work. For the longest time, I couldn’t eat salad or any raw vegetables without getting horrendous gas and diarrhea. My doctors couldn’t explain it, and couldn’t offer me any help, so I tried ‘alternative’ supplements (which, of course, were shelved right next to the Immodium and Pepto Bismol). After few false starts, I found that Bean-O solved my problem: I had much less gas and no diarrhea after eating vegetables. So long as I took Bean-O, I could eat salads again, and raw apples, and green beans – all foods I had avoided for years. Maybe it’s just a placebo effect, or a spurious correlation, and lately I’ve been doing without as much Bean-O – but as best I can tell, it really helped me for a long time. It worked, and it was worth the money.

That’s six reasons, just off the top of my head. I am sure there are more, and none of them to do with magic. I know it’s easier to deal with other people’s odd decisions if we can dismiss them as irrational, but that isn’t actually a real excuse from the obligation to empathize with our fellow human beings. We at least have to try.

What’s especially troublesome in this case is these physicians’ utter failure to appreciate their patients. Instead of sitting around bullshitting each other, couldn’t they have asked this question of some of the people they’re supposed to be helping? No – instead they came up with pat explanation that has the twin benefits of making themselves feel better about their chosen profession, whilst denigrating those who aren’t quite reverent enough.

As I’ve said, I like Dr. Rob, I usually like his blogging, but in this case I hope he will consider his wrists well and truly slapped. Maybe next time he wants to know why patients do things, he will – just maybe – think to ask.

But there’s a dilemma: policymakers want to foster cost-saving competition without killing the financial incentives that have put the U.S. biotechnology industry at the vanguard of medical science and without stifling the development of even more drugs that could save lives and eliminate suffering. Finding that equilibrium goes to the question of how long biotech firms should be guaranteed exclusivity, outside the protection of their patents, before copycats can begin using the data they have developed.

This is a somewhat misleading way of framing the dynamic. On the one hand, yes – patents guarantee profits, which spurs companies to innovate. But their innovations are not necessarily a net benefit to social welfare. Take the example of Remicade, J&J’s blockbuster biologic for Crohn’s, RA, psoriasis, etc. It made billions of dollars for the company, and led other companies to innovate new drugs, eg. Humira, Enbrel, Cimzia. Even though the new drugs are technically new, they all use the same basic mechanism; they’re all anti-TNF-α antibodies, which means they all work about the same and have about the same risks.

Biomedicine is so complex that each company can create a drug just different enough from the others to be awarded a patent, which protects them from generics and guarantees their ability to demand high prices. Then they market the drug to patients and doctors as if it’s the latest and the greatest. So the drugs all have patents, they are all expensive, and they all do pretty much the same thing: how is this situation better for consumers than were generics made legal? It’s not, as far as I can tell.

Moreover, the same companies ignored or abandoned promising research in other biologic and non-biologic therapies, and focused on the guaranteed profits from anti-TNF-α. If you can’t get TSO or J695 or LDN for your Crohn’s, it’s because there’s sure money in anti-TNF-α. Other drugs are slightly more risky from a financial perspective, even if they might ultimately be better for patients. There’s every reason to think that if we guarantee profits in biologics, that’s what we’re going to get. There’s no reason to think we’ve exhausted the possibilities of conventional therapies for most diseases, and biologics bring a whole new profile of side effects and risks that we are still learning about.

Second, there’s this bit:

That means it can be hard to find a truly independent viewpoint, though it often requires deep digging into the finances of advocacy groups to discover their ties. In July, one calling itself the National Health Council wrote letters to members of Congress “on behalf of 133 million Americans” asking for a minimum of 10 years of data exclusivity. The group boasts a membership that includes 50 of the nation’s largest patient-advocacy groups, including the American Cancer Society, Easter Seals and the National Kidney Foundation. But its board of directors reads like a Who’s Who of top pharmaceutical executives from Amgen, Pfizer, Novartis and Bristol Myers Squibb. Its 2007 tax filings show that almost half its $2.3 million budget came from PhRMA and drug companies.

This also means that when the ACS, Easter Seals, and Kidney Foundation talk about health reform – if ever – they do it with influence from the pharmaceutical industry. (Along the same lines, you might re-read this post about the National Patient Advocacy Foundation.) Which is to say, we can’t really trust advocacy organizations to speak solely for our interests of patients. Virtually all of them get money from pharmaceutical companies, and for many that is the largest source of funding. Many of them include pharmaceutical executives on their boards or advisory councils.

It is entirely likely that you will more for your medicine – a lot more – because your organizations were unable to stand up to Pharma. This is why it’s so important that patients speak up, make themselves heard, and don’t wait for their disease’s organizations to do it for them. They won’t. They can’t.

Where was I? Right: I went to my primary care physician last week, and we talked about a few things that are bugging me. One of my problems lately is a lack of focus; this has been on-going for a while, and is a symptom I strongly associate with prednisone usage. In fact, prednisone caused a lot of  problems for me.

When I was first prescribed pred, nobody told me it would screw up my brain. Of course, I read the page of warnings that came with the pills, but I still had no idea what to watch for. The effect was so gradual and insidious that I never recognized it as it happened. I never made the connection between “you may experience mood changes” and the fact that I turned into a moody, grumpy monster that destroyed everything I came across. Dunc – SMASH! The juicers at the local hetero gym call it ‘roid rage’, I believe. Also, I wanted planned to kill myself, which was nowhere in the list of side effects. I finally put it all together when a friend of the family told me, “prednisone can make you crazy”. Jane Pauley even wrote an illness memoir about how prednisone ruined her life (spoiler alert: she then learned to appreciate life more).

Somehow this experience (mine, not Jane Pauley’s) became a deep aversion to any medicine with psycho-active properties. Not only do I have the normal social stigma associated with anti-depressants, but I also have a powerful internal compulsion to avoid anything that affects my brain. It took me more than ten years before I was comfortable just smoking pot, and then only once. After my surgery a few years ago, I did the long slow wean off the ‘roids. I was hoping that at some point the lack of focus would resolve – along with the moodiness and insomnia. After a couple years of waiting,  no dice.

My physician and I talked about a number of options; he even suggested gingko, though he cautioned that it probably doesn’t work. We also talked about various ADHD drugs, but he worried those would upset my already fragile digestive system. Finally, he suggested Paxil. And, frankly, he wasn’t the first to do so. And somehow, my aversion collapsed. I let him write for Paxil – and, more significantly, I started taking it last week. The picture is from my pill bottle; you’ll notice that the label is attached to the cap. That’s because they ran out of room on the bottle for all the warning labels – do not drink alcohol, may cause sleepiness, et cetera.

And, of course, things are worse. I haven’t slept a whole night since I started Paxil. My lack of focus is much worse; it’s taken me three days to write this post. I have gotten very little substantive work done in the meantime. So I did what the label said: I contacted my doctor. I’m still waiting to hear back from him. But, oddly enough, I do feel a little better. And tonight I’ll take half a Benadryl and go to bed early – that should knock me out solid. And hopefully, I’ll feel better in the morning.

I doubt this post will make any more sense in the morning than it does now. I intended to write about the stigma of anti-depressants in the illness community; a lot of us have been told, “it’s all in your head”, at some point or another, which makes us leery of any drugs that treat only our head. This is an aversion I think can be entirely valid, but I have lately begun to worry I might be depriving myself of a therapeutic regimen that could improve my quality of life. Of course, I am not presently a ringing endorsement for anti-depressants, so maybe I should go back to being leery. We shall see.