Journal: One week on

It's been a week since my latest go-round with Cymbalta. As of tonight, I'll be down to just 150 mg of Lyrica and up to 40 mg of Cymbalta. So far, so good, I guess. I can definitely tell that I haven't had a serving of Lyrica this morning: thighs are on fire, so I'm slouched way down in my chair to keep my weight on my back and butt and off of my thighs. But over the last seven days, I only wet the bed once, which is within usual limits. We'll see how things go when the dose goes up tonight.

technorati tag: multiple sclerosis

In the news: What health care crisis?

In the news lately, there's been lots of ink spilled about the 7.7% rise in the cost of health coverage over the past year. But the first thing I read after my MRI this morning was a piece in the NYT by David Leonhardt arguing that the increased cost isn't really a problem, because most of the increase is attributable to the deployment of new technologies that have extended and improved life. According to Leonhardt, there may be some waste in the system, but the only way to achieve real savings is to limit care. While he acknowledges that the current trend is unsustainable, Leonhardt argues we should, as a society, acknowledge that better care is worth paying for. Interesting read. Snip:

Somehow, going to the mall to buy clothes has come to be seen as a vaguely patriotic way to keep the economy humming, and taking out a risky mortgage is considered to be an investment in one's future. But medical care? That's just a cost.

It's easy to be against high costs, and it will no doubt be hard to come up with a broad health care solution. But the way to start is by acknowledging that an affluent society should devote an ever-growing share of its resources to the health of its citizens. "We have enough of the basics in life," Mr. Cutler, the economist and author, points out. "What we really want are the time and the quality of life to enjoy them."

Link. And see this post about the future health care economy.

Research: Nabilone for spasticity pain

Some promising results in a test of a synthetic cannabinoid for spasticity-related MS pain:

J Neurol. 2006 Sep 20; [Epub ahead of print]
Low dose treatment with the synthetic cannabinoid Nabilone significantly reduces spasticity-related pain : A double-blind placebo-controlled cross-over trial. Wissel J, Haydn T, Muller J, Brenneis C, Berger T, Poewe W, Schelosky LD.

About 30% of patients with chronic upper motor neuron syndrome (UMNS) suffer from disabling spasticity-related pain not sufficiently correctable by conventional treatment. Delta9-tetrahydrocannabinol (Delta(9)-THC) was reported to add benefit in the treatment of pain in patients with multiple sclerosis (MS). The question arose whether synthetic cannabinoids with lower potential for psychotropic side effects could be effective as well. To evaluate the safety and efficacy of low dose treatment with the synthetic cannabinoid Nabilone (1 mg per day) on spasticity-related pain a placebo-controlled double-blind crossover trial was performed.11 out of 13 included patients completed the study. The 11-Point-Box-Test showed a significant decrease of pain under Nabilone (p < 0.05), while spasticity, motor function and activities of daily living did not change. 5 patients reported side effects: one moderate transient weakness of the lower limbs (Nabilone phase, drop out), three mild drowsiness (two Nabilone, one placebo) and one mild dysphagia (placebo). One patient was excluded from the study due to an acute relapse of multiple sclerosis (Nabilone phase, drop out).Nabilone 1 mg per day proved to be a safe and easily applicable option in the care of patients with chronic UMNS and spasticity-related pain otherwise not controllable.

Link.

In the news: Wal-Mart's $4 generics list

Here's a link to a list of drugs included in Wal-Mart's $4 generics menu. I see only one that I'm currently taking on the list: baclofen. Also on the list are an assortment of tricyclic antidepressants, antibiotics, and generic Prozac. Seems pretty underwhelming.

In the news: Cladribine on FDA's fast track

Snip from CBS news:

Swiss biotech firm Serono SA, which earlier Thursday agreed to sell a majority stake in the company to German drugmaker Merck KGaA for $13.31 billion, said its oral cladribine treatment for multiple sclerosis has received 'fast-track' status from the U.S. Food and Drug Administration. This designation covers patients with relapsing forms of multiple sclerosis.

Serono's oral form of cladribine is currently being evaluated in a multi-center, multi-national Phase III study called CLARITY. It is a two-year, double-blind, placebo-controlled study involving more than 1,200 patients. Patient enrollment is planned to be completed by the end of 2006.

This kind of news used to get me all excited, but not so much anymore. I'm not sure, but I think I'm probably more secondary-progressive than relapsing-remitting. (Is this something I need to know, what form of MS I've got?) It's been years since I had a recognizeable exacerbation. These days, I'm more interested in finding pain relief than in reducing the number of enhancing lesions or whatever clinical measure is used to tout the latest MS drug.

Not that I'm complaining about the way things have turned out for me: I'm about 14 years out from my initial MS symptoms, 13 years past diagnosis, and I'm still mostly upright. On Wednesday, my neurologist told me that at this stage in the game, most MS patients aren't doing quite as well. Neurologically, my grades are pretty good, I guess, except the pain.

Last night, I started Cymbalta again. Third time's the charm? We'll see. The urologist says double up on the Flomax to counteract Cymbalta's retention effect. For the last couple days, I've left the office at 4-ish, because the burning and squirming left me completely unable to get anything done. Here's hoping Cymbalta will improve things, because my work load is steadily ramping up.

Link to CBS story.

Journal: Neurologist visit, and Segseat

Yesterday morning, I woke up, threw on some clothes, and raced over to the clinic. I'd forgotten to set an alarm, and it's been a long time since I managed to get out of the house so quickly (no shower, no shave, no coffee, no stretching, no letting out and feeding dogs, etc.). I made it with a couple minutes to spare, so in the waiting room I opened up an issue of the MS Society's magazine Inside MS. I think there was a time when I got it in the mail, but at the time I was put off by the images of smiling people in wheelchairs. "Soon, you'll be one of us," they seemed to be saying, cheerfully. "We're saving a little red scooter just for you." This time, though, I found myself flipping through the little ads near the back for MS-related products and services: cooling vests, lap pools, lifts, etc. One caught my eye: a seat for use with the Segway.

Back when the Segway was introduced, it seemed to have a lot of potential as a mobility aid. At the time, walking was getting more difficult for me, and I imagined rolling around on a Segway as a way to extend my range. But as it got difficult just to stand in one place for any length of time, the Segway seemed a lot less appealing, and it drifted out of my daydreams. Seeing the ad for the Segseat has it back in again.

The Segseat is a nifty little gizmo that allows you to sit on a little bike-type seat while operating your Segway. It seems pretty well designed: it mounts on the post that the 'handlebars' are attached to, and it slides back and forth so as you change the angle of the Segway, your butt remains in approximately the same position. You can flip it up and out of the way if it's not in use. It's a little hard to describe, but there's a video at the web site. Problem is, it adds another 750 clams to the $5,000 price tag of a Segway, so it's unlikely to appear outside my
daydreams any time soon. But it would really be lovely to go for a 'walk' that takes me more than a few hundred yards from home base. Here's the fantasy: heading out to a state park with wife and dogs on a crisp October day, and wandering into the woods (on a very well-groomed trail) a mile away from the parking lot. That would be dreamy, almost like the good old days.

Not much new at the neuro: let's not try Novantrone yet, let's see if we can find a way to get good pain relief and get a brain MRI just to see if there are any active lesions. Observed by a young intern who sat quietly through the whole visit until neuro mentioned something to do with fMRI, and which point she lit up and starting talking about this research and that research, prompting the neuro to get a little exasperated and cut her off. It was somehow very appealing to see someone have a little geek-gasm about neuroscience. Makes one a little more hopeful about the prospects for a cure someday.

Journal: Tough luck

In the NYT today, an essay about medicine and luck (or chance, or what you will). The gist: medical science may have improved your chances of a positive outcome, but there's still plenty of room for failure, and the occasional lucky break. Snip:

Luck seems to have become particularly anathema in an era of evidence-based medicine, in which physicians and patients are encouraged to learn the latest relevant data to guide decisions. Dr. Peter A. Ubel, a University of Michigan internist and author of "You're Stronger Than You Think," believes that his patients prefer biological explanations of why they are sick, rather than hearing that they have bad genes or bad luck. But given the biological variability within given diseases, like cancer, and the fact that variable genetic makeup leads different individuals to respond differently to diseases and therapies, even better scientific knowledge will not eliminate the role played by luck. Chance, the British physician R. J. Epstein wrote in the Quarterly Journal of Medicine, ensures different outcomes within given sick populations.

I would guess that MS patients, as a group, probably understand this idea better than others. It starts with that consult with the neurologist where he show you some blurry little patches on the MRI, and tells you that you might have MS, or you might be fine, but it's impossible to say at that point. It continues with every new tingle, tremor, tic, every new symptom or disability. And every new drug you get: studies indicate that subjects who took the drug were 30% less likely to have new exacerbations/were 25% more likely to remember where they put the car keys/were 12% less likely to punch the bus driver/were 66% groovier/were 72% more likely to fit into their jeans/were 17% less likely to miss a mortgage payment/were 59% less likely to chew off their own feet.

Then there's the subset of those of us with pain. We are exquisitely conscious of our rising and (mostly) falling fortunes. We fill shoeboxes with drugs that didn't work, or stopped working, or that we tried because our insurance companies wouldn't pay for the drug the doctor prescribed until we tried the half-dozen cheaper alternatives. Anyone need Neurontin? I have buckets of the stuff, plus a bunch of pills with names that end in -amine, and some Lyrica that will probably be left over when I switch back to one of the losers to give it another try.

Nobody needs to explain to us that medicine is partly science and partly art. We are the canvas upon which medicine doodles: Drug not working for you? Try playing around with the dose. If that doesn't work, we'll try something else, something we're studying, something off-label, and feel free to play around with that, too. If that doesn't work, put all your meds into a blender with some yogurt, some orange juice, a banana, and some honey, and make a smoothie. Feel free to play around with that.

When it still hurts, the artsy side of medicine -- the side that we haven't had good luck with -- looks to us like Jackson Pollack, or de Kooning. Art? we scoff to ourselves. Shit, a four-year-old could have come up with that.
Link.

Shoutout: Hail, BrainTalk 2

Learned yesterday that there's a site serving as a sort of interim BrainTalk forum (thanks, Anonymous!). I can't quite figure out what the deal is with BT 1, but BT 2 is up and running. You'll need to register as a new user, and it's unclear what will happen with either BT in the future. Pass it on.

Journal: Ironman?

As I walked in, using a cane, the lifeguard recognized me. I hadn't taken the cane to the pool before, but figured it might reduce the chance of me losing my balance and spilling the contents of my skull onto the pool deck.

She mugged a look of concern and said, "Are you okay? Did you do the Iron Man [triathlon held in town over the weekend]?"

technorati tag: multiple sclerosis

Research: Another angle on neutralizing antibodies

So we all know that lots of us who take interferon-beta have developed antibodies to the stuff, which might be reducing the effectiveness of the stuff. If I understand this abstract correctly, the antibodies might also be messing with the interferon-beta your body is producing on its own. Is that a problem?

Arch Neurol. 2006 Sep;63(9):1296-9.
Potential for interferon Beta-induced serum antibodies in multiple sclerosis to inhibit endogenous interferon-regulated chemokine/cytokine responses within the central nervous system.
Shapiro AM, Jack CS, Lapierre Y, Arbour N, Bar-Or A, Antel JP.

BACKGROUND: A proportion of patients with multiple sclerosis (MS) receiving systemic interferon beta therapy will develop serum neutralizing antibodies (NAbs) that can reduce the activity of the drug. Interferon-beta (IFN-beta) is produced by glial cells within the central nervous system. Although systemic interferon beta does not access the central nervous system, titers of serum NAbs may be sufficient that some will access the central nervous system. OBJECTIVE: To address whether serum samples that contain high titers of NAbs could inhibit glial cell production of chemokines and cytokines that are regulated by endogenous IFN-beta. DESIGN: We used an in vitro assay involving toll-like receptor 3 ligand (polyinosinic-polycytidylic acid) signaling to assess the effect of serum samples containing high titers of NAbs (1800-20 000 U) on production of the chemokine CXCL10 and the cytokine interleukin 6 by human astrocytes. RESULTS: Serum samples positive for NAbs significantly inhibited polyinosinic-polycytidylic acid-induced CXCL10 and IL-6 production by astrocytes. CONCLUSION: High-titer NAbs to interferon beta may block endogenous IFN-beta function and alter the chemokine/cytokine microenvironment within the central nervous system, thereby modulating the profile and course of the local inflammatory response.

Link.

Research: Buried alive in your own skull

Today at Slate.com, William Saletan has a piece about an account of a young woman in England who appeared to be in a persistent vegetative state following a car crash. Snip of what happened next:

Then, scientists put her in a Functional Magnetic Resonance Imaging scanner, which tracks blood flow to different parts of the brain. They asked her to imagine playing tennis and walking through her home. The scan lit up with telltale patterns of language, movement, and navigation indistinguishable from the brains of healthy people. Something was awake inside that woman's skull. Without the scanner, no one but her would have known.
....
Now scientists are debating what goes on in the English patient's head. Some call her performance a "decision"; others dismiss it as a mere "response." They ask why her body doesn't move, since her motor pathways appear to be preserved. The analysis in Science concludes that she has a "rich mental life" but may not be "conscious." What in God's name does that mean? Would you pull the plug on a 24-year-old relative with a rich and responsive but unconscious mental life? Go ahead, raise your hand. Or just think about raising it, and we'll record your vote by brain scan.

Saletan gives the obligatory comparison to Terry Schiavo (starved of oxygen for years, her brain had "liquefied") and raises the issue that "the reality of your mental life" may depend on which tests you or your insurer can pay for, which hospital you're taken to.

This kind of stuff scares the shit out of me, though I know it's unlikely that MS could put me in a similar situation. But in darker moments, when I've been out in the sun too long and lost my ability to walk and peed my pants and been reduced to a lurching, mumbling pile of meat and bones, I feel utterly disconnected from the corporeal existence that I used to know. Increasingly, I find myself drifting in and out of this disconnected state; the discombobulated state sometimes feels more ordinary than the flares of physical and mental vitality.
Link.

Journal: Bits

Off to the east coast for a conference this week, so just bits and pieces:

1. Boat-related discombobulation last weekend...still too hot, I guess...both my wife and sister-in-law in attendance...afterward, wife asked if she should try backing up the trailer...actually thought for a couple second before saying "Nope."

2. Wife found a giant puffball mushroom the size of a Hyundai growing in the neighbor's yard...you'd think they'd be a lot tastier than that.

3. DHEA supplements consigned to shoebox full of other non-miraculous cures.

4. Hockey tape looks really cool on the handle of my cane.

5. Finally bought small electric snowblower, guarranteeing dramatic accelleration in global warming.

6. Pain hurts.
technorati tag: multiple sclerosis