Tuesday, September 27, 2005

Study: Sativex effective in reducing neuropathic central pain (which is what's kicking my ass)

I found a press release pointing to the forthcoming publication in the journal Neurology of a UK study of Sativex involving 66 patients. The manufacturer obviously thinks it's good news, but I'm interested in what the science-types have to say:
This randomised, controlled trial demonstrates that Sativex® was significantly superior to placebo in reducing the mean intensity of pain (p=0.005) and sleep disturbance (p=0.003) amongst people with MS. The study was conducted in 66 patients, 65% of whom required support to walk or were wheelchair bound and were suffering from moderate to severe central neuropathic pain which had not been alleviated by currently available medications. Patients continued to take their existing medication throughout the trial. Sativex® was administered as an oromucosal spray allowing flexible dosing which is ideally suited to the variable nature of MS. Sativex® was generally well tolerated in the study, although more patients on Sativex® than placebo reported dizziness, dry mouth and somnolence. Cognitive side effects were limited to long-term memory storage.

Here's the cite:
D.J.Rog, T.J.Nurmikko, T.Friede, and C.A Young. Randomized, controlled trial of cannabis-based medicine in central pain in multiple sclerosis. Neurology 2005;65:812

I wonder if they had problems with "unmasking" in this one...
Link to press release.

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When can your doctor fire you?

I suppose it's more accurate to say that a doctor is quitting your employ, rather than firing you, but it's an interesting topic. A piece in today's NYT raises the issue from the professional ethics standpoint. According to AMA guidelines,
a doctor may withdraw from a case only if the doctor notifies a patient, the patient's relatives or responsible friends with enough advance notice for the patient to secure another physician. A physician, under the guidelines, can decline to treat a patient who requests a treatment that is known to be scientifically invalid or that is incompatible with the physician's personal, religious or moral beliefs.

Ethics, though, aren't the whole story. The law has something to say on the issue as well. In particular, states are considering laws that allow doctors, pharmacists, and other health professionals to refuse to perform certain procedures, dispense certain drugs, or otherwise participate in activities to which they have a moral or religious objection. The AMA's guidelines recognize that physicians may have religious objections to certain treatments, but AMA guidelines don't dictate the legal consequences of acting on such an objection. In Wisconsin, the state Senate is considering a bill that provides exemptions from civil liability, professional discipline, and adverse employment consequences to health care professionals and health care facilities that refuse to participate in abortions, sterilizations, and a half-dozen other activities. Link to a story about the bill in the UW-Madison Daily Cardinal.

Monday, September 26, 2005

Journal: Next, please.

So long, Cymbalta, and don't let the door hit you in the butt on the way out. Hello, Zonegran.

A few months back, I saw a neurologist at the pain clinic. My regular neurologist had suggested the pain clinic might have more success in dealing with the burning pain in my legs. After a really good visit with the pain clinic neuro, I started on Cymbalta, which is an antidepressant that works on both serotonin and norepinephrine. Almost immediately, I started having increased bladder trouble: harder to go during the daytime, then either having to pee or having to change the bed pad like half a dozen times every nite. (This is kind of odd because Cymbalta is sometimes used off-label to treat stress urinary incontinence.) After a while I noticed an improvement in the pain and in my mood, but I started to feel pretty sleep deprived.

Eventually, it became clear that on balance Cymbalta was not helping me. I called the pain clinic to let them know that I wanted to stop. The message I got back on a Friday was OK, fine, but you should probably taper off rather than quit cold turkey, to avoid withdrawal. Tapering required picking up some low-strength pills at the pharmacy, but I didn't bother to pick them up until Monday, by which time I'd realized that, yes, one should not quit Cymbalta cold turkey. Suffice it to say that Cymbalta withdrawal makes one a real asshole. Taking the low-strength pill on Monday morning restored me to my usual self.

Now, I'm starting an anti-seizure drug called Zonegran. This is on top of the 3000 daily mgs of Neurontin that I'm already taking. Zonegran's got side effects similar to those of Neurontin (makes me a bit sleeeeeepy, slightly stooooopid), so we'll see what happens. I'm tapering up to a full dose of 200 mg by ramping up 25 mg per week, meaning I won't be at full dose for a couple months. Wish I didn't have to wait that long. And I remain concerned that effective pain treatment will leave me too dopey to keep doing my geeky, thought-intensive job.

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Thursday, September 22, 2005

Jet Fakes Emergency for Gambia Soccer Game - Yahoo! News

Pilots of a chartered jet carrying 289 Gambian soccer fans faked the need for an emergency landing in Peru so passengers could watch their nation's team play a key match, officials said Wednesday. The plane, claiming to be low on fuel, landed Tuesday in Peru's northern coast city of Piura, where Gambia played Qatar in the FIFA Under-17 World Championships later that night. Emergency crews were scrambled ahead of the Lockhead L1011 Tri-Star's unscheduled landing. It was to have landed in the capital, Lima.

How important is soccer? Really important, especially if you're not an American. Incidentally, I spent the first half of my junior year in high school as an exchange student in the city where the plane made its "emergency landing," Piura. I'd love to go back some day, but I think it might just be too damn hot there.

Link to AP story at Yahoo news.

Wednesday, September 21, 2005

Journal: What if my sclerosis was amyotrophic lateral instead of multiple, or What happened to my letter to Darcy Wakefield?

The other day on NPR, I heard a commentary written by a woman named Darcy Wakefield. A couple years ago, when she was 33 (about my age), she developed ALS (a.k.a. Lou Gehrig's disease). At the time, Darcy Wakefield was an English professor, an avid runner, and, it seems, just an all-around dynamic person. The piece on NPR was about loss: how she's lost the ability to turn herself over in bed and how terrifying this is, how it feels to confront the accumulating losses (oxymoron?) the disease has dealt her, how she longs for an escape from those losses. The piece was read by her sister, suggesting she's also losing or has lost her ability to speak.

After I heard the piece, I starting thinking about what Darcy and I have in common, and what's different about us. For me, MS has also been a story about loss: slowly losing some physical abilities, and then, as a consequence, losing activities and experiences, losing relationships, losing confidence and other bits of my identity. But while ALS deals out many of the same neurological damage that MS does, it's a very different animal. ALS viciously attacks only the motor neurons, leaving the patient paralyzed, but leaves the patient's mind intact. Eventually, patients can't breathe on their own. The average life expectancy of an ALS patient is two to five years. (Get the basics from the ALS Association here).

In her commentary, Darcy remarks on how 'slowly' her losses have unfolded, how they were almost unnoticable while they developed. But to me, a two-year progression like Darcy's seems unmercifully quick-- whatever disabilities I've got have taken 13 years to accumulate.

After hearing her story, I wanted to write to Darcy, to tell her about my experience, to ask her to tell me more about her life. God help me, I started writing and got a couple paragraphs down before I realized what a stupid idea it was. Here's why its a stupid idea.

For one thing, Darcy's published a collection of essays about her experiences so for called I Remember Running: The Year I Got Everything I Ever Wanted-and ALS. No need to bug her. But the other reason is more complicated.

I have a tendency to see people living through awful things as a potential source of insights that are unavailable elsewhere. I suspect I'm not unique here. I first became painfully aware of this tendency in myself a couple years ago when a good friend was diagnosed with really aggressive lymphoma. It had spread around her heart, or something like that. It was really grim. She decided to go back to her home town for her treatment. After chemo failed, she decided to undergo two consecutive autologous stem cell transplants. Shortly before the transplants were to start, she and her affable boyfriend paid a surprise visit for a weekend.

She was really skinny, with a couple inches of hair starting to grow back. She looked tough, and, I thought, wise. She's a scientist, and she tended to talk about her illness in what seemed like a detached way; cell counts and timetables and structure and process. We visited some favorite places, and over dinner, I tried to get her to talk about her illness in something less than medical terms, without success. In subtle and not-so-subtle ways, she'd change the subject, turn a question around; she didn't want to go there.

The weekend ended quickly, and when she and her boyfriend drove away, I thought to myself: I'm worried about her, she's not emotionally processing what's happening. Later, though, when talking about the visit with my wife, I started to think, well, um, maybe she's processing just fine. Maybe she's doing all kinds of work inside and she's just got her game face on. Maybe you're a jerk for expecting that she would at some point light up and spout some mystical wisdom for the benefit of those who were not sick, that they might live more meaningful lives. Maybe you're really just hoping she'll offer something to help your own damn processing, which has been going on for 13 years and has not transformed you into some kind of incontinent Buddha figure the way you thought it might.

So I'm not going to try to be Darcy Wakefield's pen pal. I'm going to read her book, and do some more of my own processing. It's going okay, actually.

Link to NPR site with audio clip of Darcy's sister reading Darcy's commentary.
And by the way, how hard would that be, to be Darcy's sister, to give voice to Darcy's words?

Tuesday, September 20, 2005

Neurorehabilitation and MS

Here's the deal: if you're like me, your MS treatment has two components: 1) disease-modifying drugs (interferons, Copaxone) and 2) symptom management. My symptom-management component is aimed at 6 issues:
1. pain (Neurontin)
2. bladder (Flomax, Oxytrol)
3. fatigue (Provigil)
4. spasticity (Baclofen)
5. depression (nefazodone)
6. um, "intimacy" (papavirin)

For me, symptom management has basically meant a new drug for each new symptom, with plenty of adjustments for the side-effects that tag along with each new symptom. Granted, I also try to do stuff like exercise, stretch, yoga, meditate, and whatnot, some of it at a doc's recommmendation. But there's a growing body of evidence that supports individualized non-drug rehabilitative approaches to managing MS symptoms. A new Lancet article is on-point:
[S]ymptomatic therapies have benefits, [but] their use is limited by possible side-effects. Moreover, many common disabling symptoms, such as weakness, are not amenable to drug treatment. However, neurorehabilitation has been shown to ease the burden of these symptoms by improving self-performance and independence. Second, we discuss comprehensive multidisciplinary rehabilitation and specific treatment options. Even though rehabilitation has no direct influence on disease progression, studies to date have shown that this type of intervention improves personal activities and ability to participate in social activities, thereby improving quality of life. Treatment should be adapted depending on: the individual patient's needs, demands of their surrounding environment, type and degree of disability, and treatment goals. Improvement commonly persists for several months beyond the treatment period, mostly as a result of reconditioning and adaptation and appropriate use of medical and social support at home. These findings suggest that quality of life is determined by disability and handicap more than by functional deficits and disease progression.

Link to the abstract at Pub Med.
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Is MS one disease or many?

A few years ago, a former neurologist of mine said he thought that some day, we'd learn that the disease we call 'multiple sclerosis" was actually a bunch of different diseases. I was reminded of this by a couple abstracts in this morning's query of Pub Med:

Two forthcoming studies will investigate the long-term effects of early treatment with interferon beta-1b (IFNbeta) on the course of MS. The BENEFIT study will incorporate pharmacogenetic and pharmacogenomic analyses to determine the genetic elements controlling treatment response. BEST-PGx is an exploratory 2-year study that will investigate the value of RNA expression profiling and pharmacogenetics in predicting treatment response to IFNbeta in patients with early relapsing MS. The main goal of BEST-PGx is the identification of differences in gene expression profiles of patients showing differential treatment responses. In addition, this study may reveal new information relevant to the mechanism of action of interferon treatment in MS and also to differences in the underlying pathology of the immune system. These data may help us approach the goal of a really "individualised therapy" with increased efficacy, reduced adverse drug reactions and more efficient use of healthcare resources.

Link to the abstract.

Treatment of MS has advanced dramatically in recent years, with the introduction of beta-interferons, glatiramer acetate and mitoxantrone. However, not all MS patients respond well to treatment with these drugs, and this may be a consequence of disease heterogeneity. Although immunomodulatory therapy has been clinically proven to be effective in patients with relapsing-remitting MS, studies in secondary-progressive MS patients have only demonstrated a positive therapeutic effect with interferon beta-1b. The pathology and pathogenesis of lesions suggest the need for a subtype-specific treatment, which may be possible when observations from pathology can be acted upon in the living MS patient.

Link to abstract.

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Tuesday, September 13, 2005

Nature: Women on the pill cut short-term MS risk in half

New research indicates that taking the pill may delay the onset of MS, though it won't prevent MS. Apparently, some doctors currently warn women with a family history of multiple sclerosis not to take the pill.
Women who take the contraceptive pill cut their short-term risk of developing multiple sclerosis by nearly half, according to a survey. The study suggests that the pill could help delay onset of the debilitating neurodegenerative disease.

Link to article at nature.com (free reg req'd?)
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Sunday, September 11, 2005

Journal: What is the opposite of an Ironman?

It's still pretty early in the day, but just trying to get some stuff done around the house has me completely tuckered out. It's an indoor day today, hot like a furnace outside, so I've got a little list of odd jobs I meant to get through: hang a picture, make up a batch of hummus, tidy up the kitchen, etc. Now it's 2:30 pm, and I'm slumped in my chair. My legs are positively humming with that electric-charge, overheated feeling, and a trip to the bathroom--god, again already--means heaving myself up and lurching down the hallway like a drunk.

Monday is bearing down on me already. For the last couple months, I've been struggling to find the motivation or energy or panic-induced adrenaline to buckle down and get stuff done. This next week is looking like it could be really difficult even if I do finally get religion and get to work.

Even as I sit here stewing, our town is hosting a real live Ironman triathalon event. This morning, a bunch of people decided it would be a good idea to swim 2.4 miles around the lake, bicycle 112 miles, and then run a marathon. The newspaper ran a story about a woman diagnosed with MS in 1998 who will be competing:

As MS took a toll on her legs and vision, Carey Stillman found herself going through an intense psychological process. First came grief and denial. Then came anger. Then came enlightenment.

"I think a lot of people get this diagnosis and curl up in a ball," she said. "They let it take control of them, when they should take control of it."

If I was a more determined person, if I'd been less of a pessimist, if I had eaten more Wheaties and drank less beer, could I have been running marathons today? Could I have, by force of will, transformed myself and my life into an inspiring story of one man's refusal to give in to a crippling illess, a story ripe for a TV docudrama in which I am portrayed by Anthony Edwards (not a bad match, but maybe someone with a little more sex appeal)?

Friday, September 09, 2005

After medical pot is legalized, few Dutch patients buy from pharmacies

Pharmacoepidemiol Drug Saf. 2005 Sep 8; [Epub ahead of print]
Limited use of medicinal cannabis but for labeled indications after legalization.

Erkens JA, Janse AF, Herings RM.

PHARMO Institute, Utrecht, The Netherlands.

Since September 2003, cannabis is available for medicinal purposes in Dutch pharmacies to. It was anticipated that the medicinal cannabis use via illegal ways would decrease. The objective of this study was to get insight in the use of medicinal cannabis in daily practise as dispensed by community pharmacies and to characterize the users as well as the symptoms and conditions cannabis is prescribed for.A prospective follow-up study among 200 patients who filled a prescription for medicinal cannabis was performed in the period between September 2003 and January 2004. The patients filled out a structured questionnaire concerning symptoms and conditions and their experience with cannabis. Of all patients, 42% suffered from multiple sclerosis, 11% suffered from rheumatic diseases, and 60% of respondents already used cannabis before the legalization. Cannabis was mainly used for chronic pain and muscle cramp/stiffness.The indication of medicinal cannabis use was in accordance with the labeled indications. However, more than 80% of the patients still obtained cannabis for medicinal purpose from the illegal circuit. Because of the higher prices in pharmacies, ongoing debate on the unproven effectiveness of the drug and the hesitation by physicians to prescribe cannabis. Copyright (c) 2005 John Wiley & Sons, Ltd.

Link to abstract.
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Wednesday, September 07, 2005

Woman with MS gets 3 years for 33 pounds of pot

An ailing West Virginia woman was sentenced to three to five years in state prison by a Cumberland County judge yesterday for transporting 33 pounds of marijuana in her Jeep. The question is whether Sharon Glaser, 52, who has multiple sclerosis, will serve a day of that sentence.

Link to story in Penn. Patriot News.
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Tuesday, September 06, 2005

Bad elegies for NOLA

Everyone who has been to New Orleans has approximately the same memories of the place. Many have apparently felt the need to recount their recollections in print, littering editorial pages with some really awful writing. Fortunately, CJR does the reading for me, and collects some real stinky jewels, including this rococo turd in the LA Times laid ex-NYT editor Howell Raines:
Oh, wondrous city of music that floats from the horn and poems drowned in drink! Oh, cheesy clip-clop metropolis of phony coach-and-fours hauling the drunken Dodge salesmen of Centralia, Illinois, of shaky-handed failed watercolourists hanging unloved pictures on the wrought-iron fence at Jackson Square, of gaunt-eyed superannuated transvestite hookers, of Baptist girls suddenly inspired to show their tits on Chartres Street in return for a string of beads flung by a drunken college boy on the balcony of his daddy's $1,500 suite at the Soniat House -- must we lose even these dubious glories of the only American city that's never been psychoanalysed?

Then there's Rick Bragg in the Washington Post:
What a place, so at ease here at the elbow of death, where I once marched and was almost compelled to dance in a jazz funeral for a street-corner conjurer named Chicken Man, who was carried to his resting place by a hot-stepping brass band and a procession of mourners who drank long-neck beers and laughed out loud as his hearse rolled past doorways filled with men and women who clapped in time.

Dance, muthafucka!

Sometimes, CJR is like a Tivo for newspapers.

Saturday, September 03, 2005

Note to self

After a while, one good place for some of the refugees from Katrina might be Gravina Island, where the federal government will be spending $223 million to build a bridge from Ketchikan, Alaska. There's 1,800 acres of available timber on the island, and only 50 people so far. Trivia buffs note: the bridge will be nearly as long as the Golden Gate Bridge and tall enough to allow cruise ships to pass underneath.

Friday, September 02, 2005

Missouri to Medicaid recipients: buy your own damn feeding tubes

Missouri's Medicaid cuts went into effect yesterday. Besides dropping thousands of recipients entirely, the cuts eliminate coverage for durable medical equipment for adults living in their homes, unless they're pregnant or blind. This means no coverage for walkers, catheters, or feeding tubes.

Link to article in St. Louis Post-Dispatch.

Journal: There's something happenin' here...

...but what it is ain't exactly clear. As the news out of New Orleans and the Gulf Coast went from bad to worse, it was hard not to feel like I was watching some kind of moment in American history. It seemed like everybody felt that way, but nobody was able to describe it. Yesterday's NYT column by David Brooks is a good example. He cites some previous examples of how floods caused seismic changes in the political landscape, starting with the Johnstown Flood. About the current flooding, Brooks says:
What's happening in New Orleans and Mississippi today is a human tragedy. But take a close look at the people you see wandering, devastated, around New Orleans: they are predominantly black and poor. The political disturbances are still to come.

Anyone care to guess at what those political disturbances will be? Brooks stays vague, but hints that it's going to relate to the race and class inequalities made so painfully obvious by the flooding. CJR Daily's got it right:
We're still looking for some kind of analysis piece that examines this issue in depth, or perhaps an article that surveys the backgrounds of those affected. At the very least, those pieces that explore the now widespread looting or the sad and odorous fate of those who took shelter in the Superdome, need to clearly articulate the societal fissures (ones of race and class) that this flood has laid bare.

Thursday, September 01, 2005

IBD Linked to MS Risk

From WebMD:
People with inflammatory bowel disease have a higher than normal risk for developing multiple sclerosis and other autoimmune disorders, new studies show....A link between IBD and multiple sclerosis has been suspected for some time, but earlier studies have been conflicting. Powerful new drugs used to treat IBD, which block inflammation-causing tumor necrosis factor (TNF -- a part of the immune system), are also suspected of causing multiple sclerosis.

Medications that block TNF like Remicade and Humira are now required to contain labels warning of a possible link to multiple sclerosis and similar conditions. But all agree that their role in the disease is far from clear.


1 in 7 lack health insurance in U.S., census survey finds

You'd have to read pretty deep into the paper to get to this story. From the Milwaukee Journal Sentinel:
[T]he percentage of the population that is uninsured remained virtually unchanged in the past year at 15.7%. Since 2000, however, the number of uninsured has increased by 6 million, as soaring health care costs have prodded employers to drop health insurance as a benefit. That number would have been higher if not for a sharp increase in people getting health insurance through Medicaid and affiliated programs.

The United States - the only industrialized country without national health insurance - is projected to spend $6,423 per capita, or $1.9 trillion, this year on health care. That's about 50% more per capita than any industrialized country.

So as manufacturing jobs disappear and Americans move into low-paying service-sector jobs, more people are turning to Medicaid for health insurance. But now states like Tennessee and Missouri are dumping hundreds of thousands of Medicaid patients.

Link (free reg req'd)

TN's Medicaid budget solution: let the sick suffer

One way to solve the problem of state budget crunches and growing Medicaid costs is to cut people off entirely. Missouri's doing it. Bob Herbert's editorial in today's NYT notes Tennessee Gov. Phil Bredesen is doing it, too:
Thanks to Mr. Bredesen's leadership, Tennessee is dumping nearly 200,000 residents, some of them desperately ill, from TennCare, the state's Medicaid program. Cindy Mann, a research professor and executive director of the Center for Children and Families at Georgetown University's Health Policy Institute, concisely characterized the governor's efforts:

'What he's decided to do is save health care costs simply by not giving people health care.'

Link (free reg req'd)