Ankylose This! Living with Ankylosing Spondylitis

Thursday, May 25, 2006

Marathon woman

A 31-year-old woman with ankylosing spondylitis from Ajax, Ontario (east of Toronto) is training for the Honolulu marathon, the News Advertiser reports in a well-done story that explains our disease without minimizing or exaggerating its severity.

Synovial biomarkers and clinical trials

In a recent study, researchers found that changes in synovial tissue could serve as a means of measuring the effectiveness of clinical trials in patients with spondyloarthropathic diseases. Essentially, it's a new way of measuring whether a treatment is effective using a small patient sample over a short period of time. The researchers studied 52 patients over 12 weeks -- 20 were given Enbrel, 20 were given Remicade, and 12 were controls -- and could see the changes in the disease's progress through synovial tissue analysis. The implications? Being able to measure a new drug's effectiveness more quickly and effectively.

Wednesday, May 24, 2006

Slate: The Vioxx war

This Slate article about the kerfluffle between the Wall Street Journal and the New England Journal of Medicine over the Vioxx crisis is worth reading for its exegesis of the research that identified the problem with Vioxx (and other COX-2 inhibitors) in the first place.

See previous entry: Vioxx study withheld data: medical journal.

Sunday, May 21, 2006

Spam-clogged Yahoo! mailing lists

I've given up on this list and this list; they're getting clogged by spam and the list moderators aren't doing anything about it.

Thursday, May 18, 2006

Rare Disease Clubhouse

An article about a support group called the Rare Disease Clubhouse is giving me pause; either the reporter isn't taking good notes, the person in question has a case of AS several orders of magnitude worse than anything I've ever encountered, or there's some serious bullshit going on. Questionable text in boldface:

Woodruff suffers from ankylosing spondylitis, an autoimmune disease that is causing her bones to fuse together. There is no cure for AS, and medication required to slow the progression of the disease costs more than $450,000 a year.

Bullshit. The TNF-alpha meds -- Enbrel, Remicade and the like -- run about $15,000 a year at most. This is off by a factor of thirty. Of course, it depends on what else is being taken:
"Morphine, methadone, hydrocodone, penteramine, the hardest narcotics known to man don't put a dent in the excruciating pain welding my bones together," Woodruff said. And "you'd be surprised how ashamed people get when a doctor gives them a prescription for opiates," strong drugs that still afford little relief for intolerable pain.

While I know there are many people out there with a worse case of AS than I have, it does seem a bit much to declare that drugs used to treat pain in dying cancer patients are ineffective in a non-fatal arthritic condition. I'm sorry, did I say non-fatal?
Even when medication does ease the pain, the knowledge that death is looming has a heavy psychological toll.

Unless this is out of context, and she's referring to rare illnesses in general, this is unbelieveable bullshit if it's referring to AS. From what I understand, AS-related complications have occasionally been fatal -- and it's not like the NSAIDs I'm taking don't have their own risks -- but at no time have I ever been made to feel that I was living under a death sentence.

A serious case of hyperbole, here. I know it's hard to explain our disease, and I know it's easy for the people around us to minimize its severity because we "don't look sick," but there's a difference between emphasis, exaggeration and outright fabrication.

Wednesday, May 03, 2006

Playing in pain, part 6

Today's LA Times profiles Brian Annett, a 15-year-old swimmer with ankylosing spondylitis who nonetheless has qualified for a preliminary berth in the 100-metre backstroke. (It's worth noting that the backstroke is, according to my notes, the one athletic activity that people with even advanced AS can do.) To the article's credit, it pulls no punches about the disease's severity and doesn't make Annett out as a role model for his teammates -- which is something I've had issues with in similar stories in the past (see previous entries: 1, 2, 3, 4, 5).

AS and amyloidosis?

I'm confused by this press release:

Toronto freelance writer Michael Smith's account of the tragedy and perseverance that yielded powerful new drugs has earned this year's sanofi pasteur Medal for Excellence in Health Research Journalism.

His article, "A scientific whodunit", appeared in the Association of Universities and Colleges of Canada magazine University Affairs. It describes how the work of Queen's University biochemist Michael Axelrad was cut short in the 1970s by ankylosing spondylitis, a spinal inflammation that created a fatal build-up of amyloid deposits in his brain. His condition and fate became the focal point of ongoing research by Dr. Axelrad's colleagues, whose subsequent understanding of amyloid chemistry laid the foundation for new treatments of this neurological disease, as well as Alzheimer's and even atherosclerosis.

I'm confused because I haven't heard that amyloid deposits were an issue, and I've never heard ankylosing spondylitis referred to as a neurological disease before. Either there's something new for me to learn, or this is about something other than AS. I may have to track down a copy of this article.