Ankylose This! Living with Ankylosing Spondylitis

Saturday, June 23, 2007

Bryan Gunn

A profile of Bryan Gunn, who, despite being diagnosed with ankylosing spondylitis at age 28, continued to play football/soccer for the Norwich City Football Club until he was 35.

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Friday, June 15, 2007

Results of two-year clinical trial reported

During a two-year clinical trial, the results of which were announced today, ankylosing spondylitis patients taking Remicade (infliximab) "experienced significant improvement in spinal mobility ... [and] showed sustained reductions in spinal inflammation through two years as detected by magnetic resonance imaging." The ASSERT (Ankylosing Spondylitis Study for the Evaluation of Recombinant Infliximab Therapy) trial involved 279 patients, 78 of whom received a placebo. I'm assuming this is a company-sponsored study.

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Thursday, June 14, 2007

Referred pain

This post about referred arthritis pain takes me back: after I came down with the symptoms of AS, but before I was diagnosed with it, I complained about pain in the neck and shoulders. But the bone scan revealed severe sacroilitis -- inflammation of the sacroiliac (pelvic) joint. My doctor asked why I didn't report on that -- I was too preoccupied with the neck, shoulder and upper back pain, which was keeping me from sleeping. The sacroilitis, to be sure, was keeping me from walking properly, but it seemed a secondary thing. Also, after several months of sleep deprivation I wasn't thinking too clearly.

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Wednesday, June 13, 2007

Pharmaceutical triage in the UK

We've heard before about the difficulties British ankylosing spondylitis patients have had trying to get coverage for the latest (and presumably greatest) treatments, the expensive TNF-alpha blockers. This BBC News article affords some insight into the process by which an individual patient can have such treatments approved -- or denied:

The first business is two requests from patients with a painful rheumatic disease, ankylosing spondylitis.

They want drugs which cost £11,000 a year, but haven't yet been given the seal of approval by the health watchdog, the National Institute for Health and Clinical Excellence (NICE).

Other local patients might be eligible -- so the question is: are these exceptional cases?

"For a PCT our size, I guess we're looking at anywhere between 250 and 500 cases who may potentially benefit from this drug," said the public health director.

Another panel member said: "The doctor who's presented this says the severity of this patient's symptoms is unusual -- but that's not the same as exceptional.

"I guess for me it's the uncertainty about how this drug will affect this patient. Funding it would be a speculative move -- given the evidence we've got here."

Both requests are turned down.

It's worth noting that biologics are usually indicated when more conventional treatments are ineffective. The whole lot of us aren't going on Remicade, and many of us, I suspect in my limited and unqualified way, won't ever need to.

Previously: Postcode lottery for TNF-alpha in the UK; AS and prescription drugs in Scotland.

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Friday, June 08, 2007

AS sufferer may join oxycodone class action

For most of us, the medications we take to treat the pain and inflammation of ankylosing spondylitis are not addictive: the street value of naproxen, for example, is pretty low. But some of us have been prescribed opioids like oxycodone -- e.g., OxyContin and Percocet -- which are addictive. More addictive, in fact, than was previously let on: oxycodone's manufacturer, Purdue Frederick, and its executives were fined more than $634 million last month for understating the addictiveness of their drug. Now a class-action lawsuit may be in the offing in Canada, and a Cape Breton man with ankylosing spondylitis, who was prescribed Percocet, then OxyContin on top of that, and then turned to crime to feed his oxycodone habit, is interested in joining it, the Cape Breton Post reports (also reprinted in the Halifax Chronicle Herald).

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