Ankylose This!

A technical note

2010-02-03T11:37:00.005-05:00

With Blogger's upcoming discontinuation of FTP publishing, I have to re-engineer Ankylose This! somewhat -- either by moving it to a blogspot.com subdomain or by switching it to another blogging engine, like WordPress. At the moment I'm leaning toward switching to WordPress.

Whatever I do, I'll try to minimize any disruptions -- for example, ensuring that old links are forwarded to the new pages.

Facebook redux

2010-01-12T17:55:00.003-05:00

It seems to have happened quite suddenly. The ankylosing spondylitis group on Facebook grew to nearly 1,600 members while my back was turned (which is interesting when you consider I'm the group admin; I started it nearly two years ago). A lot of new discussions have been started; it's never been so lively.

Two new AS genes identified

2010-01-12T08:16:00.004-05:00

Researchers have identified two new genes associated with ankylosing spondylitis. From the press release: "Based on work from a genome-wide association scan, the team identified genes ANTXR2 and IL1R2 as well as two gene deserts, segments of DNA between genes on chromosomes 2 and 21 that are associated with ankylosing spondylitis. Importantly, the study also confirmed the Triple 'A' Australo-Anglo-American Spondylitis Consortium's previously reported associations of genes IL23R and ERAP1, formerly known as ARTS1."

Andrew George

2009-12-14T07:36:00.005-05:00

Andrew George, Liberal Democrat MP for St. Ives, was first elected to the British House of Commons in 1997. He's also had ankylosing spondylitis -- what he calls "a milder case," which, given his ability to work as a member of Parliament for the past 12 years, is self-evident -- since he was a teenager. He's been campaigning for broader access to anti-TNF drugs and is a member of the NASS's panel of experts. He also says he's one of three British MPs with AS (he's not about to disclose the identities of the other two).

Ankylosing spondylitis and work

2009-11-30T15:47:00.004-05:00

The National Ankylosing Spondylitis Society conducted a survey of 324 of their members in August and September 2009. More than half of the respondents (54 percent) with severe AS identified their workplace as the part of their lives most affected by their disease. About a third (38 percent) said that they'd received advice on coping with work from either a health care professional or their employer, and around half said that their doctor had never discussed work issues with them. Press release.

I'm both nodding in recognition and disturbed by these results. I could say quite a bit about how AS has affected my own career prospects and my ability to work full or even part time. I was under the impression that much of the treatment we undergo was aimed in large part at getting us to stay in or return to the workplace (or, to put it another way: without treatment we would be unable to work). Does it say something about the quality and effectiveness of our treatment if so many of us are reporting work issues? If nothing else, managing workplace issues may be a missing link in the total care package.

Medical News Today on uveitis

2009-10-06T12:34:00.001-04:00

Medical News Today has an article today on uveitis, one of the more commonly encountered peripheral symptom of ankylosing spondylitis (and, fortunately for me, one I haven't experienced yet).

SAA training video for emergency first responders

2009-09-18T18:41:00.003-04:00

Those of us with ankylosing spondylitis dread getting into an accident: our spines are more fragile and less flexible, and we're at greater risk of spinal fracture or spinal cord injury. To that end, the Spondylitis Association of America has put together a training video for emergency first responders setting out the special needs of patients with ankylosing spondylitis. Press release.

AS forum in Victoria, B.C.

2009-09-18T17:07:00.004-04:00

An ankylosing spondylitis forum hosted by the Arthritis Society is taking place in Victoria, British Columbia on Thursday, October 1, between 2:00 and 4:30 p.m., at the Victoria Arthritis Centre on 2680 Richmond Road (map). Event listings here (scroll down) and here. Free to attend, but you must register in advance.

The NHS on ankylosing spondylitis

2009-09-05T10:13:00.003-04:00

England's National Heath Service has a multi-page guide to ankylosing spondylitis; it's now permanently linked on the sidebar, under "About AS." Meanwhile, BryanUK is one of seven arthritis bloggers on the NHS website: his first posts talk about his diagnosis and pre-TNF treatment, his first week on Humira (I didn't know you had to avoid certain foods!) and family support.

Man with Ankylosing Spondylitis on Bill Moyers' Journal

2009-08-21T21:41:00.002-04:00

This evening's episode of Bill Moyer's Journal featured several Americans struggling with serious health conditions for which they couldn't get adequate treatment because they lacked health insurance. One of them, Carlos Benitez, had been struggling for years with back pain that he was trying to treat with over the counter pain meds. The medications were causing bleeding into the stomach, and his blood loss was so great that he had to be hospitalized and transfused. He was hunched over, had limited neck mobility and had lost seven inches in height. Of course, the minute I saw him, I recognized that he had ankylosing spondylitis, and the diagnosis was confirmed by the doctors that he was able to see as a result of his participation in the documentary.

What surprised me was that the doctors immediately started talking about surgery. he could still drive, and he had some neck mobility. After exploring surgery options in Mexico, he was able to get spinal surgery for free as a result of the documentary. The physicians were able to restore four inches of his height, and he was pain-free several months later.

The structure of the documentary didn't allow them to go into a lot of detail about life with AS. I worry that it left the impression that surgery is a cure. But it was interesting to finally see someone talking about AS on national TV.

Health Canada on TNF blockers and cancer in children

2009-08-20T20:55:00.005-04:00

Further to this earlier post, Health Canada has issued a safety update on TNF blockers and cancer in children and young adults. (Disclaimer: I work for Health Canada, but only in the correspondence unit.)

Chinese herb better than sulfasalazine

2009-08-19T06:56:00.006-04:00

A new study suggests that extracts from a Chinese medicinal plant, Tripterygium wilfordii, may be more effective in treating the symptoms of rheumatoid arthritis than sulfasalazine. While sulfasalazine may not be the first drug that comes to mind for inflammatory arthritis, I was on it for a while myself (when I was trying a few different treatments). Since the treatments for RA are usually directly applicable to ankylosing spondylitis, this may well have some implications for how our disease is treated down the road. The analogy that comes to mind is willow bark and acetylsalicylic acid (Aspirin).

New SAA Website

2009-08-15T06:45:00.002-04:00

The Spondylitis Association of America announced this week that they've redesigned their website. Not bad.

FDA links TNF blockers to cancer in children

2009-08-07T10:55:00.006-04:00

The U.S. Food and Drug Administration is requiring that TNF blockers have a warning added to their labels indicating an increased risk of cancer in children. "An analysis of U.S. reports of cancer in children and adolescents treated with TNF blockers showed an increased risk of cancer, occurring after 30 months of treatment on average. About half of the cancers were lymphomas, a type of cancer involving cells of the immune system. Some of the reported cancers were fatal." More information from Newsday, the Wall Street Journal and WebMD.

Generic versions of biologics?

2009-08-03T10:52:00.004-04:00

While there are generic equivalents of many chemically based drugs that cost patients a fraction of the brand-name cost (thanks, I suppose, to the original drug patents expiring), this is not the case for the high-cost biologics -- like Enbrel, Humira and Remicade -- that many of us are turning to for relief. That high cost is raising the question of how long brand-name biologics can be exempt from market competition from "biosimilar" or "biogeneric" drugs -- especially in the U.S., where the high cost of drugs and cost containment are a crucial part of the health coverage debate. The Chicago Tribune has the story.

Public-awareness campaign for AS launched in Ireland

2009-06-24T12:20:00.006-04:00

When your disease isn't that well known, it can be a little annoying to witness public-awareness campaigns for diseases and conditions of which the public is already much more aware than yours. So it's with some interest that I note the launch, by the Ankylosing Spondylitis Association of Ireland, of a public-awareness campaign for ankylosing spondylitis in Ireland (naturally enough). The campaign is called Get Your Back Up; the URL redirects to the Association's website.

Golimumab approved in Canada

2009-04-14T07:21:00.004-04:00

I'm trying my best to step back a bit from the steady stream of news coming in about TNF-alpha blockers (i.e., biologics), because it can drown out everything else about our disease. But I have a selfish interest in the news that golimumab, which now has the trade name of Simponi, has been approved in Canada for the treatment of rheumatoid arthritis, psoriatic arthritis, and ankylosing spondylitis; it's apparently to be used in combination with methotrexate, and, like other biologics, it's indicated for AS when conventional (i.e., affordable) therapies have failed.

Previously: Golimumab and ankylosing spondylitis.

People with AS in the news

2009-02-18T18:03:00.003-05:00

Thanks to etanercept (Enbrel), 45-year-old Andrew Hodgkinson, a Briton who has spent more than two decades with ankylosing spondylitis, trekked to the Mount Everest base camp last November: Birmingham Mail, Daily Mail.

In May, 37-year-old venture capitalist Vineet Buch will compete in the 2009 Molokai Challenge surfski race in Hawaii; Buch has had AS for 16 years.

British footballer Bryan Gunn, who continued to play for the Norwich City football club for years after being diagnosed with AS (see previous entry), has now been made manager of the club: Eastern Daily Press; Evening Star; Scotland on Sunday.

Calgary Herald: Using MRI to diagnose AS, plus more

2009-02-14T09:05:00.003-05:00

A Calgary Herald article ostensibly about using magnetic resonance imaging (MRI) to speed up the diagnosis of ankylosing spondylitis -- most of us apparently go between seven and 10 years before being properly diagnosed -- also goes on to talk about ankylosing spondylitis in general, its symptoms and effects, and its treatment. It points out that the young men who predominantly come down with the disease are the least likely to seek treatment and the most likely to suck it up, and explicitly mentions the big money behind biological response modifiers (i.e., TNF alpha blockers, biologics, etc.). Worth a read, especially for people needing an introduction to our disease.

B.C. drug plan to cover TNF drugs for AS

2008-03-05T20:33:00.004-05:00

The Vancouver Sun reports that British Columbia's provincial prescription drug plan will cover adalimumab (Humira), etanercept (Enbrel) and infliximab (Remicade) for patients with ankylosing spondylitis who meet the criteria of the plan's Special Authority program.

Update, March 8: Reaction from the Arthritis Society, which says that they and others have been lobbying the government for this decision for years.

Quack cures for arthritis

2008-03-02T19:50:00.001-05:00

About.com: How to spot a quack cure for arthritis.

Saskatchewan approves Enbrel, Humira for AS

2008-02-21T20:00:00.004-05:00

Amazing what a change of government does. Saskatchewan's provincial drug plan now covers Enbrel and Humira for ankylosing spondylitis under Exception Drug Status coverage.

Update: CBC News coverage. Remicade wasn't approved because it costs more.

Previously: More about Saskatchewan's TNF coverage; Saskatchewan to AS patients: No biologics for you!

ACE demands biologics coverage for Aboriginal Canadians

2008-02-15T21:55:00.008-05:00

Fresh from going after Saskatchewan for its refusal to cover biologics for AS, Arthritis Consumer Experts is now turning its attention to the drug coverage provided to Aboriginal Canadians by the Non-Insured Health Benefits program of Health Canada's First Nations and Inuit Health Branch. Noted without comment -- I'm presently working on contract at Health Canada.

More about Saskatchewan's TNF coverage

2008-01-26T09:25:00.000-05:00

A follow-up article from the Regina Leader-Post on Saskatchewan's coverage of biologics -- they're covered for rheumatoid arthritis, two out of three are for psoriatic arthritis, but none for ankylosing spondylitis -- suggests, as an aside, that the newly elected Saskatchewan Party government may reverse the earlier decision not to approve coverage for AS. Indeed: why should our disease be treated, pun intended, differently?

Previously: Saskatchewan to AS patients: No biologics for you!

Living with arthritis

2008-01-12T06:56:00.001-05:00

Ida Weibel's personal essay for Newsweek's Web site, Living with Arthritis, is a must-read: even though she' spent 10 years living with rheumatoid arthritis and not ankylosing spondylitis, anyone with a chronic debilitating illness will recognize her experience. This passage, for example, is just as relevant to us:

When RA patients complain about their illness, few understand or acknowledge their suffering. Every adult has experienced a painful elbow, knee, finger, or some other joint that interferes with physical activities. But people can be dismissive of our chronic problems because RA isn't life-threatening and may seem less serious than some other diseases. Those with rheumatoid arthritis, especially those with severe symptoms, are often silent and solitary sufferers.

Via About.com Arthritis.