Ankylose This! Living with Ankylosing Spondylitis

Thursday, September 30, 2004

Breaking news: Vioxx withdrawn from the market

Citing data from a three-year colon cancer trial that showed an increased risk of heart attacks and strokes after 18 months of taking the drug, Merck & Co. announced a worldwide withdrawal of the popular cox-2 anti-inflammatory drug Vioxx (rofecoxib) today (CBC, Reuters). In its press release, Merck essentially told patients to stop taking the drug:

Patients who are currently taking VIOXX should contact their health care providers to discuss discontinuing use of VIOXX and possible alternative treatments.  In addition, patients and health care professionals may obtain information from and, or may call (888) 36-VIOXX (1-888-368-4699).

Vioxx is one of the most frequently-prescribed medications out there: in Canada, it's been in the top ten since 2001. I personally have never taken it, but I know one or two friends who've been on it for serious injuries or chronic conditions.

Tuesday, September 28, 2004

What's anakinra?

According to this Reuters article, a new study suggests that anakinra may be effective against AS. The three-month study gave daily injections of the drug to nine AS sufferers for whom normal treatment didn't work. This is all very interesting, but it's also the first time I've heard of anakinra. Nor does the article mention what kind of drug it is -- biologic, cox-2 inhibitor, or NSAID. Must investigate further. It's still at the clinical stage, so it may simply be that we haven't been subjected to the onslaught of pharmaceutical marketing yet.

Wednesday, September 22, 2004

Some AS mailing lists

Mucking around the Yahoo Groups site, I've found the following mailing lists that deal with ankylosing spondylitis:

I haven't joined any of these yet, but I'll have a look and report back.

If you've got, or know of, a mailing list, community or site for AS sufferers, drop me a line and if I like it I'll post it here.

Wednesday, September 15, 2004

My life with AS

My experience is similar to Richard's: I've tried a lot of different medications and I don't do my exercises either.

I was diagnosed in December 1997, after complaining of various back and hip pains for a good half a year and averaging five hours of sleep a night. I was 25.

Since then I've mostly been on high doses of naproxen: 1,000 mg/day, increased to 1,500 mg/day during flares at my discretion. I've experimented with other NSAIDs, with poor results: celecoxib (Celebrex) was far too weak for my case; indomethacin did funny things to my head; diclofenac (Arthrotec) did funny things to my liver (I was prescribed double the adult dose, and took sulfasalazine at the same time). Naproxen -- crude, powerful naproxen -- has given me the best results with the fewest side effects.

You can just imagine the effect on my stomach lining. Right now I'm taking Pantoloc for the stomach; I've used misoprostol and famotidine prior to this, but Pantoloc works better than that.

I had a stiff neck early on but it's mostly resolved itself since (those neck exercises are easy to do at your desk, by the way -- they were the only ones I ever did with any regularity). Otherwise I'm in the same boat as Richard: sedentary Ottawa-area government and tech work is inimical to a happy spondylitic spine. We should be forest rangers or something -- actually, I'm serious: in September 1998 I hiked over 65 km in Banff National Park and had no pain afterward for three weeks.

My inflammation seems to be focused primarily on the sacroiliac joint and lower spine, with secondary effects on the rib cage, ankles, elbows and wrists during severe flares. Overall flexibility and mobility is very good, considering, but I'm in at least some discomfort every day.

I've noticed that flares occur during periods of extreme stress, and I'm looking into that. I've always been a stressed-out individual, even as far back as junior high school. Stressful incidents tend to exacerbate it. Family and domestic conflicts are killer. At work, the problem isn't so much so-called "high stress" deadline-driven periods of panic -- those I can handle comparatively well. But not hostile work environments, unfriendly co-workers, or unresolvable unpleasantnesses. Travel isn't good either: I stress out just before departure and usually wake up with profound back pain during the trip.

Right now I'm in a doozy of a flare. I was away over the weekend and am in the midst of conflict with various friends and family members, so this is no real surprise. Cause and effect. More pills, please.

my experience

I don't have a lot to add. It took me a long time to get a proper diagnosis. I had typical onset age/symptoms (looking in retrospect). My rheumatologist had me try various meds. After a bunch that did nothing for me (um, Naproxin? Relafen? I don't remember all the names) I finally got on Celebrex and got instant relief.

UPDATED: My new rheum tried me on Indocid and I had terrible reaction to it, it gave me blinding headaches.

It took forever to get an appointment with Arthritis Society, but once I did, they were very helpful. I went there on multiple successive visits (it's free). They gave me lots of exercises to do. I did none of them.

My main problem in general is that I do no exercises (other than walking).

In general the AS doesn't interfere much with my life, I'm sore all the time but it's not debilitating.
I have very limited mobility in my neck but this would get better if I ever did any of the aforementioned exercises.

I think the most important aspects of this thing are to get it diagnosed early (be aware of symptoms and get a qualified rheum to check it out) and then just exercise and good diet, like everything.

-- Richard

Ramesses II didn't have AS?

When you've got an obscure disease, it helps to know that a few famous or semi-famous people have had the same disease. In the case of ankylosing spondylitis, you have to look a little harder. Ed Sullivan had it -- that explains the stooped shoulders. Former baseball player Rico Brogna, who retired at the end of the 2001 season, has it. And the Egyptian pharaoh Ramesses II is supposed to have had it.

Except now maybe not. According to Canadian and French radiologists, Ramesses, who reigned from 1279 to 1212 BCE, had a degenerative arthritic disorder called diffuse skeletal idiopathic hyperostosis instead of AS.

So much for having a chariot-riding warrior king who fathered 92 kids as your role model.

Methotrexate effective against AS?

Methotrexate has been mentioned as a possible drug for ankylosing spondylitis sufferers. Now a new Mexican study offers some direct evidence, through clinical trials, of methotrexate's effectiveness against AS. (Though I was surprised to see that the researchers referred to sulfasalazine as standard treatment, rather than good old, stomach-rotting NSAIDs. That's a gap of a few decades or so between sulfa drugs and cox-2s, isn't it?)