Ankylose This! Living with Ankylosing Spondylitis

Monday, May 30, 2005

Medical marijuana and ankylosing spondylitis

I haven't really heard about using marijuana to treat the symptoms of ankylosing spondylitis. Like glucosamine and going to the chiropractor, it's one of the things that well-meaning, uninformed and generally batty people ask about when they're trying to be helpful. And, years ago, I stumbled across a web site by an AS sufferer who'd taken to the weed to deal with his (extremely severe) case. At any rate, from what I've heard, and thanks to the years-long debate about the subject, I've heard plenty, I got the impression that there could well be some benefit in terms of pain relief.

(That's a long way from saying that toking up is the answer, as opposed to a dose of Marinol: as with industrial hemp advocacy, I'm a little suspicious that medical marijuana is being used as a stalking horse for people who are primarly keen on getting themselves baked. To which I say, fill your boots, or your bongs, rather; but let's be honest about motives.)

Anyway, I found it interesting that yesterday's feature in the Denver Post on the court battle over the U.S. federal ban on medical marijuana (also reprinted in the Baltimore Sun) profiled a university professor with AS who is one of 625 registered medical-marijuana users in Colorado, and who says he can't imagine living without it.

Sunday, May 22, 2005

The importance of community

Angela Odom was recently diagnosed with lupus. On her blog, she recently voiced a complaint that I can certainly understand: people with chronic illnesses need a community to help them understand and cope. I was fortunate to learn about the value of community when I worked at the Fox Chase Cancer Center as a young woman. When I was diagnosed with Ankylosing Spondylitis in 1986 at the age of 29, and especially when I became pregnant with my second child five years later, I desperately wanted that kind of community -- not only for myself, but for my husband and children as well. It was not to be. My doctors had never treated a woman with severe AS, much less a pregnant one. The local Arthritis Foundation had nothing to offer, either. The AS websites (such as this one) that have sprung up in recent years have been helpful in showing me that there are other people out there, and many of us are finding ways to go on with our lives.

And in the end, that is what we all have to do. Play the hand we are dealt, and do the best we can with it.

Thursday, May 19, 2005

The silver bullet

Bob J. writes,

I watch the Health Canada Notices of Compliance carefully, and noticed a new indication for Enbrel dated May 6. I couldn't find out what the new indication was for. Today I called Enliven services (I am on Enbrel even though it isn't approved) and they confirmed that it has now been approved for AS. I just started week seven and I've got to tell you that if there is a silver bullet for AS, Enbrel is it. [links added]

I've been trying to track down some record of the approval decision for Enbrel (etanercept) and can't find it, either in the Notice of Compliance or in Health Canada's Drug Product Database entry for Enbrel. I'm sure it's out there somewhere.

Etanercept is an anti-TNF-alpha biologic agent in the same class as infliximab (Remicade); see previous entry.

The Ottawa Health Research Institute has a "decision aid" (PDF) for people wondering whether they should take biologics for ankylosing spondylitis. Bob's experience with them isn't unique, but I suspect that this new class of drugs won't work for everyone -- nothing ever does.

Wednesday, May 18, 2005

Health Canada's COX-2 public forum

Health Canada is holding a public forum on COX-2 inhibitors in Ottawa on June 9 and 10, the CBC reports. More information here. Though I'll be in the middle of moving on those dates, I'm thinking about attending, if only to observe.

Monday, May 16, 2005

Playing in pain, part 3

Another news story about a high school athlete competing despite the pain of his ankylosing spondylitis. Jeff McMillan's football and basketball career was cut short by an early and severe case of AS -- he'd been wheelchair-bound for eight months -- but still manages to play golf, which is now a focus for him. Good on him, I say, despite my ambivalence about stories like this. See previous entries: 1, 2.

Friday, May 13, 2005

A change in the weather

After my rheumatologist confirmed that AS patients suffer more in spring and fall, I've been paying more attention to the seasonal aspects of my flares. I spent about a month, from mid-March to mid-April, with elevated pain and stiffness; I noted the onset here. And it turns out that I encountered something similar in September, though other factors were, as I mentioned then, involved.

Now for a more interesting data point: it hit 30°C here on Tuesday, but the temperature quickly plummeted after that: by yesterday morning it was hovering around -2°C. (It's 4°C as I write this.) Sharp pain started manifesting itself in the sacroiliac joint by Wednesday, and yesterday it had worsened, with the usual peripheral joints acting up. Which of course put me in such a good mood, which contributed to my snarling at people yesterday, which added to my stress, which . . . but I digress. I just thought it was noteworthy that a sharp change in temperature -- a cold front rolling in, fast -- might have such a profound and immediate impact on my AS. Subtler changes in the weather might have subtler effects that are harder to associate.

Anecdotal, of course, but something I'll try to keep track of.

Thursday, May 12, 2005

A Newby to BLOGGING but Oldie to AS

Thanks for allowing me to join you.
I'm not really sure what I'm doing but by some freak of internetry, I've landed on your blog site which is the same as mine. Only started blagging last week!!
So - you could go to my blog and read all about me and the art of waffle!!
As far as AS is concerned, I do have a further complication. I had a spinal tumour chopped out when I was 25. This has left me lame on my right side and reduced my overall spinal flexibility. The AS was discovered some years after when I had to visit a rheumatologist because I was still suffering from similar symptoms. I am now nearing 57. I have been on NSAID's and analgesia, among others, for over 30 years. During the last 4 years or so, I've started to experience gut and bowel problems and generally suffering more discomfort. Unfortunately, I had to move to a new location within the UK and still trying to find consultants to take me seriously. All that is happening is I'm being thrown from one consultant to another while they all try to work out if I've got a gut complaint, bowel cancer or the latest is Myeloma. I'm fucking sick of it. Spending all this time with the medics is doing my head in and I feel a depression coming on. Wouldn't anyone. I've already gone through hell with a failed business that's cost me £1000's and my private pension would buy me nowt through no fault of mine.
If anyone has any ideas what I should do next, please communicate. Thanks.

Wednesday, May 04, 2005

Running marathons with AS

"The doctors say I shouldn't be able to run but I do, so that's why I keep going. What pushes me through hard runs, marathons or whatever, is that I know what it's like to be crippled." The Edmonton Sun profiles Gary Poignant, journalist, marathon runner, and ankylosing spondylitis sufferer.

Tuesday, May 03, 2005

Exercise -- who knew?

Something we could have told you: "Lying around while suffering is probably the worst thing to do for a sore back, according to an exhaustive review on the benefits of exercise for chronic back pain that persists for months." Maybe having AS isn't as counterintuitive as all that.