Ankylose This! Living with Ankylosing Spondylitis

Thursday, October 28, 2004

Travelling with ankylosing spondylitis

I've always enjoyed travelling, but since I came down with ankylosing spondylitis it's gotten a lot harder for me. A recent trip to Winnipeg brought this home for me: I now expect elevated pain every time I travel, and this trip was, as I had predicted, no exception. But at least I'm at the point where I can analyse it a little bit.

From what I've observed, pain and inflammation due to AS are higher when I travel for three reasons:

1. Stress. Stress exacerbates autoimmune disease (about which see Gabor Maté's When the Body Says No). Travel is stressful. And travel is especially stressful for me: I plan out itineraries to each pee break, and rehearse every possible (and several impossible) worst-case scenarios in my head before I get under way. It's so bad that even on weekend excursions I have to leave the packing to my significant other -- I'm just too wound up to be useful. Once on the road (or at the airport or the train station), I'm fine -- in fact I'm more than fine: I'm an excellent long-distance driver, and my only problem with air turbulence is nausea, not terror. But getting to that point is sometimes only just short of traumatic. The end result is usually that my joints are screaming by the following morning.

2. Seating. When you've got a disease that requires you to move around a lot to stay relatively free of pain and stiffness, long trips can sometimes feel lethal. My father and I drove from here to Winnipeg in two days: that's roughly 25 hours of driving. By mid-afternoon each day I was desperately uncomfortable. Plane trips are in one sense better because they're shorter, but the seats are cramped and, at 188 cm (6' 2"), I don't have enough leg room. Train trips give me enough leg room, and I like trains generally, but sleeper class is prohibitively expensive and overnight in coach is uncomfortable: I've done it three times, and I've never gotten any useful sleep. So taking the train over long distances is impractical unless and until I'm filthy rich.

3. Sleeping. You're not in your own bed any more, and boy does that matter. I sleep on a fairly firm futon mattress, which seems to work; and I've had good results with an impossibly soft foam mattress as well. But when I travel, I usually end up sleeping on a box-spring/mattress combo, and for some reason that just kills -- it's even worse than camping, if you can believe it. Taking my orthopedic pillow with me certainly helps, and I can usually make it through the night, but I'm usually sore until noon -- at least it's morning stiffness and not a straight flare.

With all of these factors at play, it's a wonder I do any travelling at all. How is it with you?

Wednesday, October 13, 2004

Oncologist with AS is football videographer

Another story about someone with ankylosing spondylitis making good. An oncologist at Yale-New Haven hospital began taping football games when his AS ended his college football career. He's now the official videographer for Yale University's football team, the Yale Daily News reports.

Wednesday, October 06, 2004

arthritis drugs

The earlier post about anakinra got me wondering whether I had read about it anywhere.

Turns out Kineret® (anakinra) is some kind of interleukin-1 thing.

The one I was thinking about (I think) is Arcoxia, a COX-2 inhibitor from Merck.
I don't know how anyone keeps these things straight. We're all ending up talking language out of science fiction in order that everything have a unique brand name.

Here's an article from on The Newest Arthritis Medications.

-- Richard

Mötley Crüe guitarist has surgery

Mötley Crüe guitarist Mick Mars, who has ankylosing spondylitis, underwent hip-replacement surgery yesterday according to MTV's web site. Hip-replacement surgery, from what I understand, is used only in the most severe cases of AS.

Sunday, October 03, 2004

Vioxx recall affects South African former minister, AS sufferer

With so many people suffering from arthritis or related conditions (like ours), the Vioxx recall was naturally a big story worldwide. From today's edition of South Africa's Sunday Independent, a story about what arthritis sufferers are going to do next has the following tidbit about a former South African cabinet minister who also has ankylosing spondylitis:

Among those at a loss on what to do without the drug is Valli Moosa, former minister of the environment and tourism, himself an arthritis sufferer, who has used it for a number of years. . . .

The 47-year-old former minister, who retired from the cabinet this year, declared at the meeting on Saturday that he had been fighting a battle with arthritis for most of his life.

Moosa said he had been suffering from ankylosing spondylitis since he was about 14 years old but was only diagnosed with the disease when he was in his mid-30s. . . .

He said that for many years he had battled with pain in his back and hips and as a result had never led an active life. He said that even after constant visits to doctors throughout his school and university life, his disease was not diagnosed until he was in his mid-thirties.

"It was embarrassing for me because I couldn't walk properly or find a comfortable sitting position and doctors constantly told me that there was nothing wrong with me," he said. Close to 10 years after his diagnosis, Moosa said that he was now more active and fitter than he had been in his life.

He has conquered Mount Kilimanjaro and took part in seven Cape Argus cycle tours. He said that he finally reached a point where he was no longer prepared to live with the disease but the disease "is going to have to live with me".

On a related note, the Vioxx recall reminds me of the situation, half a century ago, where radiation treatments were found to be effective against ankylosing spondylitis, but tripled your chances of getting leukemia. While most of us would rather accept certain daily pain than possible cancer, I did spend a moment contemplating the ifs. And I'm sure that people for whom Vioxx has been effective and who've used it for years are weighing the risks themselves right now. Especially when, for so many of us, we've tried so many different drugs and only one seems to work well.