The Scotsman has a piece on snooker player and ankylosing spondylitis sufferer Chris Small that talks about his "health problems": it mentions that he's been on steroids to relieve the pain, and that he's tried "mouse extract" -- one of the biologics, no doubt -- but that his body rejected the treatment (see previous entry).
Colby Cosh has a fascinating piece from a family physician who explains the difference between regular NSAIDs and COX-2 inhibitors. Which, as it turns out, is not much, other than the stomach issues. And that's the problem.
Remember I said that COX-2, in addition to being involved with inflammation, also works in the kidney and affects blood pressure. What this means is that even though Celebrex and Vioxx are safer on the stomach than older drugs like, oh say, Naprosyn, they were NO SAFER on the blood pressure and kidneys. And even in terms of effect, all the studies showed that Celebrex and Vioxx were just as effective in controlling pain as the older drugs, not MORE effective.
What does this mean practically? Well, before the new drugs came out, it was understood that you didn't give NSAIDs to people over 65, or patients with blood pressure, kidney, or heart problems. Not because of the stomach issues, but because of the other things I mentioned. What got lost in all the marketing was that Celebrex and Vioxx shared those same concerns, and yet they were specifically marketed at that age group. Whether it was the picture of the old lady in the pool, or the geriatric couple jumping on their bed, the message was clear--these drugs are safe for these people.
Useful background information, to be sure. Colby's blog is hand-coded, so his permalinks change over time; check his archives if you're coming to this page later.
Inside Cricket Magazine has an interview with Michael Slater, whose cricket career was halted by ankylosing spondylitis. Slater talks frankly about dealing with the disease and with the ensuing depression -- something to which, I think, we can all relate.
I was diagnosed with AS in 1986, after nine years of preclinical manifestations (uveitis, bouts of joint pain, twinges, etc.) I had both hips replaced in November, 1995, after having spent about 18 months on a walker or in a wheelchair. My doctors said that my case was unusually aggressive, especially because I am a woman. I am convinced that the deterioration of my hips was precipitated by the amount driving that I was doing (47 miles each way to work) combined with the stresses of a corporate middle management job, parenting, housework, and supporting a spouse who found himself downsized by the defense cuts resulting from the end of the Cold War. The hip surgeries gave me back the ability to walk, for which I am grateful. The pain I endured before and after the experience has taught me empathy and have demanded that I develop patience. Not much more to say than that.
Treating ankylosing spondylitis usually means medication and physiotherapy. But sometimes it may mean hip-replacement surgery. When I first read about it, I thought it was the treatment of last resort. To my relief, not one of my doctors has ever mentioned it as an option -- but that might simply mean that my case is not severe enough and has not progressed enough. As a result, I'm surprised to find that at least three of the people who have written to me about this site or who've signed up here have had, are facing, or have considered hip-replacement surgery. Either they have a much worse case of AS than I do (which is quite likely given my progression to date), or the hip-replacement option is much more prevalent than I had thought.
I'm curious, so I thought I'd poll the rest of you. Have you had it done? Has your doctor recommended it? If so, how far along had the disease progressed and what other options had been exhausted before surgery was proposed?
Dear Friends,
I am a new joinee to this blog. I am coming from India. Let me tell smthing abt myself. I am recently diagnosed with AS, though it seems that AS has been active in me since last few years. When I had a flare up last month, my XRays shows that my hips (predominantly left hip ) is in very bad condition. Most of the doctors I visited suggested me to go for hip replacement to eliminate pain and limp. However I am only 25 yrs old, and not a good candidate for hip replacement. Although after the flare up was over, my hips has regained much of the range. I visted some of the best docs available in my country and they suggested that now I don't need hip replacement. Presently I am religiously taking physiotherapohy to maintain whatever range I am having. Do any of you have a similar experience? If so please let me know . As I am not sure till how much time I can postpone surgery. Presently I am on Indocap, sulphasalazine and methotraxate.
I also want to know any success stories in AS. Are there people with long history of AS and still living a contended life? I really don't want to loose confidence and will power to fight this disorder. I see it as my destiny to have this disorder. But I no longer want to crib abt it. Let us take it headalong and manage our lives to live with it ... Any positive responses from you people is welcomed.
This article leads with the proposition that expensive medications like infliximab (Remicade) may be best for rheumatoid arthritis (a disease similar to ours; what's good for RA is frequently good for AS). But it's facile and misleading: it misses the real point of the British study the article reports on.
Further down in the article, we learn that the study found that not only was infliximab plus methotrexate better than methotrexate alone, but also that the benefits of the treatment persisted for a year after the patients in the study stopped taking the drugs. Since infliximab and other biologics are impractically expensive ($12,000/year) to take for the rest of your life -- which is what we'd have to do -- the researchers were looking for less expensive applications of the new meds. If we can still benefit from infliximab while only taking it half the time, we've cut our drug costs in half. This isn't proven yet, but if these results can be replicated in other studies, we could be looking at something quite significant.
In March 1998, not long after I was diagnosed, I attended a day-long seminar on living with ankylosing spondylitis at the University of Alberta's Health Sciences Centre. (As I was a U of A Ph.D. student at the time, this was fortuitous.) It was run by an occupational therapist and a physiotherapist, and consisted of a pre-seminar physical assessment, discussions, lectures on the disease and on the latest research, and practicing our assigned exercises. Then we were sent on our way and told to keep doing those exercises.
Of course, I did them sporadically at best. When I was feeling good, I didn't feel the need; when I was in pain, I didn't feel able. I'm human.
My rheumatologist, at our first meeting, recommended a course of physiotherapy. The appointment with the physiotherapist came this morning. She asked a number of routine questions. She performed a very brief, almost perfunctory, flexion exam. And, after a brief pause, she came back with a photocopied sheet of exercises, almost every one of which I recognized from my 1998 seminar.
Physiotherapy seems to consist of an intial assessment and a homework assignment. Is that it? I'm a little crestfallen.
I guess this means I should do my homework. I apparently do need to be told twice.
Ankylose This! is a group blog about life with ankylosing spondylitis. Its authors post about their own experiences, medical news, and useful resources.
Disclaimer: None of us are doctors, and nothing in this blog should be construed as medical advice. We are simply patients trying to make sense of our disease.
