Ankylose This! Living with Ankylosing Spondylitis

Saturday, November 12, 2005

At the Ottawa forum on AS

Last Saturday I attended the Arthritis Society's public forum on ankylosing spondylitis in Ottawa (see previous entry). Here's my long-delayed (and long-winded) writeup of the event.

My misgivings about having to register for the event were unfounded (I thought they were just after our personal data). More than 100 people signed up -- roughly twice what they had expected -- and the small room was literally packed. Which, when you consider that it was packed with people with ankylosing spondylitis, who shifted uncomfortably in their chairs and needed to get up for a stretch and a pace, was less than ideal.

Michael Mallinson, the new president of the Ontario Spondylitis Association, said that the turnout indicated a need for an Ottawa support group. I suspect the need has been there for some time; they just haven't necessarily discovered the number of people in the region with AS. I signed up with the OSA in 1999 or 2000 but let my membership lapse after one year because it was too Toronto-centric; other than the newsletter, which I thought below average, there was very little to offer me as an Ottawa resident. That local support group, had it existed, would probably have earned them a membership renewal from me. Now, of course, that I'm living in rural Quebec, even with that Ottawa group it may be of limited use to me, with much of the information presented at that meeting predicated on the Ontario health care system.

I didn't mingle much -- I don't do well in crowds to begin with, and I was still in my autumn flare-up, so I was still pretty sore and even less gregarious than I normally am. And I didn't see anyone I knew, though apparently someone was there as well. Even so, I think most people there appreciated the sociability. As we all know, this is a very lonely disease. When you spend a good deal of time explaining ankylosing spondylitis to people who've never so much as heard of the name, or explaining how you are, in fact, sick even though you don't look it, to be in an environment where everyone else -- sufferer and caregiver alike -- knows exactly what you're going through, is quite welcoming.

On the other hand, it can be quite sobering. Despite profoundly painful flareups, I suspect my own case is quite moderate. My disease responds relatively well to NSAID therapy, and after eight and a half years I have no apparent spinal fusion or loss of mobility. At the meeting I saw someone who presented the classic fused, curled up spine that we'd get without any treatment. There were a few canes and at least one wheelchair. For Jennifer, my significant other, it was a harsh brush with reality: she knew from the outset that I had ankylosing spondylitis, and has had to live with me living with it for more than three years, but I think this was the first time she was brought face-to-face with how serious this disease can be.

Anyway, I should mention what went on at the event.

First up was Dr. Suneil Kapur's presentation. He's a professor of medicine at the University of Ottawa and an associate staff rheumatogist at the Ottawa Hospital. His PowerPoint presentation was an excellent summary of the range of diseases known as the spondyloarthropathies, their symptoms and their treatment.

He began with a summary of the five spondyloarthropathies -- ankylosing spondylitis, reactive arthritis or Reiter's syndrome, psoriatic arthritis, spondylitis with inflammatory bowel disease, and undifferentiated spondyloarthropathy, which presents the symptoms but does not meet the criteria for a diagnosis of one of the other diseases -- and the criteria for diagnosing ankylosing spondylitis specifically. Together, the spondyloarthropathies are one of the most common chronic inflammatory conditions, affecting between one and two per cent of the population. They are comparable to rheumatoid arthritis in terms of disability, pain and loss of function. Ankylosing spondylitis affects 0.9 per cent of the population; three times as many men as women are diagnosed with AS -- the ratio was at one point thought to be 9:1, but it turns out that women were being underdiagnosed -- and 50 per cent of sufferers take more than six years to be diagnosed (I was lucky; it took about six months for me.)

Kapur then outlined the current state of treatment of the disease, the goals for which are, he said, to relieve pain, decrease stiffness, relieve fatigue, maintain posture, achive good physical function, and maintain a good psychological state. Exercise and physiotherapy involving a multidisciplinary approach seems to do better than doing exercises on your own (funnily enough, see previous entry), and Kapur noted that lying prone for five to 10 minutes can help prevent kyphosis (i.e., fusing your neck vertebrae).

In going through the pharmacological start of the art -- NSAIDs (e.g. COX-2 inhibitors, older drugs like naproxen and indomethacin), local therapies (e.g. steroids), and DMARDs (e.g., sulfasalazine and methotrexate) -- Kapur pointed out current drugs' shortcomings: side effects that are frequently severe, variable effectiveness, and the fact that these treatments only treat the symptoms, rather than attack the disease itself.

Which brought him, of course, to a discussion of anti-TNF medications, about which much has been said on this here blog. It's no coincidence that the event's sponsor, Schering Canada, is this country's producer of Remicade (infliximab), but to be fair, we've been talking about anti-TNFs for a while, and many of us have reported good results when taking them.

Kapur explained in some detail how the three major anti-TNF medications -- etanercept (Enbrel), infliximab (Remicade) and adalumimab (Humira) work: etanercept is a receptor; infliximab and adalimumab are antibodies, with infliximab derived from mice and adalimumab from humans. Lots of biochemistry in this part of the presentation, so of course I was bewildered. But neat to have it explained.

Anti-TNFs cropped up later in the event as well. One questioner asked why her anti-TNF treatment (I forget which) didn't work with her after a year; Kapur mentioned that a treatment may lose effectiveness as the body builds up immunity to it.

Later, Louise Sarault explained how her sister Lise, whose case of AS was so profound that she could barely walk even with treatment, began to function again after her first infusion of infliximab. (A great story, but with Schering hosting, was this a bit of an infomercial?) I noted that she experienced some pretty significant side-effects, including a throat infection that lasted for months, which made me think that anti-TNFs, which do suppress the immune system, may only be a good idea in profoundly severe cases. For me, right now, the side effects and imperfect effects of naproxen seem far less than what Lise has gone through, but her case was much more severe than mine, and so, made infliximab's side effects worth it.

There were some questions later on about paying for infliximab, which a representative for Schering fielded: at $4,000 a treatment, even 80 per cent drug plan coverage leaves you with a pretty stiff bill; there are programs that can reduce the cost to zero or very nearly so.

But it wasn't all just an infomercial for anti-TNFs; there was a physiotherapy component as well. Two physiotherapists -- Karen Gordon and Marion Russell-Doreleyers -- conducted exercises (more simple than the complicated sheets I've been given) and answered questions, such as about sleeping with a firm mattress (bottom line: use what works, though it seems that medium-firm works best for most), pilates (good in that it strengthens core body musculature, but can become too strenuous -- know your limits) and so forth.

Other questions. Someone asked Dr. Kapur about AS and pregnancy. It doesn't seem to go into remission during flareups the way that rheumatoid arthritis does, but it doesn't worsen, either. Because of the involvement of the pelvis (and the SI joint in particular), birthing can be more difficult, and C-sections are frequently resorted to. Some medications, such as methotrexate and Celebrex, are teratogenic and should be avoided during pregnancy; others, like ibuprofen and naproxen, appear to be safer, but the risk of bleeding recommends against their use during the third trimester. Sulfasalazine and the anti-TNFs appear to be safe. As for breast-feeding, short-term use of ibuprofen and naproxen seems okay, but the anti-TNFs should be avoided.

As for passing AS to your children, the chance of getting AS increases by a factor of 16 if you have a first-degree relative. A family history of autoimmune disease generally increases your risk.

There were other questions, but I think the answers are generally available. I hope my notes are accurate, but there may be errors in this entry. Consider this a disclaimer: please don't rely on this entry (or this entire site, for that matter) for factual information regarding AS or its treatment. I'm a patient, not a doctor, and I don't always know what I'm talking about.

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