Existing radiographs (n = 2284) of 571 AS patients attending the Royal National Hospital for Rheumatic Diseases were scored retrospectively using the Bath Ankylosing Spondylitis Radiology Index.
- Progression of disease was initially examined cross sectionally. Factors associated with joint involvement were examined.
- Progression of disease was then examined longitudinally for patients with films at time of symptom onset.
- Rate of progression of radiological change was calculated using longitudinal data of 2 sets of radiographs taken 10 years apart (patient number = 54). The results from this were used to extrapolate backwards to age at first radiological change.
The results of the study demonstrated the following:
- Progression to cervical spine disease was a function of: disease duration, severity of hip and lumbar involvement, and a history of iritis. Lumbar (lower back) involvement was associated with disease duration, age now, and severity of cervical and hip involvement. Hip involvement was a marker for cervical disease and associated with disease duration.
- Longitudinal analysis revealed marked variation among patients with a slow general rate of progression.
- The progression of AS over any 10 year period is linear [first 10 years = 30% (SD 0.3) of potential change, 10-20 yrs = 40% (SD 0.3) change, 20-30 yrs = 35% (SD 0.4) change (p = 0.5)]. Backward extrapolation suggests that the approximate time of first radiological change is at the age of 8 years.
The researchers concluded the following:
- AS is a linearly progressive disease with about 35% change every 10 years. Spinal involvement is largely an expression of disease duration while the hips become involved in about 25% of individuals and may predict a more severe outcome for the cervical spine.
- Backward extrapolation shows that the disease process may start as young as 8 years of age. However, the time interval between the disease trigger and radiological change remains unknown.
Authors: Sinead Brophy, Kirsten MacKay, Ahmed Al-Saidi, Gordon Taylor, and Andrei Calin
Source: J Rheumatol 2002;29:1236-43
Hi Cassandra,
ReplyDeleteThought I would share my story.
Im 34, and live in the US. I am a physician and have been in athletics all my life. I was diagnosed with AS a few months ago.
My story goes like this:
When I was 20ish, I recall having a sore tail bone for over a year. Thought it was due to sitting on wooden seats at the university. It faded away on its own.
When I was 24 and in medical school, I very suddenly became terribly, and chronically fatigued. I almost dropped out of medical school infact. Don't remember back pain, but I recall my limbs felt very heavy all the time, almost stiff. There were times when I would wake up with a stiff chest, or a stiff jaw. After two years, these symptoms faded away too.
Now Im 34, and 4 months ago the night sweats and fatigue hit hard completely out of the blue. A week later my hands and feet stiffened. Then the SI joint and back pain set in. The jaw fatigue is back as well, and any muscle group I use gets fatigued, like tendonitis, or like having completed the hardest workout of my life - only i didnt work out, i just walked up a flight of stairs. My hips and shoulders have gotten stiff too, sometimes painful.
Im 3.5 months into this "flare" and I started enbrel a 4 weeks ago, it does help, but just keeps me functional, certainly no panacea, at least not yet.
Im a doctor, I've read everything I can get my hands on about the disease and it all suggests people feel better with exercise. "Sweet," I thought, "I love to exercise!" I just cant, everything gets worse when I do.
You're an athelete with AS Cassandra, do you have days/weeks/months like this? Like you, Im not myself without exercise.
Thanks,
Hi Josh,
ReplyDeleteIt was a pleasure receiving your email. Thank you for sharing your story with me. After reading about your experiences, the reality of our mutual circumstance raised it's head again, and I've been thinking more about the hidden symptoms we have to endure while putting up a good front of functionality. Suffering in silence is so unfair, so as much as I am saddened to hear that you are afflicted with this terrible disease, it brings me comfort to know that neither of us are alone in that suffering. I welcome you to keep in touch; support is difficult to come by, and has a particular superficiality when it comes from those who lack the gene to truly understand the support we need (despite all good intentions).
Enbrel certainly has helped relieve many of the dysfunctional and frustrating symptoms, like fatigue and night sweats. If I miss a few weeks of Enbrel, as I have been known to do, fatigue and stiff SI joints are usually my initial symptoms. Fatigue gets me emotionally down the most because I foolishly tell myself that it's all mental and can be overcome with some discipline and drive. As a fellow athlete, I would imagine that fatigue plays a psychological toll on you as well, especially given it's affect on motivation and performance. A vicious cycle.
I still have dysfunctional days with terrible mobility; however, the interval between those days has grown longer thanks to Enbrel. Are you taking the 25mg or 50mg dose? Thankfully the night sweats have disappeared. Their presence is always an indicator of an impending flare, which allows me to prepare for it and have a contingency plan for achieving my responsibilities at work. I have no children presently, and I worry how it would affect a person's ability to be involved in raising their child...the playing...the alertness and energy required...the mobility demanded. Do you have any insight in this area? I worry that I would be too tired to be attentive to a child's needs.
Stay strong,
Cassandra