Wednesday, February 17, 2010

Disjointed

In the middle of October, a system-wide onslaught of joint pain suddenly appeared in my body, creating pseudo-injuries in all of my major joints. Aside from my obvious spinal weaknesses, I have been largely pain-free, and so it was confusing when suddenly my wrists, knees, ankles, and hips all required daily icing. After four months of blood tests, MRIs, and supplemental specialists, I've been handed a new diagnosis: Ankylosing spondylitis.

Ankylosing spondylitis (AS) is a form of spinal arthritis that begins in the sacrum before moving up the spine and into the large joints. It is genetic, auto-immune, and incurable (though not untreatable). This diagnosis explains almost all of my symptoms, including the sheer amount of time it has taken me to get better. It also maps out treatment options, something that "undiagnosed chronic post-operative pain" does not do. My first treatment plan is Enbrel, a relatively new drug that in its ten-year lifespan has already earned a reputation as a miracle cure. Best case scenario, weekly injections reduce all my symptoms to zero and my life goes on.

The catch is that AS is part of a family of diseases called spondioaropathy (which includes such illnesses as IBS, Chrone's, and psoriasis), and Enbrel is a drug created to fight rheumatoid arthritis. While it is extremely effective in combating the inflammatory aspects of AS, it has no effect on the worst case scenario - in extreme cases, the ligaments in the spine calcify and, essentially, the spine fuses itself. This fusion can then move into the larger joints. A drug has not yet been invented to fight this.

But, that's worst case scenario. They caught mine early, and because Enbrel slows down and fights the inflammatory process it is highly unlikely that the fusion process will begin. Or, by the time it does, a drug will have been created which combats this particular part of the disease. Either way, thanks to the remarkable success Enbrel has had in treating arthritic conditions, auto-fusion is not considered a looming possibility in my case.

I started my course of Enbrel a week ago, and so far, I have not felt a drastic effect. I have noticed more good mornings, but they lack continuity and so my confidence is shaky. I'm hoping for a drastic hallelujah moment telling me that the drug has worked, but I don't know what will happen. We shall see. Either way, a diagnosis is gratifying, because after months of shooting in the dark there is a path - and all I have to do is follow.

photo credit: http://www.duluthfishdecoys.com/images/DFD_15_inch_double_jointed_northern.jpg

5 comments:

  1. Glad to hear that they now have an idea as to what is happening to you. I hope it helps!

    -Alex

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  2. My friend Peter Caddy (who founded the Findhorn Foundation in Scotland) had severe ankylosing spondilytis most of his life. He climbed most every major summit in the world and still at age 72, with a fused spine, went back to the foothills of the Himalayas and climbed as high as his new bride could for his last marriage. When we traveled together, he would pull off the road every time he saw a body of water, strip down to his underwear and swim. He led day-long hikes in Marin, this was back in 1985. I am not aware of any medication he took. I did not realize for months that he was constantly in pain, he would never allow it to stop him. I was irked at myself for not being able to reproduce his feat. Now with my back trouble, I've never let it stop me from working, I can't afford to, but weekends find me completely debilitated and in bed and in agony, still occasionally. I can't overcome the pain -- until Monday. My martial arts teacher lamented he could not inflict serious bodily harm or threaten us with death when we'd reach the "I can't" point, and collapse way too early and soon for his taste. We were very grateful for the protection of democracy, but he was right. A life with pain is a complex gift. Would that I could return to sender. So, many miles to grow with it, and very unwilling, still. Joelle

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  3. Julia - I hate to think of you having to endure additional pain. Enbrel may just be the drug to combat it. It certainly sounds promising. We all really appreciate the health update. Can't wait to be hear about your hallelujah moment. By the way,I can't be the first person to comment on what an excellent writer you are. Les

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  4. Thanks Les! Nice to hear from you. Hope you are well.

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  5. Brilliant explanation: not too much, nor too little med-speak to help us get a picture. I am holding the image of you bending and reaching and gently hopping over creeks in the Springtime. You are my hero. Love, AC/DC

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