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ramonajim · #5 08-01-2008, 02:26 AM

Quote:

Originally Posted by OMEGAMAN

After reading that I feel lucky. I was diagnosed at 21 and still by the grace of god have full range of motion.
How bad an infection do you have to have before you go off Embrel. All my cuts seem to heal pretty normal after a few months on the drug.

Cuts and bruises heal normally - it's only if I get an actual infection that I have to stop the drugs. Sinus infections are my biggest nuisance (triggered by allergies). Enbrel and methotrexate are specifically designed to ratchet back our over active immune systems - since AS (and other related auto immune diseases) cause one's body to attack healthy tissue (in my case, joint linings) when an infection is detected, the idea is to keep them hyperactive white blood cells from going bonkers and chewing up the good bits.

My range of motion is actually pretty good, all things considered. Have lost some side to side in my neck, and some ROM in my lower back due to the AS. Breaking the spine (and the resulting bolting together of T4 through T7) cost me some more motion up between my shoulder blades. But really, the biggest lasting impact of the fractures is that I am now prone to spasms in the big muscles the surgeon had to slice through - again, up between the shoulder blades.

With the TNF drugs I'm on, I can do pretty much anything I want - except carry things out in front of me. That is a sure fire trigger for spasms. My biggest limitations are related to making sure I don't ask my spine to endure any more shock - because of the "bamboo spine" (calcification between vertebrae) I just don't bounce worth a damn. Impacts that would cause other folks disc problems cause me broken vertebrae. So skiing, bungee jumping, skydiving, mountain biking - activities that carry high likelihood of me landing on me head - I avoid.

It's easy for me to stay appreciative of just how good I have it. Any possibility of feeling sorry for myself is whisked away by remembering the story of a woman with AS, about my age, in England. She had it bad - to the point that her chin was pretty much glued to her chest (did you know you can actually buy prism eye glasses just for dealing with this condition?). She underwent surgery during which they removed her head. Nothing left connected except spinal cord and blood vessels. Tipped her head back to a forward looking position, and bolted it in place thusly.

Remembering that story helps keep me disinclined to whine about my little aches and pains.