Greg,
I completely relate both to your shock at getting the definitive AS diagnosis and then having to make a decision about starting an anti-TNF. My experience was pretty similar (dx'd on 7/31/08)--I knew something wasn't right but figured that the rheumy would just want to watch and see how my symptoms progressed. I was completely unprepared to hear that I had AS (though my case hasn't progressed to the extent yours has). She was trying to tell me about the anti-TNFs and I was thinking "I have to get out of this room NOW." When I left her office, it was my plan to take the Celebrex she prescribed and stay far away from drs. It took me a few months, and another serious flare (and talking to several family members who have serious cases of AS), to realize that I needed to be more proactive and needed to think seriously about the anti-TNFs. I did a lot of research, which did little to alleviate my concerns. I was terrified to make the conscious decision to expose myself to the risks these drugs involve. But, finally, I took the plunge. I had my first infusion of Remicade two weeks ago, will have my second today. I am already noticing signigicant improvements in both my energy and pain levels. I also know that this is my best chance to keep progression in check. I probably won't ever stop worrying about the long-term side effects, but at this point I am glad I made the decision to start Remicade.
My best wishes to you as you make this difficult decision for yourself. Monnica
