An Experiment

I had a rather interesting visit with my rheumatologist in March. I had two primary objectives.

1 - Get a referral for a CT Scan of my right shoulder (the one that is not replaced yet) so that at my 2 year appointment with my surgeon, the scan would be there and I could happily book the next surgery - soon. Mission: Accomplished.

2 - Talk about Humira and how it may/may not be working for me. Dr. K was not so supportive. He, essentially, was wondering pointing out that I am not flaring, so why change meds. How did I know how much Humira was working for me and how did I know that another drug would work for me? Good points, but no new TNF blocker. Mission: Not Accomplished.

Dr. K. did leave me with an experiment to try. His idea is that I won't really know how much Humira was working until I was off it. So he suggested that I go off of it and see how I felt, as it is fairly fast-acting and I could go right back on it. The idea is not to be off for too long, as it seems (according to research) that it is better for me to be on a given TNF blocker, rather than none at all.

Well, alright then. Let's give it a go. My last injection was March 13th. According to my bi-weekly schedule, I have missed 2 doses. I'm a little sore, but the world is not ending.

I think this comes down to my expectations. I expected to feel like a rock star on a new TNF blocker. I expected to feel normal. Or more normal. Or better. Instead, it was a hole lot of meh. Granted that is better than I am feeling now, but just by a few degrees, not the 90 or 180 I was looking for.

I think the answer here is two parts:

#1 - I need to adjust my expectations. I am still clinging to this vision of "normal". Well, it ain't likely happening. I've had RA for 20 years and normal disappeared somewhere a long time ago.

#2 - I'm going to keep up with my TNF blocker hiatus and see how things go. I'm pretty tough and pretty stubborn. I'd like to find out for myself if Humira was providing a strong impact. I think in the back of my mind, I still think there is a drug that will make a big difference for me. I need to keep up some kind of hope that there may be something out there for me.

Music has woven itself into the fabric of my life again, and there is a song from 2008 that I listened to quite a bit before my shoulder replacement, and it seems to have come back as the chorus resonates with me:

"That-that-that-that-that don't kill me, can only make me stronger"

Kanye had a good point there.