Following my overpriced hotel excursion (as I've taken to referring to my recent hospitalization), it was determined that I should begin Remicade. I was given the appropriate paperwork to qualify for treatments from the manufacturer, my wife's employer had agreed I could receive my treatments at their urgent care center, and it was pretty much a given that by the end of this month I would have begun. Then, about two weeks ago I met with my actual GI doctor and had a chance to really discuss treatment options.He agreed with me that I should hold off. Our reasoning is two-fold: 1) The Prednisone and Imuran seem to be working for now and 2) The Prednisone and Imuran seem to be working for now. That's not a typo, in case you're thinking I've mistakenly just repeated myself. No, by that I mean firstly that the steroid/immunosuppressant tag team I've been using has cleared the obstruction that put me in the hospital. More importantly, because they're working now, there's no immediate need to move onto a biologic.
The GI doctor I was assigned while at Norton Suburban Hospital (Dr. Martin Mark) is of the mind that Crohn's patients should pretty much start their treatment by going on a biologic. He's not alone in this mentality; many GIs are favoring the "Top Down" approach, meaning they favor using a bazooka to deal with a fly. I don't mean to disparage a genuine medical philosophy, but it is not one I (or, it turns out, my GI) share. Here's why:
Firstly, there are only four biologics in existence right now (Remicade, Humira, Cimzia and Tisabre). There may not be any more for quite some time, so we must approach any decisions to move on to such treatment as limited to those four for at least the next several years. Cimzia, you may or may not know, was not approved for use in treating Crohn's or colitis patients by the FDA's European counterpart. The FDA, however, did approve it for patients for whom other options have failed. I don't know about you, but I'm not exactly won over by what I've heard and read about Cimzia. As far as I'm concerned, it's not a treatment option that I consider on the table at this point. Should I exhaust everything else, I will naturally revise this doctrine, but for now I consider Cimzia a non-option.
That leaves Remicade, Humira and Tisabre, and I'm not entirely clear how approved Tisabre is at this point. So now I'm left with Remicade and Humira; Remicade is the one that they seem to start everyone on first, because it's cheaper. Now, the thing is that Remicade has a high success rate (80% of patients go into at least some state of remission within a year according to the most recent data I saw). However, there are patients who reject Remicade outright, and up to 20% eventually develop a tolerance to it that renders it useless to them. Once your body no longer responds to Remicade, it never will again.
So, owing to all this, I believe that my GI doctor (Jonathan Goldstein at University of Louisville) and I have reasonably determined that I should not, at this time, begin Remicade treatment. I have to say, I feel more comfortable about not starting it at this point than I felt about the prospect of being on it. I feel that Dr. Goldstein's "Bottom-Up" approach to treatment is more sensible than Dr. Mark's "Top-Down" approach, and I feel it leaves me more usable options to consider later, as needed.I would appreciate (as I always would) hearing about your similar experiences. Does your GI favor a Bottom-Up or Top-Down approach to treating your condition? Which do you find more reasonable? Any other thoughts, questions or suggestions are also welcome.