I’m sorry it’s been more than a month since I wrote. It’s been a tough time and I’ve been very sad.
For those of you who were left hanging by my last post, the doctor declared it not remission, but a “near-remission experience.” My bloodwork did look great, and my symptoms were on the whole SO much better, but joint examination showed that there were still just a few joints that were in a state of active inflammation. That’s still great, amazing progress for me, and we were both in a very hopeful place.
Then the flare hit. It began with an IC (interstitial cystitis) flare that wouldn’t get under control and soon triggered a full-on RA flare. Fevers every afternoon, swollen fingers and knees, brain fog, exhaustion, the whole nine yards. It’s far from being the worst flare I’ve ever had – the IC was actually much more difficult and painful to deal with this time around than the RA – but it’s not a good development. Whether I got rundown from the IC or from stress (there’s been a lot of it lately, which I won’t go into) isn’t clear, and maybe isn’t even important. The point is that I’m back in a bad place now. I’m also back on prednisone, which I worked so hard to eliminate. This really broke my heart, especially since it’s not a good step in the battle against adrenal insufficiency, which I was winning beautifully. On the bright side, the adrenal problem was really caused by long-term daily pred usage. Since this is intended to be a short-term pred taper, and since my adrenals have recovered almost completely, it’s not likely that it will trigger the same problem again so quickly.
My Remicade infusion is on Thursday, and I hope it will quiet this down. I also had labwork done on Friday, so we’ll see if it shows anything new, and talk about medication changes if it does. In the meantime, I guess all I can really do is hang on. I’ve been here before, and I can do it. I’m just disappointed.