I’m pretty sure the answer is “no,” at least in the way I understand remission. But these days, I am questioning my understanding of remission. This is definitely a case in which I’d like to get input from you, my readers who also have chronic illnesses.
I don’t think that I am experiencing a “true” remission. I am still very much dependent on many different medications to keep me working. We actually increased my Remicade a month and a half ago (seven vials – yowee!), so I’m definitely not anywhere close to drug-free remission. That may not be a realistic goal for me, although it sure would be lovely.
But am I in drug-induced remission? This is what I’m trying to figure out. If I am, it’s not like I thought it would be. My idea of remission was one of two things: either I would go back to feeling the way I did before I got RA, or I would feel great, like I do when I’m on high doses of prednisone. Since I’ve had very little permanent joint damage, those ideas didn’t seem that unrealistic. But that’s not what I’m experiencing.
Here’s how I am: my bloodwork looks great. My joints look great. I haven’t needed a cane in ages, and I’m beginning to feel that I might not need my disabled parking permit anymore either. I haven’t had a flare that truly knocked me down in awhile now. I have tapered completely off prednisone and didn’t go into a flare when it was done. Little by little, I am regaining my ability to do things I couldn’t do before. I think I really am getting better, but so slowly it’s been hard to notice. And I didn’t think it would be like that. I thought that once we reached the right medication combination or dosage, I would see an instant, dramatic improvement.
I don’t really know what’s going on. I still have fatigue, and I still wake up stiff and take awhile to get moving. Also, I had a stressful day yesterday, and had what sure seemed like a stress-induced flare today. Very interesting, since I have never had one – it’s usually doing too much or getting too little sleep that make me flare (or, sometimes, just randomness). It was a mini-flare, nothing like the flares I’ve had before, but I felt awful this morning, took a long time to get moving, and my left knee is very sore. Doesn’t being in remission mean that you don’t get flares?
I am seeing my rheumatologist tomorrow, and am interested to see what he has to say about this. I still think a lot of my fatigue and achiness come not from the RA being active, but rather from the after-effects of the RA having been active for so long. I am still about twenty pounds overweight, and my muscles have tightened and atrophied over time from disuse. I am still recovering from adrenal insufficiency. I also have a few other conditions that have been acting up, like asthma and interstitial cystitis. Am I feeling mildly crummy because of them, and not because of RA? Sometimes I forget that there are other reasons besides RA for feeling bad.
I don’t want to go swimming in that river in Egypt, and I feel that I’m in some danger of doing just that. But I also don’t want to live life like I’m sicker than I really am right now.
Your thoughts? What does “remission” look like?