What Does 'Remission' Mean to Me?
Does remission apply to autoimmune diseases?
The definition of remission is “a temporary or permanent decrease or subsidence of manifestations of a disease”.
No symptoms? No need for meds? It sounds like something I’ll never achieve, a pipe dream, if you will. I am on medications, I have the symptoms and my condition dictates my everyday life.
I can’t be in remission, especially when I think of the textbook definition. It sounds pretty concrete. For example, you have cancer or you don’t and if you don’t have it then you’re in remission, right?
But, I have learned that autoimmune conditions are not text-book because sometimes the hard facts show disease activity while clinical symptoms are low or vice versa. Or, the symptoms don’t truly line up with any one rheumatic disease!
Re-evaluating RA remission
I’ve had to re-evaluate my definition of sick and along with it, remission. It may not mean a total absence of the disease. It might mean I’m managing my condition well enough I don’t think about it all. the. time. Maybe it means I am just on maintenance drugs and the symptoms are on the back-burner and not full frontal all. the. time.
If I was thinking about remission in those terms, maybe I was in it…for a short period of time.
How do I know? I certainly had the symptoms and the medications to prove them. It wasn’t just about management. I am happy to say, my condition has been well-managed for a couple of years now. There was something different about this last year; small things, sure, but they added up to something huge: possible remission!
First, my steroid use. I have been on Prednisone since my diagnosis nine years ago. I’ve taken as high as 20mg during flares and as low as 8 for maintenance. 8 is great, 8 is beautiful but it’s not low enough. I tried, fruitlessly, for years to lower to 7mg but it was like I hit a brick wall. Each time I went down that measly 1mg my body revolted and I ended up in a total chaotic flare.
Things changed last Fall when one day it just clicked. My body tolerated the 7mg. I alternated 7 and 8mg (please always check with your doctor to make sure this is a possible option for you) and nothing happened. I pressed my luck and took 7mg multiple days in a row and I felt the same!
I did it! And, I didn’t have to increase my pain medications to compensate. I was plain old stable on a lower steroid dose.
And, then, there was one thing that really struck me. My fatigue was GONE. G-O-N-E, gone! I wasn’t tired! Fatigue has become my best friend since my RD flared and because of it I slept through my 20s. Life without this constant lethargy was a) unfamiliar and b) very noticeable! I wasn’t napping during the day and I was sleeping okay at night (read: better than usual). I didn’t have mounds of extra energy but I was getting through a day without wanting to curl up in a ball on the floor.
I know it really doesn’t sound like remission since I was still on the Methotrexate and on the pain medication; I still saw my rheumatologist regularly but it didn’t feel like the Rheumatoid Disease was dictating my life. For a spell, I rarely thought about it and for me, that sounds like the closest to “absence” as I’m ever going to get.
What do you think? Did I experience remission or just a good, well-managed period. I want to hear your opinion!
On a scale of 1(low) to 5(high), how difficult is it for you to talk about having RA?