What Does Remission Mean to Me?
Like the experience of living with rheumatoid arthritis, I think remission varies by the person. While I have had a couple of remissions during the course of my disease, how they happened and affected me were different from many other patient experiences.
In the clinical sense, remission is a stop in the active destruction caused by the disease. Inflammation numbers fall into normal range and some symptoms may be alleviated. While I have had my inflammation test fall into normal briefly, I have to admit that I’m not always certain I have experienced true remission.
My experience of remission
When this first happened it was right after my knee and hip replacements as a teenager. But as I had already lived with RA for 15 years and had experienced severe joint damage already, it was hard for me to feel a difference. Additionally, I was struggling to recover my strength and physical abilities following the surgery, so generally felt weak and immobile. This remission did not last long, as within a year I was back on treatments and experiencing active RA symptoms.
After college, I moved and switched to a new rheumatologist who kept me on relatively low doses of NSAIDs because my inflammation levels were low, yet not within normal range. He explained this meant I still had RA, but that we could manage the disease with less treatment. Since I was feeling OK and could manage my life on this treatment plan, I did not argue. Looking back I wonder if I should have found a more aggressive doctor at that time and worked for more progress than getting by with the minimum.
Once again my inflammation levels dipped during the recovery from knee revision surgery a few years ago, but it did not last long—perhaps just a couple months. I did not feel any great change and did not expect it to last. But it did make me think that perhaps major surgeries (like joint replacement) place such a shock to my body that the disease is temporarily knocked out for a period of time. Of course, this is not a practical or long-standing way to induce remission!
Remission or management?
The goal of doctors treating RA now is to generally go as aggressive as possible towards causing a remission through suppressing the immune system. In my case, treatments have never been able to completely quiet my RA. At times, outside mysterious forces have caused brief remissions that I cannot explain.
The major complication that I have with my rheumatoid arthritis is that the severity of my joint damage means that a change in disease activity is difficult to detect. If I feel better, it is only mildly. Unfortunately, if I feel worse it is either gradual or so sudden that it often indicates a flare. Remissions have always been hard for me to experience because I live with permanent joint damage throughout my body.
While I would still love to achieve an RA remission, I know that it will not be life-changing as far as affecting my joints. But it would be helpful to not have active disease progression and to lessen the fight with fatigue. I envision it more as hitting the ‘pause’ button. That it would give me more time at my current physical abilities and strength.
Remission continues to remain a goal, but my daily focus is on management. I take my medicines, do my exercises, and work on keeping RA under control for today. My focus is navigating the illness through the present, yet hoping it will all add up to a future with less active RA.
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