Remission is the Holy Grail of rheumatoid disease. We all hope for it, seek it and long for it. As we cope day by day and moment by moment with joint stiffness and sometimes terrible pain; with miserable, low-grade fevers and that soul-deadening flu-like malaise; and with fatigue that makes even the simplest chore seem like it’ll take Herculean effort, the hope of remission whispers enticingly in the back of our minds.
And why not? Why not hope that this awful disease will just … go away?
Of course, that’s not exactly what doctors mean when they talk about remission in rheumatoid disease. To them, remission means an absence of disease activity that is measurable in time not lost to morning stiffness, a painless joint count, lack of fevers, malaise, and fatigue, and a surfeit of other signs of disease activity, like raised sedimentation rates and CRP levels in the blood.
And remission means different things to different patients, too. For some, remission means that the disease’s symptoms are mild or mostly silent. To others, it’s the absence of serious pain.
I’ve experienced remission. For me, it was—finally—the complete absence of joint pain, first and foremost, and of the other symptoms as well.
My remission occurred about 10 years after my initial diagnosis—a decade of truly miserable, often agonizing, frequently disabling joint pain. During the first six of those years, my doctor prescribed several non-steroidal anti-inflammatory drugs (NSAIDs) and at least two DMARDS (disease modifying anti-rheumatic drugs), including oral gold. None of them had the slightest effect on my disease.
Frustrated, I finally stopped talking everything except over-the-counter pain relievers and, rarely, when the pain was simply too horrible, opioid analgesics. I knew I should see a real rheumatologist (my previous doctor was an internist with the Department of Defense and the closest thing to a rheumy available). But I had no faith left.
The disease was what it was, I thought. It was incurable. There was nothing “they” could do.
As the last four years of that first decade passed my flares grew less frequent and, slowly, less painful. The periods between flares—never more than a week in the early years, and usually no more than a couple of days—lengthened to weeks. Flares lasted two days instead of five. I was afraid to think about it too much for fear of jinxing the whole thing. I just lived. I worked at my job as a journalist with a small-town paper. I raised my daughter.
And then one day, as I was out tramping around in the back country of the California foothills getting photos of firefighters at work and helicopters dropping retardant during a wildfire, I realized that I didn’t hurt. More than that — nothing had hurt for… well… months! This wasn’t the first assignment I’d done that required me to get physical, either. I’d covered the kayak races on the American River, hoofing it to the remote area where the big rapids were. I’d even done a 10-mile hike with pack-llamas.
And my normal, day-to-day activities weren’t hurting anymore, either. I could stand in long lines at the grocery store without shifting from foot to sore foot like a little kid who needed the bathroom. I never had trouble typing, or cooking, or folding laundry because of flared hands. I drove a manual transmission easily, never worrying about my left foot suddenly flaring and turning the act of shifting gears into one of torture.
Simply put, I had no more rheumatoid disease joint pain. And the other symptoms, which in me have always taken a backseat to that joint pain, had gone without a trace, too.
I didn’t think about my miraculous remission much. I wondered what might have caused it, of course, just like I’d wondered what caused me to get RD in the first place. My circumstances had changed a lot—I was back in the States after several years in Germany—and I was newly re-married. My surroundings were totally different, as was the weather. I’d gone from a cold, wet climate to a hot, dry one practically overnight. But the remission hadn’t happened that fast. It had taken several years.
Time passed. At first, I was wary. I worried about doing anything that might “trigger” a flare. But I knew that I’d never been able to identify any one thing that triggered my pain. It just happened—or it didn’t. So, after a while, I stopped thinking about that, too. I kept doing the job I loved. I got a promotion from reporter to special sections editor too, finally, managing editor of a sister paper in a neighboring community. I continued reporting, too, even though I had a tiny staff. I chased wildfires. I reported vehicle accidents. I put together a 45-to-60-page tabloid paper every week, editing stories, gathering tons of info, taking and editing photos, and then working production, dummying galleys, and paginating. I worked 60+ hours each week. The stress was incredible. I loved every minute.
On the weekends, I gardened and did housework and grocery shopped and went fishing and hiking and played. Nothing slowed me down except exhaustion.
And although my RD seemed well and truly “in remission,” I never forgot how bad it had once been.
How much it had limited me. How completely that terrible pain in my knees/hips/feet/shoulders/hands/elbows/jaws had flattened me, or how often.
I was incredibly grateful for the reprieve from pain and other symptoms. I didn’t know how long it would last, but I told myself I didn’t care. That it had happened at all was such an incredible gift.
My remission lasted for roughly six years. When the disease became active again, it did so quietly, showing up first as a sudden, large lumpy pannus in my right wrist. There was little pain, but it was quite clear what was going on. Removing that hardening pannus to keep it from impairing my wrist and hand was the first—and so far, the only—surgery I’ve had for my RD.
After that, the joint pain returned, little by little. It was mostly in my hands and wrists, to start, and then showed up in my feet once again. It was mild, compared to the early years, but this time, I made an appointment with a rheumatologist. I’d been reading. I knew there were new and more effective medications available to treat the disease now. I hoped to catch the dragon, de-fang and de-claw him before he could start causing serious damage.
That was, incredibly, almost 12 years ago. Although I live with near-constant joint pain in my hands and feet—sometimes severe—I only rarely have pain in my larger joints. I don’t have any deformities, and it only occasionally disables me. The other disease symptoms are still, for some reason, mild for me. So, I’m still so grateful. My wish is that barring another miraculous, total remission, my RD—my dragon—will stay just like this.
And finally, I do like to tell this story. Remission is our Holy Grail. Well, I’m here as proof that it exists, and that there’s always a reason to keep trying, to stay strong, and to hope.
On a scale of 1(low) to 5(high), how difficult is it for you to talk about having RA?