The Big R
I do. It’s my holy grail; my buried treasure; my jinni’s lamp; and my fondest wish. According to the American College of Rheumatologists and their European colleagues, the European League Against Rheumatism, as of March 2011 “remission” in rheumatoid disease (arthritis) even has a fairly concrete definition (at least as it’s applied to clinical trials) for it. These two august bodies state that your RD is in remission if:
- you have one or less tender joints;
- you have one or less swollen joints;
- your C-reactive protein (CRP) level is 1mg/L or less;
- you assess your pain at one or less on a 10-point scale.
So even the experts agree that it really can happen. I’m living proof: one of those rare but lucky RD patients whose disease did go into remission.
I received my diagnosis of rheumatoid disease in late 1987. I lived with terrible, frequent flares of pain that was often severe enough to disable me for about 10 years. I took a variety of drugs in an effort to treat my RD, but none of them had even the slightest effect. The only ones that did were narcotic pain relievers, and I practically had to beg for those.
So, after six years I stopped taking everything but the opioids (when I could get them). Once in a while I’d take the over-the-counter version of naproxen, a non-steroid-anti-inflammatory drug (NSAID), but I can’t say it ever helped. By then, I had no faith in drugs for rheumatoid disease. And, I was afraid of their possible side-effects, which ranged from mild stomach issues to death. Why should I risk taking these things if they didn’t work on my RD?
I’d pretty much resigned myself to living the rest of my life in pain. Somehow, I told myself, I’d manage. And then, slowly, during the last two of my first 10 years with RD, my flares became less frequent. They were often less painful, as well, and they didn’t last as long as they once had.
One day, it hit me that I hadn’t had a flare--mild or severe--in months. I was cautiously pleased, but afraid to think too hard about it in case I jinxed it. I waited, lived my life, worked, played, and gardened. A whole year went by with nothing but an occasional, mild twinge.
My disease had somehow gone into spontaneous remission.
Now, I don’t know if I’d have met ACR/EULAR’s remission standards at the time. Certainly, I hadn’t had a blood test to measure anything, let alone my CRP levels, in several years. What I know for sure is that I had (with the rare, mild exception) less than one tender or swollen joints at any given time. And if someone had asked me to rate my pain, I’d have told them zero.
Zero! To say I was happy would be wildly understating it. I was--and I mean this sincerely--deeply grateful the unutterably precious gift I’d received, out of the blue, from the Universe. It was a joy to be able to once again live each day without pain or disability. I was very aware of my amazing luck and very, very thankful for the reprieve.
But I also couldn’t quite believe it. Rheumatoid disease is incurable. Was it still inside me somewhere, damaging my body without causing any symptoms? I hoped not, of course, but I wasn’t about to go to a doctor to try to find out. Did I mention that I had absolutely no faith left in the medical/pharmaceutical professions?
My lovely remission lasted and lasted. Years passed. And then, one morning in my fourth, symptom-free year, my left shoulder flared suddenly. It was severely painful and disabling, and I was at work.
Fortunately, I knew a chiropractor, who gave me a short, unscheduled ultrasound treatment, giving up his own lunch hour to do it. I’d never heard of using ultrasound for this purpose (I thought it was just for imaging unborn babies in utero). To my surprise (and immense relief) the ultrasound relieved some of the pain and recovered about 40 percent of my range of motion in that shoulder. By the next morning, my shoulder was back to normal.
That sudden, vicious flare spooked me, but there were no more. I relaxed. I enjoyed and appreciated being normal and pain-free for another year. And then one nice spring morning, as I stretched my right pinky up to hit the zero key on my computer keyboard at work, it gave a sharp, vicious little twinge. I glanced down, surprised, and saw that I had a long, thick lump that stretched along the top and outside of my wrist to four inches up my forearm. Hard as bone, and painless, it was a literal jaw-dropper.
My primary care provider, baffled, referred me to an orthopedic surgeon. He identified the lump as a synovial pannus—a blob of inflamed, greatly thickened synovial fluid that had escaped the synovial capsule and spread out through the tissues surrounding the joint. My RA hadn’t been sleeping, after all. If I left it alone, the orthopedic surgeon told me, the pannus would eventually erode the bones, and I’d lose function in that hand.
As a writer, journalist, and artist, my right hand was (and still is) my life. My livelihood. There was no question of “leaving it alone.”
A few weeks later the surgeon removed the pannus, leaving me with a wrist and hand that, once healed up, worked as well as they ever had. And now, I have a five-inch-long, lightning-bolt-shaped scar to remind me what RD can do when it wants to--even when it’s in “remission.”
And, in the months and years that followed, the active disease returned, just as slowly as it had gone away. I still didn’t have any hope that a doctor or drugs could do anything about the disease, though. It took me three more years--and a lot of Internet research on rheumatoid disease--before I finally broke down and made an appointment with a rheumatologist. He lost no time putting me on a formidable cocktail of disease-modifying anti-rheumatic drugs (DMARDs).
I believe I’m lucky. My RD returned, but it was a changed beast. Today, instead of frequent, devastatingly painful, disabling flares that come on suddenly like I once had, my disease is in a constant state of moderate flare. Now and then, its intensity ramps up to the severe level, but usually it doesn't last long. Instead of attacking my large and small joints, like it once did, it mostly chews on my wrists and hands, and increasingly, on my ankles and feet.
My main point: it may still be rare, but remission in rheumatoid disease is not only possible, it actually happens. How long it lasts varies from person to person, but it can be years.
My other point? RD also returns from remission.
I believe that with the powerful biologic DMARDs available now, coupled with the far more aggressive, early approach to treatment most rheumatologists are taking, remission will become more frequent and perhaps, last longer. One day it’ll be the rule, rather than the exception for all of us.
Oh, how I’d love to hold that grail in my pain-free hands again!
Have you managed RA fatigue better than you used to?