When the RD Meds Work--Sort of
Back in November of last year I started a new biologic drug to treat my rheumatoid disease. Having had two other biologics fail me utterly during the previous 12 months, I tried not to be too hopeful about new one. Being let down hurts too much!
After taking the new medication in two six-hour-long infusions, separated by two weeks, I waited through the holidays to start feeling wonderful. I didn’t, but as Christmas faded into the New Year and January got a good foothold, I did start feeling a little better overall. The change was subtle, but noticeable. My hands remained twingy, but not astwingy. I found myself rising each morning with a little more energy and verve. I was still stiff and sore, but slightly lessso.
As the month progressed, so did that odd--to me--feeling of overall wellness. Cautiously, in my mind I was doing my happy dance. Could it be? It was working!
And then, one morning near January’s end, I woke up with really painful knuckles in my right hand and sharp, insistent bursitis pain in my right hip. My disappointment was almost overwhelming.I knew I shouldn’t have gotten so excited about it, I thought morosely. Back to the drawing board.
But later in the day, the pain faded away again. And that’s how it’s gone since then. Mostly, I’m feeling better, with short, twingy moments and hours here and there when a knee or a hip or a shoulder aches for awhile before going back to normal. Before November, my hands ached almost continuously, day and night. I lived in compression gloves and frequently wore wrist braces. My feet were tender, making standing for any length of time painful and walking any distance an exercise in determination.
So the small changes I’ve experienced over the last month make me feel cautiously pleased, but I’m still afraid to get too cocky because we all know how that goes when you you have rheumatoid disease. And yet--and yet--last week I took a yoga class for the first time in my life. I was terribly stiff and inflexible, but I expected that. But I did it, and it didn’t hurt much. Not during the class, and not during the days that followed. I actually enjoyed it!
Just let me whisper this, looking over my shoulder for my rheuma-dragon: my fingers are crossed that this positive change continues.
We get caught up in the hype surrounding the biologics, those miracle drugs their developers intimate will give us our lives back. No more pain! No more debilitating fatigue! No more joint deformities! We watch the commercials for these drugs on TV with scepticism even as we hope that maybe, just maybe, they’ll work for us like they did that pretty young woman who’s playing a gentle game of soccer with her husband and little boy, or like they did for that nice man who built his small daughter a beautiful dollhouse.
The reality? Sometimes these drugs work, sometimes they don’t. No one knows why. Some people take one of the biologics--and there are quite a few of them now--and it works within days to relieve their symptoms. Someone else takes the same drug for six months, hoping with each new, injected dose that this time it will work--but it never does. They try another drug. Maybe it works, fast or slow, or maybe it doesn’t.
The fact is that just as rheumatoid disease affects each individual differently, so do these drugs. The first two biologics I took had absolutely no effect on my RD, and I gave each of them a six-month trial. A year later I was feeling worse, not better. Although it’s my nature to be cheerful and optimistic, I was losing hope and fearing that my disease would get even worse. What then?
The drug I’m taking now works on a different aspect of the immune system from the first two. I’m still taking the three traditional DMARDs (disease modifying anti-rheumatic drugs) I’ve been taking for several years now, as well. I have more energy than I did before. That could be because, with diminished pain, I’m sleeping better. I haven’t had any labs done yet, so I’m not sure what they’ll show, but like many people with RD, my labs generally look fairly good even when I’m feeling like warmed over road-kill.
There are risky side-effects associated with biologics, the most common being increased susceptibility to serious infection. But when I weigh them against the chance of living my life with less pain, more enthusiasm, and more joy, they’re worth it.
Have you taken a drug for rheumatoid disease that worked? How did it affect your daily life? I’d love to hear from you.
On a scale of 1(low) to 5(high), how difficult is it for you to talk about having RA?