Here We Go Again
In the 15 years since my diagnosis of rheumatoid arthritis, a lot has changed. At the turn of the 21st century there were two biologic medications on the market; now there are 10. Patients taking prescriptions via subcutaneous injection had to mix powder with liquid and draw the solution into old-fashioned syringes. Nowadays most subcutaneous medications are available in pre-filled auto-injectors. In 2000, many patients receiving infusions had to go to hospitals or hospital-affiliated infusion centers for treatment, whereas now lots of people are administered IV meds in rheumatologists’ offices. It cannot be denied there have been significant medical advances in treating RA during this century.
That being said, there are many things that have not changed. Most importantly, we are still waiting for a cure for RA. When I was diagnosed, I remember reading news articles stating that researchers hoped to develop a cure within 20 years. Now that three-quarters of that time span has passed, I’m wondering if I’ll see a cure during my lifetime, much less in the next five years. In addition, while many more treatment options exist, the nature of the disease hasn’t changed. RA is still erratic, unpredictable, and can really pack a punch on our bodies, leaving us inflamed, in pain, and fatigued.
As I’ve witnessed these changes and continued challenges, I’ve begun to feel as if I’m going in circles. It sometimes seems as if I’ve tried everything, even though there are in fact many medications and alternative treatments that I have yet to attempt. Yet, this sense of RA déjà vu still strikes, most notably with a recent change in my medication regimen. In 2008 I began taking Orencia, a drug that was new at the time and was only available in intravenous form. A year later I went off of all RA medications, with the exception of an occasional Medrol dose pack, in order to get pregnant. For the following four years I remained off my meds while I was pregnant and/or nursing my two children. It wasn’t until I weaned my youngest in 2013 that I went back on medications.
My rheumatologist recommended I try Xeljanz, which was showing promising results for many patients. The memories of years of injections and infusions were still fresh in my mind, making the idea of a biologic medication in pill form sound heavenly. In addition, my sister, who also had RA, had already been on the drug for several months and was having excellent results. I thought if it worked for her, the chances were high that it would work for me. Unfortunately, as the months on Xeljanz continued, I had a difficult time discerning any difference in my disease activity. Therefore my doctor switched me to Humira, returning me to the world of self-injections after five needle-free years. Sigh.
After being on Humira for half a year and finding that it didn’t help me much more than Xeljanz did, my new rheumatologist put me back on Orencia, responding to my self-report that it had helped me years earlier and stating there was no need to “reinvent the wheel.” The good news was that in the years I’d been off of Orencia, an injectable form of the drug had come on the market. It’s far easier to give myself an injection at home than to make a trip to the infusion center, so this was welcome news. I was on Orencia injections for 16 months, and saw significant improvement in my RA symptoms. Yet, the injections couldn’t provide enough relief to counter the increase in stress in my life over the past six months. Therefore my rheumatologist and I recently decided to go back to the exact place where my RA treatment left off seven years ago when I went off drugs to get pregnant: Orencia infusions.
There’s the saying, “If it ain’t broke, don’t fix it.” Yet, what do we do when something as critically important as our immune system is broken, and when it remains broken in spite of years of numerous efforts at fixing it? It’s discouraging to be back where I was seven years ago, with disease activity level severe enough to merit intravenous medication and no new breakthroughs promising enough to lead my rheumatologist to favor them over the drug I was on in 2008. I try to take heart in knowing that researchers continue to develop new treatments, and that these developments might be baby steps toward a cure. However, until a cure or something close to it is created, I’m finding that the answer to that question of “What do we do?” is to keep trying new things, and when something new isn’t available to try, going right back to the option that at least worked better than the rest is all I can do.
On a scale of 1(low) to 5(high), how difficult is it for you to talk about having RA?