The Waiting Game
Living with rheumatoid arthritis often means spending a lot of time waiting. This can begin even before diagnosis, as there are frequently long waiting periods for new patient appointments with a rheumatologist. As there is a national shortage of rheumatologists1, it is not uncommon to have to wait six months for a first appointment. The shortage of rheumatology specialists may also contribute to the wait time patients often encounter once arriving for appointments. My current rheumatologist and his staff run their office very efficiently, but when going to see my former doctor it was not at all uncommon to wait an hour or more to be seen.
Even when finally seeing a rheumatologist, the treatment process still requires patience. Aside from corticosteroids such as prednisone, which generally begin to work quickly, most drugs used to treat rheumatoid arthritis require extended use before their effects are felt. The time it takes for an RA prescription to reach full efficacy can range anywhere from a few weeks to six months. When one is suffering from the pain, inflammation, and fatigue of rheumatoid arthritis, six months can feel like a lifetime. While other drugs such as prednisone can be used to treat symptoms during the wait time, there are many common and unpleasant side effects of corticosteroids that present a definite downside to using them for extended periods of time.
Even though I’ve been diagnosed with RA for 15 years and have found a good rheumatologist with an efficient office, I still run into long wait times. For instance, over the years as my disease activity has ebbed and flowed, adjustments have been made to my treatment plan. I’ve played the waiting game while hoping a new medication will kick in soon. Furthermore, after seven years on Enbrel it lost its effectiveness, I had to wait for it to get out of my system before my doctor would start me on a new medication. When I decided to start a family, my rheumatologist wanted me to wait three months after stopping my meds before she would consider it safe for me to get pregnant. Then I had to wait until I weaned my children before I could resume treatment.
Rheumatoid arthritis often changes timelines. In addition to waiting for appointments and waiting for medications, there’s also waiting on disease activity to wane. There have been a number of times when I’ve had to postpone plans or projects due to flares. As RA flares are unpredictable, one never knows exactly how long a flare is going to last, making the wait agonizing both in terms of the pain experienced and because it’s impossible to know when one’s life will go back to “normal” (each RA patient’s “normal” is so different that I feel that word can’t be written without quotation marks). Having a flare feels like having to push “pause” on one’s life while the rest of the world plays on.
I’m currently playing another round of the waiting game. I recently had two serious back-to-back infections, which necessitated stopping most of my RA treatment. It took 50 days of antibiotics and over three weeks of prednisone to get over the infections. My rheumatologist said I could resume taking Arava, but that I need to be off of antibiotics and infection-free for a month before he’ll clear me to resume Orencia infusions. I was crestfallen when he told me this, as it means waiting three months between infusions, when standard treatment is every four weeks. At that appointment, I was still on prednisone for the infection, so it was keeping my symptoms at bay. However, I’ve since completed the course of steroids, and now I’m starting to feel RA ramping back up. He instructed me to come back in if I flare, and I’ll certainly do so, but it would be so much easier if I just didn’t have to play the waiting game in the first place.
On a scale of 1(low) to 5(high), how difficult is it for you to talk about having RA?