In Search of the Perfect Biologic
When I was diagnosed with rheumatoid arthritis in 2000, biologic drugs were the new frontier of treatment. After trying Vioxx (which was later taken off the market due to increased risk of cardiovascular issues that could result in heart attacks), Methotrexate, and several rounds of prednisone, my doctor decided to put me on Enbrel, which was the only biologic available at the time. I was grateful this treatment option was available, although as a college student I wouldn’t have been able to afford the $200 copay that came with this expensive new drug had I not been fortunate enough to have financial assistance from my parents. In those early days of Enbrel, even if you could afford the medication, you weren’t guaranteed to receive it, as there was a period of time when the demand for the drug was greater than the supply, and while the pharmaceutical company was constructing an additional factory to keep up with the supply, there was a shortage. Being aware of all of these factors, I considered myself extremely lucky to be able to take the medicine.
Enbrel was an amazing drug for me. It took a few weeks for the benefits to kick in, and once they did I noticed a huge difference. I was so grateful to go off of prednisone, and to return to the active and productive life I had been leading before being taken down by the flare that led to my diagnosis. Enbrel allowed me to take a full load of college courses while working part-time, to complete a masters degree, and to eventually have a busy career. For seven years it was hugely beneficial for me, and then, all of a sudden, it wasn’t. The effectiveness wore off. Prednisone helped, but as soon as I finished a dose pack the symptoms would ramp back up. After a few rounds of prednisone, my rheumatologist said it was time to switch medications.
At that point, Humira, Remicade, and a brand new drug called Orencia were the biologic options on the table. I ended up going on Orencia, which at the time was only available intravenously. This medication also helped, although with more side effects than I’d initially experienced with Enbrel. I also didn’t like having to miss half a day of work every month in order to get my infusions, but that was certainly preferable to the severe symptoms I’d suffered during the months when the Enbrel was no longer working.
I was on Orencia for about a year before taking a four-year hiatus from prescription drugs in order to get pregnant and breastfeed my two children. After I weaned the youngest, I was ready to get back on medicinal treatment. I have people in my life who are wary of the meds I take, and who suggested that I should consider continue without them, since I’d been getting by. While it is true that I was able to tolerate my symptoms without prescription medicine (save for the occasional dose pack of methylprednisolone that I did have to take during both pregnancies), and while I too wonder about the potential harmful effects of the drugs I’m on, I would like both my pain level and my risk for joint deterioration to be as low as possible. Therefore, I did not hesitate going back on meds.
Yet, making the decision of whether to be on meds at all proved far easier than the ensuing decisions of which meds to be on. My doctor and I determined the first would be Xeljanz. I loved the idea of a biologic that came in the form of a pill, and my sister, who also has RA, has found that it helps her. Unfortunately, after a few months on the medication I noticed no improvement. Next on the slate was Humira. I hadn’t given myself an injection in the five years since I’d been off of Enbrel, so I had to reacquaint myself with that process. Self-administering shots turned out to be much like riding a bike in terms of it being something you don’t forget how to do, although it’s more like riding a really uncomfortable bike that is missing the seat and has low air in its tires. While the injections once again became routine, the medication didn’t have the desired effects, so I stopped the Humira and switched to the subcutaneous Orencia injections that were developed during the years I was off of prescription drugs. I was thrilled that I could give myself shots in my home rather than go to an infusion center, and hoped this form of the medication would help me as much as the infusions had.
So far the Orencia is helping, but it’s certainly not a miracle drug for me. My doctor has recently put me back on Methotrexate, which I haven’t taken in over 10 years. He says that studies show Orencia to be far more effective when taken with Methotrexate than when taken alone. I’m trying to be patient with the side effects, and am hoping that this will be the “right” treatment for me. I’m also holding out hope that as there continue to be new medications added to the host of options available, there will eventually be a biologic that’s perfect for me.
Have you managed RA fatigue better than you used to?