A Hopeful Guinea Pig
An ordinary doctor at university student health was the first person to tell me that I had rheumatoid arthritis. I don’t remember her explaining what it was or what it meant, but I do remember that she sounded serious and sad. Since student health was also a teaching facility, she asked if it would be ok for one of her students to come in and feel the RA flaring in my hands. I told her that didn’t bother me. I don’t think I really understood at the time that my life would be forever altered from that point forward. I just remember feeling grateful to finally have a diagnosis. The doctor said it was treatable, so I knew it would only be a matter of finding the right treatment.
That doctor gave me some prescription-strength nonsteroidal anti-inflammatory drugs (NSAIDs) to help with my pain while I waited to be referred to a specialist. A week or so later I met my rheumatologist and he confirmed the diagnosis of rheumatoid arthritis. He gave me some more information about my condition, and it started to sink in that the disease was more serious than I had originally understood. The first type of medication he offered me was prednisone, a corticosteroid drug that he said would work towards getting my pain and inflammation under control.
But, while the prednisone did help me feel somewhat better, it wasn’t nearly enough to get me feeling better and functioning in my everyday life. So the next time I saw my rheumatologist he introduced me to disease-modifying antirheumatic drugs (DMARDs). These medications, he said, would work to alter the course of my disease instead of just treating the symptoms. That sounded promising.
The DMARD my rheumatologist chose was methotrexate, and it was in learning about this medication that I began to really understand the seriousness of my condition. Methotexate, a drug also used to treat cancer and end ectopic pregnancies, came with a host of possible risks and unpleasant side effects. But we decided to try it. I waited as patiently as possible for several months, hoping the methotrexate would help me feel better so I could get back to my life.
But it still wasn’t enough. So my rheumatologist decided it was time to move on to using biologic response modifiers, or simply “biologics.” These medications are made up of genetically engineered proteins, which are derived from human genes. Biologics function differently from DMARDs, he explained, because DMARDs treat rheumatoid arthritis by broadly suppressing an overactive immune system. Biologics, on the other hand, are designed to inhibit specific components of the immune system that play pivotal roles in inflammation. We decided that I would start a treatment called Remicade. The medication would be administered by infusion, which meant that I would need to spend two or three hours sitting with an IV.
I was nervous about what the treatment would be like and whether I would experience any side effects, but the first infusion turned out to be surprisingly simple. And the best part was that it seemed to make me feel a little bit better. I settled into a routine of watching movies on my laptop while I sat with the IV in my arm every couple of weeks. But, after about four infusions, I still wasn’t improving as much as my rheumatologist would have liked. And although he increased the dosage for my next two infusions, I started to decline again.
I started to really hate the trial and error process of searching for the right medication. I hated having no choice but to agree to medications with potentially terrible side effects. I hated even more that every time we tried a new drug I had to wait what felt like an eternity to find out if I would even get any of the benefits. I started to feel like some sort of medication guinea pig. I was very discouraged.
One Saturday night I felt particularly hopeless, so my husband decided to take me out to dinner to cheer me up. We were waiting for a table at our favorite Mexican restaurant when I looked up to see an adorable little girl smiling at me over her daddy’s shoulder. When her dad turned around I was surprised to see that it was my rheumatologist. Even though he was out to dinner with his wife and daughter, he took a moment to ask me how I was feeling. I told him honestly that I was not well and almost started to cry. He was extremely supportive and said we would work together to figure out how to make me better.
He called me first thing the next morning and together we decided that Remicade was not the right treatment for me. I told him that giving up on Remicade, after struggling to find the right treatment for more than a year, felt sort of like going back to square one. But he pointed out that at least we could mark a few things off the list at this point. Plus, he said, since I did initially see some improvement there were other drugs in the same category that might turn out to work for me. His confidence and support slowly rekindled the ember of hope inside me. I made an appointment so we could decide what drug to try next. And, even though I still felt like some sort of guinea pig, at least my rheumatologist helped me feel like a hopeful one.
When was your last flare?