Another Medication Change
About this time a year ago I wrote about how I was changing to a different biologic as my first medication was no longer working as well. I had had a good run with my first biologic for a couple years, but the effectiveness had dwindled so it was time to try something else.
Unfortunately, the second biologic never did as well as the first. My inflammation was consistently higher and I was feeling worse most of the year. I went through periods of relying on prednisone to get by, which was not ideal nor practical for long-term disease management.
I’m sure it didn’t help that I had a busy and sometimes stressful year! It was good—a big trip to Alaska and moving into our own home, plus work and regular life—but still stressful! No matter the type (good or bad), stress can take a serious toll on rheumatoid arthritis.
For many months, I knew that I wasn’t doing as well. I spoke with my doctor at several appointments, but kept waiting. First, I was hoping that the medication’s effectiveness might improve, especially after reducing my stress. I also wanted to make sure I gave the medication a good try and not discount it too soon. And it’s not easy to make a switch, between processing with insurance and the down time between off boarding and on boarding a drug. Plus, there is the worry—will it help? Will it be better or worse?
Finally, as I felt winter approaching, I felt that it was time. I would have some down time for making the switch and taking some extra rest. My doctor suggested a medication, which we researched heavily, then he submitted the prescription and we worked on the processing, approval, and delivery.
I’m now in that limbo phase of having been off the old medication a few weeks and on the new medication a few weeks. It’s not working yet because it’s too soon, yet I’m pretty achy and uncomfortable without my old treatment. I’m trying to take it easy with extra rest, heating blankets and pads, and extra prednisone. Sometimes I feel like I should turnaround and go back! But I need to persevere through this transition in the hope that the new treatment will do a bit better and keep me healthier.
During my discussions with the doctor, he said: “you know, people do change drugs.” I think he wanted to reassure me because I seemed hesitant. People do change treatments, many more frequently than me. They have good reasons and it often helps. But my case is unique in that I’m not used to having medication options. For so much of my life with RA, treatments were few and not very effective. So much choice makes it difficult for me to choose! And I have a fear of being hasty, of not giving a treatment a good enough try to see if it will work. It may be silly, but it weighs on me.
Additionally, what the medications can do for me is fairly limited because I have nearly 40 years of severe joint damage and disabilities. Unfortunately, the medication cannot reverse the damage only slow the disease. And the effect I feel will not be huge, but will hopefully help me manage for the long term.
So, my expectations of treatment are pretty different and limited, while my fear of switching to a less effective treatment is pretty pronounced. It’s tough that the process really is trial and error. It’s a wait and see game. But I’m here playing and will continue to roll the dice!
On a scale of 1(low) to 5(high), how difficult is it for you to talk about having RA?