When the Drugs Don’t Work
A couple weeks ago I had my final Remicade infusion, before I begin infusion treatments of Actemra sometime this month. Having been on Remicade continuously for nearly eight years, the thought of switching to something new is a bit scary and nerve-wrecking. Will it work? Will it work better than Remicade? Will I end up a crippled swollen mess during some point of this transition? Will there be bad side effects? Hopefully everything will go smoothly, of course: my body accepting the drug, no side-effects, less flare-ups, or my RA even going into “remission” (it’s never done this in all of the 17 years I’ve had the disease).
Why switch medications now? Over several months my rheumatologist and I have talked at length about my current treatment and we’re both concerned and unhappy with the fact that I seem to be taking prednisone more often than I’m not, and that’s not good. Our goal is to keep me OFF of steroids, and I invariably keep having to go back on them after only very short periods of time not taking them. The main body part that keeps flaring up whenever I’m off prednisone is my stubborn right foot and ankle (the ankle I’ve had surgery on twice), but I’ve also noticed my wrists and fingers getting somewhat more painful and swollen, too, when this happens. Due to the often complicated, unpredictable nature of RA, it can be extremely difficult to determine just what’s going on and how to best treat it. Sometimes medications become less effective over time, and maybe that’s what’s going on with me right now. But really, who knows? So much of this is a guessing game of trial and error, which is really frightening if you stop to think about it. You’re playing around with serious medications, waiting to see if they will help or harm your already hurting, diseased body.
My personal biologic trial and error “game” began in late 2002-2003 when I started my first biologic drug, Enbrel, and gave myself injections twice a week. I absolutely hated giving myself shots and it was kind of difficult to tell how well the drug was working anyway because I was living and studying in Ireland, and I was kept on a steady low dose of prednisone to help prevent any bad flare-ups while I was living out of the country. When I returned home to the United States, my rheumatologist switched me to Remicade infusions for the next four years.
Happily, Remicade seemed to work very well for me during those four years and I much preferred sitting hooked up to an I.V. at my clinic for three hours every two months instead of anxiously stabbing myself with an intimidating-looking syringe (often incorrectly, causing huge grotesque bruises) in my thighs and stomach twice a week with Enbrel. However, in early 2007 I went back to giving myself injections, but this time with Humira, because I moved to Rouen, France for several months to teach English. My doctor and I decided that injections would be less of a hassle to sort out than trying to arrange getting I.V. infusions while abroad. So once again, I was stabbing myself in the fat of my upper thighs and stomach, although now every two weeks instead of twice a week, which was better. Yet the Humira injections STUNG so painfully I could hardly bear it sometimes, due to the preservatives added to the medication. I returned to Minnesota in the summer of 2007 and asked my rheumatologist to put me back on an I.V. infusion again. This time we tried Orencia, to see if it might work better than the Humira and Remicade before that.
Right now I can’t remember offhand how long I was on Orencia, but both my doctor and I eventually decided that it wasn’t working that great and that I should try Remicade again, since I seemed to do pretty well the first time I was on it.
So, after approximately eight years, that brings me up to today, and the final month of Remicade for who knows how long. While I feel very anxious about “giving it up,” I’m also hopeful that Actemra will work a lot better and will help improve my RA, activity level, and life in general. And most importantly, perhaps, it will help me stay OFF of those evil, wonderful steroids that cause so many problems just by themselves.
The other pain of this situation, of course, is dealing with my insurance company and making sure I can afford to pay for the Actemra. The good news so far is that my insurance did approve I.V. infusions of the drug and they’re not making me “fail” with another drug first. Whew. That’s one big hoop I’ve made it through. The next part though is getting financial assistance through the drug company to help me with my out-of-pocket costs until I’ve reached my deductible and out-of-pocket maximum for 2015. I recently enrolled in their program and I’ve received a pharmacy card that I’m supposed to use to pay for the remaining costs of the drug and treatment. I’ve never used one of these pharmacy cards before so I’m nervous about all of this working out the way it’s supposed to. Over the phone with a program representative, I was told that I’ll only be responsible for $5.00 of the remaining cost of the infusion each month. Really? This seems almost too good to be true. Please cross your fingers for me that it’s not some cruel trick! It’s sad how cynical and skeptical one becomes when dealing with these things, isn’t it?
My final thoughts about changing to a new medication now is that Actemra works in a different way than the TNF-inhibitors I’ve already tried (Enbrel, Humira, Remicade), as well as Orencia (which blocks T-cell activation), so I’m incredibly curious, hopeful, and even excited to see how my body and RA will respond to the treatment. I hope it works well. I really do. I think I’m due for a break from all of this pain for a while, at least!