The Last Days
With a title like “The Last Days” one might wonder if I’m referring to something as monumental as the last days of life or the last days before the apocalypse. No, I’m not talking about something as sinister as mortality or zombies taking over the earth. However, I am talking about something that’s serious to me, the last days before my monthly infusion.
My monthly infusion
I take an IV biologic, Orencia, used to treat rheumatoid arthritis (RA). Once every four weeks I go to the infusion center in my rheumatologist’s office and am hooked up to an IV to receive the medication intravenously. While the needle pokes are not pleasant, for the most part I am grateful for the process. I’m able to receive the infusion in town (in past years I used to drive an hour each way for my infusions), it only takes 30 minutes for the bag to empty into my veins, I have health insurance that covers the medicine, and, most importantly, it effectively decreases my disease activity.
When people hear that I have to get an IV every month, they often think that sounds awful. Obviously having a condition that requires intravenous medication is indeed awful, but it is not the IV that is dreadful. While having a needle inserted into my vein is not my idea of a good time (especially if the nurse can’t get it on the first stick), it’s actually the days right before my infusion that I dread, rather than the infusion itself.
When effects of the medication start wearing off
That’s because this medication, which remains in my body for weeks as it combats my misguided immune system, starts to wear off toward the end of the 28-day period between infusions. Often by day 24 or 25 I feel like I’m starting to flare. Movements that at times are pain-free or mildly uncomfortable become onerous. The puffiness of inflammation becomes visible. The fatigue sets in, acting like a thick cushion of water I must push myself through to accomplish any task.
Therefore, when I’m feeling these symptoms and check the calendar to find that I’m approaching my next IV treatment, I don’t dread it at all. Rather, my overall feeling is, “I just have to make it to infusion day.”
Over the 17 years that I’ve been diagnosed with this disease, I’ve had several loved ones suggest that I go off of RA drugs. They make all kinds of suggestions about the various diets and alternative treatments that might “fix” me, and state their concern about the side effects of the drugs. I too have concerns about the negative impact of RA medications on my body, especially its suppressed ability to fight infections. My brain is ever weighing the pros against the cons. However, I’ve tried several diets and alternative treatments, and so far have not found anything that reduces my symptoms as effectively as Orencia does.
The immunosuppresant tightrope
At my last rheumatologist appointment, we once again discussed the balance of having an immune system that is weak enough to stop attacking my body but strong enough to fight infection. As he considered whether to alter my medication regimen, he asked if I notice an increase of symptoms before my infusions. When I said I did, he asked how many days before my infusions do I notice the symptoms and whether this happens every month. When I replied that most months I start seeing an increase in symptoms three to four days before my infusion, he said that made him nervous to change my regimen.
A couple of weeks later I was in the thick of those “last days” before the infusion, and I had to agree that I am not ready to change something that is working. This immunosuppressant certainly comes with complications, but these remain outweighed by the positive impact Orencia has on my disease activity. Those last days before each infusion serve to remind me how I will feel without the medication, and how grateful I am that it’s an option.
On a scale of 1(low) to 5(high), how difficult is it for you to talk about having RA?