Hello Again, Humira
"Now the drugs don't work, they just make you worse" is a song by The Verve (The Drugs Don't Work) which keeps popping into my head again lately, and there's an understandable reason why--my RA drugs aren't working. Singer Richard Ashcroft is most likely lamenting, er, other drugs, but that lyric won't leave me.
It seems that 2015-present are the years of RA drug "experiments" gone wrong; first Actemra failed and then most recently Xeljanz joined the club. I try to keep reminding myself of what I've heard one of my RA friends say, "YOU don't fail the drugs, the DRUGS fail you." Realistically, I know this, but sometimes it's hard to not feel like a failure when your RA and body are out of control and it feels like nothing will work. But you have to keep moving forward, right?
Because of my refusal to give up and let RA "win," that brings me to taking bi-weekly injections of the TNF-inhibitor Humira again. The last time I was on Humira was in 2007-2008, and back then it worked well. It was more of a situational reason that I switched to Humira instead of staying with Remicade infusions, which also worked well and kept my RA pretty stable.
In 2007 I moved to France to teach English in two public middle schools (collèges, ages 11-15) and both my rheumatologist and I decided it would be easier for me to physically get Humira instead of trying to sort out receiving I.V. infusions in another country. My insurance, of course, also played a (negative) role in this decision, regarding lack of coverage.
One of the main goals of both my rheumatologist and myself is for me to stop taking prednisone and to stay off of it. Frustratingly, this has not been possible so far, and I honestly can't remember the last time I wasn't taking it for an extended period of time. I've definitely been on it consistently while taking Actemra and Xeljanz, which would equal approximately 20 months, I think.
The day I sat with my rheumatologist in one of the patient rooms exactly one month ago as of writing this, when I said, "Yes, let's go back to Humira," I then heard him tell me that I would need to stop taking Xeljanz for two weeks. Two weeks with no Xeljanz? Even if it wasn't working that great? Sigh. It's strange how sometimes two weeks can fly by very quickly and then sometimes the days drag at an unbearably tortuous crawl. So I had two more weeks of the RA flare-up and probably an increase in pain and swelling before I could administer my next weapon against this relentless biologic battle.
Two weeks passed, and finally it was time to use my fancy new auto-injector Humira pen and inject myself in the upper thigh like I had been shown by a nurse a few weeks ago. Last time I took Humira, the pen wasn't available and I had to mix vials like a mad scientist and use scary syringes. The nurse who showed me how to use the pen assured me that it was easier than using syringes, yet a bit more painful. More painful? It's funny how even intense physical pain can quickly fade from one's memory once it's subsided, yet my brain still holds onto the memories of the sharp, breath-taking, electric STINGING FIRE of those Humira shots in 2007. OK, this will be fun.
In order to prepare for THE SHOT, I took one of the Humira pens out of the fridge and let it sit on the kitchen counter for about two hours to warm up a bit, hopefully to lessen the pain/stinging when it came time to inject it into my soft, tender, innocent flesh (notice what a dramatic baby I'm being about this?). Actually, I have a very high pain tolerance, but I'm willing to do whatever it takes to make this process go as painlessly and smoothly as possible.
When the two hours of "warming up" the Humira were almost finished, I grabbed an ice pack from the freezer and placed it on the spot on my upper left thigh (where the nurse instructed me to inject the pen) and numbed it until it had lost a considerable amount of feeling. I then placed the pen, alcohol wipes, and my little notebook of instructions and steps that I had written during my visit with the nurse all next to me on the table where I was sitting. Oh, before sitting down I also made sure that I washed both of my hands thoroughly with antiseptic soap.
I poked at my leg. Was it numb? Could I feel it? I think so? I don't know. I was so nervous that adrenaline was shooting throughout my whole body and my hands were shaking like a meth-head in need of a fix (not that I know what that's like, of course). I had planned to do this alone in the privacy of the kitchen. I mean, I had done it countless times before using the syringes. But then I had an image of me doing something stupidly wrong, like the pen flying out of my hand and landing in my eye or piercing a toe. Who knows. I called for my mother to come into the kitchen to stand there just in case...of something.
After ripping open one of the alcohol wipes, I rigorously wiped a large area of my leg with it, where I was going to place the pen. Then I reread my instructions, noting that once I remove the two caps and then finally push THE BUTTON, I had to hold the pen in place until the little window on the pen turns the color yellow. OK, that seems easy enough, I suppose. But what if I'm screaming my head off? How can I hold the pen there? What color yellow? Bright yellow? Pastel yellow? Eggshell yellow? Get a grip, I told myself.
Holding my breath, with my mother looking in a completely different direction (she hates needles and blood), I removed Cap #1 from the pen and then Cap #2. With my left hand, I grabbed a large area of muscle and fat on my thigh and placed the pen/needle in the center of that area. Then I sat there and stared at it for what seemed like 30 minutes.
"I don't want to do this!" I told my mom.
"I know you don't," Mom said. "But you CAN do it. You always do what you have to do."
"OK, here we go," I said. I screwed my eyes shut tightly, opened them, and then pressed that little button on the top of the pen and held it there, pressed firmly into my leg.
HOLY (Ff34#)$(!)FD#($*(@#$*!!!!! PAIN! PAIN! STINGGG!! EEEEEEE!!!! FIRE! SHOOT ME!! WAHHH!
It was done. And in another two weeks, I would get to do it all again. I'm pretty sure it won't be as dramatic next time though. And, honestly, using the pen was much easier than having to mess around with syringes. The yellow indicator made itself known as well, which was a relief.
So hello again, Humira. Have you missed me? Frankly, I have not missed interacting with you. But I've missed you fighting against my RA and helping me to live a pretty stable, pain-free life as best as possible. My body, soul, heart, and neuroses plead with you--please work again.
Has having RA put a hold on your ambitions?