Biologic Limbo
RATE

I realized the other day that I’ve now passed the six-month mark of taking adalimumab, also known as Humira, for the second time in my life. Last May, after nine months of being on Xeljanz with little to no relief, my rheumatologist recommended that I try Humira again. The last time I had taken Humira was in 2007 when I briefly moved to France to teach English.

Shortly before leaving Minneapolis, my rheumatologist and I decided to switch from successful Remicade infusions to the self-injectable Humira–mostly due to convenience issues. Figuring out a way to get I.V. infusions in France for a relatively short period of time seemed like too big of a headache to deal with, especially with all of my health insurance “red tape.” I was also very determined to go to France and not let anything get in my way, so I gladly put up with the painful, stinging bi-weekly needle jabs. Living in lovely Normandy surrounded by gorgeous medieval architecture, fresh pastries on street corners, and delicious cheese almost made up for it.

Thankfully, the Humira injections worked just as well as Remicade and my RA remained stable (and my body prednisone-free) while I lived and traveled abroad. When I returned home to Minnesota, I went back to receiving Remicade infusions every two months, happy to relax and read a book in a comfy chair rather than stabbing my thigh or stomach with a terrifying needle. I hated giving myself shots, no matter how many times I did it (my first biologic was bi-weekly shots of Enbrel). And thankfully, Remicade worked well at keeping my RA under control for a second time. Great!

Fast-forward 10 years to December 2016. I can say with 100% certainty that right now, even as I sit here typing this article, my RA is NOT stable. Nor am I prednisone-free. And it’s not great. I feel like I’m living in some sort of “limbo land,” or biologic purgatory, as I wait and hope for Humira to work for a second time. Sadly, I have a sinking feeling that it’s not going to help this time around. Feet, ankles, fingers and hands keep swelling up in extreme shooting pain. Also telling is that I haven’t been able to get below 10 mg of prednisone for any real length of time. I’ve been stubbornly stuck at 15 mg for several months now, which is depressing. My main goal along with that of my rheumatologist is to get me off, and keep me off, prednisone for the long term. I can’t even remember anymore when I last had an extended break from that wonderful yet terrible steroid.

The last appointment I had with my rheumatologist was on October 12th, and during the appointment, we discussed how Humira didn’t seem to be as effective as it was the first time I had it. However, I did tell him about my recent experiences changing to a vegan diet and then also falling off the “vegan wagon.” When I was being very strict about the diet, I did see noticeable improvements in swelling and pain. And when I became lax and fell back into my “normal” diet of meat, dairy, and eggs, I definitely noticed a spike in pain and inflammation and my RA growing worse. So, you can probably guess what my doctor’s advice was at that last appointment: Go back on the vegan diet and try to taper off the prednisone again. See what happens, and then we’ll discuss switching to yet another biologic. However, what’s a bit worrying is the fact that I’m getting dangerously close to running out of biologic drugs; I’ve been on six since 2003 (Remicade and Humira twice).

So let’s get back to the diet. Despite that not too long ago I was ecstatic to actually see results from sticking to eating vegan (and gluten-free when I could), once I reverted back to my old eating habits, it’s been extremely difficult to get back to where I once was. Fall is an especially challenging time of year regarding food temptations; Halloween treats, three November birthdays (mine included), and Thanksgiving all make abstaining from favorite foods and treats nearly impossible. And then of course, you know what comes after Thanksgiving: Christmas! How can I bake my favorite Christmas cookies with my nieces and not sample a few? Well, I’ll have to try. Hard. Being stuck in “biologic limbo” and in pain really isn’t worth a few cookies, chocolate Santas, or Christmas Day stuffing. I am determined and rededicated now to hopping back on the “vegan wagon” and escaping from this RA purgatory of pain. We’ll see how it goes.

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