Arthritis disease flares are like in-laws. They appear unannounced when your house is a chaotic mess and are about as enjoyable as cleaning the toilet. I’m just kidding. My life is easy and perfect, and I don’t even have any in-laws. Please don’t @ me. I’m sure your in-laws are very kind, lovely people.
Anyway, a couple months ago, a rheumatoid arthritis flare reared its ugly head and really walloped me. This time, it was like a double flare with extra cheese. (Yes, I still eat dairy.)
My rheumatoid arthritis already makes me walk like Frankenstein — that was a given I’d gotten used to. But all of a sudden, I was walking like a combination of Frankenstein and Quasimodo. I guess that would be like the chronic illness version of Sharknado.
I wasn’t just crippled in the morning. My consistently bad left Achilles ached all day long. I also had new random pains. Suddenly, my left wrist throbbed, my right toes cramped without warning, and my big left toe felt like it’d been plugged into a light socket. Any time I took a step barefoot on tile, I felt a zap, like “Zzzzzzt!” running up the top of my foot. If you don’t want to think about my feet, I don’t blame you — just know that I frequently get professional pedicures with baby blue nail polish. It’s not too gnarly.
My fatigue was off the charts, too. I was slightly dizzy and off balance, needed more naps than usual — plus a forklift to pull me up from the couch, off the toilet, out of the car, basically anytime I stood up after sitting for a few minutes.
This was not normal.
Is My RA Treatment Still Working?
I had been getting biologic infusions (a medication called Remicade, or infliximab) every eight weeks for going on five years. I felt pretty good — until recently.
I had sort of noticed that the last couple times, a couple weeks before I was due for my next infusion, I wasn’t feeling my best. In fact, two weeks before my last infusion, I had similar issues to this flare, maybe not quite as severe. I remembered struggling to make it to the infusion because I felt like the Tin Man in The Wizard of Oz — so many similes, so little time — then feeling instant relief and a lot looser in my joints immediately after my appointment.
So, I gave my rheumatologist a little ringy-ding-ding to go over these new, unfortunate developments in my increasingly deteriorating and dilapidated body. Actually, it was a telemedicine appointment, which I highly recommend.
“I’m really having trouble getting around lately, like the last few times right before my infusion,” I told him from the comfort of my living room couch. My doctor always takes the time to listen to me describe my symptoms, even when my dog is barking in the background, and I’m wearing giant headphones and look like Skrillex. He’s a gem. My doctor, not the DJ. In my defense, in his headphones, my doctor looked like a Times Square tour bus guide.
We discussed the possibility of the biologic wearing off. “It can and does happen,” he told me. It wasn’t an anomaly, it was a normal thing that can happen. Some patients develop antibodies to biologics over time, which can make the medication less effective at controlling symptoms.
“How do you decide whether or not to switch medications?” I asked.
Considering a Medication Switch
There were pros and cons to swapping out one treatment for another. Obviously trying something new might work better, but there was no guarantee. Plus, once I switched to something else, if the new treatment didn’t work and I wanted to go back to Remicade, there was no guarantee it would work as well as it once did.
I honestly wasn’t even sure whether my new symptoms were related to my RA. It’s true that I’d gone off methotrexate (which I take along with my biologic) for two weeks after I got a COVID booster shot. I’d also been playing a ton of golf, so maybe it was weekend warrior-type sports injuries. There was no absolute way of knowing.
“If I switched medications, how do you know which one to pick?” I asked my headphone-donning doctor, who, now that I thought about it, looked less like a NYC tour guide and more like Ariana Grande onstage at Madison Square Garden.
He suggested the next medication he would recommend would be a different biologic called Simponi (golimumab). Like Remicade, it is a anti-TNF biologic. It acts on immune system proteins called tumor necrosis factor, or TNF, to tamp down overactivity and inflammation in RA.
Remicade may be more likely than other TNF biologics to cause the development of those antibodies that make the medication less effective, I learned.
Another benefit of switching, he explained, was that a Simponi infusion would only take an hour versus two or three for my Remicade infusion. I didn’t tell him I loved sitting in the infusion chair for three hours dozing off while watching Flip or Flop reruns on HGTV. I didn’t want him to think I was lazy.
It sounded promising but I’d seen a lot of fancy commercials lately for new pills to treat RA. Couldn’t I just take one of those?
My doctor explained that the pills were a new class of disease-modifying antirheumatic drugs (DMARDs) called Janus kinase (JAK) inhibitors. They work on the immune system in a different way than biologics do to combat RA. While TNF inhibitor biologics block proteins that help immune system cells communicate with each other, JAK inhibitors work more inside the machinery of cells themselves, which prevents them from being able to signal to each other, thus disrupting inflammatory processes. Two entirely different strategies/angles to combat RA.
“I’m sorry, I got Ds in science my whole life,” I said shrugging. He might as well have been speaking Mandarin.
What he said next, now that I understood easily.
The U.S. Food and Drug Administration recently raised some safety issues regarding JAK inhibitors. Earlier this year, they issued a warning based on research that found an increased risk of heart events like heart attack and stroke, as well as certain cancers, among people on the JAK inhibitor Xeljanz (tofacitinib) compared to those on TNF inhibitor biologics. The people in the study were over age 50 and had heart disease risk factors.
Well, I’m 52 and I hate swallowing pills anyway. And on the flip side, my doctor mentioned other research that showed that patients on biologics may have a lower risk of heart disease.
A note from CreakyJoints: Researchers are continuing to study and understand how various disease-modifying antiheumatic drugs, including biologics and JAK inhibitors, may differentially affect the risk of heart events, cancer, blood clots, and other serious side effects. While some studies have found an increased risk of heart events in tofacitinib compared to other treatment, others have not. More research is needed on other JAK inhibitors, since not every medication may work the same way in the body. It’s best to talk to your doctor about your own medical history and risk factors to decide on the right treatment for you. Read more here about the latest news on JAK inhibitors and inflammatory arthritis.
Now, I know all medications have side effects and we have to weigh the benefits and risks with our doctors.
I decided it makes sense for me to stick with a biologic for now. But I was still confused about whether or not to switch from Remicade. My doctor presented an excellent case, but I still wasn’t entirely sure I wanted to rock the boat.
Ultimately, we chose to go with one more round of Remicade and check back in about my symptoms at the end of it to see if I got any better. Fortunately, I did. Eight weeks later, I felt more like my old self. Not my old, old self — the one without rheumatoid arthritis who could run and jump and play tennis — but a decent self who could play golf badly and not walk like Quasimodo afterward.
For now, I’m holding off on switching my meds. I’m going to stick with what works (my Remicade infusions plus methotrexate) for the foreseeable future.
But I’m going to keep a careful eye on any changes in my symptoms, especially in the weeks leading up to my next infusion. I’m even writing them down in a special notepad I labeled “FLARE OF EASTOWN.”
On a serious note, I’m very glad I had a real, in depth talk with my RA doctor. I now feel quite educated about my meds and prepared to make a change if I start to feel wonky again. There will be no need for me to suffer any longer than I have to. I feel fortunate to have options.
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FDA Requires Warnings About Increased Risk of Serious Heart-Related Events, Cancer, Blood Clots, and Death for JAK Inhibitors That Treat Certain Chronic Inflammatory Conditions. U.S. Food & Drug Administration. September 1, 2021. https://www.fda.gov/drugs/drug-safety-and-availability/fda-requires-warnings-about-increased-risk-serious-heart-related-events-cancer-blood-clots-and-death.
Karpouzas GA, et al. Biologics May Prevent Cardiovascular Events in Rheumatoid Arthritis by Inhibiting Coronary Plaque Formation and Stabilizing High-Risk Lesions. Arthritis & Rheumatology. April 2020. doi: https://doi.org/10.1002/art.41293.
Martinez-Santana V, et al. Comparison of Drug Survival Rates for Tumor Necrosis Factor Antagonists in Rheumatoid Arthritis. Patient Preference and Adherence. Julty 2013. doi: https://doi.org/10.2147/PPA.S47453.
Tumor necrosis factor-alpha inhibitors: Induction of antibodies, autoantibodies, and autoimmune diseases. UpToDate. https://www.uptodate.com/contents/tumor-necrosis-factor-alpha-inhibitors-induction-of-antibodies-autoantibodies-and-autoimmune-diseases/print.
Van Taunay JS, et al. Biologics and Cardiovascular Disease. Journal of Cardiovascular Pharmacology. August 2018. doi: https://doi.org/10.1097/FJC.0000000000000595.