Xeljanz: New Med, New Life?
Hoping to gain a "new life" from an RA medication, like the title of this article suggests, is maybe a little extreme and naive, I know. Yet since I began taking Xeljanz over two months ago (I started in mid-September), I do have a renewed sense of hope that maybe this will finally be the drug that works best for me and my RA.
And dare I say it? Could the R-word even be around the corner (or a few corners) sometime in the near future? I've never been in "remission" or anything close to it during all of these 18 years of having the disease, but I wouldn't mind experiencing it right now. I've been waiting so long to be free from the physical and emotional pain of RA, and especially free from dependance on that awful yet wonderful drug, prednisone.
Since Fall of 2002, I've been on five different biologic medications: Enbrel, Remicade, Humira, Orencia, Remicade (again), and Actemra. Before starting Xeljanz, Actemra was the most recent and worst one. My rheumatologist and I took a big risk switching to Actemra in January 2015 after many years of mostly-successful Remicade infusions. Why the change? My right foot and ankle kept flaring up and requiring treatment with prednisone even though the rest of my joints remained mostly pain-free and stable. My rheumatologist was hesitant to change treatments, but we both agreed that I needed to get off and stay off of prednisone somehow.
Disappointedly, Actemra did not prove to be the "magic bullet" drug I had hoped for, and after several months of giving it a good try, my RA and body (and mental state) was much worse off than when I was on Remicade. The deciding factor which encouraged my quitting the medication was after I had a severe flare-up in July when I was living in New York. Both feet and ankles became excruciatingly inflamed and painful. Other joints that hadn't flared-up in over 10 years began to swell and hurt bad, including both wrists, both hands, elbows, and knees.
I quickly realized how lucky I had been all of those years of being on biologic medications that worked well for the most part. Fingers resembling fat sausages, sensitive to the tiniest of touch, used to be just a bad memory--until last July when I could barely walk or use my hands or simply move. Climbing up and down the three flights of stairs to and from my attic apartment in Brooklyn was agony, so I basically became a hermit for weeks, ingesting large doses of prednisone and praying that the pain would soon lessen and go away.
Flaring in the unbearable heat and humidity of New York City in August is a punishment I wouldn't wish on my worst enemy. Day after day of horrendous heat in a city of eight million people while all of your joints are burning up in their own RA inferno was pure hell. I felt oppressed and claustrophobic trapped in my apartment and trapped in my broken body. I needed to escape.
On the first day of September, drugged up on painkillers, I gritted my teeth and dragged and thumped my several pieces of heavy luggage down those steep flights of stairs where I lived. Exhausted, I then collapsed into a car bound for La Guardia airport and flew home to Minneapolis. I was disappointed and sad to leave New York, but my RA was wildly out of control and something needed to be done.
After arriving back home in Minnesota, I was lucky to get an appointment with my rheumatologist right away to discuss the horrible flare-up that continued to attack my joints, despite the high dose of steroids I was still taking. There was little discussion or debate about keeping me on Actemra any longer, given the angry state of my body. Xeljanz was the next experiment and I readily jumped at the chance to try it.
Xeljanz isn't technically a "biologic" drug, but it's a disease-modifying antirheumatic drug (DMARD), like Methotrexate. However its effectiveness has been compared to some of the biologic medications, such as Humira, Enbrel, and Rituxan. It's also the first medication in a new class of drugs called JAK inhibitors, which work by blocking Janus kinase, or JAK, pathways involved in the body's immune response. Xeljanz fights inflammation from inside the cell, attacking a different part of the pathway than biologic agents, which block pro-inflammatory proteins from outside the cell ("FDA Approves New Drug for Rheumatoid Arthritis").
Another new thing about Xeljanz, which I'm quite happy about so far, is that it's taken orally. Since 2002 I've been either giving myself injections or receiving I.V. infusions, and while it's a bit strange to not have to do that anymore, it's also nice in a way. Taking my little white Xeljanz pills at home twice a day is proving to be more convenient and less painful than giving myself shots or driving to the clinic to get hooked up to I.V. equipment. Just pop the pill in your mouth, take a swig of water, swallow, and you're done! The only problems I might see happening are forgetting to take the second pill of the day or losing the pills altogether if I have to bring them with me somewhere. I'm often forgetful and I lose things all the time, but hopefully this won't happen.
So, finally, here's the question I probably should have addressed at the beginning of this article: Is Xeljanz working? I'm not totally sure, but I think so. It's only been a little over two months since I started taking it, yet I have been able to slowly taper down on my dose of prednisone, which is wonderful.
From the end of July until about the second week of September, I was taking 30 mg of prednisone every day. Right now I've been teetering back and forth between 8-10 mg a day for the last two weeks or so. But, I'm at a lower dose right now than I have been in many months--before taking Actemra. I hope so much that the Xeljanz will work well and will kick in even more and better in the next month or two. Apparently some patients experience significant relief of symptoms in 1-2 weeks after starting the drug while for others it can take 3-6 months to fully work. I'm in limbo now, I guess, and that's a difficult place to be.
Switching to a new RA medication can be a very scary thing, especially if you have a bad flare-up in the process. The complexity of the disease and the workings of each person's body often make this "game" of trial and error frustrating, depressing, worrisome, and disheartening.
However, if a medication doesn't work anymore, then changing medications is often a necessary evil. The "evil" and cruel part of it, I think, is the waiting. Waiting to get an appointment with your rheumatologist. Waiting for lab work. Waiting for your health insurance company to approve your new medication. Waiting to get on a financial assistance program for the medication. And ultimately waiting to see if the new drug will even work.
Trying a new medication is a risk, but it's a risk worth taking. What other choice does one have? I'm willing to do and try anything I need to in order to be as healthy as possible. Right now I'm really hoping that Xeljanz will make that happen.
On a scale of 1(low) to 5(high), how difficult is it for you to talk about having RA?