As I near the one-year anniversary of starting my Kineret injections, I want to take a moment to bask in the glow of getting my inflammatory arthritis into remission. I was one of the lucky people who responds to anakinra almost immediately, with a significant reduction in symptoms (in my case a magical ACR70 level of improvement) within six weeks. My rapid response further cemented my rheumatologist’s hunch that my arthritis is autoinflammatory rather than autoimmine in nature, and closer to Adult Onset Still’s Disease (AOSD) or Tumor necrosis factor receptor-associated periodic syndrome (commonly known as TRAPS) than to seropositive Rheumatoid Arthritis. We also briefly hoped that my success with Kineret meant that all my symptoms had been from AOSD/TRAPS and would resolve with Kineret treatment, but a recent Lupus flare–likely triggered by reducing prednisone and plaquenil–unfortunately suggests otherwise. (That, however, is another story for another time.)
Kineret gave me my hands and feet back. It also helped to control my frequent low-grade fevers and GI symptoms. It has improved my skin rashes. I’ve had fewer secondary infections. I have more energy on a lower dose of prednisone. Compared to how I felt two or three years ago, the change is nothing short of miraculous, and you can see it in my hands:
But Kineret isn’t for the faint of heart. It requires a daily injection. Every single day. And the solution is considered “preservative-free” but it contains sodium citrate– also known as citric acid. This means the injection feels about as good going in as pouring lemon juice in a paper cut. In additional to all the regular scary warnings that come with biologics (risk of infection, malignancies, anemia), there’s also a high chance (about 70%) that you will develop an injection site reaction (ISR) during the first four weeks of treatment. I made it through the first two weeks without incident, so I thought I had escaped the window of opportunity for an ISR. Wrong. Oh, how wrong I was.
When the rash first started to appear in small clusters of red bumps, I though I was having an allergic reaction to something environmental, like laundry detergent. Then, a few days later, the initial clusters became enormous plateaus of raised, angry welts. (Meanwhile the newer injection sites produced the small clusters.) In a few more days, the big welts would harden and darken, like bruises. At this point, they managed to be both painful and itchy simultaneously. It was during this time that I was trying to run a 300-person conference, so I dosed myself with antihistamines at night and periodically applied antihistamine gel during the day and tried so very hard not embarrass myself by scratching my upper thighs in public. As I swelled up and the injectable real estate on my thighs got more and more exclusive, I thanked whatever deities might be listening that I hadn’t tried injecting my stomach.
While all this was going on, I tried to search for pictures of anakinra ISRs online, but nothing useful came up. So for the sake of science, and other autoimmune and inflammatory arthritis patients, this is what Kineret (anakinra) injection site reactions look like. (ISR photos below the cut.)
Still trying to get the hang of WordPress templates and php.
Our perfect companions never have fewer than four feet. ~Colette
I’m writing this post with my new Dragon Dictate software. I’m not sure I’ve quite gotten the hang of thinking out loud–literally–yet. It’s strange to hear my own voice echoing against the walls of my apartment, a space that is usually so quiet. My cat, Stella, is sitting on the couch next to me. We both just heard the sound of another cat meowing and turned to look at one another. She has now turned back to the more important task at hand, napping, and tucked herself against my left hip, her chin resting on her paws. I think that she is used to hearing me address her in the singsong baby talk voice I always swore I would never use with a pet or child. This strange, serious dictation voice, however, is not my “normal” voice, singsong or otherwise. But I’m not worried. I’m sure we will adjust to this, just as we have adjusted to all the changes we’ve both encountered over the past six months.
I resisted adopting a cat for many years. I always said I was “more of a dog person,” or that I was too busy to have a pet. And I was. In a previous life I was gone every other weekend, flying to New York or Los Angeles, attending conferences, always on the move. But then I got sick. And not briefly sick, like I had been before, not sick for a few weeks or a month, but sick for months and months. And suddenly that part of my life ended. The radius that separated me from the circumference of my life shrunk from thousands of miles to less than one hundred. Travel began to take serious planning and mean a gamble with my health. I’m not even sure that I was aware of this at the time. I was too busy with the business of being sick, and trying to get well. I know I didn’t grieve the shrinking boundaries then.
The Sunday before Labor Day, I decided to take a trip to the Atlanta Humane Society. I told myself I was “just looking,” but I picked up a litter box just in case. I spent time with four cats that afternoon. In the last 30 minutes before the shelter was closing, I met Stella. Or maybe I should say that Stella found me. And now I can’t imagine my life without her. She keeps me company while I’m working, she greets me at the door when I come home from school, she sleeps next to me on the bed and sometimes—when I wake up in the middle of the night—I reach out to pet her and I am reassured, just knowing she’s there.
This entry was composed as part of the ChronicBabe blog carnival “you are loved.”
9 January 2012: This blog post has been included in RA Warrior’s blog carnival on pain scales. While my entry is a bit on the irreverent side, check out some of the other entries for more thoughtful perspectives on tracking, quantifying, and communicating pain. Thanks for including my post Kelly!
I’ve been thinking a lot lately about how easy it is for a continuous level of pain to become the “new normal”— like when your pain is at a “5” consistently, that becomes your baseline and you forget what a “0” or a “1” felt like before you were in pain all the time.
For the last few years, my feet have been the bellwether of my arthritis. When I’m feeling good, my feet feel pretty good. When a flare is bearing down on me, my feet are the first to respond. Last week, I tried (and failed) to put on a cute pair of sandals to go out and realized I’d gone a month without wearing heels.
Since the standard pain chart is woefully inadequate (as outlined hilariously over at Hyperbole and a Half), I decided to make one of my own: a shoe shorthand for my pain levels. Note that these are shoes for my professional life, not necessarily what I’d be wearing if my day involved reading, writing, and picking up some groceries (that’s what slipper socks and Uggs are for, right?). So if you catch me at work in a pair of sneakers, it might not be the best time to ask for that extra favor…
Pain Level: 0
Pain? What Pain? I feel awesome today!
Pain Level: 4
You’ve got to be kidding me if you think I’m putting these swollen toes into a pair of heels.
Pain Level: 8
Don’t even ask, or I might have to tell you about how it feels like someone
has shattered all the bones in my feet with a hammer. Literally.