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.)
The problem with having two (or more) autoimmune conditions is that the treatments for one can exacerbate the other. I have failed Arava (or, more truthfully, Arava has failed me). Now the only option left before going to biologics (which my insurance will only partly cover, plus they have a fail-first policy, hence the endless wait) is sulfasalazine, which may resolve my GI issues and RA symptoms, but could potentially make my lupus symptoms much worse. At this rate, I almost feel like prednisone is easier and safer. What a mess. And why do I still feel like it’s my fault that the treatments don’t work instead of the other way around?
As you may have noticed, I haven’t posted in a while. Mostly I’ve just been busy—working, teaching, writing my dissertation, and trying to having something of a social life. Basically I’ve been playing at being a normal person. And I did a pretty good job at it, too. This weekend though, all the small complaints that I had been collecting over the past few weeks (feet too sore to wear heels, intense morning stiffness, knee pain, fatigue, photosensitivity, GI issues) seemed to snowball together, and now I’m lying on the couch feeling sorry for myself. I like to think I’m getting better at not blaming myself and riding the wave of flare and remission, but it’s still really hard. Sometimes I feel like as soon as I get everything under control and establish a routine, something new pops up to wipe me out again.
Between the Arava and inflammation I’ve lost more than 10 pounds since August, despite still being on a low-moderate dose of prednisone. While for many people that would be a victory, for me it isn’t—I’m already at the low end of normal BMI. The GI symptoms I’ve had recently, which may or may not be from the Arava, have not helped either. I’ve been tracking my stress levels and watching the foods I eat, cutting out wheat and dairy, but it just seems to be totally random and unpredictable. I’d like to exercise too, but I don’t have the energy (yes, that old chestnut). And it’s hard for me to take the compliment when people tell me how good I look, since I feel so unwell and unfit inside. I suppose I should be pleased that my make-up skills are good enough that I don’t look like death warmed over.
All this makes it sound terrible to be me, but that isn’t really the case. I’m just frustrated with my body. I really am grateful and content most of the time. I have lots of love in my life and people who are looking out for me; I have a job that I find satisfying and fulfilling; I have my academic work—which I love, even if academia makes me a little crazy sometimes; I’m financially stable and I have decent health insurance, though I often have to fight to get what I need; and I have various volunteer and social commitments that keep me engaged in my community when I’m able. It’s a good life, even if it’s not the one I thought I was going to have.
This morning, Gretchen Rubin, author of The Happiness Project, posted the following question on her Facebook feed:
Happiness Question: Do you consider exercise to be a treat or a chore?
While I might have considered exercise a chore in my life before my Lupus/RA diagnosis, it is now definitely a treat. While once-upon-a-time my aspirational images came from glossy fashion magazines, I now gaze longingly at the running, stretching, dancing, and climbing women in magazines like Self and Women’s Fitness (the same smiling women who can be out in the sun without a hat, long pants, and long sleeves). I flip through the Athleta catalogue, mourning the days when I had enough energy to run 12 miles and go to three yoga or dance classes in a week– which is to say, meet the guidelines for 30-60 minutes of exercise per day. I have the schedule for my local dance studio open in my browser, just on the off chance I feel up to a yoga or ballet class (this actually happens about once every six months.). I’m lucky that I haven’t gained more than a couple of pounds on prednisone, but that doesn’t stop me from grieving from the active, capable body I used to have.
Those of you who have been following this blog for a while may remember my cranky response to a small study on exercise and RA patients that received a lot of media attention last winter. The conclusions of the study authors seemed to suggest that RA patients as a whole were less active than the general population, and that this was the result of their attitudes and beliefs about the benefits of exercise, not their pain level or ability to exercise. The mainstream media took these conclusions and ran with them, trumpeting headlines like “2 in 5 RA Patients Sedentary.” This is, in my opinion, a gross oversimplification of some complex findings. One, RA patients, when grouped by age, are only slightly less active than the general population. Two, the findings in the study are skewed by a large number of older patients, a population that a) tends to be less active in general; and b) includes many individuals who received an RA diagnosis during the 1980s (or earlier), when the general consensus in the medical community was that exercise was more harmful than beneficial to joints affected by RA. So rather than trying to shame all RA patients into more exercise, which downplays the fact the many RA patients continue to deal with pain and fatigue, even once they reach so-called “clinical remission,” I think the study suggests that older RA patients need outreach to encourage them to be more active. The rest of us who want to exercise and can’t? I don’t know what the solution is, except better treatment options and access to those treatments, less reliance on broad-spectrum immunosupressive drugs like methotrexate that sap energy, and more access to gentle exercise modalities like swimming and tai chi.
I’ve always been an active person, if not an intensely athletic one. I played soccer as a child until I was sidelined by arthritis in my ankles and knees in my teens. I continued to dance, on and off, into my late 20s, and I took up running and hot yoga during a particularly energetic period in my mid-20s. But now fitting in exercise requires a complex balancing of my time and energy. In order to find the energy to spend 30 minutes on the elliptical machine or in the pool at the gym, or attend a gentle yoga class, I have to take into consideration that it will probably sap the rest of my physical energy for the day. I weigh questions like “If I go to the gym, will I have the energy to prepare myself food, or catch up on housework when I get home?” “Will the benefits outweigh the inevitable pain?” Most days the answer is no, and I must prioritize my basic needs above exercise, which has become a luxury. (I have begun to count “doing laundry” as a form of exercise—there are two flights of stairs involved). While I have had peaks and valleys of energy during the past two years, my average leans more toward “fatigue”. I hope some day I will find a treatment that allows me to return to the realm of the athletic. In the meantime I eat well, but I wear my yoga pants at home and gaze longingly at the Athleta catalogue from the couch.
How do you stay fit with chronic illness?
I’m scheduled to meet with US Senator Johnny Isakson (R-GA) next week to discuss specialty tier medications and how medicare and commercial insurance policies are preventing patients from accessing life-saving medications. Anyone else negatively affected by specialty tier pricing? I’d love to share your stories as well as mine.