I’m currently sitting in an infusion center getting a dose of Actemra. This is a double dose, 640mg, as the single dose did not appear to be working well for me. My rheumatologist decided this action based on several key factors. It’s been a rough couple of months as I’ve experienced an increase in joint pain and swelling, been constantly tired, and lacked energy and motivation. Many of the patients around me in the infusion center are cancer patients who are receiving chemotherapy. As I look around at these folk, it is clear that they have some of the same symptoms.
This recent episode caused me to investigate why I felt so bad and I stumbled upon something called “sickness behavior”. The best way for the general population to understand this feeling is to think about what it’s like while fighting an infection like influenza or pneumonia. In summarizing the source and symptoms of sickness behavior, researchers stated,
“It was subsequently shown that physiological concentrations of proinflammatory cytokines that occur after infection act in the brain to induce common symptoms of sickness, such as loss of appetite, sleepiness, withdrawal from normal social activities, fever, aching joints and fatigue.”[i]
According to researchers at the University of Illinois, it was reiterated that sickness behavior can be brought about by pro-inflammatory cytokines. They stated,
“The behavioral repertoire of humans and animals changes dramatically following infection. Sick individuals have little motivation to eat, are listless, complain of fatigue and malaise, loose interest in social activities and have significant changes in sleep patterns. They display an inability to experience pleasure, have exaggerated responses to pain and fail to concentrate. Proinflammatory cytokines acting in the brain cause sickness behaviors.”[ii]
The same cytokines that are involved in autoimmune diseases like rheumatoid arthritis – TNF alpha, Interleukin-1 (IL-1), and Interleukin-6 (IL-6) – are implicated in sickness behavior.[iii] Increased levels of these cytokines are observed in patients with RA. In one study, sickness behavior was even observed in volunteers who received a typhoid vaccine which increased the levels of IL-6 in the blood.[iv] The same symptoms are observed in patients with diseases that involve the immune system such as AIDS, coronary heart disease, cancer, systemic infections, etc.[v] People might act like such symptoms are “all in your head” but there are biochemical reasons behind these symptoms.
This brings me back to Actemra. It is designed to block the signaling processes of IL-6 which are thought to be overactive in RA patients. If IL-6 can be blocked, then symptoms of RA such as joint destruction can be controlled. In addition, Actemra may assist with reducing fatigue experienced by RA patients.[vi] All of this makes sense in light of the sickness behavior theories discussed above. My rheumatologist once told me that the first sign that a biological treatment was working was a patient experiencing more energy.
Within the first month of receiving Actemra infusions, my energy levels skyrocketed and joint pain was reduced. But that experience was short-lived. I’m hoping that the double dose brings a return of that wonderful feeling. In the meantime, I just feel sick!
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