The Neglected RA Symptom: Infections
Rheumatoid arthritis/rheumatoid disease (RA/RD) is a misunderstood condition. First, there are the common public misperceptions about the disease. Most people don’t understand that there are a plethora of different types of arthritis, instead believing that anything with “arthritis” in the name refers to osteoarthritis. Then there is the lack of awareness that RA/RD is an autoimmune condition, and little understanding about what autoimmune conditions even are. Add that RA/RD is often an “invisible disability” in which those of us living with it often “look fine” on the outside, and people get even more confused.
While most individuals without chronic health conditions don’t have a clue about what life with a disease is like, even those of us who have RA/RD sometimes misunderstand our symptoms. There’s that in-your-face symptom of pain that always makes itself known and can be impossible to ignore. Yet, we sometimes downplay or ignore other symptoms.
For instance, while inflammation is a common and problematic RA/RD symptom, unless the swelling is severe it can be easy to underestimate the significance of this symptom while focusing on pain. Fatigue is even trickier, as even many rheumatologists don’t attend to fatigue with the same level of attention they give to pain and inflammation. Even though fatigue can be as detrimental to one’s quality of life as pain can be, we sometimes forget to view fatigue through the RA/RD lens. Patients with RA/RD may not discuss problematic fatigue with their doctors, and doctors often don’t bring it up.
Similarly, frequent infections are a symptom of both RA/RD and a side effect of the immunosuppressant drugs often used to treat it, yet this is something that isn’t discussed with the frequency that pain and inflammation are. Because the immune system is malfunctioning in people with RA/RD, we are already at a greater risk for infection.1 As our immune systems misdirect their firepower at our joints (and other body parts) instead of focusing solely on bacteria and viruses, the medical treatments for RA/RD often involve subduing the immune system. While that is good for our disease activity level, it can make us even more susceptible to infections.
I am currently battling yet another sinus infection. I came down with what would likely have just been a cold for a person with a healthy immune system. However, for me it became an acute sinus infection with alarming speed. Even my ENT was surprised at how severe my symptoms and scan were after only having started feeling sick two days prior. She started me on that oh-so-familiar antibiotic and steroid treatment that I go through multiple times a year. The meds did start reducing the symptoms within 24 hours, but now, days later, the symptoms are hanging on with a tenacity that those with healthy immune systems wouldn’t understand.
Every year I have a number of infections, which typically include several upper respiratory illnesses, a few yeast infections, a handful of cold sore outbreaks, the flu for the past two consecutive years (in spite of getting the flu shot), and an occasional UTI. This has become par for the course, and as I have experienced these series of illnesses on an annual basis, infections are now something I discuss regularly with my rheumatologist.
In western medicine, doctors often focus on symptoms in silos rather than on how the entire body is operating. Every month when I go in for my Orencia infusion I am asked if I have had any recent infections and whether I’m on antibiotics, as there are risks involved for getting an infusion of immunosuppressant when fighting an infection. Yet, when I go for a checkup with my rheumatologist every three months, this is not a routine question on the forms I fill out or in the exam room. Therefore, I have learned that I need to bring up my concern about infections at each appointment.
Talk with your doctor about infections
Awareness of the impact of the symptom/side effect of infections on my quality of life is important for my doctor to bear in mind. My rheumatologist does take this concern to heart. There have been times when he has wanted to increase my RA/RD meds in an effort to get my pain and inflammation levels as low as possible. However, when we discuss the frequency and unpleasantness of my infections, he weighs that in and holds to a more moderate treatment plan.
While I’m the one who reminds my doctor of my infections, I keep finding I have to remind myself, too, to consider infections when I am making decisions. My body often lets me know when I’ve overdone it by presenting me with a flare or an “activity hangover,” which are obviously directly caused by RA/RD. However, sometimes, like right now, I’m battling an infection that is also in response to overdoing it. Yet, because someone else in my home or workplace might also be sick, I can dismiss my infection as something that’s “going around.” While germs are shared from person to person, what isn’t shared is my proclivity for infections. I have to remember that when I don’t take the time for self-care, not only do I run the risk of a flare, I also make myself more vulnerable to RA/RD-related infections.