Eyes on the Prize?

Most of us with rheumatoid arthritis are faced with frequent conundrums when it comes to treating this disease. As RA is an autoimmune condition, rheumatologists often prescribe immunosuppressant drugs to combat it. This means that in weighing the pros and cons of taking these medications, we must factor in a greater risk of infections. In addition, many pharmaceuticals used to treat RA have side effects that can range from annoying to intolerable. In spite of this, many people such as myself decide that the risk of infection and some degree of unpleasantness from side effects is worth preventing the irreversible joint deterioration this degenerative disease can cause. Yet, this decision-making process is ongoing, as my thoughts on the matter fluctuate right along with my disease activity. I want to be on the fewest number and lowest dosages of RA medications as possible while keeping my symptoms at a manageable level. Therefore, as my symptoms wax and wane over time, so do my concerns about side effects. When I’m in a flare, controlling the pain becomes paramount and pushes all other worries aside. In the absence of frequent flares, I again start to worry about the negative impact the drugs I am taking might have on my body. Such was the case at a recent ophthalmologist appointment.

I first had my eyes checked about a decade ago, when I realized that subtitles and far off signs were becoming fuzzy. As my life has been filled with medical abnormalities since a young age, I decided to go to an ophthalmologist, rather than an optometrist. An ophthalmologist is a doctor who specializes in medical and surgical care of the eyes and prevention and treatment of eye disease. In contrast, optometrists are not required to complete medical school. Rather, they attend four-year optometry schools and are licensed to determine the presence of vision problems. An optometrist is qualified to do vision tests and write prescriptions for glasses and contact lenses, but does not have the level of expertise an ophthalmologist has in diagnosing and treating medical problems with the eyes. Again, since I’ve had unusual health issues since childhood, I figured that having the medical expertise of an ophthalmologist would be beneficial, even if I only ended up needing glasses.

As it turned out, it was a good move for me to engage the services of an eye specialist. At my first appointment, I learned that not only had I become near-sighted, I also have enlarged optic nerves. This increases the likelihood of developing glaucoma, so annual appointments are recommended in order to treat the condition early, should it develop. In addition, RA can cause inflammation in the eyes. This, as well as corticosteroid treatment, can make people with RA more likely to develop glaucoma. The combination of these risk factors has motivated me to keep up with annual eye appointments.

Nearly a year ago, the need for annual ophthalmologist appointments was again highlighted when my rheumatologist added Plaquenil to my treatment regimen. While this drug can be effective in decreasing pain, swelling, and the risk of joint deterioration, it also carries some potential side effects. The most concerning of these is retinal toxicity, which occurs in 0-4% of patients taking the drug.¹ While this is a fairly rare side effect, it can cause irreversible vision loss. Initially, patients experiencing low retinal toxicity levels may be asymptomatic. As the condition progresses, people may notice diminished color vision or have difficulty reading. As related vision loss can be irreversible, it’s important to catch any signs of retinal toxicity as early as possible. Therefore, rheumatologists prescribing Plaquenil typically advise patients to have annual exams with an ophthalmologist.

I felt the weight of the concern about this potential side effect at my last appointment with my eye specialist. Before starting Plaquenil, my ophthalmologist ran the standard vision and pressure tests used to screen for glaucoma. Now that I’m on this medication, my appointments have become longer, as the visual field test is extended when screening for retinal toxicity. There is a flag on my chart noting that I’m on Plaquenil, and each professional I encountered in the course of my exam commented on this treatment. As I sat uncomfortably on a stool with my chin held at an odd angle while I underwent the extended field test, I pondered whether the risks are worth it. I’m currently on four drugs for RA, so it’s impossible to know exactly what percentage each medication is contributing to my disease management. The awful experience of living in pain, coupled with the fear of joint damage, has made me complicit with my rheumatologist’s advice. Yet, I don’t want to prevent joint damage by causing eye damage. In moments like that, I feel like having RA is a series of Sophie’s choices, where either option is a huge loss.

Fortunately, thus far I have not shown any indications of retinal toxicity. It turns out that hearing the words “there is no sign of toxicity” from the mouth of an ophthalmologist is an absolutely beautiful experience. In addition, the risk for retinal toxicity increases with prolonged use of Plaquenil, with patients taking the drug for five years or longer being at an increased risk for this side effect. Therefore, it is my hope that sometime in the next four years I will be able to go off of Plaquenil. My dream is that as I continue efforts to decrease stress in my life and increase healthy practices that I will diminish my need for as many RA drugs. However, even if that doesn’t come to pass, so many new treatments continue to come to market for RA that it leaves room to hope that something more effective, and that won’t put my eyes at risk, may be around the corner.