Skip to Accessibility Tools Skip to Content Skip to Footer
Eyes on the Prize?

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.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The RheumatoidArthritis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

  1. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4233433/

Comments

  • RHPass
    3 years ago

    I was quite surprised 6 yrs ago to be told I was on the brink of acute glaucoma. i was fortunate to find out in time.. I had laser iridotomy in both eyes. literally had a hole poked in my eyes with a laser. thankfully I can now have dilation of the eye and all remains well.

  • Tamara Haag moderator author
    3 years ago

    Hi RH, thanks so much for sharing your experience! I’m sure that was a very scary experience, but I’m so glad that the surgery was successful. Your story provides hope for those with advanced cases. Thank you for sharing!

  • Kacey
    3 years ago

    I see both an optometrist and an ophthalmologist and at my recent visit with the optometrist I had my vision prescription change (for the worse) for the 2nd time in two years. Before that I had had the same prescription for over ten years. The doctors say they don’t think it’s my RA but the timing is suspicious since I was diagnosed almost two years ago. I’ve also had a lot of difficulty lately with my contacts being uncomfortable and I’m wondering if I have chronic dry eye which is not uncommon in people with RA. I use rewetting drops but I’m not sure that’s a long term solution

  • Tamara Haag moderator author
    3 years ago

    Thanks so much for sharing your experience, Kacey! When you say “doctors,” do you mean both your ophthalmologist and your rheumatologist? It’s great that you are asking them about this. Doctors don’t have all the answers, but they do have some. You are right that there are other eye problems that can come with RA. Here are a couple of other articles you may be interested in: https://rheumatoidarthritis.net/living/jeepers-peepers/ and https://rheumatoidarthritis.net/symptoms/eye-problems/. Autoimmune conditions are so complicated that there is still much that researchers do not yet understand, so I certainly understand your concern. Thanks for being part of our online community! The more information we share with one another, the better we can try to understand exactly how this disease operates. Take care, Tamara

  • LifenowwithRD
    3 years ago

    This topic comes at the perfect time for me. I just had my visit with the opthalmologist partially because I was over due and mostly because of the Plaquenil I recently started taking. Thankfully this is the only RA med I am on so far, although I’m sure there will most likely be more added someday. I’ve never had a 2 1/2 hour eye exam before – wow! My eyes still are strained but it was good to hear everything is going well. When I started this med I got the basic info about it from my rheum, but then I researched it on my own and wondered too if I really was OK taking it. I like being able to see! So it was a great relief to me that all is well with the eyes even if the hands, feet and neck refuse to follow suit. Thanks for another great article!

  • Tamara Haag moderator author
    3 years ago

    Thanks so much for sharing your experience! I’m glad that your (very long) appointment resulted in good news. I’m glad you’re in our online community. Please know that if you ever do start any other RA meds and have questions about them, or about anything RA-related, you are always welcome to post them to this site’s forum or to our Facebook page. We love to provide information and support whenever possible. I hope your eyes remain in good health, and that your treatment helps your RA. All the best, Tamara

  • Poll