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Hydroxychloroquine and the Eyes

After recently attending the ACR Conference in Chicago, there was one session that stirred up the crowd with a tornado of heat, sound, and friction more than most. Though we were in the “windy city” this gust wasn’t coming from outside, it was coming from the intensely focused and authoritative speaker, Dr. Michelle Petri.

Dr. Michelle Petri was chosen not only as a key speaker at this years ACR conference, but also as the recipient of the Evelyn V. Hess Award by the Lupus Foundation of America. Dr. Petri has had a lifelong commitment to lupus research and her extensive contributions have impacted the field of rheumatology for over 30 years. If you are unfamiliar with her background, she is the Professor of Medicine at the Johns Hopkins University School of Medicine, is the Director of the Hopkins Lupus Cohort, a longitudinal study of morbidity and mortality in systemic lupus erythematosus, and Co-Director of the Hopkins Lupus Pregnancy Center.

Dr. Petri received the Evelyn V. Hess Award because of the science that she has helped advance through clinical and basic research to better understand the nuances of lupus treatment. This includes the Hopkins Lupus Cohort, a 30 year study measuring the connection between gene markers, and cardiovascular risk factors and disease activity, as well as, delving into corticosteroid toxicity in lupus, and the importance of the role of hydroxychloroquine in lupus.

Which brings me back to her session at the ACR Conference. Dr. Petri spoke at length about hydroxychloroquine, what it does, how it should be prescribed, and the ever controversial conversation of how hydroxychloroquine may affect the eyes.

Now, for many who are newly diagnosed with lupus, hydroxychloroquine (or the brand name Plaquenil) is the first line of treatment. Hydroxychloroquine is considered a disease-modifying anti-rheumatic drug (DMARD) and is in a class of medications that was first used to prevent and treat malaria. Today, it is used to treat lupus, rheumatoid arthritis, and other autoimmune diseases.

Now, depending on how much shared decision making occurs in the visit, many new patients walk out of the doctor’s office with unanswered questions about this “antimalarial” that they are being prescribed to treat their fatigue and help protect their organs. So naturally, people take their questions to the “guru of the globe,” AKA Google. What proceeds is a late night reading session of every blog and chat forum that describes a small percentage of individuals that have experienced plaquenil poisoning of the eyes. The fear then sets in, and the patient decides not to comply with taking the drug, and his or her lupus gets worse.

So what did Dr. Petri say about this? Her dissertation had many points, so I will bequeath to you the Cliff Notes version. Essentially, she spoke directly to two different groups. One: the patient and how essential complying with taking the medication as prescribed is, and two: non-rheumatologists (primarily Ophthalmologists) who are cautioning patients to believe they should be weary to take it due to retinal toxicity and visual field changes of the eyes.

Dr. Petri stated in the session and in an article for Rheumatology Network, that, “In the United States, patients are usually monitored by ophthalmology. I have never had a patient go blind in over 40 years of prescribing it (hydroxychloroquine).” When she spoke of patient compliance, (refers to the process whereby the patient follows or doesn’t follow the prescribed regimen intended by the clinician) she said this, “In the general population, only 50 percent of patients take their medications. We need to accept that this is also true in systemic lupus erythematosus. Not taking hydroxychloroquine can have devastating long-term consequences.”

There have been many studies that have shown how medication non-adherence predicts poor outcomes in SLE. Since hydroxychloroquine is the cornerstone of medical treatment in SLE, having been shown to prevent flares, decrease blood pressure, thrombosis, insulin resistance, improve cutaneous manifestations, arthritis, and more - it is pivotal for patients to understand that not taking it correctly can have significant negative outcomes including increased organ damage and mortality. Dr. Petri found that by measuring the levels of hydroxychloroquine in blood tests during office visits, she was able to notify patients whose levels were sub-optimal, therefore, improving patient adherence by 80%.

Regarding other doctor’s opinions (referring mainly to ophthalmologists) about hydroxychloroquine use, Dr. Petri’s stance was firm. “A few patients had been told it causes blindness and had been frightened” she stated in Rheumatology Network and at the ACR Conference. She continued, “We stop [hydroxychloroquine] if there are progressive changes on monitoring such as optical coherence tomography that our retina specialist is sure are due to the drug. We just increase monitoring if we are not sure, or if there is no proof of progression. There are no safe alternative medications — so stopping it makes the management of the patient much more difficult.”

Essentially, her point was clear. The benefits of taking hydroxychloroquine far outweigh any effects on the eyes for most of the population. Now every lupus patient is different, and some can be sensitive or even allergic to the medication. However, for most, people treated with hydroxychloroquine early after diagnosis, have less cumulative organ and joint damage than those who do not take the drug. And though it is important to follow up with eye check ups with an ophthalmologist, only your rheumatologist should make the decision if a change in dose is needed.

Personally speaking, I have been on higher doses of hydroxychloroquine (400 mg) for over 15 years and a lower dose for less than 10 years. I have my eyes checked every 6 months and have never had any observed issues. The only observations I can state, is that I am indebted to the discovery of the use of hydroxychloroquine in lupus. It was a game changer in my lupus journey. And these eyes can see one thing very clearly, and that is a much longer and healthier journey thanks to the HQ.

Thank you Dr. Petri for your persistence on this matter, for all the years you have devoted to understanding lupus research, and improving lupus treatments!

  • For more information on the benefits of hydroxychloroquine, click here.

  • For more information on dosing recommendations of hydroxychloroquine, click here.

Article By:

Kelli Roseta

**All resources provided by this blog are for informational purposes only, not to replace the advice of a medical professional. Kelli encourages you to always contact your medical provider with any specific questions or concerns regarding your illness. All intellectual property and content on this site and in this blog is owned by This includes materials protected by copyright, trademark, or patent laws. Copyright, More Than Lupus 2018.


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