Overall, the statement authors emphasize the value of HCQ & concur that it can be safely used when given at an appropriate dose & with recommended eye screenings.
Specialist Input & Patient Desires
Collaboration between patients and subspecialists is key to informed decision making. Notes Dr. Rosenbaum, “The patient should seek input from the ophthalmologist about their risk in terms of future vision and should seek input from the rheumatologist in terms of the value of the medication.”
With that information, the patient can participate in shared decision making about possible decreased dosage and/or increased frequency of eye testing. (Alternatively, more specialized tests, such as autofluorescence, could be performed by a retina specialist.) But it can be challenging to find the best ways to educate patients about risks without unduly dissuading them from a drug that may be valuable for them.
In the real world, Dr. Rosenbaum acknowledges that coordinated care input between healthcare professionals can be a challenge. “I think the biggest issue for all of us is time, and we’re not generally compensated for the time we take trying to find another physician and talk. But another issue is how siloed we’ve become in terms of our expertise and knowledge base.”
Moving Forward
The statement does not speak to other potential toxicities from HCQ, such as cardiac, muscular or dermatologic effects. A second coordinated statement is under review regarding cardiotoxicities relevant to HCQ, some of which gained attention from the COVID-19 pandemic.
Updated information on managing eye toxicities may eventually appear if more becomes known about the drug’s effectiveness at different dosages, if we gain prospective data on toxicity or if we learn more about how blood levels might help effectively manage care.
Rheumatologists should consider lowering doses of HCQ in patients currently taking 400 mg daily if their weight puts the dosage over the AAO recommended amounts (maximum dosage of 5.0 mg/kg/day). Because HCQ is such a long-acting drug, patients could alternate taking daily 400 mg and 200 mg doses to achieve this.4
Dr. Rosenbaum underlines one of the statement’s key points. “It basically says, above all else, we need to do a better job communicating with our colleagues in different subspecialties. And it says that fundamentally the advice offered in 2016 by the American Academy of Ophthalmology remains correct.”
Ruth Jessen Hickman, MD, is a graduate of the Indiana University School of Medicine. She is a freelance medical and science writer living in Bloomington, Ind.
Workgroup members
- James T. Rosenbaum, MD, Departments of Medicine, Ophthalmology, and Cell Biology, Oregon Health & Science University, Legacy Devers Eye Institute, Portland
- Karen H. Costenbader, MA, MD, MPH, Division of Rheumatology, Inflammation, and Immunity, Brigham and Women’s Hospital, Boston
- Julianna Desmarais, MD, Department of Medicine, Division of Arthritis and Rheumatic Diseases, Oregon Health & Science University, Portland
- Ellen M. Ginzler, MD, MPH, Division of Rheumatology, State University of New York Downstate Health Sciences University, Brooklyn
- Nicole Fett, MD, MSCE, Department of Dermatology, Oregon Health & Science University, Portland
- Susan M. Goodman, MD, Division of Rheumatology, Hospital for Special Surgery, Weill Cornell Medicine, New York City
- James R. O’Dell, MD, Section of Rheumatology, University of Nebraska Medical Center and Omaha VA Hospital, Omaha
- Gabriela Schmajuk, MD, MSc, University of California San Francisco Division of Rheumatology, San Francisco VA Medical Center and Philip R. Lee Institute for Health Policy, San Francisco
- Victoria P. Werth, MS, MD, Department of Dermatology, University of Pennsylvania and Corporal Michael J. Crescenz VA Medical Center, Philadelphia
- Ronald B. Melles, MD, Department of Ophthalmology, Kaiser Permanente, Redwood City, Calif.
- Michael F. Marmor, MD, Department of Ophthalmology, Byers Eye Institute, Stanford University Medical Center, Stanford, Calif.
References
- Rosenbaum JT, Costenbader KH, Desmarais J, et al. ACR, AAD, RDS, and AAO 2020 Joint statement on hydroxychloroquine use with respect to retinal toxicity. Arthritis Rheum. 2021 Feb 9.
- Marmor MF, Kellner U, Lai TY, Melles RB, Mieler WF, for the American Academy of Ophthalmology. Recommendations on screening for chloroquine and hydroxychloroquine retinopathy (2016 revision). Ophthalmology. 2016;123(6):1386–1394.
- Winebrake J, Khalili L, Weiner J, et al. Rheumatologists’ perspective on hydroxychloroquine guidelines. Lupus Sci Med. 2020 Nov;7(1):e000427.
- Marmor MF, Carr RE, Easterbrook M, Farjo AA, Mieler WF; American Academy of Ophthalmology. Recommendations on screening for chloroquine and hydroxychloroquine retinopathy: A report by the American Academy of Ophthalmology. Ophthalmology. 2002 Jul;109(7):1377–1382.
- Alarcón GS, McGwin G, Bertoli AM, et al. Effect of hydroxychloroquine on the survival of patients with systemic lupus erythematosus: data from LUMINA, a multiethnic US cohort (LUMINA L). Ann Rheum Dis. 2007;66(9):1168–1172.
- Melles RB, Marmor MF. The risk of toxic retinopathy in patients on long-term hydroxychloroquine therapy. JAMA Ophthalmol. 2014;132(12):1453–1460.
