Congress of Clinical Rheumatology Annual Meeting
Congress of Clinical Rheumatology Annual Meeting
September 27, 2019
2 min read

Rheumatologist input absent in disputed hydroxychloroquine guidelines

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Michelle A Petri

SAN DIEGO — The 2016 recommendations by the American Academy of Ophthalmology on “proper” dosage of hydroxychloroquine lacked essential input from rheumatologists who rely on the drug to improve survival in patients with systemic lupus erythematosus, according to a presentation at the 2019 Congress of Clinical Rheumatology West.

“I want to start with what I truly believe — and no ophthalmologist can shake my faith in this — hydroxychloroquine should be the background therapy for all lupus patients,” Michelle A Petri, MD, MPH, MD, director of the John Hopkins Lupus Center, told attendees. “Not just because we need to control the most common organ system activity but also for its preventive role.”

She added, “When my patients say to me ‘my lupus is fine; I don’t need my hydroxychloroquine anymore,’ I tell them that it is their most important long-term medication to prevent future flares. Hydroxychloroquine is the only medication we have that has been proven to improve survival. Perhaps we are afraid to mention mortality to our lupus patients, but at some point we have to — and perhaps also scream it to our colleagues in ophthalmology.”

The guidance released by the American Academy of Ophthalmology emphasizes the risk for retinopathy and suggests the dose be limited to 5 mg/kg of body weight. The contested recommendations also cast doubt on whether patients were being adequately informed of dosage levels as well as whether hydroxychloroquine was safe to administer in any capacity.

The 2016 recommendations by the American Academy of Ophthalmology on “proper” dosage of hydroxychloroquine lacked essential input from rheumatologists, according to Petri.
Source: Adobe

“According to the guidelines ‘patients should be informed about proper dose levels,’” Petri noted. “I don’t want an ophthalmologist who doesn’t treat lupus to be deciding what is proper and improper for these patients. That should be based on evidence-based medicine.”

Additionally, Petri found the association’s position statement quite sobering. “‘It is not clear that there is any truly safe dosage for long durations of use’ — I think their position statement should be interpreted as saying we should not be using hydroxychloroquine at all.”

Although tamoxifen — a drug commonly used for breast cancer treatment — has also been implicated as a risk factor for retinopathy, Petri questioned why it had not been included in the guidelines since “everybody respects an ophthalmologist being in charge of breast cancer treatment.”

“Similarly, who is in charge of lupus?” Petri said. “Shouldn’t it have been rheumatologists working with ophthalmologists on these guidelines?”

Petri also expressed concerns about patients being overly influenced by ophthalmologist warnings that hydroxychloroquine could cause blindness, which would impact medication adherence and potentially worsen outcomes.

“I would never scare a patient into stopping her tamoxifen, so why do ophthalmologists scare my patients into stopping their hydroxychloroquine?” Petri said. “You know that if you say this word ‘blindness’ to a patient, they don’t hear anything else. And if an ophthalmologist has led off the discussion with ‘blindness,’ that patient won’t listen to anything I have to say in a factual manner.”

Despite the continued dispute over hydroxychloroquine dosage, Petri applauded other aspects of the recommendations.

“I thought the guidelines for monitoring patients were correct and I want everyone to adopt them,” she said. “Bottom line: If we were to follow the monitoring guidelines, retinopathy would always be picked up so early by [optical coherence tomography] that the patient would be asymptomatic, with no visual loss then or later.”– by Robert Stott


Petri MA. Hydroxychloroquine: Is it for every lupus patient? Presented at: Congress of Clinical Rheumatology West; September 26-29, 2019; San Diego.

Disclosure: Petri reports consulting relationships with Amgen, Boston Pharmaceuticals, Bristol-Myers Squibb, EMD Serono, GlaxoSmithKline, Janssen and Novartis.