Updated Guidelines December 2020
Following the publication of the RCOphth recommendations for monitoring in hydroxychloroquine and chloroquine users in 2018, new published evidence prompted a review of the guideline.
Recent data have highlighted that hydroxychloroquine retinopathy is more common than previously reported. The prevalence in long-term users appears to be around 7.5% and depending on dose and duration of therapy can increase to 20-50% after 20 years of therapy. Risk increases for patients taking more than 5mg/kg/day.1 This is important as the only intervention to prevent further damage is stopping the drug. The risk is increased for patients taking more than 5mg/kg/day, those also taking Tamoxifen, and those with renal impairment.
We recommend all patients be referred for annual monitoring after five years of therapy and be reviewed annually thereafter whilst on therapy. At each monitoring visit, patients should undergo imaging with both spectral-domain optical coherence tomography (SD-OCT) and widefield fundus autofluorescence imaging (FAF). If widefield FAF is not available, FAF can be acquired in several photographic fields to encompass the macula and extra-macular areas.
Monitoring may be started one year after therapy is initiated if additional risk factors exist e.g. very high dose of drug therapy. Chloroquine appears to be more retinotoxic than hydroxychloroquine and so we recommend that monitoring begins after one year of therapy for all patients on chloroquine, using the same tests.
Baseline testing for new initiators of hydroxychloroquine or chloroquine is no longer recommended. This amendment is supported by recent evidence of a low rate of drug discontinuation as a result of baseline testing (less than 4%).Furthermore, it is recognised that a significant proportion of patients discontinue hydroxychloroquine in the first five years of therapy. Adequate monitoring may not be possible with retinal co-pathology. This may be identified at the first monitoring episode, and a discussion with the patient and prescribing physician about the suitability of continued hydroxychloroquine therapy may be arranged. There is no specific recommendation for patients to arrange annual community optometry assessments, or any specific form of self-assessment, before monitoring commences.
Monitoring may be best incorporated into the hospital eye service via virtual clinics. Alternatively, they may be commissioned in the community similar to a diabetic retinopathy service. The results of monitoring should be communicated back to the prescribing doctor, patient and GP as normal, possible or definite hydroxychloroquine retinopathy. It is the prescribing doctor’s responsibility to ensure their patients are adequately monitored and to act on the results of monitoring. A useful aide memoir for these guidelines for hydroxychloroquine is the 5 x 5 rule (ideally keep dosage < 5mg/kg/day and monitor after five years of drug use.
These recommendations (2020) replace the previously published recommendations for monitoring for hydroxychloroquine and chloroquine users (2018).2
Read our current guidelines here.
- Melles RB, Marmor MF. The risk of toxic retinopathy in patients on long-term hydroxychloroquine therapy. JAMA ophthalmology. 2014;132(12):1453-60.
- Yusuf IH, Foot B, Galloway J, Ardern-Jones MR, Watson SL, Yelf C, et al. The Royal College of Ophthalmologists recommendations on screening for hydroxychloroquine and chloroquine users in the United Kingdom: executive summary. Eye (London, England). 2018;32(7):1168-73.