I do take a counter view to our saying that HCQ retinopathy is rare as we are misleading physicians and patients. I'll preface my comments in saying that absolutely almost all patients with SLE should be on an antimalarial as the benefits outweigh the risks.
- I now have 12 HCQ retinopathies in my lupus cohort
- The largest series to ever look at the prevalence of HCQ-retinopathy by Welles and Marmor last year showed close to a 20% prevalence after 20 years of tx (looking at those who were dosed at 5mg/kg actual body weight). http://archopht.jamanetwork.com/article.aspx?articleID=1913588&
- Since when can we call a 20% prevalence "rare"?
- Although this is after 20 years of tx, we must keep in mind that we began to use HCQ universally in the late 90s. Our SLE pts are living longer; those pts who were in their 20s and 30s at that time are now in their 40s and 50s. We are just now seeing the "tip of the iceberg" in my opinion.
What we rheumatologists need to do:
- Stop saying "rare"
- Ensure all our pts get the VF 10-2 + either SD-OCT or mfERG or FAF yearly (don't assume it is done)
- Dose HCQ at 5 mg/kg actual body weight if their SLE can handle that lower dose.