Hydroxychloroquine causes irreversible eye damage

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My friend began taking HCQ, to treat an auto-immune condition called 'Eosinophilic fasciitis'.

I've been reading like crazy and it appears that HCQ (especially in high doses, but even in normal doses of 400mg/day) can cause eye issues, irreversible and continued Retinal Toxicity/toxic retinopathy that just continues to degrade, even if you stop the drug.

I'm kind of losing my mind over this.

I don't know what dose they are taking but I intend to find out today.

Not sure what to do as there is not much drug treatments for them... they were just on high dose and long term prednisone which is being weaned off now and it's almost finished. This had some benefit but issue still persists which is why HCQ is now added.

What is your input folks?
 
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people talking about their eye problems from hcq usage IMPORTANT PLEASE, TAKE NOTE; I have been diagnos... - LUPUS UK.


 
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Improper Dosing and Other Risk Factors

The 2011 American Academy of Ophthalmology (AAO) guidelines identified a cumulative dose of >1000g for increased risk of retinopathy.1,15 The 2011 guideline recommended that the daily dose of HCQ be no more than 400mg and that lower doses be calculated based on ideal body weight in the range of 6.5mg/kg for thin patients and those of short stature.14,15 It was also noted that obese patients can be dosed based on height if weight is not known.15

In 2016, the AAO revised the 2011 HCQ/chloroquine screening standards in response to new scientific data that identified specific risk factors for toxicity.5 A retrospective case-controlled study by Melles and Marmour that included 2,361 patients who used HCQ for at least five continuous years demonstrated a higher risk of retinal toxicity based on daily dose, duration of use and kidney disease.5,6,13 Risk factors identified included HCQ daily dose >5mg/kg actual body weight, use for greater than five years, reduced glomerular filtration rate, concurrent use of tamoxifen and pre-existing maculopathy.1,5

Although patients older than 60 years were previously thought to be at a higher risk of retinal toxicity, studies suggested that age alone was not a risk factor.5,13 However, since elderly patients are more likely to have decreased renal function or macular disease, their risk of toxicity is increased.1,5,13 Additionally, very thin patients were identified as having increased risk when dosing was based on ideal body weight.5,13

By identifying the retinal changes that occur earlier than the classic bullseye maculopathy pattern, researchers found a 7.5% risk for patients using long-term HCQ therapy, which is three times higher than the risk previously reported.10,13 The authors suggested a revised dose calculation to ≤5mg/kg/day using actual body weight, but no more than 400mg total daily.5,6,13 The subsequent risk of toxicity at this recommended dose is <1% up to five years, ≤2% at 10 years but then increases to almost 20% after 20 years.5 A patient who has no toxicity after 20 years has approximately a 4% risk of converting in the subsequent year.5,13

In addition to dosage, other factors increase the risk of toxicity. Kidney disease markedly increases the risk of retinopathy.1,2,5,13 A 50% decrease in kidney glomerular filtration rate will double the risk of ocular toxicity; the prevalence increases to greater than 50% in doses higher than 5mg/kg when used longer than 20 years.1,2,5,13 While HCQ is partially cleared by the liver, organ disease has not been reported to increase the risk of retinal toxicity.1,2,5 Tamoxifen, a non-steroidal estrogen antagonist used in the treatment of breast cancer, has its own risk of toxic retinopathy.11,13,15,16 The use of both HCQ and tamoxifen has an adverse synergy which increases the risk of retinopathy.13 Patients who are on both medications are at significantly higher risk of developing toxic retinopathy.1,2,11,13,16

A comprehensive medical history to review for the above risk and calculating the HCQ mg/kg actual (or real) body weight at each eye examination will provide the information needed to decide how often your patient should return for testing.
 
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