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Hydroxychloroquine side effects

Autoimmune Diseases | Last Active: 8 hours ago | Replies (43)

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@naturalcranberry
My experience with plaquenil is an initial visual field eye exam and then every 6 months thereafter. My Daughter is taking it now for RA which is why I took it. She is also on the every 6 months schedule. We are in the US. Interesting that the schedule for you at Mayo is so different. Both my daughter and I were in mid 50s when we started it.
I did a little research and found this from the American Academy of Ophthalmology . It looks like the protocol is no longer what it used to be and what Mayo is doing is the currant protocol.
https://www.aao.org/education/clinical-statement/revised-recommendations-on-screening-chloroquine-h
I have retinal toxicity from it. I was overdosed from the beginning. in 2000 at 200 mg twice a day. In 2000 there was no protocol to give it according to weight. That came later. I remained on it for 12 years at that overdose. I am a small, thin person. My weight has been stable at approximately 52 Kg.
Perhaps they are doing eye exams on my daughter every 6 months because of my having retinal toxicity. My eyes have not gotten worse since being off of Plaquenil. I stopped it in 2012.

This is the currant protocol for dosing Plaquenil

"Dosage: The recommended daily dosage remains unchanged at ≤5.0 mg/day/kg real weight. Keep under 400 mg/day for severly obese patients."

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Replies to "@naturalcranberry My experience with plaquenil is an initial visual field eye exam and then every 6..."

@missy245 Oh wow, that was a huge dose of plaquenil!!! I’m on 200mg every other day, 100mg every other day. When that wasn’t sufficient, we tagged in Humira.
And yes, I have to imagine that your retinopathy likely has something to do with the high dosing, as well as your daughter’s frequent exams - I’m glad they’re exercising caution with her, given the family history.
It’s interesting how often standards and protocols change, but I’m glad that they update those for just this reason!
And thanks for the link!