Jodonna, I took it for 32 years and only stopped it two years ago as a precaution, as I developed cardiac arrhythmias, likely caused by lupus. HCQ is not recommended in those with arrhythmias.

In order to avoid retinal (and probably other) toxicities, it's critical not to exceed 5 mg per kg of your body weight in your daily dose. So, to take 400 mg daily, as you are doing, you must weigh at least 176 pounds. These guidelines are from ophthalmology research, as exceeding this dose increases the risk of eye toxicity.

Please discuss this with your rheum if you're on more than what's recommended, as some doctors aren't aware of these relatively newer guidelines.

I had to stop taking plaquenil because it caused retinal damage to my eye. It doesn't happen to everyone taking it. It is best to see an ophthalmologist who will monitor your eyesight.

One of the side effects that I was unaware of was psoriasis. I stopped take Plaqenil more than 10 years ago but I’m still dealing with a raging case of psoriasis (I have three different kinds of psoriasis) which at times covers 85% of my body. The real kicker is I don’t think I got a lot of relief from SLE symptoms while on plaquenil so now I deal with itchy, scaly, flakey skin for no reason.

I stopped taking it because of severe headaches and dizziness.

@A MyLupusTeam Member What other medications were offered to you? Everyone reacts to medications differently.

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