Coming off plaquanil

I have recently been diagnosed with Behcets syndrome, having been diagnosed with Sarcoidosis for 7 years prior to that.

I have been on 200mg of Plaquanil per day to help my joints, for over 6 years now. I have been advised to come off it now, as my symptoms are less, and as a sufficient amount has built up in my system to potentially cause eye problems...?

My problem is that on the 5 occassions I have attempted to come off it, or reduce it to alternate days, or half a day, over the past 3 years...I have experienced changes in my vision and/or pain in my eyes within a day or two!

No one seems to think there should be any problems coming off it, yet I am experiencing this consistenly, and have had to visit the eye hospital on 2 of the occassions.

Do you have any advice with regards coming off plaquanil? Should this be happening? What should I do?

[Enoch Choi, MD]

hydroxychloroquine is plaquenil, which can cause eye problems

it's uncommon to have eye symptoms coming off of the medication

ask your doctor for evaluation of other causes of eye discomfort and vision changes

[danhowitt]

I didn't know there was this connection between hydroxychloroquine and eye problems, though uncommon.  Interesting.

[danhowitt]

I wonder how uncommon, Dan Howitt.