Do any of you have any experience with vision problems caused by Plaquenil toxicity? Or any experience quitting Plaquenil because of it?

[ASigmon]

[Suzypawz]

If you develope any type of visual disturbances you need to see gp as this is one of the side effects from plaquinil that have to be kept an eye on.

[TJSTICKYBLOOD]

Can anyone confirm, if your on plaquenil and you have a letter from your GP/consultant the eye test is free?

[KJay]

Hi ASigmon,

I developed hydroxychloroquine related retinopathy after being on the lowest dose of Plaquenil and only taking it every other day. I was on it for about 18 months. My experience was as if there was a small circle of tracing paper in my central vision and I was only aware of it when I was reading as it obscured the type.

I was seeing an opthalmologist at the hospital at the time for something unrelated. When he examined the back of my eye, he told me to stop taking the medication immediately. I have been very lucky apparently as what I called 'the blob' gradually disappeared.

I knew when I took Plaquenil that this was a potential side effect of chloroquine but was told that hydroxychloroquine was safe except in large doses over a long period of time. I was also told that there had been a 5 year study into the use of hydroxychloroquine and its effect on eyesight and there was not one case of retinopathy in that time.

I was seeing Professor Hughes who was staggered by my reaction and I also saw Professor D'Cruz at St Thomas' on the NHS who said that it was an extremely rare reaction..

So it's very unusual it seems but possible and if I have had it, then potentially so can others.

Needless to say, if I were in your shoes, I would get it checked out by an optician (you will probably get to see them more quickly than an opthalmologist) immediately and see your GP as soon as you can and ask for a referral to an opthalmologist. Time is of the essence as if it is caught early, if you have retinopathy, it may be reversible. Mine fortunately was and obviously I don't take Plaquenil anymore.

Best of luck and I hope you get your problem and obvious worries resolved quickly. x

[ASigmon]

Thanks, everyone. A update: I have several advanced vision tests. The consensus is that I have mild retina impairment "cosistent with" planquenil toxicity, So I have stopped the drug. And am just wondering whether by APS will flare up as a result. I was wondering whether anyone else in the group has stopped taking Plaqueni, and if so, what was the result? FYI to the group: I found out that Plaquenil toxicity is rare in people who have taken the drug for less than five years. I've taken it for 12. And, a 2011 study found that toxicity is more common in people who have a lifetime dose of more than 1,000 grams. My lifetime dose is already over 1,700 grams, So, really, stopping Plaqueil was my only choice.