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A MyLupusTeam Member asked a question 💭
Oxford, MS
May 13
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Answer Summary

Members shared varied experiences with Plaquenil toxicity and retina damage, with the general consensus being that the damage is irreversible... Read more

Members shared varied experiences with Plaquenil toxicity and retina damage, with the general consensus being that the damage is irreversible but can be caught early with regular eye exams every six to twelve months. Several members described personal outcomes ranging from vision loss that partially returned after stopping the medication, to long-term use with no issues, highlighting how differently people respond. A recurring theme was frustration over Plaquenil shortages and brand substitutions, with some members feeling abandoned by their doctors and left without effective lupus treatment.

MyLupusTeam

This is such an important question. Unfortunately, retinal damage caused by Plaquenil (hydroxychloroquine) toxicity is generally not reversible. Once damage to the retina occurs, it tends to be permanent — and in some cases, vision loss can even continue to progress even after stopping the medication.

This is why early Show Full Answer

This is such an important question. Unfortunately, retinal damage caused by Plaquenil (hydroxychloroquine) toxicity is generally not reversible. Once damage to the retina occurs, it tends to be permanent — and in some cases, vision loss can even continue to progress even after stopping the medication.

This is why early detection is so critical. Regular eye exams are strongly recommended for anyone taking Plaquenil, typically:

- A baseline eye exam when first starting the medication
- Annual screenings after 5 years of use (or sooner if there are risk factors)

Risk factors that may increase the chance of retinal toxicity include:

- High daily doses relative to body weight
- Long-term use (more than 5 years)
- Existing kidney issues
- Pre-existing retinal or macular conditions

The good news is that catching changes early — before significant damage occurs — gives the best chance of preserving vision. If toxicity is detected early, stopping the medication can help prevent further damage.

It's really important to talk to both a rheumatologist and an ophthalmologist about this. They can work together to weigh the benefits of staying on Plaquenil against any eye-related risks specific to the situation.

May 13
A MyLupusTeam Member

I had my plaquenil replaced with a different brand and was told that it was no longer available. The replacement , quinoric, upsets my stomach snd after suffering the side effects of this for months with no alternative medicine offered to me, I decided to stop taking it. I have tried to get another brand to no avail, I’m still told that plaquenil is no longer available so, I’m now stuck without any viable medication to help my lupus symptoms!
I feel like utter crap, I feel abandoned by the doctors, like I don’t matter!
I was doing ok on the Plaquenil, no issues, so why discontinue it here? I don’t get it, I really don’t. And yes, it does make a difference if it’s a different brand!

May 14
A MyLupusTeam Member

I've been on it 30 yrs no problem. Never take more than 2 a day .

May 14
A MyLupusTeam Member

Why not stop taking Plaquenil altogether? It's a big risk to lose your vision while taking it (in my opinion)
It's like amputating 1 leg whilst stabbing the other one.
I know we all respond differently to medication despite having the same illness. But I simply could not risk losing my eyes to macular degeneration (even though I have my annual retinal screening done) so I stopped taking Plaquenil.
And as we know, the damage is irreversible

May 13
A MyLupusTeam Member

Yes - I just had my annual exam and everything looks great I was told, except for dry eye. What can be done for dry eye other than the expensive eye drops.

May 13

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