I was overdosed by 25% with 400mg a day, but I spotted it at 6 weeks and reduced my dose to 300mg.
Both UK and US have the same advice, a safe dose for eyes is a maximum of 5mg per kg (2.25lbs) of bodyweight.
In the UK, they just bung people on 400mg even though the NHS advice in general and the specific advice from the Rheumatology department I was referred to is very easy to find and very clear.
And I was overdosed in spite of already having eye issues. I was furious about it.
Frankly it's a LOT more dangerous to eyes than they tell you. Perhaps 1 in 100 people will have changes on scan within a year. One in 13 will have irreversible retina damage on scan after 5 years.
And although that doesn't immediately noticeably affect vision, the damage can continue to get worse even though the drug has been stopped. And even if it doesn't do that it gives you a head start in the damage which will be caused by getting old and is resulting in older people having worse sight loss than they need have.
I weigh 170 pounds. So 170/2.5 =68, 68x5=340. I’m on 400 mg daily but only since mid Nov 2025.
Can an optometrist detect retina damage or do I need to go to an ophthalmologist?
In any case, I’m hoping the hydroxychloroquine will calm my arthritic flare ups which is a rare side effect of keytruda.
I am experiencing the very same thing. But my right hand has had dequervain carpal tunnel and surgery on it. I have had falls that have been stopped with my right hand that suffered the weight of the fall. I am beginning to gave feet pain. I am extremely tired I take modafanilsome days to just make it through. But my job is 24/7. Im a caretaker to a quadriplegic. He is my exhusband that almost died twice in 2020. He needed someone and I was the someone that took him in. So I dont get to lay around. When I have free me time I spend it doing what I need but it doesnt come without consequence. Because when I get home I gotta pick up where I left off and catch up what someone else didnt do for him. Im exhausted. And sleep score on my watch is mad at me. 37 aint very high. And it keeps saying ATTENTION!
The bottom line is each of us is so different I took both medication‘s as I have PMR and RA and neither one of them did me any good at all. Unfortunately I do not do well with most medication’s and I’ve tried many of them. Most people have a lot of success with both of those medication‘s. I wish you good luck and best wishes going forward!!!
been on hydroxy for several years till recently , my eyes didnt like it all of a sudden, methotrexate and leflonamide my liver didnt like. Im allergic to sulfa drugs, and the new drugs ( according to the rheumatologist are expensive). so I cant afford them ( Im in Australia ) .
I was on Plaquenil for a long time to treat lupus. A few comments. It worked great. When my rheumatologist retired two years ago, I switched doctors and learned that the dosage he had prescribed was at least double what it should have been given my size and weight. The result, despite every six month eye exams, was damage to my retinas. I had to quit plaquenil which resulted in lots of fatigue, stiffness etc. I'm now on Benlysta which isn’t perfect but helping a lot.
My suggestion: be a strong advocate about dosage and get your eyes checked by a specialist who knows about this drug every six months, not annually. Finally, both my current rheumatologist and retinal specialist have told me that the patient shouldn’t be on plaquenil for more than 8-10 years, at most. I was on it for 13 years, my current doctors were truly horrified, and my former doctor never said anything or offered alternatives.
As always, educate yourself and be your own best advocate.
It’s interesting who you ask. Thankfully it turned out that when I went for a regular eye exam (new doctor), he immediately called in his retinal specialist (whose father and brother are both rheumatologists) who treats a lot of lupus patients. Between the two of them, they insisted I find another treatment. My rheumatologist said they’re eye doctors and don’t know what they’re talking about! Egos!!!
I weigh 170 pounds. So 170/2.5 =68, 68x5=340. I’m on 400 mg daily but only since mid Nov 2025.
Can an optometrist detect retina damage or do I need to go to an ophthalmologist?
In any case, I’m hoping the hydroxychloroquine will calm my arthritic flare ups which is a rare side effect of keytruda.
@mah7925
Hey there!
I have been on Plaquinil 15 years. 200mg daily . I weigh 165. I purposely started with the lowest dose, and that worked well for me . My rheumatologist feels I can drop down to 200mg every other day. So I am starting that routine on 1/1.
Absolutely best to see an ophthalmologist! I see mine twice a year. So far no issues with retina .
All the best 🙏🏻
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@mah7925
I was overdosed by 25% with 400mg a day, but I spotted it at 6 weeks and reduced my dose to 300mg.
Both UK and US have the same advice, a safe dose for eyes is a maximum of 5mg per kg (2.25lbs) of bodyweight.
In the UK, they just bung people on 400mg even though the NHS advice in general and the specific advice from the Rheumatology department I was referred to is very easy to find and very clear.
And I was overdosed in spite of already having eye issues. I was furious about it.
Frankly it's a LOT more dangerous to eyes than they tell you. Perhaps 1 in 100 people will have changes on scan within a year. One in 13 will have irreversible retina damage on scan after 5 years.
And although that doesn't immediately noticeably affect vision, the damage can continue to get worse even though the drug has been stopped. And even if it doesn't do that it gives you a head start in the damage which will be caused by getting old and is resulting in older people having worse sight loss than they need have.
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5 ReactionsI weigh 170 pounds. So 170/2.5 =68, 68x5=340. I’m on 400 mg daily but only since mid Nov 2025.
Can an optometrist detect retina damage or do I need to go to an ophthalmologist?
In any case, I’m hoping the hydroxychloroquine will calm my arthritic flare ups which is a rare side effect of keytruda.
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1 Reaction200 mg twice a day. I’m 5’2”, 120 pounds. 400 mg was probably twice what I should been taking.
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1 ReactionI am experiencing the very same thing. But my right hand has had dequervain carpal tunnel and surgery on it. I have had falls that have been stopped with my right hand that suffered the weight of the fall. I am beginning to gave feet pain. I am extremely tired I take modafanilsome days to just make it through. But my job is 24/7. Im a caretaker to a quadriplegic. He is my exhusband that almost died twice in 2020. He needed someone and I was the someone that took him in. So I dont get to lay around. When I have free me time I spend it doing what I need but it doesnt come without consequence. Because when I get home I gotta pick up where I left off and catch up what someone else didnt do for him. Im exhausted. And sleep score on my watch is mad at me. 37 aint very high. And it keeps saying ATTENTION!
-
Like -
Helpful -
Hug
3 ReactionsThe bottom line is each of us is so different I took both medication‘s as I have PMR and RA and neither one of them did me any good at all. Unfortunately I do not do well with most medication’s and I’ve tried many of them. Most people have a lot of success with both of those medication‘s. I wish you good luck and best wishes going forward!!!
-
Like -
Helpful -
Hug
2 Reactionsbeen on hydroxy for several years till recently , my eyes didnt like it all of a sudden, methotrexate and leflonamide my liver didnt like. Im allergic to sulfa drugs, and the new drugs ( according to the rheumatologist are expensive). so I cant afford them ( Im in Australia ) .
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Helpful -
Hug
2 Reactions@2penelope I have been told 5 years max for Plaquenil and get regular eye exams. I wish there were some consistency in treatments.
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2 ReactionsIt’s interesting who you ask. Thankfully it turned out that when I went for a regular eye exam (new doctor), he immediately called in his retinal specialist (whose father and brother are both rheumatologists) who treats a lot of lupus patients. Between the two of them, they insisted I find another treatment. My rheumatologist said they’re eye doctors and don’t know what they’re talking about! Egos!!!
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1 Reaction@bswpb I now go to specialists at a major university medical center. It’s a whole new world of treatment and choices!
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1 Reaction@mah7925
Hey there!
I have been on Plaquinil 15 years. 200mg daily . I weigh 165. I purposely started with the lowest dose, and that worked well for me . My rheumatologist feels I can drop down to 200mg every other day. So I am starting that routine on 1/1.
Absolutely best to see an ophthalmologist! I see mine twice a year. So far no issues with retina .
All the best 🙏🏻
-
Like -
Helpful -
Hug
5 Reactions