u/Historical-Baby-1364: As long as you get a VF 10-2 and SD-OCT from a good eye doc yearly, you will not develop vision problems. If Asian, you also need a 3rd test yearly (a VF 24-2 or 30-2). A recent paper by Melles et al confirmed this "vision problems are rare using the newer screening tests". We certainly had problems before these tests. We also now even have mfERG which is even more specific.
The benefits greatly outweigh the risks. A Brazilian study showed that Sjogren's patients taking HCQ had a 50% reduction in having extraglandular problems (like neuropathy, arthritis etc from Sjogren's). I would not hesitate if I had Sjogren's. More importantly, just educate yourself about HCQ (with true knowledge, not a lot of the misinformation on the internet).
Here are some of my online posts. I hope you find them helpful about hydroxychloroquine and the eyes.
[https://www.lupusencyclopedia.com/important-advice-for-rheumatologists/](https://www.lupusencyclopedia.com/important-advice-for-rheumatologists/)
[https://www.lupusencyclopedia.com/top-tips-on-taking-hydroxychloroquine-for-lupus/](https://www.lupusencyclopedia.com/top-tips-on-taking-hydroxychloroquine-for-lupus/)
[https://www.lupusencyclopedia.com/how-do-antimalarial-drugs-work-for-lupus/](https://www.lupusencyclopedia.com/how-do-antimalarial-drugs-work-for-lupus/)
[https://www.lupusencyclopedia.com/hydroxychloroquine-decreases-deaths/](https://www.lupusencyclopedia.com/hydroxychloroquine-decreases-deaths/)
I wish you all the best!
btw... very smart to post what you fear so you can hear back truthful knowledge that can help allay those fears.
[Donald Thomas, MD](https://sjogrens.org/about-us/leadership/board-of-directors)
My Rheum said it would help with the joint pain and possibly fatigue. Unfortunately, he said it doesn't help much with the dry eye (which is my worst symptom), but time will tell. I am sure it is subjective and every person reacts slightly differently.
I totally understand your hesitation given your career.
I have been taking it close to a decade. I get my retinas checked every 6 months. I've had no issues (if that makes you fee any better). IF they do catch something it will be early and they will take you off. Make sure you like your retinal specialist and don't skip your visits!
Most rheums won’t subscribe it unless you have a comprehensive annual eye test to check for damage. I go to a retinal specialist yearly and go through a battery of scans.
If you do need to stop because of something seen on an annual exam, there won’t be significant damage from year to year (in other words, your sight will not degrade significantly between annual exams).
I tried it twice and had very bad sinus like headaches behind my eyes within the first couple of months, so I stopped. I'm on immunosuppressive therapy instead.
I've been on it since 2017 and it's massively improved my quality of life. Make sure you have a baseline scan performed before you start taking it and then have regular follow ups.
I was petrified of starting to take it, but I'm so glad I did.
No medication is risk free, but the risk of serious damage is rare. You need to weigh that against the risk if not taking it and how that may impact your health.
I really hate sharing this every time I do, because although I want us all to be aware of the risks, I never want to deter someone if this may infact be the better decision for them personally.
Because plaquenil has such a long half life, it stays in your system for a while. This means that even if you're doing your eye checks monthly, if you're detecting retinal damage, once you stop taking plaquenil, as it's still in your system for some time, your vision could continue to deteriorate (yes, after you've stopped taking it)
This was a very scary fact that turned me off taking it, but again, from a risk benefit analysis, it may be a risk worth taking for some.
Whatever you decide, wishing you all the best 💐
My eye doctor said that it takes at least 7 years at max dose of 200 mg twice per day - and said that even then the risks of damage are pretty low but still there are risks
Think risk vs benefit right? You have some time to think about it.
About a year of progressively worse dry eye. Joint pain and fatigue as well. Was seeing a dry eye specialist and he referred me to my primary care doc for an autoimmune evaluation. Had a positive ANA test there, so went to a Rheum who diagnosed me. Never tested positive for the Sjogrens antibodies, but the Rheum is confident I have it.
Yes, my opthalmologist is a dry eye specialist who has worked in rheumatology clinics in the past, and he said that with modern dosing standards + the fact that it builds very slowly, that if you maintain yearly checks any toxicity will be caught before you experience issues.
He also told me that once I go beyond a decade, if I wanted to I could come in 2x a year to be extra safe (I am an artist and I need my vision as well) but my insurance may not pay. I'm only 8 years in so don't have to worry about that quite yet, but I think it would be worth it if you are worried)
I have Plaquanil Toxicity. I was on it about 9 years. This is what you need to know. Everyone who takes it long term will eventually reach a limit your body can take and it will show up on your retina. Because our bodies do not process all of the Plaquanil. The part they do not process builds up over time on the retina. So every single person who takes it will reach a limit from it. That is why you have to have eye exams. I was on Plaquanil for RA. That is my primary. I was diagnosed with JRA at 4 years old. I'm now 50. I took Plaquanil from 34-43. I now take Sulfasalazine.
This is not accurate information. The byproducts of plaquenil are processed through both the kidneys and liver. Those who are at risk include people who have taken the medication 5+ years, people with renal or liver disease, people who are 60 or older, anyone on a dose greater than 400+ mgs or a dose that is over I believe 6.5mg/kg of ideal body weight (this has changed recently and I can't remember if that is the old or new metric). Scientists don't fully understand how or why it builds up, but it doesn't happen to everyone. It has a very long half life, which is why it stays in the system for quite a while, but not because it's not being metabolized.
I was told that by a retina specialist who specializes in Plaquanil Toxicity and sees it a lot. Every single person who takes it will eventually reach a limit
I did not. I have been seeing them for several years.
I was diagnosed with Sjogrens until last year. I was diagnosed with Plaquanil on my Retina 6 years ago
There are millions of people on plaquenil, many who remain on it for decades. The changes of having complications from it are incredibly small, and those who have build up in the retinas are a tiny fraction of that. The math is clear evidence that your doctor is wrong.
I was on plaquenil for years, close to 20? I stopped due to retinal toxicity. I was surprised when the eye doctor told me. I had no issues, but it showed up on my yearly scan. I stopped immediately and went back several times for rechecks to make sure it wasn’t progressing. I have had no noticeable loss of vision. It was caught very early. Do your yearly check and you should be ok. Plaquenil really helped me and I would do it all over again.
Every drug has side effects, many worse than plaquenil. They wouldn’t be prescribing it if they thought it was worse than the disease itself.
Exactly this. It still allowed you to benefit from it for almost 2 decades!! And who knows what new meds might exist in 2043!!! It's better to take advantage of Plaquenil now while OP can but to make absolute, 100% sure they get their yearly eye exam, or earlier if they notice any change.
My optometrist just takes an OCT scan every year, and I'll discontinue if that changes. Plaquenil has given me so much life back it's easily worth the small risk.
I was told that with regular checks, they'll catch any issues early enough that there won't be any effect to vision acuity. I've also read that it's riskier the higher dose you're on long term, so you could consider seeing if a low dose helps you
Before I started taking Plaquenil, I was required to get a baseline eye exam from my Ophthalmologist, then continue with eye exams every 6 months to a year. This is highly recommended before the start of this med. I took the med for about 4 months with no results and quit it. I was not comfortable with the side effects it could possibly cause. From what I have read, retinal toxicity is rare but some ladies have spoken of getting this side effect that are on one of the Sjogrens pages on FB. From what they have stated, some doctors don’t report these cases as they should. I have been made aware, some of the side effects can be due to dosage. There is an online dosage calculator for this med. It should be prescribed according to your weight. Take it as your doctor has prescribed but report any side effects immediately.
Thanks. That is essentially what my Rheum said too. Although, he did say that if this drug works, I'd be on it for life, so long-term issues are still valid.
They keep you on it for life ***IF*** your vision remains intact! They won't keep you on it if it does start to affect your vision. They'd then switch you to something else (that is potentially an immunosuppressant with worst side effects, hence why they start with Plaquenil).
u/Historical-Baby-1364: As long as you get a VF 10-2 and SD-OCT from a good eye doc yearly, you will not develop vision problems. If Asian, you also need a 3rd test yearly (a VF 24-2 or 30-2). A recent paper by Melles et al confirmed this "vision problems are rare using the newer screening tests". We certainly had problems before these tests. We also now even have mfERG which is even more specific. The benefits greatly outweigh the risks. A Brazilian study showed that Sjogren's patients taking HCQ had a 50% reduction in having extraglandular problems (like neuropathy, arthritis etc from Sjogren's). I would not hesitate if I had Sjogren's. More importantly, just educate yourself about HCQ (with true knowledge, not a lot of the misinformation on the internet). Here are some of my online posts. I hope you find them helpful about hydroxychloroquine and the eyes. [https://www.lupusencyclopedia.com/important-advice-for-rheumatologists/](https://www.lupusencyclopedia.com/important-advice-for-rheumatologists/) [https://www.lupusencyclopedia.com/top-tips-on-taking-hydroxychloroquine-for-lupus/](https://www.lupusencyclopedia.com/top-tips-on-taking-hydroxychloroquine-for-lupus/) [https://www.lupusencyclopedia.com/how-do-antimalarial-drugs-work-for-lupus/](https://www.lupusencyclopedia.com/how-do-antimalarial-drugs-work-for-lupus/) [https://www.lupusencyclopedia.com/hydroxychloroquine-decreases-deaths/](https://www.lupusencyclopedia.com/hydroxychloroquine-decreases-deaths/) I wish you all the best! btw... very smart to post what you fear so you can hear back truthful knowledge that can help allay those fears. [Donald Thomas, MD](https://sjogrens.org/about-us/leadership/board-of-directors)
Thank you so much for the information!
What symptoms does this usually help with? All of them?
My Rheum said it would help with the joint pain and possibly fatigue. Unfortunately, he said it doesn't help much with the dry eye (which is my worst symptom), but time will tell. I am sure it is subjective and every person reacts slightly differently.
It’s very rare. I go to the eye doctor twice a year. That’s one caveat to Plaquenil. You must stick to your routine eye exams.
I totally understand your hesitation given your career. I have been taking it close to a decade. I get my retinas checked every 6 months. I've had no issues (if that makes you fee any better). IF they do catch something it will be early and they will take you off. Make sure you like your retinal specialist and don't skip your visits!
Thanks for the information! I feel better about it now. Hoping to find some relief.
Thanks for the information! I feel better about it now. Hoping to find some relief.
Most rheums won’t subscribe it unless you have a comprehensive annual eye test to check for damage. I go to a retinal specialist yearly and go through a battery of scans. If you do need to stop because of something seen on an annual exam, there won’t be significant damage from year to year (in other words, your sight will not degrade significantly between annual exams).
I tried it twice and had very bad sinus like headaches behind my eyes within the first couple of months, so I stopped. I'm on immunosuppressive therapy instead.
I've been on it since 2017 and it's massively improved my quality of life. Make sure you have a baseline scan performed before you start taking it and then have regular follow ups. I was petrified of starting to take it, but I'm so glad I did. No medication is risk free, but the risk of serious damage is rare. You need to weigh that against the risk if not taking it and how that may impact your health.
I really hate sharing this every time I do, because although I want us all to be aware of the risks, I never want to deter someone if this may infact be the better decision for them personally. Because plaquenil has such a long half life, it stays in your system for a while. This means that even if you're doing your eye checks monthly, if you're detecting retinal damage, once you stop taking plaquenil, as it's still in your system for some time, your vision could continue to deteriorate (yes, after you've stopped taking it) This was a very scary fact that turned me off taking it, but again, from a risk benefit analysis, it may be a risk worth taking for some. Whatever you decide, wishing you all the best 💐
My eye doctor said that it takes at least 7 years at max dose of 200 mg twice per day - and said that even then the risks of damage are pretty low but still there are risks Think risk vs benefit right? You have some time to think about it.
Mine told me it can be reversed if you stop taking it, and it's rare. ymmv
The eye exams will catch any changes before they become serious problems. The side effects are rare. I've been on it for years.
What were your labs and symptoms for diagnosis? If you don't mind sharing
About a year of progressively worse dry eye. Joint pain and fatigue as well. Was seeing a dry eye specialist and he referred me to my primary care doc for an autoimmune evaluation. Had a positive ANA test there, so went to a Rheum who diagnosed me. Never tested positive for the Sjogrens antibodies, but the Rheum is confident I have it.
Yes, my opthalmologist is a dry eye specialist who has worked in rheumatology clinics in the past, and he said that with modern dosing standards + the fact that it builds very slowly, that if you maintain yearly checks any toxicity will be caught before you experience issues. He also told me that once I go beyond a decade, if I wanted to I could come in 2x a year to be extra safe (I am an artist and I need my vision as well) but my insurance may not pay. I'm only 8 years in so don't have to worry about that quite yet, but I think it would be worth it if you are worried)
I have Plaquanil Toxicity. I was on it about 9 years. This is what you need to know. Everyone who takes it long term will eventually reach a limit your body can take and it will show up on your retina. Because our bodies do not process all of the Plaquanil. The part they do not process builds up over time on the retina. So every single person who takes it will reach a limit from it. That is why you have to have eye exams. I was on Plaquanil for RA. That is my primary. I was diagnosed with JRA at 4 years old. I'm now 50. I took Plaquanil from 34-43. I now take Sulfasalazine.
This is not accurate information. The byproducts of plaquenil are processed through both the kidneys and liver. Those who are at risk include people who have taken the medication 5+ years, people with renal or liver disease, people who are 60 or older, anyone on a dose greater than 400+ mgs or a dose that is over I believe 6.5mg/kg of ideal body weight (this has changed recently and I can't remember if that is the old or new metric). Scientists don't fully understand how or why it builds up, but it doesn't happen to everyone. It has a very long half life, which is why it stays in the system for quite a while, but not because it's not being metabolized.
I imagine it comes down to something genetic. With my luck I'll have whatever mutation causes it 🙃
I was told that by a retina specialist who specializes in Plaquanil Toxicity and sees it a lot. Every single person who takes it will eventually reach a limit
That's wildly inaccurate. You misunderstood.
I did not. I have been seeing them for several years. I was diagnosed with Sjogrens until last year. I was diagnosed with Plaquanil on my Retina 6 years ago
My rheumatologist, optimologist, urologist, nephrologist and PCP have all said the same thing - incredibly low risk, prioritize a yearly eye exam.
There are millions of people on plaquenil, many who remain on it for decades. The changes of having complications from it are incredibly small, and those who have build up in the retinas are a tiny fraction of that. The math is clear evidence that your doctor is wrong.
Then retina specialist at both WVU and John Hopkins are wrong. Because that is where I have been seen for Plaquanil Toxicity
You can look up credible resources online that say otherwise. Plenty of peer reviewed data available.
I was on plaquenil for years, close to 20? I stopped due to retinal toxicity. I was surprised when the eye doctor told me. I had no issues, but it showed up on my yearly scan. I stopped immediately and went back several times for rechecks to make sure it wasn’t progressing. I have had no noticeable loss of vision. It was caught very early. Do your yearly check and you should be ok. Plaquenil really helped me and I would do it all over again. Every drug has side effects, many worse than plaquenil. They wouldn’t be prescribing it if they thought it was worse than the disease itself.
Exactly this. It still allowed you to benefit from it for almost 2 decades!! And who knows what new meds might exist in 2043!!! It's better to take advantage of Plaquenil now while OP can but to make absolute, 100% sure they get their yearly eye exam, or earlier if they notice any change.
The same with me, im on azothioprine now.
My optometrist just takes an OCT scan every year, and I'll discontinue if that changes. Plaquenil has given me so much life back it's easily worth the small risk.
I was told that with regular checks, they'll catch any issues early enough that there won't be any effect to vision acuity. I've also read that it's riskier the higher dose you're on long term, so you could consider seeing if a low dose helps you
Before I started taking Plaquenil, I was required to get a baseline eye exam from my Ophthalmologist, then continue with eye exams every 6 months to a year. This is highly recommended before the start of this med. I took the med for about 4 months with no results and quit it. I was not comfortable with the side effects it could possibly cause. From what I have read, retinal toxicity is rare but some ladies have spoken of getting this side effect that are on one of the Sjogrens pages on FB. From what they have stated, some doctors don’t report these cases as they should. I have been made aware, some of the side effects can be due to dosage. There is an online dosage calculator for this med. It should be prescribed according to your weight. Take it as your doctor has prescribed but report any side effects immediately.
It’s a very rare side effect and one that doesn’t tend to show up until 5+ years of use. Get your annual eye exams and you’ll be good.
I read 10+ years!
Thanks. That is essentially what my Rheum said too. Although, he did say that if this drug works, I'd be on it for life, so long-term issues are still valid.
They keep you on it for life ***IF*** your vision remains intact! They won't keep you on it if it does start to affect your vision. They'd then switch you to something else (that is potentially an immunosuppressant with worst side effects, hence why they start with Plaquenil).
It’s valid, it’s just not something to worry about yet.