The most important side effects of Plaquenil is retinopathy which can lead to blindness. Because of the devastating consequences of this side effect it customary for people to have a baseline screening exam when they start Plaquenil and then routine follow-ups by whatever medical professional is allowed to diagnose retinopathy as a result of Plaquenil toxicity in your country of residence.
When I first started Plaquenil more than 30 years ago, I had to get screened every six months. In my later years the screenings have been reduced to once a year. In February of this year, it was during a routine Plaquenil screening that my cataracts were diagnosed. Cataracts are very common in people over age 60 and even more common in people with lupus. Regular eye screenings should be a part of every lupus patient's routine care.
In the US the specialist who is licensed to perform these screening is an "ophthalmologist." Links to the Guidelines for such screenings from the American Academy of Ophthalmology are shown below. There is also one link related to "opthalmological examintions in the UK." I was not able to find the screening guidelines used in other countries.
I have also included the hyperlink to an older discussion of this issue. So, I am definitely interesting in knowing how the people who were experiencing retinopathy as a result of Plaquenil toxicity are doing.
If you have additional information on the UK or any other country of residence, please feel free to add it. The purpose of the discussion is to help the newly diagnosed understand Plaquenil and to remind us old folks to keep our appointments with which ever "eye doctor" is appropriate in our place of residence, not to leave anyone out or to purposely insult anyone by using an inappropriate term for the correct practitioner in their place of residence.
I was on it for several years, until I developed an allergy to it. I saw my opthamologist every 6 months and I never had any eye issues related to the Plaquenil.
Nice discussion on helping members starting plaquenil.
Well my eye specialist knows my eyes are bad through site as you know besides dryness...saw the new rheumo who upped my plaquenil to 400mg daily in between he had a letter from the eye specialist and the drugs been reduced back down because of how my eyes am and i'm waiting for an appointment to come to see the eye speciaist again to see where we go from there.
I've been on plaquenil for 2 months and got my eyes checked and has become pictures takentaken off everything. I didn't see an ophthalmologist I just told the eye Dr why I was there and what I needed to be screened for.
Hi Ann, I was on 400 mgs of Plaquinel would see Optamoligist every 6 months. Even after two years of taking it then put back on it Was diagnosed in 2000.
I now a Retina Specialist. Angiograms on retinas. Had inflamation/bleeding so was having my retinas checked every 6 weeks.
My Rheumatologist said “No” 4 months ago to Specialists since I am now color blind & cataracts now showing up.
Not bad though.
My inflamation has gone away due to prednisone & methotexrate I inject myself with.
Hang in there. Hopefully a better drug can be found.
LOL Not sure if we all take that test that is a book with a circle of dots & a #. Its the only test I have been given by Optamologists. So Imemorized it. Its even an android app on my phone.
I live in New Jersey and just had my field of vision, pupil dilation, retina and eye exam done. I have been on plaquenil for almost a year. My exam showed an issue with my right eye in the field of vision test so my Ophthalmologist wants me back in four months to test again.
Thanks fr asking...not to good at the moment pulled the muscles in my neck through a seizure and now wearing a collar, had this before which took 3mths to heal my x-ray results for my lungs came back showing something and i'm booked in with my GP for the end of the month as he wants to talk them through with me besides going for another xray and ontop rashes coming out besides coughing my lungs up constantley.
I’ve only been on 400mg plaquenil for a month and i had to see an opthalmologist because my vision became so unbelievably blurred. Good thing the doctor said i didn’t have permanent eye damage… yet! My rheumy said i still had to be on plaquenil since she’s tapering off my prednisone intake down to 20mg from 60mg. i can’t wait to be taken off plaquenil soon.
When you go back i just hope it's not to serious and if it is the plaquenil there's not to much damage to your eyes and it's caught in time.
Hugs Terri xxx
LisAnn said:
I live in New Jersey and just had my field of vision, pupil dilation, retina and eye exam done. I have been on plaquenil for almost a year. My exam showed an issue with my right eye in the field of vision test so my Ophthalmologist wants me back in four months to test again.
You guys are scaring me about the plaquenil!!! I had the same test as lisann but nothing bad came out of it. are there other lupus medicine out there besides steroids?
I wouldn't recommend it if you already have problems with your eyes. I took it for 3 years, I know have macular degeneration and my cataracts are worse than ever! While seeing an Opthamologist! Maybe the progression could have been slower if I hadn't been taking it... Not sure!
It is really funny that this was posted this morning, because I am on Plaquenil and I just saw my eye doctor yesterday. They did the optimap and dialated my eyes. Doctor says that everything looked great! Scared me a bit though because it was taking him extra long to look things over, but I am glad he did a thorough job.
I’ve been on and off the plaquenil about five times since the early 1990s. Most recently, I’ve been on it three years now, since January of 2010. My doctors are vigilant about monitoring my eyes for plauenil damage and, thus, say i must get them checked every 3 months religiously, which i adhere to.
There's nothing to be scared of regarding meds...as some members do get side affects and other's don't, it's a risk we take if we want help with our bodies and plaquenil is a none steriod and great for helping DLE/SLE.
As long as you see an opthamologist before and i mean before taking plaquenil and he/she gives the go ahead for the drug then your ok to start it but you must have constant follow ups of every 6mths to make sure how your eyes are going.
This is why Ann as done the discussion plus to also point over these tests are needed as some rheumo's will start you on the med without thinking of sending their patients to be tested.
You guys are scaring me about the plaquenil!!! I had the same test as lisann but nothing bad came out of it. are there other lupus medicine out there besides steroids?
Nice one mate and i am pleased everything showed fine. :)
erynnraven said:
It is really funny that this was posted this morning, because I am on Plaquenil and I just saw my eye doctor yesterday. They did the optimap and dialated my eyes. Doctor says that everything looked great! Scared me a bit though because it was taking him extra long to look things over, but I am glad he did a thorough job.
Nice discussion on helping members starting plaquenil.
Well my eye specialist knows my eyes are bad through site as you know besides dryness...saw the new rheumo who upped my plaquenil to 400mg daily in between he had a letter from the eye specialist and the drugs been reduced back down because of how my eyes am and i'm waiting for an appointment to come to see the eye speciaist again to see where we go from there.