I really enjoyed the discussion we had last year about the importance of getting your vision checked when you take Plaquenil. If you are new to Plaquenil did the prescribing doc tell you how important it is to get your eyes checked? If you reported having retinopathy from taking the med, I would love an update. And yes, I have an appointment soon, which is why I thought of this. Vision loss is difficult.
Im taking Plaquenil and my Dr didnt tell me to get my eyes checked until I asked about it. Then she was all "oh, yes, yes, very important, get eyes checked every months"
I havent had it done yet, but plan to do so soon. Reason for not getting it done yet is that I have a major phobia of the eye Dr and go into panic attacks ....... geez, I know I gotta do it, just have to work up to it.
I did have my eyes checked after this discussion came up last year and I'm glad I did. I had a baseline to compare to. I just had my eyes checked and got new glasses in July, and the optometrist saw something in the field test, and repeated it in a month. She had some concerns and sent me to a specialist yesterday. I was nervous, we were there several hours, and the doctor said I was referred cause I'm taking a fairly high dose, but it takes 4 or 5 years for the plaquenil to affect the eye. He did say that I had cataracts starting, which most people do start forming them in their 40s. He said nothing to worry about at this time, and to follow up in a year.
I just asked a rheumy about this a few days ago and she told me that there are new ophthalmology guidelines for this.
1.) Get a SDOCT test in the first year that you're taking Plaquenil. This is for a baseline to see if you are experiencing any changes later on.
2.) Get a routine yearly scan (no special tests needed).
3.) SDOCT test after 5 years and then SDOCT yearly after that.
I had my test done not long ago and had plugs put in which have helped tremendously he also tented my glasses the kind that changes with the light they have made a big difference. The only bad thing was I had to use an eye ointment for 60 nights to get rid of inflammation.
I don't remember if my rheumy told me to get my eyes checked when he first prescribed the Plaquenil, but when I last saw him, he made sure I was going every 6 months and told me how important it is. I had my baseline done when I started taking it and I go every 6 months like a good patient. Which is saying a lot because I'm stubborn with that stuff. I really like my eyeball man--he tells me the vasculature of my retina is beautiful. Nothing like a little sweet talk as he stares deep into my eyes. Haha.
I just had my eyes checked last week all is good. I am very fortunate to the dr.'s I have they seem on top of preventive medicine.
Purplebutterfly
What kind of inflammation did you have? And where? I have been on plaquenil for about 2 years and for the past 2 weeks my lower lids are swollen, red and crusty right at the lash line.
I get my eyes checked every 6 months. My eye doctor says it is rare for eye issues due to plaquenil on my dosage of plaquenil, but we check it regardless.
Three years, no problems.
Had my first eye appointment last month. Will be getting them checked every six months. The eye doctor said in the past plaquenil was prescribed in larger doses then it is now so there would be eye problems
I just went to the eye doctor a week ago and everything checked out good with me and my doctor said see you in a year. He also said back in the day people use to have trouble with Plaquenil bothering their eyes, but things have changed and it doesn't cause near as much trouble as it use to. He said not to worry but if you do experience any change to call him immediately. He gave me a expensive antibotic and two other eye drops for the redness and he said it should help when out in the sun. My left eye stay irritated a lot I diffinatley have to have my glasses on all the time. I'm not use to my glasses, I have been wearing contacts forever, my doc said I couldn't wear them any more, so I'm stuck with these darn glasses.............ugh, but nevertheless I can see!!
Good Luck "HUGS"
TN MOM I was having red itching eyes and they were really dry and it felt like pressure behind my eyes. I do not remember where he said the inflammation was after he said med for 60 days I did not here any thing else. I would have my eyes checked if it is causing you problems. I have such bad vision I can not see anything without my glasses.
If your eyes are dry, red, and itching you may have Sjogren’s syndrome which goes hand in hand with lupus. I have had it for years so I use eye drops without preservatives to keep my vision clear. Your “tears” get thick and it makes your vision blurry. I have been taking plaquenil for 30 years and still get my eyes checked once a year, visual field test, slit lamp exam, and now a special photo of the back of my eye. Sjogren’s causes your mucous membranes to not work as well. In my case the “drains” from my eyes were cauterized after the plugs kept falling out and my mouth is always dry. Sorry if this is kind of mixed up, my brain is foggy today. ~Annemarie
When I was diagnosed I was told to have my eyes examined prior to starting the Plaquenil and to have them checked every six months. So far no problems.
Ann - thank you! I actually read about Plaquenil (am starting it in two weeks) and am going to schedule an Opthalmologist apt prior to starting the med as a baseline. Thank you for sharing this! Hugs, Dee
Three years ago (last time I got my glasses updated), I tried multiple brands of contact lenses ... every single one stuck to my eyes where I would have to peel them off, even if using eyedrops before I put them in. Now, I have to go to doc to start Plaquenil. Does this sound at all like Sjogren's? I have always been thirsty all the time lol .. Just need to be ready to pull my big girl pants up if I need to before going lol... Thank you!
Annemarie said:
If your eyes are dry, red, and itching you may have Sjogren's syndrome which goes hand in hand with lupus. I have had it for years so I use eye drops without preservatives to keep my vision clear. Your "tears" get thick and it makes your vision blurry. I have been taking plaquenil for 30 years and still get my eyes checked once a year, visual field test, slit lamp exam, and now a special photo of the back of my eye. Sjogren's causes your mucous membranes to not work as well. In my case the "drains" from my eyes were cauterized after the plugs kept falling out and my mouth is always dry. Sorry if this is kind of mixed up, my brain is foggy today. ~Annemarie
It sounds like every doc is different with this. I went to the eye doc (aka Dr. Tall, Blonde and Handsome) before starting plaquenil. I didn’t know there were so many different tests that could be done to your eyes. He recommended yearly checks. He also said that rheumys get way more worried about plaquenil affecting your eyes than the ophthalmologists do as plaquenil affecting your eyes is rare. But best to be safe.
Hi
I do take plaquenil and I do have my eyes checked. I have pressure problems but I had it before I started taking plaquenil.
get your eyes checked if it has been longer than 6 months!! my eye doctor was wonderful and brilliant! I originally went to another eye doctor who suggested i see this one because my eye problem was unusual and he said that other doctor(one i did end up with) liked hard, unusual problems.
He told me and yes i did have had few eye problems, that as long as they catch it early it will be fine but if you let it go you can go blind. So i took it very seriously to this day even though he is not my doctor since i moved...which i regret.
Also if you have dry eyes and use drops, he told me two things that optometrist do not, at least in my experience or other eye doctors...do not use the kind of drops where it is in one bottle..fact you have dry eyes makes it much easier to get infections. Not using sterilized individual drops can set you up for infections. Do not wear contacts if you have dry eyes either...same reason. Contact wears get eye infections if you have dry eyes...this means your eye MD not optometrist diagnosed it with actual test, you have much higher risk of not being able to clear up any infections you get.
Also on plaquenil you should have peripheral vision test at least once a year and they should be doing color blind test....book where you try and see numbers or objects in book with different color dots.
I have lost peripheral vision and as long as i am in okay range i will stay on plaquenil. But both these can help doctors know if you have problems going on both possibly with plaquenil or other eye problems that can go along with lupus.
It is your retina not eyelids but i still have it checked out...first just by gp since just could be allergies. my brother had allergies really bother his eyes where looked like he had pink eye ..crusty , red and swollen lids...he could not open them in am till he used warm wash cloth on them when at their worst. so most likely not due to drugs but something else...still should be checked out.
I personally would hate to lose my sight as reading and colors of the world mean a lot to me. I got poison oak so bad in that i would lose my sight for few weeks and this happens at least once a year. Once i can see again it is so amazing, all the colors and just things how things have changed! It really made me appreciate my sight!
So get your eyes dialated ...i know it is pain to have someone drive you but your eyes are worth it!!