Hello ,
i'm talking plaquenil (hydroxychloroquine) 200 twice daily since august 2015 and now my ophthalmologist saw some changes in my retina
(abnormal macular reflex with RPE changes , he asked me to do a test called flicker ERG to assess macular function )
anyone have similar problem please ????
Hi samaka
I've not had any problems with my eyes while taking hydroxychloroquine,however it is well known that it can make changes to your eyes and why we have to have an eye test every year and specify a macular check. I have a grid at home that every once in a while I check to see if there are any breaks in the lines.
I don't know what they advised but my rheumatologist has always said I must report any changes immediately, it may mean you have to change medication.
is it reversible?
would u please send me how to check it home?? grid??
I wouldn't like to answer if its reversible as I'm not an expert. All I know is it is the only thing my rheumatologist goes on about that I get my eyes checked regular.
The grid is something I picked up at the hospitals eye department while waiting for an appointment with my mum. If you google eye macular degeneration they have it on their website, BUT this doesn't replace your eye test its only an extra thing to check from time to time if you think your eyes are not focusing so that you can get help if needed. What did your optician advice after the tests?
he just saw changes by his examination so he asked me to do the test and if major changes we have to stop plaquenil and my immunologist said it is very dangerous to be stopped !
i wander no alternative to plaquenil ?
i can't do the test so it must be stopped sooner or later what is the difference , i'' thinking to stop it ! i dont wanna loose my eyes too 😢
My understanding is if the hydroxychloroquine affects my eyes I'm to come off it immediately and contact the rheumatologist but as this hasn't been a problem so far I can't say what he would advise. Perhaps if they suggested an alternative I would ask if would cause a problem with eyes also why is the immunologist saying it's very dangerous to stop? There have been many people on here who have reported having to stop taking hydroxychloroquine because of side effects and have then been given an alternative.
I agree your eyesight is very important and you certainly don't want it to get worse. If you do stop hydroxychloroquine (which I would do) do tell whoever prescribed it as you don't want to cause other problems for yourself either.
Hi Samaka, I had to come off Hydroxychloroquine about 5 years ago due to loss of field vision in my left eye but prior to that was on Chloroquine Sulphate which is the real macoy so not sure which is the culprit. I was told not to take again even though my Rheumatologist wants me to trial Mepacrine (another antimalarial from the 1930s) but I have point blank refused due to medicines not being able to guarantee no further eye damage and said to leave off. My dad also has degenerative Macular wet and dry eye disease. Your eyesight is very important and must be monitored while taking antimalarials. I also had the grid but it did not pick up the field vision loss. Everyone is different and some people can take it for years with no problem!
so you will not take any antimalarial drugs with your rheumatologist?
i never tested the field of vision
Samaka there have been other threads of this topic you could look up for more info.
I was on this pill and other antimalarial for close to 25+ years and 2 years ago my eye sight started to do weird things that only the field test caught, not the Optometrist who I have check my eyes every year with. I saw him last week for a sudden red eye and he told me that my vision is common for someone my age, normal age thing. I had reading glasses a few years before the issue and this was not the same. I lost some confidence with him at that moment. It was more difficult to focus on words without the glasses whereas before I could manage but this kept moving around like I was blind in a spot (both eyes for me) My grid test still looks norm but my Optometrist refereed me to a Ophthalmologist when the field test looked off and have been seeing her every 6 months since with no changes, not better, or worse. She asked me to drop the antimalarial right off which my Rhumy wasn't happy with and he wanted confirmation that I couldn't take it again because unlike you I am running out of options for my Lupus nephritis. I have been on most of the pills for Lupus. My Rhumy wanted me to start right off on a new pill so I wouldn't get a flare right off. I didn't and it did flare. Now I seem to be stable again but have other crap going on with low blood counts. I think they want that option to put you back on it because we Luppies don't have a lot to chose from.
In the beginning I was told that your sight would go back to norm (30 years ago). Now I am told in many cases it doesn't. But you have to decide if you would prefer the side effect or the illness. My sight won out on that one. None of the pills we take are great but sometimes it beats the alternative. They all have nasty side effects but they kept me somewhat stable for 34 years and I think I've got a while to fight this yet. One day at a time. I hope this was more informative than depressing for you because in the end we are all different and what is working for someone doesn't work so well for someone else, every case is different and remember, you always have the last say, just keep your doctors informed with your choices. Even if they may not like it. Best of luck
Hello Samaka I was put on Hydroxchloroquine. Sulphate 400 mgs for Lupus.I felt much better physically, however eyes became very irritated & more blurred than usual. I contacted my rheumatology nurse, who spoke to a rheumatologist, (mine was on holiday), and they said total stop immediately! I was contacted by same nurse a week later who said my rheumatologist was informed & I was to stay off this medication. The nurse said if any eye issues this medicine must be stopped & can be replaced with other treatments. Have you a nurse to contact, otherwise contact your rheumatologist. By the way there were no problems coming off it, although I had only been on it 3 months plus. You need to protect your eyes as much as possible. I will never take it again.
Very best wishes, Pixiewixie
hello 
eyes problems are reversible??
can you please tell me the alternative of hydroxychloroquine to stop lupus activity? because it seems that i can't find in my country
Hi Samaka ,
There are quite a few other possible treatments for lupus. The choice of treatment will depend upon which symptoms you have the most trouble with, as certain ones work better for some things than others. You can learn more about lupus medications in our factsheet here - lupusuk.org.uk/wp-content/u...
I really can not answer that Samaka, I am sorry I do not know. The fact that you have been spotted on eye test is very important. Are you off the drug now?
Pixiewixie x
no , i did not stop it yet but my rheumatologist decreased the dosage from 400 to 200 daily , till i do the test but i can't reach the place where this test is done , so most probably i'll stop it myself ,
but reagrding your eyes problem , any better after stopping the drug?
I have problems with my eyes because of Sjogrens anyway & eye muscle problems also. The eyes had become much more blurred & hard to focus with the drug & thank goodness that is now gone. Samaka is your test place very far away. It would be good for you to get that test done as soon as possible.
Best regards Pixiewixie
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