Back in the dark ages, when I first started taking hydroxychloroquine, I was referred to an ophthalmologist for a pre-hydroxychloroquine screening exam. My rheumatologist would not write the prescription before I had the exam. After that I was required to see the ophthalmologist twice a year. The Lupus Center at Johns Hopkins still advises lupus patients to see an ophthalmologist for a screening exam before starting the medication and to have twice yearly follow-up visits.
Did you have a screening exam before you started taking Plaquenil? How often must you see the ophthalmologist for a screening? Does the timing of your screenings fit or exceed the guidelines (which are minimums)?
Wow, I took it for 3 years. With my first appt. at a rheumy last Monday he took me off of it. Also, he said I have a light case of lupus. Most of my muscle pain is from my lack of sleep. He put me on Tramodol, and Doxepin and I haven't felt better in years. Now to get use to my cpap machine. I've had it for 5 years but due to my husband not liking me wearing it. Yes I was wimpy... WAS. Now it's time to take care of myself! So with 4 new prescriptions I am on my way!
I was diagnosed 13 years ago and put on hydroxychloroquine right away. I saw an ophthalmologist at the Ivey Eye Institute in London, ON within a few months but not before starting. I saw the ophtho twice a year for a couple of years and then he sent me to my optometrist for the testing as she had the equipment and skill necessary to interpret the score. I saw her twice a year for another year or two and then annually. I now live in a small town in northern Manitoba where there is no ophtho. Nearest one is nearly 400 miles away. Fortunately the optometrists in town have the equipment and my opto has skill and expertise to interpret the results and do a very through annual examination where he dilates my pupils and shine some very bright light into my eyeball to visually examine the retina. If I think there is any kind of problem with my eyes I can get in very quickly.
I started it without being referred to an exam, but I had already had my own ophthalmology visit within 3 months before starting, so I wasn’t concerned. Even though I knew about the need to get a “baseline”, I essentially already have one. I don’t, however, have coverage for more than one eye exam per calendar year… That means I can get one in Jan, just after my 6-month mark… But what about going forward? Perhaps my rheum/ophth docs can petition for medical necessity?
I had been tabling this issue for later (already have enough going on keeping up with 5 other docs), but now that you bring it up… I’d love some tips! Thanks, Ann! And all responders!
I have been on plaquenil since being diagnosed with lupus in 2002, I just had a detached retna in April 2012., the doctors say that it has nothing to do with my lupus, the only explanation that I ever get is that it is something that happens to a lot of near sighted people. I have been seeing a opthamologist since I started taking plaquenil annually that examines my eyes and give me a humphrey field test, it seems to me that he should've been able to catch the problem that I am having with my retna and somehow been able to prevent the severity of the retna being detached which would've prevented me from having to have a surgery, and maybe only needing laser surgery, as well as what I am going through with my vision not being clear yet!
I have been taking plaquenil for about 15 years now, I was told by my ophthalmologist that once every two years was sufficient for the 200mg dose twice a day. I have been very lazy, because it is going on three years, so I guest I should make an appointment. I have not had any problems with my vision except I am still farsighted, I have had that problem for about 20 years. the bi-fogle's takes care of that.
YES see Opthalmologist to obtain baseline eye health reading. Opthomologist will also give opinion of how Plaquenil will effect YOUR vision & recommend future screening schedule.
Hey if you can possibly afford it do it. I mean its your vision. (just went to the Optho this week for first time).
I have been on hydroxychloroquine for several years and was advised that I must see the eye dr twice a year. The reason is that it can effect your eye sight but if caught early and you cease to take the meds your eyes will get better. So yes I do my exams as requested.
I did not have a baseline screening prior to starting Plaquenil because I regularly saw an optha. After starting the drug I had biannual exams. Changes were noted about 5 years in and I was taken off the meds. Fortunately my lupus is mostly in the mild end of the spectrum with significant flares less frequent since retiring in my 50's.
I was going to finish the rest of my bottle. I will stop it like the Dr. said. Too afraid to damage my eyes. Hopefully his other ideas will help with the pain. One day at a time!
I've been put on Plaquenil twice, both times long term - 400 mg per day. I had to have a pre-screening both times and I am required to have 6 month exams with the Ophthalmologist to continue with the medication.
My Rheumy made an exception for me while I was waiting for approval for my SSDI and had no money or insurance to pay for the examination. I am overdue for one now though and will likely schedule it as a follow-up to my upcoming appointment with my Rheumy.
I think these exams are extremely important - while a problem is rare, I just noted ward0818's reply! I do not know what the long term effects are Ward, but I hope your vision is okay...
I take 400mg plaquenil daily and get annual eye exams, i am required to bring the results to my Rheumatologist evey time. So far so good, had 2 exams so far, next exam is actually next month, not looking forward to having my eyes dialated again but I have to do it.
When I was taking Plaquenil I saw an opthalmologist once a yr. My ophthalmogist suggested I stop taking it as I had been on it for yrs. I was having vision problems but I have cataracts from Prednisone which I had many pulsed steroids 1,000 Mg IV for several yrs
Well for a start of the muscles at the back of my eyes are damaged through years of taking Tegretol besides having slant vision (looking straight but can still see things at the side of me)....when i first started taking the plaquenil i was sent to my opticians first before seeing a opthamologist.
The readings from that alone came back as.
1. VAs aapear to be below normal for age.
2. Pigmentary changes at maculae noted with direct opthalmoscopy.
3.Visual field defects.
The i saw the opthomologist who said i could still take the plaquenil and since then in 2yrs my eye sight is worse now and my right eye is worse besides dry eyes.
I've just got my GP to put me back on the plaquenil till i see this new rheumo, whenever the appointment drops through the door for a start off.
The opticians keep checking my eyes every 12mths for cataracts like yourself or sugar because of my moms family history of them, like what you've gone through yourself.
I have to wear glasses for long and short sightedness and the ones out side are tinted for light because of my muscles.
Ann i laugh sometimes to myself because i'm only missing the nail on my coffin.lol
Love Terri xxx
Ann A. said:
Dear Tez,
Thanks for your response. I am so sorry that you have so many problems with your vision. I hope that some of them are correctable. I wish you the very best sight that you can have.
Tez_20 said:
Well for a start of the muscles at the back of my eyes are damaged through years of taking Tegretol besides having slant vision (looking straight but can still see things at the side of me)....when i first started taking the plaquenil i was sent to my opticians first before seeing a opthamologist.
The readings from that alone came back as.
1. VAs aapear to be below normal for age.
2. Pigmentary changes at maculae noted with direct opthalmoscopy.
3.Visual field defects.
The i saw the opthomologist who said i could still take the plaquenil and since then in 2yrs my eye sight is worse now and my right eye is worse besides dry eyes.
Terri - I am so sorry to hear of the vision problems that you are having, some of which sound like they could be related to the Plaquenil.
There are other responders here who have had other vision issues as well. I tell you what... I am READY to get in there for my updated exam!!
Ann - Thank you for this informative and helpful discussion/article! Not only has your information been helpful, but the responders information has also added valuable information! Very helpful for me for sure!
Thanks -
Ang
Tez_20 said:
Hello Ann and thank you,
I've just got my GP to put me back on the plaquenil till i see this new rheumo, whenever the appointment drops through the door for a start off.
The opticians keep checking my eyes every 12mths for cataracts like yourself or sugar because of my moms family history of them, like what you've gone through yourself.
I have to wear glasses for long and short sightedness and the ones out side are tinted for light because of my muscles.
Ann i laugh sometimes to myself because i'm only missing the nail on my coffin.lol
Love Terri xxx
Ann A. said:
Dear Tez,
Thanks for your response. I am so sorry that you have so many problems with your vision. I hope that some of them are correctable. I wish you the very best sight that you can have.
Tez_20 said:
Well for a start of the muscles at the back of my eyes are damaged through years of taking Tegretol besides having slant vision (looking straight but can still see things at the side of me)....when i first started taking the plaquenil i was sent to my opticians first before seeing a opthamologist.
The readings from that alone came back as.
1. VAs aapear to be below normal for age.
2. Pigmentary changes at maculae noted with direct opthalmoscopy.
3.Visual field defects.
The i saw the opthomologist who said i could still take the plaquenil and since then in 2yrs my eye sight is worse now and my right eye is worse besides dry eyes.
Don't get running there:).... incase they find something.
Ang all the things they found with my eyes was before i ever took the plaquenil in the first place but i do know that Tegretol have alot to answer for because i've never known a drug cause so many issues on a person similar as soft as it sounds like Lupus does.
