Lupus, Plaquenil, and my eyes: the whole sordid story

We all know that with plaquenil comes annual (if not semi-annual) visits to the opthamologist. It seems that the use of plaquenil can cause (although it is rare) temporary pigment changes to the macula of the retina. It's my understanding (and my direct experience) that these changes are temporary...and that with discontinued use of the medication, the changes are reversible. I can't speak to the exact percentage of people on plaquenil whose eyes are affected, but despite the fact that it is very, very low...I'm one of the people that make up that percentage.

I started plaquenil shortly after I was diagnosed, and took it for about 4 years. I was on 400mg for the majority of the time, but was on a dosage of 600mg for a period of time. In fact, I was on that higher dosage when I was taken off of it due to the pigment changes that my opthamologist noted in my annual checkup. (In fact, when my rheumatologist increased my dosage to 600mg/day, my opthamologist increased my checkups to every six months. I might have even gone every three months for a spell!)

That said, my eyes return to normal, or so says my opthamologist (I couldn't tell any difference) after I discontinued the drug, and I stayed off of the drug for about 3 years, using Cellcept in its place. With both of my doctors' blessings, I opted to go back on plaquenil in order to get pregnant in 2007 - and have been on it ever since, with no problems at all.

So as of today, my eyes are hanging in there with plaquenil. But I don't want to get too far ahead of myself, because my opthamologist has just ordered two new tests, both of which are new to me.

The first, which I had last week, is called an OCT test, or an optical coherence tomography test. It actually scans the retina and allows my opthamologist to view both the retina and the macula (the small, sensitive area of the retina that gives central vision) in 3D to determine changes or alterations in the eye. Seems like it's all the rage in regard to eye exams these glad my eyes and I could be so en vogue.

I was hopeful that this newfangled test (super common in testing for age-related macular degeneration, or AMD, but new to me) would be enough for this round of eye exams, but alas, it's not going to be that easy. (Never is when it comes to my eyes and lupus!) Turns out the eye assistant who ran the OCT test wasn't able to get a very crisp, clear picture of my eyes - my left eye in particular. Not sure why not - it's a question I have in to the doctor, but in any case, my doctor wants to step it up to another eye exam, called an ERG, or an electroretinography. I'll let you read about it here - it looks a little awkward to me, but as the literature says, I'll kick things off by "assuming a comfortable position."

Hmmm. I'll have to keep you posted on that one.

As always, feel free to chime in on this one. Always looking to hear from others who've been down this same road!


Thank you for your post- it reminded me to make an appointment with my eye doctor.
Sara Gorman said…
Glad I could be of service! Thanks for stopping by...
Jen said…
I wanted to share this short article which talks about the OCT imaging in the context of its use in cataract surgery. The technique comes in very high regards by the sounds of the article and like you said is really being touted as a great advance for eye care. My mum had the ERG a few months back as she had several emergency cornea problems. I will ask her about her experience and report back. I for one would be very interested in your follow up on the ERG because our family eye doctor wants me to have one because of the high instance of ocular problems in the family.
There were quite a few articles about Lupus on this site too.
Maria said…
I have been on plaquenil for 21 yrs., before they could tell me what the side affects were. Though my eyes were never affected, it never prevented or controlled any flare ups. After 5 months of following a completely new to me, food changes, I not only am not taking plaquenil or the 15 other drugs, 4 of which were also anti-inflammatories, which is just all plaquenil is. My levels are normal, all side affects are nil, and I haven't felt as healthy since I was 30. Hope to here from you, Maria
Lauren said…
Maria is you are out there, what food changes did you incorporate into your diet??
Hi Sarah, I am so happy to read your blog posting on July 18, 2011 about plaquenil and retina toxicity. I took plaquenil for 14 yrs and stopped in 2010 because I couldn't pass the visual field test and my ophthalmologist sent me to a retinologist and then on to the doctor who does the ERG testing. The finding was "possible early effect on the right eye". I was asked to come back in 3-6 months to do another ERG to confirm or reject the possibility of developing plaquenil toxicity, but my rheumatologist took me off the drug so I did not go back for more testing. Recently I got a second opinion on my lupus treatment as I have been in a flare since Dec. 2013 with pleurisy, and fevers. That doctor recommended plaquenil again but my rheumatologist and eye doctors say it's too much risk and little benefit as plaquenil is used to avoid flares and not good to start when you are in a flare. It's great you were able to go back on it if it helps you. Any advice for me?
Lupus for 33 years
Sara Gorman said…
Hope you can get that flare under control! No advice on the plaquenil at this point - I'm going to have to let your doctors hash this one out. I don't want to give you more conflicting info! Although be sure to let them all know you're getting differing opinions. I sat on a panel alongside a couple of doctors at a lupus seminar recently, and the subject of conflicting info came up. The doctors all said how important it is for patients to let them know when they get conflicting info. otherwise they might not ever know you're trying to juggle opinions. Not all doctors are always going agree, but they can at least provide you with add'l info so that you can make an informed decision. FYI - I just had an ERG a few weeks ago. Yuck - those things are the worst! :) thanks so much for your comments!
Thanks so much, Sara!

Lupus for 33 years

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