I’m puzzled.
Over the last year or so I’ve experienced a noticeable change in my eyesight. At first, I chalked it up to the “normal” deterioration that most of us experience as we age—I am, after all, 56 years old, and I’ve needed prescription eyeglasses for the last 15 years or so. I have mild astigmatism and need some help reading close-up.
So, when I saw my rheumatologist a couple of months ago, I mentioned that I hadn’t received a notice for an eye appointment in more than a year. As I’m taking plaquenil, a rheumatoid arthritis drug that can cause, as a side effect, changes in the retina that can lead to blindness, he was surprised and concerned that I hadn’t been contacted. He put a flagged referral into the computer.
What are the changes? Vertical double vision is the one that has me worried. Less upsetting (and probably more normal) is that reading small 
print is nearly impossible now. Heh. Hand me a microwave dinner, tell me to read the cooking directions on the back, and I’ll have to go looking for my drugstore reading glasses first. Now, really, this is no big deal—lots of boomers have this problem these days. My prescription glasses used to correct for it. Now they don’t.
The double vision is the scarier of the two.
I finally saw the ophthalmologist about a week ago. He checked for plaquenil-caused changes in my retinas. Holes, for instance. There were none, thank goodness. He dilated my eyes and studied them through the slitlamp. Everything looked good, he said. He had me read the eye chart, adjusted my eyeglass prescription a little and told me all was well.
“But what about the double vision?” I asked, trying not to sound plaintive.
“That’s most likely because of changes in the shape of the lens. It’s caused by aging,” he said. “Nothing to worry about.”
Right. I’m trying not to worry as I wait for my new glasses to arrive in the mail. Perhaps they’ll fix the problem. But if they don’t, what then? Do I just accept that my world now includes a ghost image slightly above and to the right of all the text I read? That all objects I see that are more than a foot away also have doubles?
My eyes also frequently feel gritty and itchy. Now, I have a grass allergy that’s most active in spring and fall, so red, burny eyes and I are old acquaintances, and that’s very likely the reason.
But for good or bad, I always look things up on the Intertubes. Sjogren’s Syndrome, a common co-morbidity of RA, also causes abnormal dryness in the eyes, mouth and other mucous membranes. It makes the eyes red and feel gritty and itchy. Can it also cause double and/or blurred vision? I don’t have a dry mouth or nasal passages.
Being practical, I bought some allergy eye drops along with some that simply lubricate the eyes. I’ve been using them both each day, the latter as needed. They make my eyes feel better, for sure, but the double vision remains the same. Nevertheless, if I have Sjogren’s—or even just dry eyes for whatever reason—shouldn’t the ophthalmologist have noticed that? Surely he’s familiar with it?
I’ll be visiting my rheumatologist again in about four weeks. By then I’ll have my new glasses. If I’m still experiencing double vision and irritated eyes, I’m going to be a lot more vocal about it than I was last time. It probably has nothing to do with the plaquenil—a good thing—but it’s definitely affecting my daily life. It’s hard to drive (at night, especially) when the yellow line in the middle of the road doubles and floats.
Anyway. I know that some of you have Sjogren’s along with RA. Was your experience before your diagnosis anything like mine?
RheumaBlog 
Hi Wren, I haven’t officially got Sjogren’s although I probably have a bit as I get VERY dry mouth, especially at night – like blotting paper – and my lips are really horrid and crinkly every morning. (YUK!) But I don’t have very dry eyes so can’t help on that score. Apparently dryness in the cornea can create double vision – which would be a part of Sjogren’s – but even if it is something else I’m sure it should be prolixly investigated and not just accepted as ‘age’. Something must be causing it – to dismiss it like that is absolutely appalling!
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I am 46 and just had my first eye appt. I have been needing readers lately. I also was concerned about my RA drugs affecting my eyes . They said I have a slight stigmatisim. I have been diagnosed with Sjorgens although I think too my Prozac and allergy meds dry my eyes out too so I am not sure I have Sjorgens. We definitely have to be our biggest advocate, since we see our changes daily.
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Hmmm, I don’t have Sojorgens so no help there. I do however have vision problems. After many tests and trips to various doctors I was diagnosed with a rare neurological disorder. If your glasses don’t fix the problem I think you really should pursue this with a vengeance. Like you, I don’t like to blow things out of proportion and often wait to address medical problems. It wasn’t until I started to lose my balance and also started to lose my hearing at times that I finally broke down and went to the doctor. Your vision problems are a health and safety issue that your doctors should address right away. It was my rheumatologist who referred me to the various doctors until I was diagnosed. My PCP was not much help at all. If I had listened to her I would still be falling over and smashing into things and have no idea why. Hope your glasses fix the problem and no other appointments are needed.
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Mary, if you don’t mind my asking….what was your final diagnosis? I am interested in this because I have “fourth nerve palsy” and have not been told a specific reason for this. I have been tested for Myasthenia Gravis and a brain tumor (both negative) and am now waiting on some other results. Thanks!
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Josi, I have Chiari Malformation. Basically my cerebellum sits below the bottom of my skull and is pressing on my spinal cord and brain stem. As it presses it stops the flow of spinal fluid to the brain. Big brain…who knew. I most likely have always had it but it was exacerbated by a car accident I had a few years ago. There are a whole host of symptoms severe headaches at the base of the neck and up the head, balance problems, vision problems, dizziness and a whole bunch of other stuff. If the blockage becomes sever, paralysis can occur. Every day is an adventure with the CM and the RA. You never know what you’re going to get. Hope you figure out what is wrong with you soon.
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Greetings Wren! I have been diagnosed with PROBABLE Sjogren’s along with my PROBABLE RA diagnosis. I say probable because it appears I’m an anomaly according to my Rheumatologist. My diagnosis of RA came after 8 years of ruling out all other disorders. Labs are abnormal, then they’re not. Clinically, as far as MRI’s and ultrasounds are concerned, I’m a clear cut RA case with synovitis, and, thankfully, no erosions to date. I do suffer from dry eyes, but, not dry mouth. My vision is often blurry, but, never double as you are describing. I’ve had the blood test for Sjogren’s and it came back negative, which, the Rheumy says is not a definitive negative. He says there is a test that would be absolute but, since it involves biopsying the inside of the lower lip, I opted to NOT have it done. The Ophthalmologist says I definitely have a dry eye issue and wanted me to consider tear duct plugs, which, I again, opted not to do. I seem to be doing quite well managing my dry eyes with over the counter drops and wearing my contacts only when necessary for convenience purposes. My eye dr says to be sure to use the gel type eye drops for severe dry eye when I go to bed at night. I believe that practice has made a huge difference in my vision and dryness. I’ve learned that the moister my eyes are, the less blurry my vision is. I, too have problems with seeing well enough at night to drive. It was suggested that I try driving with sunglasses at night and it actually helps a bit. I wish you well with pinning down your diagnosis, perhaps, if you haven’t already had the blood work for Sjogren’s you could inquire about it.
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Wren: I have Sjogren’s along with RA and I am dry EVERYWHERE. Even with medication, I’ve decided to finally give up my contacts because my eyes get so dry. And yes, your eye doctor should have noticed dry eyes if that was causing the problem. Another culprit might be cataracts, although double vision isn’t high on the list of symptoms, but you (and I) are of that age where they start to become common. A third thing that can cause vision problems is blood sugar. Have you had that checked lately? Yes, do tell your rheumy if the new glasses don’t clear up the symptoms. This is not normal. Fingers crossed that the glasses work miracles!
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Hi Wren, sorry for the eye issues. Let’s hope it’s just regular aging processes. But keep a close “eye” on it as it since Sjogren’s and inflammation of the eye called uveitis could be a culprit with RA. An ophthalmologist would know about all of these.
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Wren, I agree with Andrew and hope it’s just aging. My eyes are dry and gritty (and red) as well. I have an eye appointment coming up. Man, when I was younger I didn’t have to worry about all of these different doctor visits.
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Hi, Wren. I have dry eyes most mornings, no Dx of Sjogrens though. Hope they get to the bottom of what’s causing that double vision you’re having. – Irma
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Hi, I hope you get your eye issues resolved soon! I woke up with a headache on January 2nd and by that night my vision was double. The eye doctor noticed immediately that my eyes were extremely dry and suggested Systane Ultra OTC eye drops. I found out that I had “Fourth Nerve Palsy” which is inflammation of the 4th nerve behind my eye. This causes my eyes not to work together so everything is double. If I closed either eye I could see fine, but not if they were both open. They are better now, but not normal. My Rheumatologist has sent me to other doctors and we still don’t know what’s really wrong….we do know what’s NOT wrong. I’m not going to give up and you shouldn’t either! Keep on going back or find another doctor. As people who live with autoimmune diseases, we are in tune with our bodies and know when something is not right! Good luck!
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HI Wren, I do have Sjogrens and I have had a problem with dry eyes for a long time. I had to give up contacts years ago due to gritty eyes. Now I know it was probably Sjogrens early stages. The eye doc ran a test where they test how many tears you make. I made zero. That is a sure sign of Sjogrens. I also carry water with me everywhere due to constant dry mouth. I drink tons of water.
I have a problem with my vision being out of focus due to the dry eye. I can’t produce tears so my eyes get so dry. I have not had double vision. I have had episodes where my eyelids have gotten stuck to my eyes but that is another story.
I agree with the others. If you want something checked out, tell them. Are you getting a visual field test since you are on Plaquinel? If not make sure you get one one time a year. It is important to check for deterioration in your perifiral (sp?) vision. If you think you might have Sjogren’s ask to get the tear test. S/he can tell if you are making enough tears.
It is also a really bad allergy season since we had such a dry winter. Everyone is suffering. Hope this helps!
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Wren, my name is Nan and I have Sjogrens, I have had Sjogrens for approximatey 8 years now had it has really worn out my eyes. I left for work 2 mornings ago, and was terrorfied when “double vision struck” without notice. I spent a day and a half at the hospital and was released. I see a neurologest in a week. I am told to keep 1 closed, so I am keeping a patch over it. If this neurologest can’t help me, he is sending me to Georgetown Hospital in Washington D.C. to meet with a neurologest who might take a look inside my brain. Whoever can help be would be my Hero. So I know how field. I will tell you the outcome in the next few weeks. Nan
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Sorry for the misspelled words, right now I am blind as a bat!
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I was reading your post about your double vision issue. Thank you for posting. I also have the same problems with overlaping vertical gost vision, especially when I am reading for a wille, working in the computer, watching TV, etc. Your picture and description of the double vision is exactly what I have.
I was also taking plaquenil (I have an autoimune desease, but not RA) when the double vision started… mean while, I stoped the plaquenil because I got an AV heart block due to the medicine (when taking plaquenil my retine condition was checked and every thing was OK). But the double vision continues. I went to several oftalmologists but they could not find any thing wrong. Several denied that I had the double vision… I did a TAC to the brain, and every thing was OK. Many years ago, I was diagnosed also a Sjogrens syndrome, that I feel some times. Thats why I tryed for some months to see if the double vision would go away by using regularly eye drops, but it did not help.
Your post has several months, and I would like to ask if you had any answer to this particular condition from your doctors. Would you be so kind and answer back with any suggestions, etc.
Thank you very much and all my best wishes,
Helena
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