View Full Version : Lupus and vision problems

01-22-2011, 03:56 AM
Kim and I were talking about our eye sight. *I started to wonder if anyone else has vision problems due to the Lupus.
I won't discuss Kim's situation; as for me the vitrious has detached from the retina in both eyes causing the beginning of problems. *When it happened to the second eye 2 months ago my eye hemoraged near the optic nerve. It's ok now. *My vision is starting to give me concerns now for focusing. *I can see, but the clarity and sharpness are slightly off. I know that the plaquinel does things to the eyes, but the first detachment happened before I started taking it.

Anyway if there is anyone else who would like to share. I think it would be interesting and informative for the rest.
Nonna really twitching away

01-22-2011, 08:05 AM
Hey Nonna,

You are going to the eye doctor and having the plaquinel eye tests aren't you? I am sure the answer is yes but I had to check.

My eyes are getting so much worse. I need to get back to the eye doctor because I know that just in the last few months my glasses prescription has changed but I can't right now. What we all need to remember is that Lupus is simply the body attacking itself and it can attack anywhere. The following information was found on the lupus.org website and I thought it would be helpful.

The Eyes

Systemic lupus is a chronic autoimmune disease that can affect any part of the body, including the eyes. Lupus most often affects the heart, joints, skin, lungs, blood vessels, kidneys and central nervous system (CNS). The clinical course is unpredictable and is characterized by periods of remissions and flares, which may be acute or chronic.

The effects lupus may have in and around the eyes include2:

* Changes in the skin around the eyelids
* Dry eyes
* Inflammation of the white outer layer of the eyeball (scleritis)
* Blood vessel changes in the retina -- the light-sensitive lining inside the eye
* Damage to nerves in the muscles controlling eye movement and the nerves affecting vision

Involvement of the skin around the eyelids

* This is most often related to the discoid lupus erythematosus3 form of cutaneous lupus.
* The skin lesion is well-defined, slightly raised, scaly, and misformed (atrophic).
* There are typically no symptoms, but occasional burning and itching may occur.
* Scarring may result in deformities along the edge of the eyelids.

Dry eyes

* Approximately 20 percent of people with lupus also have Sjögren’s syndrome, a condition in which the tear glands do not produce sufficient tears to lubricate and nourish the eye.
* Typical symptoms are irritated, gritty, scratchy, or burning eyes, a feeling of something in the eyes, excess watering, and blurred vision.
* Advanced cases of dry eyes may result in damage to the front surface of the eye and impaired vision.
* The dry eye that is seen in lupus cannot be distinguished from other dry eye conditions.2,4


* This painful red eye condition is caused by inflammation in the white scleral (outer) layer of the eye.
* Scleritis occurs in approximately one percent of people with lupus and may be the first sign of the disease.

Retinal Vascular Lesions (blood vessel changes in the retina)

* This is the most common form of eye involvement in lupus.2
* The occurrence in lupus can vary depending on the population studied. The lowest incidence reported is three percent, seen in outpatient clinics, and the highest is 28 percent in those hospitalized for lupus-related complications.2
* The presence of these lesions seems to correlate with active disease.
* Retinal blood vessel changes are due to lack of adequate blood supply to this delicate tissue, and may cause decreased vision ranging from mild to severe. For individuals with severe retinal vascular disease, the prognosis for vision is poor.
* Retinal vein occlusions (blockages) and retinal artery occlusions have been reported, but these complications are rare and seem to be more related with CNS lupus.
* The choroidal layer of the eye -- the nourishing tissue underneath the retina -- can also be affected by lupus, but this is very uncommon. This involvement can appear as excess fluid between the retinal layers. There is an association between lupus choroidal disease and blood vessel disease in the rest of the body, which may be related to kidney disease and blood vessel disease complications seen in lupus.

Neuro-ophthalmic Involvement (nerve damage)

* Cranial nerve palsies can result in double vision, poor eye movement and alignment, poor pupil reflexes, and droopy eyelids.
* Lupus optic neuropathy occurs in one-two percent of people with lupus.2 Slow progressive vision loss also can result in more rapid loss of vision from lupus optic neuropathy.6
* Damage to the visual nerve fibers in the brain may cause hallucination and loss of peripheral vision and/or central vision.

In addition, some of the medications used in the treatment of lupus may have ocular side effects. For example, hydroxychloroquine (Plaquenil®) can cause retinal toxicity if taken in large doses over time. Regular annual comprehensive eye examinations are recommended by the American Optometric Association for people with lupus, especially for anyone taking Plaquenil.

01-22-2011, 08:44 AM
I need to get to the eye doctor as well, but just haven't felt up to it lately. :) My vision has gotten considerably worse, and I don't take the Plaquenil. My peripherel vision has decreased, there are times that I just can't get my eyes to stay focused, and even with my glasses things are blurry. I went last year and had them checked and he said then that they hadn't really changed enough to warrant a new prescription. I went from having fantastic eyesight to bi-focals w/in a year of being sick. :(

01-22-2011, 09:29 AM
I have gone from seeing the eye doctor once a year to every four-six months, my vision is constantly changing. I'd like to hear if anyone else besides Lauren and me(I) have problems focusing

01-22-2011, 01:27 PM
Thanks for the info tgal. My vision has been changing lately and I need an exam. I have trouble focusing and there seems to be an area of vision that never comes into complete focus. I've also become very light sensitive and wear sunglasses even on cloudy days. Does anyone know if Medicare covers eye exams when there's a diagnosis of Lupus?

01-22-2011, 06:08 PM
I see my ophthalmologist every six months because I take Plaquenil. So far, he hasn't been concerned about anything.
I am noticing problems with focusing lately. I have to blink a couple of times before I can focus in on reading something at a distance.
I intend to ask the doc about it next month - the eye doc is the one doc that I have who listens to me lately!

I'm taking Restasis for the dry eyes, and that stuff is wonderful!

01-23-2011, 02:08 PM
It seems everyone is having focus problems

I am definitely going to tell my eye doctor about it

01-23-2011, 06:05 PM
OK, once Marla said that she has to blink a few times to get things in focus my brain fog lifted enough for me to get it. Yes, I have this same problem with my eyes. I stay light headed and dizzy so I just attributed the vision issue to that.

01-23-2011, 06:54 PM
I also have a lot more floaters this last year. Could be age related since I turned 60! We've been warned all our life about issues when we get "over-the-hill", but no one ever said anything about it being a cliff!!

01-23-2011, 07:05 PM
I also have a lot more floaters this last year. Could be age related since I turned 60! We've been warned all our life about issues when we get "over-the-hill", but no one ever said anything about it being a cliff!!

the eye doctor told me the floaters come from the vitreous. He described it as jello. when you are young the vitreous is like fresh jello; the older you get the vitreous get to be like jello that has turned to rubber. Mine pulled away(detached) from the retina. This last time is hemorrhaged and now I have to look through a field of fine floaters..... the penalties of getting old as you said.

01-23-2011, 10:32 PM
I was diagnosed in December 2008 with SLE and secondary Sjogren's-my GI system and mouth being impacted the most. In early 2009, I was prescribed my first pair of glasses, for distance, and am now wearing bifocals with the prescription being changed each time I've gone in for an exam. My vision is especially blurry upon awakening. The opthamologist says this is because as we age our eyes get drier. The opthamologist doesn't feel my eyes are "that" dry. I would have to agree that, generally speaking, they aren't. However, after heavy computer use they are extremely tired and burn like mad.

Because I'm light sensitive, have blue eyes and prone to migraines, I invested in prescription sunglasses with UV protection. They are for distance only as bifocals would have been way too expensive. They are rather large and wrap around my eyes to block the wind to prevent drying of the eyes. They are one of the best investments I've made in my health/comfort. They have made such a difference as the glare of the sun coming through the clouds can trigger a migraine.

I will be returning to UCSF for the SICCA Study next month and look forward to what their tests reveal after two years of being on Plaquenil, although I get regular eye exams, the testing through the study is second to none and consistently done under strict guidelines.

I don't believe my vision changes are age related. I just turned 46 and had perfect vision until 44 and suddenly I'm wearing glasses and am changing prescriptions every time I see the eye doctor? Even my DH, who has worn glasses for years and is 5 years my senior hasn't had a change in his RX in more than 5 years.

I really don't think it's Plaquenil either, but I'm not the expert. This is all very new to me.

Thanks for starting the thread, Nonna. It's interesting to read others' experiences and makes me wonder about the correlation with AI diseases.

01-30-2011, 06:16 AM
I just been wondering if anyone has ever lost their sight because of this. I get premonitions and I feel like i'm preparing to be blind. I don't like this feeling and just needed to voice it. Call it venting if you want. I think I'm experiencing fear about it; which is very unusual for me.

01-30-2011, 07:46 AM
Hi Everyone.

I havnt had any trouble with my plaq. affecting my eyes...BUT.....
When I was hospitalized for a huge flair, the pumped me full of steroids and as a result of that, my blood sugar had risen uncontrollably and they were giving me shots of insulin a number of times daily to bring it down. As a result of such a high gluclose level, it was building up on my retena and caused my vision to be horribly blurred for about two weeks. It was a side effect from the pred, and once I stoped the super high dose, my blood sugar and vision returned to normal. It was totally weird and scary. Has this ever happened to anyone else?


01-30-2011, 11:24 AM
I never thought it could be related to the pred. that's something else to check on. I'm going to ask for a complete physical also.
thanks for adding to the information on this thread

Angel Oliver
01-30-2011, 11:56 AM
Hi yes i was diagnosed with srjogrens last year only after members here told me to go for an eye check up as i was on plaqunil.I was shocked to learn i had it.In the UK we dont get told to get your eyes checked or i didnt anyway.Now eye drops help and i wear glasses with a tint as my vision isnt as good as it was since getting sick.Hope you go get that check up n physical soon.Goodluck.

02-08-2011, 07:45 PM
Thought I'd bring this forward since others have been asking about this subject. I have to add flashes of ligh on the edges of my vision, cornor of the eye area ... Per rif fer all. How's the for spelling by the way it sounds.

Anyway here it is

02-08-2011, 07:46 PM
Thought I'd bring this forward since others have been asking about this subject. I have to add flashes of ligh on the edges of my vision, cornor of the eye area ... Per rif fer all. How's the for spelling by the way it sounds.

Anyway here it is

02-08-2011, 08:53 PM
I'll be seeing the ophthalmologist on Thursday.
Thanks for the reminder to ask about my problems focusing.

BTW Nonna - peripheral - That is one of the things that my doc stresses about checking every time.
He said that changes in peripheral vision are the first indicators of a problem caused by the plaquenil.

LOL - as a former teacher, I think that I had lots of practice seeing out of the edges of my eyes, and the back of my head, too!

02-08-2011, 09:07 PM
Do the "flashes" on the peripheral portion of your vision happen when/as you blink, or maybe when you're chewing food or moving your mouth? Or do they happen arbitrarily as you're "looking" at something? Do they always "flash" in the same "quadrant" of the field of vision, like, always in the lower-right, or the upper-left? TMJ can pinch the optic nerves and cause all sorts of symptoms, as can fatigue, among other things.

My eyes blur and "clear", they get "gummy", "crusty" or may be fine, at any given time. I've not been able to associate any one thing with it, other than the blur can happen when my blood sugar goes up (pred), and I'll get blurry vision and "gummy" eyes when I flare, and I'll start getting crusty-eyed when I'm getting sick sick... Seems to follow the weather, but not always... A failure to focus (both optically and mentally), for me, gets worse with age... I see an opthamologist once a year WOF.

02-08-2011, 10:27 PM
The flashes, according to my eye doctor are caused by fiction in the eye between the vitrious and the inside ofthe eye. It happens when I move my eyes to fast. Or jerk my head. Parkinson's is very active day so I think that's the reason.