15 Questions - How Lupus Can Affect the Eyes

1. Is there was any association between the macular degeneration and autoimmune diseases such as lupus?  Albany, NY

Macular degeneration is a broad descriptive term that can include many types of changes in this tissue.   The macula is an area of the retina, which is the thin lining inside the eye that receives the images of light traveling through the eye and then sends these signals to the brain for interpretation.  A camera analogy for the eye is often used, and the retina is described as the film.  The macula is the area of the retina that receives the visual information that is central in our field of view – not the peripheral or side vision.  It allows for fine details and color vision.  Degeneration can occur in this area due to various causes.  The most common type is age-related macular degeneration (AMD).  Autoimmune diseases are not listed as typical risk factors for AMD.  However changes in the macula can be found in individuals with lupus.  The macula is pigmented tissue, and pigmentary changes can occur from some of the medications used to treat the disease.  Also, the blood vessels in the macular tissue can be affected by lupus, possibly causing the changes in the macular tissue. 

2. I was diagnosed with macular degeneration at age 25 and I constantly have episcleritis.  Could this be related to my SLE?  Rock Hill, SC

Episcleritis, an inflammatory condition involving the outer lining of the “white” of the eye, is associated with lupus.  Macular degeneration or macular changes may be due to the medications used to treat lupus or due to the retinal vascular disease associated with lupus.  Most common retinal changes due to SLE are cotton wool spots (areas indicating lack of adequate blood supply) and intraretinal hemorrhages (leaking of the blood vessels due to small occlusions in the blood vessels).

3. Is it actually Lupus that affects the eyes and vision or is it the medication to treat Lupus symptoms?   I was told that the medication I am taking "Plaquenil" can cause blindness at the dosage I am taking, so I must have a complete eye exam every 6 months. Sarasota, FL

Both lupus and some of the medications used to treat lupus can affect the eye.  Hydroxycholoquine (Plaquenil) is an antimalarial drug used in the treatment of SLE. Typically, only dosages higher than 6.5mg/kg per day are associated with retinopathy, but a few cases of this toxic retinopathy have been described at lower dosages. Retinal pigment findings, called bulls-eye retinopathy, may be permanent.  Other side effects of this drug toxicity would include diminished color vision and/or some central vision changes or loss of visual acuity. 

4. If your doctor tells you that your retinas are bleeding, what other tests are recommended, i.e. CT Scans or others?  Cambridge, NE

The necessity of other testing would depend on the cause of the bleeding.  If the pattern of bleeding in the patient’s retina is associated with and consistent with a known (previously diagnosed) systemic disease, such as SLE, diabetes mellitus, or hypertension, then controlling the systemic disease helps to resolve the leaky blood vessels in the retina.  If the cause of the bleeding is unknown, other testing would be indicated to identify the cause of the retinal bleeding.  The type of testing would depend on the doctor’s suspicions (differential diagnosis) as to the cause of the bleeding.

5. I have experienced lupus symptoms for years, but was only diagnosed 3 years ago. For the past year, I have been developing corneal ulcers which my ophthalmologist feels is from my lupus.  Is this common with lupus and is there anything I can do to help with this?  Bainbridge Island, WA

Peripheral (the portion of the cornea closer to the white of the eye versus the central location of the cornea) corneal ulcers can be associated with SLE, but are less common of the corneal manifestations of the disease.  Dry eye is a much more common finding in SLE. And the lack of an adequate tear film, which serves to bathe the cornea, can cause the outer layers of the cornea to break down.  So if the peripheral ulceration is due to inadequate tear film, then treatments would target improving the lubrication of the ocular surface. These treatments often include frequent application of non-preserved ophthalmic lubrication drops and ointments, occlusion of the tear drainage structures, and topical ophthalmic prescriptive cyclosporine drops.  Use of room humidifiers and avoidance of windy environments may also help.

6. I was told by the ophthalmologist that I have dry eyes due to lupus.  How are lupus and dry eyes related?  Denver, CO

Yes, dry eye is a common ocular association of SLE, although for most patients the symptoms are not severe.  In one study, approximately 60% of patients with SLE reported at least one symptom of dry eye.  The lacrimal gland, which produces tears, can be affected by autoimmune diseases such as rheumatoid arthritis and lupus.

7. I have had SLE for 25 years.  I have been on high doses of prednisone.  However, for the last ten years, for the most part, I have been on 5mg daily.  I was just recently diagnosed with Central Serous Retinopathy.  My Retinologist says prednisone could possibly have caused this problem.  How common is this for SLE patients?  Columbia, MD

Central serous retinopathy is associated with corticosteroid use.  More well known ocular side effects of prednisone (a corticosteroid) include cataract and glaucoma.  When reviewing the literature, central serous retinopathy is not noted as a common finding in patients with SLE.

8. I have SLE and I'm currently taking Prednisone 10 mg and Plaquenil 400 mg.  During my last two visits with the eye doctor he discovered "macular swelling" in both eyes.  He had me come back 3 months later and it hadn't changed.  What does this mean?

Macular swelling is a term that is used to describe fluid in retinal spaces where it is typically not found.  This can be due to leaky blood vessels in the retina or below the retinal layers.  If the swelling is a well-defined circumferential swelling, it may be central serous retinopathy, and may be a side effect of the prednisone.  When the swelling is directly due to SLE affecting the retinal vasculature and causing the leaky blood vessels, it is an indication of active systemic disease in most patients.  When the systemic disease is controlled, if these retinal findings are due to the SLE, they resolve in over 80% of patients.

9. I am newly diagnosed with Lupus SLE.  Could this be why my peripheral vision is not acting proper?  I am going to have a field vision test.   What does all that mean and why is it important?  Atkins, AR

Commonly used medications in the treatment of SLE, specifically antimalarial drugs choloroquine and hydroxycholoroquine, can cause some sight-threatening eye diseases. To monitor the health of the eyes while on these medications, visual field testing and color vision testing are recommended at regular intervals.  These tests can be early detectors of these sight-threatening side effects.  If vision loss is detected, medications can be altered to help prevent permanent vision loss.

The macula, which provides for central vision, is affected by this medication.  However, your change in peripheral vision could be caused by many conditions, and you should ask your optometrist or ophthalmologist specifically about this.

10. I am wondering how advisable it would be to either use contact lenses or look into LASIK when I have sensitive eyes.  I get a burning and tearing, and I have a real problem if anything gets in my eyes.  Will that prevent me from using contact lenses?  Salem, UT

Dry eye is a common ocular manifestation of SLE.  Depending on the severity of your dry eyes, contact lenses may not be recommended.  Certainly the dry eye condition would need to be controlled before a successful trial of contact lenses could be attempted.  I advise against LASIK for patients with SLE.  Extreme caution should be used when considering any excimer laser surgery, an elective procedure that removes corneal tissue for the correction of refractive error, for any patients with connective tissue disease. Some autoimmune patients, even with inactive rheumatologic disease, have reported complications after this procedure.

11I now have 2 types of cataracts one from prednisone and the other most likely from lupus.  I am told that the lupus-like cataracts are diffuse, small spots in both eyes and that nothing can be done for them.  Are lupus cataracts diffuse spots?  Can anything be done?  What is the probability that they will one day impact vision?   Can they disappear?  Denver, CO

Cataracts, specifically posterior subcapsular cataracts, from prednisone are a well-known side-effect of this medication.  I am unfamiliar with the term lupus cataracts.  Some SLE patients experience inflammation inside the eye.  Cataracts that may be caused by inflammatory conditions inside the eye, like any cataract, are permanent.  The impact that the cataracts may have on vision will depend on their size, location and severity (degree of “opaqueness” or ability to scatter or block light from passing).  If caused by severe inflammatory conditions inside the eye, other incidents of this inflammation may cause more cataracts.

12. I often get dry eyes, sometimes so bad my eyes hurt.  I've often noticed when the light hits them i tend to want to roll my eyes.  Is there an eye drop that you can recommend?  Also, how does dry eye affect vision?  Arlington, TX

Dry eye is a common finding in persons who have SLE.  Many individuals have a mild form of dry eye, when others have a more significant condition.  I would recommend you see your eye care provider to evaluate the dry eye and make recommendations based on the finding of this evaluation.  The tears, coating the front surface of the eye, play an important role in the health of the eye as well as the quality of vision.  It is the first surface that light is transmitted when entering the eye.  If the tear film is not smooth and consistent, visual distortion will occur.  This distortion is transitory, and can cause vision to change with blinking.

The discomfort due to light sensitivity will dissipate when the ocular surface is improved through treatment.  Treatment often includes ocular lubrication with artificial tear drops, ointments, ocular nutritional supplements, prescription eye drops, and occlusion of the tear drainage structures. Eyelids will also be evaluated for position and health.  Any eyelid conditions, such as blepharitis or meibomian gland dysfunction, would also need to be treated to improve the quality of tears.

13. Is there a special kind if vision exam or extra tests to schedule for people with Lupus? How would taking Plaquenil affect how often I should get my eyes examined?  Cincinnati, OH

Individuals with SLE may have specific ocular complaints, such as dry eyes, which should be evaluated during the eye exam.  Also the disease can cause changes in the blood vessels in the retina.  These ocular manifestations of the disease should be monitored and treated, as needed.  The medications used in the treatment of SLE include corticosteroids (prednisone), which can cause increased intraocular pressure and cataracts.  The antimalarial drugs used in the treatment of SLE can cause retinal toxicity, as described above in question 9.  The macular portion of the retinal should be evaluated carefully, and visual field tests and color vision tests are also used to monitor the macula while on these medications.

14. I have always had minor eye dryness, but since my Lupus diagnosis, it has gotten much worse. I have had my eyes checked, and the doctor does see evidence of cataracts and glaucoma - just not severe yet. In the meantime, my eyes are so dry that my eyelids stick to them sometimes. Is this from the Lupus, or is it from the medications I am on. I take Plaquenil and a mild diuretic, along with Levothroid, Cymbalta and Lipitor. I recently weaned myself off Prednisone. I use OTC eye drops so far, and a prescription will be next if I can't stand it any longer - according to my doctor.  Riverhead, NY

The increase in dry eye symptoms can be from the Lupus, as this is a common ocular finding of the disease.  The diuretic may make the condition worse.  Many different formulations of artificial tears exist.  Some are thicker, and last longer, but may temporarily blur the vision.  These thicker drops would be better to apply before sleeping, or at times when sharper vision is not required.  Thinner formulations would need to be applied more frequently.  Preservative-free formulations would be best with frequent applications.  For patients who do not produce adequate tears, a prescription eye drop (cyclosporine) may be beneficial.  For those with eyelid disease, which may affect the oil in the tear film and cause quicker evaporation of tears, eyelid treatment is recommended.

15. I was recently diagnosed with retinopathy in both eyes. I don't have high blood pressure or diabetes. I was told that it is a reflection of the health of my vascular system. I am wondering if this is correct and what should I be doing to improve the health of my blood vessels? Cambridge, NE

Three to 29% of patients with SLE will have retinal involvement.  There is correlation between the vascular retinopathy in the eyes and the activity of the SLE systemically.  Most patients with mild retinopathy are at low risk for vision loss.  Once the disease is controlled systemically, the retinal vasculature changes should resolve.