Juan Ding, OD, PhD

I received a message from a patient who sounded desperate. She said that her eyeball is changing color, that she has necrotizing scleritis, and her uveitis doctor is not picking up the phone.  

The last time I saw her was a year ago, she was only 22, a young and vibrant age. However her lazy eye was bothering her a lot. She had it since she was a little baby, the right eye went out with poor vision. She had patching therapy to treat lazy eye, but her vision was still 20/100 in that eye at its best. 

Lazy eye is a condition that develops before 8 years of age. From birth to roughly 8 years, kids’ eyes need to receive sufficient visual stimuli to develop their visual pathway leading to normal vision. A lazy eye could be turning out or turning in, or turning up or down, which prevents this eye from getting the proper visual stimuli, leading to abnormal development of the visual part of the brain corresponding to this eye. As an adult, it becomes very difficult to treat lazy eye, as the visual brain becomes less elastic.

Not only does a lazy eye that has an eye turn affect vision in one eye permanently, it also poses a psychological and social challenge for patients. A very noticeable eye turn can cause reduced self esteem and is a problem beyond just the cosmesis. Many adults with an eye turn seek surgery to make their eyes appear straight, even if that does not change vision. When I asked if she was interested in such an option, she very happily said yes. 

So I referred her to a specialist that does such surgeries for adults.

Most of these surgeries are successful, with a happy patient who feels more confident in their daily lives. Complications are uncommon.

The surgery went well for her. However, very unfortunately, a rare complication happened. Necrotizing scleritis is a rare eye condition which can be caused by autoimmune conditions. She has a preexisting autoimmune condition, psoriatic arthritis. With this condition, patients have  joint pain and red scaly rashes on their skin. Her symptoms were in good control prior to the surgery. However, unfortunately the surgery and sutures triggered inflammation of the white lining of the eyeball, the sclera. Remember she has only one good eye with the other seeing poorly from being a lazy eye. Though eyes are straight, she still relies on only the good eye to see and function. The unfortunate part is that the good eye developed the necrotizing scleritis, as eye turn surgery was typically done on both eyes. Scleritis is a rare condition, necrotizing scleritis is even more rare. It is the most severe form of scleritis, with the tissue undergoing necrosis, or death. Patients have excruciating eye pain and reduced vision. The prognosis is poor, with high likelihood of vision loss.

No one could foresee such a complication to happen, but it happened. She was seeing uveitis specialists from the best eye hospital in the area, as well as rheumatologists. The silver lining of this unfortunate event is that after some time, her eye was stabilized and under control with a medication called methotrexate as well as multiple eye drops. She was doing well for some time and her vision was preserved. 

Until she got pregnant. She should not get pregnant while taking the medication that she’s taking for her active autoimmune condition. It was not planned. But she’s happy with her fiance and she’s scared but loves her baby. Methotrexate is a pregnancy category X drug, which means it is not recommended to take during pregnancy. It may cause miscarriage and birth defects of the baby. 

What now? She had to stop the medication. Her eye condition took a turn. It’s getting worse again, and she is being referred from one uveitis specialist to the next. She was not able to get an appointment and she told me that her eyeball is changing color. The color change in scleritis means the sclera tissue is getting thin, to the point the underlying choroid is showing through. 

I am not a uveitis specialist, her case is beyond my specialty. I reached out to her specialists- I do not want to get into the details of the process- and I believe that she will be seen and treated soon.

It is not easy to be a woman. First off, women are more likely to have autoimmune conditions and more likely have severe symptoms. Well she is one of these women. Autoimmune diseases can affect young people, and she is young. Second, most medications for autoimmune conditions are not pregnancy friendly. For women at child-bearing age, if they are battling active autoimmune diseases, they hardly have a choice to have kids. If they do get pregnant, they may have to hold off the treatment and risk their conditions getting worse. There is no winning for them.

For my patient, she has bad luck to incur a rare complication after a usually very safe surgery, a surgery that she rightfully deserves. The pregnancy should have been prevented. But accidents can happen. On the one hand, she is risking losing vision in the only good eye without the medication, and on the other, she would be risking the baby if she were to resume the medication. Difficult choice and I feel very sorry that she has to choose.

If it were you, how would you choose?