Living with Chronic Dry Eye
Last updated: September 2022
My problems with chronic dry eye appeared suddenly a few months after I was diagnosed with lupus. While on a road trip with my husband, I suddenly couldn’t make out the words in my book – they were too blurry. Right away my mind went to all the scary places about what could be affecting my vision.
My quest for the right diagnosis
Before long, I realized that turning the air conditioning off helped significantly; that was my first clue about dryness. This happened in May and I endured many sweaty car rides that summer since my eyes couldn’t tolerate the air conditioning. Like most of my medical issues, it took a lot of time to get a diagnosis and figure out how to treat it effectively.
My difficult journey with eye doctors
First I went to my primary care doctor, who told me there wasn’t really anything you can do for dry eye. I was disheartened to hear that (and later learned it isn't the case at all), but I didn’t give up.
Then I headed to an ophthalmologist who refused to treat my dry eye unless he completed an eye exam for Plaquenil, which is one of my lupus meds. I had just completed my baseline eye exam - a standard precaution for potential eye damage from Plaquenil – a month beforehand and I knew another one would be unnecessary and not covered by my insurance. I visited another eye doctor and had the same experience.
While it’s important to carefully monitor your eyes while taking Plaquenil, I couldn’t understand why these doctors would not accept my recent exam results from another doctor and move forward with treating my eye issues.
Another doctor told me that insurance doesn’t cover dry eye exams or treatments (also untrue in most cases) and scammed me. Thankfully, I did eventually find good doctors, but I suffered for a long time while searching for the right one.
My search for the right treatment
Chronic dry eye is not necessarily a mainstream medical issue, so it can be difficult to find the right treatments. It's also not talked about often as a lupus issue, though eye inflammation is common in many autoimmune diseases.
I have tried numerous treatments for my chronic dry eye over the past 5 years and have reached a point where it’s well managed most of the time. My eyes worsen during my lupus and Sjogren's flares and started developing inflammatory eye lesions, so this issue seems connected to my systemic disease activity.
Some of the treatments I have tried
- Artificial tears – I use Systane gel and eye drops. There are preservative-free options for frequent use.
- Xiidra and Restasis prescription eye drops – I have tried both of these and found that I do better on Restasis, however it does make my eyes burn afterward.
- Eye plugs – I have had permanent eye plugs inserted in all 4 of my tear ducts. This has been one of the most effective treatments for my chronic dry eye. They did irritate me for the first few weeks, and I had to have one replaced, but otherwise, I’ve had them for 3 years without issue.
- Lacrisert – This is a rather unusual and expensive treatment for dry eye. I used it for a while but it was so difficult to insert into my eye that I moved on to other treatments.
- Treating the underlying disease – Anytime I changed meds that improved my lupus it would generally improve my dry eye as well.
- Removing meds that make it worse – a lot of medications will exacerbate dry eye and this is listed in the side effects typically.
- Taking fish oil supplements – the omega-3 and omega-6 fatty acids in fish oil may help with dry eye.1
- Steroid eye drops – these are primarily for eye inflammation, however, the inflammation likely contributes to dryness. steroid
- Lifestyle changes – things like moving my desk to not be underneath an air vent, filling up my home with humidifiers in the winter, and switching to higher quality contacts. When I drive I wear motorcycle glasses that semi-suction onto my face. I certainly don’t look cool anymore but I can run the air conditioning to my heart’s desire!
Seeking new treatment options
It’s been a long, difficult journey to figure out how to manage my dry eye. And there are still times when I find myself unable to do something like watch TV because my eyes are burning too much. There are more treatment options available that I haven’t tried as they aren’t covered by insurance, such as thermal pulsation (LipiFlow®). I look forward to trying more treatments in the future and treating my eyes to some high-quality tears.
Do you live with lupus and chronic dry eye?
How are you most likely to respond when someone offers you unsolicited advice about your lupus?