My Experience Going to a Sjögren’s Syndrome Specialist

I was thrilled when my rheumatologist offered to send me to a Sjögren’s syndrome specialist. I had no idea there was one in my city. In my excitement, I envisioned a near-perfect doctor’s appointment where I’d finally get answers on how to treat my dry eyes and mouth.

I’ve had chronic dry eye for over 5 years, but it wasn't until I developed dry mouth around 1.5 years ago that I was taken more seriously. Many things can cause dry eye, like autoimmune diseases and medications, but once I had additional symptoms of dryness my doctor ran an early Sjögren’s antibodies panel. I tested positive for dry mouth antibodies and got my referral; in retrospect, this should have been my first sign that dry eye wouldn't be the top priority.

Going to the appointment

Finally, after months of waiting, it was time to go see the specialist! I was uncomfortable, however, from the instructions to stop treating my dryness before being examined. For example, I couldn't take a saliva stimulator or use any type of artificial saliva for 12 hours beforehand. I also couldn't use eye drops or wear contacts for 12 hours prior. Before the appointment, I couldn't eat or drink for 90 minutes.

I was concerned about not being able to use my contacts. My glasses are out of date (since, unfortunately, my vision insurance pays for very little), and I experience more dryness while wearing glasses. I was afraid my eyes would be blurry or glued shut after those 12 hours. How would I drive to the appointment? Thankfully it was only 15 minutes away, and I made it there safely.

A slew of testing

Thirsty and dried out, I was finally called back to a room without doors that said, “Operatory.” I felt anxious walking into the open room, which looked like an oversized dentist's office with lots of unpleasant-looking equipment.

First I did saliva tests: one where I saved whatever I made naturally into a vial, then another where I chewed gum pellets for 5 minutes and saved that saliva. The difference was remarkable: just under 3 mL vs. 12.5 mL. Both values were low, however.

I then had a physical exam of my mouth, jaw, and throat, and a process of expressing my saliva glands to see if they were blocked. At this point, I was cleared to sip my water and answer questions. I had written out a detailed history and went through all my symptoms of dry mouth and dry eye, as well as my systemic Sjögren’s symptoms.

Lastly, I underwent a Schirmer's test. This involves putting strips into your lower eyelids that measure tear production. I've found it can be painful. I first had this test in 2017 when my dry eye began, and my results were under 5 ml in each eye. This time my numbers ranged from 20-35 mL, which seemed shocking compared to how dry my eyes felt. However, I wasn’t given numbing drops to prevent my eyes from tearing due to pain (which can skew the results and deviates from the test protocol).

Meeting the specialist

The doctor arrived and quickly began an exam of my mouth and throat. We discussed my dry mouth history, talked about my treatments, and he recommended a different saliva stimulant medication.

He offered to perform a biopsy where small portions of my lower lip would be removed and analyzed for Sjögren’s. This would be my best diagnosis option since I do not have traditional Sjögren’s antibodies. Receiving a diagnosis of seronegative Sjögren’s would help me validate my disease and treatment options, especially with insurance. We scheduled my biopsy.

Asking an important question

The doctor began to leave without examining my eyes. I spoke up, telling him that my dry eyes bothered me much more than my dry mouth. In fact, I had to stop my anti-depressant, which caused my mental health to dip to an all-time, scary-low point, because it made my eyes were too dry to function.

According to my ophthalmologist, I was out of options for treatment aside from serum tears, which I couldn't currently afford. I had waited months to ask this doctor what his Sjögren’s patients did for depression and their dry eye treatment after trying everything else.

He had no answer and showed very little interest in the fact that chronic dry eye was taking massive chunks of my life from me. I’m not sure if he lacked empathy or if he was simply being matter-of-fact that there just aren't other options avaliable for me.

Accepting that this wasn’t my answer

I was so desperate that I looked at the doctor one more time and repeated my concerns and need for help. He only offered serum tears despite my statements about that being inaccessible to me at this time.

I had to gather myself together and numbly walk out of the office. I made it to my car where I sat crying painful tears. My heart broke that there were no answers for my dry eyes (or mental health) that day. Nonetheless, I keep looking for answers.

I looked at the doctor's office name, “Oral Medicine & Maxillofacial Surgery” and realized that I’d wanted answers so badly that I didn’t see the reality that he’s most interested in the salivary side of Sjögren’s dryness.

A caution to others

As chronically ill patients, we face disappointments with our medical care all too often. I recognize that this appointment was still helpful since I scheduled a biopsy that could lead to an authoritative Sjögren’s diagnosis.

However, I caution others to not make the same mistake I did of assuming that a Sjögren’s specialist will automatically prioritize and treat chronic dry eye. I'm sure there are specialists that prioritize dry yes, I just haven’t met them yet.