Subscribe

The Sneaky Autoimmune Disease that Even Tricked a Board-Certified Immunologist

sjogren's May 25, 2021
Patient discussing symptoms with a doctor in a clinical setting, with the doctor taking notes on a clipboard, illustrating a medical consultation process.

Let’s talk about one of the MOST common but LEAST talked about autoimmune conditions…

 

Sjogren’s Syndrome (pronounced Show-grins).
It is a condition that I am on a mission to increase awareness about...

 

Why?

Because even being a board-certified immune system expert didn’t spare me many of the frustrations common to this condition...

In hindsight, I had symptoms for YEARS before my own diagnosis.

Symptoms that slowly progressed over the course of my medical training...

 

I distinctly recall a visit to my primary care doctor for low back stiffness as an intern…
Querying my Ob-gyn about pain with sex later in residency…
Talking with my optometrist about my inability to tolerate wearing contact lenses any more when I started fellowship…
Hypothesizing with my partners about a random episode of anaphylaxis as a second year fellow...
Shuffling through the fatigue and fog that seemed unending but I chalked up to being both a new attending immunologist and mom.

 

The last straw?
Of all things..
It was when my dental hygienist mentioned my mouth looked dry.

 

Sadly, this lag in recognition and diagnosis is NOT uncommon.

The average time to diagnosis has improved in recent years but it still takes between 2-3 years to put a name to the symptoms: Sjogren’s syndrome.

 

Why?

For a few reasons…
Dry eye and dry mouth are relatively common affecting up to 15% of people as we age.
And let’s be honest, fatigue and joint pain aren’t rare either.

Many times these symptoms are brushed off:

  • By the patient (especially doctor patients)
  • By loved ones
  • By healthcare professionals

 

It doesn’t help that our healthcare system is broken.
You are lucky to get more than 10 minutes with your primary care doctor, nurse practitioner or physician assistant.

 

10 minutes…
For 20 different checkboxes to be clicked.
BUT also not feel so rushed...
That you are comfortable enough. Confident enough.
To be vulnerable and share.

 

To add to the complexity…
It is also not the easiest diagnosis to make.

 

Autoimmune testing is not straightforward…
From ordering the correct tests…
To knowing how to interpret the results…
And also recognizing that sometimes the labs are normal…
But the patient’s symptoms are NOT normal.

 

Not every primary care doctor or health care professional spent time learning from an experienced & knowledgeable immune system expert during their training.
Many times it can be helpful to ask for a referral to see an autoimmune specialist.
This most often will be a rheumatologist but some allergists/immunologists (like me!) have a special interest and focus on autoimmune conditions too.

 

The labs specifically associated with Sjogren’s Syndrome are the SS-A (anti-Ro) and SS-B (anti-La) antibodies but other auto-antibodies may be positive including a rheumatoid factor (RF) and antinuclear antibody (ANA).

 

Here is the deal though:

ONLY 60-80% of patients have positive blood testing…
Which means that…
20-40% have NORMAL blood testing.

 

So typically a trip to see the autoimmune specialist will result in a whole lot of tests being ordered…
These may include those mentioned above AND a complete blood count, complete metabolic panel, inflammation markers, immunoglobulins, serum protein electrophoresis and immunofixation, and complement levels.

 

Did I mention that not everyone with positive antibodies HAS Sjogren’s?

This is why it takes considerable expertise and thoughtfulness to consider the whole patient, their symptoms and results within context.
Several different sets of diagnostic criteria have been set forth by national and world experts.
They both take into account the presence of lab abnormalities, ocular and oral symptoms, pathology from lip biopsy and other diagnostic testing that measures how dry the eyes and/or mouth are.

 

Are you curious how your symptoms stack up?

Click HERE TO TAKE THE SJOGREN'S SYMPTOMS SCREENING QUIZ.

 

Make sure to follow along as I share all about how my professional life turned personal as an allergist/immunologist turned Sjogren’s patients and food allergy mom.

Read More Posts

See All Posts

Navigating Healthcare: How to Avoid Medical Gaslighting

Feb 05, 2024

Lessons Learned: My Journey as a Doctor

Jan 29, 2024