The Bumpy Road to Sjogren's Syndrome: Here's what you need to know.
When you have Sjogren’s Syndrome, the road to getting a clear diagnosis can be bumpy at best. Perhaps you have dry eyes and think it’s just allergies or your contacts. A routine eye check-up turns into a string of labs and tests you don’t understand, and your doctor suggests you have an autoimmune condition.
Eventually, you end up with a Rheumatologist, a specialist you’ve never ever heard of before now. She talks to you, looks at your labs and says, “Well, you don't have lupus or RA." A wave of relief washes over you. “But it appears you do have Sjogren's Syndrome." What’s that?
What is Sjogren's Syndrome?
Like many rheumatic diseases, Sjogren’s (pronounced SHOW-grins) Syndrome is an autoimmune condition. “Autoimmune” means that the immune system, for reasons that are unclear, attacks the cells and tissues in your own body.
Sjogren’s syndrome is seen mostly in women over 40 years old, but men and children can develop it as well. Although the entire body can be affected, the two areas of the body that are most impacted are the lacrimal glands (which produce tears in the eyes) and the salivary glands (which produce saliva in the mouth).
Sjogren’s leads to inflammation in these glands, which then results in gland malfunction. When these glands are malfunctioning, tear and saliva production decreases and we develop dry eyes and a dry mouth. A chronically dry mouth or dry eyes can be more than just a nuisance. Tears and saliva are necessary to maintain the health of our eyes, our mouth and our teeth.
More than just dryness
There are many different “flavors” of Sjogren’s syndrome. No two people with Sjogren’s are alike. For many, their main or possibly only symptom will be dry eyes or a dry mouth. Others can develop symptoms that range from fatigue and brain fog to skin rashes, joint and nerve pain and vaginal dryness, all of which severely impact one’s quality of life.
Rarely, there may even be lung and kidney issues. The nature of the symptoms can vary as well. For some, the joint and muscle pain can mimic what we see in Fibromyalgia and in others it can resemble the pain associated with Lupus or Rheumatoid Arthritis.
It can take time and diligence between you and your doctor to figure out what “flavor” of Sjogren’s you have and what treatment course is best for you.
Primary versus Secondary Sjogren’s
Doctors categorize Sjogren’s as either primary or secondary. This distinction is based on whether or not someone has another autoimmune condition as well. It is common to see Sjogren’s associated with (or secondary to) conditions such as Lupus, Rheumatoid Arthritis or Scleroderma. However, Sjogren’s can develop by itself as well. In those cases it is referred to as primary Sjogren’s. Why does this distinction matter? Knowing whether someone’s Sjogren’s Syndrome is primary or secondary guides the treatment options and confirms that other autoimmune causes for someone’s symptoms have been investigated.
Why we sometimes get an imprecise diagnosis
Getting clarity on whether you have Sjogren’s is often difficult. At first, people are often imprecisely diagnosed. They may be told they have Lupus or RA, but they actually have Sjogren’s. Why does this happen?
To make a Sjogren’s diagnosis, doctors consider several factors. Like every other autoimmune condition, the diagnosis relies on more than just labs. A thorough medical history and exam are essential to get it right. In terms of labs, people with Sjogren’s will often have a positive ANA and rheumatoid factor.
However, since both the ANA and rheumatoid factor are often positive in lupus or RA, pursuing further testing that is specific for Sjogren's syndrome is critical.
Two antibodies should be checked: the anti-SSA antibody and anti-SSB antibody. These antibodies (either one or both) are positive in 70-80% of those with Sjogren’s. If you are in the 20 - 30% with a negative anti-SSA or anti-SSB results, but we still suspect you have it, then we partner with ENT (Ears Nose & Throat) colleagues to perform a lip biopsy. This biopsy enables us to take a closer look at the salivary glands and see if there is inflammation.
Concerned about Sjogren’s Syndrome?
If you’re wondering if you have Sjogren’s, consider these questions:
Do you often feel like you have something in your eyes? Have you been told you have dry eyes by your eye doctor?
Do you need to drink something to comfortably swallow? Have you had an increase in cavities lately?
Has your energy level dropped significantly?
Do you have joint pain or stiffness when you wake up in the morning that lasts up to an hour?
If you answer yes to any of these questions or have been told you may have Sjogren’s Syndrome by another doctor, reach out to us for a consultation so we can help you get clarity.
At Motto, the time and attention each patient gets from their care team ensures that we get the right diagnosis the first time. We provide two comprehensive 60-minute visits that enable us to take a full lifestyle and medical history, as well as a thorough investigation of your symptoms. We also get any labs and x-rays we need.
If you already know you have Sjogren’s, we provide truly holistic treatment with an integrated care team that includes a Rheumatologist, specialty Nurse Practitioner, Registered Dietician and Health Coaches.
Millions of people live full and rich lives with Sjogren's syndrome. Understanding what it is and how to manage it enables those with Sjogren's to take full control of their bodies, and lead their best lives!