How My Doctors Monitor Me For Sjogren’s
- Sarah Schafer, MD
- 5 days ago
- 9 min read
Ongoing Care - Part 5
To get the most out of this post, including finding links to other posts in the Ongoing Care series, read HOW TO MONITOR SJOGREN'S.
Please note that this post is NOT a handout, a guideline, an official recommendation,
or medical advice.
INTRODUCTION
There is no “dryness-only” version of Sjogren's disease. Every patient, regardless of symptoms or antibody status (like SSA), should be monitored for a wide range of systemic manifestations and comorbidities.
Given the lack of comprehensive Sjogren’s care, patients often need to advocate for the care they need.
No two patients are alike. Your care must be individualized based on your unique circumstances. I'm fortunate to have a rheumatologist who recognizes the serious, systemic nature of Sjogren’s and takes the lead on my care.
In this blog post, I share how I am monitored as a long-standing patient. My specific experience will not be exactly what you need, but it can help you think about what to ask your doctors about. I don’t list everything I have ever been tested for because Sjogren’s care varies over time, and patients need more detailed evaluation early on.
EARLY ACTION STEPS
1. If your doctor minimizes Sjogren's as a mild dryness syndrome, you are unlikely to get the care you need. Ask other Sjogren’s patients (in support groups such as Smart Patients) for recommendations of Sjogren’s-knowledgeable doctors.
2. Most patients will, at some point, need care from additional specialists such as neurologists, pulmonologists, and others. Learn who is authorized to arrange specialty referrals in your medical system. In my healthcare system, both my rheumatologist and primary care doctor make referrals to specialists.
HOW I KNOW MY SJOGREN'S CARE IS A GOOD EXAMPLE OF
After the first two rheumatologists I sought help from downplayed Sjogren’s and refused to diagnose me without a positive SSA, I realized that I needed to learn a lot about the disease to advocate for diagnosis and proper care. That was 2003.
Because of these experiences, I made it my mission to identify credible, up-to-date information about Sjogren’s. I realized that the inadequate care Sjogren’s patients receive is caused, in large part, by deeply ingrained misconceptions about Sjogren’s that create significant gaps in research and medical education.
For more than two decades, I have been gathering, curating, and synthesizing information about Sjogren’s disease from a wide range of science-based sources including:
attending Sjogren’s education programs for doctors (CME) as well as Sjogren’s Foundation and Dysautonomia International patient conferences,
reading and critically analyzing journal articles and academic books,
communicating with experienced rheumatologists about clinical practice,
exchanging ideas with international experts on the social media platform, X (formerly Twitter).
I take detailed notes and critically analyze the content of all these resources. I synthesize all this information, accounting for flawed assumptions, misconceptions, and research design to create an up-to-date picture of comprehensive monitoring for Sjogren’s.
The knowledge I’ve gathered has helped me build a team of doctors who provide most of the care I need. I share my insights and practical lessons on Sjogren’s Advocate to help others navigate their own treatment.
This blog post focuses solely on the care provided by my PCP and rheumatologist for my systemic (non-dryness) manifestations of Sjogren’s and its comorbidities.
It does not discuss:
dryness (SICCA) care, which is important but covered elsewhere;
details about specialty care, because this varies widely among patients;
It is beyond the scope of this blog post to detail the meaning or rationale for every test. If you encounter an unfamiliar abbreviation or test, please consult the GLOSSARY. The glossary on Sjogren’ s Advocate explains what tests mean in the context of Sjogren’s, which often differs from the general definition you will find by searching the internet.
WHAT MY PRIMARY CARE PRACTITIONER (PCP) MONITORS ME FOR
Iron deficiency
Iron deficiency without anemia is a common contributor to Sjogren’s fatigue but is often missed. Read about Iron Deficiency and Sjogren’s to learn about screening and treatment, and why lab reference ranges are often too low.
Tests: a blood test for ferritin levels. Mine is checked every 3-6 months because I have longstanding iron deficiency requiring treatment.
Vitamin D deficiency
Vitamin D deficiency is common in Sjogren’s and may contribute to osteoporosis and other issues. Vitamin D supplementation must be guided by your doctor, as excessive Vitamin D intake can be harmful.
Tests: an annual blood test for Vitamin D level
Osteoporosis
Tests: I’ve had multiple DEXA scans for bone density starting in my late 40s. Because I have osteoporosis, my doctor referred me to an endocrinologist for more detailed monitoring and treatment.
Hashimoto’s thyroiditis
Up to 30% of Sjogren’s patients are impacted by Hashimoto’s.
Tests: an annual blood test for TSH level
Cardiovascular risk
Tests: blood pressure, lipid panels once a year. Other tests may be needed based on age and risk factors.
Diabetes
Tests: An annual blood test for Hemoglobin A1C. Other tests may be needed based on individual risk factors.
Celiac disease
Celiac disease impacts nearly 1 in 10 Sjogren’s patients but is often missed.
Tests: I've had a blood test for tTG-IgA test and a biopsy of the small intestine. One blood test and/or biopsy is usually sufficient, as explained on Celiac disease, gluten, and your health.
Infection prevention
My PCP makes sure that I am up to date on immunizations. People with Sjogren’s are at increased risk of hospitalization or even death from infections.
Please note: Most PCPs have little, if any, Sjogren’s training, and may not be aware that Sjogren’s patients are at increased risk of comorbidities such as the ones above. You may need to specifically request screening tests to ensure you are being monitored adequately.
WHAT MY RHEUMATOLOGIST MONITORS ME FOR
I have a 30-minute in-person appointment with my rheumatologist once a year, more often, if needed.
My rheumatologist not only looks at my lab test results but also does the following:
Checks in with me about changes and top concerns I have, including fatigue and function.
Looks for signs and symptoms that could indicate other autoimmune and rheumatic diseases, especially rheumatoid arthritis, lupus, systemic sclerosis, psoriatic arthritis, and spondylitis (210). (These IMMUNE COMORBIDITIES, which impact about half of patients, may arise at any time. I have axial spondylitis, which my rheumatologist monitors along with Sjogren’s.)
Performs a physical examination, including listening to my heart and lungs with a stethoscope, palpating my abdomen, inspecting my skin, joints, and any new areas of concern.
Discusses treatments, medication side effects, labs, and initiates referrals as needed.
Tip: Don’t wait until the day before your visit to prepare for your doctor’s appointment.
The following resources will help you prepare for your appointment and confidently communicate with your doctor:
The SELF-ADVOCACY section of Sjogren’s Advocate,
The book “How to Be a Badass in a Broken Healthcare System” by board-certified patient advocate Kristina Kelly,
The video course, “Streamlining Sjogren’s” by Kristina Kelly and me.
My Routine Rheumatology Labs
This list of my routine lab tests fits well with what many Sjogren’s experts recommend be checked at least once a year. These are blood tests unless otherwise indicated. You may need additional labs or more frequent testing based on your risk profile, medications, and any new signs or symptoms.
1. Complete blood count (CBC) with differential and platelets
A complete blood count (CBC) is a standard test that can reveal many things about your overall health.
Low numbers of blood cells, called cytopenia, impact about one in three Sjogren’s patients. Cytopenia can show up as:
low red blood cells (anemia),
low neutrophils (neutropenia) and low white blood cells (leukopenia), which can affect the body's ability to fight infection, and
low platelets (thrombocytopenia), which can affect blood clotting.
Cytopenia is considered a systemic manifestation of Sjogren’s when other causes, such as medication side effects or iron deficiency anemia, are ruled out.
2. Kidney function tests
The tests listed below are used to screen for several types of kidney disease. The asterisk (*) indicates screening tests for tubulointerstitial nephritis (TIN), the most common type of kidney disease caused by Sjogren’s, which impacts at least 1 in 10 patients (79, 268).
TIN causes distal renal tubular acidosis dRTA, which means the kidneys struggle to maintain the proper acid-base balance in the blood stream.
TIN can sneak up on you because it usually doesn’t cause obvious symptoms early on and doctors may not know to screen for it. Rheumatologists are often more focused on screening for glomerulonephritis, a different, and extremely severe, type of kidney disease that affects about half of lupus patients but is also seen in a small number of Sjogren’s patients. Patients should be screened for both types of kidney disease, but TIN screening is often overlooked.
So that TIN is not missed, you may need to ask your rheumatologist to order the necessary tests for dRTA (as indicated by an asterisk (*)), especially the blood tests for potassium and bicarbonate. These tests can be ordered individually or as part of a comprehensive metabolic panel.
Blood tests
Creatinine - look for rising over time
eGFR (estimated glomerular filtration rate)
Potassium - low potassium can be an early sign of dRTA*
CO2 / bicarbonate - if low, can indicate dRTA *
Urine tests: Urinalysis (UA)
Red blood cells
White blood cells
Protein
Creatinine
Urine pH - high pH seen in dRTA *
Urine calcium crystals - may indicate stones, secondary to dRTA*
3. Liver enzymes (ALT and/or AST)
Other common liver tests include alkaline phosphatase or bilirubin. These tests can be ordered as part of a comprehensive metabolic panel or as individual tests. Liver disease is usually not directly related to Sjogren’s but caused by metabolic syndrome (“fatty liver”), medications, or alcohol use. Your doctor may order special tests if they suspect primary biliary cholangitis (PBC) or autoimmune hepatitis (AIH), immune comorbidities that impact about 5% and 2% of Sjogren’s patients, respectively. Learn more about Sjogren’s and liver disease.
4. CRP and ESR
These tests are used to detect systemic inflammation, but they do not reflect Sjogren’s overall disease activity or inflammation caused by Sjogren’s. Consequently, they are not a useful tool for making decisions about treatment (with the exception of Sjogren’s vasculitis).
CRP (C-reactive protein) is usually normal in Sjogren’s even though Sjogren’s is a systemic inflammatory disease. It’s still important to check CRP levels because an elevated CRP should prompt your doctor to look for a non-Sjogren’s cause of inflammation, such as infection or a second autoimmune disease.
ESR (erythrocyte sedimentation rate) is elevated in about 1 out of 3 Sjogren’s patients. Like CRP, the ESR does not reflect overall Sjogren’s disease activity. However, a high ESR often reflects high IgG levels (see item 5). Like CRP, a high ESR may indicate infection or a second autoimmune disease. Read Sjogren’s and Inflammation Part I and Sjogren’s and Inflammation Part II to learn more about CRP and ESR in Sjogren’s. You will find self-advocacy tools to help you communicate with clinicians who misunderstand the purpose and meaning of these tests in Sjogren’s.
5. Complement (especially C4), cryoglobulins, and Serum Protein Electrophoresis (SPEP)
Abnormal values for any of these blood tests are associated with an increased risk of developing certain systemic manifestations such as glomerulonephritis (a severe type of kidney disease), vasculitis, lymphoma, and multiple myeloma. Being at increased risk does not mean you will develop these problems, but it does suggest you should be monitored closely.
The Glossary provides more information, but these tests are technical and complex and beyond the scope of Sjogren’s Advocate. Your rheumatologist needs to consider many factors, based on your unique situation, to interpret what these tests mean for you and to determine how often they should be done.
BASELINE TESTS THAT I'VE PREVIOUSLY HAD
If you have never had the tests listed below, ask your doctor about getting them done.
Rheumatoid factor (RF) is usually ordered during diagnosis. RF is common in both Sjogren’s and rheumatoid arthritis. It is a risk factor for a variety of systemic manifestations of Sjogren’s. This test may be repeated based on the clinician’s judgement.
ACPA (aka CCP) Patients with ACPA/CCP are at increased risk of developing rheumatoid arthritis. This test may be repeated based on the clinician’s judgment.
Anticentromere antibody (ACA) is often positive in limited systemic sclerosis (CREST) but may also support a Sjogren’s diagnosis in the absence of SSA or SSB.
Lung disease screening or testing
Baseline lung disease screening is recommended in all patients, regardless of symptoms. Patients with chronic cough, exercise intolerance, or shortness of breath should have more in-depth testing, including a high resolution CT of the lungs. For detailed information and self-advocacy tools, see What You Should Know About Sjogren’s Lung Disease.
WHAT NOT TO MONITOR
SSA (aka Ro), SSB (aka La) and ANA are blood tests used for diagnosis, not for monitoring.
Once these autoantibodies test positive, repeat testing is unnecessary and may create confusion. SSA titers do not correlate with disease activity or predict flares (197, 254, 267).
Exceptions:
SSA titers are useful in pregnancy and in women planning to become pregnant.
Ro52 is a distinct type of SSA, different from Ro60 which is what most patients are tested for when SSA is ordered. It is occasionally positive when Ro60 is negative.
Ro52 is associated with increased risk of interstitial lung disease.
WHAT IS MISSING FROM MY SJOGREN'S MEDICAL CARE?
I have a form of dysautonomia called Postural Orthostatic Tachycardia Syndrome (POTS), which is one of the most common and debilitating neurological manifestations of Sjogren’s. Even though POTS is estimated to impact 3-6 million people in the US, very few doctors are educated about dysautonomia. This lack of specialized knowledge leaves me, and many others, without a referral option within my healthcare system. Out of necessity, and with the help of my PCP, I’ve had to manage my own POTS care using the same resources I provide on Sjogren’s Advocate, including the AUTONOMIC DISORDERS / POTS.
