Sjogren’s syndrome is usually misdiagnosed several times before the correct diagnosis is made.
You may have Sjogren’s syndrome and not even know it, despite visiting one doctor after another to find out what’s wrong with your body.
Sjogren’s syndrome is an autoimmune disease that can affect many different systems of the body, multiple organs and produce a menagerie of symptoms, ranging from annoying to moderate, to severe to life-threatening (though the latter is rare).
Though Sjogren’s syndrome affects two to four million people in the U.S., it is one of the most misdiagnosed diseases, even though there are various tests that can confirm it.
Because Sjogren’s syndrome causes joint pain in 80 percent of patients, doctors who specialize in this condition are usually rheumatologists.
“Sjogren’s syndrome can be associated with a variety of autoimmune diseases including rheumatoid, lupus, thyroiditis, celiac sprue (disease), scleroderma, and even with non-rheumatic autoimmune diseases like autoimmune hepatitis, hepatitis-C, HIV,” says Ali D. Askari, MD, Professor of Medicine – Case Western Reserve University.
“Primary Sjogren’s syndrome (as opposed to secondary SS), however, is not associated with any of these and there are differential points in each case,” continues Dr. Askari, Chief, Division of Rheumatology – University Hospitals Case Medical Center.
“As opposed to rheumatoid arthritis, the joint involvement is not symmetrical, nodules are formed less commonly, and destructive changes of the bones are seen less likely.”
Nine out of 10 people with SS are women, for reasons unknown. The condition can affect any age group, but it’s rare under age 20. Mean age of onset is early to mid-forties.
Dr. Askari continues, “The specific radiologic changes and the presence of subacute cutaneous nodules are more associated with rheumatoid arthritis.
“In lupus there is more involvement of the kidneys, the central nervous symptom (as opposed to the peripheral nerves), and although the ANA is positive in both, anti-DNA is more positive in lupus than in Sjogren’s syndrome.
“Although photosensitivity can happen in both conditions, the very typical butterfly or malar rash (on the face) is more suggestive of systemic lupus.”
Celiac disease usually causes skin rashes, but the celiac disease blood test will not show Sjogren’s syndrome antibodies. Plus, in celiac disease, diarrhea is far more common.
If you don’t get tested for celiac disease, yet have this, and go gluten-free (completely!) for 30 days, there should be remarkable improvement in your condition.
“Thyroid disease could be associated with Sjogren’s syndrome,” says Dr. Askari.
“Conversely, primary Sjogren’s syndrome is associated with more frequent occurrence of thyroid inflammation, so-called Hashimoto’s thyroiditis.
“Neurological conditions such as MS particularly can be mistaken for Sjogren’s syndrome.
“More so, primary MS is being diagnosed in patients with Sjogren’s. Differential can be achieved by more frequent presence of specific antibodies in the blood in Sjogren’s syndrome and positive lip biopsy, but the lesions on the MRI of the brain are similar to identical in both cases.”
The lip biopsy would confirm a decreased production of salivary glands (the lips contain salivary glands), which is a hallmark feature of Sjogren’s syndrome.
“Finally, in some cases of primary Sjogren’s syndrome, the dry mouth and eyes are later manifestations, and some unusual neurological manifestations, cardiac or liver disease may be one of the first findings,” explains Dr. Askari.
“Additionally, the findings of dryness are not spontaneously expressed by the patient and mainly attributed to the age, use of drugs, etc., and they should be solicited.”
Dr. Askari’s special interests include diseases of the muscles, fibromyalgia, general rheumatology, lupus and Sjögren’s syndrome.
Lorra Garrick has been covering medical, fitness and cybersecurity topics for many years, having written thousands of articles for print magazines and websites, including as a ghostwriter. She’s also a former ACE-certified personal trainer.
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