Rheumatoid arthritis (RA) is frustrating enough on its own. But according to research published in Clinical Rheumatology in March 2020, up to 30 percent of people with RA also have a condition that affects the tear and salivary glands, causing dry mouth, dry eyes, dry skin, and additional symptoms that further aggravate their arthritis. It’s called Sjögren’s syndrome (SS).
Sjögren’s Syndrome Symptoms: Dry Eyes, Dry Mouth, Dry Skin, and Other Complications
Like rheumatoid arthritis, Sjögren’s syndrome is an autoimmune disorder: a condition that develops when your body is attacked by its own immune system. Complicating your care, Sjögren’s syndrome brings its own list of symptoms, including a painful burning or gritty feeling in the eyes that can leave you prone to eye infections. You may also have a dry sensation in your mouth that increases the chances of dental decay or gum inflammation. In more extreme instances, Sjögren’s syndrome can affect other parts of the body, including your skin and internal organs like the lungs, liver, and kidneys, notes the Mayo Clinic.
Sjögren’s syndrome can occur by itself (primary Sjögren’s syndrome) or in conjunction with rheumatoid arthritis and other rheumatic conditions (secondary Sjögren’s syndrome), explains Philip L. Cohen, MD, the chief of rheumatology at Temple University Hospital and a professor emeritus of microbiology and immunology with the Lewis Katz School of Medicine at Temple University in Philadelphia. “Secondary SS usually occurs long after the diagnosis of RA and generally is less severe than primary SS.”
In order to prevent complications like eye damage or tooth loss, the American College of Rheumatology recommends that people with SS see both an ophthalmologist and a dentist regularly. If you can afford it or your insurance allows it, Dr. Cohen advises a dental visit every three months, instead of the usual twice a year.
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Living With Rheumatoid Arthritis and Sjögren’s Syndrome
Neen Monty, of Canberra, Australia, is no stranger to the demands of living with rheumatoid arthritis and Sjögren’s syndrome — the pain and swelling of joints and the dry mouth and dry eyes. She was diagnosed with rheumatoid arthritis in 2006 and then, about a year later, with Sjögren’s syndrome as well. Her struggles with her health inspired Monty to start a blog for others with arthritis called Arthritic Chick.
Monty admits that dealing with rheumatoid arthritis all on its own was very challenging and that coping with both rheumatoid arthritis and Sjögren’s syndrome — among other diagnoses she’s received — can feel overwhelming at times.
“The No. 1 challenge of RA is the pain,” she says. “I have pain every day, but since I started on JAK inhibitors, my RA is finally better controlled. I only have severe pain flares about once a fortnight, when that used to be daily. JAK inhibitors have been life-changing for me.” Her Sjögren’s symptoms also used to be debilitating — her eyes would become so painful and light-sensitive that she couldn’t drive and would “just have to sit in a darkened room for a few hours with my eyes closed.” While this used to be more frequent for Monty, it happens only every couple of months now.
Monty has met the challenges of rheumatoid arthritis and Sjögren’s syndrome by being diligent about taking her prescribed medication. “They are worth the side effects and inconvenience of being tied to a medication dosing schedule.” She also fights to keep a good attitude, no matter what symptoms she faces on a specific day. “For me, the most important thing is attitude,” Monty says. “I always try to stay positive. I try not to dwell on the pain, and I don’t talk about it much. I focus on what I can do rather than what I can no longer do. I give myself credit and I don’t beat myself up when I have bad days. These are outside of my control, and not my fault. I have also studied meditation and mindfulness, and this helps me manage pain and keep a positive attitude as well.”
Monty is not able to exercise as often or as intensely as she used to, but even when she can’t work out, she’s able to do some stretching, which helps. Monty also focuses on eating a healthy diet, which she believes strengthens her fight against rheumatoid arthritis and Sjögren’s syndrome.
RA and Sjögren’s Syndrome: Treatment and Coping Tips
Cohen seconds Monty’s opinion that strict adherence to medication is the best course of action for both rheumatoid arthritis and Sjögren’s syndrome. While biologic therapy has proved beneficial for rheumatoid arthritis, Cohen notes that the evidence is mixed when it comes to treating Sjögren’s syndrome. People with Sjögren’s may be prescribed hydroxychloroquine (Plaquenil), an antimalarial drug, as a systemic treatment, according to the Mayo Clinic. Though the evidence for the effectiveness of that, too, is “ambiguous” says Cohen, pointing out that there’s an “unmet need” in treating Sjögren’s syndrome.
Local therapies — for the dryness of the eyes and mouth — are often helpful for Sjögren’s syndrome. Sometimes doctors treating dry mouth will prescribe systemic drugs that increase secretions, such as Salagen (pilocarpine) or Evoxac (cevimeline). Eye physicians may also prescribe eye drops, such as Restasis (cyclosporine), for dry eye symptoms.
These medications can be expensive, though, depending on your insurance coverage, and some small steps may bring big relief. Over-the-counter saline eye drops (artificial tears) can soothe dry eyes, and special nonprescription toothpastes and oral rinses can alleviate dry mouth. Avoid sweets, but try sugarless gum or candy to counter mouth dryness and stimulate saliva, as well. And drink water frequently to stay hydrated.
Additional reporting by Deborah Shapiro.