Sjogren's disease
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- Dry eyes and a dry mouth are the main features, and looking after them protects your comfort, your vision, and your teeth.
- Sjogren's is more than dryness. It can affect the joints, skin, lungs, kidneys, and nerves, so your team checks for these over time.
- There is a small but real increase in the risk of a lymph gland cancer called lymphoma. That is one reason your team asks about new or lasting gland swelling.
- Blood tests for certain antibodies, along with eye and mouth tests, help make the diagnosis.
- If you are planning a pregnancy, tell your team. Anti-Ro/SSA antibodies matter for the baby's heart, and this is checked and planned for. See the pregnancy and rheumatic disease guide.
Understanding this condition
What Sjogren's disease is
Sjogren's disease is an autoimmune condition, which means the immune system attacks part of your own body by mistake. Here it targets the glands that make tears and saliva, so your eyes and mouth become dry. It can also affect other parts of the body, such as the joints, skin, lungs, kidneys, and nerves. It can happen on its own, or alongside another autoimmune condition like lupus or rheumatoid arthritis. It is long term, but it is manageable.
Common symptoms
The most common symptoms are dry, gritty eyes and a dry mouth that can make swallowing dry food or speaking for a long time harder. Many people also feel very tired and have aching joints. Other symptoms can include dry skin, a dry or sore mouth with more dental problems, swollen glands near the jaw, dryness elsewhere in the body, cold and colour-changing fingers, and, less often, numbness or tingling in the hands and feet.
Who gets it
Sjogren's is one of the more common autoimmune rheumatic conditions. It affects far more women than men, and it is most often recognised in middle age, though it can start at any age. Having a family history of autoimmune disease can make it a little more likely.
How it is diagnosed
There is no single test. Your team puts together your symptoms with several checks: tests of how much tear and saliva you make, eye tests that look for dryness on the surface of the eye, and blood tests for certain antibodies. Sometimes a small sample from a lip gland (a biopsy) is taken to look for the pattern of inflammation. It can take time to reach the diagnosis, so patience is often part of the process.
What to expect over time
For most people, Sjogren's is a long-term condition that is managed rather than cured, and many live well with it. Dryness and tiredness can be the hardest parts day to day. There is a small increased chance of a lymph gland cancer called lymphoma, which is why your team keeps an eye out for lasting gland swelling or new lumps. Telling your team about these early is helpful.
Living with and treating it
The goals of treatment
The aims are to ease your symptoms, especially dryness, pain, and tiredness, to protect your eyes, teeth, and other organs, and to treat any wider effects on the body when they appear. Your plan is built around what bothers you most and is reviewed over time with your team.
Treatment options
Treatment is layered. For dryness, artificial tears and eye care, saliva substitutes, sips of water, sugar-free gum, careful dental care, and a humidified room all help, and there are medicines that can boost saliva when the glands still work. For joint pain and tiredness, options include anti-inflammatory medicines, hydroxychloroquine, and short courses of steroids for flares. When Sjogren's affects an organ such as the lungs, kidneys, or nerves, stronger medicines that calm the immune system are used, chosen to fit the organ involved.
Monitoring and check-ups
Check-ups review how your symptoms are doing and whether any new features have appeared. Regular eye care and dental care are important. Your team will ask about any new or lasting swelling of the glands or lumps in the neck, since these need to be checked. If you are on medicines that calm the immune system, you will have blood tests to keep them safe, and the details are on each medicine's guide.
Flares and when they happen
Dryness tends to be steady rather than to come and go, but the wider effects, such as joint or skin inflammation, can flare. A flare may mean more pain, new swelling, or a new symptom. If that happens, your team can step treatment up for a while and then ease it back down.
Living well with Sjogren's
Small daily habits make a real difference: use eye drops regularly, sip water, chew sugar-free gum to keep saliva going, protect your teeth with careful brushing and regular dental visits, use lip balm, and try a humidifier at home. Ask about medicines or habits that add to dryness, such as smoking. Pacing your energy, gentle regular exercise, and support for low mood or vaginal dryness are all part of living well, and your team can point you to help.
Quitting smokingWhy it matters for arthritis, what helps, and free Ontario programs→Related conditions to watch for
Sjogren's can travel with other autoimmune conditions, such as thyroid disease, lupus, or rheumatoid arthritis. Dental decay and eye surface damage are more likely because of the dryness, so eye and dental care matter. There is the small lymphoma risk noted above. And if pregnancy is possible, certain antibodies need planning for because they can affect the baby's heart.
What to expect at your appointment
At a first rheumatology visit, expect questions about your dryness, tiredness, joints, and any other symptoms, and an examination of your glands, joints, and skin. You may have blood tests and be referred for eye tests or, sometimes, a small lip gland biopsy. You and your team then agree on a plan that starts with the symptoms bothering you most. Your care may involve a team, which can include your rheumatologist, an advanced practice provider or specialist nurse, and a physiotherapist, working together in whichever model your clinic uses.
The aim is to keep your symptoms and any organ effects as quiet as possible and to protect your eyes, mouth, and other organs, checked at each visit. There is no single target number in Sjogren's the way there is in some other conditions. Your plan is set with you, around what matters most to you.
ESSPRI: track your symptoms3 quick questions on dryness, fatigue, and pain, save your result and print it for your visit→How treatment is stepped up
- 1
Foundation for everyone: dryness care and protection
Everyone starts here. Regular eye lubrication, saliva substitutes and sips of water, sugar-free gum to keep saliva flowing, careful dental care, lip care, and a humidified room protect your comfort, your vision, and your teeth. Reviewing any medicines or habits that add to dryness is part of this step.
- 2
Boost secretions and treat joint and fatigue symptoms
If the glands still make some tears or saliva, medicines can stimulate them. For aching joints, tiredness, and short flares, options include anti-inflammatory medicines, hydroxychloroquine, and short courses of steroids. These are chosen to fit you.
- 3
Organ or systemic involvement
When Sjogren's affects an organ such as the lungs, kidneys, or nerves, medicines that calm the immune system are added. The choice depends on which organ is involved and how active the disease is.
- 4
Severe or refractory disease
For severe systemic problems, such as certain blood vessel or nerve involvement, stronger treatments including rituximab or cyclophosphamide may be used. These decisions are made carefully with you.
Medication guides
Plain-language guides to the medicines used for this condition. Each has a patient and a clinician view.
- Hydroxychloroquine
- NSAIDs
- Glucocorticoids
- Methotrexate
- Azathioprine
- Mycophenolate
- Rituximab
- Cyclophosphamide
The numbers, in plain terms
about 9 in 10
About 9 in 10 people with Sjogren's are women, though men can have it too.
Living well, beyond the diagnosis
The whole-person side of living with a rheumatic disease, the parts patients tell us matter most. These guides apply across conditions.
When to get medical help
- A new lump or lasting swelling in the glands near your jaw or ears, or a swollen lymph node in your neck that does not settle. Because Sjogren's carries a small increased risk of lymphoma, new or persistent swelling should be checked.
- A fever, chills, or feeling very unwell while taking medicines that lower the immune system. Infections can become serious quickly and need prompt care.
- New numbness, weakness, tingling, or pins and needles, which can be a sign of nerve involvement and should be assessed.
- Eye pain, sudden change in your vision, or light hurting your eyes, which can point to damage on the surface of the eye and needs eye assessment.
- New or worsening breathlessness or a lasting cough, which can be a sign of lung involvement.
- Severe mouth pain, fast-worsening dental problems, or white patches in the mouth that may be a thrush infection.