There’s no cure yet for Sjögren’s syndrome, but the most common symptoms can usually be treated with a combination of specific medications and self-help measures.
For dry, sore or irritable eyes:
- You can use lubricant eye drops such as hypromellose, Sno Tears or Viscotears several times a day.
- If you need eye drops more than 6 times a day, you should use a preservative-free formulation because frequent use of drops containing preservative can increase dryness and sensitivity - formulations such as artelac, hypromellose preservative free, Viscotears single-dose units, Celluvisc and Optive can be used up to hourly if you need to.
- For very dry eyes you may need to use ointments (e.g. acrilube, at night) or pseudoplastic drops such as Celluvisc or hyaluronate preparations.
If mucous and debris are causing stickiness:
- Mucolytic agents such as acetylcysteine eye drops may be helpful.
- Paraffin-based ointments such as Lacrilube can be used at night if your eyes are dry and crusty when you wake up.
If you have corneal ulcers or infections, you should NOT use any of these treatments and should seek advice from an eye specialist.
In some cases, an eye specialist may suggest punctal occlusion. This is where tiny plugs are inserted into the ducts (puncta) at the inner corners of your eyelids to reduce the drainage of tears (or eye drops) from the surface of your eye. Usually, temporary plugs are tried first and if these are helpful more permanent plugs can be inserted. If the eyes remain very dry, the puncta may be sealed by cauterisation.
Mouth and throat treatments
For a dry mouth:
- Artificial saliva such as Biotene OralBalance or BioXtra gels can be helpful.
- If you have your own teeth, mouth sprays such as Luborant or AS Saliva Orthana are recommended because they contain fluoride. It’s best to avoid Glandosane mouth spray because it’s more acidic and may increase the risk of dental decay.
- If you’re able to produce some saliva, you can take pilocarpine as a tablet (Salagen). This works by stimulating glandular tissue. Some people may notice side-effects such as sweating, flushing, a change of bowel habit or a more frequent need to urinate. These effects usually ease after a time, and it may help to start on a low dose such as 5 mg a day and gradually increase it as the side-effects decrease.
- If your mouth is severely dry and is causing other problems such as fungal infections or dry coughs, your doctor may recommend an antifungal treatment such as nystatin.
- Chlorhexidine mouth rinses such as Corsodyl may help with dental hygiene, and you can use fluoride mouthwashes or high concentration fluoride toothpastes (Duraphat) to help reduce dental decay. They should be alcohol-free so as to avoid worsening evaporation from the mouth. Non-sugar chewing gum or other dental care products or lozenges such as anhydrous crystalline maltose can also help.
For mouth ulcers:
- Adcortyl in Orabase ointment is no longer available but Oreabase ointment alone can be applied to mouth ulcers. If this doesn’t help, your doctor may prescribe betamethasone (Betnesol) tablets to dissolve in 20 ml warm water and use as a mouthwash a few times a day.
- Difflam oral rinse or spray can help relieve discomfort from mouth ulcers.
- If the ulcers are causing stickiness in your mouth or throat, a diluted chlorhexidine mouthwash such as Corsodyl will help. Alternatively you could try rinsing and gargling with a mouthwash made from a mixture of a teaspoon of salt, a teaspoon of baking powder and a litre of water.
If your salivary glands are painful, ask your doctor for further assessment and advice – they’ll check whether you have an infection. If your salivary glands aren’t infected, they may prescribe a short course of a corticosteroid called prednisolone.
Joint pain, aching or tender spots:
Extreme tiredness, lethargy, difficulty in concentrating:
- Your doctor may suggest blood tests to check your thyroid gland and to screen you for coeliac disease.
- Hydroxychloroquine may help with fatigue and joint pain.
- Lifestyle changes such as taking sensible exercise and pacing yourself in your daily activities can also be helpful.
Your doctor will want to rule out more serious problems such as infection, thyroid problems or lymphoma.
Self-help measures like wearing an extra pair of socks, will often improve your symptoms but drugs such as nifedipine, which open up the blood vessels, may be prescribed if necessary.
Painkillers or specific anti-migraine medications are usually effective.
Abdominal pain, irritable bowel syndrome:
Antispasmodic drugs, such as mebeverine (Colofac) can be helpful for disrupted bowel habits.
Aggravated menopausal symptoms:
Hormone replacement therapy (HRT) can be used if necessary, but it’s important to discuss the risk of side-effects with your doctor.
If you have a more severe form of the condition or if your peripheral nervous system is affected you may need other medications, including:
- high-dose steroids or immunosuppressive drugs such as cyclophosphamide for severe progressive disease
- painkillers, including gabapentin or pregabalin, for nerve pain.
Rituximab, which targets the B-cells of the immune system, and azathioprine or mycophenolate, which are immunosuppressant drugs, have been helpful in some people with Sjögren’s syndrome. However, the majority of people don’t need these drugs because their symptoms mostly affect their eyes and mouth.
Mild liver abnormalities aren’t common and probably won’t need treatment, but you should have regular checks. You may need specialist treatment if you develop a condition called primary biliary cirrhosis.
People with primary Sjögren’s syndrome are more likely to develop coeliac disease (gluten intolerance) and an underactive thyroid gland (hypothyroidism) so these need to be checked for.
The lungs can occasionally be affected by fibrosis, which can cause breathlessness, a dry cough and chest pain. You’ll need specialist advice if you have fibrosis but your doctor will be able to prescribe steroids for it.