Sjögren’s Syndrome: Understanding Your Symptoms and Treatments

Sjögren’s syndrome is named after the Swedish eye specialist Henrik Sjögren (pronounced Show-grin), who first described the condition in 1933. The condition affects the glands that produce moisture and fluids such as saliva and tears, called exocrine glands. And while those with Sjögren’s syndrome are affected by a variety of symptoms, the two most common are dry mouth (xerostomia) and dry eyes (xerophthalmia).

According to the British Sjögren’s Syndrome Association (BSSA), the condition is the UK’s second most common autoimmune rheumatic disease (i). Yet it remains under recognised and is frequently under treated. Awareness of the condition is low, the charity adds, and most people don’t realise how much sufferers’ lives can be affected.

It’s thought that around half a million people in the UK have Sjögren’s syndrome (ii), though it can be difficult to be exact about how many people are affected, since not everyone may get help for their symptoms.

However, what we do know is that women are affected much more than men (it’s thought to be up to 20 times more common in women than in men, and men who do have it tend to be affected less severely), and that symptoms often start when someone is in their 30s or 40s (iii).

What causes it?

As an autoimmune condition, Sjögren’s syndrome is the result of the immune system attacking and damaging healthy parts of the body by mistake.

Your immune system helps protect your body from infection and illness by producing antibodies that fight off harmful bacteria and viruses. If you have an autoimmune condition, however, your immune system doesn’t behave normally. And instead of just attacking things that could be harmful – such as bacteria and viruses – your antibodies also attack healthy cells and tissue.

If you have Sjögren’s syndrome, your antibodies attack your exocrine glands and damage them to such an extent that they stop working effectively. According to the NHS, in Sjögren’s syndrome the immune system may also damage the nerves that control the exocrine glands, making them even less effective (iv).

Nobody knows why the immune system behaves in this way, but genetics may play a part, as may hormones, since women are much more likely to be affected by Sjögren’s syndrome than men.

People with this condition can sometimes also have other autoimmune conditions such as rheumatoid arthritis. If this happens, the condition is known as secondary Sjögren’s syndrome (if you don’t have any other related conditions it’s known as primary Sjögren’s syndrome).

What are the symptoms?

A dry mouth and dry eyes are the most common symptoms of Sjögren’s syndrome, with many people also experiencing severe tiredness and fatigue.

Dry mouth

If you have a dry mouth, it can lead to other symptoms, including oral health problems (including tooth decay and gum disease). Other associated symptoms can include the following:

• Swallowing and chewing difficulties

• Hoarse voice

• Speech difficulties

• Dry cough

• Persistent oral thrush infections

• Changes in your sense of taste

• Mouth ulcers

• Cracked skin at the corners of your lips

• Swollen salivary glands between your jaw and ears

Dry eyes

Sjögren’s syndrome-related symptoms of dry eyes can become worse in places where the air is dry – for instance when you’re travelling by air, when you’re in a windy or smoky environment or an air-conditioned building. Eye dryness can cause the following:

• Burning or stinging

• A feeling of having grit in your eye

• Itching

• Swollen and irritated eyelids

• Sticky eyelids in the morning

• Light sensitivity (photophobia)

• Eye tiredness

• Discharge from the eyes

• Blurred vision

There are, however, other causes of eye dryness – find out more by reading Dry Eye Syndrome: How to Relieve Your Symptoms.

Meanwhile, other symptoms that can affect some people with Sjögren’s syndrome include the following:

• Dry, itchy skin

• Vaginal dryness

• Skin rashes

• Muscle and joint pain

• Cognitive difficulties, including problems with concentration, memory and reasoning

• Sleep difficulties

• Anxiety

• Depression

 

Are there any complications?

Sjögren’s syndrome can sometimes lead to complications. For instance, if you don’t treat dry eyes the front part of your eyes can become damaged, leading to corneal ulcers and possible permanent vision problems. Other complications can include the following:

• Lung problems including infections and scarring of the lungs (if you’re a smoker, giving up smoking may help prevent these)

• Pregnancy problems – though the risk is small these can include serious heart problems in the baby, as well as a rash in the baby that can last a few weeks. Both of these complications can be detected by a blood test that should automatically be given to pregnant women with Sjögren’s syndrome.

• Cancer (the risk of developing non-Hodgkin lymphoma – a type of cancer that affects the lymphatic system – is thought to be higher in people with Sjögren’s syndrome than others).

As well as rheumatoid arthritis, some people with secondary Sjögren’s syndrome can also be affected by another related condition such as:

• Raynaud’s phenomenon

• Lupus

• Peripheral neuropathy (loss of sensation in the hands and feet)

• Kidney problems (including kidney stones)

• Underactive thyroid

• Irritable bowel syndrome

 

Treatments and self help

There’s currently no cure for Sjögren’s syndrome, so the treatments aim to help relieve the symptoms. There are also several things you can do for yourself, depending on which symptoms affect you.

Dry eyes  

Self-help strategies include avoiding dry or smoky environments as well as doing other things that can make your eyes drier, such as reading or watching screens for a long time. Some medicines can cause dry eyes too – if you suspect a medicine you’re taking is affecting your eyes, speak to your GP about whether or not you could try an alternative. It’s also important to have an eye check-up with your optician as regularly as they recommend.

There are products you can buy over-the-counter at pharmacies that can help with dry eyes, the most widely used of which are drops known as artificial tears. However, if you find you’re using artificial tears frequently – that is, more than three times a day – try to avoid products that contain preservatives, as these can damage your eyes if you use them a lot.

Medical treatments include pilocarpine tablets that help you produce more tear fluid. Your doctor or an eye specialist may also prescribe anti-inflammatory drops if artificial tears haven’t helped. You may also be advised to have a surgical procedure that blocks your tear ducts, which means your tear fluid doesn’t drain away, making your eyes feel less dry.

Dry mouth 

Taking care of your oral health can be helpful, so always try to brush your teeth with fluoride toothpaste twice a day for at least two minutes each time. You should also consider using an antibacterial mouthwash and have regular dental check-ups (your dentist will tell you how often you need them).

Other things you can do to keep your mouth feeling less dry include drinking plenty of water and chewing sugar-free gum. Smoking can make your mouth drier too, so think about giving up if you’re a smoker. Also try not to drink too much alcohol, as alcohol can have a dehydrating effect on your body.

Meanwhile you can buy products called saliva substitutes from pharmacies that may help relieve mouth dryness – these include gels, sprays and lozenges. Pilocarpine tablets – which are only available on prescription – may also help produce saliva in people with very dry mouths.

There are also ways to treat some of the other symptoms of Sjögren’s syndrome, including:

Dry skin

Avoiding soap as well as products that contain fragrance may be helpful. Instead, try using products designed for dry skin conditions called emollients – these include moisturisers as well as soap substitutes.

Vaginal dryness

Products including lubricants and vaginal moisturisers can bring relief from dryness, or you may want to ask your doctor about a suitable type of hormone replacement therapy (HRT).

Muscle and joint pain

Some people with Sjögren’s syndrome may be prescribed a medicine called hydrooxychloroquine for joint and muscle pain and stiffness, but this treatment isn’t suitable for everyone, and in very rare cases it can cause vision problems. Instead, self-help methods are recommended, including regular exercise, weight loss if necessary, and taking anti-inflammatory painkillers such as ibuprofen (stronger painkillers can be prescribed by your GP).
 

Should you change your diet?

If you have Sjögren’s syndrome you’ll probably experience a dry mouth, which may make eating certain foods more difficult. If it hurts to eat, you could try eating more soft or creamy foods and avoid hard or crunchy foods.

But should you make other changes to your diet? As Sjögren’s syndrome is an autoimmune condition there may also be some benefit in adopting a diet that’s rich in anti-inflammatory foods, since inflammation is thought to play a major part in autoimmune disease symptoms (iv). 

The US-based Sjögren’s Foundation suggests following an anti-inflammatory diet is an important part of living well with a chronic disease like Sjögren’s (vi):

Eat more…

• Colourful fruits and vegetables (go for foods that are deep red, yellow, orange and green in colour as they provide vitamins, minerals, fibre and antioxidants that may help reduce inflammation).

• Healthy fats (these include the omega-3 fats found in oily fish such as salmon, mackerel, sardines, pilchards and herring, as well as foods such as avocados, nuts, seeds and extra virgin olive oil).

• Fibre (try adding a few tablespoons of ground flax seeds to your meals each day to get more soluble and insoluble fibre).

• Organic meat (if you’re a carnivore, try to eat moderate amounts of grass-fed beef or organic free-range chicken).

• Herbs and spices (garlic, ginger and turmeric add an anti-inflammatory component to your diet).

 

Eat less (or avoid altogether)…

• Trans/hydrogenated fats (these are fats that are created during food manufacturing and are often found in fast food, cakes and biscuits – they are also considered to be pro-inflammatory fats).

• Refined oils (such as safflower, corn and canola oils).

• Highly processed foods (including bread, pasta, cakes, confectionary, fruit juice and foods containing corn syrup).

• Non-organic meat.

• Foods associated with allergy (including milk products, eggs, gluten and peanuts, all of which can cause inflammatory reactions in some people).

• Artificial sweeteners and preservatives

It is also a good idea to make food from fresh ingredients whenever possible and avoid most packaged foods with a long list of ingredients.

However, if you’re considering cutting out an entire food group – dairy foods, for example – always consult your GP or a dietician/nutritionist first, as you may be at risk of dietary deficiencies.

Natural support for Sjogren’s syndrome

Sjögren’s syndrome is a long-term condition that can affect your daily life. Treatments and self-help measures can help make day-to-day living easier, but you may also want to consider taking one or more nutritional supplements too.

Vitamin D

According to a review published in the journal Autoimmunity Reviews, there is evidence that many people with autoimmune conditions are deficient in vitamin D (vii). The review also found vitamin D may play a part in the development and progress of Sjögren’s syndrome, and that there may be a possible benefit in taking vitamin D in those with the condition.
 

Another study suggests low levels of vitamin D may be linked with the development of nerve damage (neuropathy) and cancer (lymphoma) in people living with Sjögren’s syndrome (viii). The researchers who carried out the study also suggest there may be a benefit in taking vitamin D supplements in those with Sjögren’s syndrome.

The recommended form of Vitamin D is Vitamin D3 or cholecalciferol, as it’s the natural form of vitamin D that the body makes when it’s exposed to sunlight. Vitamin D3 supplements are available in tablet form, and now you can get them in veggie-friendly drops too.

However most vitamin D3 supplements are made from the fat of lamb’s wool, which means they’re unsuitable for vegans. The good news is that vegan vitamin D3 supplements sourced from lichen are now more widely available.

Vitamin B12

Several studies also suggest Sjögren’s syndrome may be linked with a deficiency of vitamin B12, with one preliminary study showing that B12 deficiency may be more common in those with primary Sjögren’s syndrome compared with others who have the secondary form of the condition (ix). Since vitamin B12 deficiency can cause a form of anaemia, some people with Sjögren’s syndrome may benefit from taking a supplement.

High-strength fish oils

The omega-3 essential fatty acids found in oily fish such as salmon, fresh tuna, sardines, mackerel and pilchards is widely thought to help reduce inflammation, with research suggesting it may help reduce joint and muscle pain as well as improve skin health and mood (x). Eating more oily fish may be helpful, but if you don’t like eating fish you may like to try a high-strength fish oil supplement. If you’re a vegetarian or vegan you can still benefit from an omega-3 supplement, thanks to the availability of products that contain the natural triglyceride (TG) form of omega-3 This is sourced from plant organisms called microalgae rather than fish.

Turmeric

The main active ingredient in turmeric – the spice that gives curry its yellow colour – is called curcumin, a compound that’s thought to have a strong anti-inflammatory effect. Studies suggest that it may be as effective of some conventional anti-inflammatory drugs, but without the side effects associated with them (xi). You can add turmeric to your food or take it in the form of a nutritional supplement.

 

Living with Sjogren’s syndrome can be a challenge, but this guide shows there are several things you can do that may help make your symptoms more comfortable. Find more helpful advice for a range of health conditions in our health library.

References:

1. Available online: https://www.bssa.uk.net/pdfs/information-sheet.pdf

2. Available online: https://patient.info/allergies-blood-immune/sjogrens-syndrome-leaflet

3. Available online: https://patient.info/doctor/sjogrens-syndrome-pro

4. Available online: https://www.nhsinform.scot/illnesses-and-conditions/immune-system/sjogrens-syndrome#causes-of-sjogrens-syndrome

5. Available online: https://medlineplus.gov/autoimmunediseases.html

6. Available online: https://www.sjogrens.org/living-with-sjogrens/survival-tips

7. Garcia-Carrasco. M., et al. Vitamin D and Sjögren syndrome. Autoimmun Rev.. 2017 Jun. 16(6):587-593. Available online: https://www.ncbi.nlm.nih.gov/pubmed/28411165

8. Agmon-Levin. N., et al. Low levels of vitamin-D are associated with neuropathy and lymphoma among patients with Sjögren’s syndrome. J Autoimmun. 2012 Sep. 39(3):234-9. Available online: https://www.sciencedirect.com/science/article/pii/S0896841112000856

9. Andres. E., et al. Primary Sjögren’s Syndrome and Vitamin B12 Deficiency: Preliminary Results in 80 Patients. Am Jour Med . June 2006. Volume 119, Issue 6, Pages e9–e109. Available online: https://www.amjmed.com/article/S0002-9343(05)00810-7/fulltext

10. Simopoulos. A.P. Omega-3 fatty acids in health and disease and in growth and development. Am J Clin Nutr. 1991 Sep. 54(3):438-63. Available online: https://www.ncbi.nlm.nih.gov/pubmed/1908631

11. Takada. Y., Bhardwaj. A., Potdar. YP., Aggarwal. B.B. Nonsteroidal anti-inflammatory agents differ in their ability to suppress NF-kappaB activation, inhibition of expression of cyclooxygenase-2 and cyclin D1, and abrogation of tumor cell proliferation. Int Oncogene. 2004 Dec. ;9;23(57):9247-58. Available online: https://www.ncbi.nlm.nih.gov/pubmed/15489888

12. Lal. B., et al. Efficacy of curcumin in the management of chronic anterior uveitis. Phytother Res. 1999 Jun. ;13(4):318-22. Available online: https://www.ncbi.nlm.nih.gov/pubmed/10404539

13. Chainani-Wu. N. Safety and anti-inflammatory activity of curcumin: a component of turmeric (Curcuma longa). J Altern Complement Med. 2003 Feb. ;9(1):161-8. Available online: hhttps://www.ncbi.nlm.nih.gov/pubmed/12676044

 

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Disclaimer: The information presented by Nature's Best is for informational purposes only. It is based on scientific studies (human, animal, or in vitro), clinical experience, or traditional usage as cited in each article. The results reported may not necessarily occur in all individuals. Self-treatment is not recommended for life-threatening conditions that require medical treatment under a doctor's care. For many of the conditions discussed, treatment with prescription or over the counter medication is also available. Consult your doctor, practitioner, and/or pharmacist for any health problem and before using any supplements or before making any changes in prescribed medications.

 

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