What Is Sjogren's Syndrome?
Sjogren's syndrome is an autoimmune disease that causes your immune system to go haywire and attack healthy cells instead of invading bacteria or viruses. Your white blood cells, which normally protect you from germs, attack the glands that are in charge of making moisture. When that happens, the glands can't produce tears and saliva, so your eyes, mouth, and other parts of your body dry out. There are treatments that bring relief, though.
It's natural to worry when you learn you've got a lifelong disease that will need regular care. Keep in mind that most people with Sjogren's stay healthy and don't have serious problems. You should be able to keep doing all the things you love to do without making many changes.
Sjogren's Syndrome Causes and Risk Factors
Doctors don't know the exact cause. You may have genes that put you at risk. An infection with a bacteria or virus may be a trigger that sets the disease in motion.
For example, let's say you have a defective gene that's linked to Sjogren's and then you get an infection. Your immune system swings into action.
White blood cells normally lead the attack against the germs. But because of your faulty gene, your white blood cells target healthy cells in the glands that make saliva and tears. There's no letup in the fight, so your symptoms will keep going unless you get treatment.
Some other things can make you more likely to have Sjogren's, including:
Age. Sjogren's usually affects people over 40, but younger adults and children can get it, too.
Sex. Women are 10 times more likely to have Sjogren's than men.
Other autoimmune issues. Nearly half of all people who have Sjogren's also have another autoimmune condition, like lupus or rheumatoid arthritis.
Sjogren's Syndrome Symptoms
Sjogren's syndrome symptoms can vary from person to person. You may have just one or two, or you may have many. By far, the most common Sjogren's syndrome warning signs are:
Dry mouth that may have a chalky feeling or feel like cotton. You might have trouble swallowing or talking. In the long run, this can contribute to cavities or other tooth problems, as well as mouth infections like candidiasis (thrush).
Dry eyes that may burn, itch, or feel gritty. This can lead to light sensitivity or blurred eyesight.
You might have one or both of these issues. You could have other symptoms, too, including:
Dry throat, lips, or skin
Dryness in your nose
A change in taste or smell
Swollen glands in your neck and face
Skin rashes and sensitivity to UV light
Dry cough or shortness of breath
Trouble concentrating or remembering things
Dryness in the vagina
Swelling, pain, and stiffness in your joints
Muscle pain or weakness
Heartburn, a sensation of burning that moves from your stomach to your chest
Acid reflux, when your stomach acid flows back into your throat
Numbness or tingling in some parts of your body
- Trouble breathing
The pain and fatigue of Sjogren's syndrome may be serious enough to interfere with your daily life.
Sjogren's Syndrome Types
You might hear your doctor talk about a couple of types of Sjogren's disease:
- Primary Sjogren's syndrome. This means you have it without any other autoimmune rheumatic disease.
- Secondary Sjogren's syndrome. This term is used to describe Sjogren's that occurs along with another autoimmune or rheumatic disease, such as rheumatoid arthritis, scleroderma, or lupus.
Sjogren's Syndrome Diagnosis
Because so many people with Sjogren's also have another autoimmune disease and Sjogren's symptoms sometimes look a lot like some other diseases, like fibromyalgia or chronic fatigue syndrome, it can sometimes be hard for your doctor to give you a diagnosis.
To get clues, your doctor will give you a physical exam and may ask you questions such as:
Do your eyes itch or burn often?
Are you getting a lot of cavities in your teeth?
Does your mouth get dry? How about your lips?
Do you have stiff or painful joints?
Your doctor may ask you to get some blood tests. They will take some blood from your vein and send it to a lab to get checked.
The blood tests measure the levels of the types of blood cells you have and can show if you have germ-fighting proteins (antibodies) that many people with Sjogren's have. They can also measure inflammation in your body and the amount of certain proteins called immunoglobulins that are part of your body's infection-fighting system. High levels of these can be signs that you have the disease.
Your blood tests can also give your doctor an idea of how well your liver is working and show if there might be any issues with it.
Your doctor also may recommend a few tests related to your eyes and mouth:
Schirmer tear test. This measures how dry your eyes are. Your doctor will put a small piece of paper under your lower eyelid to see how much your eye tears up.
Slit lamp. Your doctor uses this magnifying device to get a close look at the surface of your eye.
Dye tests. Your doctor puts drops of dye in your eyes to check for dry spots.
Salivary flow test. This measures the amount of saliva you make over a certain amount of time.
Salivary gland biopsy. Your doctor will take a tiny piece of a salivary gland, usually from your lower lip, for testing. This can tell them if you have a rare condition called lymphocytic infiltrate, which is a buildup of white blood cells that look like bumps.
In some cases, they also may suggest an imaging test:
Sialogram. Your doctor uses this to show how much saliva flows into your mouth. They'll give you a shot of dye in the salivary glands in front of your ears and use a special kind of X-ray to take pictures of its flow.
Salivary scintigraphy. This imaging test is used to track how quickly a tiny amount of a radioactive substance gets to all of your salivary glands. Your doctor will give you a shot of the substance then track its progress over the next hour.
Questions for Your Doctor About Sjogren's Syndrome
What can I do for my dry eyes?
Is there anything I can do to moisten my mouth?
What can I do for joint pain?
Because of my immune system problem, is it safe for me to get a flu shot?
Sjogren's Syndrome Treatment
You'll need to take medicines throughout your life to help you manage your symptoms. You can buy some kinds in a drugstore without a prescription, while your doctor may need to prescribe stronger ones if those don't work well enough.
Drops called "artificial tears" can keep your eyes from drying out. You'll need to use them regularly throughout the day. There are also gels and ointments that you put on your eyes at night. The advantage of these thicker treatments is that they stick to your eye's surface, so you won't need to apply them as often as the drops. But because ointments they affect your vision, you use them while you sleep.
If artificial tears aren't helping, your doctor may prescribe drugs for your dry eyes, including:
Lacrisert is a tiny rod-shaped medicine. You put it into your eye with a special applicator, usually once or twice a day. Cequa and Restasis come in drops, which you use twice a day.
Another treatment option for dry eyes is a procedure called punctal occlusion. This is when your doctor puts tiny plugs into your tear ducts to block them up. This keeps tears from draining away too fast, meaning they stay on your eyes longer and help your eyes stay moist.
To help your dry mouth, your doctor may prescribe drugs that boost the amount of your saliva, including:
Supersaturated calcium phosphate rinse (NeutraSal)
Another option is a prescription for artificial saliva to keep your mouth moist. If you get yeast infections in your mouth, your doctor might prescribe antifungal medicine.
Ask your doctor, dentist, or pharmacist about mouthwashes or sprays that can relieve dryness. You might need to try several until you find a product that works for you. Get regular dental checkups, and ask your dentist if a fluoride treatment might help you.
Other Sjogren's syndrome treatments
Other treatments address some of the less common symptoms of Sjogren's. For instance, if you get heartburn or acid reflux, your doctor may give you medicines that curb the amount of acid in your stomach.
You might take over-the-counter or prescription pain relief drugs to ease joint or muscle pain. Earwax remover that you can buy at the drugstore might help with itching ears.
Your doctor may also suggest a disease-modifying antirheumatic drug (DMARD) called hydroxychloroquine (Plaquenil) to treat joint pain. It's a medication that's also used to treat malaria, lupus, and rheumatoid arthritis.
It's rare, but some people with Sjogren's get symptoms throughout the body, including belly pain, fever, rashes, or lung and kidney problems. For those situations, doctors sometimes prescribe prednisone (a steroid) or another DMARD called methotrexate (Rheumatrex, Trexall).
Sjogren's Syndrome Home Remedies
There are a lot of steps you can take on your own to help manage your symptoms.
For dry mouth:
Sip water frequently.
Chew gum or suck on candy to stimulate saliva flow and help keep your mouth moist. Be sure they're sugar-free so you don't get cavities.
Stay away from carbonated drinks and from spicy, salty, acidic, and dry foods. They can irritate your mouth.
If swallowing is difficult, stick to moist foods and sip water while you eat. Using liquid to moisten food can also help if you've lost some of our sense of taste.
Brush and floss twice a day to avoid cavities.
Don't use mouthwashes with harsh ingredients like alcohol.
Oil pulling, in which you swish olive or coconut oil in your mouth for several minutes, may help ease dryness.
Use edible moisturizing oils like coconut oil or vitamin E on dry areas of your mouth or tongue. Lip balm can soothe dry lips.
Avoid smoking and secondhand smoke, both of which make mouth dryness worse.
If you notice any symptoms of thrush, such as white patches in your mouth, pain, or a burning feeling, see your doctor or dentist.
For dry eyes, nose, or skin:
Avoid things that dry out your eyes, like smoky areas, drafty rooms, smoke, dust, and fans.
Don't wear eye shadow or use creams on your eyelids.
When using a computer, take breaks often to give your eyes a rest.
Wear wraparound sunglasses, moisture chamber glasses, or goggles to protect your eyes from drying air.
Before you go to bed and when you wake up, place a warm, wet washcloth over your eyelids for a few minutes to stimulate your oil glands and ease irritation.
Use a humidifier or vaporizer at night to ease dry eyes, nose, and mouth. The ideal humidity rate is 55%-60%, no matter what the temperature. You might consider an heating, ventilation, and air conditioning (HVAC) system with a whole-house humidifier.
Try a nasal saline spray or gel for dry nose.
Use warm water, not hot, when you bathe or shower if you have dry skin. Instead of using a towel after showering, let yourself "drip dry." Your skin will absorb the moisture from the shower.
- Apply moisturizer every day.
Tips for living with Sjogren's syndrome
Like any chronic condition, Sjogren's can take a toll on your emotional health and your body. To best manage:
Educate yourself. Learn as much as you can about the condition so you understand your options and know what to expect.
Join a support group.It can help get in touch with others who are going through the same thing. You can compare notes about symptoms and get ideas about what brings relief. The Sjogren's Syndrome Foundation can connect you with other. Or talk to your doctor about support groups in your area. Family and friends, too, can be a great source of emotional support.
Take steps to care for your mental health. Be aware of what's burdening you, and work with a counselor or your support network to deal with these things. Keep in mind that your emotional state plays a role in the health of your body and your mind.
- Request accommodations. If your condition interferes with your ability to do your job, consider asking for workplace changes like extra breaks or flexible hours.
Sjogren's Syndrome Complications
Because you don't have enough saliva, which helps protect your teeth from decay, there's a chance you may get more cavities than other people. You could also get inflammation of your gums, called gingivitis, or yeast infections in your mouth. You also may find it hard to swallow. Dryness in your nose can lead to issues like nosebleeds or sinusitis.
Dry eyes can make you more likely to get infections around your eyes that can harm your cornea. You also may notice some new issues with your vision.
Other less common health conditions linked to Sjogren's include:
Irritable bowel syndrome
Problems with your liver, like chronic active autoimmune hepatitis or primary biliary cholangitis
Conditions that affect your lungs, like bronchitis or pneumonia
Inflammation in your lungs, liver, and kidneys
Lymphoma or cancer of the lymph nodes
Sjogren's Syndrome Outlook
Sjogren's syndrome is a serious, complicated, and lifelong condition that affects your entire body. It's symptoms and long-term effects vary a lot from person to person.
There's no cure for Sjogren's. So you'll need to keep up with medicine throughout your life to get relief from symptoms. But the right treatment can help reduce how much your symptoms affect on your daily life.
It's hard to know what to expect when you have Sjogren's syndrome. But with the right care, you can lead an active life. A good support network can help you deal with the emotional issues that can come with this chronic condition.
Sjogren's Syndrome FAQs
- What is the life expectancy for Sjogren's?
Sjogren's syndrome doesn't shorten the lives of most who have it. But some people, particularly those with secondary Sjogren's syndrome, develop serious complications that can affect life expectancy. It's rare, but sometimes people with the condition also get lymphoma, a type of blood cancer.
- What are the symptoms of a Sjogren's flare?
A flare-up is when you have a sudden and serious return of Sjogren's symptoms. Often, the symptoms of flares are the same ones you noticed when you first got Sjogren's, such as fatigue or fatigue. Always tell your doctor if you have a flare, especially if you have any symptoms that are new to you. Using a journal or an app to track your symptoms can help you identify things that might trigger flare-ups so you can avoid them.