Diseases > Sjögren’s Syndrome (SS) > What can I do about it?
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What can I do about Sjögren’s syndrome?
Being diagnosed with a chronic disease like Sjögren’s syndrome can be a little scary. The first thing is don’t panic. Take a deep breath. Although you might have been diagnosed with Sjögren’s syndrome, you are not alone. Luckily, there are effective treatments available to relieve many of the symptoms of Sjögren’s syndrome. Even if they don’t cure Sjögren’s syndrome, they can make living with the condition much more comfortable.
If you have Sjögren’s syndrome or think you may have it, your family doctor should refer you to a rheumatologist. A rheumatologist is a specialist doctor who is an expert in treating rheumatic diseases such as Sjögren’s syndrome. This type of doctor is in the best position to help you manage your condition. You may also be referred to an eye specialist if you need help managing dry eyes due to Sjögren’s syndrome.
Here are some recommendations on what you should do:
- Learn as much as you can about this disease. Education is very powerful and we’ve aimed to develop this RheumInfo website to be accessible and easy to understand for everyday people living with Sjögren’s syndrome and other forms of arthritis
- Attend your rheumatologist appointments regularly
- Get your blood tests done as suggested by your rheumatologist
- Learn about the medications used to treat Sjögren’s syndrome. The RheumInfo website has many interactive and valuable tools to help you understand these medications and their impact on your disease
Treatment of Sjögren’s syndrome
People with Sjögren’s syndrome can lead active and productive lives with the right kinds of treatment. Because Sjögren’s syndrome can be a variable disease, your treatment plan will be tailored just for you. Treating symptoms of Sjögren’s syndrome often involves a combination of good hygiene and medications.
Treating dry eyes with Sjögren’s Syndrome
Good eye hygiene and lid care can help you get the most tear production out of your tear glands. Keep your eyes clean by washing them every day with warm water. This is especially important when you wake up because debris can build up in and around the eyes while you sleep.
Get a good pair of glasses or sunglasses. This can help stop the wind from blowing across the eyes and further drying them out.
Many people with dry eyes also get relief by using artificial tears during the day and/or a jelly lubricant at night. Wearing protective eye glasses can also be helpful.
In some cases, an eye surgeon (ophthalmologist) may perform a simple procedure that blocks the tear ducts (punctual occlusion) This prevents your eyes from draining the tears that are formed by your tear glands to help keep your eyes moist.
Treating a dry mouth with Sjögren’s syndrome
It’s important that people with Sjögren’s syndrome go to their dentist regularly. People who don’t make enough saliva are more prone to cavities. That’s because saliva helps rinse food and bacteria away from the teeth. Make sure you brush your teeth regularly with fluorinated toothpaste and use an antimicrobial mouth wash to keep your teeth healthy. A good electric toothbrush (i.e. sonicare) is very important as it makes you brush for 2 minutes. Having the toothpaste in contact with the tooth for 2 minutes is important for healthy teeth.
To help relieve symptoms of dry mouth, try chewing sugar-free gum, sucking on sugarless mints, using a lubricant spray, and/or drinking plenty of fluids like plain water.
Medications for Sjögren’s syndrome
There are many medications that can be used to treat the symptoms of Sjögren’s syndrome. These are often used in combination with good eye and mouth hygiene. The choice of medications will depend on your specific symptoms. Although they do not cure the disease, they can make living with the condition much more comfortable.
A medication called pilocarpine encourages the glands to produce more fluids. This may be helpful if you have dry eyes and/or a dry mouth.
Fatigue is one of the most common symptoms in people with Sjögren’s syndrome. It’s also one of the most difficult symptoms to treat. Learning how to balance the demands in your life with your need to rest can go a long way. Medications such as prednisone can be helpful with fatigue but also have side effects.
Chronic pain can be treated with a variety of medications – if one doesn’t work for you, try another (see below).
Swollen and inflamed joints may be treated with medications typically used for people with rheumatoid arthritis. These include prednisone, steroid injections, and disease-modifying anti-rheumatic drugs (DMARDs) like methotrexate, plaquenil, azathioprine, and leflunomide.
Vasculitis or inflammation of small blood vessels can also be relieved by prednisone and DMARDs.
For more information on treatment of Raynaud’s Phenomenon, consult the “Raynaud’s Phenomenon” section of www.RheumInfo.com.
For more information about specific medications used to treat Sjögren’s syndrome, refer to the “pictopamphlets” in the Medications section of this website.
Pilocarpine has been used for the treatment of an eye condition called glaucoma for over 100 years. This medication stimulates the tear glands to produce more tears and the salivary glands to produce more saliva. Pilocarpine omes as a liquid solution (eye drops) or a gel that can be applied to the eyes, and as an oral tablet to increase saliva production.
Since pilocarpine increases the body’s production of fluids, it can cause excessive sweat production. This can be a bothersome side effect for some people.
Analgesic medications only control pain. They do nothing to control the disease or to prevent further damage to the glands. Analgesics can range from simple things like acetaminophen (Tylenol) to more potent narcotics like morphine.
Medications for chronic pain
Several different types of medication are available for the relief of chronic pain. Low doses of amitriptyline, duloxetine, gabapentin, pregabalin, and cyclobenzaprine are just a few examples. With so many chronic pain medications to choose from, if one doesn’t work for you, your rheumatologist can recommend another.
Medications like prednisone can help control inflammation. Prednisone is a very effective medication to control many of the symptoms of Sjögren’s syndrome including fatigue, arthritis, and vasculitis. High doses are typically used when any organs are involved.
In the short-term, prednisone works very well to control symptoms caused by inflammation. When used for long periods of time, prednisone can have side effects. You should to discuss the risks and benefits of using prednisone with your rheumatologist. Some patients with joint involvement also benefit from cortisone injections directly into a joint. This should be discussed with your rheumatologist.
The Disease Modifying Anti-Rheumatic Drugs (DMARDs) are medications that control symptoms and prevent long-term joint damage in people with Sjögren’s syndrome who also have arthritis. Examples include methotrexate, sulfasalazine, hydroxychloroquine(Plaquenil), leflunomide (Arava), gold (Myochrisine), azathioprine (Imuran), and mycophenolate.
DMARDs have been around for a long time and can work very well to control joint inflammation. Most DMARDs take some time before they begin to work (about 6-12 weeks). Some people might not feel any effect when they first start taking DMARDs. Even if this happens, it’s important to keep taking DMARDs to help control inflammation in the joints.
Exercises for Sjögren’s syndrome
Exercise is important to overall health. Regular physical activity can also help you deal with fatigue and pain. The level and amount of exercise you can do depends on the activity of your Sjögren’s syndrome. A good rule of thumb is to aim for 20-30 minutes of physical activity every day. This can include walking or even more vigorous types of aerobic exercise.
Physical therapy can be very helpful for people with Sjögren’s syndrome who also have joint involvement or arthritis. A trained arthritis physiotherapist can help design a physical therapy and exercise program tailored to you and your needs. They can also help you choose mobility aids and teach you how to protect your joints if you have arthritis.
Below are some useful articles on exercising with arthritis:
- Exercise and Arthritis: An article by arthritis physiotherapist, Marlene Thompson
- Exercising in a Flare: Another excellent article written by Marlene Thompson on how to cope with flares through your exercise routine.
Natural or home remedies for Sjögren’s syndrome
There are no known natural remedies or complementary therapies that have been proven to help Sjögren’s syndrome in any significant way. However, it’s important to check with your rheumatologist to make sure that nothing interacts with your medication if you choose to use natural remedies or complementary therapies.
Diet for Sjögren’s syndrome
Questions about diet and rheumatic diseases are very common. We all want to know what we can do to help ourselves. Can we change our diet to improve our immune system and help our Sjögren’s syndrome? Changing our diet gives us a sense of control over a disease which often seems to have a mind of its own.
Unfortunately, there is no diet that has been proven to significantly alter the course of Sjögren’s syndrome or other types of rheumatic disease. Following the basics of healthy eating can help improve health and well-being in everyone, including those with Sjögren’s syndrome. Keeping a healthy weight can help reduce the load on your weight-bearing joints including the spine, hips, and knees. It can also help guard against weight gain in people who take prednisone for a long time.
It’s a good idea to keep a glass of water close by when eating or at night if you have dry mouth. When dry mouth is severe, it can cause problems swallowing and result in choking.
Alcohol and Sjögren’s syndrome
Many of us like to share a glass of wine, a beer, or a spirit from time to time. Unfortunately, due to the nature of Sjögren’s syndrome, some people may turn to alcohol to help cope with the pain and distress. Alcoholic beverages are not an effective treatment for Sjögren’s syndrome. They can also interact with some medications. Examples include the DMARDs methotrexate, leflunomide, and azathioprine.
Besides, there are so many effective treatments available for Sjögren’s syndrome, you don’t need to try to manage your illness with alcohol.
Smoking and Sjögren’s syndrome
Cigarette smoking, whether you have Sjögren’s syndrome or not, has no positive effects on any aspect of your health. Smoking can worsen dry eyes and dry mouth, making these symptoms even more uncomfortable. Smoking is also recognized as a risk factor for heart disease. So if you are a smoker with Sjögren’s syndrome, quitting could be one of the best things you can do to improve your overall health.
Sjögren’s syndrome can be a different disease for different people. Your rheumatologist will work with you to develop the best treatment plan to meet your unique needs. Different medications might be needed to target different symptoms. Sometimes several medications are used at the same time to treat Sjögren’s syndrome. Other times, one medication can relieve several different areas affected by Sjögren’s syndrome.