How can I take control of my life with Sjögren’s Syndrome?
Notice how your Sjögren’s Syndrome behaves
With experience, you might notice that “flares” or periods of worsening of your Sjögren’s Syndrome is triggered by particular environmental stimuli, e.g. exposure to sunlight, common infections, such as colds, or by excessive stress. This knowledge might enable you to find ways of reducing your exposure to these triggers.
Report any unusual lumps and bumps to your doctor
This is generally a good idea when you have an autoimmune disease. However, people with Sjögren’s Syndrome have an increased risk of developing a cancer of the lymphatic system, called lymphoma. The risks of this are small and it is usually treatable. You can help to look out for this by watching out for unusual lumps in places where there are lymph nodes. The main sites to check are:
neck – front and back
armpits
groins
Note that there are many reasons why lymph nodes may swell and it will NOT usually be because of lymphoma. However, it is still helpful if you get used to checking these areas.
Understand the strengths and weaknesses of your medicines
Information about many of the drugs you may be prescribed is available in the Drug Information section of this website. It is important that you understand why your doctor has prescribed these medicines, what important side-effects could be caused by them and how you can help to avoid them.
Understand your monitoring booklet
For a full-size image click here
If you are prescribed immunosuppressive drugs, such as azathioprine, methotrexate, mycophenolate mofetil or sulphasalazine, you will need to have your blood checked regularly. This is done because these medicines can cause liver damage or damage to your bone marrow (where your blood cells are made). Although these problems do not usually occur, it is important to detect them as soon as possible if they do happen.
In particular, your doctors will look at two tests. Generally, if
- EITHER
- White cell count (WBC or WCC) is less than 4
- OR
- ALT or AST (a liver test) is greater than 100
your drug should be stopped and its further use discussed with your Rheumatologist.
Learn how to reduce your risk associated with complications related to your Sjögren’s Syndrome
Have regular dental check-ups
People with Sjögren’s Syndrome, have a reduction of normal saliva. Since saliva contains antibodies and other molecules which help to protect your teeth, this can mean an increased risk of tooth decay. You can reduce this risk by cleaning your teeth carefully, using fluoride-containing saliva replacements, avoiding too many sweet snacks and making sure you have regular checkups with your dentist.
Use sunscreen and hats!
In people with Sjögren’s Syndrome, who have anti-Ro antibodies, sunlight can trigger a rash in some patients or can make the disease generally active. However, this does not mean you cannot get out and about when the sun is shining! You can reduce your exposure to the sun by:
sitting in the shade rather than in the direct sunlight
using high factor (25 or above) sunblock
using loose cotton clothing/wide-brimmed hats etc to limit the exposure of your skin to the sun
Exercise regularly
Regular aerobic exercise is good for everyone. If you have Sjögren’s Syndrome, abnormal fatigue is often a very troublesome symptom. It is still important to get exercise. Some helpful tips are:
Plan you exercise for a time of the day when you feel well
Learn to pace yourself - start very gently and build up slowly
Try to exercise gently at least three times each week
Choose something you enjoy and, if possible, encourage family or friends to join you.
Recommended Exercises
brisk walking
swimming
cycling (or using exercise bike)
low-impact aerobics
Tai Chi
Eat healthily
There is a great deal of confusion about the role of diet in autoimmune diseases. Many of the statements or claims you will read in magazines are not based on reliable evidence. However, diet can certainly influence your health overall and it may have an influence your Sjögren’s Syndrome, although this is highly variable and it is impossible to predict.
General advice on healthy eating and weight loss can be obtained in the ARC booklet Diet and Arthritis.Minimise your risk of cardiovascular disease
Many people with long-term inflammatory diseases have been shown to have an increased risk of developing problems related to hardening of the arteries, e.g. heart attacks and strokes. There is no firm evidence at present, to indicate whether this is an important problem in people with Sjögren’s Syndrome. However, it is a good idea to pay attention to your general health. This includes making sure that your risk factors for cardiovascular disease are as low as possible.
Make sure you have discussed these possible risk factors with your GP or Rheumatologist. If you have any of these risk factors, your doctor will be able to help or advise you in how to reduce them.
High blood pressure
High cholesterol
Smoking
Diabetes
Underactivity of your thyroid
In addition, obesity and minimal exercise are also small risk factors for cardiovascular disease, so consider how you can tackle these, if relevant in your case.
Know which vaccines you should have and which to avoid
If you are taking immunosuppressive medicine, consult the section on Vaccines under Drug Information .| | ||
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