How can I take control of my life with lupus?
The more you understand about your disease, the better your chance of being able to reduce the frequency of flares. To a large extent, this knowledge will come with experience of how your lupus behaves. For example, you might notice that it is triggered by exposure to sunlight, by common infections, such as colds, or by excessive stress. This knowledge might enable you to find ways of reducing your exposure to these triggers.
Many people are keen to understand as much as they can about the reasons why they may have developed lupus and the mechanisms which cause the disease. These questions cannot be fully answered at this stage, although a great deal has been learned over the last few years. If you are keen to learn more about this, you might send from one of the following publications, available from lupus UK
- 'Friendly fire: autoimmune disease explained', by D Isenberg and J Morrow. Published by Oxford University Press, 1995. ISBN 019262220X. Price £12.50 plus £1.50 postage and packing.
- 'Understanding lupus', by GRV Hughes. Published by JSC Ltd, 1996. ISBN 1901298000. Price £10.50 plus £1.50 postage and packing.
Understand the strengths and weaknesses of your medicines
Many different medicines are used in lupus, depending on the nature of your symptoms. Information about many of the drugs 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, if this is relevant to you, whether it is safe to become pregnant/father children while taking these medicines.
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. Sometimes lupus causes the WBC to be low for different reasons and this may lead to you continuing with your drug, despite a low WBC. In this case, you will be asked to have your blood monitored more frequently.
Learn how to reduce your risk of complications related to your lupus
Use sunscreen and hats!
Sunlight can trigger a rash in some patients with lupus and, in others, 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 sunBe alert for infection
Lupus means that you may be at slightly increased risk of infection, because your immune system is a little less effective than it should be. Also the drugs which are used to treat your lupus may make you more susceptible, since they are designed to “damp down” your immune responses, in order to reduce the autoimmune problems you have experienced.
Pay attention to symptoms which may mean that you have infection:
Fever (keep a thermometer at home so that you can measure your temperature)
Sore throat
Cough with green sputum
Stinging/burning when you pass urine
Unusual pain or swelling or redness in a joint
Unusual pain or swelling or redness in your skin
Consult your GP if you develop these symptoms.
Minimise your risk of cardiovascular disease
People with lupus, or any other long-term inflammatory disease, can have an increased risk of developing problems related to hardening of the arteries, e.g. heart attacks and strokes. The good news is that careful treatment of your lupus and paying attention to other risk factors can probably reduce your risk, perhaps even to normal/near normal.
The key risk factors, which you and your doctors must be aware of are:
Active lupus
High blood pressure
High cholesterol
Smoking
Diabetes
Obesity
Minimal exercise
Underactivity of your thyroid
As you can see, both you and your doctor need to work together to make sure your risk factors for cardiovascular disease are as low as they can possibly be!
Minimise your risk of osteoporosis (thin bone disease)Osteoporosis is a disease in which there is a reduced amount of bone, so the bones are weaker and there is an increased risk of fracture. In people with lupus, the risk of osteoporosis is increased by long-term treatment with steroids and by decreased exercise.
Your risk is also increased if you have a family history of osteoporosis, if you have an early menopause, an overactive thyroid, if you smoke or drink an excessive amount of alcohol. In order to ensure good bone health, it is also important to make sure that your vitamin D levels are normal, since having a low vitamin D can make the effects of osteoporosis worse. Vitamin D is made in the skin in response to sunlight and can also be absorbed from the gut. Vitamin D deficiency is more common in people who have a dark skin, since they require more sunlight on their skin to make vitamin D. You can reduce your risk of osteoporosis in lupus by:
Giving up smoking
Drinking moderately (less than14 units/week for women; less than 21 units/week for men)
Doing some weight bearing exercise at least 3 times each week
e.g. brisk walking, cycling, aerobics, gentle gym work
Eating oily fish (contains vitamin D)
If you need prolonged treament with steroids, you doctor will help to protect your bones. This may involve you taking a tablet once week to reduce bone breakdown (a bisphosphonate) and calcium and vitamin D supplements on the other days of the week.
You can find out more about osteoporosis and how to prevent it from the ARC booklet on Osteoporosis.
Stay up-to-date with your cervical smears
Women with lupus have a slightly increased risk of developing abnormal cells in the cervix (the neck of the womb). These changes can lead to cancer in some women. You are probably already familiar with the usual screening program for cervical cancer run by your GP. All you need to do is to make sure that you attend your screening appointments and that you check the results with your GP practice.
Have regular dental check-ups
People with lupus sometimes develop Sjøgren’s syndrome, in which the production of normal saliva is often affected. 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, avoiding too many sweet snacks and making sure you have regular checkups with your dentist.
Know which vaccines you should have and which to avoid
Do I need extra vaccines because I have lupus?
Vaccines are designed to protect you against infection. In lupus, you may have a slightly increased risk of infection. For people with mild lupus, this is probably not significant. At present, it is unclear whether people with mild lupus would benefit from additional vaccines. However, if you have mild lupus but are over 65 years old or you have other condition(s) which may suppress your immune responses (e.g. diabetes), you may wish to discuss vaccination with your GP or Rheumatologist.
If you have moderate or severe lupus AND you are being treated with drugs which suppress your immune system, e.g. steroids, azathioprine, mycophenolate mofetil, methotrexate, you should talk to your GP (or your Rheumatologist) about having some extra vaccines. There are no formal guidelines in this area, but we would advise the following vaccines:
Pneumococcus
Meningococcus
Influenza
Haemophilus influenzae
These vaccines are designed to protect you against flu and certain kinds of pneumonia and meningitis.
Note that your immune response to the vaccine may not work quite as well as in someone without lupus and it may be necessary to check your blood 3 months after the vaccines, to assess how well it has worked. In some people, it is necessary to give an extra booster dose, to get a good response.
Am I at greater risk from vaccination because I have lupus?In some cases, yes you are! It is important that you understand which kinds of vaccines pose a hazard to you.
If you have mild lupus and you are on no immunosuppressive drugs, the current evidence indicates that you are safe to have any kind of vaccine.
If you have moderate or severe lupus and you are taking immunosuppressive medicine (e.g. steroids (more than 10mg daily in an adult), azathioprine, mycophenolate mofetil, methotrexate), you should AVOID LIVE VACCINES.
The table lists LIVE and INACTIVATED vaccines, with the commonly-encountered vaccines at the top of the table.
| LIVE | NOT LIVE |
| Polio (Sabin) | Polio (Salk) |
| Rubella | Tetanus |
| Measles | Diphtheria |
| Mumps | Pertussis (whooping cough) |
| MMR | Pneumococcal |
| BCG | Meningococcal C |
| Yellow Fever | Haemophilus influenzae B |
| Typhoid | Hepatitis B |
| Varicella | Cholera |
| Smallpox | Rabies |
| Anthrax | |
| Plague |
If you are taking immunosuppressive medicines (e.g. more than 10mg daily of steroid, azathioprine, methotrexate, mycophenolate mofetil), always ask your doctor or nurse whether a vaccine you are going to have is LIVE. Refer to the table to check whether the vaccine you are having is LIVE or not.
The most common problem is with the POLIO vaccine.
The most usual form of Polio vaccine used is LIVE. This is sometimes called Polo Sabine and it may be given on a sugar lump. This is NOT safe to have if you are immunosuppressed.
An alternative is the inactivated Salk Polio vaccine. Your GP or Rheumatologist will have to order this specially for you, so you must give plenty of notice if you need it. Note that other members of the family, particularly young children, may be given the live (Sabin) polio vaccine. They will shed live (attenuated) polio virus in their stools for a few weeks after their vaccination. While this is not a risk to most people, people who are immunosuppressed may pick up an infection with this. This is an important issue to be aware of if you have immunosuppressed and are caring for a baby or young child/children.
Although there are reports that any kind of vaccination can cause a flare of lupus, the benefits often outweigh the risks, providing that the vaccine is NOT LIVE. You may wish to discuss the pros and cons of a particular vaccine with your Rheumatologist.
Exercise regularly
Regular aerobic exercise is good for everyone. If you have lupus, it is even more important that you look after your bones, joints and your cardiovascular health. You may also find that exercise improves your mood!
In order to get maximum benefit, you should exercise at least three times weekly. Each exercise “session” should last at least 20 minutes and be active enough to raise your heart rate and/or bring you out in a sweat. The best activities are steady and aerobic. For example:
brisk walking
jogging (not recommended if you have arthritis in your lower limbs)
swimming
cycling (or using exercise bike)
low-impact aerobics
Choose something you enjoy and, if possible, encourage family or friends to join you. It will do them good too and mean that you are more likely to exercise regularly.
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 lupus, although this is highly variable and it is impossible to predict whether it would affect your lupus.
General advice on healthy eating and weight loss can be obtained in the ARC booklet Diet and Arthritis.| | ||
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