Systemic lupus erythematosus SLE can be difficult to diagnose, as it has similar symptoms to several other, far more common, conditions. Diagnosis may also be difficult because symptoms can vary greatly from person to person, and they may change over time. For example, there may be periods where your symptoms are not very noticeable, or times when they flare up and become more severe. For a confident diagnosis of SLE to be made, you will need to have several symptoms of lupus and a number of blood tests may need to be carried out.
A blood test called the erythrocyte sedimentation rate ESR test can be used to determine whether there is any inflammation in your body. This can be useful in diagnosing SLE because the condition can cause many areas of the body to become inflamed swell , including the joints and internal organs.
The test works by measuring how long it takes for red blood cells to fall to the bottom of a test tube. The quicker they fall, the more likely it is that there are high levels of inflammation. An anti-nuclear antibody test checks whether there is a certain type of antibody cell in your blood, known as the anti-nuclear antibody. However, it is possible to have the anti-nuclear antibody without having SLE, so the anti-nuclear antibody test is not a definitive way of testing for the condition.
Other blood tests will also be needed to confirm the diagnosis. The level of anti-DNA antibodies increases when SLE is more active, so during a flare-up of symptoms your reading from this test may be greater than normal. Complement is a chemical in the blood that forms part of your immune system. The level of this chemical may be tested to check how active your SLE is. The level of complement in your blood decreases when SLE is more active.
Once you have been diagnosed with SLE, you will normally need regular monitoring to see how the condition is affecting your body. If you have SLE it is possible you may develop other conditions, such as kidney problems. Monitoring your condition will allow your doctor to check for these complications and, if necessary, treat them as soon as possible.
You may need to have scans, such as an X-ray , ultrasound scan , magnetic resonance imaging MRI scan or a computerised tomography CT scan to check whether SLE is affecting your internal organs.
There is currently no cure for systemic lupus erythematosus SLE , but treatments that can ease the symptoms and make it easier to live with are available.
Exposure to sunlight can sometimes make symptoms such as rashes worse, and it's important to protect your skin when in the sun. This means wearing clothing that covers your skin, a wide-brimmed hat and sunglasses. You will also need to apply sunscreen with a high SPF to prevent sunburn.
However, some people with lupus are not sun-sensitive and do not need to take extra precautions. As people get most of their vitamin D as a result of direct sunlight on the skin, there is a risk you may not get enough of this vitamin if you need to avoid sun exposure. This means you may need to make an extra effort to include good sources of vitamin D in your diet to avoid problems such as osteoporosis weakened bones , and you may be advised to take vitamin D supplements.
Non-steroidal anti-inflammatory drugs NSAIDs are a common painkilling medication that reduces inflammation in the body. For more severe pain, you will need stronger medication prescribed by your GP.
NSAIDs may not be suitable for people who have stomach, kidney or liver problems, or have had these problems in the past. They may also be unsuitable for people with asthma. If taken in high doses or over long periods of time, NSAIDs can damage your stomach lining, which may cause internal bleeding. If you need to take NSAIDs on a long-term basis, your GP will carefully monitor you to check for any problems, and you may be prescribed an additional medication called a proton pump inhibitor PPI to protect your stomach.
Hydroxychloroquine is a medicine that has been used to treat malaria , but is also effective in treating some of the symptoms of SLE, such as rashes, joint and muscle pain, and fatigue. You will usually have to take hydroxychloroquine for 6 to 12 weeks before you notice any benefit. Most expert doctors recommend people with SLE take hydroxychloroquine on a long-term basis as a way of controlling their symptoms, helping to prevent flare-ups and to prevent development of more serious problems from lupus.
Side effects of hydroxychloroquine are uncommon, but may include indigestion , diarrhoea , headaches and rashes. Hydroxychloroquine may also cause more serious side effects in a small number of people. For example, in rare cases, this medicine can cause eye damage. Contact your GP or specialist immediately if you experience vision problems while taking hydroxychloroquine. Corticosteroids are a type of medicine that help reduce inflammation quickly.
They can be very effective in treating symptoms of SLE, but are usually only prescribed if the condition is severe. If you have severe symptoms of SLE, or if you are experiencing a flare-up, you may be given a large dose of corticosteroids to help bring your symptoms under control.
As your symptoms ease, your dosage can gradually be reduced. When prescribing corticosteroids, the lowest effective dosage is always given. This is because high doses or long-term use of corticosteroids can cause side effects.
These may include:. Corticosteroids are a safe and effective form of treatment, provided they are taken correctly and under the supervision of your GP or specialist. They will tailor the steroid dose to your disease activity, to minimise side effects while effectively controlling the condition. Immunosuppressants are a type of medicine that suppress your immune system. They can help improve your symptoms of SLE by limiting the damage your immune system causes when it attacks healthy parts of your body.
Commonly prescribed immunosuppressant medicines include azathioprine, methotrexate, mycophenolate mofetil and cyclophosphamide. Immunosuppressants are sometimes used in conjunction with corticosteroids see above because these medicines may ease your symptoms more effectively when used together. Alternatively, the use of immunosuppressant medication may allow your corticosteroid dose to be reduced.
Immunosuppressant medication is usually only prescribed if you have severe SLE. This is because this type of medication is powerful and can cause side effects such as:. Methotrexate, mycophenolate mofetil and cyclophosphamide can also cause birth defects if they are taken during pregnancy, so you should use a reliable form of contraception if you are taking these medications and are sexually active.
If you are trying to become pregnant, an alternative medication such as azathioprine can be used. Tell your GP if a side effect becomes particularly troublesome, as it may mean your dose needs to be adjusted.
Taking immunosuppressant medication can increase your risk of developing an infection. This is a particularly serious concern for people with SLE, because the organ damage that can occur as a result of the condition means infections are more likely to be life-threatening.
It is therefore very important to report any symptoms of a possible infection to your GP immediately. You should also try to avoid contact with anyone known to have an infection — even if it is an infection you were previously immune to, such as chickenpox or measles. This is because your previous immunity to these conditions will probably be suppressed lowered. Rituximab is a new type of medication used in people with severe SLE that doesn't respond to other treatments.
Rituximab was originally designed to treat certain types of cancer, such as lymphoma , but it has since proved effective in treating a number of autoimmune conditions, such as SLE and rheumatoid arthritis. Rituximab works by locking on to and killing cells called "B-cells", which produce antibodies responsible for the symptoms of SLE. It is administered directly into your vein over the course of several hours, known as an infusion.
Rituximab is not currently licensed for treating SLE in the UK, but your specialist may consider it an appropriate treatment for you. If your doctor suggests using rituximab, they should tell you that there are currently some uncertainties about how effective or safe it is in treating SLE.
In rare cases, rituximab can cause a more serious allergy-like reaction. Most reactions occur during or shortly after the treatment is given, so you will be closely monitored once your treatment begins. It works by binding to growth factors that are needed for the survival of B-cells. It is given directly into your vein over several hours, known as an infusion. You might need to avoid contraceptive pills containing oestrogen as there is a very small risk that they can cause blood clots, known as deep vein thrombosis DVT.
These blood clots can be dangerous if they break off and travel around the body, such as to the lungs.
This is given by injection. It increases the risk of developing osteoporosis because it reduces the levels of oestrogen in your body, which is important for bone health. The Mirena coil, which releases progesterone only, is often a recommended option for women with lupus. In the past there has been concern about hormone replacement therapy HRT increasing the risk of flare-ups of lupus. Make sure you speak to your rheumatologist if you are planning to start HRT. But if you have joint pain, acupuncture and massage may help.
The pain relief may only last a short time to begin with, but repeated treatments may bring longer-lasting benefits. You may need to visit a private practitioner as the treatment may not be available on the NHS. Generally speaking, complementary and alternative treatments are safe if you want to try them, but you should always discuss their use with your doctor before starting treatment.
There are some risks associated with specific therapies. In many cases, the risks associated with complementary and alternative treatments are more to do with the therapist than the therapy. Most women with lupus should be able to have a baby if they wish to.
You may need to see an obstetrician with a special interest in lupus for further advice. The following drugs must be stopped before you get pregnant, because they can harm an unborn baby:.
You might also need to wait for a period of time after coming off any of these drugs before it is safe to get pregnant. If you become pregnant unexpectedly while on one of these drugs, talk to your healthcare team as soon as you can. In contrast, steroids, hydroxychloroquine and azathioprine are safe to take during pregnancy. A small number of women with very severe lupus may be advised against having a baby as pregnancy can put a strain on the heart, lungs and kidneys.
Talk to your rheumatology team or GP. However, treatment with aspirin or heparin reduces this risk, and there are now many more successful pregnancies in women who have these antibodies. If you do have kidney disease, you may have increased protein in your urine during the later stages of pregnancy.
Protein in urine could also be a sign of a condition called pre-eclampsia. This causes pregnant women to have high blood pressure and it is more common than kidney disease. If you have proteins in your blood during pregnancy it can be difficult to work out whether this is due to kidney disease or pre-eclampsia. The doctors looking after your pregnancy will check for this and consult your rheumatologist if necessary.
This means the baby may have a rash or a slow heartbeat. If this happens in one pregnancy, there is a slightly greater risk that it could happen in any further pregnancies. Versus Arthritis supports a wide range of projects that aim to prevent the onset of lupus, transform its treatment and ultimately find a cure. New therapeutic approaches that target cells and molecules believed to be part of the cause of lupus are being used to help many patients.
Further research studies should allow us to find out how these and other drugs can be used to the best effect. I was diagnosed with discoid lupus over 20 years ago. It started with a spot on the tip of my nose and rashes and discolouration on my face, including my eyebrows.
I also had indents on my fingertips. For a time, I was successfully managing my discoid lupus, thanks to being prescribed hydroxychloroquine. But four years later I started developing new symptoms. It began with night sweats, my bed clothes would be soaked. My sense of smell altered. I had pillows to prop me up. After being in hospital for a week I was off work and recovering at home. I then started to develop joint pains everywhere. Because of all these new symptoms I was referred to a rheumatology consultant , who confirmed I had developed SLE.
This was a scary and bewildering time. I was tried on different kinds of immunosuppressive drugs, and I eventually settled on methotrexate. I was also prescribed steroid tablets as well as calcium with vitamin D. I was still taking the hydroxychloroquine. It then came to light that I was developing issues with my kidneys and so I was put on a drug called mycophenolate mofetil, and I was taken off methotrexate.
The real plus for me was this resolved my joint pains. As I had been on hydroxychloroquine for a long time, last year my rheumatologist stopped prescribing me it due to concern about the risk to my eyes. With lupus, there can be confusion, frustration and resentment. My advice would be keep on top of your medication, have a healthy lifestyle, try to understand your condition and make the most of the expertise, care and help available from your healthcare professionals.
Have positivity and hope in your armoury. There is always hope, there is always help available, and you will have possibilities and options open to you.
Lupus SLE. Download versus Arthritis - Lupus information booklet. Print this page. What is lupus? There are two main types of lupus: discoid lupus systemic lupus erythematosus SLE. The rest of this information is about SLE, which we will call lupus. The three most common symptoms of lupus are: joint pains skin rashes, which may become noticeable after being out in the sun extreme tiredness, known as fatigue.
Other general symptoms are: ulcers in the mouth or nose hair loss fever weight loss swelling of the lymph glands, in the neck, armpits or groin, or under the chin depression anxiety.
Who gets lupus? There are some factors that probably make this more likely: an illness or infection strong sunlight hormonal changes, such as during puberty smoking cigarettes some medications — this is known as drug-induced lupus, and this usually gets better when people come off the medication that caused it. How is lupus likely to affect me? Treatments have improved a lot in recent years. If you have any new symptoms or concerns, talk to a member of your healthcare team.
A diagnosis of lupus is made based on symptoms, a physical examination and blood tests. Some of these tests are: Anti-nuclear antibody ANA test. Steroid creams can be used to treat skin rashes. Examples include: azathioprine ciclosporin cyclophosphamide methotrexate mycophenolate. They may be used along with steroid tablets and may allow the steroid dose to be reduced.
Biological therapies. Other treatments. Self-help and daily living. Managing a flare-up. Many of the problems caused by lupus can be made worse by smoking. For example: Lupus and smoking can both cause narrowing of the blood vessels, causing circulatory problems and increasing the risk of strokes and heart attacks.
Lupus can make you more at risk of infections involving your throat, airways or lungs. Smoking can cause long-term lung damage which can make these infections more frequent and severe. When lupus affects the kidneys it can lead to high blood pressure. Smoking can also contribute to high blood pressure, increasing the risk of strokes and worsening kidney disease.
Diet and nutrition. Looking after your mental health. Meeting others with lupus. Hormone replacement therapy HRT. Complementary medicines. Pregnancy and lupus. The following drugs must be stopped before you get pregnant, because they can harm an unborn baby: cyclophosphamide methotrexate mycophenolate leflunomide.
Research and new developments. This could lead to the development of new treatments to combat fatigue.
Research is investigating how messaging molecules influence the response produced by the body to rituximab. This could lead to new treatments. A pilot study is investigating if a medication called belimumab can be used to prevent relapses after rituximab therapy.
This could eventually provide a new treatment option for lupus patients. Back to Health A to Z. Lupus is a long-term condition that causes joint pain, skin rashes and tiredness. There's no cure, but symptoms can improve if treatment starts early.
Lupus, also called systemic lupus erythematosus, is not always easy to diagnose because it can be similar to other conditions. Symptoms include inflammation of different parts of the body including the lungs, heart, liver, joints and kidneys. The GP will usually do some blood tests. High levels of a type of antibody, combined with typical symptoms, means lupus is likely. You might be referred for X-rays and scans of your heart, kidney and other organs if the doctor thinks they might be affected.
Once lupus is diagnosed, you'll be advised to have regular checks and tests, such as regular blood tests to check for anaemia and urine tests to check for kidney problems.
Lupus often flares up relapses and symptoms become worse for a few weeks, sometimes longer.
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