What is lupus?
Lupus is a long-term condition that can cause inflammation in the skin, organs, and in various other places in the body.
It’s an autoimmune condition. The immune system, which normally protects us against infection and illness, starts to attack the body’s own tissues instead.
There are two main types of lupus:
- discoid lupus
- systemic lupus erythematosus (SLE).
Discoid lupus only affects the skin, causing rashes. People can get it in one small area on the skin, or it can be widespread.
SLE can affect many parts of the body in several ways. It can range from mild to severe. There is no cure, but early treatment can help to keep symptoms under control.
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.
Some people with lupus will only have these symptoms, though they can still have a big impact on daily life.
Other general symptoms are:
- ulcers in the mouth or nose
- hair loss
- weight loss
- swelling of the lymph glands, in the neck, armpits or groin, or under the chin
Lupus can affect many different parts of the body, and when internal organs such as the heart, lungs, brain or kidneys are involved it can be much more serious. It’s important to have regular check-ups, and to report any new symptoms to your healthcare professionals.
Most people will only have one or a few of the possible symptoms, and many people find that the symptoms come and go.
Skin and mouth
It’s common for a rash to develop over parts of the body that are exposed to the sun, most commonly the face, wrists and hands. A butterfly-shaped rash over the cheeks and the bridge of the nose is common in lupus.
Some people notice that their fingers change colour in cold weather, going first very pale, then blue and finally red. This is called Raynaud’s phenomenon and is caused by narrowing of the blood vessels, which reduces the blood supply to the fingers or toes. It can happen in the cold or in stressful situations.
You may develop mouth ulcers. More rarely, ulcers can occur in the nose.
General thinning of the hair is fairly common among people who have lupus. In some cases, there may be patches where the hair doesn’t grow, and this is called alopecia. Rarely alopecia can be more severe and affect large areas of the scalp. This can be distressing, but once a flare-up is brought under control the hair will usually grow back.
Joint pain is common in lupus, especially in the small joints of the hands and feet. The pain often moves from joint to joint.
Joint pain, swelling and stiffness can be the main symptoms for some people with lupus. In most cases, lupus is unlikely to cause permanent damage or change the shape of joints. But it can sometimes cause serious joint problems. It’s important you tell your doctor or specialist nurse if you have any new joint pain.
A small number of people with lupus have joint hypermobility. This is when joints are very flexible. It can lead to problems such as joint pain, poor balance and in rare cases dislocation – when a joint pops out of place.
Pain from muscles and joints may be due to a condition called fibromyalgia. This is a widespread pain syndrome and is thought to be caused by an imbalance in the central nervous system that controls and processes pain signals. It’s more common among people with lupus.
If you have pain in your groin, you should see your doctor. This could be a sign of a more serious complication called avascular necrosis. This is when there is a loss of blood supply to bone, which can cause bone damage. Steroid treatment can make this more likely.
People with lupus can have problems with their kidneys. Kidneys play several important roles, including helping to remove toxins from the blood. Until kidney damage is severe, it has no visible symptoms. It often causes high blood pressure.
In most cases if spotted early, kidney problems caused by lupus can be treated successfully. Medication can prevent permanent kidney damage.
Kidney function tests will be a part of your regular check-ups if you have lupus.
Blood and blood vessels
Lupus may also cause anaemia, which is when you have a lack of red blood cells. These cells carry oxygen around the body, and if you don’t have enough of them you can get out of breath and tire quickly. If you have these symptoms you should tell your doctor or nurse specialist.
People with lupus might also have a low number of platelets, cells that help the blood to clot. If you find that you are bruising easily or notice bleeding from the gums or nose you should let your doctor or nurse specialist know. Lupus can also affect your white blood cells, which are important in fighting infections.
Some people with lupus are more at risk of developing blood clots in veins or arteries. This problem is usually caused by antiphospholipid antibodies. These autoantibodies can also affect pregnancy, causing an increased risk of miscarriage.
If blood clots occur blood thinning medication will be needed.
Brain and nervous system
People with lupus may experience anxiety or depression. Some people have dizziness, memory loss or confusion. Lupus can cause fits similar to epilepsy, or very rarely, feelings of paranoia.
Heart and lungs
Lupus can cause high blood pressure, particularly if the kidneys are involved. Steroid tablets, which are often used to treat lupus, can raise blood pressure when used in high doses.
Lupus can also make you more likely to have high cholesterol. Having high levels of cholesterol and high blood pressure can increase the risk of heart attack or strokes.
You should have your blood pressure and cholesterol checked regularly and treated if necessary. Having a healthy diet, a healthy lifestyle, exercising regularly and avoiding foods high in saturated fat and salt, can reduce your cholesterol and your chances of having a heart attack or stroke.
Occasionally lupus directly affects the heart and lungs. More often, it causes inflammation in the lining tissues around the heart, known as pericarditis. It can also cause inflammation in the lining of the lungs, known as pleurisy. Both these conditions cause breathlessness and sharp pains in the chest.
Rarely, large amounts of fluid develop in these lining layers, causing severe breathlessness.
Lupus may also cause narrowing of the blood vessels. This can lead to an increased risk of angina, when a reduced amount of blood gets to the heart muscle.
People with lupus can experience swelling of the lymph glands, which may cause discomfort. If you notice this happening, and especially if you also have high temperatures and are losing weight, talk to your doctor or nurse specialist.
Less frequently, lupus can affect the lining tissue of the gut, the gut itself, pancreas, liver or spleen, all of which can cause pain in the stomach.
Very rarely, lupus can cause a painful red eye or changes in your eyesight. If you have any symptoms affecting your eyes, it’s important to see a doctor as soon as possible. If left untreated, eye problems caused by lupus can lead to permanent damage to your eyesight. These issues are very treatable.
Sometimes people with lupus can have an underactive thyroid. This is when the thyroid glands in the neck don’t produce enough hormones. This can lead to problems such as tiredness, weight gain and depression.
A condition known as Sjögren’s syndrome, which causes severe dryness of the eyes and mouth, is more common among people with lupus.
Who gets lupus?
Lupus is much more common among women than men. It’s more common among women of Chinese origin and most common in women of African or Caribbean origin. It tends to be more severe in those of Afro-Caribbean origin. Rarely, lupus can affect children, but it’s unusual before the age of five.
It’s unclear why some people get lupus. It’s thought to be the result of a mix of genetic, hormonal and environmental factors. For example, the immune system makes proteins called antibodies that fight infection. In lupus, the body also makes autoantibodies that are similar, but attack the body’s own tissues instead. We’re not sure why this happens. 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.
Lupus isn’t directly passed on from a parent to their children, but if you have a close relative with lupus then you may be at increased risk of developing it.
Lupus isn’t contagious, so you can’t catch it from anyone else.
How is lupus likely to affect me?
It’s difficult to say how lupus will affect you, because it can vary greatly between people who have it.
Treatments have improved a lot in recent years.
However, it is still a serious condition and can even be life-threatening in some situations when people’s vital organs are affected. But most people don’t have the serious complications.
If you have lupus, you will need regular check-ups with your doctors and nurses to look for any of the serious complications linked with the condition.
Because of the risk of serious complications, having a healthy diet and lifestyle, and exercising regularly is important.
If you have any new symptoms or concerns, talk to a member of your healthcare team.
It can be difficult to make a diagnosis of lupus because it doesn’t affect any two people exactly the same. There are also many other conditions it resembles.
However, the earlier someone is diagnosed with lupus and treatment is started, the better their chances of keeping this condition under control.
A diagnosis of lupus is made based on symptoms, a physical examination and blood tests.
There are a number of tests that can help lead to a diagnosis of lupus or rule it out. These can then be used to monitor how well treatments are working. Some of these tests are:
Anti-nuclear antibody (ANA) test
About 95% of people with lupus test strongly positive for anti-nuclear antibodies (ANA), but the test can sometimes be positive in people who don’t have lupus, so it can’t confirm the diagnosis.
Anti-double-stranded DNA (anti-dsDNA) antibody test
About 70% of people with lupus have these antibodies. A positive test means that lupus is highly likely as the test is hardly ever positive in people who don’t have lupus. Levels of this antibody can go up as the lupus becomes more active and will go down if treatment is effective.
Anti-Ro antibody test
If you test positive for this antibody you may be more likely to get skin rashes and suffer from dry eyes or a dry mouth, known as Sjögren’s syndrome. Rarely, this antibody can pass across the placenta during pregnancy – this is the organ that passes food through from a pregnant woman to her unborn baby. If you carry the anti-Ro antibody and decide to have a baby, your pregnancy will be more closely monitored.
Antiphospholipid antibody test
A positive test for these antibodies may mean an increased risk of miscarriage and developing blood clots. These antibodies can come and go so these tests can be repeated.
Kidney and liver function tests
These include blood and urine tests, which are carried out regularly so any problems caused by the lupus or by drug treatment can be picked up and dealt with quickly.
A simple urine test can show if there’s protein or blood in the urine. This test can help doctors recognise a problem in the kidneys at an early stage. Further tests may be carried out if necessary.
Blood cell counts
Blood cell counts can help to show whether the bone marrow is affected, either by your condition or the drugs.
Scans and x-rays
Different types of scans and x-rays can assess how well your heart, lungs, liver and spleen are working.
There’s no cure for lupus at present. However, the condition can respond well to a number of drugs. The earlier treatment is started, the more effective it’s likely to be.
The drugs used to treat lupus will depend on how serious it is and which parts of your body are affected. Your treatments will probably be changed or adjusted as your symptoms flare up or improve. Many drugs used to treat lupus were originally developed for other conditions but were later found to be useful in lupus.
What about side effects?
All drugs have some potential side effects, and you and your doctor will need to balance the risk of side effects with the need to control your symptoms. Sometimes this may mean taking additional medications to protect against the side effects of others.
Treatments such as calcium, vitamin D tablets and drugs called bisphosphonates may be given to guard against the bone-thinning condition osteoporosis. This condition can be a risk for people who take steroids at high doses or for long periods. You may be given DMARDs instead of high doses of steroids.
If you have lupus, and especially if you’re on a DMARD or biological therapy, you’ll be more prone to infection. Take care to avoid contact with people with infectious diseases like chickenpox or if they’ve recently been in hospital. You should discuss your vaccination status with your rheumatologist or GP. You might need to avoid live vaccines.
If you suffer from a severe infection or require antibiotics you may need to stop your DMARD treatment for a short time, and restart them once you’ve recovered from the infection.
Please visit our information pages on drugs for more information about your medication.
Self-help and daily living
Drugs are important in controlling lupus, but there’s also a lot you can do yourself to help manage your symptoms. Having a healthy diet, exercising regularly and not smoking will help reduce your risk of developing the more serious complications of lupus.
Managing a flare-up
Lupus is a condition that naturally improves and worsens at different times. Learning how to manage a flare-up of your symptoms helps you to be more in control of your condition.
The reasons for a flare-up can vary from person to person, but exposure to sunlight, too little rest time, infections and stress can all play a part. It can be useful to try to spot the things that lead to a flare-up and find ways of managing or avoiding them.
Pregnancy and lupus
Most women with lupus should be able to have a baby if they wish to. It’s best to discuss your plans with your doctor before trying to get pregnant so your treatments can be altered if they need to be. 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.
If you can, it’s best to try for a baby when your lupus is not active.
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. There’s an increased risk of pregnancy complications in women whose lupus affects a number of different organs and who find it difficult to control their symptoms without certain medications.
There are also restrictions on drugs that you can take if you’re breastfeeding. Talk to your rheumatology team or GP.
If you have high levels of antiphospholipid antibodies there’s an increased risk of miscarriage. However, treatment with aspirin or heparin reduces this risk, and there are now many more successful pregnancies in women who have these antibodies.
There’s conflicting evidence about whether pregnancy is likely to cause a flare-up of lupus. If your condition is well controlled at the time you became pregnant, and you don’t have kidney disease, then you’re unlikely to have any problems.
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.
In pregnant women who have anti-Ro antibodies there’s a small risk that their babies will have neonatal (newborn) lupus syndrome. 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. Most babies born to mothers with anti-Ro antibodies will be fine, but it’s important to have regular scans of the baby’s heart during the pregnancy.
Research and new developments
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.
We’re currently funding research into many aspects of lupus, for example:
- A study, being carried out at University College London, is looking into the potential link between a lack of iron in the blood and fatigue in lupus patients. 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.
- Research is looking at why vascular disease often develops in people who have lupus. This could lead to the development of new drugs that could reduce the risk of heart attack of stroke in lupus patients.
- Research is helping us to understand how changes in a specific gene contribute to the risk of developing adult lupus, and which genetic factors lead to the development of lupus in children. This could help develop new treatments for children and adults.
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.
One day a hairdresser asked if I’d ever had brain surgery because of the dark discoloration to my scalp. I also had indents on my fingertips. I was in my mid-twenties and didn’t understand what was happening.
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’d go to work, come home, feel so tired, and need to sleep for a couple of hours. I’d then wake up, have a shower and go to bed for the night. I couldn’t do anything in the evenings.
I couldn’t sleep flat. I had pillows to prop me up. My GP sent me to A&E, and this led to a diagnosis of pleurisy – inflammation around the lungs.
After being in hospital for a week I was off work and recovering at home. I was coming to the end of 10 days on ibuprofen when one day my feet were so painful I couldn’t put any weight on them. I then started to develop joint pains everywhere.
The slightest movement was extremely painful and I was really struggling.
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.
I’ve always believed in the importance of good nutrition and exercise.
I wasn’t going to allow my condition to stop me exercising. It’s so important to keep your body mobile and fit. Exercise doesn’t just help physically, but also emotionally and psychologically.
With lupus, there can be confusion, frustration and resentment. But you have to try to understand, accept and even embrace what’s happening, before you can move forward.
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. It’s important to have a good relationship with your clinicians, but also to take responsibility for yourself.
I’m thankful that the management teams at my places of work have been understanding when issues of my lupus have arisen.
Generally, my lupus doesn’t stop me working or enjoying my hobbies.
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.