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active  Topic # 69
  Lupus

05/10/2016 @ 0:07 PM
by NHS_UK

Anonymous

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Lupus is a complex and poorly understood condition that affects many parts of the body. The symptoms can range from mild to life-threatening.

The term "lupus" is most often used to describe a more severe form of the condition called systemic lupus erythematosus (SLE). These pages focus on SLE.

However, there are several other types of lupus that just affect the skin, including:

  • discoid lupus erythematosus
  • subacute cutaneous lupus erythematosus

Some medications can also cause lupus-like side effects, known as drug-induced lupus.

Symptoms of lupus

SLE can cause a wide range of symptoms, depending on the areas of the body affected. The most common symptoms are:

  • rashes – particularly on the face, wrists and hands
  • fatigue (extreme tiredness)
  • joint pain and swelling

Many people have long periods with few or no symptoms before experiencing a sudden flare-up, where their symptoms are particularly severe.

Even mild cases can be distressing and have a considerable impact on a person's quality of life.

Symptoms of systemic lupus erythematosus (SLE) can vary widely from person to person. Some people may only experience a few mild symptoms, whereas others may be more severely affected.

Even if you usually have mild symptoms, SLE can "flare up", with symptoms becoming more severe or new symptoms developing.

The three main symptoms of SLE are:

  • fatigue (extreme tiredness)
  • joint pain and swelling
  • rashes – particularly on the face, wrists and hands

Fatigue

Fatigue is one of the most common symptoms of SLE. You may feel very tired even though you get plenty of sleep. Carrying out everyday tasks, such as housework or office work, can leave you feeling exhausted.

Many people with SLE find that fatigue is the most distressing and disruptive aspect of the condition because it has a negative impact on their work and social life.

Joint pain

If you have SLE, you're likely to experience joint pain in your hands and feet. You may find the pain changes from one set of joints to another quite quickly, and is usually worse in the morning.

Unlike some other conditions that affect the joints, SLE is unlikely to cause your joints to become permanently damaged or deformed.

Rashes

Many people with SLE develop rashes on their skin – most commonly on the face, wrists and hands. A rash over the cheeks and the bridge of the nose is particularly common and is known as a "butterfly rash" or "malar rash".

Rashes caused by SLE may get better after a few days or weeks, but can last longer or even be permanent.

Rashes caused by SLE can sometimes be itchy or painful. They may get worse if they are exposed to sunlight.

Other symptoms

SLE can also cause a wide range of other symptoms. However, you're unlikely to have all of the symptoms listed below, and many people with the condition only experience the above main symptoms.

Other features of SLE may include:

When to seek medical advice

You should see your GP if you have persistent or troublesome symptoms that you think could be caused by SLE.

While it is likely that your symptoms are being caused by a more common condition, it's important to see a doctor for a diagnosis.

When to see your GP

See your GP if you have persistent or troublesome symptoms that could be caused by SLE.

Your GP will aim to determine the cause by asking about your symptoms and carrying out a number of blood tests.

Diagnosis

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 the symptoms can vary greatly from person to person and may change over time.

For example, there may be periods where your symptoms aren't very noticeable, or times when they flare up and become more severe.

For a confident diagnosis of SLE to be made, you'll need to have several symptoms of lupus and a number of blood tests may be carried out.

Blood tests

Some of the blood tests that may be carried out include:

  • an erythrocyte sedimentation rate (ESR) test – which can be used to determine whether there's any inflammation in your body
  • an anti-nuclear antibody test – which checks for a certain type of antibody in your blood, which most people with lupus have
  • an anti-DNA test – which also checks the level of a certain type of antibody in your blood; this level often increases during a flare-up
  • complement level test – which checks the level of a chemical in the blood that forms part of your immune system; this level often decreases during a flare-up

Other tests

Once you've been diagnosed with SLE, you'll normally need regular monitoring to see how the condition is affecting your body.

If you have SLE it's possible you may develop other conditions, such as kidney problems. Monitoring your condition allows your doctor to check for these complications and, if necessary, treat them as soon as possible.

You may need to have scans to check whether SLE is affecting your internal organs. These include:

Causes of lupus

SLE is an autoimmune condition, which means it's caused by problems with the immune system. For reasons not yet understood, the immune system in people with SLE starts to attack and inflame healthy cells, tissue and organs.

As with other more common autoimmune conditions, such as rheumatoid arthritis, it's thought a combination of genetic and environmental factors may be responsible for triggering SLE in certain people.

Most cases of SLE occur in women of childbearing age. The condition tends to be less common in white people of European origin and more common in those of African, Caribbean or Asian origin.

Systemic lupus erythematosus (SLE) is an autoimmune condition, which means it's caused by problems with the immune system.

The immune system is the body's natural defence against illness and infection. When the immune system detects the presence of an infectious agent, such as bacteria or a virus, it sends white blood cells and antibodies to attack it.

In cases of SLE, antibodies released by the immune system can attack healthy tissue, cells and organs.

It's not clear exactly why this happens, although most experts think SLE has more than one cause.

It's been suggested there may be a number of genetic factors that make people more susceptible to the condition, and that it also takes one or more environmental factors to trigger SLE in those who are susceptible.

Genetic factors

Brothers and sisters of people with SLE are much more likely to develop the condition than the population at large.

Researchers have identified a number of different genetic mutations that seem to make people more susceptible to developing SLE. A genetic mutation is a permanent alteration in the DNA sequence that makes up a gene. The DNA in a gene spells out specific instructions for making a protein, so when these instructions are altered, the body's processes do not work normally.

Most faulty genes are associated with regulating certain functions of the immune system, which may explain why the immune system in people with SLE starts to malfunction.

Environmental factors

A number of environmental factors may be responsible for triggering SLE in vulnerable individuals, although the evidence for many of these is limited.

Possible environmental factors that have been suggested include:

  • exposure to sunlight (ultraviolet light)
  • hormonal changes that occur during a woman's lifetime, such as during puberty or pregnancy
  • certain infections, such as by the Epstein-Barr virus (EBV) – a common viral infection that doesn't usually cause any symptoms
  • smoking

Treating lupus

There's currently no cure for SLE, but there are different medications that can help relieve many of the symptoms and reduce the chances of organ damage.

These medications include:

  • hydroxychloroquine – a medicine that has historically been used to treat malaria, but can also help treat some symptoms of SLE
  • corticosteroids – anti-inflammatory medications
  • immunosuppressants – a group of medicines that suppress your immune system

With good levels of support from friends, family and healthcare professionals, many people with SLE are able to manage their condition effectively.

There's currently no cure for systemic lupus erythematosus (SLE), but treatments can ease the symptoms and make it easier to live with.

In most cases, treatment involves a combination of lifestyle measures and medication.

Protecting yourself from the sun

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
  • sunglasses

You'll also need to apply sunscreen with a high SPF to prevent sunburn. However, some people with lupus aren't sun-sensitive and don't need to take extra precautions.

Read about sunscreen and sun safety

Vitamin D

As people get most of their vitamin D as a result of direct sunlight on the skin, there's 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)

Non-steroidal anti-inflammatory drugs (NSAIDs) are common painkillers that reduce inflammation in the body. If you experience joint or muscle pain as a result of SLE, you may be prescribed an NSAID to help ease your symptoms.

Commonly prescribed NSAIDs for SLE include:

You can buy some NSAIDs, such as ibuprofen, over the counter. These NSAIDs may be suitable if your joint or muscle pain is mild. For more severe pain, you'll 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. Your GP will advise about which NSAID is right for you.

Side effects

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

Hydroxychloroquine is a medicine that's 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'll 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 to:

  • control their symptoms
  • help prevent flare-ups
  • prevent the development of more serious problems from lupus

Side effects

Side effects of hydroxychloroquine are uncommon, but may include:

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.

If your GP or specialist feels it's necessary, you may need regular eye examinations.

Corticosteroids

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're 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.

Side effects

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:

  • thinning of your bones
  • thinning of your skin
  • weight gain
  • high blood pressure (hypertension)
  • high blood sugar

Corticosteroids are a safe and effective form of treatment, as long as they're taken correctly and under the supervision of your GP or specialist. They'll tailor the steroid dose to minimise side effects while effectively controlling the condition.

Immunosuppressants

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
  • cyclophosphamide

Immunosuppressants are sometimes used alongside corticosteroids 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.

Side effects

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:

  • loss of appetite
  • vomiting
  • diarrhoea
  • swollen gums
  • low blood count
  • bruising or bleeding more easily
  • headache
  • acne
  • extra hair growth
  • weight gain
  • liver damage
  • an increased risk of infection (see below)

Methotrexate, mycophenolate mofetil and cyclophosphamide can also cause birth defects if they're taken during pregnancy.

You should use a reliable form of contraception if you're taking these medications and are sexually active. If you're 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.

Infection risk

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's very important to report any symptoms of a possible infection to your GP immediately.

Symptoms of infection may sometimes be similar to a flare up of SLE and include:

You should also try to avoid contact with anyone known to have an infection – even if it's 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).

You should receive a seasonal flu jab and pneumococcal vaccinationon a regular basis.

Rituximab

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's since proved effective in treating a number of autoimmune conditions, such as SLE and rheumatoid arthritis.

Rituximab works by locking on to and killing immune system cells called "B-cells", which produce antibodies responsible for the symptoms of SLE. It's administered directly into your vein over the course of several hours, known as an infusion.

Your specialist may consider rituximab an appropriate treatment for you. If your doctor suggests using rituximab, they should tell you that there are currently some uncertainties about how effective it is in treating SLE.

Side effects

Common side effects of rituximab include:

  • flu-like symptoms, such as chills and a high temperature
  • dizziness
  • vomiting

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'll be closely monitored once your treatment begins.

Belimumab

Belimumab is a new medication given to people with active SLE who don't respond to other treatments.

It works by binding to growth factors that are needed for the survival of B-cells. It's given directly into your vein over several hours, known as an infusion. The first three doses are given 14 days apart, and the medication is usually given once a month thereafter.

Belimumab is licensed for treating SLE in the UK and there may be instances where your specialist may consider it an appropriate treatment for you. If your doctor suggests using belimumab, they should tell you that there are currently some uncertainties about how effective or safe it is in treating SLE.

Side effects

Common side effects of belimumab include:

  • flu-like symptoms, such as chills and a high temperature
  • nausea and diarrhoea
  • headache
  • difficulty sleeping (insomnia)
  • a cough, sore throat and blocked or runny nose
  • joint pain
  • increased risk of infections
  • changes in blood pressure

In rare cases, belimumab can cause a more serious allergy-like reaction. Most reactions occur during or shortly after the treatment is given, so you'll be closely monitored once your treatment begins.

Information about you

If you have SLE, your clinical team will pass information about you on to the National Congenital Anomaly and Rare Diseases Registration Service (NCARDRS).

This helps scientists look for better ways to prevent and treat this condition. You can opt out of the register at any time.

Find out more about the register.

Complications of lupus

The vast majority of people diagnosed with SLE will have a normal or near-normal life expectancy.

However, some people with SLE are at risk of life-threatening complications such as a heart attack or stroke as a result of damage to internal organs and tissues.

SLE, and some of the treatments for it, can also increase your risk of developing potentially serious infections.

If your symptoms of systemic lupus erythematosus (SLE) are mild or well-controlled, you may find it barely affects your day-to-day life and you don't have any complications.

However, for some people, SLE can be a more serious condition that can cause life-threatening complications. Some of these complications are outlined below.

Kidney problems

Around one in every three people with SLE develops a potentially serious kidney disease called lupus nephritis, caused by prolonged inflammation of the kidneys.

Lupus nephritis tends to develop relatively early in the course of SLE, usually within five years of diagnosis.

Symptoms of lupus nephritis can include:

Lupus nephritis can also cause high blood pressure (hypertension). If left untreated, it can put you at risk of developing life-threatening problems such as a heart attack or stroke.

In many cases, lupus nephritis doesn't cause any noticeable symptoms. However, this doesn't mean the condition isn't dangerous, as the kidneys could still be being damaged.

If you have SLE, it's likely you'll need to have regular blood tests so the condition of your kidneys can be carefully monitored. If you develop lupus nephritis, it can usually be successfully controlled using immunosuppressants.

In a small number of cases, the kidney damage can become severe enough to require treatment with dialysis (where a machine is used to replicate many of the kidneys' functions) or a kidney transplant.

Cardiovascular disease

Cardiovascular disease (CVD) is a general term for any type of health condition that affects the heart and arteries. It's often associated with blood clots and atherosclerosis (hardening and narrowing of the arteries).

Examples of CVD include:

People with SLE are more likely to develop CVD than the general population, because SLE can cause your heart and arteries to become inflamed and damaged.

If you have SLE, you can reduce your risk of CVD by making healthy lifestyle changes, such as:

  • stopping smoking if you smoke
  • eating a healthy, balanced diet low in saturated fat, sugar and salt, and containing at least five portions of fruit and vegetables a day
  • maintaining a healthy weight
  • exercising regularly – at least 150 minutes (two-and-a-half hours) a week of exercise strenuous enough to leave you slightly out of breath is recommended
  • cutting down on your alcohol consumption

Read more about preventing CVD.

Pregnancy complications

SLE doesn't usually affect fertility, but it can increase your risk of experiencing pregnancy complications, such as:

Some children of women with SLE can also be born with heart block (where electrical pulses that control the beating of the heart are disrupted) and rashes. This is known as neonatal lupus syndrome.

If you have SLE and are thinking of having a baby, it's best to plan this carefully with your doctors if possible.

The risk of complications is higher if you become pregnant during periods where your symptoms are particularly severe. You'll usually be advised to try to avoid getting pregnant until your symptoms are better controlled.

If you do become pregnant, you'll need to be monitored closely by your specialist and by an obstetrician, so they can check for any problems.

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