Lupus

Lupus is a chronic condition that can affect any system of your body, including your skin, kidneys, lungs, cardiovascular system and joints. There is no cure for lupus, but early diagnosis and proper treatment can help significantly improve symptoms.

Many people visit Circle Health Group hospitals for diagnosis and treatment of lupus every year.

Lupus is a non-contagious condition that typically affects more women than men. Anyone can develop lupus, but  approximately 90% of people living with lupus are women. Most people with lupus will develop it aged 15-44.

Lupus is an autoimmune disease, which means that the body’s immune system cannot distinguish between possible dangers to the body, and healthy tissue and organs. The result is a hyperactive immune system that causes inflammation and pain in any part of your body.

Lupus cases can range between mild and severe. In most cases, lupus is not life-threatening, but the disease can cause serious damage to organs such as your heart or kidneys that may be fatal if not treated properly.

When people talk about lupus, they are typically referring to systemic lupus erythematosus (SLE), the most severe form of lupus. SLE accounts for 70% of all cases.

However, there are four types of lupus:

• Systemic lupus erythematosus (SLE) can cause inflammation in multiple organs or systems of your body.
• Subacute cutaneous lupus erythematosus is a type of lupus that causes skin issues such as rashes or lesions that develop as a result of sun exposure. Discoid lupus erythematosus (DLE) is a type of cutaneous lupus that causes circular lesions, typically on the face and scalp. Rashes on the scalp can sometimes cause scarring and hair loss.
• Drug-induced lupus (DIL) is a condition with similar symptoms to SLE that is caused by certain prescription drugs. It is often temporary and goes away after you stop taking the medication.
• Neonatal lupus is a rare condition that only occurs in newborn infants whose birth parent passed on certain antibodies through the placenta. It causes skin rashes, low blood count and liver problems. Typically, these symptoms disappear on their own after six months, but in rare cases, the infant can have a congenital heart block that will eventually require a pacemaker.

Individuals with cutaneous lupus and neonatal lupus are at a slightly higher risk of developing SLE later in life.

Lupus affects each individual differently. During ‘flares’ or ‘flare-ups’, signs and symptoms can be present for weeks or sometimes longer. During periods of remission, symptoms may improve or disappear. However, some people with lupus experience symptoms consistently.

The most commonly experienced symptoms of lupus include:

• Fatigue – people with lupus are often exhausted by doing daily tasks even after proper sleep.
• Joint problems – lupus can cause joint pain and inflammation including arthritis, tendonitis, and carpal tunnel syndrome.
• Skin rashes – many people experience rashes on their skin, including the characteristic ‘malar rash’ on their cheeks and nose. This is called a butterfly rash because of its appearance. Often rashes can get worse if they are exposed to light (photosensitivity).

Other symptoms and signs of lupus

Lupus can have many different symptoms. For this reason, it has been called the ‘disease with 1000 faces’. Additional symptoms and signs of lupus may include:

• Fever
• Mouth ulcers
• Chest pain
• Shortness of breath
• Hair loss
• Headaches
• Stomach pain
• Swollen glands
• Fingers and toes that turn white, yellow or blue from cold or stress
• Dry eyes
• Seizures
• Anaemia
• Memory loss or confusion

Lupus affects each person differently, and the symptoms can mimic many other illnesses, which can make it very hard to accurately diagnose the condition.

Lupus can be difficult for your GP to diagnose. Because the symptoms are wide-ranging and mimic the symptoms of other, more common conditions, it’s not always initially clear that lupus is the cause. There is no one definitive test for lupus.

A combination of physical examinations, blood tests, urine tests and a thorough review of family history and symptoms can lead to a diagnosis. If you have lupus, getting a correct diagnosis can be frustrating. It can be helpful to keep track of your symptoms as they come and go and change over time.

Unfortunately, some GPs don’t always have as much knowledge of lupus as they could, so you should be persistent in following up on your diagnosis. As there is no one test that can determine lupus, you will likely have to exercise patience, as it can take time to rule out other conditions.

According to Dr Agustin Martin-Clavijo, Consultant Dermatologist at The Priory Hospital, “for a GP, both systemic lupus and other types of lupus can be very difficult to diagnose.”

“For a dermatologist,” he says, “chronic discoid lupus or even acute lupus is reasonably straightforward to diagnose because the condition tends to have fairly typical features. Once you learn to suspect it, there are some tests that you can do that can help you to make the diagnosis. So it's not difficult for a specialist, but certainly, it can be quite tricky for a GP.”

If you think you might have lupus, make an appointment with one of our specialists today. 

It is not known what causes lupus. Lupus is likely caused by a combination of genetic, hormonal and environmental factors.

Lupus risk factors

Although lupus can affect anyone, some groups are more at risk:

• Women are far more likely to be affected, with 9 out of 10 cases occurring in women
• Certain age groups – most people with lupus develop the condition between the age of 15–44
• Certain racial groups including individuals of African, Caribbean or Asian origin are more likely to have lupus than those of white European descent

Since women of childbearing age are more likely to get lupus, researchers believe there may be a link between the hormone oestrogen and lupus. However, this is not fully understood at this time. 

You are more likely to get lupus if a member of your family has lupus or another autoimmune disorder. 20% of people with lupus will have a parent or sibling who already has lupus or may develop lupus.

Lupus environmental factors

Although it’s impossible to pinpoint specific causes in most cases of lupus, there are several environmental factors that can play a role in triggering the condition in combination with certain genetic markers.

These triggers could include:

• Smoking
• Sun exposure
• Certain medications
• Infection after a virus or cold
• Exposure to stress

The danger of SLE is that the inflammation caused by the disease can cause damage to any number of your organs. SLE can affect the systems of the body in several ways.

• Kidneys – long-term inflammation can cause a serious condition called lupus nephritis
• Heart – cardiovascular disease is a leading cause of SLE-related deaths
• Lungs – common lung problems include inflammation of the lining of the lungs (pleuritis) and pneumonia
• Blood and blood vessels – lupus can cause various problems such as low red blood count (anaemia) and low white blood count (leukopenia). It can also cause vasculitis, which is inflammation of the blood vessels
• Brain and nervous system – if your brain is affected, you might experience headaches, dizziness, vision problems and even seizures or stroke. It’s also common for people with lupus to have memory loss or brain fog
• Bones – bone tissue death can occur as a result of low blood supply to the bones

Other complications include an increased risk of infection due to the disease itself and the medications used to treat it.

Kidney problems

Approximately one-third of people with SLE will develop lupus nephritis (inflammation of the kidneys). This potentially serious condition can lead to kidney failure if untreated.

Lupus nephritis does not always have symptoms at first. Once the kidneys become impaired, you might experience high blood pressure, swelling in your feet and lower legs (oedema), dizziness, foamy or bloody urine or elevated proteins in your urine. 

If you are diagnosed with lupus, your doctor will prescribe regular blood tests to monitor the condition of your kidneys.

Lupus and pregnancy

Women with lupus can have healthy pregnancies, but they are considered high-risk. Lupus can increase the risk of miscarriage, stillbirth, premature delivery and pre-eclampsia (a dangerous condition of high blood pressure).

Some medications taken for lupus are not suitable for pregnant or breastfeeding mothers, so it is always important to discuss pregnancy plans with your doctor or obstetrician.

The risk for complications is higher during flares or periods of poorly controlled lupus. For this reason, doctors recommend that women with lupus should have their condition under control for at least six months before getting pregnant. 

If you would like to learn more about pregnancy and lupus, make an appointment with an obstetrician today.

Lupus is a chronic condition with no cure. Treatment focuses on controlling symptoms, preventing flare-ups and limiting organ damage.

Your treatment will depend on the severity of your condition and the symptoms you experience.

There can be side effects to many of the drugs you might commonly be prescribed, so it’s important to weigh the pros and cons of any treatment.

Commonly used medications

Common medications for lupus might include:

• Anti-inflammatories – non-steroidal anti-inflammatory drugs (NSAIDs) are common over-the-counter painkillers like ibuprofen and naproxen. These help reduce mild swelling, joint pain and fever
• Antimalarials – hydroxychloroquine is a medication that is used to prevent malaria but can also be used to treat rashes, joint pain, fatigue and lung inflammation. It is typically prescribed for long-term use to prevent lupus flares
• Corticosteroids – steroids can help control inflammation, swelling and pain. They are highly effective in controlling inflammation in severe cases but should only be used when needed as there can be side effects
• Immunosuppressants – these medications are used in severe cases of SLE to help suppress the immune system. This prevents an overactive immune system from attacking healthy tissues and organs

In cases that do not respond to other medications, belimumab or rituximab might be prescribed. These drugs work by limiting the number of antibodies made by the body’s immune system. Common side effects can include flu-like symptoms, nausea, diarrhoea and dizziness.

Many of these medications are not suitable for pregnant or breastfeeding mothers, so it’s important to use effective contraception if you are taking these medications. If you want to become pregnant, you should first talk to your doctor.

Preventative care for lupus

You should see your doctor regularly to inform them of new symptoms, discuss any side effects of medication, and undergo regular preventative screening.

Effective lupus treatment involves preventative care to limit damage to the body’s internal systems. Depending on your specific risk levels, doctors might schedule routine kidney tests, cancer screenings and blood pressure tests.

In the course of your treatment, you will likely need to see various doctors and specialists. In addition to your GP, it’s common to see a rheumatologist, who specialises in diseases of the joints and muscles like lupus. You might also see nephrologists (kidney specialists), clinical immunologists, dermatologists, obstetricians, renal experts or cardiologists. 

A primary focus of lupus treatment is prevention and self-care. There are many things you can do as part of your daily routine to prevent flare-ups and improve your overall health and well-being.

Lifestyle changes for lupus care

If you have lupus, the following lifestyle changes can help keep you healthy and prevent flare-ups.

• Quit smoking – smoking increases your risk of cardiovascular disease. For people with lupus, it can worsen the effects on their heart and blood vessels.
• Maintain a healthy diet – because individuals with lupus are at a higher risk for cardiovascular disease, it’s critical to maintain a heart-healthy diet. Speak to your doctor about the most healthy diet for you and the possibility of taking supplements such as calcium and vitamin D for bone health.
• Get regular exercise – moderate exercise is beneficial for the heart, lungs, bones and joints. It’s also a good way to promote general well-being and combat depression.
• Take care in the sun – UV light can trigger flare-ups, so be careful when in the sun and avoid exposure to fluorescent lights. Be sure to use a good sun cream with UVA and UVB protection and wear a hat and protective clothing when you can’t avoid exposure to the sun.
• Consume less alcohol – alcohol may lower the effectiveness of some medications. Even moderate alcohol consumption can increase bodily inflammation and have negative impacts on your health.
• Manage fatigue – people with lupus often find that fatigue can interfere with their ability to work full time and live a normal life. Speak to your employer about working flexible hours or working from home if possible
• Avoid stress – stress can trigger a flare-up. Find ways of coping with stress that work for you to reduce your number of flare-ups.
• Get support – living with a chronic condition can be challenging and isolating. You can get emotional support by connecting with other people with lupus. Help educate your friends and family, so they can support you when you are unwell.

“There are two important things that you have to do to control your potential adverse reaction. The first is sun avoidance. It is very important. Although lupus is not caused by sun, lupus can be triggered by the sun. And total sun avoidance is very important, especially with chronic lupus. And the other thing that's even more important for some subtypes like SLE lupus is smoking. If you don't stop smoking, it is very difficult to control your lupus.”

– Dr Agustin Martin-Clavijo, Consultant Dermatologist, The Priory Hospital

Lupus and depression

It is very common for people living with chronic health conditions to experience depression. Chronic pain, stress and uncertainty can contribute to feelings of hopelessness.

Stress, anxiety and depression can all make your lupus symptoms worse or trigger a flare-up.

If you think you are suffering from depression, it’s important to seek help from a mental health professional. Therapy, antidepressants, exercise and a good support system are all methods of coping with depression.

If you would like to speak to a mental health professional, get in touch today.

Alternative therapies

Many individuals with lupus turn to alternative therapies to help treat their condition. This could include herbal supplements, fish oil pills or acupuncture. You should always talk to your doctor before starting any new therapy.

Dr Martin-Clavijo says that “the main problem is a lot of the ‘organic’ or Chinese remedies that they sell you say they are a very natural remedy, but they are full of steroids. So you have to be very careful of what you buy and where you buy it.”

Although anecdotally people with lupus report that acupuncture is helpful with joint pain, there has not been extensive research done on alternative therapies and their effectiveness on lupus. Some herbal medicines might not be safe to take with your prescribed medication, and some supplements might even worsen your symptoms.

You should always discuss any treatment with your doctor before starting. 

The symptoms of lupus are wide-ranging and differ from person to person.

Getting a proper diagnosis can be challenging because lupus mimics many other diseases. You might need to see several specialists and undergo several tests before getting a diagnosis. The sooner you get a diagnosis, the sooner you can find a treatment plan that works for you. 

If you have lupus, you will need to be an advocate for your own health. It can help to keep a detailed account of your symptoms to see how your medications and lifestyle affect your symptoms. You’ll need to be proactive about seeing your doctor, undergoing regular screening to check for organ damage, and living a healthy and balanced lifestyle.

Living with a chronic condition is challenging. The good news is that with proper self-care and medical treatment, you can minimise your symptoms and maximise your ability to live your life to the fullest.

Speak with one of our experts today about how we can help you manage your lupus better.

When you choose to go private with Circle Health Group, you can expect:   

• Flexible appointment times to fit your schedule
• The freedom to choose your hospital and your consultant
• Bespoke, consultant-led treatment plans tailored to your individual needs  
• Private en-suite rooms as standard 
• Tasty and nutritious meals cooked onsite to your dietary requirements
• Support from the same compassionate clinical team from beginning to end  
• Affordable, fixed-price packages with aftercare included  
• Flexible payment options to help spread the cost of your care

If you want to know more about treatment for lupus, book your appointment online today or call a member of our team directly on 0141 300 5009.

Content reviewed by Prof Hector Chinoy in August 2022. Next review due August 2025.