Ask the expert: learn more about Lupus

06 May 2021
Fiona sat in Jennylyn's kitchen looking at papers which are spread out on her table.

Lupus is an autoimmune condition which causes joint pain, skin rashes and fatigue. It can also cause a number of other symptoms including kidney, brain, heart and lung disease. It is important to remember that not everyone has all of these symptoms.

Although there’s no cure for lupus, it can normally be managed with a range of drug treatments depending upon symptoms.

To help raise awareness of lupus, we spoke to Chris Wincup, Clinical Research Fellow in Rheumatology at University College London, about the questions he’s frequently asked about lupus.

How is lupus diagnosed?

Lupus is often a difficult diagnosis to make! In the UK it has been reported that it can take on average 7 years between the first onset of symptoms and the diagnosis being made. This is mainly due to the fact that many symptoms can be quite difficult to put together in the early stages. A diagnosis of lupus is usually based on a combination of symptoms and positive blood markers of the disease.

Why does lupus cause fatigue?

We know that people often feel fatigued when their lupus is active. However, we also know that many will continue to feel exhausted even when their lupus is well controlled.

Previous studies have shown that 9 out of 10 people with lupus find fatigue to be the worst part of their illness.

Some medication (including high dose steroids and some painkillers) can also cause problems with sleep and tiredness. So, it’s important to make sure your medication is reviewed when considering fatigue.

What can people try to help with fatigue?

Regular exercise has been shown to help reduce fatigue levels. It’s recommended to start any new exercise regime gently and gradually increase the amount you do over time. Find out more about ways to get active.

It’s also important to develop good ‘sleep hygiene’. This means trying to go to bed at the same time and avoiding distractions before you go sleep. For example, not using your mobile or watching tv.

If you have lupus and you’re experiencing high levels of fatigue, you should discuss this with your doctor.

Can changes to your diet help to treat lupus symptoms?

There’s little evidence currently to suggest that specific diets can help ease lupus symptoms and flares.

However, there are several things to consider when thinking about the effects of lupus on other parts of the body. Particularly, the heart and blood vessels.

We recommend people try a ‘Mediterranean diet’, which is high in fruit and vegetables and low in saturated fats. Find out more about ways to eat well.

It’s also helpful to avoid highly processed food and excessive salt and sugar, as this can increase the risk of diabetes, high blood pressure and raised cholesterol.

Some people use dietary supplements and many of these are safe to take alongside lupus medication. You should speak with your healthcare team if you’re thinking of starting any new supplements.

Can children get lupus?

Lupus is extremely rare in young children. We do see lupus occurring more frequently in teenagers and young adults than in children.

There are subtle differences between lupus that develops in adolescence (juvenile-onset lupus) compared with adult-onset lupus.

Younger patients with lupus may also be at risk of slightly different types of lupus, in particular lupus affecting the blood and kidney disease when compared with older patients.

Our research

Lupus and young people

Researchers at the Centre for Adolescent Rheumatology Versus Arthritis are working with young people to better understand how lupus, arthritis and other inflammatory conditions develop in children and teenagers.

The centre aims to develop better treatments, improve clinical care and help young people to self-manage their condition.

Understanding the link between lupus and vascular disease

Research funded by Versus Arthritis is looking to understand how antibodies present in the blood of people with lupus can damage the vessel lining. A better understanding of how these antibodies act may lead to a new target for treatment of lupus-related vascular disease.

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