Lupus

You should consider making an appointment with your GP if you get any of the following:

• Joint pain and stiffness
• Extreme tiredness that won’t go away no matter how much you rest
• Skin rashes – often appearing over the nose and cheeks

Alongside the three main symptoms shown above, you might also have:

• weight loss
• swollen glands
• sensitivity to light (causing rashes on uncovered skin)
• poor circulation in fingers and toes (Raynaud’s phenomenon)

As lupus symptoms can be similar to lots of other conditions, it can take some time to diagnose.

Your GP will usually do some blood tests. High levels of a certain type of antibody, combined with typical symptoms, indicate that lupus is the likely diagnosis.

You might be referred for X-rays and scans of your heart, kidney and other organs if your doctor thinks they might be affected.

Once lupus is diagnosed; you will be advised to have regular checks and tests – for example, regular blood tests to check for anaemia and urine tests to check for kidney problems, which can be a complication of lupus.

Symptoms have the tendency to flare up and settle down at different times. The disease may relapse (get worse) and symptoms can intensify for a few weeks, and sometimes longer. Symptoms can then go into remission (settle).

We do not yet know why these symptoms relapse and the remission process happens.

For some people, however, they do not notice a difference and symptoms stay constant.

Whilst lupus has no cure, the prognosis in children is generally very good with proper treatment.

Lupus symptoms in children can vary a great deal, so it can be a difficult condition to diagnose in young people. Some children have obvious lupus symptoms, such as a fever, rash, or kidney problems. Others may only complain of feeling unwell or being tired and achy. Some children can appear fine, but it is the unseen problems (results from blood or urine) that can lead to a lupus diagnosis.

You can find more support and information by visiting Lupus UK.

A new diagnosis of lupus may take some time to adjust to. The symptoms may affect you by giving you pain and making you tired, for example; this can impact your day to day life. Medication can also have an effect on you and your body, which can be difficult to manage. Many sufferers of lupus can live undisrupted lives and are fortunate to be able to manage their condition well, whilst others can be severely affected by the disease.

There are steps you can take to help you manage your lupus.

If you have been diagnosed with lupus, you will probably have been under the care of several different health professionals. A diagnosis is usually made by a rheumatologist, but other specialists may be involved; such as dermatologists, kidney specialists, cardiologists, or obstetricians if you are pregnant.

Ask your health professional for advice about managing your lupus. Take a list of questions with you to your appointment; they will be happy to advise you.

Lupus can cause complications in pregnancy. See your doctor before trying to get pregnant to discuss risks and so your medication can be changed if necessary.

Here is some advice on what you can do to help manage your lupus:

• become well-educated about lupus – it’s really the only option
• offset fatigue by rest and by pacing daily activities
• try to resolve stress, depression, pain, or anger
• avoid exposure to direct sunlight and fluorescent lights
• be open with family and friends on lupus unpredictability
• develop new interests and skills if wished and if able
• ask for help from family, friends, and health professionals

Depression can be a common manifestation in people with lupus. It is often difficult to determine whether the depression is an integral part of lupus, which it can be in some patients. Management of lupus itself often lifts the depression, whether the depression has arisen in response to having a chronic painful illness or whether it is an unrelated psychological condition.

For more information and support, you can check out Lupus UK’s leaflet on Lupus and Depression.

Healthy eating

We all know that the foods we eat can affect our general health. If you have lupus, healthy eating has the potential to make a difference to your lupus symptoms.

For a more in-depth look at healthy eating and lupus, you can look at the lupus and healthy eating guide, put together by Lupus UK.

Exercise

Exercise is important for your wellbeing. People with lupus need to exercise regularly or engage in some of movement. It is vital to remember that everyone is affected differently by lupus, so not everyone can do a wide range of exercise; however, most people with lupus can take part in some form of activity. It is also important to realise that the amount of activity you can manage is likely to fluctuate as your lupus does.

Lupus: An invisible monster | https://www.lupusuk.org.uk

Lupus UK | published on 24 October 2016

Living with lupus | https://www.lupusuk.org.uk

Lupus UK | published on 30 September 2014

Getting diagnosed | https://www.lupusuk.org.uk

Lupus UK | published on 9 May 2013

Exercising with lupus | https://www.lupusuk.org.uk

Lupus UK | published on 10 May 2015