Experiences with
LupusCheck if you have lupus
There are lots of possible symptoms of lupus.
The main symptoms include:
- joint and muscle pain
- extreme tiredness that will not go away no matter how much you rest
- rashes that usually come on after being in the sun – the rash is often over the nose and cheeks
You might also have:
- headaches
- mouth ulcers
- a high temperature
- hair loss
- weight loss
- swollen glands, usually in the neck, armpits or groin
- depression and anxiety
- chest or tummy pain
- changes in the colour of your fingers and toes when you're cold, anxious or stressed (Raynaud's)
Symptom flare-ups
Lupus often flares up (relapses) and symptoms become worse for a few weeks, sometimes longer.
Symptoms then settle down (remission). The reason why symptoms flare up or settle down is not known.
Some people do not notice any difference and their symptoms are constant.
- you often get symptoms of lupus
Lupus is better managed if it's found and treated early.
Tests for lupus
Lupus is not always easy to diagnose because the symptoms can be similar to other conditions.
A GP will usually do some blood tests. They may diagnose lupus if the tests show you have high levels of a certain type of antibody, and you also have the typical symptoms of lupus.
You might be referred for X-rays and scans of your heart, kidneys and other organs if the doctor thinks they might be affected.
If lupus is confirmed, you'll be advised to have regular checks and tests, such as blood tests to check for anaemia and urine tests to check for kidney problems.
Treatment for lupus
Treatment you may have for lupus includes:
- anti-inflammatory medicines like ibuprofen
- hydroxychloroquine for fatigue and skin and joint problems
- steroid tablets, injections and creams for kidney inflammation and rashes
Immunosuppressant or biological medicines are sometimes used to treat severe lupus. They help to calm or control your body's immune system.
Things you can do if you have lupus
Although medicines are important in controlling lupus, you can help manage your symptoms and reduce the risk of it getting worse.
use high-factor (at least factor 50) sunscreen and wear a hat in the sun – you can get sunscreen on prescription if you have lupus
learn to pace yourself to avoid getting too tired
try to stay active, even on a bad day
try relaxation techniques to manage stress – stress can make symptoms worse
tell your employer about your condition – you might be able to adjust your working pattern
ask for help from family, friends and health professionals
eat a healthy, balanced diet, including vitamin D and calcium
do not smoke – smoking makes lupus worse so it's important to stop smoking
do not sit in direct sunlight or spend a lot of time in rooms with fluorescent lights
Causes of lupus
Lupus is an autoimmune condition. This means the body's natural defence system (immune system) attacks healthy parts of your body.
It's not contagious.
The causes of lupus are not fully understood. Possible causes include:
- viral infection
- certain medicines
- sunlight
- puberty
- childbirth
- menopause
More women than men get lupus, and it's more common in women with an African, Caribbean, Asian or Chinese background.
Lupus in pregnancy
Lupus can cause complications in pregnancy.
See a doctor before trying to get pregnant. They can discuss the risks and check if your medicine needs to be changed.
SymptomsMedical treatmentsSelf-careCausesSymptoms of lupus include joint and muscle pain, extreme tiredness, a rash on your face, headaches, mouth ulcers, a high temperature and hair loss.
There's currently no cure for lupus, but the symptoms can often be treated with medicines that reduce inflammation in your body, such as steroids.
If you have lupus, wear at least factor 50 sunscreen and a hat in the sun, pace yourself to avoid getting too tired and try to stay active every day.
Lupus is caused by your immune system mistakenly attacking healthy parts of your body. It's not fully understood why this happens.
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