It's well recognised that lupus is very unpredictable. Lupus is currently incurable and tends to swing between times when there are few or no symptoms (classed as remission) and times when lupus is very active (classed as flares).
The flares themselves can range from mild – perhaps a slight ache or mild rash to severe with an acute increase in symptoms and potentially patients organs could be damaged. They can snowball quickly out of control so if you experience severe or new symptoms you should seek medical advice.
As you can imagine it's difficult to plan a life when you're not sure when lupus will become active again and this can be a major frustration. Some patients have reported no activity for years, then suddenly lupus flares up again. Whilst fighting a flare patients can feel very depressed, scared and withdrawn often wanting to sleep a lot which isn't surprising.
Flares can range in severity and frequency. They occur suddenly and often unexpectedly. There's no real way to predict when a flare will occur or how long it will last, but there are things you can do to try to minimise the occurrence of flares.
When experiencing a flare the best piece of advice is to be kind to yourself, does it really matter if you don't do the hoovering today?
Other useful tips:
- Pace yourself, learn to say no, prioritise activities. keep a schedule and do the most strenuous tasks first, break big tasks into smaller tasks.
- Take care of yourself and try to reduce your risk of catching infections. Cleanliness such as washing your hands often (particularly after touching pets etc) and keeping kitchen surfaces clean will help. Also consider washing fruit and veg. Wherever possible avoid places where risk of infection is high, i.e. public transport, hospitals, schools (often not possible to avoid so washing hands etc is important).
- Take medication as prescribed (use a pillbox and phone alerts as reminders) and make a note on your phone or calendar to remember to refill prescriptions, many pharmacies will now send you text alerts when your prescription is ready for collection.
- Rest when you need to, try not to take too many naps as you won't sleep at night. Maintain a healthy body weight, eat well, do some exercise, find a relaxing hobby.
- Don't be afraid to ask for help, have assistance such as child minders on standby and ensure your workplace knows you have lupus in case of a severe flare.
- Stress is a common cause of a flare, it's difficult to avoid and difficult to control; the children are playing up, the car won't start, you're late for work, the boss is on your case, are all the sorts of things that can cause stress. There's also major life events such as moving house, divorce, bereavement, loss of job, the stress associated with these can also cause a flare.
- A lot of patients find that ultraviolet rays from the sun or even certain light bulbs trigger a flare, illness or viruses / surgery / accidents / pregnancy / certain prescription drugs and sensitivity to items such as skin cream/hair dye etc might also all trigger a flare.
- Don't smoke, giving up smoking is one of the best things you can do for yourself. Respiratory infections with lupus patients are common and smoking increases the risk along with the risk of hardening arteries and inflammation of the blood vessels supplying the lungs. Smoking causes damage including; increasing the risk of coronary heart disease, blood clots and elevating blood pressure (which can also worsen kidney disease). Studies also show that smoking interferes with the benefits of some lupus medications. It's never too late to stop smoking and there is plenty of advice and information available on how to do this.
Signs of flare may include:
- Increased exhaustion
- Increased pain
- Generally feeling unwell
- Mouth ulcers
- Persistent headaches
Keep a diary to track flares and their causes.
Over time you will recognise a flare is starting. Work out a treatment plan with your doctor and medications that keep lupus under control. If you can't cope during flare contact your doctor or the specialist nurse straight away and always tell your doctor if you have new symptoms occurring during a flare.