Lupus Site - a guide for lupus patients and their families



Tips for Living with Lupus


Practical tips for living with lupus.

Sun & UV light

Many lupus patients experience problems after they have been exposed to sunlight, or UV light (from fluorescent lights, halogen lights, computer monitors).

Wear a high factor sunscreen (SPF 15+) whenever you are outside, even if it is cloudy-the UV rays penetrate the clouds. Lupus patients can get sunscreen on prescription (UK), just ask your doctor (Uvistat Ultrablock is one of the best). Wear long sleeved clothing & a hat when out in the sun, the most protective clothing is made from fabrics that have a close weave. If you have problems when using a monitor, buy a UV filter screen, & also wear sunscreen. Casings & filters can be bought to cover UV lighting.

Avoid the sun when it's at it's strongest - 10am-3pm.  Ultraviolet rays reflected from snow, water, sand, glass & cement are more intense.

Other tips

Find out what benefits you are entitled to, even if you're working you may be able to get something. Read the benefits article.

Avoid alcohol! Alcohol can interact with anti-inflammatory drugs & steroids to cause significant gastrointestinal problems such as peptic ulcer or gastritis. It can also interact with sedatives & narcotic painkillers to amplify their effects.

Don't smoke! Tobacco has negative effects on the cardiovascular system, lung & stomach. Lupus patients are particularly prone to vascular problems such as Raynaud's phenomena, which tobacco can greatly exacerbate. Medication induced stomach problems are also significantly worsened by tobacco use.

Avoid loneliness. Many people with lupus feel isolated & alone, due to the nature of the illness - they can't go out because of the pain & fatigue. Yet meeting other lupus sufferers can help immensely, just being able to talk to someone who knows what you are going through. Join your local lupus support group, you don't have to go to every meeting, & you may meet someone who lives nearby, who you can meet up with away from the group.

"My name is Pauline and I have been diagnosed with SLE for 13 years. After being plagued from the start with mouth ulcers and constantly having to use adcortly in orabase to control them I have recently discovered that taking 1000mg of L-Lysine and using a toothpaste that is Sodium Lauryl Sulphate free has cleared up my ulcers. I thought that I would send this email as I am sure that there are many people as fed up as I was of having to use this paste to treat these mouth ulcers."




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