Managing Life With Lupus

Lupus can target any of the body’s tissues, and can often be difficult to identify or diagnose, which is why it is called “the disease with a thousand faces”. For the vast majority of people going through life with lupus, effective treatment can reduce symptoms, reduce inflammation, and maintain normal bodily functions. It is therefore critical to understand and manage symptoms.

The Lupus Cycle

Lupus is different for each individual, but it often appears in cycles, which can consist of:

  • a ‘flare’, with severe acute symptoms needing medical attention;
  • a ‘chronic’ phase, when symptoms may continue but are less severe;
  • a ‘remission’, when symptoms may disappear completely for long periods but can return.

Recognizing a flare in its early stages can make treatment easier and more effective. A person with lupus needs to avoid situations that can trigger a flare such as getting too tired, intense stress, poor diet or other specific factors noticed by patient or doctor.

Although some people with lupus have severe recurrent attacks and are frequently hospitalized, most people with lupus rarely require hospitalization and there are many lupus patients who never have to be hospitalized, especially if they are careful and follow their physician’s instructions. Each person’s experience of diagnosis, treatment, and living with lupus will be very different.

Managing the Condition

Preventive measures can reduce the risk of flares. For photosensitive patients, avoidance of (excessive) sun exposure and/or the regular application of sunscreens will usually prevent rashes. Regular exercise helps prevent muscle weakness and fatigue. Immunization protects against specific infections. Support groups, counseling, talking to family members, friends, and physicians can help alleviate the effects of stress. Needless to say, negative habits are dangerous to people with lupus. These include smoking, excessive consumption of alcohol, too much or too little of prescribed medication, or postponing regular medical checkups.

Treatment approaches are based on the specific needs and symptoms of each person. Because the characteristics and course of lupus may vary significantly among people, it is important to emphasize that a thorough medical evaluation and ongoing medical supervision are essential to ensure proper diagnosis and treatment.

Medications are often prescribed for people with lupus, depending on which organ(s) are involved, and the severity of involvement. Effective patient-physician discussions regarding the selection of medication, its possible side effects, and any changes in doses are vital.

The Sun

Two-thirds of the people with lupus have problems with ultraviolet A and B (UVA and UVB) radiation from the sun. Sunscreen will be required if you are going to be outside for more than five minutes. Make sure you choose a sunscreen that has a sun protection factor (SPF) of at least 15 and make sure it blocks both UVA and UVB rays. UVB sun exposure is greatest at midday, so do your outdoor activities earlier in the morning, late in the afternoon, or in the evening and wear protective clothing. Ultraviolet radiation is also greater at higher altitudes. The UV exposure at sea level in one hour is the same as the exposure in five minutes at an altitude of one mile like in Denver, Mexico City, or on a ski slope.

Diet and Exercise

Managing your diet and exercising regularly should be part of your lifestyle and will give you back control over your body. A number of foods are inflammatory and must be avoided and some are anti-inflammatory.

Inflammatory foods are refined carbohydrates such as white flour and sugary products. Fried foods, soda, and other sweetened beverages, red meats and trans fatty acids are also inflammatory. Foods that are considered anti-inflammatory are ones that are found in the “Mediterranean diet” such as fish, vegetables, fruits, and nuts. Please see the link below to the Harvard Medical School study published by Harvard Health.

Exercise is always a good lifestyle habit and will depend on how well you feel and can vary from simple classic stretches, yoga routines and walking to rigorous ironman marathons. Regardless of your level of ability some time spent daily on exercise will get the blood moving, provide you with some energy and well-being.

Links to More Information:

Foods that Fight Inflammation

Nutrition and Lupus – Spiritual Health 

Sign the petition and MAKE A DIFFERENCE!

This Lupus Ontario petition is advocating to have the Ontario government approve all biologics approved by the Federal Health Agency (CADTH) added to the Ontario Drug Formulary under the Limited Use code rather that the Exceptional Access Program. The Limited Use code eliminates the administrative burden for rheumatologists and provides faster access for lupus patients. Please print and gather signatures and send it to our address: 285 Taunton Road East, Suite 4438, Oshawa, ON  L1G 3V2 Canada