Basics for Better Living Continued

When You Hurt, Apply Heat
- Moist heat soothes painful joints much better than dry heat.
- Soaking in a hot tub, sauna, jacuzzi or taking a hot shower is useful.
- Ice or cold applications, are advisable only for acute strains or injuries during the first 36 hours after injury

General Conditioning Exercises
You can help prevent muscle atrophy, or wasting, and lower your risk for developing thin bones (osteoporosis) with these types of activities:

walking
swimming
low impact aerobics
bicycling

However, if your joints are swollen or you have fibromyalgia, be careful before doing a lot of weight lifting, rowing, high impact aerobics, or engaging in tennis, bowling or golf.
If exercise tires you easily, pace yourself with frequent rest periods.

Consult A Rehabilitation Specialist

Physical therapists assist patients with:
muscle strengthening programs
exercises
gait training.

Occupational therapists help to:
lower stresses to painful areas
evaluate workstations (especially those with a computer) to ensure proper body mechanics
recommend a variety of assistive devices.

Vocational rehabilitation counselors may train you for a job that:
involves less sun exposure
puts less emphasis on repetitive motions involving an inflamed hand or other parts of the body.

Basics for Better Living Continued

Systemic Lupus Erythematosus (SLE)

Seventy percent of people with lupus have systemic lupus. About half have organ-threatening disease:
heart
lung
kidney
liver
serious blood involvement
and half have non-organ threatening disease:
rash
fatigue
fever
aching, and/or pain on taking a deep breath
normal urinalysis, EKG, and chest x-ray.
Undifferentiated Connective Tissue Disease (UCTD)
Finally, many people with early lupus-like symptoms don't meet the ACR criteria but have an undifferentiated connective tissue disease process. Studies have shown that, while many of these people will develop SLE over time, others will develop rheumatoid arthritis, have mild persistent symptoms, or find that the process just disappears.

How Can You Help Yourself?

Physical Measures
Be Careful In The Sun
Two-thirds of the people with lupus have problems with ultraviolet A and B (UVA and UVB) radiation from the sun. If you are going to be outside for more than five minutes, use a sunscreen. Choose a sunscreen that has a sun protection factor (SPF) of at least 15
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
People with lupus should eat a nutritious, well-balanced diet.
There are some suggestions that fish, or specifically eicosopentanioc acid in fish oil, might have modest anti-inflammatory properties. The results of double-blind controlled studies showed that eating the equivalent of two fish meals a week clearly helps rheumatoid arthritis pain.
An amino acid, L-canavanine, is found in alfalfa sprouts and can activate the immune system and increase inflammation in lupus patients. Other foods in the legume family have only a fraction of the L-canavanine that sprouts do and are safe to eat. Lupus patients taking corticosteroids should limit their sugar and salt intake.

Basics for Better Living

Although there is no "cure" for lupus, you can make lifestyle adjustments that help fight the disease and give you an improved sense of well being. Many of these don't require spending money or seeing a health care provider. After all, we've known for years that the "head bone" is connected to the "lupus bone," and that stress and difficulty in coping are associated more with disease flares. In this pamphlet, we offer you ways to do things to help yourself.

Make Sure It's Really Lupus

Even though 10 million Americans have a positive antinuclear antibody (ANA), only one million have systemic lupus erythematosus (SLE). A recent survey found that only one-third of patients who had been told they have lupus actually fulfill the American College of Rheumatology (ACR) definition for the disorder.

Positive ANAs, fatigue, aching and other lupus-related symptoms can be found among individuals with:

thyroid disease,
cancer,
recent infections (especially viral),
fibromyalgia,
rheumatoid arthritis,
pregnancy, and
multiple sclerosis,
among other illnesses.

Has your diagnosis of lupus given by your primary care physician, been confirmed by a Board Certified Rheumatologist or other recognized lupus specialist? If your disease has been confirmed as being lupus, read on.

What Kind Of Lupus Do You Have?

Chronic cutaneous lupus erythematosus (CCLE)
CCLE is a skin disorder. The skin precautions discussed later in the brochure are important, but fewer than 20 percent of these patients will ever develop systemic lupus, and most generally feel well.
Drug-induced lupus erythematosus (DILE or DLE)
DILE can be brought on by more than 70 different prescription drugs, but symptoms disappears within days to months of the drug's discontinuation.
Mixed Connective Tissue Disease (MCTD)
Some patients fulfill criteria for systemic lupus, but also meet the definitions for rheumatoid arthritis, scleroderma, or polymyositis. They have mixed connective tissue disease if anti-RNP is present.

Zero in 50

Zero in 50. Thursday, November, 20, 2008 marked an unfortunate anniversary. It was 50 years ago the U.S. Food and Drug Administration (FDA) last approved a drug to specifically treat lupus.

Side effects of Prednisone

Prednisone is the single most important factor in improving the outlook for lupus patients. It is usually effective in bringing lupus under control and it saves lives. However, there is a price to be paid for this success. If we observe what happens to patients taking high doses of prednisone, there is no doubt this drug can cause a wide variety of side-effects.

Short-term Side-effects:

*Not everyone has the same side effects or same severity of side effects. The longer and the stronger the dosage the more likely sideffects will occur. Side effects are also reversable to a degree when a dosage is lowered or when an individual is taken of the medication.

Side-effects:

- Swelling of the face, often referred to as "moon face" or "chipmunk cheeks"; some patients feel
ugly and say that they do not recognize themselves in the mirror. Remember, these changes
are reversible.
- A hump on the upper part of the back; this hump is made of fat, not bone.
- Bloating or swelling of the abdomen.
- Weight gain; prednisone may cause a great increase in appetite. Weight gain can be controlled
by a low calorie diet, by exercise and by avoidance of salt. Avoid salty foods and do not add
any salt.
- Stomach problems; to ease the burning, try taking prednisone with food. This problem may
require anti-ulcer medication.
- Mood changes; sometimes the change is for the better. However, depression may be made
worse by prednisone.
- Insomnia; patients may have difficulty sleeping at nights.
- Shakiness; patients may have feelings of being "hyper: or that "things are running fast inside
my head".
- Weakness of the thigh muscles; patients may have difficulty in climbing stairs, getting out of
the bath or getting up from a chair or toilet seat.
- Interruption of the menstrual cycle; periods may stop altogether.
- Increased risk of infections; patients may have more infections including some caused by
germs that the body is normally resistant to.

Long-Term Side-effects:

- Easy bruising of the skin; bruising from prednisone use often happens without any obvious
injury and may require that blood clotting ability be checked by the physician. When
prednisone is the cause of the bruising, blood clotting will be normal. This easy bruising
disappears when prednisone is stopped and is not associated with any risk of internal bleeding.
- Stretch marks; these may occur on the upper body, the arms, the abdomen and the thighs.
Some patients have this problem while others do not. Unfortunately, there is no treatment and
the marks are permanent.
-Excessive growth of body hair; this hair growth usually appears on the face and will stop when
prednisone is decreased. The hair that has grown will tend to stay but it can be effectively
removed by using a hair-removal cream.
- Cataracts; these are a cloudiness of the lens of the eyes that cause a decrease in vision.
Occasionally, surgery may be required.
- Osteonecrosis; this condition means "dead bone" and most frequently affects a bone in the hip
joint called the femur (other bones may be involved as well). Osteonecrosis is becoming a more
important cause of pain and disability in lupus patients. If this problem is found early,
worsening of the process may be prevented by performing a surgical procedure. In many
patients, the damage caused by osteonecrosis eventually comes to a stop. In some patients,
where damage to the bone has been severe, an artificial joint may be needed.
- Osteoporosis; this results from a loss of calcium from the bones and often leads to fractures,
particularly in the spine. These may be a major cause of pain and disability. However, this
process is at least partly reversible if prednisone can be stopped. If prednisone must be
continued, this side effect may be decreased by exercise, by eating foods rich in calcium and by
taking extra calcium and vitamin D as prescribed by your physician. These preventive
measures should be started as soon as a high prednisone dose is begun.
- Heart attacks; several factors (including smoking, high blood pressure and high blood sugar)
combined with long term prednisone treatment may lead to a narrowing of the blood vessels of
the heart and early heart attacks. This risk can be decreased by maintaining a reasonable
weight, controlling blood pressure and, most importantly, not smoking.

Symptoms which may Indicate a Lupus Flare

It is important to note that this list of symptoms applies only to patients with a diagnosis of systemic lupus erythematosus. In addition, remember that lupus is often a disease that repeats itself. Be on the lookout for a return of symptoms that were experienced at the beginning or onset of your disease


- Persistent (continuing) fatigue which is out of proportion to what you consider your normal
- fatigue
- Persistent weakness
- Aching all over without any obvious reason
- Persistent fever (In order to establish that you have fever, take your temperature every six
hours and write down the results.)
- Persistent loss of appetite
- Involuntary weight loss
- Excessive and persistent hair loss
- Recurrent (repeated) nose bleeds
- Sores on the roof of the mouth which burn when spicy foods are eaten
- Unexplained rash anywhere on the body
- Persistent hives
- Skin ulcers
- Recurrent pain in the joints
- Swelling of one or several joints
- Persistent joint stiffness upon wakening in the morning
- Chest pain which increases when breathing in
- Unusual shortness of breath
- Coughing up blood
-Persistent, unusual headache
- Persistent nausea and vomiting
- Recurrent or persistent pain in the abdomen
- Persistent and worsening swelling of the feet and legs
-Persistent swelling of the eyelids
- Blood in the urine or in the stools

Flare for Fashion

‘Flare’ for Fashion - Event and Ticket Information
Event Information
DATE : Wednesday October 15, 2008PLACE : Liberty GrandADDRESS : 25 British Columbia Rd., Exhibition Place

For the purchase of a table or more information please email events@lupusflarefoundation.ca or call 905.278.6286 for further details.