Basics for Better Living Continued

Don't Smoke!

-Tobacco smoke contains an aromatic amine, hydrazine, which can cause flares of cutaneous lupus.
-Smoking worsens the symptoms of Raynaud's phenomenon (fingers and/or toes turn blue or white when cold)
-Smoking impairs circulation to a greater extent in people with lupus than in otherwise healthy people.

Develop Preventive Coping Strategies

Don't Let The Weather "Psych You Out"
People with lupus are sensitive to changes in barometric pressure. If the weather goes from hot to cold or wet to dry, you might be a bit achier. This will pass. The best climate for lupus patients is one with the fewest changes in the barometer.

Control Fatigue
Fatigue in lupus is caused by inflammation, anemia (deficiency in the oxygen-carrying materials in the blood), and chemicals known as cytokines, among other sources. In order to help reduce your fatigue:

-Pace yourself with periods of activity alternating with periods of rest.
-Remember: Patients who stay in bed all day only become weaker.
-On the other hand, supermoms and dads who put in a 20-hour day without a break can cause their disease to flare.

Develop A Good Doctor-Patient Relationship
It's very important that your physician is accessible and will take the time to discuss disease management issues. For instance:

-Will your physician tell you if pregnancy is advisable or not, whether or not to take birth control pills, which antibiotics you need to be careful with?
-Will your physician write a jury duty letter or fill out a disability form if needed?

In return, it's vital that you, as the patient:

-prepare for and keep your appointments
-be honest with your physician
-take medication as prescribed
-respect their time.

It would also be helpful to plan ahead and decide what to do in case of an emergency.

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.

Flares and What Triggers Lupus

In the simplest of terms, a lupus flare is when a person's lupus has been quiet or in remission, and then it becomes active again, either with new symptoms or a recurrence of old ones.

So what triggers an attack of lupus in someone? Scientists have noted some common features in many lupus patients. In some, exposure to the sun causes the sudden development of a rash, and then possibly other symptoms. In others, an infection ... perhaps a cold or a more serious infection ... does not get better, and then complications arise. These complications may be the first signs of lupus.

In still other cases, a drug taken for some illness produces the signaling symptoms. In some women, the first symptoms and signs develop during pregnancy. In others, they appear soon after delivery. Many people cannot remember or identify any specific factor. Obviously, many seemingly unrelated factors can trigger the onset of the disease.

Keeping a Flare at Bay

- Always take your medication as prescribed.
- Keep your doctor's appointments, even if you're feeling well.
- Avoid taking sulfa drugs (sulfonomides) that are used to treat infections such as bronchitis and urinary tract infections.
- Limit your exposure to sunlight; apply sunscreen before going outside during the day, and - ---- wear sun-protective clothing and a wide-brimmed hat.
- Reduce your risk of infections.
- Get plenty of rest.
Do not smoke.

The Definition of Lupus

"Lupus is an autoimmune disease that can affect various parts of the body, including the skin, joints, heart, lungs, blood, kidneys and brain. Normally the body's immune system makes proteins called antibodies, to protect the body against viruses, bacteria, and other foreign materials. These foreign materials are called antigens.

In an autoimmune disorder like lupus, the immune system cannot tell the difference between foreign substances and its own cells and tissues. The immune system then makes antibodies directed against itself. These antibodies -- called "auto-antibodies" (auto means 'self') -- cause inflammation, pain and damage in various parts of the body."

The Disease with a Thousand Faces

Systemic Lupus Erythmatosus (SLE or Lupus), is a chronic disease with a variety of symptoms caused by inflammation in one or more parts of the body. It belongs to the family of diseases that includes rheumatoid arthritis, scleroderma and other conditions. SLE can target any of the body's tissues, and it manifests itself in many ways. Because everyone's Lupus experience is different, it is often referred to as the disease of a thousand faces.

How common is lupus?

• It affects 15,000 (1 in 2,000) Canadians.
  
• Women develop lupus up to 10 times more often than men.
  
• It usually occurs in women between the ages of 15 and 45.

Lupus can affect men, women, and children of any age, but it occurs most often in women of childbearing age (ages 15 to 45). Systemic lupus erythematosus (SLE) is eight to 10 times more common in women than men.

• The Lupus Foundation of America estimates that approximately 1.5-million Americans have a form of lupus.

• Although lupus can strike men and women of all ages, 90% of individuals diagnosed with the disease are women, and 80% of those afflicted with systemic lupus develop it between the ages of 15 and 45.

• While lupus is a widespread disease, awareness of the disease lags behind many other illnesses.

• A survey of Lupus Foundation of America members suggests that more than half of those afflicted with lupus suffered at least four years, and saw three or more doctors before obtaining a correct diagnosis of lupus.

This is why I am doing this blog; this disease needs way more attention than it is getting right now. More people must be educated about what Lupus is and its affect on people.