Living with Lupus

July 11th, 2008 by Cindy Owen

Despite the symptoms of lupus and the potential side-effects of treatment, people with lupus can maintain a high quality of life overall. One key to managing lupus is to understand the disease and its impact. Learning to recognize the warning signs of a flare can help the patient take steps to ward it off or reduce its intensity.

Many people with lupus experience increased fatigue, pain, a rash, fever, abdominal discomfort, headache, or dizziness just before a flare. Developing strategies to prevent flares can also be helpful, such as learning to recognize your warning signals and maintaining good communication with your doctor.

It is also important for people with lupus to receive regular health care, instead of seeking help only when symptoms worsen. Results from a medical exam and laboratory work on a regular basis allows the doctor to note any changes and to identify and treat flares early. The treatment plan, which is tailored to the individual’s specific needs and circumstances, can be adjusted accordingly.

If new symptoms are identified early, treatments may be more effective. Other concerns also can be addressed at regular checkups. The doctor can provide guidance about such issues as the use of sunscreens, stress reduction, and the importance of structured exercise and rest, as well as birth control and family planning. Because people with lupus can be more susceptible to infections, the doctor may recommend yearly influenza vaccinations or pneumococcal vaccinations for some patients.

Women with lupus should receive regular preventive health care, such as gynecological and breast examinations. Men with lupus should have the prostate-specific antigen (PSA) test. Both men and women need to have their blood pressure and cholesterol checked on a regular basis. If a person is taking corticosteroids or antimalarial medications, an eye exam should be done at least yearly to screen for and treat eye problems.

Learning to recognize the warning signs of a flare can help the patient take steps to ward it off or reduce its intensity.

Staying healthy requires extra effort and care for people with lupus, so it becomes especially important to develop strategies for maintaining wellness. Wellness involves close attention to the body, mind, and spirit. One of the primary goals of wellness for people with lupus is coping with the stress of having a chronic disorder. Effective stress management varies from person to person. Some approaches that may help include exercise, relaxation techniques such as meditation, and setting priorities for spending time and energy.

Developing and maintaining a good support system is also important. A support system may include family, friends, medical professionals, community organizations, and support groups. Participating in a support group can provide emotional help, boost self-esteem and morale, and help develop or improve coping skills.

 

Signs and Symptoms of Lupus Flare

Be aware of one or more of these symptoms:

• Persistent fatigue out of proportion with what you would usually expect
• Persistent weakness
• Aching all over
• Fever, which may be slight to high (you can check your temperature yourself)
• Persistent loss of appetite
• Involuntary weight loss
• Increasing hair loss
• Recurring nose bleeds
• Sore on the roof of the mouth, which burns with spicy foods
• Unexplained skin rash anywhere on the body
• Hives
• Sores on the skin
• Painful joint(s)
• Swollen joint(s)
• Stiffness of the joints when waking up in the morning
• Chest pain which increases with breathing
• Shortness of breath
• Coughing up blood
• Persistent unusual headache
• Nausea or vomiting
• Recurring or persistent abdominal pain
• Persistent, increasing swelling of the feet and legs
• Puffy eyelids
• Blood in the urine

Lupus is often a self-repetitive disease: watch for a recurrence of the symptoms that you experienced when your disease started.

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. The information in this pamphlet applies to these patients, but they should also find out about the associated disorder.

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.

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.

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.

Genetic And Prognosis Counseling

• Women with lupus have a 10 percent chance of having a daughter with lupus.
• Women with lupus have a 2 percent chance of having a son with the disease.
• Women with lupus have a 50 percent chance that their children will have a positive ANA.
• 20 percent of patients with non organ-threatening systemic lupus will develop organ-threatening disease, usually within the first five years after diagnosis.
• Patients with non organ-threatening disease have a near normal life expectancy if antiphospholipid antibodies are not present.
• The rate of survival for people with organ-threatening lupus is 75 percent at 15 years, which means that after 15 years with lupus, 75 percent of patients are still living.

Pregnancy

• 70 percent of lupus pregnancies are successful.
• People with lupus are normally fertile but often don't conceive if there is inflammation.
• Kidney failure, severe hypertension, and myocarditis are strong reasons for not becoming pregnant.
• Women with antiphospholipid antibodies who have previously miscarried may be given aspirin or heparin during pregnancy.
• Mothers with anti-RO (SSA) antibody should be advised of a 5-15 percent risk of their child being born with a transient lupus rash or a more serious heart problem that can be detected with fetal ultrasounds at week 18 and 24.
• Find out what medicines are safe to take during pregnancy.
• Although most lupus activity decreases during the second trimester, mild post-delivery flares can occur.

Take Care Of Fevers Or Infections Promptly

• Call a doctor if your temperature is over 99.6°F. It could be a lupus flare or an infection.
• Up to 30 percent of people with lupus are allergic to sulfa drugs, so be careful before taking sulfa-based antibiotics. These drugs are usually prescribed for bladder and female-related infections. They tend to make people with lupus more sun-sensitive and can lower blood counts.

Cognitive Dysfunction, Cognitive Impairment, Or "Lupus Fog"

Some people with lupus will have difficulty remembering names and dates, balancing their checkbook, and processing thoughts. This is a reflection of vascular spasm which can reduce the amount of oxygen getting to the brain. These symptoms come and go. Cognitive therapy, which can help with these symptoms, may involve psychologists, speech therapists, and physical therapists who can help patients cope with this by initiating biofeedback and specific strategies to improve concentration.

Discuss Alternative Therapies With Your Lupus Specialist

• Biofeedback, relaxation techniques, and meditation are usually helpful.
• Certain herbs, vitamins, special diets, forms of massage, and chiropractic or osteopathic manipulation may help, harm, or have no effect on the disease.
• Note: There is no place for colonics in people with lupus, as bowel perforations have occurred.
• It is wise to consult with your lupus specialist before spending a lot of time, money, and energy on unproven alternative medical approaches.

Don't Be Afraid To Ask For Help

• The Lupus Foundation of America (LFA) offers information about lupus books, patient information brochures, and newsletters.
• Most local LFA chapters have support or discussion groups, sponsor guest speakers, and maintain a list of health professionals who can assist you.