Lupus : The Disease with a Thousand Faces

Why Sleep is Critical When you Have Lupus

2010-07-26T09:40:00.002-04:00

I just read an article in the recent Lupus Now Magazine entitled "Sleep Easy: Why Sleep is Critical When You Have Lupus" by Jenny Thorn Palter. The article discusses how people with a chronic illness such as Lupus, chronic pain, and strong medications are more likely to be affected by sleep deprivation and how this can cause a Lupus Flare. The article provides tips to have a good night sleep which I will outline here, for further details please click the link to the article.

Set a sleep schedule
Exercise during the day
Avoid stimulants before bed
Do a relaxing activity before bed
Rise with the sun
If you can't sleep don't stay in bed awake, do a relaxing activity
Control room temperature and make the room comfortable
If the problem persists see your doctor

Lupus in Children

2010-07-12T09:48:00.002-04:00

My mom recently got a Lupus Foundation of America e-newsletter that talked aboout an article in People Magazine about Snoop Dogg's daughter, Cori, having Lupus. Naturally, whenever we hear about an article regarding Lupus we immediately go on the hunt for the magazine. For those who are interested the article is in the July 19, 2010 issue of People Magazine. After reading the article, I thought it would be good to provide further information on Lupus and Children. I found an article on the Lupus Foundation of America Site entitled "For Parents of Children Living with Lupus". This article covers a lot of information from diagnosis and medication to responsibility and behaviour. If you have a child Living with Lupus I would suggest reading it to get some interesting information.

Bad Flare Day on Everydayhealth.com

2010-05-11T11:22:00.002-04:00

Hi everyone, I was asked to start writing a Lupus blog for Everyday Health. My new Lupus blog is Bad Flare day and it is a weekly blog. I will still be posting to this blog but if you would like to read my posts from Bad Flare Day just follow the title.

John Lennon's son and friend write new song for Lupus

2010-01-31T14:17:00.003-05:00

Both Julian Lennon and James Scott Cook have a personal connection to Lupus. Jame's 92 year old grandmother, Lucy cook, has been living with lupus for a number of years and Julian's friend, Lucy Vodden, recently passed away at the age of 46 after a long battle with Lupus. John Lennon's song "Lucy in the sky with diamonds" was written for July Vodden when she was just a young girl. Now, so many years later his son and James Scott Cook have written a new song called "Lucy". To purchase this song and donate go to the Lupus Foundation of America site.

Ottawa Sun Article: Michael Jackson and Lupus

2009-07-22T13:28:00.002-04:00

Man in the mirror
Michael Jackson put human face on autoimmune disease lupus
By MARILYN LINTON

"When we heard that the Man In The Mirror had the "disease with a thousand faces," many of us were in the dark about the condition that Michael Jackson had been diagnosed with in 1986.
In a recent CNN interview, Jackson's dermatologist, Dr. Arnie Klein, said that he knew when the pop star first walked into his office that he had lupus erythematosus.

One way the autoimmune disease broadcasts itself is by a classic butterfly rash that spreads across the upper cheeks and bridge of the nose. (In 1851, a French dermatologist described the rash as wolf-like, hence the name lupus.)

Jackson, said the Beverley Hills celebrity doc, had the butterfly rash on his face.
Given that there are approximately 50,000 Canadians living with lupus, it's not unusual to know or hear of someone with the disease, says Catherine Madden, executive director of Lupus Canada.

Raising awareness and educating people about the disease are among the organization's goals. Lupus is complex and called "the disease with a thousand faces" because each person's experience of being diagnosed, treated and living with lupus will be very different.

It can attack the skin, the joints, muscles, lungs, hearts, kidneys, brain or neurological system.

According to www.lupuscanada.org the disease (it affects women between the ages of 15 and 45 eight times more than men) is a chronic one whose symptoms can include extreme fatigue, joint pain, mouth ulcers, chest pain and hair loss. Klein confirmed that Jackson was virtually bald at the top front of his head.

Lupus sufferers are also prone to be super-sensitive under the sun, which is why Jackson was always under an umbrella when there wasn't a cloud in the sky.

In lupus, the immune system is unable to tell the difference between intruders and the body's own tissues. Trying to do its job, it attacks parts of the body, causing inflammation and creating the various symptoms -- some of them so debilitating that patients require hospitalization.
Lupus attacks are called "flare-ups" and in their most threatening form, they can seriously damage the kidneys and other organs.

The goal in treatment is to reduce inflammation and alleviate symptoms. To do this there's a whole arsenal of drugs available from mild anti-inflammatory meds to potent steroids.
Serious flare-ups are often followed by a chronic phase with less severe symptoms and, possibly, remission. Preventive measures help to reduce the risk of flare-ups, so patients need to pace themselves, control stress, eat well, exercise regularly, and promptly recognize and treat potential flare-ups.

It's because the disease takes so many forms that it's also difficult to diagnose. It's not unusual, says Madden, for people to take four to five years before finally getting a diagnosis (usually from a rheumatologist). Confirmation for lupus requires many things, including meeting several symptom criteria and a positive antinuclear antibody (ANA) blood test.

"Awareness and research in lupus is underfunded," Madden says of the "orphan" disease for which there is no cure. "One of Lupus Canada's goals is to get Canadians diagnosed sooner so that there's less damage to their bodies and they can learn how to live well with their lupus."
---
Symptoms
In general, lupus signs and symptoms may include:
- Butterfly-shaped rash (malar rash) on the face that covers the cheeks and bridge of the nose
- Fatigue
- Fever
- Weight loss or gain
- Joint pain, stiffness and swelling
- Skin lesions that appear or worsen with sun exposure
- Fingers and toes that turn white or blue when exposed to cold or during stressful periods (Raynaud's phenomenon)
- Mouth sores
- Hair loss (alopecia)
- Shortness of breath
- Chest pain
- Dry eyes
- Easy bruising
- Anxiety
- Depression
- Memory loss
Source: Mayo Clinic
---
The Thousand Faces of Lupus
There are several celebrities diagnosed with, or rumored to have, lupus. They include former Philippine president Ferdinand Marcos, musician Seal, Hollywood St. Elmo's Fire producer Lauren Shuler Donner, Savannah fiction writer Flannery O'Connor (who died from its complications), Trick Daddy and Anna Nicole Smith. "

Sun Protection

2009-07-13T14:43:00.005-04:00

People with Lupus must be careful in the sun all year round but especially in the summer months. It is imperative that people with Lupus take every precaution to protect themselves.

The American Lupus Foundation has compiled a great list of resources:

- Participate in a Lupus and your skin webchat

-Learn more about your skin and Lupus

-Read archived articles on Lupus and suncare from past Lupus Now issues

-Join message boards on the topic of Lupus and sun care

- Ask the experts on your skin and Lupus

Click on the picture to go to these resources.

Patient Voices: Lupus MUST READ

2009-07-13T14:31:00.003-04:00

The New York Times has a really great article about a diverse group of patients all with Lupus that has the actual people tell their story. There is a 16 year old girl, a man (whom are strongly misrepresented when talking about Lupus), and there are different ethnicities all with compelling stories.

Click the link in the following article from the American Lupus Foundation to go to the site.

The New York Times website Patient Voices Series Features People Affected by Lupus
July 9, 2009

"As part of its Patient Voices series, The New York Times website is featuring the stories of people from across the country who are affected by lupus. Using audio interviews and photos, Patient Voices seeks to give a glimpse into the life of someone living with lupus. The individuals featured are as diverse as the disease itself, and include actress/model and Lupus Foundation of America (LFA) national spokesperson Tomiko Fraser Hines, who lost her sister to lupus, and Jeremy Margolis, who recently suffered a heart attack resulting from lupus complications.The LFA would like to thank the participants for having the courage to share their stories, and believes they will not only help raise awareness of lupus, but will educate the public about a disease that is often misunderstood and under recognized . The LFA would also like to extend its gratitude to The New York Times for helping to increase awareness of lupus, an unpredictable and potentially fatal disease that affects an estimated 1.5 million Americans and at least five million people worldwide."

Visit The New York Times website and listen to the interviews and view the pictures.

Stories of Living Well with Lupus

2009-07-13T14:08:00.002-04:00

The Lupus Canada website has a series of personal stories on living well with Lupus. I hope this inspires you all to live your best life even with Lupus. Life is short and you have to take care of yourself first. I'm posting Maureen's story from the Lupus Canada website because I think it sheds a positive light on living with Lupus.

Maureen’s story

Living with a chronic illness – SLE – has proven to be both one of the hardest things in life to deal with. I have, however, grown as a person because of it Growing up, I didn’t get the typical colds or flu that most kids get; instead I was sick with things like mono and Bell’s palsy. I suffered migraines, terrible joint and muscle pain and would sleep for days on end. I just could not stay awake. Like many other youngsters, going to doctor after doctor, everything was related to growing pains, and as I got older, the growing pains turned to stress. No one considered that maybe, just maybe, I was sick.

My doctor finally gave in and sent me for tests. I am not sure if he did this because he thought there may actually be a possibility I was sick; if he wanted to shut me up or if he wanted to scare me by running so many tests. It turned out that the doctor got 2 out of 3 right. After many tests; x-rays, MRI’s, CT scans, blood test after blood test, sleep studies, biopsies and anything else you can think of I was both scared out of my mind – and sick.

After the many tests, I received a call from my doctor asking me to come to the office to discuss the results of my tests. I went to my appointment and at the age of 25 I was told I had “lupus”. Sadly, it became clear very quickly that my doctor at the time had little knowledge of lupus. Sitting in his office, the doctor looked down at my file and made no eye contact with me at all. His diagnosis went something like this – “You have lupus, which is strange because normally women in their 70’s and 80’s get lupus. Take these medications and a specialist will call you to make an appointment”. With that, he handed me a couple of prescriptions and walked out. I sat in the office for a few minutes waiting for him to come back and tell me what “lupus” was. Well, the doctor never came back and I did one of the worst things someone can do once being diagnosed with something. I looked on the internet! All of the research that I found said that I had about 5 years to live. Well, that was almost 4 years ago and I am not going anywhere any time soon.
In the past few years I have been through a lot. I have been diagnosed with a variety of things that all interrelate to SLE in one way or another. I have Sjogren’s, Raynauds, lupus nephritis (kidney involvement), vasculitis (CNS involvement), APS (sticky blood) and have had bouts of paracarditis and pleurisy. I live in pain and fear of the unknown. It has been a never ending learning curve, but despite the pain and things that all go along with lupus I have learned a few very important things:
- I am the most important person in my life – I need to take care of myself before I take care of everyone else around me. I am still working on this but I have improved.
- Listen to my body – if it says rest, I rest. If it says go to the doctor, I go to the doctor. If it says check my INR, I check my INR.
-I have a great support system. I have learned who my true friends are; and that those that I thought were true friends couldn’t handle me being sick.
- I have learned that lupus is not going to control my life. Lupus still has a say in how my day goes, when I need to eat, when I sleep and when I take my meds. It has let me know that I can’t sit in the sun – but if I cover up, I can spend time playing with the kids and that there are lots of fun inside things to do and lots of puddles to jump in on overcast days!

One of the most important things I have learned is that life is short – and to enjoy it. I don’t take things for granted anymore as I never know when things will change. In the mean time – as long as I remember the things that I have learned the past 4 years – I spend more time controlling lupus then it controls me. I live one day at a time, and I try to live each day as it might be the last.

May Lupus Awareness Month !

2009-05-07T16:35:00.002-04:00

Click Lupus Awareness to take you to the article about the Lupus Awareness Ad Council PSA that is being displayed in Rockefeller Centre until May 31.

2009-04-20T09:48:00.004-04:00

The Arthritis Society of Ontario lists Lupus as a type of Arthritis it provides the following information on Lupus:

AdvoKit Canada

2009-04-20T09:42:00.002-04:00

AdvoKit is a Support Resource provided on the Lupus Canada Website. It outlines support and services that people living with Lupus need, shows how they can advocate for them selves or how others can advocate on their behalf, Outlines how they can take charge of their lives and their health, and teaches them about their rights and entitlements.

Help Support Life Without Lupus

2009-04-20T09:35:00.000-04:00

Lupus NY You Tube Page

2009-04-20T09:26:00.000-04:00

Could I have Lupus? Real Women. Real Stories. Real Hope

2009-04-20T09:03:00.002-04:00

Please Click on this link to take you to this great website by the U.S Department of Health and Human Services. You can get great facts on Lupus, participate in discussion forums, read women's Lupus diaries and Create your own to share your story.

Basics for Better Living Continued

2009-02-17T10:25:00.002-05:00

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

2009-01-26T16:16:00.003-05:00

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

2009-01-26T16:08:00.002-05:00

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

2009-01-26T16:03:00.002-05:00

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

2009-01-15T13:55:00.003-05:00

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

2008-12-27T10:02:00.004-05:00

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

2008-12-27T09:53:00.002-05:00

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

2008-09-07T11:01:00.002-04:00

‘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.

Coping with Lupus

2008-09-07T10:41:00.003-04:00

Lupus patients must learn to control their lupus, rather than be controlled or "invaded" by it. I believe that lupus patients can learn to fight back and join with their physician to gain control over their illness.

The twin burdens of lupus
The burden of having to live with lupus is two-fold; on the one hand, there is the physical burden of the illness and its potential seriousness and, on the other hand, there is the intense fear that so often accompanies the illness, even in patients who are doing quite well. Through education, the patient with lupus can learn to fight back on both fronts.

Coping with the illness
Learning to live with lupus is like anything else in life; like becoming a parent, starting a new job, making an investment or buying a car. One has to learn how to do it and this learning does not happen overnight. Life is made up of pleasures and of obligations. Clearly, lupus can be quite an obligation but, depending on the person, the burden of this obligation may be lighter or heavier.
One key to coping with the illness is to get organized. Managing the day to day aspects of your lupus will help you to be in better control. Below is a list of some practical tips that will help you take care of your lupus responsibilities.

- See your doctor regularly and do not postpone your visit because you "feel so well". Make a list of all your questions and bring it to your next appointment.

-Make a list of all your pills or medications to each appointment. This helps your doctor identify "that little yellow pill" that was prescribed by "that other physician". Knowing all your medications, your doctor may be able to cut down on the number you are taking, which is nice and saves money too.

-Buy a multi-compartment pill box in any pharmacy so that you can lay out your pills for each day or week. This makes it easy to check if you have forgotten to take your medications.

-If your doctor orders a urine collection over 24 hours, collect your urine from Sunday to Monday morning and bring it into the hospital on your way to work. Carrying around a jug of urine may be embarassing but do your best not to lose a drop. Important decisions about the management of your disease will be made, in part, based on the results of this collection. (Urine collection should not be done during menstruation.)

-If your blood pressure is checked by your family doctor, the nurse at work or by yourself, don't forget to bring these readings to your next appointment. (Readings done at the Lupus Clinic are often higher and this can cause unnecessary concern.)

-Purchase a thermometer. If you feel that you are running a fever, take your temperature every six hours and wrrite down the results. If the problem continues and is not explained by a cold or the flu, call your physician.

-Be prepared for blood tests to be taken regularly, even when everything seems fine. SLE is unpredictable and the sooner a flare is detected, the better.

The physical burden of lupus
Over the past several years, there has been an extraordinary change in the concept or thinking about lupus. Lupus is no longer seen as a disease of crises but as a chronic illness. Many years ago, when the treatments for lupus were so limited and the death rate so high, lupus was a disease of catastrophes or crises. Patients would often go from one major physical problem to another, losing more and more ground with each flare. The physician's main concern was to get the patient out of crisis, if at all possible. What happened to the patient in-between was thought to be much less important.

With the use of prednisone and because of better knowledge, lupus has become a different illness, often with a two-phase pattern. The first phase is that of the serious illness or the period of increasingly severe symptoms that lead to diagnosis and treatment. In the second phase, the lupus patient is no longer seriously ill but rather chronically ill. In this phase, some patients have long remissions while other patients continue to have bothersome symptoms. The symptoms, though not life-threatening, will interfere with their ability to lead a normal life and will require continuing treatment, often in the form of a low dose of prednisone.

Why is it important that lupus patients be aware of this? Because lupus flares can still happen in this chronic phase and because nowadays patients can help their physician in identifying when a flare is starting. How is this possible? Because lupus is a disease that repeats itself, the symptoms that the disease has caused in the past are often the symptoms that tend to recur.

Today, most lupus flares do not happen overnight. Rather, patients will notice a slow but steady decrease in their well-being, often over a period of several days, weeks or months. Since the major problems of lupus often follow the milder symptoms such as increasing fatigue, pain in the joints, increasing hair loss, etc., the watchful patient will know that something is going on. Nobody knows his/her body better than the patient. It is the patient, not the physician, who will feel if the disease is flaring.

Knowing about lupus is important
It is important for the patient to be educated about the symptoms of lupus in order to identify when flares are beginning. When I have seen a patient for some time after diagnosis and the disease has been brought under control, we talk over their illness and make a list of the symptoms that were experienced at the onset or beginning of SLE. We are usually able to trace those symptoms back to a period several months before the diagnosis was made. Often these are symptoms that the physician cannot see such as increasing fatigue and loss of appetite.

While lupus is a disease that tends to repeat itself, patients may, during the course of their illness, develop new symptoms or warning signs. This makes it important for them to know the most common problems so they can recognize them and know they are important. I have included a list of these symptoms or warning signs at the back of this booklet in Appendix One called "Symptoms which may indicate a Lupus flare".

In the chronic phase of lupus, these symptoms may show up again and signal the start of another flare. The patient who notices these signs can bring them to the attention of the physician who will do a careful examination and order tests to check for other evidence. When caught at this stage, a small increase in the dosage of medication may be all that is necessary. If the physician is uncertain that a flare is occurring, and false alarms are frequent, the physician will want to see the patient more frequently in the weeks to come. At any rate, telling your physician will have made possible the early identification of a possible flare. Action will have been taken and a crisis will have been avoided.

Symptoms that don't go away
Part of the burden of lupus are those symptoms that hang on for several months after a flare is over or seem to never go away. I am thinking, in particular, of chronic fatigue, the lack of drive, the inability to do as much as one could before. These symptoms are frustrating and a major feature of lupus as a chronic illness. After the more severe part of a flare is over, these symptoms are often the hardest to combat.

often tell my patients that it is easier to treat the severe symptoms of lupus than to correct the fatigue or, as I call it, "the last 10 or 20% of well-being that is missing in order for you to feel perfect". This is a hidden disability resulting from the disease. You will have to learn to live with these symptoms and to adjust your activities to a less busy schedule that takes your limitations into account. Changes to medication can be made, such as increasing slightly the dose of prednisone or starting the drug hydroxychloroquine, to try and treat these symptoms. In many cases, the patient just has to learn to live with it.

Things that make you feel good or bad
Another way for lupus patients to lessen the burden of lupus is to look for things or activities that make them feel good. Patients should not feel guilty for doing exercises, eating a favorite food or, by all means, avoiding some activities they don't like. Throughout a lifetime of chronic illness, lupus patients will always find some things that make them feel better and they should feel at ease, not guilty, in indulging. And if, sooner or later, patients find a particular activity makes them feel worse, why not avoid it? Listen to your body.

The burden of fear in lupus
Lupus sufferers will experience the disease for the rest of their lives. It will modify their ability to work, will change their marital and family life, and will also change their social life. It may change the way they look and it will change the way they feel. New and strong emotions will surface and these have to be dealt with. Patients may feel sad, worried, angry and, perhaps, haunted by thoughts of dying even when the disease is under control. The fear of "what will come next", of the dreaded fatigue, of not being able to function, of the side-effects of the therapy, of going into a flare, of death - these are the burdens of the patient with SLE.

I believe that what eases these fears also eases a part of lupus and that is why I feel that patient education is so important. If I was not absolutely convinced of this, I would not have accepted the task of writing this booklet! The fact that you are reading it indicates your willingness to be educated about your illness. Ignorance of lupus generates fear but knowing about lupus generates confidence and will help you cope. So let us look at some of the more common fears experienced by lupus patients.

The fear of failing
The fear of inadequacy is a common trap for the lupus patient. A typical example is the young mother with lupus who is unable to look after her child and her household chores because she feels so tired and worn out. Because she cannot do these things, she feels guilty and inadequate as a wife and mother. Then, the feelings of guilt may become feelings of sadness and depression. If you feel inadequate and guilty, have your spouse read this paragraph and perhaps you could both discuss this with your physician.

Fear and depression
In some patients, these feelings of guilt and depression can become a very heavy burden and the physician may become concerned. Lupus is so complex that, at times, it is not clear if the emotions of the patient are related to the disease or to the treatment or to the normal difficulty in adapting to a serious illness. It could also be a combination of all these things or, perhaps, something completely unrelated. In this setting, I tell my patients that I need the opinion of a psychiatrist to help me sort things out and provide them with the best treatment.

Asking for the advice of a psychiatrist is no different from asking for the opinion of a dermatologist or any other specialist. However, many patients become upset, thinking that they are mentally disturbed. It is an unfortunate product of our society's attitude that while it is acceptable to be extremely sick physically, nothing should ever go wrong with the mind. Remember that, if ever needed, the advice of a psychiatrist can be extremely useful to the lupus patient.

The fear of a flare
Another aspect of the fear burden is the question "Is my disease getting worse? Am I becoming sick again?". Patients naturally look to their physician to answer this question. While their physician can often reassure them, the patient must learn to give the physician time to make a decision or come to a conclusion. Lupus is not a disease of absolute "yes" or "no". I do not hesitate to tell my patients that I need a little bit more time to know in what direction the wind is blowing and the patient must learn to live with this necessity. So give your physician a chance; lupus is a difficult disease to treat and physicians are constantly concerned about either undertreating or overtreating it.

The fear of a crisis
Many patients are afraid that their lupus will suddenly get worse, and this fear can leave them with a feeling of impending disaster. I think that most patients can now be reassured about this as, contrary to the situation of 30 years ago, physicians are better able to keep the disease under control. I believe that with regular follow-up, most patients need not fear becoming unexpectedly and severely ill with lupus.

The fear of death
It is not surprising that lupus patients in the middle of a serious flare or a crisis would think about death. Sometimes these thoughts linger on even after the crisis has passed and patients wonder how close to death they have been. Indeed, having a serious chronic illness (or dealing with it as a close family member or physician) does remind us that some day we will die. The lupus patient may wonder if lupus will make this happen sooner rather than later.

This fear is normal and there is no magic button that will make it go away. Like so many things about lupus, it has to be faced and dealt with. Often, an honest discussion with the physician will help the patient to remember that, even when things seem blackest, there is room for hope. Remember too that the survival rate is now over 90% and that each year the outlook is improving for lupus patients.

The patient's choice
What can patients do to alleviate or ease these fears? Patients should discuss their fears with their physician. Of course, this is easier said than done. No one likes to think or talk about fear or death. Patients are told to have confidence in their doctor. Again, this is easier said than done. However, a good, trusting relationship can develop, provided that the physician and the patient give each other time. I see lupus not only as a "chronic illness" to which the patient must learn to adapt but also as a "chronic doctor" to whom the patient must learn to adapt and vice versa. With time, patients can benefit tremendously by being honest and open with their doctor.

Often, patients hold back from asking a question fearing what the answer might be. In fact, that answer could prove reassuring. Don't keep your questions locked up inside, just ask! By doing this, you will not only be dealing with your fears in a positive, healthy way, but you will also be helping your physician to make decisions about treating your illness. Indeed, one of the major challenges of treating lupus is to separate lupus symptoms that need treatment from symptoms that do not. The physician must be constantly deciding what is dangerous to the patient and what is just troublesome. By asking questions and talking about their fears and concerns, patients can help their physician in making those important decisions.

What else can a patient do?
As you have seen, SLE is a complex disease. It is not always easy for your physician to answer all of your questions. Becoming a member of a support group of lupus patients can be extremely helpful in finding support and additional information, not only for yourself, but for your spouse and family as well. Talk to other patients. You will be amazed and reassured to find other people who have gone through what you are now experiencing. Through public meetings with health care professionals, newsletters, telephone networks and informal gatherings, lupus support groups will help you cope.

The Patient's Role in Controlling Lupus

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Lupus can be a serious disease and it is often very difficult to predict what will be the disease course in an individual patient. What is extraordinary is that lupus patients have in their hands some power to keep their disease under control by avoiding certain things. I know of few other illnesses that offer this opportunity.

Protect yourself from the sun

Sun exposure is known to be a cause of troublesome skin rashes in 50% of all patients. Not only do these rashes make patients feel self-conscious about their appearance, they may also ruin their plans, mean extra trips to the doctor and require more tests and treatments (various cortisone ointments or pills). To prevent this problem it is recommended that all patients use a sunscreen on all the exposed parts of the body. If you are not already sun sensitive, the odds may be as high as 50% that you will be eventually.

It is also important to know that sun exposure can cause a flare of internal lupus where the problems can be much more serious. The simple use of a sunscreen can help you avoid this danger. Staying out of direct sunlight does not protect you from the reflection of ultra-violet rays; you still need to use a sunscreen.

Look for a sunscreen with a sun protection factor (SPF) of at least 25, which blocks both UV-A and UV-B rays. This number is written on the front of the container and the higher the number the more protection you get. Paying more does not mean that you will have better protection than with a cheaper brand. You may have to try different brands to find one that feels comfortable and that does not stain your clothing. Remember to apply the sunscreen at least 30 minutes before going out to allow it to penetrate the skin and dry. Apply it again after swimming or a bath, even if you are using a water resistant brand. If you go skiing in the winter, don't forget to apply sunscreen to your face and ears. Sunscreens may also be useful for patients who are sensitive to fluorescent lights.

Do not smoke

Lupus patients must do all they can to ensure their general good health and this is reason enough to emphasize the importance of not smoking. In the past 30 years, the life expectancy has improved considerably for lupus patients, thanks in part to the use of steroids. Now that lupus patients are living much longer, some of them are victims of a long term complication of steroid use, premature coronary disease or heart attacks. While several other factors may contribute to this problem in lupus patients, the association of smoking with heart disease is such that lupus patients should not smoke.

Consult your physician about birth control

Birth control pills containing estrogen do not cause SLE but they are thought to increase the risk of flares in patients who already have the disease. Some birth control pills contain mostly progesterone or low-dose estrogens and these may cause fewer problems. For the lupus patient, barrier methods (condoms or diaphragms) and spermicidal agents are the safest forms of contraception. I advise that you discuss with your physician the use of birth control pills and alternative methods of contraception. If you have to use birth control pills, they should be prescribed by a physician who is familiar not only with contraception but also with SLE.

Choose the best time to become pregnant

If you want to become pregnant, your physician will be able to help you choose the best time. A lupus flare in pregnancy is of great concern because two lives are affected. The ideal time would be when your disease has remained in remission without any medication other than a small dose of prednisone or no prednisone at all (other medications may be harmful to the baby). SLE is also associated with a higher risk of miscarriage, premature delivery and other serious problems. As a result, pregnant lupus patients are best treated in High-Risk Pregnancy Clinics. If you become pregnant by accident, you should see your physician as soon as possible.

Know your antibiotics

Drugs containing sulfonamides (certain antibiotics used in the treatment of infections such as urinary infections) are best avoided as they may mimic a lupus flare by causing fever, arthritis, skin rashes, sunsensitivity and other problems. In general, lupus patients should not take antibiotics (or any drug) unless their physician feels that it is absolutely necessary. Canadians are plagued by colds during the cool season, however, most colds are caused by viruses and viral infections are not helped by antibiotics.

Do not experiment with special diets

It is certainly important that lupus patients maintain balanced and healthy eating habits, however, there is no special diet that can cure lupus. Any advertisement that claims otherwise is quackery. If such a miracle diet existed, I would be the first one to recommend it to my patients as it would make their lives (and mine) so much simpler. So-called "natural" products are today's fad and I used to be accepting whenever a patient told me they were eating these "natural" foods. Recently, however, there have been reports of lupus flares in patients taking alfalfa tablets and I think patients should not experiment with natural products without informing their physician.

I am also asked about the use of vitamins and, if a patient is on high doses of prednisone, I prescribe calcium and vitamin D supplements. Otherwise, there is no vitamin supplement that is scientifically proven to be helpful in SLE.

Say NO to quackery and to miracle cures
Some of the quack treatments being proposed to patients nowadays are so astonishing that I sometimes have the feeling we are back to witchcraft and the Middle Ages. Quackery is disgusting because it is based on lies and exploits the patient's vulnerability as a sick human being, hoping to get better. Unfortunately, there are always some people ready to make a dollar out of this hope.

Many quack remedies require that patients stop taking their medications so as to "cleanse the body". When drugs, such as prednisone, are needed to keep lupus under control, it is very dangerous to stop taking them. These miracle cures are made even more dangerous because patients often have to travel to another city, province or country to get them. If a serious flare should result, patients may well be far away from the medical team that can best help them and be unable to travel. The fact that some patients are prepared to take these risks shows how profoundly their lives have been affected by lupus.

The only way for SLE patients to maintain the same rapid pace of improvement is to invest their money in scientific research, not quack remedies.

As you have seen, there are many things that you can do, or avoid, to help keep your lupus under control. However successful the treatments or however careful patients are to avoid flares, lupus remains a chronic disease that will not always be controlled. In the next chapter, I will discuss how patients can learn to cope with the physical and emotional effects of living, day after day, with SLE.

Treating Lupus with Medications

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The vast majority of SLE patients can be treated successfully. Some patients have mild SLE that does not require any treatment although regular follow-up is still necessary. Even SLE patients who have required treatment can reasonably hope that a remission will occur when little or no treatment will be needed.

Ideally there should be only one physician in charge of supervising your illness and treatment and this approach is generally followed in the University Hospital Lupus Clinics across Canada. In these clinics, most patients are treated by physicians who have specialized in rheumatology (called rheumatologists). These physicians have received a particularly specialized training in lupus. As needed, consultation with other specialists is sought and many patients are also followed by physicians specialized in skin care (dermatologists), blood diseases (hematologists), kidney diseases (nephrologists) or immunologic diseases (immunologists).

In dealing with lupus, two approaches are used. First, the symptoms are treated if necessary and secondly, people with SLE are advised to avoid certain things that are known to cause a flare in some patients.

Medications to Treat the Symptoms of SLE

Drugs for Arthritis

Arthritis is probably the most common symptom of SLE and when it is mild no treatment may be needed. If the pain is more severe, many patients are satisfied with a basic pain medication such as acetaminophen (for instance, Tylenol or Atasol). Non-steroidal anti-inflammatory drugs (called NSAIDS for short) are often used when acetaminophen doesn't control the pain of arthritis. There are over 20 different drugs in this family of medications, including aspirin. Although some of the NSAIDS are available over the counter, it is best left to your doctor to decide which one you should use. Not every drug works well for every patient and you may have to try several NSAIDS before finding one that relieves your pain.

The NSAIDS may cause many side-effects, from stomach upset to changes in kidney function. Several of these side-effects can cause trouble as they may imitate lupus problems or complicate lupus problems that already exist. For this reason, NSAIDS are often prescribed to be taken for a short time only, with instructions to decrease the dose as the arthritis improves.

Hydroxychloroquine and chloroquine

The drugs hydroxychloroquine (Plaquenil ®)and chloroquine (Aralen ®) are very useful in treating sun sensitive skin rashes such as the discoid or the subacute types of lupus rashes. In many cases, rheumatologists prefer to use hydroxychloroquine because it is considered to be less toxic. However, dermatologists may prefer to use chloroquine to treat lupus rashes. This drug may also be tried if hydroxychloroquine is ineffective. While a sunscreen may often provide sufficient protection, some patients do get skin rashes in spite of the proper use of a good sunscreen. In these patients, hydroxychloroquine may be started in the spring and continued until the late fall.

Hydroxychloroquine is also used to treat lupus fatigue, arthritis and other milder symptoms of SLE. A recent study in several Canadian University Hospital Lupus Clinics has shown that hydroxychloroquine can help prevent flares in patients who have taken this medication continuously over a six month period.

At the relatively low dosage used in SLE (the dose is calculated based on the patient's weight), hydroxychloroquine seems to cause few problems. Apart from the pill's bad taste, the most common unwanted effect is some stomach upset. However, if hydroxychloroquine and chloroquine are taken in a high dose and over a long period of time, they may accumulate in the background of the eye (retina) and cause a loss of vision. In rare cases, blindness may occur. In over ten years of supervising patients on hydroxychloroquine, I have never seen a single case of damage to the eye but my more senior colleagues tell me that I probably will, eventually.

A series of precautions are taken to make certain that damage to the eye does not occur. Dosage is based on the body weight and, if possible, hydroxychloroquine is only used from spring to fall when the sun is the strongest. (However, many patients must take hydroxychloroquine for much longer periods.) Before hydroxychloroquine or chloroquine is started, patients must have their eyes examined by an eye doctor (ophthalmologist) and this examination should be repeated every six months. As well, patients started on these drugs should receive an Amsler grid and be told how to use it. The Amsler grid is a sheet of paper with many small squares (like a piece of graphing paper). Patients should inspect the squares regularly and if the lines are not clear, straight and square, they should see their eye doctor immediately. In my experience with hydroxychloroquine, eye damage will not get worse and sight will not be threatened if the drug is stopped at this early stage.

Cortisone and Prednisone

The single most important factor explaining the remarkable improvement in life expectancy of SLE patients has been the discovery of the steroid drug cortisone in 1948 and, shortly after, the related drug prednisone. Although the term cortisone continues to be used by patients and the public, SLE patients are now treated with the much more effective drug prednisone. This drug is the best inflammation-fighting drug available at the moment. Prednilosone is also used in Canada and, for some SLE patients, is the best drug available. These drugs are sometimes referred to as steroids, but they are not related to testosterone and the other anabolic steroids used by some athletes to build muscle.

The decision to prescribe prednisone is never made lightly by your physician. Prednisone is considered if the symptoms are not being well controlled by other treatment(s), if there is a concern that SLE may quickly get out of control unless prednisone is used or if SLE is severe and perhaps life-threatening.

On the bright side, prednisone is necessary for the successful treatment of many lupus patients. For some, it is a lifesaving drug and the single best drug available. However, this powerful drug has a dark side too. There is no doubt that prednisone can cause a wide variety of side-effects in both the short and the long term. If you are taking prednisone, it is important for you to know what these problems are. This information is included in Appendix Two at the back of the booklet, "Side-effects of prednisone". Patients will be happy to know that research is underway to find steroid drugs which would have the powerful inflammation-fighting action of prednisone with fewer unwanted side-effects.

At times, patients may be tempted to stop taking prednisone or to reduce or increase their dose. Perhaps they are fed up with the side-effects or perhaps they are feeling better or worse. It is important that patients taking cortisone understand how cortisone works and why stopping or changing the medication without the supervision of the physician is dangerous.

Cortisone is a chemical that is normally produced by the body, not a foreign substance. In fact, the body has a vital need for cortisone. When prednisone treatment is started, the body responds by stopping its own production of cortisone and the adrenal glands that produce it get sluggish and lazy. If prednisone is used for a period of time and then suddenly stopped, the body may not be able to start producing enough cortisone for some time. The result could be a life-threatening lack of cortisone (adrenal insufficiency). So prednisone should never be stopped suddenly. If you are tempted to stop taking your prednisone, do not do it. Rather, discuss the situation with your physician.

Other patients decrease or increase their dose on their own. This is unacceptable. If you feel well enough that you think prednisone could be decreased or if you feel worse and think that it should be increased, call your doctor. Never forget that both you and your doctor have worked very hard to improve your health. You should not put your improvement at risk by making any changes to your therapy.

Cyclophosphamide and Azathioprine

Cyclophosphamide (Procytox®) and azathioprine (Imuran®) are powerful drugs which are used in the treatment of certain SLE patients. One of these medications may be used when prednisone alone is unable to control SLE, when prednisone causes too many serious side-effects or when it is thought that combining the drug with prednisone may be better than using prednisone alone. These drugs work in SLE by changing the body's immune response and they are referred to as "immunosuppressive", "immunomodulatory" or "cytotoxic" drugs. Cyclophosphamide and azathioprine are usually given as pills and are generally not used together. As with other kinds of treatment, the decision to use one of these drugs is made on the basis of the symptoms and the condition of the patient. The dosage is based on the patient's weight.

Like all powerful drugs, the immunosuppressives have potential serious side-effects. The three most serious unwanted effects are changes to the bone marrow (where blood cells are produced) which may lead to a decrease in the number of red or white blood cells or platelets, increased risk of infections including infections to which we normally have resistance and a slightly increased risk of developing certain types of cancer. The risk of infection is particularly high when cyclophosphamide or azathioprine are combined with high doses of prednisone. Cyclophosphamide can also be associated with bleeding from the bladder (haemorrhagic cystitis) and failure of the ovaries to produce their normal output of hormones (ovarian failure). In practice, azathioprine is considered less toxic than cyclophosphamide. Obviously, these are very serious problems and patients taking these medications are watched very carefully by their physicians. Periodic blood tests are mandatory throughout the course of this therapy.

These problems have led to a recent report from the American National Institutes of Health on the use of intravenous cyclophosphamide in patients with severe kidney involvement in SLE. In this form of treatment, a much larger dose is given by vein (approximately 10 to 15 times more than the daily dose when given in pill form). By repeating this treatment every 4 to 12 weeks, kidney inflammation was very much reduced as were the serious side-effects (including risk of cancer). Many University Hospital Lupus Clinics in Canada now use this treatment for serious kidney involvement as well as for certain types of serious SLE problems. The procedure can be done on an outpatient basis or during a short stay in hospital. It should be kept in mind that although this form of treatment is better, it is still far from harmless, is used only for SLE patients with very serious disease and that our experience with it is short.

Living with Lupus what to expect

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A chronic illness, 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.

In the chronic phase, and especially in the remission phase (when it is easy to forget to take care), a person with lupus needs to avoid situations that can bring on a flare. These include getting too tired, intense stress, poor diet or other factors noticed by patient or doctor.

Lupus is a serious condition, but diagnosis and treatment are improving. Today it can be treated and controlled. More and more people with lupus are finding that they can be active and productive.

S.L.E Foundation : Life without Lupus Video

2008-05-17T13:22:00.001-04:00

Flares and What Triggers Lupus

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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 Causes of Lupus

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The cause(s) of lupus is currently unknown, but there are environmental and genetic factors involved. Some environmental factors which may trigger the disease include infections, antibiotics (especially those in the sulfa and penicillin groups), ultraviolet light, extreme stress, certain drugs, and hormones.

Scientists believe there is a genetic predisposition to the disease, as lupus is known to occur within families. However, there is no known gene or genes which are thought to cause the illness. There are recent discoveries of a gene on chromosome 1 which is associated with lupus in certain families. Previously, genes on chromosome 6 called "immune response genes" were also associated with the disease. Only 10 percent of lupus patients will have a close relative (parent or sibling) who already has or may develop lupus. Statistics show that only about five percent of the children born to individuals with lupus will develop the illness.

Lupus is often called a "woman's disease" despite the fact that many men are affected. Lupus can occur at any age, and in either sex, although it occurs 10-15 times more frequently among adult females than among adult males after puberty or after the emergence into sexual maturity. The symptoms of the disease are the same in men and women. People of African, American Indian, and Asian origin are thought to develop the disease more frequently than Caucasian women. The reasons for this ethnic selection are not clear.

Hormonal factors may explain why lupus occurs more frequently in females than in males. The increase of disease symptoms before menstrual periods and/or during pregnancy support the belief that hormones, particularly estrogen, may somewhat regulate the way the disease progresses. However, the exact reason for the greater prevalence of lupus in women, and the cyclic increase in symptoms, is unknown.

Lupus Lab Tests: Other Autoantibodies

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In those individuals with a positive ANA, additional tests can be done for certain particular antibodies that may better establish a diagnosis of SLE. The knowledge of which particular antibody is responsible for the positive ANA test can sometimes be helpful in determining which autoimmune disease is present. For instance, antibodies to DNA (the protein that makes up the body's genetic code) are found primarily in SLE. Antibodies to histones (DNA packaging proteins) are usually found in people with drug-induced lupus, but may also be found in those with SLE. Antibodies to the Sm antigen are found almost exclusively in lupus, and often help to confirm the diagnosis of SLE. Antibodies to RNP (ribonucleoprotein) are found in a number of connective tissue diseases. When present in very high levels, RNP antibodies are suggestive of mixed connective tissue disease, a condition with symptoms like those of SLE, polymyositis, and scleroderma.

Antibodies to Ro/SS-A are found in people with either lupus or Sjogren's syndrome, and are almost always found in babies who are born with neonatal lupus. Antibodies to Jo-1 are associated with polymyositis, while antibodies to PM-Scl are associated with certain cases of polymyositis that also have features of scleroderma. Antibodies to Scl-70 are found in people with a generalized form of scleroderma, and antibodies to the centromere (a structure involved in cell division) are found in people with a limited form of scleroderma which tends to have a chronic course.

Complement
Laboratory tests which measure complement levels in the blood may also be helpful to the physician in making a diagnosis of SLE. Complement is a blood protein that destroys bacteria and also influences inflammation. Complement proteins are identified by the letter "C" and a number. The most common complement tests are C3, C4, and CH50. If the total blood complement level is low, or the C3 or C4 complement values are low and the person also has a positive ANA, some weight is added to the diagnosis of lupus. Low C3 and C4 complement levels in individuals with a positive ANA may signify the presence of active disease, especially kidney disease.

Biopsy

Sometimes examination of a tissue sample (biopsy) can be helpful in making a diagnosis. The biopsy is one of the best ways to evaluate an organ or tissue. The procedure involves removal of a small sliver of tissue, which is then examined under a microscope. The doctor can use the biopsy to identify the amount of inflammation and damage to the tissue. Further tests can be performed on the specimen to determine whether the problem is due to lupus or is caused by some other factor such as infection or medication. Almost any tissue can be biopsied. The most common sites biopsied in lupus are the skin and kidney. The results of the biopsy, like any other laboratory test, should be examined in combination with the individual's medical history and clinical findings.

Tests to Assess Disease Activity

When a person diagnosed with lupus develops new or recurring symptoms, laboratory testing of blood or urine can help determine if the symptoms are due to an increase in lupus activity. Disease activity correlates with a rise in:

-CRP (C-reactive protein) binding
-Sedimentation rate, or ESR
-Anti-DNA
-Liver and kidney function tests (AST, ALT, BUN, creatinine)
-CPK (muscle enzyme)
-Urine protein or cellular casts

Disease activity also correlates with a fall in:

-CBC (white blood cell count, hemoglobin, platelets)
-Complement components
-Serum albumin

Putting It All Together

The interpretation of all these tests, and their relationship to symptoms, can be difficult. When a person has many symptoms and signs of lupus and has positive tests for lupus, it is easier for physicians to make a correct diagnosis and begin treatment. It is more common for an individual to report vague, seemingly unrelated symptoms of achy joints, fever, fatigue, or pain, and to have negative or borderline test results. Fortunately, with growing awareness of SLE, an increasing number of physicians will consider the possibility of lupus in the diagnosis. While these tests are useful only when their strengths and limitations are understood, in the hands of skilled physicians these are important tools that assist in diagnosing lupus.

Lab Tests for Lupus: The Antinuclear Antibody (ANA or FANA) Test

2008-04-16T09:21:00.002-04:00

The immunofluorescent antinuclear antibody (ANA or FANA) test is a sensitive test for lupus, since it is present in 97 percent of those with the disease. When three or more typical clinical features are present, such as skin, joint, kidney, pleural, pericardial, hematological, or central nervous system findings as described above, a positive test confirms the diagnosis.

The ANA test is positive in almost all individuals with systemic lupus, and is the most sensitive diagnostic test currently available for confirming the diagnosis of systemic lupus when accompanied by typical clinical findings. A negative ANA test is strong evidence against lupus as the cause of a person's illness, although there are very infrequent instances where SLE is present without detectable anti-nuclear antibodies. ANA-negative lupus can be found in people who have anti-Ro (SSA) or antiphospholipid antibodies. However, a positive ANA test, by itself, is not proof of lupus since the test may also be positive in:

other connective tissue diseases such as scleroderma, Sjogren’s syndrome, rheumatoid arthritis, and thyroid disease, as well as liver disease and juvenile arthritis
individuals being treated with certain drugs, including procainamide, hydralazine, isoniazid, and chlorpromazine
viral illnesses such as infectious mononucleosis, and other chronic infectious diseases such as hepatitis, lepromatous leprosy, subacute bacterial endocarditis, and malaria
other autoimmune diseases, including thyroiditis and multiple sclerosis

The test can even be weakly positive in about 20 percent of healthy individuals. While a few of these healthy people may eventually develop lupus symptoms, the majority will never develop any signs of lupus or related conditions. The chances of a person having a positive ANA test increases as he or she ages.

Finally, as many as 30-40 percent of asymptomatic first degree relatives (siblings, parents, and children) of people with lupus may have a positive ANA test.

ANA Titers (number) and Patterns

ANA reports include a titer (pronounced TY-tur), and a pattern. The titer indicates how many times the lab technician had to dilute plasma from the blood to get a sample free of the antinuclear antibodies. For example, a titer of 1:640 shows a greater concentration of anti-nuclear antibodies than a titer of 1:320 or 1:160.

The apparent great difference between various titers can be misleading. Since each dilution involves doubling the amount of test fluid, it is not surprising that titers increase rather rapidly. In actuality, the difference between a 1:160 titer and a 1:320 titer is only a single dilution. This does not necessarily represent a major difference in disease activity. ANA titers go up and down during the course of the disease, and a high or low titer does not necessarily mean the disease is more or less active. Therefore, it is not always possible to determine the activity of the disease from the ANA titer.

A titer above 1:80 is usually considered positive. However, some laboratories may interpret different titer levels as positive, so one cannot compare titers from different laboratories.

The pattern of the ANA test can sometimes be helpful in determining which autoimmune disease is present and which treatment program is appropriate. The homogeneous (smooth) pattern is found in a variety of connective tissue diseases, as well as in people taking particular drugs such as certain anti-arrhythmics, anti-convulsants or anti-hypertensives. This pattern is also the one most commonly seen in healthy individuals who have positive ANA tests. The speckled pattern is found in SLE and other connective tissue diseases, while the peripheral (rim) pattern is found almost exclusively in SLE. The nucleolar (a pattern with a few large spots) pattern is found primarily in people who have scleroderma.

Because the ANA is positive in so many conditions, the results of the ANA test have to be interpreted in light of the person's medical history, as well as his or her clinical symptoms. Thus, a positive ANA alone is never enough to diagnose lupus. On the other hand, a negative ANA argues against lupus but does not rule out the disease completely.

A Positive ANA Does Not Equate to Having a Disease

The ANA should be looked at as a screening test. If it is positive in a person who is not feeling well and who has other symptoms or signs of lupus, the physician will probably want to conduct further tests for lupus. If the ANA is positive in a person who is feeling well and in whom there are no other signs of lupus, it can be ignored. If there is any doubt, a consultation with a rheumatologist should clarify the situation.

Coping with Lupus

2008-03-21T10:55:00.001-04:00

Learning to live with lupus is like anything else in life; like becoming a parent, starting a new job, making an investment or buying a car. One has to learn how to do it and this learning does not happen overnight. Life is made up of pleasures and of obligations. Clearly, lupus can be quite an obligation but, depending on the person, the burden of this obligation may be lighter or heavier.

One key to coping with the illness is to get organized. Managing the day to day aspects of your lupus will help you to be in better control. Below I have listed some practical tips that will help you take care of your lupus responsibilities.

1.See your doctor regularly and do not postpone your visit because you "feel so well". Make a list of all your questions and bring it to your next appointment.

2.Make a list of all your pills or medications to each appointment. This helps your doctor identify "that little yellow pill" that was prescribed by "that other physician". Knowing all your medications, your doctor may be able to cut down on the number you are taking, which is nice and saves money too.

3.Buy a multi-compartment pill box in any pharmacy so that you can lay out your pills for each day or week. This makes it easy to check if you have forgotten to take your medications.

4.If your doctor orders a urine collection over 24 hours, collect your urine from Sunday to Monday morning and bring it into the hospital on your way to work. Carrying around a jug of urine may be embarassing but do your best not to lose a drop. Important decisions about the management of your disease will be made, in part, based on the results of this collection. (Urine collection should not be done during menstruation.)

5.If your blood pressure is checked by your family doctor, the nurse at work or by yourself, don't forget to bring these readings to your next appointment. (Readings done at the Lupus Clinic are often higher and this can cause unnecessary concern.)

6.Purchase a thermometer. If you feel that you are running a fever, take your temperature every six hours and wrrite down the results. If the problem continues and is not explained by a cold or the flu, call your physician.

7.Be prepared for blood tests to be taken regularly, even when everything seems fine. SLE is unpredictable and the sooner a flare is detected, the better.

Lab Tests for Lupus

2008-03-21T10:35:00.003-04:00

Because many symptoms of systemic lupus erythematosus (SLE) mimic those of other illnesses, lupus can be a difficult disease to diagnose. Diagnosis is usually made by a careful review of three factors:

1. the individual's entire medical history;
2. the individual's current symptoms; and
3. an analysis of the results obtained in routine laboratory tests and some specialized tests related to immune status.

To make a diagnosis of SLE, an individual must show clinical evidence of a multi-system disease (i.e. has shown abnormalities in several different organ systems). The following are typical symptoms or signs that might lead to suspicion of SLE:

1. Skin: Butterfly rash across the cheeks; ulcers in the mouth; hair loss.
2. Joints: Pain; redness, swelling.
3. Kidney: Abnormal urinalysis suggesting kidney disease.
4. Lining membranes: Pleurisy (inflammation of the lining of the lung); pericarditis (inflammation of the heart lining); and/or peritonitis (inflammation around the abdomen). Taken together, these types of inflammation are known as polyserositis.
5. Blood: Hemolytic anemia (the red cells are destroyed by autoantibodies); leukopenia (low white blood cell count); thrombocytopenia (low number of platelets).
Lungs: Infiltrates (shadowy areas seen on a chest x-ray) that come and go
6. Nervous system: Convulsions (seizures); psychosis; nerve abnormalities that cause strange sensations or alter muscular control or strength.

If an individual has several of these symptoms, the physician will then usually order a series of tests to examine the functioning of the individual's immune system. In general, physicians look for evidence of autoantibodies. Although there is no one test that can definitely say whether or not a person has lupus, there are many laboratory tests which aid the physician in making a lupus diagnosis.

First, there are routine clinical tests which suggest that the person has an active systemic disease. These include the sedimentation rate (ESR) and CRP which are frequently elevated in inflammation from any cause. Serum protein electrophoresis may reveal increased gammaglobulin and decreased albumin, and routine blood counts may reveal anemia and low platelet and white cell counts. Finally, routine chemistry panels may reveal kidney involvement by increases in serum blood urea nitrogen and creatinine, abnormalities of liver function tests, and increased muscle enzymes (such as CPK) if muscle involvement is present. These kinds of abnormalities alert the doctor to the presence of a systemic disease with multiple organ involvement.

Commonly used blood tests in the diagnosis of SLE are:

1. The anti-nuclear antibody test (ANA) to determine if autoantibodies to cell nuclei are present in the blood
2. The anti-DNA antibody test to determine if there are antibodies to the genetic material in the cell
3. The anti-Sm antibody test to determine if there are antibodies to Sm, which is a ribonucleoprotein found in the cell nucleus
4.Tests to examine the total level of serum (blood) complement (a group of proteins which can be consumed in immune reactions), and specific levels of complement proteins C3 and C4

In coming posts I will be goin through these Blood tests individualy..

Symptoms of SLE Continued

2008-02-17T12:29:00.002-05:00

3. Discoid lupus is a scaly, raised rash that appears on the face, scalp, ears, chest or arms in 25% of SLE patients. The rash, if untreated, may leave permanent scars. Involvement of the hair roots on the scalp may also cause permanent damage in the form of bald spots but widespread or total baldness is rare. The rash is photosensitive (it will get worse after being in the sun) but this can be avoided if the proper sunscreens are used. In Canada, patients typically experience the reappearance or worsening of discoid lesions during spring and summer. The use of a sunscreen for protection and appropriate treatments can usually reduce or control this problem. It is important to be aware that approximately 10% of discoid lupus patients will eventually develop a usually mild form of SLE. As a result, discoid lupus patients are tested for SLE from time to time.

4. Mucosal ulcers are small sores that occur on the mucous lining of the mouth or nose in as many as 40% of SLE patients. Mouth ulcers most often occur on the roof of the mouth and, because these are usually painless, the patient may not notice them except, perhaps, when eating spicy foods. Painful canker sores happen to lupus patients too but are different from lupus ulcers. Nose ulcers are usually painless but they may cause nosebleeds which, if frequent, should be brought to the physician's attention.

5. Arthritis is very common in SLE. In fact, it is unusual for patients with SLE not to have arthritis sooner or later. It causes pain in the joints of the hands, wrists, elbows, knees or other joints in the arms and legs. (Lupus arthritis does not cause back pain although patients may experience back pain from other causes.) The pain may be migratory, meaning that it goes from one joint to another, and it may occur in the same joint on both sides of the body. Signs of inflammation (swelling, redness, heat) may not show up but, when SLE is very active, the inflammation and pain may be severe.Both the patient and the physician can become very frustrated by the arthritis of SLE. Because the pains move from joint to joint and can appear and disappear quite quickly, the patient may not have any signs of arthritis at the time of their appointment. As a result, diagnosing arthritis in the patient can take quite a long time.
Lupus arthritis is usually not crippling and patients should not fear becoming wheelchair bound (although the use of a wheelchair is sometimes necessary in SLE due to causes other than arthritis). Changes (deformities) in the fingers do sometimes happen as a result of arthritis but this does not usually cause a major loss of function.

6. Pleuritis is inflammation of the pleura, the lining of the lungs, and pericarditis is inflammation of the pericardium, the lining of the heart. These problems may occur alone or together and affect at least 50% of all SLE patients. Pleuritis, and sometimes pericarditis, cause a particular type of chest pain that gets worse when breathing in and gets better or goes away when breathing out. Patients may also have less pain when sitting or standing and more pain when lying down. If the pain is severe, the person may be limited to shallow breathing only. Lupus patients who experience a second bout of pleuritis or pericarditis later in the course of their disease often readily point out that "...the pain is like it was the first time...".
While there are many benign (not serious) causes of chest pain, it is wise to inform your doctor immediately if you experience such a pain. By examining you, and performing tests such as a chest x-ray, heart ultrasound and electrocardiogram (ECG), your physician will be able to make a diagnosis and, if necessary, start treatment.

7. Kidney involvement ranges from very mild to very serious. It is believed that most, if not all, patients with SLE have at least some mild degree of kidney (or renal) involvement. When mild, this involvement is usually not a problem. However, in 50% of patients, kidney damage may occur and this is of concern because it may lead to a loss of the kidney's ability to clean the blood. An upsetting feature of SLE kidney involvement is that it tends to remain silent (the patient will not have any symptoms) until damage has already occurred. Then the patient will complain of weight gain and swelling, particularly in the feet and legs. Doctors call this fluid retention or oedema and it is the most common symptom of major kidney involvement.
It is very important to detect kidney involvement early because some of the deaths caused by SLE are related to severe kidney involvement. For this reason, regular tests of kidney function (simple urine and blood tests) will be ordered by your physician. Urine analysis and tests of kidney function are best performed from time to time, even when lupus seems to be quiet. Regular testing of the kidneys is absolutely necessary whenever lupus is active. Urine analysis can show various signs of inflammation in the kidney such as clumps of red blood cells (called cylinders or casts) or the presence of an excessive amount of protein. To determine how much involvement is present, doctors measure the amount of protein and the performance of the kidneys on all your urine collected over a 24 hour period. In this way, early involvement of the kidneys can be discovered and, if necessary, treatment can be started.Although most patients with SLE never develop kidney involvement that requires the use of artificial blood filtration (dialysis), some patients clearly will. Because kidney involvement can be so serious, affected patients should be evaluated by a nephrologist, a physician who specializes in treating diseases of the kidney.

8. Seizures (epilepsy) and psychosis are serious problems caused by central nervous system (CNS) involvement in SLE, and occur in 15-25% of patients. These problems can be caused by many disorders other than SLE so doctors must take the time to rule out other conditions before deciding that SLE is the true culprit. It is important to be aware that, with CNS involvement, other types of problems may occur which are not as serious as seizures or psychosis.Seizures most commonly involve loss of consciousness and involuntary body movements. The person does not usually recall what happened and descriptions by relatives or friends who witnessed the seizure are most helpful. Seizures can usually be confirmed by performing an electroencephalogram (EEG) which is a reading of the electrical activity of the brain. Fortunately, several drugs are available to control seizures in SLE patients.When seizures are the first symptom experienced by the patient, SLE may not be suspected until other lupus problems appear. This can cause confusion, as physicians may wonder if the other symptoms were triggered by the anti-epileptic drugs. In other words, is this drug-induced lupus? In most cases the answer is no and the seizures will begin again if the anti-epileptic drug is stopped.Psychosis is a serious mental condition where thinking and behavior are disturbed, often including hallucinations (seeing or hearing things that aren't there) and delusions (false notions or ideas, for instance the belief that one is being poisoned). Relatives may say that the person has partly or completely lost contact with reality. Other symptoms may be present such as confusion (the person does not know where he/she is, what the time and date are and may not recognize family members or close friends). Many doctors think that SLE psychosis is best treated with prednisone or a steroid drug.

9. Disorders of the blood cells are caused by autoantibodies that attack one of the blood cells or particles, usually the red or white cells or platelets. It is important to understand that these problems may have causes other than SLE. In all cases, doctors must rule out the other possible causes before treating these problems as related to lupus. Red blood cells may be attacked, resulting in a large number of cells being destroyed and removed from the body in the spleen, a process called hemolytic anemia. This destruction may be slow and relatively mild or may be very quick and cause an emergency. Prednisone is effective in treating this anemia in most people but sometimes the spleen must be removed to bring the anemia under control.
SLE commonly causes a decrease in the white blood cells called leukopenia. In most instances this is not dangerous and by itself does not require treatment.Platelets are cell particles that control the clotting of blood. Autoantibodies to platelets may cause the platelet count to drop, a situation called thrombocytopenia. Some SLE patients continue to have, over time, lower than normal platelet counts which do not require treatment but do need to be checked regularly. In others, a severe decrease in the platelet count can cause bleeding in various parts of the body such as the digestive tract, the urinary tract, the uterus or the brain. This is a serious situation that requires treatment with prednisone and, sometimes, removal of the spleen. Easy bruising of the skin may be a sign of a decreased platelet count but it also occurs in normal individuals or can be caused by prednisone. In my experience, these explanations account for far more cases of bruising than does a low platelet count.

10. Immunologic disorders refer to four autoantibodies found in the blood which, when taken with other symptoms, point to SLE.The lupus erythematosus cell preparation (doctors say LE prep) test is positive when a particular cell (the LE cell) is found in the blood of patients with active SLE. However, the LE cell is sometimes found in disorders other than SLE and most doctors have stopped using this test simply because better tests are now available.Anti-native DNA autoantibodies are common in SLE and it would be unlikely that they would be seen in other diseases. This test is repeated often because the amount of anti-native DNA autoantibodies seems to increase when lupus is active and the test can help the physician measure the degree of disease activity.Anti-Sm autoantibodies refer to the name of the first patient in whose blood they were found (her name was Smith). These antibodies point to SLE.A false-positive test for syphilis, which happens in approximately 20% of SLE patients, suggests that patients have the venereal disease called syphilis when, in fact, they don't. This is another of SLE's sneaky thousand faces and one that has caused a lot of fright and upset. When a diagnosis of SLE is suspected, doctors simply request this blood test for syphilis (V.D.R.L.) and, if it is positive, further tests are done that can show whether or not syphilis is actually present.

11. Antinuclear antibodies, or ANA, are found in the blood in almost every patient with SLE. This test has made the diagnosis of SLE more certain, as it is very accurate, but three cautions must be kept in mind. The first is that ANA may be present as a reaction to various drugs, may be present in diseases other than SLE and may be present in healthy individuals, particularly the elderly. Therefore, a positive ANA must always be looked at in light of other symptoms of SLE. The second caution is that the improved methods of testing for ANA have found small amounts of ANA in the blood of many apparently healthy people. Therefore a positive ANA does not necessarily mean a diagnosis of SLE. The third caution is that a positive ANA test should be repeated to be absolutely sure.In rare cases, a diagnosis of SLE will be made even when the ANA test is not positive. Some patients with several specific symptoms of lupus will not develop a positive ANA until later on in their disease. Other patients may have a particular autoantibody in their bloodstream called anti-Ro (from Robert who was the first person identified with this antibody) which is poorly detected by standard ANA tests. In these cases, there is a specific test for anti-Ro that is available at University Hospitals.

What are the Symptoms of SLE (Systemic Lupus Erythematosus)

2008-01-25T09:11:00.001-05:00

Non-specific Symptons

The word non-specific is used by doctors to describe symptoms that can occur in many illnesses other than Lupus. They include fatigue, weight changes, fever, and swollen glands. Because these symptoms can arise from other illnesses, they can be connected to Lupus only after some of the specific symptoms begin to develop.

Fatigue: is the most frequent symptom that affects patients with Lupus. The degree of tiredness is far greater than the activities of the patient would indicate. Lupus fatigue leaves the person feeling extremely drained and without energy. With experience, most patients can learn the difference between normal tiredness and Lupus fatigue which is very helpful to their doctor in determining how active their Lupus has become.

Unexplained and continuing Weigh loss:of more than 5 pounds can be caused by SLE. Weight loss may occur slowly (20 pounds over a one year period) or very quickly (20 pounds in 2 months). Weight gain that occurs, even though the diet remains the same, may be caused by swelling, particularly in the feet and legs. This swelling may be related to Kidney, heart, blood vesselr or other organ involvement in Lupus. If the swelling continues, it requires prompt medical attention.

Fever:is another non-specific symptom that may occur in many illnesses such as the common cold or the flu. However, low-grade fever that lasts a long time or sudden, high fevers may indicate the SLE is becoming active or that a serious infection may be present. Fever is therefore always taken seriously by physicians who treat Lupus patients.

Swollen glands: If many swollen glands suddenly appear this may be a sign of SLE, particularly if they occur along with

Symptoms Specific to Lupus

Specific symptoms are caused by involvement of one or several organs of the body. SLE can affect the organs in any combination imaginable and a complete list of all SLE symptoms would fill many booklets. To help distinguish SLE from other diseases, doctors of the American Rheumatism Association have established a list of 11 abnormalities which, when combined point to SLE. These abnormalities include symptoms (What you can feel, such as pain), signs (what your physician can see during an examination) and changes in laboratory tests.

To make a diagnosis of SLE, the patient must have had at least 4 of these 11 abnormalities at any time since the beginning of the disease. Some of the items on the list have as many as 4 possible abnormalities but only 1 of them needs to be present for a particular condition to be met.

To make a diagnosis of Lupus at least 4 of these 11 criteria must be present:

1.The butterfly rash: is a red rash that occurs over the cheeks and often over the bridge of the nose. This rash eventually happens to 50% of all SLE patients. It may be flat or raised and should not be confused with simple blushing or the redness that comes with fever. Some people notice a feeling of warmth in the area of the rash while others do not. The rash can be so faint that only the physician will notice it or it can be obvious to the point of being commented on by relatives or friends.

2. Photosensitivity: an excessive skin reaction to sunlight (causing rash) that occurs in at least 50% of patients. Usually, only the exposed skin is involved while skin that is covered by clothing is spared. Your physician will decide that photosensitivity is present only if there is a sudden change in your usual reation to sunlight . Some Lupus patients experience photosensitivity indoors, especially when exposed to fluorescent lights.

Stay tuned for the other symptoms

Types of Lupus

2008-01-22T15:15:00.000-05:00

There are four types of lupus: discoid, systemic, drug-induced and neonatal lupus.

Discoid (cutaneous) lupus is always limited to the skin. It is identified by a rash that may appear on the face, neck, and scalp. Discoid lupus is diagnosed by examining a biopsy of the rash. In discoid lupus the biopsy will show abnormalities that are not found in skin without the rash. Discoid lupus does not generally involve the body's internal organs. Therefore, the ANA test may be negative in patients with discoid lupus. However, in a large number of patients with discoid lupus, the ANA test is positive, but at a low level or "titer." In approximately 10 percent of patients, discoid lupus can evolve into the systemic form of the disease, which can affect almost any organ or system of the body. This cannot be predicted or prevented. Treatment of discoid lupus will not prevent its progression to the systemic form. Individuals who progress to the systemic form probably had systemic lupus at the outset, with the discoid rash as their main symptom.
Systemic lupus is usually more severe than discoid lupus, and can affect almost any organ or organ system of the body. For some people, only the skin and joints will be involved. In others, the joints, lungs, kidneys, blood, or other organs and/or tissues may be affected. Generally, no two people with systemic lupus will have identical symptoms. Systemic lupus may include periods in which few, if any, symptoms are evident ("remission") and other times when the disease becomes more active ("flare"). Most often when people mention "lupus," they are referring to the systemic form of the disease.
Drug-induced lupus occurs after the use of certain prescribed drugs. The symptoms of drug-induced lupus are similar to those of systemic lupus. The drugs most commonly connected with drug-induced lupus are hydralazine (used to treat high blood pressure or hypertension) and procainamide (used to treat irregular heart rhythms). Drug induced lupus is more common in men who are given these drugs more often. However, not everyone who takes these drugs will develop drug-induced lupus. Only about 4 percent of the people who take these drugs will develop the antibodies suggestive of lupus. Of those 4 percent, only an extremely small number will develop overt drug-induced lupus. The symptoms usually fade when the medications are discontinued.
Neonatal lupus is a rare condition acquired from the passage of maternal autoantibodies, specifically anti-Ro/SSA or anti-La/SSB, which can affect the skin, heart and blood of the fetus and newborn. It is associated with a rash that appears within the first several weeks of life and may persist for about six months before disappearing. Congenital heart block is much less common than the skin rash. Neonatal lupus is not systemic lupus.

Lupus on Global News

2008-01-22T15:05:00.000-05:00

I have hypersensitive hearing when it comes to Lupus and last night, I heard Global News mention Lupus, so of course I watched and found out that three genese were found so far that cause Lupus. Here is the article posted on Global TVs website.

Studies home in on lupus cause
JASMIN LEGATOS, The Gazette

After two strokes and seven years, Miriam Gaudelli was finally diagnosed with lupus at 21.

Now 25, Gaudelli, president of Lupus Canada for Quebec, often hears similar stories of sufferers misdiagnosed for years.

That's because the illness, dubbed the disease with a thousand faces, can affect the joints, kidneys, heart, skin and brain and requires three or four symptoms to occur simultaneously in order to be diagnosed, she said.

But now an international team of researchers, which includes a group from the Montreal Heart Institute, have discovered three genes that cause the illness.

"We can now study these genes to find out what they are doing in the normal state and what they are doing in the disease," said John Rioux, an associate professor of medicine at the Université de Montréal and a researcher at the Montreal Heart Institute.

In people affected by lupus, the immune system produces antibodies that attack their own tissues, resulting in inflammation of the specific tissue or the body's organs.

Lupus Canada estimates that anywhere between 15,000 and 50,000 Canadians have lupus and women are nine times more likely to develop the disease than men.

The new studies are also important because it's the first time scientists were able to scan all 30,000 genes in the human genome, Rioux said.

"(Before) you had to pick your favourite gene that you thought, in the scientific sense, had a role to play in the disease and do a genetic test," he said.

However technology developed in recent years leaves the guesswork behind, he added.

Although researchers know little about the three genes discovered in the study, they are the first pieces of a complex puzzle, Rioux said.
"If we can start building up a knowledge of these different pieces, we can figure out which genes go with which type of symptom. Then you can figure out how to better treat these patients."

Lupus on Good Morning America

2008-01-20T11:12:00.001-05:00

The Definition of Lupus

2008-01-20T10:49:00.000-05:00

"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

2008-01-20T10:08:00.000-05:00

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.