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Frequently Asked
Questions About Lupus
1. What is lupus?
- What does autoimmune
mean?
- What is inflammation?
- What happens in autoimmune
diseases like lupus?
- Where did the name come from?
- Who gets lupus?
- What are the symptoms of lupus?
2. Different kinds of lupus
3. Can you catch lupus?
4. Is lupus a fatal disease?
- Death in lupus, what
is it due to?
5. Cancer
- Is lupus a form of cancer?
- Are people with lupus more
likely to develop cancer?
- Cancer treatment in lupus,
any special considerations?
6. AIDS and lupus, are they alike?
7. Lupus anticoagulant
- Does the lupus anticoagulant
mean I have lupus?
- Can you have antiphospholipid
antibodies and not lupus?
- Can you have antiphospholipid
antibodies and not have related
symptoms?
8. MS and lupus
- MRI findings in CNS lupus
9. Childhood lupus, prognosis
LUPUS OF THE SKIN
10. Symptoms of cutaneous lupus (lupus
of the skin, "discoid")
- Different types of rashes
- Diagnosis
- Specialist in lupus of the
skin treatment
11. Cutaneous (skin) vs systemic lupus
12. Hair loss
13. Make-up
14. Hives and burning sensation
15. Photosensitivity
DRUG-INDUCED LUPUS
16. Drug-induced lupus
CAUSE
17. What causes lupus?
18. Is it hereditary?
- Where is genetic research
being done?
19. Can I have my children tested?
20. What can trigger lupus?
- Is stress related?
- Are flares related to hormones?
- Are there medications to avoid?
- Does it occur more often in
certain geographical areas?
- Is lupus related to pollution
or toxic chemicals?
- Does something in the diet
cause lupus?
21. Silicone breast implants
- Any connection with lupus?
- If removed, will my symptoms
improve?
22. Aspartame- artificial sweetener
DIAGNOSIS
23. Is there a test for systemic
lupus?
24. Why is SLE so difficult to diagnose?
- How is it diagnosed?
- The ANA test - used as a screening
test
25. Confusion about diagnosis
- I have all the symptoms,
but the Dr. says it is not lupus!
- Early as possible diagnosis
- Can anything be prescribed
to relieve the pain if I'm not diagnosed
- Borderline ANA
- Positive ANA, not lupus, but
a CONNECTIVE TISSUE disease
- Negative ANA, not lupus, can
I have lupus and a negative ANA?
- What kind of doctor can diagnose
lupus?
- If I am in the process of
developing lupus, can I do anything to slow its
development?
- Positive ANA and fibromyalgia
LIVING WITH LUPUS
26. I have lupus. Are there any do's
or don'ts regarding:
- Diet
- Vitamins
- Exercise
- Fatigue
- Sleep
- Medications
- Work schedule
27. How to recognize a flare
- When to call the doctor
- Flare, how long will it last?
- Persistent flare without a
remission
28. What can I expect in the future?
Will I:
- Be able to have a family?
- Be able to continue working
full-time?
- Live long enough to see my
children grow up?
- Become crippled and end up
in a wheelchair?
29. Pain management
30. Dental Fillings
31. Hair dyes
32. Can lupus cause memory problems?
TREATMENT
33. Is there a cure for lupus?
34. How is lupus treated?
- I don't want to go on prednisone.
What else can I take?
- Weight gain brought on by
prednisone?
- Herbs and Vitamins?
35. Where is the BEST place to go for
diagnosis and treatment?
ALTERNATIVE MEDICINE
36. Massage
37. Acupuncture
38. Alternative treatments
RESEARCH
39. Research
- Is there any research being
done on lupus?
- Where is research being done?
- Where does the NIAMS lupus
research take place?
- What do we now know as a result
of NIAMS supported research?
- Are there any studies on the
use of estrogen in lupus?
- NIAMS Registries for Lupus
and Lupus Related Conditions
- NIAMS/NIH budget information
- Does the Lupus Foundation
of America do research?
- How do I find out more about
the LFA's Research Grant program?
- How close are we to a cure?
WORK/INSURANCE/DISABILITY
40. Is lupus included in the Americans
with Disabilities Act (ADA)?
41. Is there a list of insurance companies
that cover lupus?
42. Is financial assistance available?
43. Social Security Disability
- Applying
- Definition of disability
- Eligibility
- Not eligible, what then
- Difficulty in getting disability
- Denied benefits, what next
- Attorneys specializing in
disability law
If you have questions that are not covered here or
elsewhere in this site, Contact
LFA
FREQUENTLY ASKED QUESTIONS ABOUT LUPUS
1. What is lupus?
Lupus is a chronic (long-lasting) autoimmune disease
in which the immune system, for unknown reasons, becomes
hyperactive and attacks normal tissue. This attack results
in inflammation and brings about symptoms.
What does autoimmune mean?
Literally it means immune activity directed against
the self. The immune system fights the body itself (Auto=self).
In autoimmune diseases, the immune system makes a mistake
and reacts to the body's own tissues.
What is inflammation?
Literally it means setting on fire. It is a protective
process our body uses when tissues are injured. Inflammation
helps to eliminate a foreign body or organism (virus,
bacteria) and prevent further injury. Signs of inflammation
include; swelling, redness, pain and warmth. If the
signs of inflammation are long lasting, as they can
be in lupus, then damage to the tissues can occur and
normal function is impaired. This is why the treatment
of lupus is aimed at reducing the inflammation. Reference:
see Facts & Overview, What is Lupus?
What happens in autoimmune diseases like lupus?
The immune system is designed to protect and defend
the body from foreign intruders (bacteria, viruses).
You can think of it like a security system for your
body. It contains several different types of cells,
some of which function like "security guards" and are
constantly on patrol looking for any foreign invaders.
When they spot one, they take action, and eliminate
the intruder. In lupus, for some reason and we don't
know why, the immune system loses its ability to tell
the difference between a foreign intruder and a person's
own normal tissues and cells. So, in essence, the "Security
Guards" make a mistake, and they mistakenly identify
the person's own normal cells as foreign (antigens),
and then take action to eliminate them. Part of their
response is to bring antibodies to the site that then
attach to antigens (anything that the immune system
recognizes as non-self or foreign) and form immune complexes.
These immune complexes help to set in motion a series
of events that result in inflammation at the site. These
immune complexes may travel through the circulation
(blood) and lodge in distant tissues and cause inflammation
there.
Where did the name come from?
Lupus is the Latin word for wolf. The term has been
associated with the disease since the 10th century,
though the reasons are unclear. Erythematosus means
redness. It is speculated that the name was given to
describe the skin lesions (sores), which typically are
red and perhaps at that time in history were thought
to resemble the bite of a wolf. Today we know that not
everyone with lupus has rashes or skin lesions, and
those who do would not say their rashes look anything
like a wolf bite.
Who gets lupus?
Lupus can occur at any age, and in either sex. Nine
out of ten people with lupus are women. During the childbearing
years (ages 15-44) lupus strikes women 10-15 times more
frequently than men.
People of all races can have lupus; however, African
American women have a three times higher incidence (number
of new cases) and mortality than Caucasian women. They
tend to develop the disease at a younger age and to
develop more serious complications. Lupus is also more
common in women of Hispanic, Asian, and Native American
descent.
The National Institute of Arthritis and Musculoskeletal
and Skin Diseases (NIAMS) has developed a strategic
plan for reducing health disparities. Lupus is included
as an area of research focus. Further information on
disparities in lupus and the strategic plan is available
at: http://www.niams.nih.gov/an/stratplan/stratplan.htm
What are the symptoms of lupus? Symptoms of lupus
vary widely depending on the individual case and the
form of lupus present. Most people with lupus do not
experience all of these symptoms. The list only serves
to alert people to clues that might indicate the presence
of lupus in an undiagnosed person.
- Achy or swollen joints
- Persistent fever over 100 degrees
- Prolonged, extreme fatigue
- Skin rashes, including a butterfly shaped rash
across the cheeks and nose
- Pain in the chest on deep breathing
- Anemia
- Excessive protein in the urine
- Sensitivity to sun or ultraviolet light
- Hair loss
- Abnormal blood clotting problems
- Fingers turning white and/or blue in the cold
- Seizures
- Mouth or nose ulcers lasting longer than two weeks
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2. Are there different kinds of lupus?
There are four forms of lupus including:
Cutaneous lupus erythematosus affects the skin. There
are many different types of cutaneous lupus including:
- Chronic cutaneous LE (CCLE) which is sometimes
called discoid.
- Subacute cutaneous LE (SCLE), and
- Acute cutaneous LE (ACLE).
See brochure: Skin
Disease in Lupus
Systemic lupus erythematosus (SLE) attacks
multiple systems in the body which may include: the
skin, joints, lungs, blood, blood vessels, heart, kidneys,
liver, brain and the nervous system.
See Facts & Overview: What is
Lupus?
Drug-induced lupus may develop after taking
certain prescription medications. Symptoms generally
disappear, within weeks to months, after the drug is
discontinued.
See brochure: Drug-Induced
Lupus Erythematosus
Neonatal lupus, a fourth type, is a rare condition.
It is not the same thing as SLE. See FAQ
39 - Research.
Resource: "Lupus and Pregnancy" by T. Flint Porter,
MD, MPH and D. Ware Branch, MD. Lupus News, Vol. 20,
No. 5, Winter 2000.
Reference: see Facts & Overview, Types
of Lupus
Lupus in Overlap
The majority of people with lupus have lupus alone.
Between five and thirty percent of people with lupus
report having overlap symptoms characteristic of one
or more connective tissue diseases. There are several
well-recognized overlaps that may affect people with
lupus including: lupus and rheumatoid arthritis (RA),
lupus and myositis, lupus and systemic sclerosis (SSc
or scleroderma), lupus and Sjogren's syndrome (SS).
Reference: see brochure, Lupus
In 'Overlap' With Other Connective Tissue Diseases
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3. Is lupus contagious?
 Is lupus a fatal
disease?
Lupus is not a universally fatal disease. In fact, today
with close follow-up and treatment, 80-90% of the people
with lupus can expect to live a normal life span. Lupus
does vary in intensity and degree, however, and there
are people who have a mild case, there are those who
have a moderate case and there are some who have a severe
case of lupus, which tends to be more difficult to treat
and bring under control. For people who have a severe
flare-up, there is a greater chance that their lupus
may be life-threatening. We know that some people do
die of this disease and because of that we have a tremendous
amount of respect for the potential of this disease.
However, the majority of people living with lupus today
can expect to live a normal lifespan.
People frequently read in the literature that, 80-90%
of people with lupus live for more than ten years. Unfortunately,
this is often misinterpreted as- people with lupus live
for only ten years. Let us clarify this.
It is important to understand that the "10 years" does
not represent the number of years the person will live,
but rather the number of years involved in the study.
The studies followed patients with lupus from the time
of diagnosis for a period of ten years. At the end of
this research period they were able to conclude that
80-90% of the people enrolled were still alive. What
this study did not look at is what happened in year
11, 12, 15, 20 and so on. We know there are many people
who have been living with lupus for 15, 19, 25, 30 and
40 years. This is not a disease that is universally
fatal to all. The majority of people with lupus today
can expect to live a normal lifespan.

Overwhelming infection and kidney failure are the two
most common causes of death in people with lupus.
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5. Lupus and cancer
Is lupus a form of cancer?
No, lupus is not a form of cancer. It is an autoimmune
disease.
Are people with lupus more likely to develop cancers?
People with lupus are no more likely to develop cancer
than are people in the general population. However,
people who have received certain chemotherapy drugs
do carry the added risk of developing cancer sometime
later in life.
Are there any special considerations regarding treatment
of cancer in people with lupus? Cancer can be treated
in many ways; with surgery, radiation and/or chemotherapy.
All people with lupus who have surgery for cancer, should
be followed closely by their personal physician and/or
the rheumatologist to evaluate the activity of their
lupus throughout the course. For patients receiving
steroid therapy and surgical procedures, their steroid
dosage will have to be adjusted during the time just
shortly before surgery and then tapered slowly over
time after surgery. If a person is scheduled for surgery
and they take non-steroidal anti-inflammatory drugs
or aspirin, any of which may effect their clotting time,
these medications will need to be stopped prior to surgery
in order to minimize bleeding.
Chemotherapy usually doesn't present any particular
problems and can in turn treat active lupus.
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6. Is lupus like AIDS?
No. In AIDS (Acquired Immune Deficiency Syndrome) the
immune system is under active; it is deficient. In lupus
the immune system is overactive, producing large quantities
of antibodies. AIDS is contagious but lupus is not.
 Lupus anticoagulant
I was just diagnosed with the lupus anticoagulant.
Does this mean I have systemic lupus?
The lupus anticoagulant is classified as a type of antiphospholipid
antibody that was first detected in people with lupus.
It was later learned that many people who do not have
lupus, also produce these antibodies. In fact, according
to most studies, greater than 50% of the people who
have antiphospolipid antibodies, DO NOT have lupus.
So, just because a person has the lupus anticoagulant
antibodies does not necessarily mean that they have
or will develop systemic lupus.
There is a syndrome called the "Primary" Antiphospholipid
Syndrome (PAPS). This term is used to describe people
who do not have any signs or symptoms of SLE but produce
antiphospholipid antibodies such as the lupus anticoagulant
and/or anti-cardiolipin antibodies and experience problems
with blood clots, miscarriages, or thrombocytopenia
(low platelets). People with PAPS do not have lupus.
References: see brochures, Blood
Disorders in Lupus, and Antiphospholipid
Antibodies and Systemic Lupus Erythematosus
Is it possible to have antiphospholipid antibodies
and not have systemic lupus?
Yes. Although these antibodies were first discovered
in people who had lupus, it was later learned there
are many people who produce these antibodies who do
not have systemic lupus.
References: see brochures, Blood
Disorders in Lupus, and Antiphospholipid
Antibodies and Systemic Lupus Erythematosus
Is it possible to have antiphospholipid antibodies and
not have symptoms related to them, i.e. blood clots,
miscarriages or low platelets?
Yes. In fact, most people with these antibodies DO NOT
and will not have symptoms related to them.
Antiphospholipid Antibody Syndrome Foundation website
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8. Lupus and multiple
sclerosis
I was diagnosed with MS 3 years ago and now my doctor
thinks I may have lupus. Is there a connection between
MS and lupus?
Multiple Sclerosis and lupus are both autoimmune diseases.
They are diagnosed and treated in very different ways.
There is no direct connection between the two, however,
lupus, known as a great imposter, can sometimes mimic
or imitate the symptoms of MS.
Reference: see brochure, Systemic
Lupus and the Nervous System
My MRI from 3 years ago showed plaques. Is there
anything on the MRI of people with lupus of the nervous
system that is diagnostic for CNS lupus?
Diagnosis of CNS lupus is difficult as there is not
one specific diagnostic test to detect nervous system
involvement in lupus. The abnormalities seen on the
MRI scans are not specific for systemic lupus. In other
words, they could be due to a number of things. The
findings on these specialized tests and sometimes other
tests such as a brain wave test (electroencephalogram,
EEG) and a spinal tap have to be considered along with
clinical and laboratory findings in establishing a diagnosis
of CNS lupus. Reference: see brochure, Systemic
Lupus and the Nervous System
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9. My child has lupus.
What is the prognosis?
The prognosis for children and adolescents with systemic
lupus has improved dramatically over the past twenty
years. With modern therapy, children do nearly as well
as adults.
References: see brochure, Childhood
Lupus and Contact
the LFA for articles on childhood lupus.
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LUPUS OF THE SKIN
10. What are the symptoms of cutaneous
lupus?
The symptoms of cutaneous lupus may include a variety
of different looking skin rashes, photosensitivity (where
exposure to ultra-violet light triggers a rash), and
sometimes ulcers on the inside of the nose or mouth.
Reference: see brochure, Skin
Disease and Lupus
What do the rashes look like?
There are a variety of ways that cutaneous lupus rashes
can appear. The distinctive rash is called the "butterfly
rash," which is a rash that extends across the cheeks
of the face and the bridge of the nose. It can be flat
or raised; it can be bright red or it can be just a
mild blushing, light pink coloration to the skin. It
appears on the face in a pattern that looks like a butterfly;
the wings are beneath both eyes and the body of the
butterfly covers the bridge of the nose. Here is one
example of what a butterfly
rash may look like. (Photo source:
Dept. of Dermatology, University of Iowa)
Another classic rash found in cutaneous lupus is the
discoid rash. This rash is coin-shaped or oval
in shape, like a disk and it is seen on areas of the
skin that are exposed to sunlight. Discoid lesions (sores)
tend to be red and raised and become scaly. When they
heal they can leave behind a scar. These rashes can
also result in a change in coloring of the skin, making
the area around the lesion either lighter or darker
in color. These discoid lesions may appear on the scalp;
on the face in a butterfly distribution; or, as mentioned
earlier, in areas where the skin receives sun exposure,
especially, for example, the V of the neck. Discoid
lupus erythematosus (LE) lesions are usually painless
and typically do not itch. Here is one example of what
a discoid
rash may look like. (Photo source:
Dermatology Information System, Dermis.net)
Chronic cutaneous lupus may also appear in different
forms including:
- verrucous (wart-like) discoid LE
- lupus tumidus - elevated areas of red skin with
no scale or scarring
- lupus profundus - discoid skin lesions in conjunction
with panniculitis
- palmar-plantar erosive discoid LE - discoid lesions
on the hands and feet
Another type of lupus skin rash is classified as the subacute
cutaneous lesions. These are lesions characterized
by redness. They are also coin-shaped, very photosensitive
and they get worse when exposed to ultra-violet light.
These are lesions that do not leave behind scars, and
can appear over large areas of the body. People who have
subacute cutaneous lupus erythematosus (SCLE-a subset
of cutaneous lupus) may experience systemic symptoms such
as:
- muscle and joint pain,
- fever and
- general discomfort.
Serious kidney or nervous system problems are rare.
These are just a few examples of what cutaneous lupus
rashes may look like. Because the appearance of skin
rashes in lupus can be quite variable, it can be difficult
to diagnose just by looking at the lesion, and therefore
other tests may be necessary.
Reference: "The Skin In Lupus," by Richard D. Sontheimer,
M.D. & Thomas T. Provost, M.D. Lupus News, Volume 18,
Number 2, Spring 1998.
How is cutaneous lupus diagnosed?
Cutaneous lupus, because of the great deal of variability
in the way that the skin rashes may appear, can be quite
difficult to diagnose. However, a skin biopsy may be
performed and this may be diagnostic.
What kind of Doctor specializes in cutaneous lupus?
A dermatologist specializes in diseases of the skin,
hair and nails. Cutaneous lupus is one of hundreds of
diseases that involve these areas.
How is cutaneous lupus treated?
Treatment of cutaneous lupus may include corticosteroid
creams or ointments applied to the rash or lesions.
If the lesion does not respond to cream or ointment,
the doctor may prescribe injections of corticosteroids
directly into the lesion. If a person has particularly
widespread lesions, oral corticosteroid medications
may be prescribed or the doctor may prescribe anti-malarial
medications such as Plaquenil (hydroxychloroquine).
In addition to these medications, sunscreens are an
important part of the prevention of photosensitivity
(where skin exposed to ultra-violet light reacts by
developing a rash) reactions that may occur with cutaneous
lupus lesions.
Reference: see brochure: Skin
Disease in Lupus.
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11. How is cutaneous lupus different
from systemic lupus?
Cutaneous lupus is confined to the skin, whereas systemic
lupus may involve not only the skin but any of the other
organ systems in the body.
Can cutaneous lupus turn into systemic lupus?
In approximately 10% of the cases of cutaneous lupus,
it evolves and develops into systemic lupus. However,
this can't be predicted or prevented from happening.
References: see brochures, Skin
Disease in Lupus, and What
is Lupus?
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12. I have hair loss due to several
scars on my scalp. All are about the size of silver
dollars. Is there anything to help this kind of hair
loss?
If biopsy results indicate advanced scarring on the
scalp, then there is little chance of bringing back
significant amounts of hair. If, on the other hand,
scarring is not prevalent, then treatment with corticosteroid
and/or antimalarial drugs may be successful in getting
the hair to return. When the disease is inactive, and
scarring is not present hair usually grows back.
Reference: see brochure: Skin
Disease in Lupus
Will the drugs used to treat baldness help the hair
loss due to lupus?
Suppressing the disease with medication helps hair to
re-grow.
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13. Is there anything that can
be done to cover the lesions (sores) that show-up on
my face?
Yes. There are make-up products available commercially
which may be helpful in this situation. Fallene's Total
BlockŪ SPF 60 Foundation can be used as a make-up as
well as a sun block.
References:
Covermark Cosmetics
157 Veterans Drive, Suite D
Northvale, NJ 07647
1-800-524-1120
www.covermarkusa.com/
Total Block
Fallene, Ltd.
677 West De Kalb Pike
King of Prussia, PA 19406
1-800-332-5536
http://www.totalblock.com/
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14. Can lupus cause either hives
or a sensation of burning in the skin?
Lupus may cause hives. Itching can also occur but this
is not a common finding. The sensation of itching is
due to irritation of nerve fibers in the skin. If the
irritation is more intense, it may cause a burning sensation.
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15. What is photosensitivity and
what are photosensitivity reactions?
Photosensitivity is sensitivity to the UV (ultra-violet)
rays from the sunlight and other UV light sources. Photosensitivity
reactions typically include a rash, but may also trigger
fever, fatigue, joint pain and other symptoms of SLE.
In some cases, sun exposure has resulted in the onset
of kidney disease. Reference: see brochure: Skin
Disease in Lupus
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DRUG-INDUCED LUPUS
16. What is the difference between
drug-induced lupus (DIL) and systemic lupus?
Systemic lupus is irreversible, whereas drug-induced
lupus generally is reversible when the drug is discontinued.
The symptoms of drug-induced lupus generally DO NOT
include kidney involvement or central nervous system
involvement
What drugs are most commonly associated with DIL?
There is just a short list of medications for which
there is DEFINITE PROOF of an association with drug-induced
lupus. The list includes 5 medications.
Procainamide (pro-can-a-mide) brand names Procan
or Pronestyl used for heart rhythm abnormalities
Hydralazine (hi-dral-a-zine) brand name Apresoline
or Apresazide used for high blood pressure
Isoniazid (i-so-nye-a-zid) brand name INH used
for tuberculosis
Quinidine (quin-i-dean) used for heart rhythm
abnormalities
Phenytoin, brand name Dilantin used for convulsive
disorders (seizures).
Are there other drugs that might cause DIL?
The overwhelming majority of cases of DIL are due to
one of the 5 drugs mentioned earlier. There are other
drugs, which might POSSIBLY be associated, but there
is not yet definite proof of an association between
them and drug-induced lupus. Check with your doctor
to see if you are on any medication that might possibly
explain your symptoms.
Should people diagnosed with SLE or Cutaneous lupus
avoid taking the drugs associated with drug-induced
Lupus?
Most of the drugs associated with DIL can be safely
used in people with SLE or cutaneous lupus if there
are no suitable alternatives.
How soon after taking the drug do the symptoms appear?
Drug-induced lupus requires months to years of frequent
exposure to a drug before symptoms appear.
How soon after discontinuing the drug will the symptoms
go away?
It varies from days, to weeks, to months. Usually symptoms
fade after six months. The ANA may remain positive for
years.
Reference: see brochure: Drug-Induced
Lupus Erythematosus
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CAUSE
17. What causes lupus?
The exact cause of lupus is unknown. It is likely to
be due to a combination of factors. For example, a person's
genetic make-up and exposure to certain unknown trigger
factors may provide the right environment in which lupus
can develop.
Reference: see Facts & Overview, What
is Lupus?
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18. Is it hereditary?
We suspect (but do not have scientific proof) that people
inherit something from their parents that predisposes
them to develop lupus. They are not necessarily pre-destined
to develop lupus, but they may be more susceptible.
At the present time, there are no genetic tests to determine
who is susceptible and who is not.
Reference: see Facts & Overview, What
is Lupus?
Where is genetic research being done?
Several researchers are doing Linkage Studies to evaluate
families in which more than one member has lupus. They
hope to be able to identify a gene or genes that are
responsible for lupus. Undoubtedly the resources of
all of these groups will eventually be pooled, but there
is much to be gained from the current phase of multiple
independent efforts. Participation in multiple studies
is encouraged. More are listed in the Clinical Trials
section. If you are interested in participating or would
like information, visit the LFA
Research Programs page and click on "Clinical
Trials," and/or contact any of the following:
Oklahoma Medical Research Foundation
Lupus Multiplex Registry & Repository
825 NE 13th Street, MS #5
Oklahoma City, OK 73104
Call Carisa Cooney, Kurt Downing, Jessica Lombard, or
another Recruiter at 1-888-655-8787 (1-888-OK-LUPUS)
or<PHONE_NUMBER>
http://cpu1.omrf.ouhsc.edu/lupus/
National Native American Lupus Project
This project seeks to find members of Tribal Communities
willing to participate in the search for the genetic
causes of systemic lupus. Researchers are speaking
with leaders and members of different tribal groups
to exchange information and ideas about the Project,
determine how best to conduct the research with specific
groups, and establish complementary goals.
If you are Native American and have family members
who may have lupus, or know of a Native American family
with lupus, please call the NNALP at the Oklahoma
Medical Research Foundation toll free at 1-888-655-8787.
African-American Families with Lupus:
Scientists at the Oklahoma Medical Research Foundation
are seeking African-American families to participate
in studies of systemic lupus erythematosus call the
Recruiter at Oklahoma Medical Research Foundation
1-888-65 LUPUS (1-888-655-8787)
Seeking Lupus Families
Families with at least two members who are related
by blood and have been diagnosed with lupus should
call the Recruiter at the Oklahoma Medical Research
Foundation at: 1-888-65 LUPUS (1-888-655-8787)
Families with three or more affected members (siblings,
cousins, aunts, uncles, grandparents, etc.) would
be exceptionally helpful.
Genetics of SLE - Family Study
Division of Rheumatology
University of Minnesota
14-154 Moos Tower
515 E. Delaware St.
Minneapolis, MN 55455
Tel: 1-800-51-LUPUS (1-800-515-8787)
Dr. Jane E. Salmon
Hospital for Special Surgery
Weill Medical College of Cornell University
New York, NY
Tel:<PHONE_NUMBER>
Betty P. Tsao, Ph.D.
Division of Rheumatology
Rehabilitation Center 32-59
1000 Veteran Avenue
UCLA School of Medicine
Los Angeles, CA 90095-1670
Tel:1-800-273-0730
The following investigators are participating in the
multi-center Genetics PROFILE study and are interested
in people with lupus and their biological parents who
live in the geographic areas of Birmingham, Alabama;
Baltimore, Maryland; Chicago, Illinois and Houston,
Texas.
Dr. Graciela Alarcon
University of Alabama at Birmingham
Birmingham, AL
(205) 934-2799
Dr. Robert Kimberly
University of Alabama at Birmingham
Birmingham, AL
(205) 934-5306
Dr. Michelle Petri
Johns Hopkins University Hospital
Baltimore, MD
(410) 614-1839
Dr. Rosalind Ramsey-Goldman
Northwestern University
Chicago, IL
(312) 503-8197
Dr. John Reveille
University of Texas-Houston
Houston, TX
(713) 500-6900
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19. Can I have my children tested?
Testing isn't advisable in individuals who do not have
symptoms.
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20. What can trigger lupus?
It is believed that certain things may trigger the onset
of lupus or cause lupus to flare. Trigger factors include:
- Ultra-violet (UV) light
- Certain prescription drugs
- Infection
- Certain antibiotics
- Hormones
Although there is no scientific evidence, it is possible
that extreme stress may play a role in triggering lupus.
Reference: see Facts & Overview, What
is Lupus?
Is lupus stress related?
We do not know for certain. There are many anecdotal
reports (personal accounts) of lupus flaring during
or after a stressful time, but this question requires
further scientific study.
Are flares related to hormones?
We do not know for sure. There are many anecdotal reports
(personal accounts) of lupus flaring with pregnancy,
the menstrual cycle, birth control pills, and hormone
replacement therapy. We suspect that hormones play a
role, but we don't know precisely what the role is.
Lupus has a 9:1 female to male ratio so it is likely
that hormones play a role, perhaps by influencing the
immune system. Also, we know that female hormones have
a definite effect on lupus mice used in research.
Are there any medications people with lupus should
avoid?
There are no absolute contraindications to needed and
appropriate medications for a person with systemic lupus.
Your doctor should watch for allergic reactions to medications,
and watch for any connection between flares and estrogen
or oral contraceptives.
People with lupus should be especially careful if they
are prescribed sulfa antibiotics. These medications
(Bactrim, Gantrisin, Septra) are often prescribed for
urinary tract infections and may cause an increase in
sun sensitivity and occasionally lower blood counts
resulting in disease flares. There are also sulfa diuretics
(water pills) such as Dyazide and diabetic drugs containing
sulfa such as Aldactone.
Does lupus occur more often in certain geographical
areas?
No.
Is lupus related to pollution or toxic chemicals?
We do not know. The cause of lupus, and many other autoimmune
diseases, remains unknown. The respective roles of genetic
and environmental factors in triggering lupus remain
to be determined. The National Institutes of Health
(NIH), the principal biomedical research agency of the
United States Government established the National Institute
of Environmental Health Sciences (NIEHS) to study issues
related to environmental health. A meeting in September
of 1998 at Research Triangle Institute (RTI) in Durham,
NC organized by NIEHS, looked at autoimmunity and the
environment and specifically lupus. A review of the
discussion was published in the medical journal, Arthritis
and Rheumatism (1998 Oct; 41(10): 1714-24) in an article
titled: "Hormonal, Environmental, and Infectious Risk
Factors for Developing Systemic Lupus Erythematosus"
by Cooper GS, Dooley MA, Treadwell EL, St Clair EW,
Parks CG, Gilkeson GS.
The National Institute of Environmental Health Sciences
(NIEHS) website: http://www.niehs.nih.gov/
Can something in your diet cause lupus?
We do not believe so.
Resource:
"Eating Healthy When You Have Lupus," by Kristine Napier,
MPH, RD. Lupus News, Vol. 15, Number 1, 1995.
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21. Silicone breast implants
I have silicone breast implants and am being tested
for lupus. Is there any connection between silicone
implants and lupus?
There has been a great deal of interest in this issue
and to date there have been numerous well controlled
research studies since 1992 that have looked at this
question. However, none has shown a clear association
between silicone breast implants and the development
of lupus disease.
In March 1998, the National Institutes of Health requested
that the Institute of Medicine (IOM) of the National
Academy of Sciences (NAS) provide an independent, unbiased
review of past and ongoing research on the health effects
of silicone breast implants. To respond to this request,
the IOM established a committee of 12 experts in relevant
scientific and clinical areas to assess the scientific
information on silicone breast implants and the relationship,
if any, to various health conditions.
A one-day scientific workshop was convened on July 22,
1998 in Washington, DC-testimony included epidemiology
and observational studies, immunology reports, company
data from Mentor Corp. and Dow Corning Corp., and surgery,
pathology, and radiology information. A public hearing
followed on July 24, to gather information and views
from a wide range of lay, advocacy, industry, and public
policy groups.
The following year, in June of 1999, the Institute of
Medicine's final report concurred with the scientific
evidence that had accumulated over the previous 7 years
which does not support the notion that silicone breast
implants cause lupus. At the present time, as far as
we know, there is no scientific evidence to indicate
a cause-effect relationship between silicone breast
implants and lupus.
If I have my implants removed, will my lupus symptoms
improve, will the lupus go away? We don't know. There
have been reports of women who had silicone breast implants
removed and their symptoms improved. On the other hand,
there have been cases where symptoms have not improved
after removal.
Resources:
To receive the most recent information on breast implants
contact the
Food and Drug Administration (FDA)
Breast Implant Information Line
1-800-532-4440 or visit their web site at: http://www.fda.gov/cdrh/breastimplants/
The final report made by the Institute of Medicine is
available online at:
http://www.nap.edu/books/0309065321/html/
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22. Is there any truth to the
claims being circulated on the Internet that lupus is
caused by the artificial sweetener, aspartame?
We are aware there is an email message circulating on
the Internet warning individuals with lupus about dangers
associated with using the artificial sweetener aspartame.
The Lupus Foundation of America consulted with the chair
of the LFA Medical Council, Evelyn Hess, MD, MACP, MACR.
Dr. Hess is one of the nation's leading researchers
in the field of lupus specializing in environmental
influences. According to Dr. Hess, there is, as of now,
no specific proof of an association with aspartame as
a cause or worsening of SLE.
People with lupus should always consult with their physician
before making any changes in their medical treatment,
diet, exercise or other routine based on information
received via the Internet or other sources lacking known
credentials.
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DIAGNOSIS
23. Is there a test for systemic
lupus?
There is not a single diagnostic test for systemic lupus.
Reference: see brochure, Laboratory
Tests Used in the Diagnosis of Lupus
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24. Why is systemic lupus so difficult
to diagnose?
It is difficult for a number of reasons:
- Systemic lupus is a multi-system disease, and before
a multi-system disease can be diagnosed, there have
to be symptoms in many parts of the body and lab work
that supports the presence of a multi-system disease.
- Systemic lupus is also difficult to diagnose because
it is a disease that does not typically develop rapidly,
but rather develops slowly and evolves over time.
Symptoms come and go and it generally takes time to
gradually accumulate enough symptoms to indicate that
a multi-system disease is present. The
- Systemic lupus is known as a Great Imitator because
it mimics so many other diseases and conditions.
- Systemic lupus is difficult to diagnose because
there is no single diagnostic test for lupus. In fact,
many people may have positive lupus tests-particularly
the anti-nuclear antibody test-and yet NOT have the
disease.
How is systemic lupus diagnosed?
Physicians have to gather information from a variety
of sources: past medical history, lab tests and current
symptoms. They use a list of 11 criteria to help diagnose
SLE. A person needs to satisfy at least 4 out of the
11 criteria before the diagnosis can be pinpointed (see
list in What is Lupus? brochure). Some criteria, such
as a biopsy diagnosis of kidney lupus, can carry more
weight.
Of the 11 criteria, 7 relate to symptoms, and 4 have
to do with lab tests. The ANA test is used as a screening
test for systemic lupus. We know that 95 % of people
with SLE have a positive ANA. Therefore, if a person
has many symptoms of systemic lupus and their ANA test
is negative, that's generally regarded as pretty good
evidence against lupus being the explanation for the
symptoms they are having.
If on the other hand, the ANA comes back positive, that
IS NOT proof of lupus. The positive ANA is only an indicator;
it is not diagnostic. A positive ANA can be found in
a number of illnesses and conditions including:
Rheumatoid arthritis
Sjogren's (show-grens) syndrome
Scleroderma (sklare-a-derm-a)
Infectious diseases such as:
Mononucleosis
Malaria
Subacute bacterial endocarditis (SBE)
Autoimmune diseases including:
Autoimmune thyroid disease
Autoimmune liver disease
Certain medications can also cause a positive ANA.
About 20% of the general population when tested will
have a positive ANA and not have any of the above mentioned
illnesses. The ANA is only a test and like a high cholesterol
value, a positive ANA doesn't necessarily equate having
a disease.
So, a positive ANA, by itself, is not diagnostic of
any one particular disease and may be present in people
who have no illness. Although it is often referred to
as "a lupus test," it is not like a pregnancy test where
a positive result can mean only one thing. The ANA is
only an indicator, which points in several possible
directions. A positive ANA satisfies only one criterion.
A person would need to satisfy at least 3 additional
criteria.
Reference: see brochure, Laboratory
Tests Used in the Diagnosis of Lupus
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25. Confusion About Diagnosis
I've seen a list of symptoms of lupus and I have
just about every one. The doctor I went to doesn't think
I have lupus, but he doesn't seem to know too much about
it. How can I be sure I do or do not have lupus?
Lupus is a very difficult disease to diagnose. Physicians
use a list of 11 criteria to assist in the diagnosis.
The criteria consist of symptoms and lab tests, which
tend to be specific to SLE. The list of 11 criteria
is not to be confused with lists of common symptoms
of systemic lupus, such as: fatigue, fever, weight loss,
hair loss, nausea, Raynaud's phenomenon. These symptoms,
could be due to numerous illnesses or conditions, and,
therefore, are too vague to be included as diagnostic
criteria.
If a person has many of the symptoms of systemic lupus,
the physician may suspect lupus is developing, and evaluate
the patient to see if any criteria are met. If fewer
than 4 criteria are satisfied, there is insufficient
evidence to diagnose systemic lupus. A rheumatologist
or a clinical immunologist may be consulted if you are
looking for a specialist who has the expertise to diagnose
and treat lupus.
Reference: see Facts & Overview, What
is Lupus?
I am afraid I might have lupus and my doctor is going
to miss something and end up diagnosing me with lupus
too late. If I have it, I want to be diagnosed as early
as possible. How can I make sure I am diagnosed earlier
rather than later?
Because lupus tends to develop slowly and evolve gradually
over time, awaiting a diagnosis can be like waiting
for a Polaroid picture to develop. If you are seen by
a doctor at a point in time when only one or two criteria
are satisfied, it is like looking at a picture that
is only one-quarter or half-way developed. No one looking
at that picture can accurately identify what it is.
Nor can they predict if it will develop at all or what
it will develop into, or how long it will be before
it is developed to the point where it's identifiable.
Just as there is no good way to speed-up the development
of a Polaroid, there is no way to hurry-up the diagnosis
of lupus.
The length of time it takes before lupus can be diagnosed
is highly variable; it may take weeks, months or years;
three years is not an uncommon length of time for many
people to have symptoms before being diagnosed. In some
cases, it can take as long as 10 years before enough
evidence has accumulated to indicate that it is lupus.
However, generally a doctor has a pretty good idea,
though s/he may not be certain, that a person does or
does not have SLE. The important thing is to learn the
signs and symptoms of lupus and if you develop something
new, let your doctor know so s/he can determine if you
have yet satisfied enough criteria to be diagnosed.
My doctor suspects I have lupus, but hasn't diagnosed
me with it yet. I have a lot of joint pain in my hands
and knees. Can anything be prescribed to give me some
relief, or do I have to wait until I have a definite
diagnosis before they can treat me?
Sometimes, a trial of lupus medications is helpful,
so discuss this with your doctor.
My Doctor said my lupus test came back "borderline
positive." What does this mean?
The screening test for lupus is called the ANA (antinuclear
antibody). All lab tests have normal values. If a test
result comes back and the value is at the upper limit
of normal, this is often referred to as being on the
border or borderline. These results are often very difficult
to interpret; and the assessment of its importance is
dependent on meeting other criterion. It is likely that
a borderline positive ANA assumes more importance if
other criteria are also present.
I was told my ANA was positive, but I don't have
lupus. My Doctor thinks I have a connective tissue disease.
What does this mean?
Connective tissue includes joints, tendons, cartilage,
collagen, muscles and skin. There are a number of connective
tissue diseases; rheumatoid arthritis, scleroderma,
Sjogren's syndrome, Raynaud's phenomenon, vasculitis,
polymyositis and dermatomyositis. It is not uncommon
for a person to have symptoms that indicate a connective
tissue disease, but not enough symptoms to clearly specify
a particular disease.
References:
Brochures: Lupus
in Overlap with other Connective Tissue Diseases,
Lupus: Basics for
Better Living
Articles: "My
ANA is Positive...What Does That Mean?"
I was told my ANA was negative, and I don't have
lupus. Is it possible to have lupus with a negative
ANA?
Approximately 95% of people with systemic lupus
have a positive ANA. Only a small percentage have a
negative ANA, and many of those have other antibodies
detected in their blood (antiphospholipid antibodies,
anti-Ro, anti-SSA). Sometimes the ANA will convert from
positive to negative following administration of steroids,
cytotoxic medications or uremia (kidney failure).
What kind of Doctor can diagnose systemic lupus?
If multiple criteria are present simultaneously, the
diagnosis may be made by any physician (Family Practitioner,
Internist, Pediatrician). If however, as is often the
case, symptoms develop gradually over time, the diagnosis
may not be as obvious and consultation with a rheumatologist
may be needed.
My doctor suspects that I may be developing lupus,
but I don't satisfy enough criteria to be diagnosed.
Is there anything I can do to slow its development or
prevent it from occurring?
If you are indeed developing lupus, there is no known
way of arresting it. You can, however, be an active
participant in your well being by:
- learning as much as you can about lupus so if you
develop further symptoms, you will recognize them
and notify your doctor,
- eating a well balanced diet,
- managing stress more effectively, and
- following your doctor's advice.
I was told my ANA was positive and I have a lot
of pain, but my doctor thinks I have fibromyalgia and
not lupus. What does this mean?
Patients with positive ANA's and muscle and joint pain
do not necessarily have lupus. Fibromyalgia, which is
also common in women, sometimes explains the widespread
pain.
Resources:
Fibromyalgia Network,
P.O. Box 31750
Tucson, AZ 85751-1750,
1-800-853-2929 or<PHONE_NUMBER>
http://www.fmnetnews.com/
The National Library of Medicine's MEDLINE
Plus: Health Information-Fibromyalgia
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LIVING WITH LUPUS
26. I was diagnosed with systemic
lupus. Are there any do's or don'ts with regard to:
Diet - There is no such thing as a lupus diet.
People with lupus should consider following a diet such
as the American Heart Association's diet or the American
Cancer Society diet. These are both well-researched
diets that have common components, they are low in fat,
low in sodium, high in fiber, low in refined sugars.
They are also balanced and include appropriate amounts
of all the different food groups. If you find, however,
that certain foods seem to aggravate or consistently
cause a flare-up of your lupus symptoms, you should
certainly avoid eating those foods.
Reference: "Eating Healty When You Have Lupus," by Kristine
Napier, MPH, RD. Lupus News, Vol 15, Number 1, 1995.
Alfalfa sprouts are in the legume family and contain
an amino acid, L-canavanine. It can stimulate the immune
system in people with lupus and increase inflammation.
Other legumes are safe to eat as they have a much lower
concentration of L-canavanine compared to alfalfa sprouts.
Check labels on health food packaging as alfalfa may
also be found as an ingredient in food products. Reference:
see brochure, Lupus:
Basics for Better Living
Vitamins - In general, a multi-vitamin is reasonable,
but excess vitamins can be potentially dangerous and
should be avoided.
Exercise - Exercise is to be encouraged in people
with lupus, particularly during a time when lupus symptoms
are not pronounced. Walking, swimming, bicycling and
other aerobic activities are good. But keep in mind
that you want to exercise in moderation and avoid exercising
to the point of exhaustion. Regular exercise will help
you function better and improve fatigue and your sense
of well being.
Resources:
National Institute of Arthritis and Musculoskeletal
and Skin Diseases: "Patient
Information Sheet #3, Exercise and Lupus"
"Questions
and Answers about Arthritis and Exercise"
American College of Rheumatology:
"A Fact Sheet on Exercise and Arthritis"
Fatigue - When your lupus is active, you very
often will suffer with fatigue. It is important to recognize
this as a signal that your body needs to rest. It is
essential that during a time of flare you get sufficient
rest. This may include naps during the day, modifying
your schedule as well as restructuring your priorities.
Adjusting to fatigue often requires that you learn how
to pace yourself in order to accomplish the things you
want to accomplish throughout a day. Regular aerobic
exercise that achieves enhanced physical conditioning,
usually helps fatigue. Avoid strenuous exercise if you
have fever or other signs of VERY active disease.
Resource: National
Institute of Arthritis Musculoskeletal and Skin Diseases
(NIAMS) "Preventing Fatigue Due to Lupus"
Sleep - Get plenty of it, but keep in mind that
when you are coming out of a flare you do need to gradually
resume your normal activities slowly over a period of
time. This may require naps during the day-a brief cat
nap can be of tremendous help. It's important to get
enough sleep at night and to pace yourself during the
day so you don't exhaust yourself.
Medications - Be sure and take your medications
as prescribed by your doctor. If you develop any side
effects make sure you let your doctor know what they
are. Make it a point to understand what the medication
you take is supposed to do so you will be able to recognize
if it is indeed working. Also, ask how long before you
should see the effects of the medication and if you
find it's not working within the time frame, let your
doctor know.
Work schedule -The type of work schedule someone
with lupus can accommodate is variable. Many people
with lupus are able to work a full-time job, others
find they have to cut back to part-time. Some people
find they are unable to work and some apply for and
receive disability.
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27. Flares
How can I tell if my lupus is active?
When a lupus flare occurs, people will usually notice
a return of the symptoms they experienced previously,
but sometimes they will notice new symptoms. These may
include, but are not limited to:
Fever
Swollen joints
Increase in fatigue
Rashes
Sores or ulcers in the mouth or nose
A temperature over 100 degrees, not due to an infection,
is often a helpful sign in identifying
a flare.
When should I call the Doctor?
You should call the doctor about any change in symptoms
or worsening of your lupus as soon as possible. You
should also be aware that there are certain symptoms
that may require that you see your doctor immediately.
These symptoms or signs include the following:
- Blood in your stool or vomit -you should call
your doctor and let him/her know immediately
- Severe abdominal pain
- Chest pain
- Seizures
- New onset of a fever or if your fever is much
higher than it usually is
- Excess bruising or bleeding anywhere on your
body
- Confusion or mood changes
- A combination of symptoms such as severe headache
with neck stiffness and fever. This combination
could be serious and you need to let your doctor
know immediately.
There are other reasons why you should call your
doctor. For example, if the doctor has put you on
a new medication and you've been taking it as prescribed,
and for the period of time prescribed and your symptoms
are no better or they are worse, you need to let the
doctor know.
How long will a flare last? How long will a remission
last?
There is no way of predicting how long a flare will
last when it comes, nor is there any way of predicting
how long a remission will last when it comes. It is
frequently said about lupus that the only thing that
is predictable about lupus is it's unpredictability.
So we have no way of forecasting how long a flare
will last or how long a remission will last. Sometimes
changes in symptoms or lab tests predict future changes.
I've had lupus for 2 years and haven't had a remission
yet. Is this possible?
Yes. Lupus takes a highly variable course. Some people
will have a course where their lupus flares-up and
then simmers down and goes into remission. On the
other hand, some have a more chronic (long-lasting)
course where they have a chronic state of flare and
have symptoms day-in and day-out.
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28. What can I expect in the
future?
Will I be able to have a family?
Unless there is moderate to severe organ involvement
or if a person must take immunosuppressive/immunomodulating
medications that would place the mother at risk, there
is no absolute reason why a person with lupus should
not get pregnant. You must be aware, however, that
there is an increased risk of disease activity either
during or three to four weeks after pregnancy and,
therefore, all women with lupus who are pregnant must
be closely monitored by an obstetrician who is thoroughly
familiar with high risk pregnancy as well as their
lupus doctor. Statistically, 50% of all lupus pregnancies
are completely normal, 25% will deliver normal babies
prematurely and the remaining 25% will experience
either a miscarriage or a fetal death.
Years ago women with lupus were advised not to have
children. However, today with the advances in diagnosis
and treatment of lupus, unless there is moderate to
severe organ involvement, there is no absolute reason
why a person with lupus should not get pregnant.
Reference: see brochure, Pregnancy
and Lupus
Will I be able to continue working full-time?
Many people who have lupus are able to continue working
full-time. However, since lupus affects people to
varying degrees there is no real way of predicting
what your course of lupus will bring in the future.
Some find they have to cut back to part-time or try
modifications of their work environment or schedule,
some find they have to take a leave of absence for
a period of time, others may find their lupus activity
is such that they are unable to continue with working,
and some may go on disability.
Will I live long enough to see my children grow
up?
The majority of people living with lupus today, in
fact 80-90% of them, can expect to live a normal lifespan.
Reference: see Facts & Overview, What
is Lupus?
Will I become crippled and end up in a wheelchair?
People are frequently concerned that the arthritis
associated with lupus will result in crippling deformities.
Lupus arthritis generally does not cause deformities
of the joints. Occasionally, avascular necrosis of
bone, related to steroids and lupus, may occur and
require total hip or knee replacement surgery.
Reference: see brochure, Joint
and Muscle Pain in Lupus
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29. Is there anything
I can do to alleviate the pain when the pills don't
seem to work and I can't get in to see the doctor
for a few days?
Some people find relief from heat, some people find
relief from cold. Others find that if they can find
a distraction to decrease their awareness of pain,
this is beneficial.
Resources:
see brochure, LUPUS:
Basics for Better Living; "Control Your Pain:
144 Sure-Fire Strategies for Reducing the Pain of
Lupus," by Robert H. Phillips, Ph.D. Available through
the LFA Store.
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30. I have heard
that dental fillings may trigger lupus. Is there anything
to this?
At the present time, we do not have any scientific
data that indicates that dental fillings may act as
a trigger of lupus. In fact, it is highly unlikely
that dental fillings aggravate or cause SLE.
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31. I have heard
that hair dyes may trigger flares in lupus. Does this
mean I should stop dying my hair?
One study indicated an association between the use
of hair dyes and lupus symptoms, but subsequent studies
found no association and no recent evidence has been
reported. The initial study findings are of uncertain
significance and most physicians do not feel that
hair dye is risky for people with lupus.
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32. Can lupus cause
memory problems?
At some point during the course of their lupus, up
to 50% of lupus patients describe feelings of confusion,
fatigue, memory impairment, and difficulty expressing
their thoughts. This collection of symptoms is called
"cognitive dysfunction" and is found in people with
mild to moderately active SLE.
Reference: Systemic
Lupus and the Nervous System
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TREATMENT
33. Is there a cure for lupus?
At the present time there is not a cure for lupus,
but there certainly is effective treatment.
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34. How is lupus
treated?
The majority of symptoms of lupus are due to inflammation
and so the treatment is aimed at reducing that inflammation.
This can be done through a number of different medications.
There are four families of medications used in the
treatment of lupus. They include:
- Nonsteroidal Anti-inflammatory Drugs - drugs such
as ibuprofen (Advil & Motrin), naproxen, (Naprosyn
& Aleve), sulindac (Clinoril), piroxicam (Feldene),
diclofenac (Voltaren) to name a few.
- Corticosteroids - drugs such as prednisone, prednisolone,
medrol, deltasone, cortisone and others.
- Anti-malarials - these have been found to be effective
in treating the joint pain, skin rashes and ulcers
that some people develop on the inside of their nose
or mouth. Plaquenil (hydroxychloroquine) is probably
the most commonly prescribed anti-malarial drug in
the United States. There is no known relationship
between lupus and malaria.
- The fourth family of medications, immunosuppressants
(or immunomodulating) /chemotherapy, is generally
reserved for those individuals who have the most severe
flares of lupus; or to enable the steroid dose to
be reduced. A severe flare is one that affects an
organ to the degree that the function is impaired.
When this happens something has to be done to preserve
the function of the organ and that's when immunosuppressive
or chemotherapy medications are prescribed. These
actually suppress the over activity of the immune
system brought on by the lupus, and help limit the
damage and preserve the function of the involved organ.
(Lupus is NOT a form of cancer).
The majority of people who have lupus are treated with
the first three families of medications, the nonsteroidals,
corticosteroids and the anti-malarial drugs. These may
be used either alone or in combination. Since individuals
respond differently to medications, it may take time before
you are able to determine, through trial & error, which
medication at which dose provides relief of the symptoms
of lupus. Frequently physicians will try one medication
see how it works and if it doesn't work, they may have
to change the dose or switch to another medication.
References: see Brochures:
Medications Used in the Treatment of Lupus
Nonsteroidal Anti-Inflammatory
Drugs (NSAIDs)
Steroids in the Treatment
of Lupus
Anti-Malarials
in the Treatment of Lupus
Immune Suppressants
and Related Drugs Used for Lupus.
I don't want to go on prednisone. Are there any other
treatments available?
In addition to corticosteroids, lupus can be treated with
non-steroidal anti-inflammatory drugs, anti-malarial medications,
and chemotherapy drugs. There can be situations where
steroids are the best choice of therapy and the other
medications are not indicated or are ineffective.
What can I do about the weight gain brought on by the
prednisone?
Increased appetite is well recognized as a side effect
of corticosteroid therapy. Often times, just being aware
that this increase in appetite may occur with the steroid
therapy, is the first step towards managing the potential
weight gain. If you have to go on steroids or if you have
to increase your dosage of steroids, you may want to consider
planning out a healthy diet during the time you're taking
steroids and making sure that you stick to it.  Taking steroids can also increase water weight gain.
You can help to cut down the amount of fluid retention
by reducing your sodium and/or salt intake. This can be
accomplished by avoiding processed or convenience food
whenever possible. If you are going to be eating convenience
or processed foods, check the label and make sure that
no item contains more than 200 mg of sodium per serving.
Or if you are eating a whole frozen dinner, for example,
try and stay between 500 and 700 mg of sodium. If you
can avoid processed meats such as luncheon meats, sausages
or bacon, you'll be reducing your sodium intake and that's
good. If you have a choice among fresh, frozen or canned
vegetables, stay away from the canned and choose fresh
or frozen because they are lower in sodium.
Support groups and commercial weight loss programs
can assist in weight control efforts.
Reference: "Eating Healthy When You Have Lupus," by
Kristine Napier, MPH, RD. Lupus News, Vol 15, Number
1, 1995.
Do you recommend any herbs or vitamins for the treatment
of lupus?
We do not recommend any specific herbs or vitamins.
There is a great deal of interest in herbal medicine
and vitamin therapy. However, this is an area that really
requires further scientific study. There are many anecdotal
reports of people who took a certain vitamin or herb
and felt that it helped improve their lupus. However,
you have to be careful because some herbs have been
shown to contain dangerous contaminants. With vitamin
therapy, you have to be careful of not overdosing.
In general if you are concerned about having adequate
quantities of vitamins in your diet, you can take a
single multi-vitamin per day. Calcium supplements, to
prevent osteoporosis (bone thinning), are a good idea.
Patients who are prescribed methotrexate are often told
to further supplement their diet with folic acid.
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35. Where is the BEST place to
go for diagnosis and treatment of lupus?
There is no one single recognized center of excellence
for the treatment and diagnosis of lupus in the United
States today. The Lupus Foundation of America has no
mechanism by which it can rate either hospitals or physicians.
The general recommendation is to find a physician that
is affiliated with a medical school -a university hospital
for example. These health care institutions may have
faculty on staff who are involved in lupus research,
and are generally the most up-to-date on the latest
advances in diagnosis and treatment of lupus. These
are generally regarded as very good places to go for
the diagnosis and treatment of lupus. Certainly the
health care institutions with established reputations
fit this description.
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ALTERNATIVE MEDICINE
36. Is massage safe for people
with lupus?
Yes. If you find that it helps, then good. If you find
that it is not helpful, then you should avoid it.
The Harvard Health Online, January 2001 issue offers
an article that includes a discussion of the current
research on massage at: Alternative
Medicine: What works.Maybe
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37. Is acupuncture helpful to
people with lupus?
There have been anecdotal reports from people stating
that they received acupuncture and believed they benefited
from it. This is an area of alternative medicine that
requires further controlled scientific studies before
we can say whether or not acupuncture is helpful in
treating the symptoms of lupus. However, there are studies
that show acupuncture can be effective in back pain
and fibromyalgia.
Resources: "Can Acupuncture Help Lupus?" by Clayton
E. Spivey, Licensed Acupuncturist. Lupus News, Vol.
16, Number 3, 1996.
NIH
National Center for Complementary and Alternative Medicine:
Acupuncture Information and Resources Consensus Report
on Acupuncture
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38. Does the Lupus Foundation
have any recommendations regarding alternative and unproven
treatments that are often advertised?
The LFA is frequently asked about alternative therapies
for the treatment of lupus. Although we remain hopeful
that newer more effective therapies will be developed,
we must be cautious regarding products that have not
been approved by the Food and Drug Administration (FDA).
Unsubstantiated Remedies
It is the policy of the Lupus Foundation of America
not to make recommendations concerning medications or
products that have not been approved by the FDA or the
American College of Rheumatology (ACR) for the treatment
of lupus. In addition the ACR does not endorse nor warrant
any commercial product or service. There is a wealth
of information and data available about approved medications
and products which help guide physicians in making recommendations
to their patients. Remedies that have not undergone
the scrutiny of scientific investigation, lack the crucial
information and data necessary to enable physicians
to make sound recommendations regarding substances.
Evaluation of medications/products by the scientific
method is at the present time the best way to prove
effectiveness and safety. We urge people with lupus
to ask the manufacturer/distributor of any product:
what is their proof, other than testimonial, that the
product is safe and effective for lupus? If the product
has not been approved by the FDA, we cannot vouch for
the claims made for the purity, safety, or effectiveness
of these substances. Some products may have unlabeled
substances such as alfalfa or sulfa that may be harmful
to patients with lupus.
The following organizations may have information about
alternative therapies or products.
National Institutes of Health
National Center for Complementary and Alternative Medicine
Phone:<PHONE_NUMBER>
http://nccam.nih.gov/
Food and Drug Administration
Office of Dietary Supplements
Phone:<PHONE_NUMBER>
http://www.fda.gov
United States Pharmacopeia
12601 Twinbrook Parkway
Rockville, MD 20852
Phone:<PHONE_NUMBER>
http://www.usp.org/
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RESEARCH
39. Lupus Research
Is any research being done on lupus?
Yes, there is a good deal of interest in lupus. Research
can be divided into two types: basic or clinical. Much
of the lupus research is considered to be basic, where
scientists attempt to develop or refine theories (concepts,
beliefs, principles) of how the body works and how the
immune system functions. Basic research is conducted
in the laboratory and generally does not involve the
use of human subjects. We are lucky to have animal models
of SLE (mice with lupus) so that research into the cause
of lupus and better treatments can be investigated more
easily.
Clinical research involves the study of humans and how
they act or react to certain factors. It includes applying
or testing theories and evaluating their usefulness
in solving clinical problems.
Each year the American College of Rheumatology publishes
a listing of summaries (abstracts) of research projects.
In a typical year, there are over 200 research abstracts
listed that pertain to lupus. The majority of the studies
are basic research. Published research studies can be
found using the National Library of Medicine's PubMed
web site: http://www.ncbi.nlm.nih.gov/PubMed/
Currently, we are aware of many ongoing clinical studies
involving people with lupus and their families. A list
of studies is available in the Clinical
Trials section of this site.
Clinical research can be divided into two broad areas:
testing of new therapies and research to expand our
understanding of different aspects of lupus. There are
several genetic linkage studies in lupus (see question
18) that will help to identify genes that determine
susceptibility to the disease. We are also aware of
multi-centered clinical trials that are evaluating DHEA,
a male hormone, to see if it can improve clinical outcome
and disease symptoms in women and men with systemic
lupus. There are also clinical trials being conducted
using Toleragens, which are molecules designed
to tolerize or shut-off B cells (antibody producing
white blood cells) that produce Anti-DNA antibodies.
Anti-DNA antibodies are felt to be responsible for causing
many of the symptoms of SLE, especially kidney disease.
It is hoped that suppression of these antibodies will
result in improvement of disease activity and decrease
the need for immunosuppressive therapies. These are
just a few of the many areas of lupus research under
investigation. For more information visit the LFA
Research, Programs and LFA
Funded Projects areas of this site.
Where is lupus being researched?
Lupus research is conducted by both public and private
organizations, companies, universities and colleges,
as well as the federal government; which includes the
National Institutes of Health (NIH), the Department
of Veterans Affairs (VA), the Centers for Disease Control
(CDC), the Food & Drug Administration (FDA), and the
Military. The NIH contains the National Institute for
Arthritis, Musculoskeletal and Skin diseases. This is
commonly referred to as NIAMS, and it is here where
much of the federally funded research related to lupus
takes place.
Where does the NIAMS lupus research take place?
The NIAMS is within the National Institutes of Health
in Bethesda, Maryland and research occurs there, as
well as at other major medical centers around the country.
In April 1994, NIAMS announced the establishment of
the first two Specialized Centers of Research (SCORs)
in systemic lupus erythematosus; the Hospital for Special
Surgery, Cornell Medical Center in New York City, and
the University of North Carolina, in Chapel Hill. A
SCOR is envisioned as a national resource associated
with one or more major medical complexes and dedicated
to working with the NIAMS in furthering the research
effort to translate basic research to clinical application.
Federally funded research at these specialized centers
permits basic and clinical researchers to work together
to focus on one disease.
To learn more about NIAMS initiatives in lupus research
see their Press
Releases:
In addition to the NIAMS, there are several other institutes
involved in lupus research within the National Institutes
of Health (NIH), including
the NIDDK, NIAID
and NCCR.
What do we now know as a result of NIAMS supported research?
A synopsis of progress in lupus research is available
in the booklet: Progress
and Promise - NIAMS 15th Anniversary Booklet
Are there any studies on the use of estrogen in lupus?
In January 1996, NIAMS announced the beginning of the
first clinical trial on the safety of estrogen in lupus
erythematosus. The clinical trial, known as SELENA,
(Safety of Estrogen in Lupus Erythematosus National
Assessment) is being funded by NIAMS, the NIH Office
of Research on Women's Health and the NIH Office of
Research on Minority Health. Several major research
centers in twelve states are collaborating in this randomized
double-blind, placebo-controlled trial to determine:
1. the effects of oral contraceptives on disease activity
and severity in SLE. This will show whether it is safe
for women with SLE to use the Pill.
2. whether the hormone estrogen can be used by postmenopausal
women with Systemic Lupus Erythematosus (SLE). The study
will look at the effects of estrogen replacement therapy
on the activity and severity of SLE.
A list of study sites, contact information, inclusion
and exclusion criteria is available at Clinical
Trials.gov. Use the search term SELENA.
NIAMS Registries for Lupus and Lupus Related Conditions
Lupus Registry and Repository
In early 1996, the NIAMS established the Lupus Registry
and Repository to study people with lupus, and their
families in order to identify genes that determine susceptibility
to the disease. The high prevalence of lupus among relatives
of lupus patients suggests a genetic component for the
disease. However, genetic studies of lupus to date have
been incomplete. The Lupus Registry and Repository is
located at the Oklahoma Medical Research Foundation
in Oklahoma City, OK.
Dr. John Harley directs this extensive project. He and
his associates collect and update clinical, demographic
and laboratory data on all patients with lupus and their
families for the Lupus Registry. Blood, cells, and DNA
from these individuals are stored in the Lupus Repository
for genetic testing.
They are seeking lupus patients who have two or more
family members who have been diagnosed with the disease.
Families who qualify for the study receive a blood sample
collection kit, a consent form and a questionnaire.
A blood sample is collected and completed materials
are sent to Dr. Harley and his associates for evaluation.
Patients or physicians interested in participating should
contact:
Carisa Cooney, Kurt Downing, Jessica Lombard or a Recruiter
Oklahoma Medical Research Foundation
Lupus Multiplex Registry & Repository
825 NE 13th Street, MS #5
Oklahoma City, OK 73104
1-888-655-8787 (1-888-OK-LUPUS)
or<PHONE_NUMBER>
http://omrf.ouhsc.edu/lupus
Neonatal Lupus Registry
Dr. Jill Buyon is the director of the NIAMS/HJD Neonatal
Lupus Registry. The Registry includes identifying and
diagnostic information on mothers and their affected
infants. The purpose of the Registry is to facilitate
access to patients by investigators conducting basic,
clinical or epidemiological research.
Please contact:
Jill P. Buyon, M.D., Director
or Peg Katholi, Coordinator
NIAMS/HJD Neonatal Lupus Registry
Hospital for Joint Diseases
301 East 17th Street, Room 1606
New York, NY 10003
Tel:<PHONE_NUMBER>
Fax:<PHONE_NUMBER>
E-mail<EMAIL_ADDRESS>Antiphospholipid Syndrome Registry
Robert A.S. Roubey, M.D. at the University of North
Carolina, Chapel Hill directs the APS registry scientists
who will collect clinical, demographic and laboratory
information on patients with clinical signs of APS as
well as people who have antibodies but have not yet
developed any clinical signs. Data will be made available
to researchers and medical practitioners concerned with
diagnosis and treatment.
Please contact:
Robert A. S. Roubey, M.D.
University of North Carolina,
Chapel Hill, NC
Tel:<PHONE_NUMBER>
Email<EMAIL_ADDRESS>Fibromyalgia Family Study Registry
Dr. Jane Olson will lead this study of patients in families
with at least two FMS-affected individuals. Families
are eligible for participation in this study if at least
two closely related family members have Fibromyalgia
Syndrome (FMS) and if at least one of these has no other
major rheumatologic disease. Clinical, demographic,
and laboratory data on FMS will be collected. In addition,
DNA will be collected so that genetic linkage studies
may be performed.
Please contact:
Dr. Jane Olson
Case Western Reserve University
Cleveland, OH
Tel:<PHONE_NUMBER>
Email<EMAIL_ADDRESS>Further information on these and other NIAMS Registries
is available at:
http://www.niams.nih.gov/hi/registry/registry.htm
Further information is available from NIAMS at:
http://www.niams.nih.gov/
Public health information is available from the NIAMS
Information Clearinghouse by calling:
1-877-22-NIAMS and at: http://www.niams.nih.gov/hi/index.htm
NIAMS budget information is available at:
http://www.niams.nih.gov/an/budget/index.htm
NIH Office of Financial Management web site:
http://www4.od.nih.gov/ofm/
Does the Lupus Foundation of America (LFA) do research?
A primary focus of the LFA is to encourage research
related to the causes, treatments, prevention, and cure
of lupus. The LFA directly sponsors "seed" research
monies to test new approaches and develop experimental
prototypes that may be presented for larger-scale funding
through public or other sources. This research program
is supported exclusively through donations from the
LFA's more than 50 chapters, private foundations or
corporations, and the concerned public. It is the LFA's
hope that this investment in research will produce new
information which may directly lead to much larger projects
and substantially increased funding from other sources,
particularly the National Institutes of Health. For
further information, visit: LFA
Funded Projects.
How do I find out more about the LFA's Research Grant
Program?
Each year the LFA distributes requests for proposals
(RFP) to teaching centers, hospitals, educational institutions
and researchers across the country. A primary focus
of the organization is to encourage research related
to the causes, treatments, prevention, and cure of lupus
and to directly sponsor "seed" research monies to test
new approaches and develop experimental prototypes that
may be presented for larger-scale funding through public
or other sources.
Grants are awarded for up to two years to junior investigators
(defined as academic rank of Assistant Professor or
below) to support biomedical research related to finding
the cause(s) and/or cure for lupus erythematosus.
Researchers interested in the LFA grants program can
Contact the LFA National Office and ask to be placed
on the RFP mailing list. Information and applications
are downloadable from the LFA
Research section of this site. The deadline for
applications is April 1st of each year.
How close are we to a cure?
It is difficult to know. Just as an automobile mechanic
must understand how a car engine works before he/she
can fix it, we must have a broader and more in-depth
understanding of how the immune system works before
we can find the cure. We must also continue to look
for other causes such as a virus that can cause lupus.
Through research, we establish new knowledge and a better
understanding of how the immune system functions. Our
knowledge is incomplete, but we don't know how much
more we need before we will fully understand what goes
wrong in lupus and why. So, we don't know how close
we are to a cure because we don't know really where
the finish line is. There is a great deal of interest
within the scientific community in mastering all the
complexities of the immune system. Because of this,
there is hope that we will one day understand just precisely
what goes wrong with lupus and why. This will be a major
step in the process of finding the cure.
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WORK - INSURANCE - DISABILITY
40. Is lupus included in the Americans
with Disabilities Act (ADA)?
The language of the American's with Disabilities Act
was written in broad terms and therefore, most illnesses
are included. Contact the Job Accommodation Network
to learn more about the ADA, how it applies to your
work situation and what is required of the employee
and employer to be in compliance with the law.
The Job Accommodation
Network (JAN) is a free service of the U.S. Department
of Labor, Office of Disability Employment Policy, and
provides information about job accommodations, the Americans
with Disabilities Act (ADA), and the employability of
people with disabilities. You can call the JAN via toll
free numbers and speak to a counselor about your situation.
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41. Is there a list of insurance
companies that cover lupus?
The LFA doesn't have a list of insurance companies that
write policies for people with chronic or preexisting
conditions. Every state has different insurance regulations.
We urge you to contact the State Department of Insurance
for information on health or life insurance coverage
in the state where you live. Discuss with them the particulars
of your situation to find out your options. Contact
information for U.S. State Departments of Insurance
is available at: http://www.naic.org/state_contacts/sid_websites.htm
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42. Financial Assistance
Can the Lupus Foundation of America (LFA) provide
financial assistance to individuals in need?
Unfortunately, the Foundation is not set up to provide
individuals with financial assistance. We may, however,
be able to refer you to other agencies or organizations
that can be of help. We encourage you to contact your
nearest LFA Chapter as they may be able to assist you
in locating local resources. You also can contact your
county Department of Social Services to find out about
available services in your area.
Can the LFA help me pay for my prescription medications?
If you are having difficulty paying for medications
to treat your lupus, there may be assistance available
through the Pharmaceutical Researchers and Manufacturers
Association (PhRMA). PhRMA sponsors a program that provides
prescription medications free to physicians whose patients
might not otherwise have access to necessary medications.
The Directory
of Prescription Drug Patient Assistance Programs
lists member companies of PhRMA that participate, medications
covered, and eligibility criteria. If you meet the criteria,
the pharmaceutical company will send the medication
to your doctor, who will dispense it to you. Further
information is available at the PhRMA web page: The
Directory of Prescription Drug Patient Assistance Programs
Consult your physician to determine if you are eligible
to access any medications through this program.
Does the Lupus Foundation of America have a scholarship
program to help students with lupus pay for college/training?
The LFA does not have a scholarship or any other form
of financial aid available to students. Financial aid
information is available at the following web sites:
The LFA DOES have the Gina Finzi Memorial Student
Summer Fellowships for Research Related to Lupus Erythematosus.
This program is designed to encourage young science
majors (undergraduates, graduate and medical students)
to participate in lupus related research under the supervision
of an established investigator. Preference is given
to applicants who have already earned a college degree.
The application deadline is February 1st of each year
and awards are announced each April. For further information
and application materials, see the LFA
Research section of this site.
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43. Can people with lupus qualify
for Social Security Disability?
Lupus affects everyone differently. Not everyone is
disabled by lupus. A diagnosis of lupus does not automatically
entitle a person to disability benefits. The Social
Security Administration recognizes systemic lupus erythematosus
as a potentially disabling illness and includes SLE
in their listing of impairments.
What do I need to do to apply?
First, ask your doctor if in his/her opinion you are
disabled according to the definition used by the Social
Security Administration.
Disability definition: the inability to engage
in any substantial gainful activity by reason of any
medically determinable physical or mental impairment
which can be expected to result in death or which has
lasted or can be expected to last for a continuous period
of not less than 12 months.
Second, contact your nearest Social Security Administration
office and request all information (brochures/pamphlets)
and forms to apply for SSDI (Social Security Disability
Insurance). They are listed in your phone book. You
also can call their toll-free number, 1-800-772-1213,
between 7 a.m. and 7 p.m. any business day.
Information is also available online at:
Social Security
Disability Program: Disability Information
How do I know if I am eligible for Social Security
Disability?
SSDI is an insurance plan supported through payroll
deduction (FICA withholding tax) that covers most workers
in the U.S. Eligibility is based on prior work. You
must be under age 65 and have worked long enough and
recently enough to be eligible to apply. The Social
Security Administration's web site has a Benefit
Eligibility Screening Tool (BEST)
that can help you identify all the benefits you may
be eligible for.
What if I am disabled but have not worked long enough
or recently enough to be eligible for SSDI? There
is another disability program, Supplemental Security
Income (SSI), which provides benefits to the needy and
disabled who have not worked long enough or recently
enough to be eligible for SSDI.
I've heard that it is almost impossible to get disability.
Is this true? Applying for and receiving Social
Security Disability can be difficult and time consuming;
it can take up to a year or longer. You must prove your
disability. It requires work on your part to manage
your claim and to make sure that your application is
COMPLETE. It is crucial that you provide thorough information
so the people who review your claim fully understand
the impact your lupus, and other illnesses, have on
your ability to work, and your ability to perform daily
functions at home. The Social Security Administration
(SSA) must justify the disability payments they make.
If the forms submitted do not prove to their satisfaction
that you are disabled, then the SSA can not justify
paying benefits, and you will be denied. On the other
hand, a claim that is well documented and supported
with complete information likely will provide the justification
needed for payment of benefits.
If you are denied, do not take it personally. A denial
is only a notice that the information you provided does
not prove you are disabled. There is an appeals process.
We encourage everyone to follow thorough with the appeal.
It is an opportunity for you to submit further information
to prove you are disabled.
Reference: Disability Handbook for Social Security Applicants,
Fifth Edition, by Douglas M. Smith (2000).
To assist people in completing their application for
disability, the Lupus Foundation of America has available
the Disability Handbook for Social Security Applicants.
Written by attorney Douglas Smith, this recently revised
and expanded Disability Handbook shows how to prove
to the Social Security Administration that you qualify
for benefits. The Disability Handbook for Social Security
Applicants is written for the claimant (disabled adult
workers under the age of 65) to use as a guide when
applying for Social Security Disability Insurance (SSDI)
benefits. It is also useful for disabled adults claiming
Supplemental Security Income (SSI). This user-friendly
softbound handbook walks you through the disability
application process and includes all the worksheets
needed to complete an application in a timely manner.
(137 pp., revised and expanded in 2000.)
The handbook is available through the LFA
Store, and may be available through your nearest
Chapter at a
discount.
I've just been denied disability benefits by Social
Security. What do I do? Don't take it personally.
A denial is only a notice that the information you provided
so far does not prove you are disabled. There is an
appeals process. We encourage everyone to follow through
with an appeal. It is an opportunity for you to submit
further information to help prove you are disabled.
You must appeal within 60 days.
If your first appeal is denied, then you can pursue
a second appeal where you will have a hearing before
an administrative law judge. We generally recommend
that if you progress to this level that you have an
attorney familiar with disability law represent you.
Reference: Disability Handbook for Social Security Applicants,
Fifth Edition, by Douglas M. Smith (2000).
How can I find an attorney who specializes in disability
law?
The National Organization of Social Security Claimants
Representatives (NOSSCR) has a geographic listing of
lawyers that specialize in disability cases. They can
refer you to an attorney in your area. You may reach
them during Eastern business hours by calling: 1-800-431-2804
http://www.nosscr.org/
Reference: Disability Handbook for Social Security Applicants,
Fifth Edition, by Douglas M. Smith (2000).
<
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Preview: Sharks vs. Nashville Predators, 7:30pm
October 28th, 2015 - Saturday night in San Jose featured a three act performance by new fan favorite Joel Ward. The first-year Sharks scored two first period goals to stake the Sharks to an early two-goal lead and then he finished off the hat trick with an empty netter in the third period. The Sharks finally have some positive news on the injury report...
Preview: Sharks vs. Caroline Hurricanes, 7:30pm
October 24th, 2015 - After opening the season with four straight wins, the Sharks have dropped their last three in a row, all by three goals or more. They lost to the Islanders 6-3, the Rangers 4-0 and the Kings, 4-1. The injury bug has landed on the Sharks early this season. Fortunately, Martin, Smith, and Donskoi are at least back practicing and Melker Karlsson, last year's rookie sensation has started playing for the Barracuda...The Hurricanes are predictably off to a slow start (2-4 going into Friday) as they are expected to be a bottom feeder in the Eastern Conference this season. That said, the Sharks struggled against these types of opponents last season...
Preview: Sharks vs. LA Kings, 7:30pm
October 22nd, 2015 - After opening the season with four straight wins, the Sharks have dropped their last two games against the New York Islanders and New York Rangers. San Jose lost both contests by multiple goals, a 6-3 loss vs the Islanders and a 4-0 loss against the Rangers...However, LA has bounced back over their last two games, winning a pair of tight 2-1 contests over Minnesota and Colorado...
Preview: Sharks @ New York Rangers
October 19th, 2015 - The Sharks suffered their first defeat of the season Saturday night in Brooklyn against the NY Islanders, losing by a final score of 6-3. Tonight's match up against the Rangers marks the finale of this 4-game east-coast road trip. The Sharks will then return home to face the LA Kings this Thursday at 730pm. While the Sharks continue to lead the Pacific Division with a 4-1-0 record, the road trip has proven costly on the injury front...
Preview: Sharks @ New York Islanders
October 17th, 2015 - The Sharks are off to a 4-0-0 start but barely snuck out a win last night against a New Jersey Devils squad predicted to be one of the worst teams in the league. It was easily their weakest performance of the four games, the first of which without the recently injured Logan Couture...
Preview: Sharks @ New Jersey Devils
October 16th, 2015 - The Sharks will unfortunately be without Logan Couture for tonight’s game and the foreseeable future. The No. 2 center was injured in practice on Thursday and had to be helped off the ice by Brenden Dillon and Brent Burns...Sharks head coach Peter DeBoer is making his return to New Jersey where he coached for the previous four seasons from 2011-12 through 2014-15...
Preview: Sharks vs. Washington Capitals
October 13th, 2015
The Sharks have opened the year with back-to-back wins over division rivals Los Angeles and Anaheim. Joe Pavelski shined with a three point night vs Los Angeles in the opener and Patrick Marleau led the way with a terrific two-goal performance against the Ducks on Saturday. Starting netminder Martin Jones has allowed just one goal through the first two games and is currently sporting a .979 save percentage... Game 3 tonight is the start of a four-game road trip through the Eastern Conference that concludes with games against the Devils, Rangers and Islanders.
Sharks vs. Ducks Home Opener
October 10th, 2015
Welcome back to the 2nd edition of The Puck Times, a concisely curated e-mail newsletter for Sharks fans...As is typically the case when the Sharks and Kings meet, there was plenty of hard hitting to go around. Dustin Brown took a questionable charge at Logan Couture in the first period. Later in the third, Couture returned the punishment to Milan Lucic with a bruising hip check...The Ducks have a number of new faces in their lineup this season. At forward they brought in...
Sharks vs. Kings Season Opener
October 7th, 2015
WELCOME! The Puck Times is an e-mail news brief for Sharks fans that gives you everything you need to know on game night. We know life is busy and time is scarce, so we scan the news and synthesize it for you, every morning before the puck drops. 82 games is a long season, so we want to make it effortless to stay fully informed about your favorite team. Behind the scenes, we are two brothers who grew up in the 90s watching and loving the Sharks - one writer, one web developer. We are just getting started with this project and appreciate any feedback, so feel free to contact us and share your thoughts....


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Hunter Myles Mahan is an American professional golfer who plays on the PGA Tour. He is a winner of two World Golf Championship events,
the 2010 WGC-Bridgestone Invitational and the 2012 WGC-Accenture Match Play Championship. In August 2014, Mahan won the first of the year's four FedEx Cup playoff
events, The Barclays. He won by two strokes from Stuart Appleby, Jason Day and Cameron Tringale during a final round that saw six different players share the
lead at some point. He birdied three of his last four holes to pull clear of the field. This was Mahan's first ever playoff victory and his sixth overall title
on the PGA Tour. Mahan was selected by Tom Watson as one of his three captain's picks for the 2014 Ryder Cup team, finishing with a record of 1–2–1 in the four
matches he participated in. This included a halved match against Justin Rose in the singles competition.
Mahan has been with Under Armour since 2003, and in 2010, Mahan extended his deal with Under Armour


Theater production is an art that requires many different materials to make the magic happen. Sadly, some of these materials have a larger impact on the environment than others. In this quiz, choose the materials that you use in your shops. Your results will give you a good idea of the footprint your shop is leaving behind, and you will be directed to some suggestions and alternatives for the lower-scoring products and materials you might be using.
The content and research for this quiz was compiled by the Mo’olelo Performing Arts Center in San Diego, CA. The Chicago Green Theater Alliance has taken the content and formulated it into this quiz.


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PostgreSQL versus Greenplum Database
PostgreSQL vs Greenplum
PostgreSQL vs Greenplum
PostgreSQL
Grown over time (30 years)
Complex code, hard to debug
Not many people fully understand it
Greenplum with GPORCA
Pluggable query planner, written from scratch in C++
“Powers” both SQL and NoSQL workloads:
SQL: Greenplum Database
NoSQL: SQL-on-Hadoop for Apache HAWQ
Comes with it’s own test suite (stand-alone)
Debugging tool allows to extract query information from problematic queries
PostgreSQL vs Greenplum
PostgreSQL
Included only in last versions
Basic Runtime partition pruning, otherwise partitions are only pruned during planning time
Partitions are always scanned when they can’t be included by static values
PostgreSQL vs Greenplum
PostgreSQL vs Greenplum
PostgreSQL vs Greenplum
Usually: COPY (single process, single backend)
gpLoader speeds up data loading
But is still one process
Can load data using external tables, in parallel on all segments
Scales out
PostgreSQL vs Greenplum
PostgreSQL vs Greenplum
PostgreSQL vs Greenplum
PostgreSQL vs Greenplum
Tables can be row-oriented or column-oriented
Row-oriented: traditional HEAP table
Column-oriented: every column is stored in one file
Accessing a few columns does not read the entire row
Every column can be compressed, even using different algorithms
PostgreSQL vs Greenplum
PostgreSQL vs Greenplum
PostgreSQL vs Greenplum
PostgreSQL vs Greenplum
PostgreSQL vs Greenplum


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We strongly focus solving technical problems, our audiences is from beginner to expert.


Once again I decided to give up smoking, which at first doesn’t seem all that hard. It seems like it’s not hard, many people have done it before me. So why do I struggle so hard even to not smoke just one day or a couple of hours.
First off I’d like to give an exerpt of what’s been going on in my mind between 9 and 9.05 am this morning, to give you an idea of what makes it hard:
I got up around 7 and went to work without smoking => 3 cigarettes saved from an early burning. At 9am I’d be at work for about 30 minutes, enough to read email and get settled for the day to come.
9.00.00: wow that’s interesting in IE I get such and such behaviour in firefox things just work.
9.00.01: wouldn’t this be a great time to smoke a cigarette and ponder upon possible solutions
No can’t do that your quiting smoking today.
One can’t hurt can it. YES IT CAN
9.00.15: well i guess i could just write this and this line.
9.01.30: ok let’s test this b***h
9.02.30: sweet it worked, let’s celebrate with a cigarette. No can’t have a cigarette take a tasty
nicotine gum instead.   Well now I only have to find something that makes me not long for the act of
smoking in itself
Alas the gum didn’t triumph every occasion and after taking a gum that inner voice did quiet down a lot.
In total I smoked 3 cigarettes during the day. I normally would have smoked about 14 by now. All is not lost and tomorrow there is another day to battle the demon.
What this experience is teaching me that the saying You’re your own worst enemy (link 2)
And I would definitely want to thank everybody @ Xero for their support in this matter. I would have smoked more than 2 cigarettes if it weren’t for them. These guys have been fantastic and I hope they can carry me through this mess.