*~* COMMONLY ASKED QUESTIONS ABOUT LUPUS*~*

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COMMONLY ASKED QUESTIONS ABOUT LUPUS

1. What is lupus?

Lupus is a chronic (long-lasting) autoimmune disease where 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.

2. Are there different kinds of lupus?

There are three forms of lupus including:

Cutaneous lupus (sometimes called Discoid)

affects the skin.

Systemic lupus attacks multiple systems in

the body which may include: the skin, joints, lungs, blood, blood vessels,

heart, kidneys, liver, brain and the nervous system.

Drug-induced lupus may develop after taking

certain prescription medications. Symptoms generally disappear, within weeks to

months, after the drug is discontinued.

Neonatal lupus, a fourth type, is a rare

condition. It is not the same thing as SLE.

3. 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.

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.

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; they may appear

on the face in a butterfly distribution; they may also appear, as mentioned

earlier, in areas where the skin receives sun exposure. Especially, for

example, the V of the neck.

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 of 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.

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 wide-spread 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.

4. 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, hair usually

grows back.

Will the drugs used to treat baldness

help the hair loss due to lupus?

Suppressing the disease with medication helps hair to regrow.

5. Is there anything

that can be done to cover the lesions (sores) that show-up

on my face?

There are some commercially

available make-ups. Covermark make-up is a

type of make-up that's available that may be helpful in this

situation.

6. 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.

7. 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.

8. 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.

9. What is the difference

between drug-induced lupus and systemic

lupus?

Systemic lupus is irreversible, whereas drug-induced lupus generally is

reversible. 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.

10. 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.

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.

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.

If you are interested in participating in this research or

would like

information, contact:

Recruiter or Ms. Gail Brunner

Oklahoma Medical Research Foundation

Lupus Multiplex Registry and Repository

825 Northeast 13th St.

Oklahoma

City, OK 73104

TEL: 1- or

Sisters

With Lupus (SLE) Research Project

Division of Rheumatology

University of Minnesota

14-154 Moos Tower

515 E. Delaware St.

Minneapolis, MN 55455

Tel: 1-800-51-LUPUS (1-)

Dr.

or Dr. Jane E. Salmon

The Hospital for Special Surgery

Cornell Medical Center

New

York, NY

Tel: (212)606-1189

G. , MD

V.A. Medical Center

1500 E. Woodrow Ave.

, MS 39211

Tel:

Dr.

Betty Tsao

UCLA School of Medicine

Los

Angeles, CA

Tel: 1-

Can I have my children tested?

Testing

isn't advisable in asymptomatic individuals.

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.

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.

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.

Does lupus occur more often in certain geographical areas?

No

Is lupus related to pollution or toxic chemicals?

We do

not know.

Can something in your diet cause lupus?

We do

not believe so.

11. Is there a test for systemic lupus?

There

is not a single diagnostic test for systemic lupus.

12. Why is systemic lupus so difficult to

diagnose?

It is difficult for a number of reasons:

1. 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.

2. Systemic lupus is also difficult to diagnose

because it is a disease that does not typically develop rapidly, but rather

slowly develops 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 amount of time it takes to develop is

highly variable; from several months to several years.

3. Systemic lupus is known as a Great Imitator

because it mimics so many other diseases and conditions.

4. Systemic lupus is difficult to diagnose because

there is no single diagnostic test for lupus. In fact, many people may have

positive lupus test-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 pin-pointed. (See

list in Causes, Symptoms, Testing, Treatment) 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

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.

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.

13. 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.

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 kind of 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 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.

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), or their ANA converted

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,

getting enough rest and exercise,

eating a well balanced diet,

avoiding excess sun exposure,

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.

14. I was diagnosed with systemic lupus.

Are there any particular things I SHOULD or SHOULD NOT do 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.

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.

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.

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. And if it's not, then 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.

15. Is there a cure for lupus?

At

the present time there is not a cure for lupus, but there certainly is

effective treatment.

16. The treatment of lupus

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), Clinoril, Feldene, 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. There is, of course, no known relationship between

lupus and malaria.

The fourth

family of medications, immunosuppressants/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 a flare that

effects 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 nonsteroidal, 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.

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 ineffective.

What can

I do about the weight gain brought on by the prednisone?

Increased appetite is a well

recognized 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. During those times, however, when you're really

hungry, here are some things you can do to combat the munchies:

Drink a large glass of low sodium vegetable juice

cocktail

Eat a bowl of air popped or low fat microwave popcorn

Eat a plate of raw vegetables dipped in fat free sour

cream

If you can, go for a walk

Drink a cup of decaffeinated flavored coffee with milk

These are low fat

substitutions which can reduce your overall caloric intake and hopefully curb

your weight gain. Taking steroids can also increase 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 140-200 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 between fresh or frozen vegetables or

canned, stay away from the canned vegetables and choose fresh or frozen because

they are lower in sodium.

Support groups and commercial

weight loss programs can assist in weight control efforts.

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 certain 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.

17. 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.

18.

Is acupuncture helpful to people with lupus?

There

have been anecdotal reports from people stating that they received acupuncture

and believed they benefitted from it. This an area of alternative medicine

which requires further controlled scientific studies before we can say whether

or not acupuncture is helpful in treating the symptoms of lupus. However, most

physicians are not impressed with the benefits of acupuncture.

19. 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.

20. I have heard that hair dyes may trigger flares in lupus.

Does this mean I should stop dying my hair?

One

study that 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.

21. Flares

How can I tell if my lupus is active?

When

a lupus flare comes on, people will usually notice a return of the symptoms

they experienced previously, but sometimes the onset of new symptoms. These may

include, but are not limited to: fever, achy joints, swollen joints, an

increase in fatigue, perhaps a loss of appetite, rashes, hair loss, sores or

ulcers in the mouth or nose. A temperature over 100 degrees, not due to an

infection, is often a helpful sign.

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

Or if you have a combination of

symptoms such as severe headache with neck stiffness and also fever. This

combination of symptoms could be serious and you need to let your doctor

know about it.

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

you've taken it for the period of time that s/he prescribed and your symptoms

are no better or if 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?

Well,

yes. The course that lupus takes is highly variable. 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 course where they have a

chronic state of flare and have symptoms day-in and day-out.

22. 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. And 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 life-span.

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.

The

studies that were done to arrive at this figure where done over a period of ten

years. They followed patients with lupus from the time of diagnosis for ten

years. At the end of these studies 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 that there are many people

living with lupus and have been living with lupus for 15, 17, 19, 25, 27, 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 life-span.

When people die of lupus, what do they usually die of?

Overwhelming

infection and kidney failure are the two most common causes of death in people

with lupus.

23. 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 having 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 nonsteroidal

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.

24. Lupus Research

Is there 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 1995, there were over 200 research

abstracts listed that pertained to lupus. The majority of the studies were

basic research.

Currently,

we are aware of many ongoing clinical studies that are using patients to

determine if there is a genetic linkage in lupus (for details, see question

10). We are also aware of a multi-centered clinical trial which is evaluating

DHEA, a male hormone, to see if it can improve clinical outcome and disease

symptoms in women with systemic lupus. There are also clinical trials being

conducted using Toleragens,TM 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.

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, land 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 new SCORs are

located at the Hospital for Special Surgery, Cornell Medical Center in New York

City, and at the University of North Carolina, in Chapel Hill. Federally funded

research at these specialized centers will permit basic and clinical

researchers to work together to focus on one disease.

· The Hospital for Special Surgery

Cornell Medical

Center in New York City, NY

Dr.

Elkon will focus on genetic, cellular and molecular causes of SLE in

order to develop new approaches to treatment. His team will also investigate

antiphospholipid antibodies and how they activate the clotting mechanism which

may result in miscarriages, strokes and blood clots.

· University of North Carolina at

Chapel Hill, NC

Dr.

Eisenberg using animal models (mice), will focus on how the immune

system regulates the production of autoantibodies in SLE.

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. Major research centers in New York City,

Baltimore and Los Angeles are collaborating, including:

· Hospital for Joint Diseases

New York, NY

Dr. Jill Buyon

· s Hopkins University School of

Medicine

Baltimore, MD

Dr.

Petri

· Hospital for Special

Surgery/Cornell Medical Center

New York, NY

Dr.

Sammaritano

· St. Luke's/Roosevelt Medical

Center

New York, NY

Dr. Joan

Merrill

· UCLA Medical Center

Los Angeles, CA

Dr. Ken

Kalunian

These

researchers are conducting randomized double-blind, placebo-controlled studies

on the effects of oral contraceptives on disease activity in women with SLE and

on the effects of hormone replacement therapy (HRT) with estrogens and cyclic

low-dose progestins in post-menopausal women with SLE.

In

early 1996, the NIAMS established The Lupus Registry and Repository to study

not only people with lupus, but also 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:

· Oklahoma Medical Research

Foundation

Oklahoma City,

OK

Dr.

Harley will direct this extensive project. He and his associates will

collect and update clinical, demographic and laboratory data on all patients

with lupus and their families for the Lupus Registry. They will store blood,

cells, and DNA from these individuals in the Lupus Repository.

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:

Recruiter or Ms Gail Bruner

Oklahoma Medical Research Foundation

825 Northeast 13th Street

Oklahoma City, OK 73104

1- or

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

Diane Chin, Coordinator

NIAMS/HJD Neonatal Lupus Registry

Hospital for Joint Diseases

301 East 17th Street, Room 1606

New York, NY 10003

Tel:

Fax:

NIAMS

is increasing research into the following:

· causes of lupus

· mechanisms of tissue injury

· the antiphospholipid syndrome

(APLS)

· why lupus is more common in women

and certain minorities

For further information on NIAMS research contact:

NIAMS Information

Office of Scientific & Health Communications

NIAMS/NIH

Bldg 31, Room 4C05

Bethesda, MD 20892

TEL:

Does the Lupus Foundation of America do research?

A

primary focus of the LFA 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. This

research program is supported exclusively through donations from the LFA's

nearly 100 constituent 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, in the future.

The

LFA and its chapters contributed more than $1,000,000 for lupus research in the

past two years.

How do I find out more about the LFA's Research 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 at

and ask to be placed on the RFP mailing list. Applications are

mailed in early December. 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, before we can figure out how to fix

lupus we must have a broader and more in-depth understanding of how the immune

system works and we must continue to look for other causes such as a virus that

can cause SLE.

Through

research, we establish new knowledge and a better understanding of how the

immune system functions. We know 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 does go wrong with lupus and why. We will then have a clearer idea of how

to go about curing this disease.

25. 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 general recommendation is if

you go to a place which is affiliated with a medical school, a university

hospital for example, that kind of health care institution will have faculty on

staff which very often are involved in research. People who are involved in

research are generally the most up-to-date on the latest advances in diagnosis

and treatment of lupus. So, these places 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.

26. 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 medication which 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 pregnancy 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.

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

life-span.

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.

27. 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.

Reference:

" Control Your Pain: 144 Sure-Fire Strategies for Reducing the Pain of

Lupus, " by H. , Ph.D. Available through the Lupus

Foundation of America.

28. Lupus and 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 studies that have looked at this question. However, none of these

studies has shown a clear association between silicone breast implants and the

development of lupus disease. Further studies are needed.

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.

References: To receive the most recent

information on breast implants contact the Food and Drug Administration (FDA)

Breast Implant Information Line at 1-

29. 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 which

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, in 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.

Is it

possible to have these 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.

Is it

possible to have antiphospholipid antibodies and not have symptoms related to

them, ie. blood clots, miscarriages or low platelets?

Yes. In fact, most people

with these antibodies DO NOT and will not have symptoms related to them.

30. 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 the great imposter, can sometimes mimic or imitate the

symptoms of MS.

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.

31. 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:

Contact the LFA for articles on childhood lupus

32. 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 which 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.

33. 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, it produces

large quantities of antibodies. AIDS is contagious, lupus is not. The vast

majority of people diagnosed with AIDS die from their disease. The vast

majority of people with lupus can expect to live a normal life-span.

34. Is lupus contagious?

No,

not even through sexual contact.

35. Financial Assistance

Can the Lupus Foundation of America 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.

Can the LFA help me pay for my expensive 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 which 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. To request a free copy of the Directory, call

1-. 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.

The

LFA DOES have the 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 each year is February 1st and awards are announced each

year in April. For further information and application materials, contact the

LFA National Office at

You

also may want to contact your county Department of Social Services to find out

about available services in your area.

36. Can people with lupus qualify for Social Security

Disability?

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).

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, have worked long enough and recently enough to be

eligible to apply.

What if I am disabled but have not worked long enough or

recently enough to be eligible for SSDI?

There

is another disability program, Social 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 if present, 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.

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 , this recently revised and

expanded Disability Handbook has two parts. The Disability Workbook 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. The second part, The Disability Evaluation Guide for

People with Systemic Lupus Erythematosus, is written for the applicant's

physician(s).

This

user-friendly handbook, bound in an easy to use three-ring binder, walks you

through the disability application process and includes all the worksheets

needed to complete an application in a timely manner. (205 pp., revised and

expanded in 1995.)

Available

through the LFA, National Office for $32.95 (including shipping and handling),

and may be available through your local 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 thorough 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 represent you.

Reference:

Disability Handbook for Social Security Applicants.

How can I find an attorney who specializes in disability

law?

The

National Organization of Social Security Claimants Representatives 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 by calling:

1-

Deanna

LUPUS Serenity Prayer

Lord, grant me the serenity to accept the things I cannot

change, the courage to change the things I can, and the

wisdom to hide the bodies of doctors I shot when they

said,

You're perfectly healthy, it's all in your head "

LUPUS Support Group...

http://groups.yahoo.com/group/LUPIES

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