Welcome Nikki.

[Guest guest]

Glad you found us

Nikki. I want to tell you that information dispels fear. Get as

much as you can and you will feel better. I have had lupus since a teen

and I am 57 and still kicken! When I was first diagnosed I looked up

lupus in an old dictionary and it said it was a fatal disease. That

freaked me out! It is no longer considered a fatal disease. A long

time ago Dr’s didn’t recognize a lupus attack until the patient was

nearly dead. Times have changed tremendously. With the advances in

blood testing and more knowledge Dr’s can find it a lot earlier than

before. As a matter of fact, they catch it a lot earlier then they did 15

years ago! They have more meds for it too. We can control our

problems with meds and information on how to take care of ourselves. I

not only raised my two kids while I had lupus, they have kids of their own now.

I don’t know where you are getting the statistics about not living

long enough but I can ashore you that most of us on line here can testify that

isn’t so. How serious can the Dr. think your case is if he hasn’t

given you any lupus meds? Are you seeing the proper kind of Dr? You

need to see a Rheumatologist! Lupus is in the rheumatic disease family

with arthritis and some other stuff. We have a lot of information for you

to see. A big book store has books on lupus now as well. Yes,

people can die with it but most of us live with it. I won’t lie and

say it is fun. We all hate this disease and are waiting for a cure. We

all have to adjust our lives to enjoy better health. You need to rest

when tired, stay out of the sun without sun block and hats. Here is some

more info for you.

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

http://www.uklupus.co.uk/lupdat.html

http://www.itzarion.com/lupusgroup.html

Keep in touch and relax!

From: Nikki Stover

Sent: Monday, June 28, 2004 7:33

AM

To: LUPIES

Subject: Hi! I'm new to

the group...

Hi my name is Nikki and I am new to the group.

Actually

this is the first time I have joined any

group online

so please forgive me if I do something

incorrectly!

I was just

diagnosed last Thursday with Lupus. I am

I have cried

everyday. I think for me

the biggest

thing is not knowing what is going ot

happen.

I have never been this scared in my life! All the statistics I

read lead me

to believe there is a good chance I may

not live to

see all of my girls graduate from high

school.

I don't mean to sound pathetic but I feel desperate.

My Doctor

has told me she isn't going to do anything

different

than what we have been doing, which is

nothing.