Welcome Kate

[Guest guest]

Welcome Kate,

Thanks for joining; you came to the

right place. We are a friendly group and informative too. Feel free to

complain, ask questions, tell jokes, cry, whatever. A lot of us have

multiple illnesses. I do. My name is Cheryl and I am married (25 yrs) to a

guy who is bipolar. We have our trials. His brain is broken, my body is

broken. LOL We have a little Manchester Terrier Dog and he is a lot of

company for me. I am on permeate disability.

Cheryl in CA

Blood Work

ANA (anti-nuclear

antibodies) tests .. confusing .. aren't they?

Let me try to explain the process so it is easier

to understand.

When the lab tests your blood sample for ANA

cells, they start by taking

a couple of droplets of blood and dilute them with

another liquid,

usually alcohol.

A result of 1:20

reads 1 to 20 .. or 1 drop of blood to 20 drops of

alcohol.

If they see ANA cells, then they dilute it again

...

doubling the amount of alcohol each time..

then they read the results again .. and if they

see more cells, then

they dilute it again ..

and again .. and again .. until they see a

minuscule amount to no more

cells.

So .. 1:20

is usually where they start (remember to read it as 1 to 20)

For some reason only known to the phlebotomists

(smiles .. the vampires

who draw our blood), on the higher readings such

as 1:160 they will

leave off the zero. Not always, but sometimes.

So a reading of 1:16 is really 1:160 .. (1 to 160 = 1 drop of blood to

160 drops of alcohol).

There were so many cells in your blood that it

took a whole lot more

alcohol to dilute the sample enough where no cells

showed up.

The cells that are " captured " are also

put on a slide and stained with a

special concoction of antigens. After the cells

have been stained, they

are washed and are then viewed under a fluorescent

lighted microscope.

The cells will glow in different stain patterns.

The patterns have been

divided into four to six groups (depending on the

testing facility) and

determine what kind of disease correlates to each

pattern.

Example: a reading of 1:160 with a Homogeneous

pattern is almost a

definite diagnosis of SLE (lupus).

From a low reading to a high reading:

1:20 = negative

1:40 = very low positive

1:80 = low positive

1:160 = medium positive

1:320 = high positive

1:640 = very high positive

I hope this helped you some.

GENERAL ASPECTS OF LUPUS

Q How

can I explain lupus to my friends?

A Lupus is a disease in

which the immune system of the body becomes too active. This

over-activity affects the blood, and in turn, almost any organ in the

body. The commonest clinical problems are tiredness, skin rashes, allergies,

joint and muscle pains, and, if the disease spreads, of kidney, lung and other

organ disease.

Q Is

lupus still considered a rare disease in the UK? As none of my friends have

heard of it I suppose it must be?

A At long last, lupus is

being recognized as the important disease it is in this country. Figures for

its prevalence vary between 1 in 800 and 1 in 1000 women. It is commoner than

many well-known diseases, such as multiple sclerosis. In the 30 years in which

I have been running a lupus clinic in this country, the picture has changed out

of all recognition. When I first started, lupus was considered to be extremely

rare and there was very little research undertaken - happily this has changed

and many physicians now have experience in lupus.

Q Are

there different types of lupus?

A There are two main forms

of lupus. Discoid lupus is a milder form of the disease, which involves only

the skin, usually the face, neck and sometimes the upper chest. It may cause

raised scaly skin areas and/or irregular bald spots on the scalp. The second

type, which is usually more severe, is called Systemic Lupus. It involves the

internal organs and systems of the body. Although systemic lupus may be mild,

if it is not controlled it can result in damage to vital organs such as the

kidneys, brain, heart and lungs, and therefore may be life-threatening.

Q Are

there more cases of lupus now than say 10 years ago, or is it just better

known?

A There are

certainly many more cases of lupus throughout the world. It is conventional for

we doctors to say that the reason for this is “better recognition”

of mild cases, but in my heart of hearts, I think the disease is genuinely on

the increase.

1

Q At

what age does lupus usually occur?

A Lupus occurs at any age.

It occurs in the newborn, in rare instances. Some cases appear in childhood .

The main age groups are the 15-45 year olds and there is a huge female

predominance - women outnumbering men by 9 to 1.

Q When

telling somebody I have lupus, they said that’s just like ME isn’t

it? Is there any relationship as I was lost for words?

A Many of our lupus

patients are first diagnosed with having ME. It must be remembered that

“ME” is a rather diffuse syndrome with widespread aches and pains

and stiffness, and in fact is a mimic for many diseases. Lupus is NOT

related to ME in any direct sense.

Q

Is lupus contagious or infectious?

A There is no evidence

that it is either contagious or infectious.

Q What

“triggers” lupus?

A During its course, there

may be “flare-ups” when the disease is active and remissions when

the disease is controlled. Perhaps the best-known triggering factor is

sunlight. Infections, injury, surgery, overexertion and exhaustion, nervous

tension and emotional upsets have all been identified as possible precipitating

factors. Certain drugs, such as sulfa compounds, may produce lupus symptoms and

cause flare-ups.

Q Why

are lupus patients not being asked to partake in trials for medication etc. as

they are in many other prevalent diseases?

A Lupus patients are

taking part in trials throughout the world - certainly our research work at St ’ is

totally dependent on the help of our patients. I agree that drug trials may be

less frequent in lupus than say in osteoarthritis, rheumatoid arthritis and

osteoporosis, where big drug companies are competing with each other for new

therapies in these huge markets. Lupus, in this respect, has always been a

“poor relation”. However, in terms of scientific and clinical

research, collaboration between doctors and lupus patients is producing

results. Take a look at any issue of the international research journal

“LUPUS” for example.

2

Q I

have read of a connection between glandular fever and lupus. Is there any truth

in this?

A The virus that causes

glandular fever has not been shown to cause lupus. Having said this there are

many patients with lupus who, especially in their teens and twenties, are given

the label of “recurrent glandular fever”. This is probably because

they have had swollen glands and general malaise and aches and pains - features

common to both diseases.

Q I

am a male sufferer, will lupus affect my ability to father a child?

A No, there is no specific

hormone or reproductive problems in the majority of males with lupus.

Q Why

is there a 9 to 1 female to male ratio in lupus?

A We still do not know why

there is such a strong female preponderance, though a lot of research work is

focusing on the effect of various sex hormones on the immune responses. It is

also a mystery because men who develop lupus do not have any particular hormone

abnormalities.

Q My

lupus seems to get worse before my periods. Is this unusual?

A This is very common and

a very prominent feature of lupus. In some patients the joint pains and general

tiredness are far worse in the days before the menstrual period. Perhaps this

is another example of the importance of hormones in the clinical pattern of

lupus.

Q Everyone

tells me how great I look, but I feel rotten. How do I tell them about myself?

A You are

absolutely right. One of the biggest problems in lupus is that most patients

LOOK completely well. There is no easy answer to this question. I find that my

patients each handle this problem differently. The help of close friends or

family is often vital here, being better able to explain this disease to the

unsympathetic neighbor or colleague.

Q Has

anything been found to link lupus with areas of the country?

A There is no good

evidence for this at the present time. In general local “epidemics”

have been associated more with the training of the doctor and his or her

ability to diagnose lupus cases at an early stage.

3

Q If

you have lupus, can you not get AIDS?

A One does not protect

from the other. There have been a few reports from America of both AIDS and lupus in

the one patient.

Q How

often should my consultant see me for a check-up if my lupus is still active,

or even when it’s calm?

A In our unit we see

patients frequently when the disease is active, or when changes are being made

in treatment, but for those with quiet disease or disease in remission we tend

to see every 6 months. This is not ideal as 3 monthly appointment would be the

norm in many countries, but sadly, our waiting list dictates our position.

Q What

are your views on breast silicone implants? I was considering this step

when my lupus is calm.

A Although the

“official” line is that these do not cause autoimmune diseases, I

think there is still a suspicion hanging over them, especially in people with

an autoimmune disease background such as lupus. Unfortunately the whole issue

has been muddied by the legal side and good research is now hard to come by. My

own advice on this, for what it is worth, is to avoid silicone implants if at

all possible.

Q When

applying for a job, I have to fill in a medical form. As soon as this is seen I

magically don’t get the job. Do you feel a lupus sufferer should be

discriminated in this way if their lupus is calm and they are able to do the

job that is required?

A Unfortunately the

situation you describe is all too common and in my clinic I spend a lot of time

writing letters in support of my patients who have been discriminated against

by the label “lupus”. I suppose in one way it is understandable if

an administrator or clerk looks up lupus in one of the older books and reads a

saga of doom and gloom; the odds are “stacked against you”. I think

that with general education of the public this is changing for the better but

certainly if your disease itself is not severe you should try to get your

doctor to write a strongly supportive letter. You may know that some of the

members of my extremely busy team at St

’ themselves have lupus.

4

Q What

does ‘being in remission’ really mean for the lupus patient?

A ‘Being in

remission’ means being well as far as clinical symptoms are concerned. We

find many patients who are clinically very well but in whom the blood tests are

still not back to normal. Definitions vary but, as far as I’m concerned,

the clinical features are far more important than any immunological test

results. Although most of us practicing in the world of lupus feel that the

chances of prolonged and life-long remission are good - certainly after the age

of 40 - only time will tell, and complacency is wrong as far as doctors are

concerned.

Q Is

it common to progress from mild lupus to Sjogren’s Syndrome after the

menopause, and would this mean that the debilitating fatigue, myalgia and

arthritis of mild lupus, instead of hopefully disappearing with the menopause,

might continue for the rest of my life?

A Yes it is. Many of our

lupus patients around the time of the menopause suffer less

“serious” disease but are left with Sjogren’s Syndrome (dry

eyes, dry mouth and aches and pains). Even these do not necessarily continue

for more than a few years.

Q Is

rheumatoid arthritis the same as the arthritis my lupus gives me?

A No. Rheumatoid arthritis

can and does damage joints. In lupus the joints are not primarily damaged

(prolonged high-dose steroids can in fact, cause joint damage, but this is a separate

issue). Some lupus patients get deformities from tightening of their tendons,

but this is rather different from the erosive or “corrosive”

disease caused by rheumatoid.

5 THE GENETICS OF LUPUS

Q I

have read about a lupus chromosome/genetic link - is this true?

A Yes,

almost every department in the world studying lupus is looking at genetic

aspects of the disease. All of us, both patients and doctors, know that there

are families with lupus and genetic aspects are clearly involved - these are

weak but definite. Those who study genetics (map readers of the gene) are finding

clues in lupus, not yet as strong as in other diseases - but major

advances are being made.

Q I

am a father with lupus whose son has just been diagnosed with lupus as well. Is

this extremely rare?

A Yes, it is. I have, in

fact, one other family with a father and son involved, but this is within the

context of a clinic seeing 2,500 patients! There are certainly genetic factors

in lupus, although these are not as strong as in many other diseases. Despite

the fact that this association is rare, I still think it underlines the need

for lupus patients who are worried about their offspring having symptoms to

have them tested for lupus.

Q Do

men have worse lupus than women?

A No, there have been many

studies of this question and the answer has always been that, in general, there

are no major differences.

Q My

daughter of 10 has been diagnosed as having lupus, is the prognosis any

different for a child compared to an adult? Will she always be

chronically ill?

A The prognosis for

children has been shown to be the same as for adults, and NO she will not

always be chronically ill. Many of my young patients are now leading normal

lives and are off all treatment.

Q Is

lupus exactly the same in white and black sufferers?

A In general, yes. There

aren’t major differences. Older studies in America have suggested in

particular that black patients had worse disease than white, but these studies

were flawed in that they did not take into account treatment regimes,

socio-economic status and so on. More modern studies show that although there

are some differences (possibly more kidney disease in black patients), these

differences are not as exaggerated as had been previously thought.

6

CLINICAL FEATURES OF LUPUS

THE SKIN

Q Do

lupus patients have fluorescent tube lighting or VDU allergy?

A In general no. Although

ultra-violet wavelength light can make lupus worse, it is only the very, very

exceptional patient who is exquisitely sensitive to UV light and develops

rashes in intense fluorescent lighting. Normal office, shop and home

fluorescent lighting is not a threat to the vast majority of lupus patients.

Q I

lost my hair, will it come back?

A Yes.

Hair loss is very common during active lupus and it almost invariably comes

back, though there are some patients, with very severe discoid lupus, in whom

patches of hair loss persist.

Q My

finger nails are always blue, should I worry about this?

A There are a number

of causes of nail discoloration and it is difficult to give an easy answer to

this question. Certainly lupus (especially discoid lupus) can cause nail

changes. So, too, can drugs - occasionally antimalarials cause a darkening of

the nails, but there are many other conditions and it is worth seeing a doctor,

perhaps a dermatologist.

Q Lupus

panniculitis or profundus - what is it? What triggers it? I have been on plaquenil,

steroid creams and injections.

A Lupus panniculitis

is a rare inflammation of the fat beneath the skin, leading to a lumpy,

sometimes painful dimpling of the skin and the tissue beneath it. It is an

extension of skin lupus. It is rare and sometimes slow to respond to treatment

(normally treatment is with plaquenil and occasionally with steroids). The

cause is not known. It is usually not associated with more severe internal

lupus.

Q I

have a severe reaction to insect bites. How do I deal with this? Is it common

to lupus sufferers?

A Yes, it is very

common for lupus patients to suffer severe adverse reactions to insect bites.

My experience has been that this does, in fact, fluctuate and sometimes, as the

lupus becomes more quiet, the problems are less severe.

7 THE ORGANS

Q I

suffered liver damage due to a severe lupus flare, will it clear up or will I

feel tired and unwell always?

A Surprising

though it may seem, the liver is rarely seriously involved in lupus - one of

the organs which seems curiously to escape. When we see a lupus patient with

liver abnormalities we always consider all other options, such as virus

infection etc. I’m afraid in this case it would need your own doctor to

answer this specific question.

Q Does

lupus lead to abnormal cervical smears?

A Yes. Abnormal

cervical smears are very common in lupus - though it is very rare that these

abnormalities are serious or pre-malignant.

The reasons for these abnormal smears are unknown, and

certainly my own team at St ’

are studying this observation further.

Q What

are the dangers of protein in my urine?

A Protein

in the urine is the first sign, in many cases, of inflammation in the kidney.

It is very important and may or may not require an increase in treatment. It is

our practice here in the Lupus Unit at St

’ to teach patients to test their own

urine for protein. A negative test at least provides a lot of reassurance. A

positive test may require further investigation, especially if the protein in

the urine persists.

Q I

suffer from lupus and in particular trigeminal neuralgia. Is this common? I am

on carbamazepine - is this appropriate?

A Trigeminal

neuralgia - pain and pins and needles along one side of the face, often across

the cheekbone, is a common medical condition. Normally, the cause is unknown.

Yes, it is seen in lupus and perhaps even more frequently in patients who have

Sjogren’s Syndrome (dry eyes and dry mouth). You say that you are on

carbamazepine, which is the most widely used medicine for this troublesome

complaint. It has no adverse effects in lupus patients.

8

Q What

is the link between inflammatory bowel disease and lupus? I have ulcerative

colitis and lupus. Are there many suffering like me?

A There are

a small number of lupus patients who do suffer from inflammatory bowel disease.

There is a far greater number who have “irritable bowel”. The

distinction is often very difficult to make and requires expert

gastro-intestinal consultant opinion.

Q How

can the hips be affected in lupus arthritis and what is the treatment?

A The hips can be

affected in lupus - usually mildly. A potentially more serious problem is in

patients who have been on steroids for a long time, where softening of the hips

occurs (so-called avascular necrosis). Sometimes this is sufficiently severe to

warrant hip replacement.

Q I

am so moody and depressed, is it the lupus or the drugs? Is there anything I

can do?

A Both

the disease and the drugs (especially steroids) can cause these symptoms. Lupus

in particular can cause lethargy, moodiness and depression. In some patients

the depression can become severe. It is important to recognize this, as medical

treatment of the lupus can help this problem.

Q Do

many lupus sufferers have to undergo spleen removal or are there any other

satisfactory means of platelet control? What are the benefits of spleen

removal?

A A small number of lupus

patients undergo spleen removal. In some patients the first manifestation of

lupus has been bruising and a low platelet count, and the original diagnosis is

“thrombocytopenia” (low platelets). In some, the disease does

not respond to conventional medicines, including steroids, and ultimately

spleen removal is required. The results of spleen removal are largely (though

not always) successful and the results in lupus are as good as those in

patients who do not have the disease. There is one negative as far as spleen

removal is concerned and that is an increased risk of certain infections such

as pneumococcal infection. Vaccination for this is vital.

9

Q I

have a pleural effusion from lupus. Can it be reversed and what is the

treatment now?

A Pleurisy

(inflammation of the lining of the lungs) and fluid in the pleura (so called

pleural effusions) are a feature of lupus flares. Yes, they can be reversed,

usually with steroid treatment, and the good news is that they rarely leave any

permanent scarring or side-effects.

Q I

bruise easily, is this lupus or steroid medication?

A Bruising is most

commonly a feature of steroid medication. It is almost universal in people who

have been on steroids for a long time. Lupus patients who are not on steroids,

in fact, have no major problems with bruising, though there is a rare condition

in lupus known as thrombocytopenia (low platelets), and, if bruising is a major

feature and you are not on steroids, then the platelet count should be checked.

From: Kate

Kopasz

Sent: Tuesday, April 20, 2004

12:08 PM

To: LUPIES

Subject: KATE'S INTRO

Hello Everyone!

I have actually been here (but not really) for a short

time. I had joined a few weeks ago and then we got a surprise

visit from my father in law who was driving from NY to IL the next

day. He gave us one day warning. As some of you can probably

imagine, when living with chronic illness, one's house isn't always in

" guest ready " shape. I had to put my lists on digest and get to

work. He visited for 5 days and then Easter break with 4 children at home

didn't give me much time to read email. I just took myself off digest and

wanted to share an intorduction with all of you. I think I will just jump

in here rather than try to read all the old digests of the past couple of

weeks.

I'm Kate, a 42 year old mom of 4 daughters (ages 14, 12, 8.5

and 3.5). I have been happily married for 15 years to my husband,

. We also have two puppies. We live in the suburbs of Chicago,