Re: anyone familiar with lupus?

June 4, 2006

- when Hunter was at Emory (Egleston's Childrens Hospital) the young

girl in the next room was having a biopsy of her kidney to test for Lupus. We

only talked with her parents briefly - both girls were so sick and both had

biopsy on the same day. One thing that her dad told me was that his daughter

suffered with fatigue and high protein in her urine and that they first had

thought she had JRA. Her biopsy provided the info they needed - she had

lupus. Don't know anymore than that. Hope you get the answers that you need.

Sandi Ken and Hunter (7 Systemic)

June 4, 2006

My daughter also had a speckled ANA of 1:320. She had various symptoms. Her

doctor, which is one a few on the list have mentioned, Dr. Vehe, said that her

ANA was not high enough to be lupus, but that it might change in the future.

Kim

In a message dated 6/4/2006 7:30:11 PM Central Standard Time,

sonia1md@... writes:

I know that people with Lupus have some of the same rash issues and

Aundrea is also ANA positive (speckled pattern 1:320 which occurs

with Lupus.

June 4, 2006

Hi . She had the joint pain, fatigue, fevers, costochondritis, hemolytic

anemia, mouth ulcers and protein in her urine, but it went away. She did not

have the rashes, and she did not lose hair, which is another big symptom. I

hope you get some answers soon. Kim

In a message dated 6/4/2006 9:12:49 PM Central Standard Time,

sonia1md@... writes:

Kim does your daughter have any other " lupus-like " symptoms? Maybe

I will ask Aundrea's rheumy about rechecking her ANA. I know that

in the dr's progress notes there has always been mention of checking

for SLE but I think her labs weren't showing full manifestation of

lupus.

(Aundrea 10 systemic jra)

June 4, 2006

-.

I am not that familiar with Lupus, although I did once have a friend

with discoid Lupus ( I think thats how its spelt)

I have often thought of her when you talk of Drea's facial rashes. I

have to say I think if lupus when you talk about Drea's issues

sometimes.

Has any of the doctors ever mentioned MCTD ( Mixed Connnective

Tissue Disorder) I have been coming across a lot about this as I

have been researching connective tissue disorders and Nicks heart

issue. Heres a little bit about it....

What is Mixed Connective Tissue Disorder?

Mixed Connective Tissue Disorder is an autoimmune process with

symptoms of Scleroderma, Myositis, Systemic Lupus Erythematosus ,

Rheumatoid Arthritis and/or other autoimmune diseases. It is a

description of a group of symptoms occurring together. This is

different from a diagnosis that describes the underlying process.

It is a disorder of the immune system, which normally functions to

protect the body against invading infections and cancers, and

toxins. In Mixed Connective Tissue Disorder, as in other autoimmune

diseases parts of the complex immune system is over-active and

produces increased amounts of abnormal antibodies that attack the

patient's own organs.

Sometimes MCTD is called Overlap Syndrome or Undifferentiated Mix

Connective Tissue Disorder. Some writers discriminate between them

claiming that each of these are different. Some argue MCTD is not a

distinct entity at all, and is just one of the forms of Lupus or

Scleroderma.

MCTD can affect many parts of the body, including the joints, skin,

kidneys, lungs, heart, endocrine, digestive, and nervous system,

blood vessels which all are made up of connective tissue. There are

reports of psychiatric disturbances similar to those found in Lupus.

The signs and symptoms of MCTD differ from person to person, with

the symptoms of either Lupus, or Scleroderma, or Myositis or other

autoimmune disease being most prevalent. Since its manifestations

can vary it is often misdiagnosed. The disease can range from mild

to life threatening. It can be mild for many years, and then after

about 20 years of having the disease a medical crisis may occur. The

lungs and kidneys are particularly at risk. Lungs and kidneys

symptoms are particularly serious involvement and should be

monitored vigilantly by both the doctor and the patient.Most people

have subtle signs and symptoms of the disease many years before ever

getting a diagnosis. They can include fingers swelling, joint and or

muscular pain, irritable bowel syndrome, digestive problems,

Raynaud's symptoms (fingers turning white when cold), allergies,

general malaise, sleep disturbances and quite frequently

overwhelming fatigue. Sometimes the symptoms feel like the flu. Some

patients have frequent infections including gum infections, sore

throats, stomach infections, and respiratory infections. Symptoms

vary, and each person's illness can be quite different.

Often a person with MCTD goes to many doctors with these small

complaints, but often a doctor will not grasp the whole picture

since it is very rare. Many patients are told they are depressed and

put on anti-depressants. Frequently the illness progresses until

there is damage to the internal organs. It is often then that the

diagnosis is made.

Often the diagnosis is made based on the symptoms. But, there are

several tests of autoimmune disease. Usually the first test given is

the ANA (anti-nuclear antibodies). This is a general test of

autoimmune disease. A " speckled " pattern and abnormally high results

are found in the ANA if MCTD is present. Although in the early

stages of MCTD, it can be negative.

If the ANA is positive, additional tests will be given to identify

the kind of autoimmune disease present. The RNP antibodies are the

hallmark of MCTD, and will be abnormally high as well. New Evidence

in an article in Arthritis and Rheumatism (May 1999)demonstrates

that antibody to RNA is a better marker for MCTD since it tracks the

activity of the disease. A person with this disease may have

antibodies found in the various other autoimmune disease as well.

, it might be worth reading up on some of this and question the

rheumy next time you talk to them? Hope this helps a little.

hugs Helen and (8,systemic)

June 4, 2006

Kim does your daughter have any other " lupus-like " symptoms? Maybe

I will ask Aundrea's rheumy about rechecking her ANA. I know that

in the dr's progress notes there has always been mention of checking

for SLE but I think her labs weren't showing full manifestation of

lupus.

(Aundrea 10 systemic jra)

>

> My daughter also had a speckled ANA of 1:320. She had various

symptoms. Her

> doctor, which is one a few on the list have mentioned, Dr. Vehe,

said that her

> ANA was not high enough to be lupus, but that it might change in

the future.

> Kim

>

> In a message dated 6/4/2006 7:30:11 PM Central Standard Time,

> sonia1md@... writes:

> I know that people with Lupus have some of the same rash issues

and

> Aundrea is also ANA positive (speckled pattern 1:320 which occurs

> with Lupus.

>

June 4, 2006

Thanks Sandy for the info...Drea had a very small amt of protein in

her urine 3 years ago. She has never had any kidney problems during

this 3 years.

thanks again,

sonia (drea 10 systemic jra)

>

> - when Hunter was at Emory (Egleston's Childrens Hospital)

the young

> girl in the next room was having a biopsy of her kidney to test

for Lupus. We

> only talked with her parents briefly - both girls were so sick and

both had

> biopsy on the same day. One thing that her dad told me was that

his daughter

> suffered with fatigue and high protein in her urine and that they

first had

> thought she had JRA. Her biopsy provided the info they needed -

she had

> lupus. Don't know anymore than that. Hope you get the answers

that you need.

> Sandi Ken and Hunter (7 Systemic)

>

June 4, 2006

Thnnks so much Helen for all the information. I can see why the

docs have continually mentioned monitoring Aundrea for Lupus because

she has some of the symptoms, although she doesn't or at least

didn't meet all the lab criteria in the past.

She did have one doc that dianosed her with unclassified autoimmune

disorder/mixed connective tissue disease.

Aundrea gets the butterfly rash and I think the spot on her face

last week might be what they would call a discoid rash.

She came home from the pool today with joint pain and muscle

weakness. She is snuggled up in bed and said she is " just tired " .

So far the butterfly rash hasn't come out.. A little redness but not

bad.

Maybe when I talk with the doc on Monday I will ask about doing a

repeat of her ANA. I know on our previous visit he had wanted to

run some other tests I believe to check for dermatomyitis (the

treatment was the same and we didn't have health insurance at the

time so we decided not to run the tests) We now have health ins. so

maybe its worth repeating some of the labs that were done 3 years

ago.

Thanks again for all the information. It was kind of you to take

the time to retrieve it for me.

P.S. Hope the addition of the new med works well for Nick!

Blessings,

(Aundrea 10 systemic jra)--

- In , " hburger64 " <hburger64@...> wrote:

>

> -.

>

> I am not that familiar with Lupus, although I did once have a

friend

> with discoid Lupus ( I think thats how its spelt)

>

> I have often thought of her when you talk of Drea's facial rashes.

I

> have to say I think if lupus when you talk about Drea's issues

> sometimes.

>

> Has any of the doctors ever mentioned MCTD ( Mixed Connnective

> Tissue Disorder) I have been coming across a lot about this as I

> have been researching connective tissue disorders and Nicks heart

> issue. Heres a little bit about it....

>

> What is Mixed Connective Tissue Disorder?

> Mixed Connective Tissue Disorder is an autoimmune process with

> symptoms of Scleroderma, Myositis, Systemic Lupus Erythematosus ,

> Rheumatoid Arthritis and/or other autoimmune diseases. It is a

> description of a group of symptoms occurring together. This is

> different from a diagnosis that describes the underlying process.

> It is a disorder of the immune system, which normally functions to

> protect the body against invading infections and cancers, and

> toxins. In Mixed Connective Tissue Disorder, as in other

autoimmune

> diseases parts of the complex immune system is over-active and

> produces increased amounts of abnormal antibodies that attack the

> patient's own organs.

>

> Sometimes MCTD is called Overlap Syndrome or Undifferentiated Mix

> Connective Tissue Disorder. Some writers discriminate between them

> claiming that each of these are different. Some argue MCTD is not

a

> distinct entity at all, and is just one of the forms of Lupus or

> Scleroderma.

>

> MCTD can affect many parts of the body, including the joints,

skin,

> kidneys, lungs, heart, endocrine, digestive, and nervous system,

> blood vessels which all are made up of connective tissue. There

are

> reports of psychiatric disturbances similar to those found in

Lupus.

> The signs and symptoms of MCTD differ from person to person, with

> the symptoms of either Lupus, or Scleroderma, or Myositis or other

> autoimmune disease being most prevalent. Since its manifestations

> can vary it is often misdiagnosed. The disease can range from mild

> to life threatening. It can be mild for many years, and then after

> about 20 years of having the disease a medical crisis may occur.

The

> lungs and kidneys are particularly at risk. Lungs and kidneys

> symptoms are particularly serious involvement and should be

> monitored vigilantly by both the doctor and the patient.Most

people

> have subtle signs and symptoms of the disease many years before

ever

> getting a diagnosis. They can include fingers swelling, joint and

or

> muscular pain, irritable bowel syndrome, digestive problems,

> Raynaud's symptoms (fingers turning white when cold), allergies,

> general malaise, sleep disturbances and quite frequently

> overwhelming fatigue. Sometimes the symptoms feel like the flu.

Some

> patients have frequent infections including gum infections, sore

> throats, stomach infections, and respiratory infections. Symptoms

> vary, and each person's illness can be quite different.

>

> Often a person with MCTD goes to many doctors with these small

> complaints, but often a doctor will not grasp the whole picture

> since it is very rare. Many patients are told they are depressed

and

> put on anti-depressants. Frequently the illness progresses until

> there is damage to the internal organs. It is often then that the

> diagnosis is made.

>

> Often the diagnosis is made based on the symptoms. But, there are

> several tests of autoimmune disease. Usually the first test given

is

> the ANA (anti-nuclear antibodies). This is a general test of

> autoimmune disease. A " speckled " pattern and abnormally high

results

> are found in the ANA if MCTD is present. Although in the early

> stages of MCTD, it can be negative.

>

> If the ANA is positive, additional tests will be given to identify

> the kind of autoimmune disease present. The RNP antibodies are the

> hallmark of MCTD, and will be abnormally high as well. New

Evidence

> in an article in Arthritis and Rheumatism (May 1999)demonstrates

> that antibody to RNA is a better marker for MCTD since it tracks

the

> activity of the disease. A person with this disease may have

> antibodies found in the various other autoimmune disease as well.

>

> , it might be worth reading up on some of this and question

the

> rheumy next time you talk to them? Hope this helps a little.

>

> hugs Helen and (8,systemic)

>

June 5, 2006

Hi all and thanks for the welcomes I received‹ I will reply, but have been

ill.

I relapsed Thursday night with whatever allergic thing I had the week

before‹ at least that¹s my theory. No hives,

But nausea, vomiting, metallic taste in mouth, migraine. Lasted a day.

very weird.

Anyway, briefly:

When I was about sixteen my doctor nearly lost it because suddenly I tested

positive for lupus. But then they did the test again and it wasn¹t.

Over the years I¹ve had some symptoms of it. It may be something like that

for you as well. I also have some symptoms of sjogren¹s‹ fortunately not

the dry mouth, but constant glandular swelling.

As for whether mine was really JRA or early onset‹ I did develop RF about a

year-sixteen months after diagnosis. But I didn¹t begin menstruating until

a year and a half after that, that is, two and a half years after I got the

disease, and I was about three inches away from my full height. So I¹ve

heard both versions.

Has anyone here tried orencia? My RD wants to try it. I¹m not having too

much confidence in him though because he looked me in the face and told me

we tried Remicade because enbrel wasn¹t working, when in fact we only went

to remicade because I¹m on my own insurance (cobra ran out) and enbrel was

expensive. Since this switch was less than a month ago I¹m a little

surprised he doesn¹t remember that...