HELP Lupus Panniculitis? Prolastin/IVIG

[Guest guest]

Hi I need some help if you have lupus panniculitis, I need information

if anyone has had prolastin treatments or IVIG treatments. I guess

this is sort of a last resort try to help me with treatment. I have

panniculitis practically everywhere in my body I am on oxygen which

family dr said had he been my family dr I would of been on oxygen

years ago like in 2002. I am too upset to get into much right now. I

need contact with panniculitis prolastin IVIG treatment people.

THanks ~Jan

[Guest guest]

Jan, I do not have any experience with what you are describing, but I want you

to know I have put you on my prayer list.

I've had to be on oxygen briefly, when I had pneumonia. Not fun, but it's good

if it helps.

Still--bummer!

Love, Joan

---- Jan wrote:

> Hi I need some help if you have lupus panniculitis, I need information

> if anyone has had prolastin treatments or IVIG treatments. I guess

> this is sort of a last resort try to help me with treatment. I have

> panniculitis practically everywhere in my body I am on oxygen which

> family dr said had he been my family dr I would of been on oxygen

> years ago like in 2002. I am too upset to get into much right now. I

> need contact with panniculitis prolastin IVIG treatment people.

> THanks ~Jan

>

>

>

>

[Guest guest]

i was also going to suggest this, but also a few other things. i

had postive ana along with postive c-nca.

here is some quote from web md:

An antinuclear antibody (ANA) test measures the amount and pattern

of abnormal antibody that work against the body's tissues

(autoantibody). Everyone has a small amount of autoantibody, but

about 5% of people have a larger amount. About half of these 5% have

an autoimmune disease, such as systemic lupus erythematosus or

rheumatoid arthritis. An ANA test alone cannot diagnose a specific

disease. It is used in combination with an evaluation of symptoms

and other tests.

The body's immune system normally attacks and destroys foreign

substances such as bacteria and viruses. However, in disorders known

as autoimmune diseases, the immune system attacks and destroys the

body's normal tissues. When a person has an autoimmune disease, the

immune system produces antibodies that attach to the body's own

cells as though they were foreign substances, often causing them to

be damaged or destroyed. A thorough medical history, physical

examination, and other tests besides an ANA test are needed confirm

a suspected autoimmune disease.

Why It Is Done

A test for antinuclear antibodies (ANA) is done to help diagnose

conditions that include:

Systemic lupus erythematosus (SLE).

Rheumatoid arthritis

Sjögren's syndrome.

Scleroderma.

Hashimoto's thyroid disease.

A reaction to a medication

now, i have crohns disease and pg, so go figure! this test narrows

down the dx from the " universe " to " this earth " . still a vast

amount of investigation your doc will need to do. likely he will go

to the " guinee pig mode " and start trialing meds on you to see how

you react. unfortunately, with autoimmune diseases, this is the

only thing that helps to dx these conditions. prednosone pretty

much treats all of it, so be careful about him rx'ing you pred and

walking away. kind of like telling someone with a belly ache he has

ibs when he really has ibd (been there, done that, have t-shirt).

doc needs to do further investigation, and i mean prolly a lot of

testing, i mean.........lots! if he is not moving to this mode, you

need to have a sit down chat with him. the " guinee pig mode " just

masks the condition and it makes it more difficult to dx. don't

know what kind of doc you go to, but he needs to refer you to some

specialized help. in fact, i strongly encourage you to go to a

teaching medical center. hope there is one near you. going to a

teaching medical center ~~~~ " PRICELESS " !~~~~~

sorry rebecca, sometimes i get on one of these kicks and have to

start kicking the general doctor profession.

love,

jeff

> > Well, I don't remember if I wrote to tell you or not, but my ANA

blood test came back positive. Unfortunately, it still doesn't tell

me what I have. My symptoms are: dry eyes, cotton mouth, kidney

pain (no cause found), enlarged spleen (no cause found), low red

blood cell count, high white blood cell count, photosensitivity,

chronic EN, muscle weakness, some nausea off and on, high fevers off

and on, extreme fatigue, chronic UTI's, chronic miscarriages, joint

pain, chest pain off and on, flu-like symptoms and I've recently

noticed its harder to concentrate and harder to remember things - I

used to have a great memory. This sounds like lupus or sjogrens to

me rom the research I've done, but any one else have any suggestions.

> > Tawnya, " IdioEN " '97

>

[Guest guest]

well, i try.

love,

grampy

>

> Hi Jeff,

> That was another GREAT ANSWER!!

>

> <<sorry rebecca, sometimes i get on one of these kicks and have to

>

> start kicking the general doctor profession.>>

>

> Actually the more I deal with doctors the more I see how

> very hard it is to find good ones. They all go to med

> school, and they get the degree, but who knows if they

> barely squeeked by or were at the top of their class?

>

> Doctors at Teaching Medical Centers are the Top Docs.

> They like a challenge and don't groan when you return

> sicker than before.

>

> General docs are ok for 90% of the population, but we

> " zebras " need the BEST!

> Love,

>

> Idio. EN '68

> Oh, yeah, adding your post to our Files--as usual,

> Thanks, Granddad (heheheh)!!

>

>

>

>

>

>

> You can help Erythema Nodosum Research. Just go to

www.goodsearch.com and under the I'm Supporting section enter

Erythema Nodosum Research Fund. Every time you use Goodsearch

to search, a penny will be donated to EN Research. So sign up

today, and be sure to tell your friends, family and co-workers.

Let's find a cure for Erythema Nodosum!

>

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