Re: , Lupus

[Guest guest]

,

Were your doctors able to identify Lupus from lab tests? I was really

struck by the similarity in the skin problems you describe and some of

those I've had over the years. The first time, my eyelids began to swell

and then peel until they were peeling from eye to eye, across the bridge of

my nose. It lasted for weeks but finally went away and the Dermatologist

assumed it was because of one of the creams she'd prescribed. After that,

seemingly unrelated, I became hypersensitive to sun exposure and would

develop a fine red rash anywhere my skin was exposed to the sun. Using a

make up brush (like for blush) would also cause a rash and so would a hot

shower or even my husband's whiskers. I was prescribed Hydroxyzine and

that seemed to control it but if I forgot for even one day, it would happen

again.

Then, we moved to Europe which was more stressful than anyone can imagine.

My hands began to swell, turn bright red and the skin began peeling. I

decided it was caused by Swiss dishwashing detergent. A Swiss doctor tried

to treat it, but like the eyelid rash, it went away in it's own time.

Three years later we returned to the US, first time we'd been back in all

that time. That was when I learned that my Mom was terribly ill and had

been more or less hiding it from me. The first week we were back in the

States, I woke up one morning with huge, hard red welts (hives) on my back

and down the insides of my arms. I didn't even see a doctor. Instead, I

took Benadryl and it went away after a few days.

Then, in 1996 I noticed what looked like a tiny blister on my lower lip.

It was shiny and almost translucent. Next, I developed similar " blisters "

on the centers of the palms of both hands and the blisters spread until

both palms were bright red and it looked like I had some dread skin disease

(to me) like leprosy or something. I even had a couple of lesions inside

my mouth. I saw a Dermotologist for months and even had a lesion biopsied.

It was unresponsive to all medications but eventually disappeared, though I

still have reddish shadows where the blisters used to be.

Finally, last July when my pred was being reduced and got down to 10 mgs. I

woke up one morning with the most horrible giant hives all over my back,

chest, abdomen and insides of my arms down to the elbow. They were vivid

red, hard, itched ferociously and as large as saucers. Since I was already

under treatment, this time I got some attention and the hives went away

after a few days of whatever that new allergy drug is.

In between all of this, which started in about 1978, I had mysterious joint

swelling. Wrists and hands one time, then a knee, then both ankles, then

both hands. No pattern and not close together. Just off and on over the

next 20 years. I've been tested over and over for Lupus and it's always

negative. Now, I'm not sure if it makes any difference whether it's Lupus

or not, since it's established that I do have AIH. I was just struck by

the remarkable similarity between what I've experienced and what you've

gone through.

Hope I haven't bored everyone talking about this, but if any of it rings a

bell, I'd be curious to hear about it. Question is, even if we know what

is the probable cause, what if anything can or will be done about it?

Take care,

Geri

[Guest guest]

Hi Geri,

Doctors went round and round with me over the lupus bit. What is important

is if you test positive on several of the lupus criteria over time. Almost

no lupus patient presents positive on 5 of the 7 criteria at any one time.

My rheumatologist based my diagnosis on the patterns he saw over time. It is

good to know because although treatment is similar, day to day life is

usually different. For example, I have to keep my stress level way down or

there is the potential for a flare.

The types of skin reactions and fleeting joint pain and things you have had

can be attributed to lupus. They can also be attributed to other autoimmune

illnesses, including the AIH. I don't know if you read Jody's post on here

about medicine getting to compartmentalized, but that is part of the problem

with all these different doctors and different diagnoses we get. I have been

diagnosed as AIH, Hypothyroid, Lupus and Celiac. The celiac is the only one

that had a definite, clear cut diagnosis - they found the damage in my small

bowel. The AIH came about because of liver problems of unknown source, the

lupus because of all the other things on top of the liver problems and the

thyroid because of an autoimmune response against my thyroid. You may never

get a truly clear picture of what is going on. I realize that you are not

really open to changing things, but for me the best thing was to get things

calmed down in my life and really pay attention to what my body was doing.

That was when I began to get better. Autoimmune stuff is hard. Hope this

helps a little. I will hunt up the lupus criteria for you and post it so you

can compare your test results to the list.