Re: Urticaria-lab results not valid with remissions (?)

[Guest guest]

,

I have never been hive-free long enough for the doctors to draw blood in

that state. I did have a positive histamine test and my ANA which had been

negative turned " borderline " . I have a gamma globulin deficiency and an

autoimmune thyroiditis. I also had a biopsy of my hives which showed a

lymphocytic vasculitis. Allergy testing is not possible because the hives

will lead to false positives. No one ever mentioned not doing ANA testing

due to the presence of hives. I do understand, however, your wanting to

have the hives when you go to the doctor so they can fully appreciate how

bad it is.

I have a fear of getting lupus one day also but have to think positive.

Good luck.

Rhea

Urticaria-lab results not valid with remissions (?)

> Hi everyone:

>

> I was in the bookstore the other day and, as usual, made a beeline to the

> medical section and did a little reading again to further my knowledge

> about lab tests.

>

> As some of you might have already been through, when you have had

> urticaria for a prolonged period of time, the doctors might test for

> autoimmune disorders--collagen diseases/lupus, etc. Well, with my

> previously positive ANA and current positive C4 factor, of course I was

> concerned it was lupus, though the specialist still claims it is not. I

> just read that if you happen to be in remission when they draw the labs,

> some of those test results might not show up as positive, like the anti

> double-stranded DNA test for lupus. I didn't realize I was in remission

> when I got my appointment with the rheumatologist. I purposely stopped

> my Zyrtec 2 days prior to the visit so he could see the rash, because

> that's how long it took me to breakout, get fevers, etc. Naturally, the

> hives didn't show up and still haven't so far. I have a followup visit

> on August 31st, so I will voice that concern to him. Just wondered if

> anyone elses doctors ever mentioned about waiting until you actually have

> hives before drawing blood? I'm just sort of concerned because they

> wasted so much time sending me to other specialists and nobody ever

> ordered the major blood panel like the rheumatologist. I know the

> doctors meant well, but now I'm scared I could be walking around with

> something more serious than autoimmune urticaria, as I have been

> diagnosed with. Just wish it was only the gas leak in the house that

> caused all this, but I am prepared for the word " no. " I do tend to

> catastrophize, but would appreciate any support/opinions before my

> appointment. Thank you, and I wish all of you the best.

>

> ________________________________________________________________

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>

>

> This list is in the service of those who suffer from Chronic Urticaria

(hives). We strive to support and lift each other as a worldwide

cyber-family.

>

> We share whatever needs to be shared to help one another in our struggle

with Chronic Urticria.

>

> Any posting that is off the main topic of Chronic Urticaria, we post with

a prefix of NCU -. This is done out of respect for those who do not wish to

read such postings.

>

[Guest guest]

,

I have never been hive-free long enough for the doctors to draw blood in

that state. I did have a positive histamine test and my ANA which had been

negative turned " borderline " . I have a gamma globulin deficiency and an

autoimmune thyroiditis. I also had a biopsy of my hives which showed a

lymphocytic vasculitis. Allergy testing is not possible because the hives

will lead to false positives. No one ever mentioned not doing ANA testing

due to the presence of hives. I do understand, however, your wanting to

have the hives when you go to the doctor so they can fully appreciate how

bad it is.

I have a fear of getting lupus one day also but have to think positive.

Good luck.

Rhea

Urticaria-lab results not valid with remissions (?)

> Hi everyone:

>

> I was in the bookstore the other day and, as usual, made a beeline to the

> medical section and did a little reading again to further my knowledge

> about lab tests.

>

> As some of you might have already been through, when you have had

> urticaria for a prolonged period of time, the doctors might test for

> autoimmune disorders--collagen diseases/lupus, etc. Well, with my

> previously positive ANA and current positive C4 factor, of course I was

> concerned it was lupus, though the specialist still claims it is not. I

> just read that if you happen to be in remission when they draw the labs,

> some of those test results might not show up as positive, like the anti

> double-stranded DNA test for lupus. I didn't realize I was in remission

> when I got my appointment with the rheumatologist. I purposely stopped

> my Zyrtec 2 days prior to the visit so he could see the rash, because

> that's how long it took me to breakout, get fevers, etc. Naturally, the

> hives didn't show up and still haven't so far. I have a followup visit

> on August 31st, so I will voice that concern to him. Just wondered if

> anyone elses doctors ever mentioned about waiting until you actually have

> hives before drawing blood? I'm just sort of concerned because they

> wasted so much time sending me to other specialists and nobody ever

> ordered the major blood panel like the rheumatologist. I know the

> doctors meant well, but now I'm scared I could be walking around with

> something more serious than autoimmune urticaria, as I have been

> diagnosed with. Just wish it was only the gas leak in the house that

> caused all this, but I am prepared for the word " no. " I do tend to

> catastrophize, but would appreciate any support/opinions before my

> appointment. Thank you, and I wish all of you the best.

>

> ________________________________________________________________

> YOU'RE PAYING TOO MUCH FOR THE INTERNET!

> Juno now offers FREE Internet Access!

> Try it today - there's no risk! For your FREE software, visit:

> http://dl.www.juno.com/get/tagj.

>

>

>

> This list is in the service of those who suffer from Chronic Urticaria

(hives). We strive to support and lift each other as a worldwide

cyber-family.

>

> We share whatever needs to be shared to help one another in our struggle

with Chronic Urticria.

>

> Any posting that is off the main topic of Chronic Urticaria, we post with

a prefix of NCU -. This is done out of respect for those who do not wish to

read such postings.

>

[Guest guest]

Dear ,

I wanted so bad to know WHY I had urticaria. I understand the strong desire

to FIND OUT. Even if the answer is Lupus.

First, I don't stop my meds anymore so the MD can " see " and believe me. If

my MD is so uninformed that I have to suffer to get treatment, then I get

another MD. It's been a long time with my current MD, but I need to remember

that I went through 7 before I found this one.

If you are like me, you just have urticaria.......and we'll never, ever know

why. period.

But, I can tell you, that since I have accepted this, my life is richer than

I ever thought possilbe.

Blessings, Judy

[Guest guest]

Dear Judy:

Thanks for your reply. I know I should just accept what I have. I just

get in a slump once in awhile, over-analyzing , etc. My dad gave me a

quote that I thought I'd share with you guys:

" Yesterday is history

Tomorrow is a mystery.

Today is a gift.

That's why it's called

THE PRESENT. "

Words I will try to live by...Thanks again for your thoughts, Judy.

________________________________________________________________

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[Guest guest]

,

I am a hiver and also a facilitator for a lupus support group in Michigan. I

have tested positive for some of the lupus blood tests in the past but the

docs usually don't label you with lupus unless something comes up that is

sooooooo obvious that it will be a sure diagnosis.

Four members of our group started hiving from 4 - 8 years before their blood

tests showed certain signs of lupus. I wouldn't discount it and as long as

you keep mentioning it, they will keep record of your symptoms and see if the

story will unfold. If you do you lupus, you will be first put on prednisone

anyway. Many of the meds are the same as autoimmune urticaria except for the

anti-histamines.

The thing to watch out for is any lung or kidney involvement. I have blood

in the urine everytime I have a crop of large hives or angioedema--the doc is

keeping an eye on this to relate to possible lupus symptoms.

Just a note-- I had seen an immunologist at UofM last month and didn't have

hives that day except for a few small purplish ones that look like bruises.

However, he did recognize the angioedema from the total body puffiness and by

physical examination. He noted that angioedema is not just the face, lips,

etc. That most chronic angioedema doesn't make hives on the surface at

all--that the soft tissues inflame and can cause many problems because of the

pressure put on the body organs. Soooo, that is why the fatigue, etc. even

when there is no signs present. (But again, those are also the exact same

symptoms of people with lupus). Go figure.

Keep the faith and keep investigating,

J.