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Old 12-04-2006, 02:13 AM   #1
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How long does it take for lupus to become positive?

I was wondering how long does it take for your blood to become "positive" for lupus? And can it come and go over the years until it becomes a solid + ?

 
Old 12-04-2006, 07:04 AM   #2
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Re: How long does it take for lupus to become positive?

Dear Kitten Paws, Much of what I divined from my doctors' remarks over the years re: blood work and lupus, was inaccurate. Their remarks were cryptic & didn't convey the broad picture. And they said so little, to keep me out of their hair, I suspect.

Try reading again the "sticky post" with the ACR criteria. You must meet at least 4 of these 11 AT SOME TIME, but not necessarily all at once, to be Dx'ed with *systemic* lupus. I bet many drs. insist on seeing your "matches" with their very own eyes. So if your problems come & go, or if you switch drs. al lot, important info can get buried.

LESSER lupus forms (meaning not "systemic") also dovetail into this list. That is, you don't have to meet "4" to have some form of lupus---you have some LESSER FORM. For example, with discoid lupus (DLE), you could be photosensitive, tired & achey, and get scarring lesions; and your odds of positive ANA are only about 50%. In subacute cutaneous LE (SCLE), which is fairly rare, I think, many people do meet 4 or more, but they typically get one of two other rashes instead of the butterfly, and ANA is positive maybe only 2/3 of the time, and anti-Ro is the prevalent autoantibody.

Only two items in the list are considered "highly specific" to SYSTEMIC lupus: anti-ds-DNA or anti-Sm autoantibodies. If these are present, they are pretty much "presumptive". Can you have lupus without these? Yes---but things are less clear & can slow down to a crawl, is my best guess. In his lupus hardcover, Dr. Wallace actually lists SIXTEEN antibodies & blood complement abnormalities seen in SLE. (But he's SUCH a specialist. I bet most drs. don't know fathom these nuances.)

The more generic ANA test is not definitive. Why? It can be positive in various diseases, or due to a family tendency, or because of a passing virus. So while ANA is a useful clue for SYSTEMIC lupus, it's NOT "diagnostic" of SLE.

"Kinda sorta" people can stay the same for years. Or end up being Dx'ed with a "lesser lupus", like DLE, SCLE, etc. Or end up being Dx'ed with an autoimmune that's in the same ballpark, like MCTD (Mixed Connective Tissue Disease), UCTD (Undifferentiated Connective Tissue Disease), RA (Rheumatoid Arthritis), etc. Or become asymptomatic of everything in this ballpark.

Dr. Daniel Wallace writes the best summary I've read, in his lupus hardcover, in the chapter titled "Is It Really Lupus?" (is in most libraries & bookstores).

I turned out to have SCLE, one of the variant lesser forms. My anti-Ro was positive but ANA was negative. This is a good example of how someone can dovetail into the ACR criteria, i.e., to have lupus but not the classic SLE kind.

Kittenpaws, can you refresh us on where do you stand? What are you 100% sure of? What drs. have you seen? How long has it been going on? (Etc.?) With my best wishes! Bye for now, Vee

 
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Old 12-04-2006, 12:16 PM   #3
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Re: How long does it take for lupus to become positive?

I just wanted a yes or a no, ive been through this mumbo jumbo for 2 years and keep getting more symptoms, last i checked i had at least 7 of the 11 critera and a bunch on the "none official" list (i forget what doctor it was from) anyway.. i was just wondering, as ive had 2 positive auto immune tests (i dont know what...they keep me in the dark) and my last one was "negative" but she wont tell me what she tested for and im basically shut out. So im lookin for a new rheumatologist. Ive been through 5 GP, 1 GI, 1 rheumy, 1 Neuro who ran out on me in the beginning of my appointment, and a few others. and im still searching for someone who will listen. At the moment my symptoms span at least a full page that i gave my doc a year ago and then some...

 
Old 12-04-2006, 05:07 PM   #4
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Re: How long does it take for lupus to become positive?

Kittenpaws, I had to call my GP every day for over 2 wks. to get the lab results I needed---but they MUST give them to you, if you ask. Don't be shy!

Also, you may need someone sufficiently sophisticated & cutting-edge to recognize the various "faces" of lupus (if you have it in some form, or something close, that is). My mistake was to have a "subset", with "minority" autoantibodies. I had a characteristic rash for 8 years, and went to all sorts of drs. during that timeframe. I wish I'd ramped up sooner...

I really hope you get those results & try again soon. Let us know how you're making out, OK? All my best, Vee

 
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