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Old 11-18-2008, 07:18 AM   #1
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Question Queastion About Lupus Test

hello

I was wondering about a lupus test I had several years ago.
The test I had was called lupus anti-coagulant.
It came out as borderline positive.My dr. back then said I did not have lupus.

Should I be retested for lupus?

I have other health issues going on tooso I don't know if my symptoms could be from possible lupus.My current dr. did a C reactive protein test which came out in normal range so he said I probably don't have lupus,but he wasn't sure

thanks much
Scout

 
Old 11-18-2008, 02:31 PM   #2
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Re: Queastion About Lupus Test

Hello, Scout. Odd as this will sound, the "lupus anticoagulant" test isn't for lupus. Instead, along with several other tests, it's used to screen for a blood clotting disorder called Antiphospholipid Syndrome (APS). There's a sticky post ( = permanent info post) on APS at the top of the thread list. FYI, APS is seen in people with lupus, but it can also exist "standalone".

As for lupus tests: well, there isn't any single test that proves or disproves lupus---unfortunately! The other two "sticky posts" discuss various tests, symptoms, and criteria used in diagnosing lupus. Once you read the ACR criteria, you'll see that some are skin problems, some are systemic problems, and the remainder are lab criteria. You must meet at least 4 of the 11 criteria, but not necessarily at the same time, to support a Dx of systemic lupus (SLE). But there are lesser variants, like discoid lupus (DLE) and subacute cutaneous lupus (SCLE), for which you may meet fewer than 4.

Those lab criteria are really confusing, in my book! Only two autoantibodies are "specific" enough to make the list: anti-ds-DNA and anti-Sm. But there are actually many more that can be seen in lupus, not included, because they can also exist in conditions OTHER than lupus. I'm a good example of this concept: I was Dx'ed based (partly) on the anti-Ro autoantibody, which is seen both in lupus and in Sjogren's Syndrome.

As for whether you should be tested again for lupus & for APS: are the health problems you mention in the ballpark of the things listed in the "stickies"? If so, I think you ought to be retested, preferably by a rheumatologist (as opposed to a GP, that is). Many people are tested repeatedly, which is understandable when you consider that some of the lab results rise & fall with flares, so timing is important. Also, some people "evolve" slowly.

I hope you post again soon. Bye, and best wishes, Vee

Last edited by VeeJ; 11-18-2008 at 02:35 PM. Reason: spelling

 
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Old 11-20-2008, 03:49 PM   #3
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Re: Queastion About Lupus Test

hi VeeJ

Wow you really know your lupus stuff!!!!Thanks so much for explaining that lupus anti-coagulant test to me.I don't know that much about lupus,but I like learning about it as well as other health topics(haha...I need to get a life!but having not so good health has pointed me in the direction of educating myself on things that concern my health.)I know many people that are doing the same thing,because the drs.(not all,but it seems quite a few!!!!)seem to not really care about their patients...or they are grossly under-educated.

I have so many conditions going on with my health....and my old hematologist said I'd probably end up having a connective tissue disorder in a couple years(and she said that in 2000!).

I have an occult(hidden) B12 complicated deficiency(I always get the "rare" kind of everything!)So I get monthly B12 injections.

I also have a 6mm cerebellum herniation(but they said it's not a Chiari Malformation!....just "tonsillar ectopia"...another "rare" thing....)

As far as lupus symptoms the only rash I had was a "red" rash that was onh my face...upper cheeks andacross my nose...I think it looked more like a "sinus-related" rash.

I usually post on the brain and nervous system dosorder board(lots of Chiari people there,but I don't have the typical Chiari symptoms..like the headache from coughing,sneezing,talking loud,laughing......),but I guess I am glad that "maybe" mine isn't like the typical Chiari,because that's really scary!I'm hoping mine is just some kind of inflammation.

Well I've probably confused you with all this medical talk...didn't mean to!I just wanted to say thank you for your great posting....you certainly are very helpful!

It's great to meet you!

take care~

Scout

 
Old 11-20-2008, 04:32 PM   #4
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Re: Queastion About Lupus Test

Scout, I think you're smart to read & talk. When my local drs. first used the word "lupus" to me, I drove (trembling) to the nearest public library. There I borrowed two hardcovers written for patients, one by Dr. Daniel Wallace, and the other by Dr. Robert Lahita. The Wallace in particular contained charts, chaper headers, an index at the back, etc. that made the huge array of info easier to find & mull over. FYI, he also covers antiphospholipid syndrome (APS), and various "close cousins" to lupus, like scleroderma, RA, MCTD, UCTD, myositis, etc.

I recommend you leaf thru thsse books, especially given the facial rash you mentioned in your last post.

I was B-12 deficient also, for which my local doctors told me to TAKE VITAMINS. (Ha! You can guess THAT didn't help!) I also had GI misery, urinary problems (incl. stones), migraines, fatigue, joint & shin pain, elevated sed rate, depressed WBC, wildly prolonged periods, weight & hair loss, and nonscarring targetlike rashes for many years on my upper arms & back. My rashes were Dx'ed as SCLE (subacute cutaneous lupus erythematosus), and I eventually tested positive for anti-Ro (which is seen in lupus and in Sjogren's Syndrome). Plaquenil & sun avoidance have helped me hugely.

Now that you found us, stay in touch with us here, OK? All my best, Vee

Last edited by VeeJ; 11-20-2008 at 04:50 PM. Reason: added something

 
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