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Old 01-30-2012, 03:18 PM   #1
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New to this and the Testing process HELP!!!


Hi everyone! as of recent I was sent from doctor to doctor as my profile states and have landed at the Rheum. Door step. We have talked and she has done a complete exam and ran some initial tests to rule out a few factors and to figure out just what seems to be going on. How ever in finding that what I had initially visited her for is not an issue (Thank God) we have found that I have had a pretty high positive test for Lupus. She has since instructed me against the use of ibuprofen and has prescribed an anti-inflammatory medication pending some more test results. Which brings me to the question of.... what are these tests for and are they "Lupus specifics"? If there is anyone who may be able to help.... PLEASE?

[U]Tests[U]
C3,C4&CH50(complement levels)
Anti-Smith Ab (not smooth)
DS DNA Ab
Sedimentation rate ESR

 
Old 01-31-2012, 03:16 PM   #2
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VeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB User
Re: New to this and the Testing process HELP!!!

MommaTina, hi & welcome. I'm just a (dumb) patient, so please read in that light, OK?

Because there actually isn't any single test for lupus, you should first read the standard diagnostic criteria, which you can find in the "sticky posts" (permanent info posts) at the very top of the thread list. You'll see 11 criteria. To be Dx'ed with the systemic form of lupus (SLE), you generally must meet 4 or more of the 11, but not necessarily simultaneously, meaning this can happen over time.

Moving to the tests... In lupus, the immune system mistakenly creates so-called "autoantibodies" that attack our own cell matter. While many autoantibodies are seen in lupus, DS DNA and anti-Smith are two of the most prominent. Since both are considered very "specific" to lupus, because they aren't seen in other conditions, both appear in one of the criteria. I think a "positive" for either adds a LOT of weight to a lupus Dx.

Sed rate (ESR) is often elevated in inflammatory conditions, like lupus, rheumatoid arthtis, and the like.

Complements are proteins that inflammation depletes, thus those complement levels can go low in people with chronic inflammatory conditions like lupus.

This only skims the surface, but I hope it helps you get a small toehold on this complex subject. Post more soon, OK? Meanwhile, sending best wishes to you & hopes that the anti-inflammatory is helping you! Sincerely, Vee

 
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Old 01-31-2012, 05:34 PM   #3
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MommaTina83 HB User
Re: New to this and the Testing process HELP!!!

Thank you VeeJ, I appreciate the response, we have tested for other areas in which inflammation plays a role and Im glad to say that those areas have tested negative , which is why they are now placing orders for the above stated tests. I have been doing some research and have found that I have atleast 4 of 11 criteria that helps to dx lupus and have had these criteria for a number of years alot of which began as I became pubescent (no surprise there right?) the anti-inflammatory meds seem to be working when I use them in combination with the pain meds that I was also prescribed, atleast for now. I am glad that you replied, I know that you are not a phys. but sometimes I feel that only an experienced patient such as yourself can better explain answers to questions rather than doctors who tend to use alot of medical terminology. Again the site I visit is for the Lupus foundation of America (www.lupus.org) and is very informational but can also be vague when it comes to explaining exactly what certain tests are for and I thought I was understanding that some of these tests were very "lupus specific" but figured that asking around to those whom have already had these tests would just further satisfy what seems like my obsession to obtain information at this point. Thanks Again!

 
Old 02-01-2012, 01:12 AM   #4
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Re: New to this and the Testing process HELP!!!

Hi, again, MT. Your researching is smart, esp. given how many years of up's and down's you've had! (Me, too, from early teenage onward). I had my eyes opened by borrowing library books: that's where you find the most detail by far---so, you might do that, too.

Re: autoantibodies being "specific" vs. not: you're asking FAR better questions than I did! When I first read those criteria, I didn't "read between the lines" and divine that OTHER autoantibodies are possible in lupus, albeit less "specific" ones. Well, dumb me! I ended up being in the very small subgroup with anti-Ro-only... worse, with negative ANA. Had I realized that, I'd have ramped up to a better rheumatologist sooner.

I think C-reactive protein (CRP) is often positive in lupus & RA. Do you see that test on any of your labs? (BTW, RA has its own criteria, equally layered & complex.) Anyway, I hope you learn more soon. Let us know how it's going. Sending more warm wishes, Vee

 
Old 02-01-2012, 03:58 AM   #5
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Re: New to this and the Testing process HELP!!!

P.S. And did you read the "sticky" with the "alternative criteria"? Knocked my socks off---for me, autobiographical. Also interesting to me was that only two doctors, of the gazillion I saw over 4+ decades, asked questions that spoke to that list. So I concluded that not very many drs. "get" lupus. Stay in touch, best wishes, bye, Vee

 
Old 02-01-2012, 02:02 PM   #6
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MommaTina83 HB User
Re: New to this and the Testing process HELP!!!

I will def. have to read that "sticky" and as far as the CRP she may have done that test last time, I do try to keep up with the doctor and make sure i write a list of tests I have or am having done in a notebook along with symptoms that I have noticed weather its today last week or a couple years ago. As far as having a rheumy who knows her stuff... I believe for now shes right where I need to be she has picked up on things that no other phys. has noticed right down to the discolored patched of skin that are on my knuckles which were thought initially to be that of psoriasis, she also accepted my list of current symptoms with open arms when presented to her on the very first visit and asked about the "lupus" mask almost like it was second nature to her. For now I will trust that I am where I'm supposed to be treatment wise and until there is room to doubt thats where I'll be I feel very lucky to be so confident with a physician after only two visits! I will revisit her on the 22nd and just had the labs drawn this morning, hopefully we will know more via the appointment! The positive point of the lab draw was that I am indeed in the middle of a recent "flare" so hopefully this will bring more light to the situation and further help the diagnosis process Thanks again, take care as well, and I'll be posting soon!

 
Old 02-02-2012, 03:11 PM   #7
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Re: New to this and the Testing process HELP!!!

MommaTina, I don't know whether psoriasis often co-exists with lupus, but you could ask your rheumatologist, if you're curious, that is.

I know a man with a rarer autoimmune in which psoriasis is a key feature: psoriatic arthritis. His is severe: psoriasis on hands, feet & ankles; awful pain & severe bone erosion; swollen appendages (sausage-like).

My metro specialists said there are something like 16,000 skin conditions. I may have forgotten the #, but remember it was huge beyond belief. So if you ever feel you MUST further define your skin problems, you could ask to have a skin biopsy done by a dermatologist or dermatopathologist.

But with your new rheumatologist, it sounds like you're in good hands, so above are only thoughts for some "break the glass" scenario---which hopefully you'll never arrive at! I hope your upcoming appt. brings you answers, or gets you much closer. Sending my best, Vee

 
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