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taffylinden

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 #1 

As I understand it, the famous--or infamous--checklist of lupus symptoms was developed from the most common symptoms of lupus patients. If true, that's not the most scientific means of constructing a set of criteria for a disease, but whatever. My dermatologist says that extra "capillary loops in the proximal nail fold" (the base of the nail) is common in SLE. I understand that it can mean mixed connective tissue disorder or other things, but then, Raynaud's is on that list of criteria, and it's not necessarily a lupus symptom. So why isn't this on the list of criteria?

I think about the constellation of symptoms of lupus and how it varies from person to person, and I think about people like me, who wait decades for a diagnosis, and it seems we should be doing better at diagnosing this than we are. Wouldn't more criteria help?


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 #2 
Taffy, you have to keep in mind that lupus is the great mimicker. There are between 60-80 different AI's out that and lupus mimics most of them. It is sad that it takes some people so long to get a dx. I was lucky to get one real quick but I was also very sick and had a doctor that had known me for years .

You did get your dx right? and you are on the right meds? How are you holding up? I live in California and we have one storm after another which we need the rain but now it's really cold which is making getting around even more difficult

I think more attention or awareness needs to be made regarding lupus. I wear my lupus t-shirt out when ever possible and when we went on vacation I had my lupus shirt on the back of my power chair and people came up to me and did ask me about lupus. It was my chance to explain about lupus and why I had to be in a power chair.

Anyway, I will get off my soap box for now take care and do not be a stranger.

DeAnna

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Raglet

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 #3 
As far as I know the list does not contain the most common symptoms of lupus. It contains things that distinguish lupus from other diseases, so if an item occurs in other diseases it will not make it on to the list as it doesn't necessarily mean a person has lupus. They could have some other related disease. So there are all sorts of things that happen with lupus that aren't on the list. This is just my understanding of it - but then I have never really worried about what is on the list, and I just listen to what my rheumie says. 
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taffylinden

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 #4 
Thanks, Raglet. That is definitely not what I've been told. Anemia, for instance, can be caused by a huge spectrum of diseases or can appear on its own. Arthritis also can be but is not necessarily a symptom of lupus.

This is from Wikipedia, but I've seen the same information elsewhere: 

"The American College of Rheumatology (ACR) established eleven criteria in 1982,[56] which were revised in 1997[57] as a classificatory instrument to operationalise the definition of SLE in clinical trials. They were not intended to be used to diagnose individuals and do not do well in that capacity." 

 This is what I find confusing: if they're just for determining which individuals would be appropriate subjects for clinical studies, why do I see this list all over the Internet and in print sources, with the caution you need to have 4 or more of these symptoms to be diagnosed with lupus?
DeBartolo

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Quote:
Originally Posted by taffylinden


This is what I find confusing: if they're just for determining which individuals would be appropriate subjects for clinical studies, why do I see this list all over the Internet and in print sources, with the caution you need to have 4 or more of these symptoms to be diagnosed with lupus?


because most everyone wants simple answers to complex problems, would be my guess.

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Cakelady

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There is a reason lupus is the "cruel mystery" There is not one test that says YOU HAVE LUPUS it is critical that you have a good doctor. It's not what you want to hear but it's reality. It's like Anthony said most people want simple answers but when it comes to lupus there really is no simple answers. How lupus affects one person could affect another person differently.
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Raglet

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 #7 
But anemia would be less likely to occur with say rheumatoid arthritis or sjogrens, which are some of the of the diseases that lupus needs to be differentiated against. So it depends on how wide you cast your net. And the type of anemia that occurs with lupus is an autoimmune anemia, not iron deficiency anemia, or pernicious anemia, or anemia caused by low b vitamin levels etc. There are many different types of anemia, but the autoimmune type of anemia occurs in a much more limited number of conditions.

At the end of the day does it really matter? Your rheumie will do the dx, based on both the clinical picture and the lab results.

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taffylinden

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 #8 
Excellent points! Thank you! Anthony, I especially like yours.

It does matter to me because I feel bad for all the people who have lupus but who must wait for 10 or 20 years for a diagnosis. As my dermatologist said, the treatment doesn't depend on the diagnosis, but as we lupus patients know, getting a diagnosis is a relief. Nobody should have that long to find out what is causing them misery.

I know lupus is an incredibly complex disease. My brother works for a major pharmaceutical company, and that complexity plus the fact relatively few people are diagnosed with it makes lupus unattractive to drug companies and researchers: they won't make enough on the drug or the test to offset the enormous R&D costs. I get that.

Still, it seems to me that if we don't have a definitive test for lupus, the criteria used to determine if a patient has lupus should be expanded, and the combination of symptoms should be the key to the diagnosis. Even auto-immune anemia, AIHA, is not only not specific to lupus, it isn't necessarily caused by an autoimmune disorder, or in fact, any disorder at all. In half the cases, it's primary--not caused by any other diseases. In the other half, it might be caused by certain infections, or it could be caused by ulcerative colitis, scleroderma, or SLE, or by leukemia. So why not add lupus chilblains, those extra capillary loops, and other symptoms to the list of diagnostic criteria?

I see my rheumatologist in a few weeks. I'll ask him about it. I know I can't shorten the dx time for undiagnosed lupus patients, but if I can learn enough about why the criteria is chosen, maybe I can better help someone who's stuck in the struggle to figure out what the heck is going on. 
DeBartolo

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 #9 
"So why not add lupus chilblains, those extra capillary loops, and other symptoms to the list of diagnostic criteria?"

hear what you’re saying taffy & fully understand how frustrating the situation is….on the previous board, read literally 100s of stories from women who had been called crazy for an entire decade before they got a DX.

but where do you want to draw the symptom line?

if every possible/potential manifestation were included in a list of diagnostic criteria, that list would be longer than the one santa keeps on bad boys.

they don’t call lupus ‘The Disease with a Thousand Faces’ for na-da.

but think the basic problem is this — lupus isn’t really a single disease - it’s a basket of interrelated conditions, each w/ their own symptoms….that greatly complicates things

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taffylinden

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 #10 
That is SO true, DeBartolo! I guess I'll always be confused about some lupus diagnostic stuff. For instance, I now chilblains lupus, which I have, is a rare condition, but there is no other disease that causes this. Doctors can determine the difference between regular chilblains and lupus chilblains. It's such a definitive sign, you'd think it would make the list, but I guess because it affects so few people, it can't be viewed as criteria?

Maybe drawing the symptom line isn't the issue. Maybe the issue is finding one  of various constellations of symptoms. 

OK, promise, shutting up about this now! [smile]

Thanks to all for the insightful responses!
DeBartolo

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 #11 

taffy — docs can tell the difference between lupus chilblains & the chilblains associated w/ Aicardi–Goutières syndrome, for example, by the different antibodies they find in the skin biopsies they inevitably take……so, the exclusion is not due to it affecting too few people, it’s because the biop used to dx lupus chilblains, serves to dx lupus as well, so there’s little point in including it in any criteria.

hope this helps.

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taffylinden

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 #12 
It does, thank you. I can see now that the difference between symptoms and diagnosis is an important one! Thank you. 
Bill H

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 #13 
Copied from http://m.rheumatology.oxfordjournals.org/

However, in a recent large study, 186 patients with RP, 65 with undifferentiated connective tissue disease (UCTD), 47 with systemic lupus erythematosus (SLE), 26 with dermato/polymyositis, 14 with rheumatoid arthritis, 7 with primary Sjogren's syndrome (SS) and 102 patients with SSc were investigated [22].
Of the 16 patients with diffuse cutaneous SSc and the 86 with limited cutaneous SSc, 14 (87.5%) and 53 (61.6%), respectively, showed the SSc capillary pattern.
Nine of the 65 (13.8%) cases with UCTD and 24 of the 186 (12.9%) cases with RP also exhibited the same pattern.
Four of the 47 (8.5%) patients with SLE and seven of the 26 (26.9%) with dermato/polymyositis, and no patients with rheumatoid arthritis or SS exhibited the SSc capillary pattern.
The conclusion is that the ‘SSc pattern’ is often present in SSc and dermato/polymyositis. Furthermore, patients with RP and UCTD may also exhibit this pattern occasionally (Fig. 2B). Therefore, capillaromicroscopy seems to be a useful tool for the early selection of those patients who are potential candidates for developing SSc spectrum disorders.
DeBartolo

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 #14 
nice find bill, but imho not substantial enough to warrent inclusion of nail patterns in the lupus dx criteria, if that was your point.
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upstater

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 #15 
This is interesting, because I have those proximal nail fold capillary issues. I wish they'd go away, as I am tired of looking at them. The area is also very puffy/inflamed and red....on all 10 fingers. And kind of even on my big toes.

My rheumatologist - who is a scleroderma expert - said she looks at these ALL the time. She said they can happen in any connective tissue disease. But she said in my case the pattern does not look like what she expects to see in scleroderma or DM (which usually have the same/similar pattern). There are different patterns out there....based on what the capillaries look like.

I am dx with Discoid Lupus from skin biopsy and UCTD.

Anyone else have these fun fingers?
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