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Hallo Brenda and nice to meet you:p

The answer to your question is very complex - there are a lot of variables.

Some people who have a lupus diagnosis can be very certain indeed that it is correct. A positive skin biopsy, a positive kidney biopsy or a strong positive anti DNA antibody count are all pretty conclusive diagnostic pointers.

Other people will have been diagnosed using the ARC criteria. Strictly speaking these criiteria are not intended as a diagnostic tool, but as a selection tool for research definitions of SLE. Still if someone has more than 4 ARC criteria the statistical probability that they have lupus is very high indeed. Generally about 96% certainty.

See
http://www.aafp.org/afp/20031201/2179.pdf

Then the issue is - is it lupus or a different connective tissue disease? A rheumatologist may not be certain that it is lupus, but may be convinced that there is a connective tissue disease of some sort. These diseases are very close to each other. Especially in the beginning, it doesn't matter too much if the diagnosis is correct - is it UCTD, SLE or MCTD or sjogrens? Plaquenil is the first choice of treatment for all of these diagnosis, and with close monitoring by a good rheumatologist even if the disease course alters and a different diagnosis becomes more appropriate it doesn't mater because the initial treatment was the right one.

There is another group of people who have probably been misdiagnosed by inadequate medical assessment. Occasionally someone posts here saying their GP says they have lupus because their ANA was positive. Most people with a positive ANA don't have lupus, so if no further investigation was done, there is good reason to be highly suspicious of a diagnosis so carelesly handed out. Also, a rheumatologist should diagnose lupus ideally as they have the most experiance in this area. Still, most GP's don't prescribe treatmetent for lupus unless guided by a rheumatologist so usually the confusion gets sorted out in time.

Probably though, there are more people who do have lupus but no diagnosis or treatment than the other way around - ir no lupus but a diagnosis and inappropriate treatment. Typically we hear from people with CFS or fibromyalgia who were ignored for years before finally being diagnosed with lupus.

Does it matter?

Yes of course.

But in general the dubious diagnosis are for people who have very mild disease. They are more likely to be treated with NSAIDS and pain killers and maybe plaquenil, all of which are relatively safe medications.

I suspect that for those sick enough to need immunosupressants there is very little diagnostic doubt or room for error. Mostly people with severe SLE have signs and symptoms in abundance and it is quite clear that treatment is appropriate.

Does this help?

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