LUPUS UK
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SLEDIA score?

Has anyone else had there disease activity rated by the above means? I'd never heard of it, although I like to think I am pretty much genned up on most thing lupus related.

At my recent nephrologists visit, he quickly calculated a value from my list of symptoms & gave me a score of 75. Looking at info on LFA website, 6-8 is a high score. So I think he got that wrong!

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My Renal consultant is always on the ball and up to date with all things important and has never mentioned a SLEDIA score ?

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Hi pattismith

I know from your past posts & comments that your renal guy is great. Now that Coppernob has pointed out the SLEDAI score is used in research it makes more sense, but I don't think it was appropriately or correctly used in my case.

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It's the Systemic Lupus Erythematosus Disease Activity Index (SLEDAI), one of two major scoring systems to evaluate the activity of lupus in clinical studie, so used mostly in research.

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Also: "Scores greater than 20 are rare. A SLEDAI of 6 or more has been shown to be consistent with active disease requiring therapy. A clinically meaningful difference has been reported to be an improvement of 6 points or worsening of 8 points." Trust your nephrologist is au fait with this index, cos he seems to have rated you very high. Hope all goes well.

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Thanks coppernob

It makes more sense now that you say it is used in research. This consultant was lovely, but I don't think he knew much about lupus from the things he was saying. I think he had a quick look on the internet before I got there, because he had the SLEDIA info on his screen. Trouble is he used my list of symptoms which I give to the rheumy & I score 1-10 on severity, so he just added the the numbers together to get my score. So not accurate & not very confidence boosting. I'm sure he knows his stuff when he comes to kidneys though.

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