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!
My Renal consultant is always on the ball and up to date with all things important and has never mentioned a SLEDIA score ?
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.
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.
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.
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.
Mixed Cognitive tissue disorder 
I am in total shock!!! Did not know That lupis is genetic.
Update from appointment 
Rheumatologist update
Not Lupus but it is Sjorgrens Syndrome.
