Just saw this come across my Facebook news feed from AARDA and thought I would share. :)
http://www.nih.gov/news/health/apr2012/nidcr-11.htm (http://www.nih.gov/news/health/apr2012/nidcr-11.htm)
I actually saw my rheumatologist today, and having read this article on another site yesterday, I told him, "Hey, great news! I don't have Sjogren's!" After looking very confused for a second, I told him I didn't meet the new ACR criteria so I'm off the hook ;D (I only have positive blood work - and would probably pass the eye test thing, and would never agree to a lip biopsy). So he told me, nope, not off the hook... rheumatologists still make the diagnosis and this classification criteria is really geared more toward patients who would qualify for research studies.
Dang it. So close to getting undiagnosed ;)
Howdy Miss Suzy, thank you for the link. It was an interesting read. In my opinion though, I think all it is doing is adding to the confusion.
Many people with Sjogren's would not pass the set criteria. I also agree with mshistory (lip biopsy no way).
Seeker
What I see on the road ahead is even more Sjs sufferers being denied treatment. Statistics for our disease will be skewed and eventually it could be downgraded to rare disease status. I don't think it's a rare disease. Let's hope the European rheumys don't accept it. Sigh. :-\
Hi Suzy, thanks for the info. I found another link about it here:
http://www.medpagetoday.com/Rheumatology/GeneralRheumatology/32166
It talks about how it is more for research and trials, like mshistory mentioned.
I thought this part was interesting:
QuotePrevious diagnostic and classification criteria -- there have been 11 sets of criteria since 1965 -- have emphasized subjective symptoms, such as dry eyes and mouth along with more objective tests, and were primarily used as epidemiologic tools because few systemic therapies were available.
I guess we shall see what comes down the pipe . . .
Nice try mshistory! I was going to try the same thing...probably would have made the rheumy laugh (he's a no nonsense kind of doc). ;) :D
Thanks for the article and helping us keep updated Suzy! :)
Patze
very interesting read!!!! ha ha ha, Mshistory!!!!!! I would be undiagnosed with this too....I just have the positive bloodwork!!!!!-hootyhu