[jen723]

Can anyone tell me about the St. Thomas "Alternitive Criteria"? Why is it not used more, here in America? I read that Dr. Hughes is a world renound "Lupoligist", why aren't others listening to him? I've never heard the word Lupoligist used here in America either. The Rheumy offices that i have been too are filled with old people with arthritis. It seems that no one knows enough Lupus, I just don't understand.

 

[sam101360]

Hi:

I think you may be able to get more information about a Rhumatologist that specializes in Lupus through the Lupus Foundation neaest you.

Mine is a Lupus specialist, although he treats many elderly with Arthritis, there are quite a few who come in the office that are not a Q-tip (my nickname for oldies).

Have you tried printing the alternate criteria and asking your Dr about Dr Hughes and these alternate criteria?

Sorry - Stephanie

 

[Clare.T]

Hello Jen

If you can find a rheumatologist who specialises in lupus it would be best. Many of them don't and don't have the necessary knowledge and clinical training. The ACR Criteria are recognised world wide as a description of lupus. They were not meant for diagnosis but for classification to arrive at an understanding of what could be called SLE and who to include in studies statistics and drug trials. They are a guide to diagnosis, of the sort of things to look out for but many cases are not typical.

The American College of Rheumatology (ACR) criteria .......... have provided the benchmark for clinico-pathological surveys worldwide and have (admittedly with some rust spots) stood the test of time.

They were always intended for classification, however, and not for diagnosis. Sadly, this worthy intent has not always been heeded and the ACR “classification” has all too often blurred into “diagnostic” criteria in papers, meetings, symposia and even case conferences. To use the classification for anything other than just that is wrong. It is restrictive. It narrows the scope for lateral thinking in clinical medicine – something which lupus, above all, allows us in abundance. Such constraints would not have allowed the birth of the antiphospholipid syndrome, for example.

Dr Hughes gave a talk commenting on the dangers of over reliance on the ACR Criteria list when diagnosing. He emphasised the importance of clinical experience. His list is not really an alternative criteria list to replace the ACR one, but additional signs to look out for which can help to diagnose in tricky cases that don't fit the ACR Criteria list.

I should think American rheumatologists are well aware of them.

Dr Hughes' approach is unusual in the UK too, by the extent he uses his clinical judgement. He has said that he can diagnose just by listening to what the patient has to tell him, with the lab tests confirming or showing what can't be known otherwise.
"Lupologist" isn't an official term for a lupus specialist and isn't in widespread use as far as I know. I don't know where it originated It emphasises the fact that lupus is a speciality within the speciality of rheumatology.

ETA Dr Daniel Wallace uses it in The Lupus Book - maybe he thought it up

All the best
Clare