(snip...) Draft criteria for large-vessel vasculitis support key role for imaging
CHICAGO — Advanced vascular imaging is expected to play an increasingly important role in the diagnosis and management of large-vessel vasculitis, according to a draft of the American College of Rheumatology/EULAR classification criteria for the condition.
(Since the past 30 years) "...several important changes have occurred including a wide adoption of the use of imaging for everything in medicine,”
Within the proposed draft criteria for giant cell arteritis, investigators recommended that:
* Patients are required to have a diagnosis of vasculitis and aged at least 40 years at diagnosis.
* Patients exhibit at least six points of inclusion criteria, including features such as jaw/tongue claudication, morning stiffness, persistent, severe head pain, rapid visual loss and tenderness of the scalp.
* Imaging criteria include aortic activity detected via fluorodeoxyglucose PET-CT scans, bilateral axillary involvement and ‘halo’ sign at temporal arteries.? (more...)
was brought out at the end of last year or earlier this year I think - the task force is full of recognised GCA experts and patients as well as all the other skills. I know several personally - and they do get feedback believe me. At least one follows the forums.
The info I posted is...and dd : Merkel PA. ACR/EULAR Classification Criteria for Large-Vessel Vasculitis. Presented at ACR/ARHP Annual Meeting, Oct. 20-24, 2018; Chicago.
None of these guidelines are followed as a 'general' rule here in France - when a vascular biopsy is take, it is less then 1 cm. As for vascular ultrasound of the head, no. Not yet done. Mebbe at a large centre, but my ophthalmologist says he does not know of, and I have not found.
As for a neuro-ophthalmologist, only one possibility, and that was in Lyon. None in Brittany. Zilch.
The UK is far more upto date in ophthalmology than is France.
I was glad to see EULAR piling in, they are hot on education, have some strong and focused members, but is still a struggle to get the whole shebang going - especially here in France, where they drag their heels and are loath to invest in the diagnostics.
Of course they aren't - these are NEW recommendations which were drawn up last year and the link I posted is to the paper with the reasoning behind the Recommendations based on sthe available study evidence.. Peter Merkel was presenting them at the Chicago meeting and what you posted was a press release type report. They probably need further ratification by EULAR/ARC members, in the same way the Guidelines for managing GCA are currently being ratified and should be issued/published next spring with a bit of luck.
You can't use new techniques without showing what they mean in the context of the illness. And that takes time, especially getting experts ll over the world to agree on the same things. It will come.
The study validating ultrasound versus TAB was completed a few years ago and it is available where there are doctors who were involved in the study or anyone they have trained. So it will be available in France in a centre that participated in the study - but to a great extent that is also the case in the UK and the USA. Training technologists is a time-consuming and expensive process and when you are short of staff anyway it isn't much of a priority. So in the UK it will get worse not better. Otherwise it also depends on whether there are enough patients to cover the costs of a new service. Even in the USA.
A lot of this research has happened in the last 10 years - and some is down to the work of the charities in pushing for it. It is a lot better than it was then, believe me.
Yes. And, I did start my post with 'Draft criteria'. As was reported at the end of the article :-
Drafts for classification for large vessel vasculitis were presented at the ACR and will be submitted to the ACR/EULAR committee. The need for the updates is critical, since the last classification criteria was published in 1990; since that time, available evaluation options have expanded. The criteria will also help differentiate giant cell arteritis vs. Takayasu arteritis vs. another form of vasculitis.
The drafts also recommend the use of advanced imaging, which will allow for early identification, as well as the ability to gather robust data to make clinical decisions. Updated guidelines are essential for meaningful research outcomes, which will impact the clinical care of our patients with large vessel vasculitis.
Eileen J. Lydon, MA, RN, ANP-BC
Board member, Rheumatology Nurses Society
Nurse practitioner
New York University Hospital for Joint Diseases
Will now go to the committee stage. Would think 2019 should see the draft set in solid guidelines. Excellent.
Thank you PMRpro both for your work and the work of the three small charities, whom in the last 10 years have worked hard to raise the profile and get more research, provided Patients Reps for those committees, attend hospitals to talk to students, provide patients for trials and have also, with very limited resources, managed to provide a tiny amount of money towards research.
Those charities started off with volunteers and only one in the last two years has a couple of part-time paid workers (who actually put more time in than they are paid for).
Helped to kick start research (remember 'Your Ears' which is on a thread on this forum ) and when the basic stuff done by volunteers proved the theory, Now the correct research within all the parameters surrounding any research is being undertaken by a cash strapped NHS Research department which has managed to find a part-time person (two days per week) for that to be undertaken by a Rheumatology Nurse, who works the rest of the week with patients.
I was one of those who took part in the Tabul study at my local hospital. However the cost of training one operative and the machine, means it is no longer available at present. I was also involved with the TCZ trial along with other volunteers.
Kate Gilbert then ran 'Roadshows' as the the Wellcome Trust were talked too, listened and then agreed to pay a set sum. They were all advertised on this website and people attended free of charge. All those Roadshows were run by volunteers and the medics came for zilch, happily cutting into there spare time to attend.
Without patient reps sitting on committees, the age range for PMR and GCA has come down from where it was late 60's onwards to 50 upwards. Those unpaid volunteers worked hard to prove that the age was too low. I watched as two ladies volunteers, both married and with families, both with PMR and GCA put their backs into that project.
The NHS: We in the UK are allowing it to be chronically underfunded and run into the ground. We all know that the NHS is starved and are losing staff right left and centre. So it is no wonder, to me, that some illnesses have to take higher priority.
I am glad that when I was 10 the NHS came into being, I am sad that 70 years later I am watching it slowly go back to where:
money counts, if you have it you can get the best of care, if you do not.............
Yes, it is a lot better than it was ten years ago - how do I know?
I know the original 25 and the one dedicated medic in the UK who all met on the 14th March 2008 and paid their own way to get to London and stay overnight. The medic who organised a room and paid out of his own pocket for morning coffee and a lunch.
Finally there are currently 812 recognised auto-immune illnesses and they are the most difficult to contend with.......... you can put 'Orphan Illnesses Organisations' in your search engine and read up.
Yes we will find cause and a cure and in the meantime better diagnostic procedures and more friendly medicine.
We will get there, it just takes time, and unfortunately, money.
I have not yet won either the National or European Lottery, that last lot of 76m euros would have come in handy.
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