ard.bmj.com/content/early/2...
These validated criteria for GCA have been published. I'm not sure whether this is a good thing or not since an essential criterion is defined as "age over 50" to proceed to the rest of the classification. This will make life even harder for the small number of younger cases we know exist.
Unfortunately you can only read the Abstract - the complete article is behind a paywall.
You never stop working do you? All for our benefit. X
I confess - I was directed to it by the Vasculitis forum. Who wouldn't dream of sharing with us ...
You beat me to it…just reading it…and yes agree about the 50 years- And even for those over that threshold you need to reach 6 points to get diagnosis.
The final criteria items and weights were as follows:
positive temporal artery biopsy or temporal artery halo sign on ultrasound (+5);
erythrocyte sedimentation rate ≥50 mm/hour or C reactive protein ≥10 mg/L (+3);
sudden visual loss (+3);
morning stiffness in shoulders or neck, jaw or tongue claudication, new temporal headache, scalp tenderness, temporal artery abnormality on vascular examination, bilateral axillary involvement on imaging and fluorodeoxyglucose–positron emission tomography activity throughout the aorta (+2 each).
A patient could be classified as having GCA with a cumulative score of 6 points or over.
The age bit seems silly - since each of the last group of symptoms gets +2 and I got the 6 there!!! Was over 50 too.
Agree, but they do seem fixated on the 50 years - be interesting to see how it compares to their criteria for Takayasu’s arteritis - which is under 50!
ard.bmj.com/content/79/Supp...
Click on the red PDF bit to see the comparison of GCA and TA, haven't looked at it in detail yet - bedtime ...
What about occipital headache? I never had a temporal one.
Exactly…me too
I would be happy to pay the £35 for you to get it PMRpro. I wonder though if I would be allowed to just post you the file. No idea how these things work. Can send a cheque if u are in UK. Seems a shame that you with do much precious knowledge and one who uses it to such great advantage to us all, cannot at least have a chance yo read it.
That is very kind of you but I'm sure it'll appear somewhere I can read it - at the very least I can chat up my rheumy for a print off as I bet he has a subscription! All the useful stuff appears in the Abstract. I'll get Fran or Candy on to it.
Did they say anything about extra-cranial GCA?
See link included by Dad2Cue
Sorry. Thought it was behind a paywall for some reason
It doesn’t seem to encompass non temporal GCA. All I have is the halo sign in the armpit and the neck stiffness. The age thing is concerning too. Thanks for sharing.
It is very difficult to equate GCA and LVV - there is inflammation, but whether it is due to giant cells is a bit questionable without being able to biopsy it all.
I was reading the news article that DL had posted some time ago, before GCA was fast-tracked throughout the NHS. Boy! I wish I could do something about making that happen in the US. Maybe jinasc, you and DL can give me an outline on how to proceed. 💞💞
I wouldn't say it is fast-tracked throughout the NHS!! You know who to ask - not me.
Not exactly fast tracked - well not nationally....as PMRpro says... Good in theory..and certain areas...
Is it h**l. It was improving but ...............
BSR AWARD F OR OUTSTANDING BEST PRACTICE: March 2015-16
Preventing blindness by fast-tracking suspected Giant Cell Arteritis patients to immediate treatment
The fast track pathway (FTP) at the Southend University Hospital NHS Trust has significantly reduced the number of patients suffering sight-loss as an avoidable complication of giant cell arteritis (GCA). Furthermore, the service is cost-saving, results in an increased patient quality of life, and successful reduces the time to diagnosis in line with clinical established guidelines.
(Extract from BSR Handout No 7 issued by the BSR at the Symposium held in March at Southend).
At the symposium Professor Dasgupta, (founder member of PMRGCAuk and a Patron of PMR&GCA North East Support) who developed the fast-track pathway, said: "The pathway significantly reduces irreversible sight loss. This award means it's now going to have national backing from the BSR for them to take it forward with commissioning authorities so that this pathway is rolled out across the country and perhaps at some point across the globe to benefit all patients. It is one of the main culminations of all the hard work and research that we have done."
Education is key - 'Time is Sight'
At least it is in a few places...........
And Yorkshire EDs are rather better than average at identifying potnetial cases - even paramedics on the road are taught about it.
It is a simple fact that you can present with classic symptoms in the states and still be diagnosed with a sinus infection!! Like DL, it took over ten months and sight loss to get the proper treatment. The regular GPs, primary care here, need to be educated regarding GCA. I just checked the incidence rate here; Giant cell arteritis (GCA) is the most common vasculitis in adulthood with an annual incidence of 1/5,000-1/17,000 adults over 50 years old, copied and pasted from Orphanet.
Once again...50. They would be hard-pressed to get a proper dx unless they went to Mayo Clinic, Boston, Chicago, etc.
Beyond frustrating~~
it’s interesting that I scored 11 on this when I was diagnosed ( without the biopsy). Given this, I wonder why they proceeded with the biopsy?
Thanks for sharing it
I would have scored 11 as well without biopsy, but as mine included sight loss, that’s what clinched it, even though initially Ophthamologist registrar in A&E ordered one, once he’d discussed with consultant it was deemed unnecessary.
It is ridiculous that this criteria , not taking into account the possibility of someone having GCA before 50 is still being chosen in 2022.Not taking into consideration evidence in other areas and not just temporal GCA is equally creating the possibility of many patients falling through the gaps.
Part of the trouble is that the people creating these criteria work under the assumption that Specialists and Doctors will use their own judgement to work outside the guidelines when there is strong possibility of any condition from a patient's clinical symptoms and medical history.
I cannot remember who it was , and to do with which illness , as I just overhead the end of an interview with a female member of the BMJ recently whom specified that the paraphrased comment above was the case , and then genuinely looked surprised at the idea that that was not what was happening at clinical level. After her shock she pointed out that they would never expect clinicians to follow criteria blindly when a patient's presentation was evidence that tests were still required.
As long as the system makes this assumption about clinical practice on the frontline , rather than giving additional guidance for patients in special circumstances, or with unique preexisting medical profiles so many people are going to keep falling through the gaps.
Doctors and Consultants are either too scared because of budget considerations or losing professional face , and too busy, or disinterested, to learn about less common possibilities in the presentation of the conditions they treat to even consider examining a patient for a disease unless they fit the exact basic criteria of age , gender , ethnicity , size in the majority of cases . I've been put through medical hell for decades for various reasons because these presumptive guidelines get in the way of doctors just following the clinical symptoms they see in front of them.
I'm fuming! ....Again!!!!
I had a similar experience with Sarah Mackie a few months ago - we were talking about the problems patients experience in tapering when they are forced to reduce the dose too fast. Again and again ... She said that if the first taper fails it would be adjusted for a second attemt and was horrified when the patients present laughed and said "No it isn't, doctors repeat the same approach again and again." The expression on her face was priceless.
And the 2 year myth - "you've had this for 2 years: it must be gone or it isn't PMR". Ignoring the fact that PMR isn't the disease - it is the name given to a syndrome that can have various underlying causes.
I can't believe that they don't realise that 9 out of 10 Doctors and Consultants use this " Computer Says No" approach to clinical testing.It's encouraged by the powers that be to keep the costs down , they are reprimanded for doing checks outside criteria guidelines unless they can fully justify the reason for them , no matter how Senior they are in a Department.
And that is without considering the amount of them that have so much apathy about learning new things involved in disease treatment that they wouldn't even consider looking past the top five recommendations on the guideline list.
It has been my experience , that unless you are a well read , well trained patient , able to coax them to get the right job done , it is only a very few that either think beyond the criteria , or feel confident enough to dismiss them when they have a gut feeling about what they see at clinic.
It is, thank you….. I tried yesterday, but it wouldn’t let me get full article….
Thank you very much!
osmosis.org/answers/jaw-cla.... First time I’ve seen this definitive link between jaw claudication and GCA.
Really? ..it's been in most guidelines for diagnosis a long time....
I have but didn’t realise it was a red glad symptom. I started having difficulty opening my mouth to eat and have had pain in my jaw on chewing since Monday. Just hoping it isn’t gca flaring.
Think you need to get that checked, and the sooner the better...
thank you both. 👍
I’m surprised one doesn’t get points for having PMR given the association. I’m not sure I would have scored enough to get diagnosed. My symptoms were more constitutional. Fatigue, hoarseness, flu like fog, dry cough. It was really because I’d had PMR for 6 years that we were certain it was GCA. Luckily my markers were off the charts!
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