arthritis-research.biomedce...
I came across this this morning while looking for something else - very up-to-date and from a very active and reliable group in the Netherlands. The same group is doing a study on leflunomide in PMR.
It looks hopeful for a better identification of patients presenting with PMR but actually with LVV and GCA - and given the large proportion of PMR patients they say have LVV/GCA it may well improve diagnosis of PMR too.
Very interesting. I wasn't diagnosed with GCA-LVV until 3 years after the PMR diagnosis, but looking back, we wonder if I had both at the outset. Anything which helps with early diagnosis must be good. Aren't 'research brains' wonderful?!
That's one word for them!!! Difficult to live with though 
Me too Rugger.
Hi Sue, did you present with different symptoms at the point of diagnosis of LVV/GCA or was it diagnosed by your Rheumatologist being more thorough?
I developed claudication in my legs and couldn't walk far without feeling my legs had 'run out of steam' - unlike the muscular aches and pains and 'heavy' legs of PMR. A PET-CT scan showed that my aorta and all its branches, including those that supply my legs, were inflamed. This was a new development, but I had a few unexplained symptoms when the PMR was diagnosed by my GP, that my Rheumatologist wonders could have been GCA-like. I didn't see her until a year after I had been diagnosed with PMR, so we couldn't turn the clock back and the PMR doses of pred had dealt with those symptoms anyway. It's all part of a spectrum, I suppose.
I hope you are keeping as well as possible.
Re the "spectrum"
academic.oup.com/rheumatolo...
Yes, that was the paper I was thinking of. The diagram makes it so easy to imagine / understand the links.
I am finding the article pretty heavy going, not having a science background. Does an altered diagnosis require a different approach and is the long term outcome much changed?
It is still steroids for management - but it is more taking account of the symptoms possibly indicating more than "just" PMR and more potential damage is possible. To a great extent it is the difference between diagnosing and managing PMR and diagnosing and managing GCA, In the longer, wider context - approval for use of biologics in LVV may be achieved even if they won't allow it for PMR
It is heavy going, as medical papers at that level are. 😟 The message to take away is that none of the patients had started steroids, which would have affected the blood results. So these proposals are for screening at diagnosis. The treatment should then follow 'local' guidelines for the condition(s) diagnosed and as PMRpro says, drugs such as Tocilizumab might then be available for patients with GCA/LVV, but might otherwise not be available for PMR, in some countries.
The long term goal for all of us is to be free of inflammation, whatever the cause. As we know from here, the length of time to achieve that varies enormously and the amount of steroids taken does too.
PMR: 2016
GCA-LVV: 2019
Thanks, PMRpro. Saved to read later.
Interesting. Thank you. x
Excellent research! I’ll be sharing this with my rheumy.
As someone with “just” PMR, it’s comforting to know that having a simple blood test can identify the development/presence of GCA/LVV, especially since it is an identified risk.
How interesting! The missing piece of the jigsaw perhaps? It makes me want my GCA/LVV diagnosis confirmed. Thanks for finding it. I wonder if Sarah Mackie is familiar with the study?
I imagine so - we have shared meetings with Elizabeth Brouwer, the last named author so the biggest name probably!
I thought it was SheffieldJane? Biopsy under your armpit?
No ouch! An ultrasound scan done by a specially trained technician. A fluke that she found the abnormal part of the artery really.
ha! But didn't that give you your diagnosis? Was it never confirmed?
The halo sign in the brachial artery (armpit) or subclavian (under the collar bone) are now accepted as confirmation. They are often affected and accessible - most arteries aren't, especially for a biopsy. PET-CT is also confirmatory
The patients in the study hadn't started steroid treatment, so I think it's too late for us! Unless I'm wrong, that's what "treatment naive" means! Once the inflammation had been brought under control by the steroids, I'm assumimg the blood results would change.
You've had the ultrasound, and maybe the PET-CT scan which the subjects had, so your diagnosis should be certain. We're in good hands!
I hope all's well in Australia.
Thanks Rugger. Unlike yours, my PET-CT scan didn’t show anything. Only the initial ultrasound scan showed abnormal cells. I was on 3 mgs of Pred. After that I was prescribed 40 mgs of Pred.
Many thanks for this PMRpro, very interesting, if technical, reading. I'll read it again later.
Very hopeful that this may identify folks who have this overlap of LV/GCA/ PMR. Thanks for posting.,
Thanks for this. And wouldn't it be wonderful if some biomarkers for PMR could be identified so that the disease could be picked up more quickly (by ill-informed docs...and also at very early onset)
As I said - I imagine it will show up a LOT of patients given the overlap they postulate already. The problem remains though in getting GPs to recognise when they need to use it.
Many thanks for posting the paper. Many of the words and their meaning are very difficult to understand - I began looking up as I was reading. It would be v-helpful if someone with biomedical training / knowledge could translate into a language we lay people could understand.
My take on it, there are markers that can help clinicians differentiate GCA from lookalikes (what are these lookalikes?). I was surprised however that infiltration of the immune system into the vascular system was implicated (I thought the immune proteins, if that’s the correct terminology, ‘swam’ around in our blood).
I remember a rheumatologist - when I was under their care before being discharged back to primary care - said ‘I read too much’. I was flabbergasted and thought (but didn’t dare utter), ‘well if you’re not going to tell me about the disease other than “take these tablets” I have no option but to do my own reading. It was about that time I came across PMRGCAuk.
Er - I could, but it takes ages and I do enough for no pay already
Lookalikes - anything that compromises the blood flow to the head and jaw could do the same. Ankylosing spondylitis, other things affecting the neck too.
This
healio.com/news/20200909/in...
discusses the problems in diagnosing PMR and GCA because the symptoms are very vague in the early stages - and headache is a fairly universal symptoms.
And no - the immune mediators can get into pretty much any cell and that is where they create their mayhem, attacking the cells.
Thank you very much, PMRpro.
very interesting and encouraging. I still spend a lot of time wondering if my symptoms are GCA. I wonder if anyone has had blood tests for certain markers other than the usual ESR, CRP, FBC. All my rheumatologist has done is ANA.
They should do the usual batch of rheumy things to rule out other causes of the symptoms which are almost as non-specific as the CRP and ESR! I did have IL-6 done I think but was never told the result.
When I was being diagnosed my internist did not do a platelet count as I look back over my test. I had lost 27 lbs in a month, the stiffness had begun in my hips and moved to my shoulders, I had some headaches. My doctor did not order any imaging test at the time. I wished he had. By the time I went to Mayo I had tapered from 80 mg to 10mg and back to 15mg in 13 months. The mri and other X-rays didn’t show any abnormalities in my heart or large vessels.
Can anyone tell me what your symptoms were when you developed GCA LLV after you were diagnosed with PMR that involved your heart only?
Thanks
I’d like to understand why those with GCA lose weight, any idea? It’s not common with PMR as far as I’m aware, ie not heard of it mentioned on this site.
As soon as I formally diagnosed with PMR and put on steroids, I gained weight initially, until I drastically reduced my intake of carbs…
It's been four years cleared of GCA (PMR, on and off - off now). Both in remission but must be vigilant. Excellent article and thanks for sharing.
Heat intolerance
Temporal Ultrasound May Be Useful in Giant Cell Arteritis Disease Monitoring (in patients paring corticosteroids with tocilizumab) 
Kate Gilbert’s book. Polymyalgia Rheumatica and Giant Cell Arteritis: a survival guide. 2nd edition. 
GIANT CELL TEMPORAL ARTERITIS AND THE LINK TO SEIZURES
A-Z of Life in Remission with Polymyalgia Rheumatica
