Non-temporal GCA?

[winfong]

Just diagnosed with GCA, but have no issues with my temporal arteries (just all my large ones - aorta, thoracic, etc.). How common is that?

[SheffieldJane]

Not sure, but me too, ensure that you ask your doctor about your condition. I didn’t, I wasn’t sure about how far reaching Large Cell Vasculitis was.

[123-go]

I have inflammation in the aortic arteries and, like you, no cranial issues.

[Hidden]

How did they find this out and are you in the UK ?

[winfong in reply to Hidden]

I am in the US, though from the UK originally. Lots and lots of blood tests, symptomology, CT scan, echocardiogram, ultrasound ... Am arranging for a PET scan soon. Have bounced around from oncologist, to hematologist, to cardiologist, to gastroenterologist, to vascular surgeon, to - finally - rheumatologist.

[Hidden in reply to winfong]

Oh my, so someone should get it right.

[Hidden]

How did they find out winfong....what tests did they do ?

[Nightingales]

Hello, I wondered how it was diagnosed. I have recently had a bad flare, high blood markers and awful left sided rib pain. My gp says an X-ray won’t show anything but he had never heard of the thoracic blood vessels being inflamed.

[winfong in reply to Nightingales]

I've got it right here on my original CT scan. None of the specialists I've been seeing have contradicted it either.

Do you have GCA or just PMR (or both)? If I was still relying on my own GP, I'd probably be dead by now.

[Nightingales in reply to winfong]

I have PMR but have had several full flares with high CRP and ESR. My rheumatologist has never mentioned LVV. I have been on a roller coaster for five years and I am wondering about this. I have a telephone consult tomorrow and will ask about this and the possibility of us or scans. I have terrible left rib and chest inflammation . Thank you fir you reply.

[winfong in reply to Nightingales]

Certainly no expert, but it sounds like LVV and PMR are separate conditions that nonetheless often occur together. So, you can have 1) PMR, 2) LVV, and 3) both. I think it is more likely for someone with LVV to have PMR than for someone with PMR to have LVV, if that makes sense. ;^)

[PMRpro Ambassador in reply to winfong]

Since they are just different positions on a spectrum I don't think you can say that really can you? Inflammation of the arteries in the trunk can cause proximal limb symptoms - described as PMR.

See the link I quoted below.

[winfong in reply to PMRpro]

Sorry - just learning. Trying to come up with some way to understand it all, honestly. I'll try and tackle that article again, but wasn't sure I ran across something that really explained the difference between the two the first time round. Anything out there that might be more in layman's terms?

[PMRpro Ambassador in reply to winfong]

The difference is primarily which blood vessels are involved and where the symptoms are. Figure 1 shows that clearly and simply I think - cranial GCA can yield a biopsy result showing there are giant cells with several nuclei (that give the disorder its name) as well as the ultrasound confirmation although the same result CAN be found in other forms of arterial inflammation. You can see inflammation in the large arteries on a PET-CT but biopsies are only possible during major surgery - cutting out a chunk of blood vessel isn't often an option! In PMR the inflammation found on the scan is usually in soft tissue surrounding the joints. The relationship between PMR and LVV isn't certain except they can both cause the symptoms we call PMR.

There isn't much stuff that isn't highly technical I'm afraid but line by line reading might help. Is there anything here?

ard.bmj.com/content/77/5/636

or here

jrheum.org/content/46/12/1552

[PMRpro Ambassador]

It is generally called large vessel vasculitis (LVV) since they cannot say with certainty it is giant cell mediated - only a biopsy can say that, the ultrasound and PET-CT just show it is inflammation. It hasn't been commonly found in the past - it requires specific imaging which is rarely offered to the classical PMR patient. Temporal biopsy is likely to miss LVV if it hasn't spread to the carotid artery and further into the skull.

This

academic.oup.com/rheumatolo...

says that imaging studies show that up to 1 in 3 of patients with PMR have LVV inflammation at the outset of treatment.

Fig 1 shows which areas are affected in GCA, LVV and PMR when they are "pure" but in fact there is often overlap.

[winfong in reply to PMRpro]

Thanks. This is helpful. I've actually been referring to this on my own as LVV as the 2 diagnoses that fit - GCA and Takayasu's - were just too specific.

[PMRpro Ambassador in reply to winfong]

How old are you? I wonder why they chose to call it Takayasu's rather than LVV.

[winfong in reply to PMRpro]

I am 61. The diagnosis was GCA, not Takayasu's.

[Nightingales in reply to PMRpro]

Thank you fir a very informative article.