Temporal Artery Ultrasound

[Donna5658]

Just wondering if anyone has had any experience with temporal artery ultrasounds? I finally saw a rheumatologist after being treated for PMR for a year by my internist. It turns out the rheumatologist is a GCA specialist. Because I had had a few fleeting stabbing headache pain episodes in July (maybe 4 or 5 in a row, each lasting a second or so and with only one or two episodes a day) the rheumatologist thought maybe I should have a temporal artery ultrasound just to be on the safe side.

There is a GCA rapid response clinic at the University of Washington here in Seattle and they have gotten pretty good at doing this kind of ultrasound. Since I haven’t had any headache symptoms since the end of July, it seems like it might be premature to have one of these ultrasound procedures now.

Does anyone have any experience with or thoughts about these procedures in the absence of on-going symptoms? I am at 5mg and plan to go down by a half an mg per Dorset Lady’s 5 week tapering method.

Thanks!

[PMRpro Ambassador]

Only one way to find out but I doubt there will be a lot to see if there are no symptoms - not sure if there has been any study on the presence of the halo sign after longterm pred and with no symptoms. But it is worth trying I think. The advantage of the u/s is that the artery is preserved and be checked repeatedly - with the biopsy, when it is gone, it is gone!

OTOH, SheffieldJane had been on pred for a long time and her rheumy ordered an ultrasound including the brachial artery (in the armpit) and, I assume, the subclavian artery. They identified the halo sign indicating LVV (large vessel vasculitis).

[Donna5658 in reply to PMRpro]

Thanks for this. What is the halo sign?

[PMRpro Ambassador in reply to Donna5658]

sciencedirect.com/science/a...

Scroll down to find two images, one is the transverse section across an artery, the other longitudinal, showing the bright red/orange blood in the middle and what the surrounding artery wall looks like, forming a halo.

[DorsetLady PMRGCAuk volunteer]

As PMRpro says only way to find out is to have one, but with lack of symptoms and being so low on Pred is it really worth it?

Might be… or is Rheumy chasing the dollar, and will your insurance fund it as no symptoms?

[Donna5658 in reply to DorsetLady]

Thanks. My thoughts exactly. She couldn’t have been nicer, but one does wonder about perverse incentives when it is the specialty of the provider. I will have to check with my insurance as I want to be sure they will pay for another one should I develop persistent symptoms.

[Rugger]

I took part recently as a 'subject' on a training day for Rheumatologists and Sonographers to learn the skills involved in doing these ultrasound procedures.

I have been on pred for 7+ years for PMR and GCA-LVV and have no apparent symptoms at the moment. Even so, they saw the signs in my subclavian and axillary arteries when they scanned my armpit - they put it down to "chronic changes". They also scanned my temple, but as I didn't present with cranial GCA, I don't think they saw any changes, but just practised the technique.

If your rheumatologist is recommending the scan, you have nothing to lose, apart from money if there's a cost involved, as DL says!

[PMRpro Ambassador in reply to Rugger]

I wondered how all that was going - I was involved in the the patient literature development. Bit far to be a participant from here though!

[Donna5658 in reply to Rugger]

Thanks for the reply!

Is the treatment for LVV the same as for cranial GCA?

Were there any downsides to the ultrasound? The rheumatologist said there might be some minor pain as they apply pressure to the temporal arteries in order to visualize them. She has ordered a bilateral u/s for both temporal and axillary arteries.

Have you had more than one u/s?

[PMRpro Ambassador in reply to Donna5658]

Enough pred to manage the inflammation and symptoms - and depending on where you live, maybe Actemra/tocilizumab.

It will depends on the operator - it is totally non-invasive, like u/s in pregnancy, liver scans and whatever.

[Rugger in reply to Donna5658]

The session as a volunteer subject was about 2 hours in all! I was scanned by numerous delegates on the training course, so far more times than you or anyone would have to undergo as a bona fide patient! They do apply pressure to ensure there is contact between their hand-held scanning device and your skin, but I wouldn't call it "pain" - more slight discomfort, just because there's not a lot of flesh on our skulls! I also had my armpit and area by my collar bone scanned to look at the arteries supplying my arm and that was fine. I was in awe of the procedure, so found it interesting and not at all scary or worrying - after all, I had willingly volunteered to take part!

The treatment for LVV is the same as GCA, as it is just a version of GCA, but in large vessels, rather than the temporal artery etc. Pred......... (I'm now down to 2.5 / 2mg) I did have Tocilizumab, but this is rationed in the UK, so I've had my 'allowance'!

PMR: 2016

GCA-LVV: 2019 (but probably had it from the outset)

[Donna5658 in reply to Rugger]

Thanks for the comprehensive answer! Did they start you at 60 mg?

[Rugger in reply to Donna5658]

I didn't have 60mg, as my rheumatologist treated the episode in 2019 as a 'flare' of my existing condition and put me up from 4mg to 10mg, where I stayed for 4 months before starting to taper again when I started Actemra/Tocilizumab.

Best wishes to you.

[SheffieldJane]

PMRPro took the words out of my mouth. I was on 3.5 mgs of Pred I could see the light at the end of the tunnel , my diagnosis was PMR. I didn’t feel well though and I had, had odd headaches. There is was nestling in my armpit, non cranial GCA.

[Donna5658 in reply to SheffieldJane]

Thanks for your reply!

How did they treat your non-cranial GCA? With 60 mg prednisone?

What were your headaches like? Throbbing or sharp and stabbing. Were they located at the temple? Mine were kind of like an ice pick stabbing my temple and extremely brief. I also have ms and read that these kinds of headaches can occur with it. Did you have other specific symptoms besides just not feeling well?

What dose of prednisone are you on now.

And finally, were there any side-effects from the u/s itself? I like to be prepared

[SheffieldJane in reply to Donna5658]

I was immediately put on 40 mgs of Pred. My headaches were more like a cotton wool head with viral feelings. I do get occasional PMR type symptoms - neck shoulder and groin pain, mostly I feel generally unwell, especially when tired at the end of the day. My symptoms are quite vague, I find it harder to gauge my Pred dose than I did with PMR alone. I imagine that Cranial GCA symptoms are clearer with an unusual headache and jaw claudication when chewing and visual symptoms (any combination.)

[Donna5658 in reply to SheffieldJane]

Thanks! What dose are you on now?

[SheffieldJane in reply to Donna5658]

5 mgs.

[Donna5658]

Just a quick update. I decided to send a myChart message to my rheumatologist asking if, in the absence of symptoms, I could postpone the temporal artery ultrasound. Her response: Absolutely! So I will wait until I have any suspect symptoms. Hopefully I won’t, but at least I now have a mechanism in place for dealing with it should I develop GCA symptoms. Thanks to all who commented.