GCA Training in Scanning at Leeds

[PastelsinArt]

I took part in this training yesterday as a volunteer 'patient'. It was interesting seeing how different doctors managed, or had difficulty, practicing scanning on me. I was lucky that the tutor in my room was Prof Dasgupta. 3 trainees at a time and 3 groups over 1.5 hours, quite intensive. I picked up some interesting information from my prone position on how symptoms can be monitored and assessed, and Prof Dasgupta was happy to keep me informed of findings relating to my own GCA. He told me that he regularly scans his patients to check on the state of their GCA, not just for initial diagnosis. Also that temporal biopsies are becoming much less relied on.In spite of being liberally slathered with gel on temples, in hair, in armpits and side of neck, it was a positive experience.

I

[SheffieldJane]

How interesting, lucky you, I would have been fascinated.

[Rugger]

I was also a volunteer and found it very interesting. I was able to see my arteries pulsing away on the big screen! The delegates managed to identify the damage in my carotid artery! 😱

The tutor in my room was Dr Chetan Mukhtyar, who I observed to be a very good teacher. I told him I had had GCA-LVV for 8+ years.......

[DorsetLady PMRGCAuk volunteer in reply to Rugger]

Did he tell you it was too long? 😊

[Rugger in reply to DorsetLady]

No comment - from him..... or me! 😉 But I just wanted him to know. We weren't there as 'patients', but 'subjects', so I didn't expect any medical input. It seems that Pastelsin Art had a good interaction with the Prof!

[DorsetLady PMRGCAuk volunteer in reply to Rugger]

Fair do’s… 😊…

[PastelsinArt in reply to Rugger]

Apparently he had been talking earlier about people who get PMR then shortly after develop GCA and I'm a 'classic case' the syndrome has an acronym but I didn't catch it. He made no comment about the length of time (about 4.5 years). After the teaching sessions he offered to scan my shoulders for signs of PMR which I accepted. He announced that I have no active PMR. On reflection I think that means that the pred and Leflunomide are keeping a lid on it, not that I'm completely out of the woods. I've made notes to discuss when I next see Dr Mackie in a few months. She had been speaking at the event in the morning but I didn't see her.

[DorsetLady PMRGCAuk volunteer in reply to PastelsinArt]

Did it sound like GPSD aka GCA& PMR Spectrum Disease ? Was discussed at a seminar Prof Dasgupta hosted couple of months ago

pubmed.ncbi.nlm.nih.gov/373...

[PastelsinArt in reply to DorsetLady]

Yes, that's it!

[PMRpro Ambassador in reply to Rugger]

And what was his opinion?

[Rugger in reply to PMRpro]

See my reply to DL.

[PastelsinArt in reply to PMRpro]

See my reply to Rugger above

[123-go]

I attended several of Professor Dasgupta’s symposiums in my area before and since he retired from my NHS Trust. As you say, quite an experience and I was pleased that I didn’t have to travel home by bus with hair plastered to head and arms stiff from being in the same position for several hours.

The number of doctors being trained to use ultrasound equipment and to interpret images is a hopeful sign for more widespread, immediate diagnosis of GCA/ LVV around the UK. The equipment is very expensive and the training many months/several years.

[Raewynne]

That's interesting

[Temoral]

Does anyone know if you can request these 'monitoring' scans from our own rheumys?

[123-go in reply to Temoral]

Nothing to stop you asking but Rheumy would want to feel an ultrasound scan is justified. Something to discuss at next appointment.

[Temoral in reply to 123-go]

Thanks 123-go....I will put ot on my list for October appointment. 🤗

[Rugger in reply to Temoral]

I get the impression that most scanning in GCA is done for diagnostic, rather than monitoring reasons. I believe Prof Dagupta is now retired from the NHS and working privately, which is perhaps why he can scan his patients on a regular basis - as they are paying!

[Temoral in reply to Rugger]

Hmm...yes I see your point.

[PMRpro Ambassador in reply to Temoral]

The founder of the PMRGCANE charity who posted here as jinasc had a scan to see if there were any signs of GCA left before her rheumy told her she needn't worry about stopping pred. That was a while ago before it was available more widely. Depends if there is someone who can do it - it still isn't available everywhere, still building up the stocks of operators. Originally it was people who had been involved in the TABUL study who did it.

[Temoral in reply to PMRpro]

Thanks PMRpro...helpful information...as usual. 🤗

[kalgoorlie]

Rugger mentions that they were able to see damage in the carotid artery. I have GCA, on pred since February '24. Positive TAB. So does this mean that despite being on pred and potentially going into remission there is lasting damage to the arteries? Don't the 'giant cells' go away? Don't the arteries repair themselves?

[PastelsinArt in reply to kalgoorlie]

I don't have medical training but my understanding is that the damage done by GCA is permanent. This could be seen on my RTA but the left one looked clear to me. My axial artery showed 'moderate atherosclerosis ' in Prof Dasgupta's words. He said to keep bp and cholesterol under review. This is probably par for the course at 75, (my opinion) but point taken.

[PMRpro Ambassador in reply to PastelsinArt]

Atherosclerosis is nothing to do with GCA though. It will depend to some extent how long the inflammation has been under control and whether it has healed - new healthy cells replacing the granulated ones. This relatively new report on developments in the GCA world

ejinme.com/article/S0953-62...

suggests that once high dose steroids are started, the signs start to regress although they may persist for many months in some patients.

[Rugger in reply to kalgoorlie]

What I understand is that the inflammation (giant cells) causes damage to the wall of the artery which can be seen on the scan even though the inflammation isn't active any more. Think of when you cut yourself and even after it's healed, there may be a scar.

The damage that I spoke about showed as some white lines in the artery wall, which is what the sonographer is looking for when a patient is scanned.. The artery was still pulsing nicely, so I'm not losing any sleep over it and wouldn't want you to, either.

The human body is a wonderful thing and can withstand a lot of what happens to it. We are all proof of that! 😉 🌻

[DorsetLady PMRGCAuk volunteer in reply to kalgoorlie]

My understanding is that once the GCA has gone into remission and your body stops attacking itself, so the anti-inflammatory cytokines are working correctly and controlling the inflammatory ones then your blood vessel walls should return to normal.

Whether there is any residue evidence left behind like a scar after an operation or injury I don't know.

If that's wrong, then I am happy to be corrected.

my.clevelandclinic.org/heal...

[Temoral in reply to DorsetLady]

Thank you for that explanation DL 🤗