PMRGCAuk

Latest EULAR guidelines on imaging for Large Vessel Vasculitis diagnosis

ard.bmj.com/content/early/2...

Found these interesting particularly because it talks about the distinction between cranial and mainly large vessel GCA. Also recommendation to ultrasound arteries in armpits ( sorry have brain fog and can't remember medical term! ) at the same time as doing a temporal artery ultrasound.

16 Replies
oldestnewest

Thanks for sharing!

1 like
Reply

Last year a rheumy did ultrasound to my armpits....had never seen it mentioned on here before, all was ok, except he couldn`t find my temporal arteries and even asked if I had been in an accident involving my head!!...to which I replied, are you having trouble finding a brain.....not a flicker from him....very dour faced....oh well...

1 like
Reply

I found this very interesting - thanks for sharing.

It shows that research into LVV - GCA etc is now becoming a priority and being looked into seriously.

As being one who has suffered sight loss through GCA (no warning symptoms other than a shadow in my vision) - diagnosed October 2017, even though had Polymialgia since 2012, the more that urgent treatment is administered to try to prevent sight loss without delaying due to no positive diagnosis, the better.

I would be interested to know how many people with my above symptom only (shadow in vison) with history of Polymialgia, where put on an immediate steroid I V drip rather than Prednisolone Tablets (60 mgs dose) to help prevent sight loss - I took the Prednisolone on the Friday night (6.45 pm) when the shadow was at the top left of my left eye vision, but by the time my sight was tested again the next morning, when I was asked to go back to the eye clinic, the shadow had moved and dropped down into my central vision and I could no longer read the eye test letter chart - my question is, if I had been put on the steroid I V drip on the Friday night, could this have been prevented - I would be interested to hear your opinions on this.

Reply

Hi,

That's a very interesting question. Certainly there seems to be a body of professional, expert opinion that feel IV methyl pred would have been the correct treatment but I am not sure there is any concrete evidence to support that.

Did you raise this with the Hospital? It seems to me that they should have taken on board what happened to you, investigated it and made recommendations to stop it happening to others.

One of the interesting things about the above document is how much of it is expert opinion as they don't have the research to back it up. I think it's great that they have included research questions for the future, whether they will ever be funded is another matter!

Reply

Have just checked the BSR guidelines from 2010, it recommends IV methylpred for any visual disturbance.

academic.oup.com/rheumatolo...

I would definitely raise it with the hospital and ask for an explanation as to why you weren't treated in line with the evidence based clinical guidelines.

Reply

The axillary arteries...

I think this paper and another by the same lead author:

The spectrum of giant cell arteritis and polymyalgia rheumatica: revisiting the concept of the disease

by Christian Dejaco Christina Duftner Frank Buttgereit Eric L. Matteson Bhaskar Dasgupta

academic.oup.com/rheumatolo...

need to be required reading for ALL doctors faced with query PMR/GCA patients.

If they knew what these two papers tell them, there would be a lot less poor diagnoses.

2 likes
Reply

Thank you both for your replies - just realised that I forgot to mention that they had already spotted inflammation in my optic nerves on that Friday afternoon as well, which seems to further enforce the fact that they should have put me on the I V Drip straight away.

At least 2 eye doctors, even though I think it was 3 altogether seemed to be discussing my case, then the main one said to me that they had decided against the I V drip, but with no explanation - I did not know enough about what was happening to me at the time to be able to ask for the reason.

More and more people are telling me that I should have been put on the drip as soon as possible when they already knew my vision was at risk with having the shadow in my vision. No-one so far as come up with an explanation as to why they did not do this.

I have a review with my Rheumatologist around mid-Feb, and am certainly going to bring this up - it bugs me that I may not have lost the central vision in my left eye if they had done, or at the least not lost as much site. It might have been so preventable.

Reply

I would print off the BSR guidelines and take them with you to the appt. If patients aren't treated in line he with guidelines then they deserve an explanation as to why not and an alternative evidence base given.

Personally I would want to know if they have a protocol to follow and whether they can assure you that is wouldn't happen to another patient.

Reply

As I have said before - it is what should have happened. Whether it would have stopped the visual loss is probably impossible to say - but there was a better chance than with oral pred.

Reply

Which is why I am wanting to know from them why they decided against it - do you know of any possible reason why they would have done? I have not seen anything anywhere to give me any down-side of the I V drip for speed of getting the steroids into the body as opposed to oral Pred.

Reply

Not ones I could write in public!

Reply

(Please see above reply from PMRpro).

Reply

Thanks, I will do that.

I saw 6 different eye doctors in the many appointments I had at the hospital (I had an arterial biopsy 5 days after my first appointment at the hospital as well, which seemed to confirm GCA, even without symptoms other than the shadow in my vision). Just one of them in my later appointments seemed surprised, when looking at my notes on the system, that I had not been put on a drip, and twice asked me to confirm that I had not been put on one - just shows that if she had been one of the eye doctors who had been on duty the first time I was at the hospital, I might have been put on the drip if had been her decision on that day!

Reply

Hi. Keyes. I have been having temple artery ultrasounds every 6 months as part of my rheumatology appointments and they always do axilliary arteries (armpits). Nuffield orthopaedic hospital, Oxford. 🤗 cc

1 like
Reply

Prof Luquami?

Reply

Yep that's the one. I also see Lorraine o'neale (consultant) who works with him. Am not very popular with either as I don't want to take mtx. Am down to 8mg and don't see the need to rock the boat by adding anything else. cc

Reply

You may also like...