Please watch Video (Giant Cell and PMR and Tocili... - PMRGCAuk

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Please watch Video (Giant Cell and PMR and Tocilizumab)

lemarie1 profile image
7 Replies

Forgive me if this has already been discussed on here but this is a video put out about a month ago called "Giant Cell Arteritis: Breaking Down Barriers to Optimal Management".

In this webcast, Dr. John Stone discusses best practices for integrating the latest clinical evidence surrounding new and emerging targeted therapies into optimal strategies for the long-term management of giant cell arteritis (GCA).

Tocilizumab seems to be treatment for the best outcomes.

Click on the link below.

youtube.com/watch?v=t6ZlaJ3...

I have edited it to give the link Poopadoop put up

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lemarie1 profile image
lemarie1
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7 Replies

Hi lemarie, you link doesn't work...is it this one?

youtu.be/t6ZlaJ3qZlM

lemarie1 profile image
lemarie1 in reply to

Yes this is the one. Had you seen it?

in reply tolemarie1

No I can't remember seeing this one. I watched it for a few minutes so will finish it later. There are a couple of videos about PMR too. It better watching than reading most of the time. It's my bedtime now....I thought I had missed sleep and it was 2am but fortunately only just before midnight. It should prove a useful video for people wanting info about GCA. Case studies always relatable. 😆

lemarie1 profile image
lemarie1 in reply to

Thank you dear Poppa..........you get a good night's sleep. You are a gem.

Bird-67 profile image
Bird-67 in reply to

Very interesting thank you 😊

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Hi,

Thanks for this link, interesting but a bit like the curate’s egg, good in parts.

As a GCA patient (now in remission) and a long time user of Prednisolone (way above the recommended accumulated dose), I have a few comments about it. Others may or may not agree.

Pity the introductory picture shows an enlarged temporal artery - the typical “go to” image - as that is not always the case, nor is it the one that causes sight loss (the biggest fear most patients have) - it just happens to be the easiest one to perform a biopsy on.

It is good that Jaw Claudication is now recognised as a much more important symptom of GCA than previously (as stated by PMRpro in reply to a recent post).

Good point that too quick a taper results in flare(s) so patient ends up taking as much or more medication than if a slower taper followed. But I think as patients we all know that anyway.

Speaker comes across as anti steroids - ‘many patients see Pred as much as a curse than a blessing’ - not strictly true, particularly if you have GCA - and PMR in some cases. More likely the doctors have this viewpoint. For those patients who cannot tolerate TCZ or don’t have access to it (particularly in UK where it still has to be approved on an individual basis) - this does nothing for the patient’s belief in steroids.

‘Pred fails the patient’ - more likely the fast tapering plan set by the doctor fails the patient.

Why was the trial based on one year only? We all know that in many cases GCA lasts longer than that - sometimes a lot longer.

Quotes 60% of patients flared within that year when just on Pred, but even with TCZ added in the figure was still 12.5%.

Even those on TCZ only 33% achieved remission within a year.

Surely that proves it lasts longer than 1 year - but no-one seemed to question that. Or maybe they did, but not on clip.

Still not totally convinced about TCZ, but then maybe biased because it wasn’t available when I was diagnosed.

PMRpro profile image
PMRproAmbassador in reply toDorsetLady

Thank you for that excellent critique!

I'm not entirely convinced either - and far too many rheumies appear not to have read the clinical trial results! It is obvious from them that there are at least 3 different classes of patient: those for whom it works well and who get off pred, those for whom it works a bit and a few for whom it does nothing. There is no guarantee of getting off pred entirely and if all it does is reduce the pred dose a bit it is a VERY expensive steroid sparer which is associated with some fairly hefty potential adverse effects.

As for using it for PMR? For anyone who has managed to get to 10mg it would be totally OTT I think.

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