Research on GCA - is this how it happens? - PMRGCAuk

PMRGCAuk

20,342 members38,113 posts

Research on GCA - is this how it happens?

PMRpro profile image
PMRproAmbassador
17 Replies

I have just discovered this video, the next along from the one Idasmum posted earlier:

vimeo.com/257346811

Unfortunately the soundtrack is quite poor and you may need headphones and care to listen to it. It is a short talk given at the Road Show last year by someone from Newcastle doing research on GCA.

They are able to take a sample of the TAB and separate it into separate cells and then they are able to look at the various specific sorts of cells to be found around GCA lesions. They use half the sample for diagnosis and the other half for research. The giant cells in GCA have more than one nucleus - and we don't know why. It happens in some other conditions, sarcoidosis and tuberculosis are two. Is there are link between these diseases that causes the formation of the multi-nucleate cells? What makes it happen? Can we find a marker that shows it happening?

Might there be a common factor in treating them?

In the video they show how normal cells split into two, the cell body and the nucleus both split equally and turn into 2 cells. In another place on the image you can see a cell trying desperately to split into 2 cells. The nucleus spilts but the main body of the cells doesn't - and it all pops back together like a stretched piece of elastic. Which leaves a cell with two nuclei. The next time it happens there will be 4 nuclei - and so on. And so GCA develops.

GCA is a rare disease - so there are not many available samples to do research on, especially samples that haven't already been subject to pred because treatment is always started so quickly to reduce the risk of loss of sight. Sometimes researchers contact other hospitals to obtain samples to be able to get more data. But you do need to know that the sample is from a patient with GCA.

It could be a reason why you might be diagnosed with an ultrasound and still asked to have a biopsy. But they should tell you - so always ask.

Written by
PMRpro profile image
PMRpro
Ambassador
To view profiles and participate in discussions please or .
Read more about...
17 Replies

Thanks for posting the video, (I listened on my laptop fine, with sound turned up). Am I being simplistic in thinking that the increasing size of the giant cells, is what perhaps causes the headaches and eventually the sight loss.

Bridget

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to

Yes as they get larger they decrease the amount of blood that can flow through the vessels delivering blood to the various places it needs to be. So you get pain due to lack of blood, oxygen etc, and as it (GCA) gets into smaller and smaller blood vessels it eventually blocks the flow of blood altogether - that’s what happened to me - the ophthalmic artery narrowed so much that no blood could get through to my optic nerve and virtually killing it - hence loss of sight. Fortunately only in one eye in my case, but for many it’s both eyes affected.

That’s why we need a much better way of diagnosing before patients get to that stage.

in reply to DorsetLady

Thanks Dorset Lady. And can this increase of the giant cells be temporary? I suspect I had GCA in March 2017, sudden onset headache from hell, for 8 hours, vision blurring, temporal pains, and jaw pain. But this did decrease, although came back 2 days, and a few months later. I had stupidly self diagnosed with migraines, but I now think they never were.

What do you think about GCA being transient?

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to

Hi Bridget,

I don’t think GCA can be transient, I think once you have it you have it. But I would never say never having learnt what I have in the last 8 years.

From your description of your symptoms last March I would say it’s possibly either a TIA, or maybe a PMR flare. If I remember correctly I think PMRpro said she once had a similar experience, and it was decided it was a PMR symptom rather than GCA.

Unfortunately I think there is a lot more variables to both PMR and GCA than we know, some symptoms are consistent in patients, but some are very different.

PMRpro profile image
PMRproAmbassador in reply to DorsetLady

There is thought that GCA can start up - and abort. I had scalp pain and jaw pain which lasted about a month and disappeared. And I had typical signs of LVV. Always assumed as PMR until the flare 2 years ago when the local hobby GCA-guru agreed with me that is was borderline - but my new rheumy has other views

academic.oup.com/rheumatolo...

And I think this view is fantastic.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to PMRpro

Yes that does make sense, both illnesses are too closely interlinked. It’s not necessarily either/or but very often both.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to

Hi Bridget,

I don’t think GCA can be transient, I think once you have it you have it. But I would never say never having learnt what I have in the last 8 years.

From your description of your symptoms last March I would say it’s possibly either a TIA, or maybe a PMR flare. If I remember correctly I think PMRpro said she once had a similar experience, and it was decided it was a PMR symptom rather than GCA.

Unfortunately I think there is a lot more variables to both PMR and GCA than we know, some symptoms are consistent in patients, but some are very different.

PMRpro profile image
PMRproAmbassador in reply to

Indirectly - the lumen (the space in the middle) of the arteries is squashed and the blood flow reduced. The pain is due to ischaemia, lack of oxygen. And that is what does the damage, the optic nerve dies due to poor oxygen supply. Beyond a certain point it cannot recover (OH's field that) and the cells die, enough cells dying destroys the nerve irreparably.

Polywotsit profile image
PolywotsitPMRGCAuk team member in reply to

A video that we hope will go up in a week or so (we're waiting for the presenter to come back from holidays!) will say a bit more about this.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Hi PMRpro,

Very interesting. Fascinated by the “greediness” of a GCA cell, subsuming others around it like a marauding alien. Bit scary really. And definitely monster like 🐲

5lupins profile image
5lupins

Interesting, my sister has the rare neuro sarcoidosis and I have GCA .

HeronNS profile image
HeronNS

Interesting. I think the link between tuberculosis and sarcoidosis was one of the things my doctor mentioned when I was diagnosed with sarcoidosis decades ago, and I was one of those children with a positive patch test for TB for many years, after close exposure to people who had the disease. So maybe PMR, GCA's little sister, didn't arrive out of the blue....

PMRpro profile image
PMRproAmbassador in reply to HeronNS

OH has had TB it was established last year! My TB skin test is a doozy (so's his) but we had always put it down to being tested such a lot as it was used as a model for inflammation in research. I wonder...

Polywotsit profile image
PolywotsitPMRGCAuk team member

Well done for finding it! We recorded as many talks as we could during the roadshows, with the idea of producing transcripts and developing new videos from the powerpoint presentations. Eventually we may get new versions with voiceovers, so that the sound quality is better. So these videos that are going up on the channel at the moment are a way of making the material that we have already available to the PMR and GCA community. We realise that there may be some issues with sound, (and to be honest some presenters simply don't speak clearly enough) - and we are doing as much as we can to improve that before uploading the videos for viewing.

We have now posted up Gary Reynolds talk in two separate halves, because it appears that 5 minutes is about the optimal time for watching a video online!

vimeo.com/channels/1352513/...

PMRpro profile image
PMRproAmbassador in reply to Polywotsit

I just listened to a Radio 4 programme - and found it far better to read the transcript they kindly offer. I suppose... ?????????

Polywotsit profile image
PolywotsitPMRGCAuk team member in reply to PMRpro

££££........

NanJean profile image
NanJean

I haven't listened to the recording, but I find your explanation of what it contains being very important. I had an aunt who died of complications of prednisone (infection) while being treated for GCA. Now, I think the monitoring she got was awful. Her brother, my uncle, died at 40 from sarcoidosis. When my father was in his late 70's, they thought he had TB. A biopsy showed he had sarcoidosis. He was never treated except for needing a pacemaker for which it was assumed the sarcoidosis had affected his heart.

And I find it very interesting at how the cells appear to want to split in two. Which to me is a way cancer may get away from ones immune system. Not long after I began being treated for GCA & PMR a medium asked me at a reading, if it was cancer. He could tell it was in the blood and further that it had taken over my whole body.

You may also like...

Research into GCA and its effects on patients: The EULAR/ACR Response Criteria for GCA

Dasgupta to name just two) working on a project looking at patients’ experiences of GCA and which...

How autoimmune disorders happen

with PMR and GCA the damage being done is to blood vessels, we do not get damage to other organs...

Research into causes of GCA

interview and blood test, hopefully I and others can supply the researchers the data that will...

GCA Flare - how much to increase Prednisone?

this blog to do the slow reduction, splitting my 2.5mg tablets in half, so first step was going to...

PMR and GCA Research Hits the Road!

opportunity for patients and researchers to learn from each other! You can find more information...