Gca vs. vasculitis

[Nap1]

How are these diseases related except for the fact that they are both autoimmune diseases and does having pmr and Gca make one more susceptible to wg,etc. ?

[PMRpro]

Vasculitis is a general term meaning "inflamed blood vessels". GCA is Giant Cell Arteritis - due to inflamed arteries specifically, with the formation of giant cells in the inflamed regions which gave rise to the name. It is sometimes called Temporal Arteritis - inflammation of the temporal artery - but it isn't restricted just to the temporal artery, that was just the easiest artery to see being affected (it swelled up) and it is not an essential artery, you can take a piece out to have a look at and it won't really matter, the blood will find other ways round. GCA can affect any artery with an elastic layer to the structure of its wall.

So it is like dogs and spaniels - all spaniels are dogs, not all dogs are spaniels. GCA is a vasculitis, not all vasculitides are GCA. Or like viral infections, colds and flu: colds and flu are viral infections, there are other viral infections besides colds and flu. Because I have a cold it doesn't make me more likely to catch flu or herpes.

PMR is probably a vascilitis that affects the microcirculation - the tiniest blood vessels that supply blood and nutrients to the tissues. The blood supply is compromised because they are swollen - and that gives rise to the inability to exercise and recover as normal. Some research being done in Spain at present is looking at a possible mechanism for GCA - an involvement in some way of the tiny blood vessels supplying the walls of the arteries, including the temporal artery. That could be the link between PMR and GCA - because they are felt to be related in some way, about 1 in 6 of patients with a diagnosis of PMR go on to develop the symptoms of full-blown temporal arteritis. Some GCA patients may only ever have PMR-type symptoms - but modern imaging techniques now allow us to see that the involvement of the blood vessels is far more extensive than was thought previously.

Having GCA does often mean that you are more likely to develop various cardiovascular disorders later in life - but it doesn't mean you are more likely to develop wg or another vasculitis. It doesn't mean you WON'T develop it either - once you have one autoimmune disorder there is a higher chance you may develop another. On the other hand, you may develop all the signs of GCA or PMR and be told that is what it is - but later the diagnosis may be changed to something else. It isn't necessarily because they "morphed" into the other illness or because you had one you developed the other - they have a lot of commonalities and there is no 100% reliable diagnostic test. If they do a temporal artery biopsy and find giant cells then you 100% certainly have GCA - however, if they don't find giant cells in the bit of artery they look at it doesn't mean you haven't got it, doesn't even really mean it is less likely. It just means they didn't find the cells - and that happens in about half of patients.

[orsen-trapp in reply to PMRpro]

That's probably the clearest and best reply/explanation I've seen. 10/10!

[PMRpro in reply to orsen-trapp]

Thank you - you have to admit, I've had plenty of practise!

[RichardE Volunteer]

I believe that GCA is actually classified as a type of vasculitis, just like WG, etc.

I'm not aware that GCA makes you more susceptible to developing another type of vasculitis. But certainly PMR is closely associated with GCA. As I understand it if you have PMR then you should be closely monitored to see if it develops into full blown GCA.

There's a bit of information here on the VUK website about PMR and GCA that might be useful :

vasculitis.org.uk/about-vas...

[RichardE Volunteer in reply to RichardE]

Must have just crossed posts with PMRpro who knows much more about PMR and GCA than me and explains it much better

[PMRpro in reply to RichardE]

Happens to me all the time Richard - trouble is, I write a lot and it takes a long time ...

[Nap1 in reply to RichardE]

Thank you for all your valuable information. I had PMR three years. One yeary free of prednisone. Been diagnosed with GCA by symptoms only. Biopsy was negative. And ESR 85 . Also had elevated CRP. July 2015. Having a hard time getting down Without Relapses. Mayo clinic in August didn't have much to add. Presently doing 30/35 have developed herpes. Also developed pre-diabetes and strange like blood pressure. Right is always,30 points less then left ,Sounds like it could be heart related. Stress test and echo contradicting. GPsays he's not very concerned my heart not pumping up to par on one side. Will see cardiologist eventually. Big problem here is to find a rheumatologist who knows something about giant cell arteritis. When I told my rheumatologist about the herpes he wanted me to continue to reduce to 30 and he didn't even get on the phone. I am staying with 30/35 because this website has better information than any place else I can find and I have been following it since October 2015. I will take another blood test. My gut tells me it's going to be higher than the 19 it was last week. Prior it was 14 when I was straight 35. ESR just with the herpes might raise the number because of inflammation . Metscape has some interesting information relating to GCA and herps. Thank you for your information and your help and your devotion to this forum. Marilyn

[orsen-trapp in reply to Nap1]

If your bp differs a lot between arms it could be takayasus, another large vessel vasculitis. There's a good closed group on Facebook for takayasus arteritis which you might like to join. It's very international and I see from your post that you're not in UK. You'll probably bump into someone there who's seen by the same clinic as you!

[RichardE Volunteer in reply to orsen-trapp]

I was wondering about that too. GCA and Takayasu's are similar and I think some specialists even consider them to be different forms of the same disease.

It might be well worth asking your doctors if they have considered it and seeing if you can get referred to a large vessel vasculitis specialist who at least has some experience with Takayasu's.

[Nap1 in reply to orsen-trapp]

Thanks am checking it out.

[PMRpro in reply to Nap1]

Not only Takayasus - wildly different BPs in the arms is also a sign of subclavian steal syndrome and it is actually one of the things that should be in the exclusion diagnosis for GCA.

Look it up on Medscape if you are signed up:

emedicine.medscape.com/arti...

I think your GP needs poking a bit (I daren't write what I REALLY want to, they'd throw me off the forum!)

[RichardE Volunteer in reply to PMRpro]

Interesting, I'd not come across that one before. Need to read up.

But yes, gently nudging GPs with pointy sticks is the obvious hobby for the proactive, informed patient

[Suzym2u Moderator Vasculitis UK]

I was researching some information today for a lady diagnosed with GCA and I came across this programme by Dr Mark Porter, on Radio 4 , from 3 years ago talking about GCA. It is about 20 mins into the programme bbc.co.uk/programmes/b036v9hq

Not sure if it is helpful or not, but it just might be.

[Maxine-59 Administrator]

m.youtube.com/channel/UCJay...

There are some excellent short videos about Vasculitis including large vessel Vasculitis from the Kahn institute that really helped me make sense of GCA - there is also a link to the same through Vasculitis uk if the above doesn't work.

Mind you PMR pro has it nailed!

Best wishes

Maxine

[orsen-trapp]

It's a pity that very different conditions are lumped together as vasculitides just because they are characterised by inflamed blood vessels. Using the dog analogy above, it's like saying a great dane and a Yorkshire terrier are similar!

As my old and wise local consultant said, you get the disease name(s) because of the part(s) of you your immune system attacks.

I think the most useful research would involve finding a way to retrain immune systems because at the moment it seems the best they can do is control symptoms and inflammation for a while until one lot of drugs fail, then they try something else.

Sorting out the immune system would sort the vasculitides, ms, ibd, etc, etc. Wouldn't that be good!

[PMRpro in reply to orsen-trapp]

Wouldn't it just!

Yes, I object to them all being lumped in one place - and, for PMR/GCA at least, being left in the hands of rheumatologists. I know they claim to be vasculitis specialists too but many simply aren't interested. My theory is it's because they have to work a bit harder - RA is relatively straightforward until the patient develops rheumatoid vasculitis.

"As my old and wise local consultant said, you get the disease name(s) because of the part(s) of you your immune system attacks."

I've written something similar so many times on the forums - and the disease name was usually someone's claim to fame. At least now the imaging available makes it a bit clearer - but not enough is used in PMR and GCA. To still rely on the TAB is crazy - particularly since even one of the supposedly top GCA experts has been heard to say to a patient "TAB's negative so we don't have to worry about GCA". She still had quite severe symptoms on reducing pred so had the presence of mind to go back and demand they had a closer look. A PET/CT showed her thorax lit up like an xmas tree - said expert hadn't even got the guts/manners to tell her the result himself but sent a minion to tell her what to do. GCA doesn't just cause "temporal arteritis", something even the doctors get totally wrong, and the rest of it is ignored.

Long term it can result in quite severe cardiovascular disease - including aortic aneurysm. The guidelines say monitor with chest x-ray every 2 years - which will only show an advanced one. Echocardiograms and ultasound for abdomen are far more use. But in one book about living with PMR/GCA the author (a non-medical background patient) says the monitoring isn't done because knowing would just worry the patients when nothing can be done about it. Which is patent drivel - you start with stents these days! However - it appears many rheumatologists may still be living in the last millenium!

[RichardE Volunteer in reply to PMRpro]

I take both your points about lumping the diseases in one category. But in some ways that does work to our advantage.

On their own, some of the 20 odd vasculitides are very, very rare and would just not get noticed. As it is, we all know that there are huge challenges for rare autoimmune diseases like ours in getting specialist treatment, funding for research, access to new expensive drugs, etc. "Together we're stronger" is a bit of a cliche but I do think that having a single, louder voice means that we can all be seen and heard that little bit more both in the medical and wider communities.

[PMRpro in reply to RichardE]

Oh yes, couldn't agree more in that sense - but unfortunately lumping them all together when they have differing management means that GPs really do seem to struggle at the outset. They are after all the garden gate.

Then you get some very strange ideas on the part of some rheumatologists - when a patient has non-arthritic style symptoms they can be ignored and never passed on to the right place for diagnosis never mind management. They form the front door.

Even the people who went on to form the first UK PMRGCA groups approached what is now Vasculitis UK years ago and were told "not here, PMR isn't a vasculitis". It is now accepted as such of course, but at the time it was felt you couldn't separate PMR and GCA so the resources there are diluted when they needn't be. It's a history that probably can't be changed now but it would have been nice not to end up being a bit "separatist" as it is now.

[Nap1 in reply to RichardE]

I'm thinking perhaps in the uk you are stronger than the US. Or I just haven't found the right Doctor. I did find the right group of people. Thank you.

[Goldie2]

My daughter was diagnosed with takayasu about 3 years back. Again it's just a name the Dr has to use for insurance purposes. She has inflammation of aorta, giant cell and the small arteries. As per them all these Vasculitis have the same maintenance medicines. So name is a name.