Diagnosing GCA

[Ligtocicar]

I read about people diagnosed with GCA without having a temporal biopsy done. What other methods can be used, to come up with a correct diagnosis?

Thanks,

Gil

[polkadotcom]

Mine was diagnosed on symptoms only as I never have raised inflammation markers. A biopsy is more likely to return a negative result if you are already on steroids.

[DorsetLady PMRGCAuk volunteer]

As polkadotcom says, mainly by symptoms and maybe raised markers.

Mine wasn't, despite having all the usual culprits - pains, stiffness upper arms, shoulders, neck, extreme fatigue leading over a period of months to classic head pains - tender scalp, jaw claudication, difficult in swallowing.

All symptoms attributed to other things - until sight loss occurred - then diagnosed with an hour! - by another doctor. Fortunately most people don't get to that stage.

[Ligtocicar in reply to DorsetLady]

Thank you

[PMRpro Ambassador]

GCA is diagnosed on the basis of the clinical symptoms - a TAB is only really confirmation as having a "negative" TAB doesn't mean it is not GCA but only that they didn't find the giant cells that give it the name. There are several reasons for that - they may be what are called skip lesions - not evenly spread through the tissue. If you are looking at one of those bits - not giant cells to be seen. It requires not only a skilled and experienced surgeon but also an experienced pathologist, and neither are guaranteed. If the patient is already on high dose pred, the cells may have disappeared already. Finding the cells is 100% confirmation.

There is also an ultrasound technique - but it is not widely available in the UK yet. A study has been done that shows it is equally as accurate.

[Doralouise77]

Mine was diagnosed by symptoms and as I'd had PMR for a year. I did recently though (9 months after diagnosis) have a 'special' MRI. I'm sorry I can't be more specific as I just kept being told the same thing. (But I am getting the report soon and hopefully can be more specific). I was told that the hospital that I went to was the only place in my province that did it, and my province of Ontario, Canada is quite large. So it is not a routine cranial MRI which I had had several of. It looked specifically at the temporal artery on the side I was having symptoms. It would of course be done normally at the time of diagnosis but for me it was to check that the GCA was under control, and it was. I'll be getting the report hopefully this week and should know more. You might ask if anything like this is available. I know there is ultrasound too but don't know anyone who has had it done. Best of luck.

Cheers

[Ligtocicar in reply to Doralouise77]

Nice to talk to somebody from home. I'm actually from Timmins. Which town do you live in and, which hospital did you get this done.

Thanks

Gil

[Doralouise77 in reply to Ligtocicar]

Hi Gil,

Nice to meet a fellow Canuck. I'm in Port Elgin on Lake Huron. I had the test done at St. Joseph's Hospital in Hamilton. Just so happens that my rheumatologist works out of there. For me it's only about a 3 hour drive which is great. I also have an aunt in Hamilton and she loves to have me overnight which I take advantage of for appointments there. Are you being investigated for GCA?

I'll try to have more information for you later.

Cheers

[Ligtocicar in reply to Doralouise77]

Having a bit of trouble figuring out how to send personal messages. Got your post and I can really see you've been having quite the battle. Thanks for all the info. about pet scan, and everything else. Really hope you start to feel better soon.

TTYL

Gil

[PMRpro Ambassador in reply to Ligtocicar]

To send a pm:

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[Ligtocicar in reply to PMRpro]

Thank you.

[christine2715]

I was diagnosed with a PET scan and I believe you can be diagnosed with a hand held temporal ultrasound