GCA biopsy while on prednisone

[Renesch]

I started on 20gm prednisone a year ago. Now reduced to 6.5 but have developed sore scalp and temples. Doctor wants me to go back up to 8mg until I get a biopsy for gca. This is the last dose I felt OK on with these new symptoms. Does anyone know if this will give a definite diagnosis considering I'm already on steroids out will I still be left wondering and a little afraid. Many thanks in advance.

[PMRpro Ambassador]

No-one knows - it is said to be positive in only 40% or so of cases anyway! You would imagine that if GCA is active enough to cause symptoms, then y ou might also get a postiive biopsy but there are people on the forum who didn't get positive biopsies - all a negative biopsy means is that they didn't find any sign of the giant cells they are looking for in the bit of artery they looked at and there are several reasons for that. A positive biopsy is 100% certain, not so the negative result.

Does no-one have ultrasound available locally? SheffieldJane was diagnosed with large vessel vasculitis because they found signs of inflammation in the brachial artery - in the armpit.

[Renesch in reply to PMRpro]

Hi thanks for your reply. Doctor didn't mention an ultrasound, is that sometimes used to diagnose gca. Is it more accurate?

[PMRpro Ambassador in reply to Renesch]

It does now appear to be more reliable than a biopsy and will visualise inflammation causing structural changes in the artery wall:

ncbi.nlm.nih.gov/books/NBK4...

Unfortunately it isn't yet universally available - you need a trained operator whereas there will be a surgeon available everywhere, although that is part of the problem: you need a competent surgeon!

Thanks for the question - I haven't seen that article before and it looks pretty good and useful!

[RoadTrip in reply to PMRpro]

No mention is made of prior pred dose affecting results in ultrasound, as my hospital Rheumatologist did ultrasound after 6 days of 70 mg and was not expecting any good results as a consequence, with my results being inconclusive.

[PMRpro Ambassador in reply to RoadTrip]

I suspect it is more likely to show something than a TAB might - the thickening of the artery wall will remain for a while, it won't regress overnight. But it is the main reason for immediate emergency management - they wouldn't leave it a week for a query heart attack or stroke would they?

[RoadTrip in reply to PMRpro]

Agreed, at present treatment of the symptoms is urgent confirmation of diagnosis is not. 6 days at 70 mg was too long! Hence your immediate emergency management is needed.

[weatherman69 in reply to PMRpro]

thanks for saying that, over the past 4 years, over and over again, new docs asked if I had a biopsy, and when I say no, they say, then you may not have. Well I had a ultrasound, that showed inflammation in my right caroltid artery and more, and also I was having severe symptoms, temperature up to 102 and 103, unbearable headache, vision issues and lot more......so I had been prepped for biopsy, and the rheumy stopped them from taking me, and started IV steroids on me immediately, it was truly amazing how much relief, I got in 4 hours. He said that if you have all the symptoms and the ultrasound, and cat scans showed enough evidence to be call it GCA......and there was no 100 percent certainty that the biopsy would show the giant cells... I agree, alot of the docs are up to snuff on this at all.

[DorsetLady PMRGCAuk volunteer]

A biopsy is a bit hit and miss at the best of times, even without steroids…..GCA cells don’t develop in all blood vessels nor in a regular pattern…they grow in clusters and somewhat randomly.

My temporal arteries were never inflamed, enlarged nor painful - despite me definitely having GCA.

[Renesch in reply to DorsetLady]

Yes I remember reading something about your problem, in hindsight given your problems what advise can you offer me as to where I am now. I sure don't want to lose my sight but it all seems a bit hit and miss

[DorsetLady PMRGCAuk volunteer in reply to Renesch]

Well, in most peoples opinion, if GCA is suspected you need considerably more than 8mg.

Just to clarify, are you saying you had these symptoms at 8mg, or you were okay at 8mg and symptoms came on when lowering dose?

Usual recommendation for a flare, and maybe if you look on it as that (best case scenario) then you add 5mg to dose you last felt okay….so that would be at least 13mg. Maybe you should run that past doctor as a minimum dose whilst you wait for further tests…but personally I think I would be pushing for 15-20mg short term.

[Renesch in reply to DorsetLady]

Thanks. No idea how long it will take to get a biopsy. But if that is not going to be reliable anyway then how can I be sure I do or don't have it. I don't want to wait to lose my sight to prove it. Id love to be sure I don't. It's very confusing.

[DorsetLady PMRGCAuk volunteer in reply to Renesch]

Yes it is - and I feel for you.,,but you do need to discuss with Doctor.