GCA

[1Healthnut]

Has anyone ever had a negative biopsy for GCA and has it

[DorsetLady PMRGCAuk volunteer]

Hi,

I think you'll find lots of people do. As has been said many times - a positive biopsy proves you have GCA; a negative biopsy unfortunately doesn't prove you don't.

Just because the sample taken during the biopsy doesn't have enlarged cells it doesn't prove that the rest of your body doesn't (or even elsewhere in the temporal artery), or it may be that if you're already on Pred the cells have returned to their normal size, but you can still have the underlying GCA present.

It's not like lots of tests - YES or NO, it's YES or Maybe, not sure!

[Suzanne457 in reply to DorsetLady]

Hello DL....This post from me is off the subject being discussed at hand. BUT , I wanted to take this opportunity to express to you, Dorsetlady , PMRpro (also Eileen ) Polkadotmom, and ALL of the MANY wonderful, knowledgeable and devoted people who are so faithful to this amazing Forum who are giving their support , time and help to SO many of us . Your dedication will forever be appreciated ! Thank you ALL from the bottom of all of our PMR/GCA hearts ! ❤️ Suzanne

[Margaret1951 in reply to Suzanne457]

Hear hear I agree with you, I used to feel alone with my GCA and PMR !! Thought I was the only one in the world until I found this forum !! Thank you everyone for your support and continued support x

[Nap1]

Yes hundreds of us. It's 2years now for me.

[PMRpro Ambassador]

Depends how you look at I suppose. As DL says loads of people have a negative biopsy but continue to be treated as having GCA on the basis of symptoms and response to steroids. TAB is the only 100% assurance that what the patient has is GCA although there is also an ultrasound technique which has been shown to be at least as good as biopsy in diagnosing GCA but is not yet widely available. That will be used on all patients once it is available - it is non-invasive, risk-free and quick to access.

I do know a few people who had a negative TAB and were told "not GCA" but who pressed for further investigations. PET-CT showed large vessel vasculitis affecting the aorta in a couple. But PET-CT is a very expensive technique and rarely used outside cancer simply because there is limited availability in the UK at least.

[enan-illuc]

Hi 1Healthnut,

Yes I had a negative biopsy in August 2016 and was diagnosed as GCA/PMR by three Doctors. I had lost vision in my left eye (I got it back fast with 60mg of Pred.) and many of the other symptoms. The Doctors started the medication before the biopsy. I believe it saved my sight. I hope this helps.