GCA

[1Healthnut]

Had Bilateral temporal biopsy 5 months ago and my temples are still sore...getting headaches as well. Results were negative

[Hidden]

Tell us a bit more and some enlightened pro/DL might be able to comment. These wise ladies are a bit quiet at the moment, might be due to computer problems ?

[DorsetLady PMRGCAuk volunteer]

Hi 1Healthnut,

Could do with a bit more info please. What other symptoms have you got? What other tests have been done? As you may know just because the biopsy was negative doesn't necessarily mean you don't have GCA. What diagnosis, if any, have you been given by doctors.

[1Healthnut in reply to DorsetLady]

I think I have PMR, BTB came back negative, but I did read a study that said 86% of the time results are false negative. I have sensitivity on both temples and headaches almost every day.Sure don't want to go back on prednisone, but don't like feeling this way.Has anyone heard of a negative but was positive?

[DorsetLady PMRGCAuk volunteer in reply to 1Healthnut]

See my reply to later post.

[PMRpro Ambassador in reply to 1Healthnut]

I think 86% being false negatives is a bit OTT - more like half.

It is perfectly possible your temple pain is related to the bilateral biopsies - nerves are damaged/cut during surgery and that can cause pain.

Do you have other symptoms? Since you are not on pred you could ask if a PET-CT could be considered. One lady had a negative biopsy and on that basis was told by a supposed top expert in GCA she didn't have GCA. She insisted there was something wrong and felt more investigations were appropriate and she was sent for a PET scan which showed she has large vessel vasculitis affecting her thoracic arteries (chest).

[PMRpro Ambassador]

A negative TAB does not always mean you don't have GCA - it just means they didn't find what they were looking for, the giant cells or other signs of inflammation. In contrast - a positive one is 100% certain.

But more info would be helpful.

[christine2715]

Had you taken pred before the biopsy as I understand that this can cause the result to be incorrect.

[1Healthnut in reply to christine2715]

Yes, was on 60 mg for 9 days before

[christine2715]

What were your blood tests for ESR and CRP