Biopsy for GCA

[Wellagain]

Just had biopsy for GCA, was negative. Question, after anyone diagnosed as neg, but still had the symptoms. Was interested to hear.

[piglette]

Just because it came out negative does not mean it is not GCA. Have you been taking steroids? If so, it is virtually certain to be negative.

[Wellagain in reply to piglette]

Previously on 10mg of prednisone, when scheduled for biopsy, increased to 20mg. My SED RATE was 33, after diagnosis of neg, was told to remain on 20mg, have apt 9/13/16. I thought that was a long f/u, but I will see how things are going and if I need to be seen, I will call. I have a question about my eyes, how did your eyes feel during this process?

[DorsetLady PMRGCAuk volunteer]

Hi Wellagain,

As piglette says, please don't assume you haven't got GCA just because test is negative.

It's a bit misleading really, but unless the test is done virtually as soon as diagnosed, or at least within a few days it is likely it will come back negative as the steroids will have already started working on reducing the inflammation. Could also be that the tiny amount of artery taken was not affected anyway - as I understand it, the entire length of the blood vessel is not always affected, the cells can enlarge spasmodically along the vessel not nessecially along the whole length. Think that makes sense - hope so!

So really, it's your symptoms that are the key, and the reaction of them once you start taking the steroids. Plus of course your blood markers, unless you are one of the people that never have raised figures.

Life's never easy is it?

[Runrig01]

Yes I had a biopsy in Oct 2013, after being on steroids for 7 months for PMR. I continued to have classic symptoms. Eventually last year I seen 2 experts in PMR & GCA, who agreed that I had GCA for the previous 2 years. I am now thankfully managed by one of these Drs as my local Rheumy refuses to accept their findings. It was a relief to eventually have people agree, and try and improve things for you. As others will tell you because if skip lesions not all biopsies will be positive.

[bettyv910]

I had a negative biopsy after being on 60 mg. of prednisone for 14 days. My primary doctor and neurologist were not in agreement about the diagnosis and left the call to my rheumatologist who said GCA. That was November 2015. I had had total loss of vision in one eye for a few minutes, CRP 37.4, headache , aches in shoulders and neck and other non- specific things like night sweats. I also had a dramatic improvement on Prednisone. I am a 68 y/o female. So despite a normal ESR and TA biopsy, I do have GCA.

Over the past 8 months, my CRP has come down to 12.7, 7.5, then down to 3.7. My prednisone dose has tapered to 10 mg as of this week and a couple months back I had a brief flare-up. All in all, I have done quite well. I do still tire very easily and I think it has affected my hearing. I already wear hearing aids but I don't hear as well as I did. I connect it to GCA but haven't brought it up to any of the doctors.

So, in summary, Yes, I had a negative TA Biopsy and yes, I still have GCA. I hope this helps.

[Mischevious]

Hi Wellagain

Can I add my comments that are similar to the replies that have already been made. I had a biopsy, six days after starting on 60 mg of Prednisolone, that was negative. My diagnosis was then stated as "probable GCA, biopsy negative." I had other typical GCA symptoms, the arteries in my head were very prominent, I would have been a good candidate for a role as an alien in Dr Who. My CRP was over 300 (I do not remember the exact level)

CRP is now 3 and I am down to 1mg Prednisolone,. So yes, from my experience, GCA is a possibility but the plus side is that medication can deal with it and then life can be pretty much normal.

[PMRpro Ambassador]

Sorry it's late but here are a few facts and figures:

Having a negative biopsy does NOT mean the patient does not have GCA. All it means is that they did not find the giant cells that are the hallmark of the disease. They are not uniformly distributed through the arteries, not even in the temporal artery. It just so happens that the TA is the only artery that is easy to get at and which the patient does not really need so it is the one that is biopsied. So they take a small piece of artery and then make slides which they search for the giant cells. They may skip sections of the artery, the biopsy may have been done badly, the histopathologist may not have been experienced - all common reasons for not finding them. And, above all, the temporal artery may not be affected at all - in fact, having visual symptoms is LESS often associated with the TA being affected. It being inflamed is more likely to be associated with scalp symptoms. Chest and neck arteries may be affected - but not cranial arteries (in the head).

On the other hand, if the biopsy is positive it is 100% certain that the patient has GCA.

About 40% of patients with GCA symptoms have a positive biopsy - the rest are diagnosed as having GCA on the basis of clinical history - the signs and symptoms. Blood markers may not be raised either, as in PMR about 1 in 5 patients never have raised inflammatory markers.

For GCA outside the head, other imaging such as PET/CT or PET/MRI can be done but these are not options for cranial arteries - the brain uptake of the contrast substance is too high.

Unfortunately even doctors regarded as top experts in the field seem to either not know or to forget these facts.

[Wellagain]

Thank you for your very informative answer to my inquiry. I found the data very helpful.