The vascular surgeon said the biopsy for GCA was negative. I asked him if the biopsy result depends on where he took the biopsy. He said no and that it’s definitely not GCA. It’s up to the rheumatologists to get a diagnosis and I will be calling them tomorrow for an appointment even though they want me to wait until they call. The vascular surgeon doesn’t seem to have much faith in rheumatologists as he said they do lots of tests and just give you steroids. He mentioned there are new biological meds out there..
Has anyone heard of any biological meds? Can you have a negative GCA biopsy and still have GCA? I’m concerned about getting an accurate diagnosis and then getting the proper treatment for it.
Any of your thoughts/experiences are much appreciated.
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Moaningxcat
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The UK has gone to sleep now but I’ll start off by saying that you can have GCA and a negative biopsy. Mine was negative but I was still treated as GCA on the basis of symptoms and a rapid response to 60mg Prednisolone,. The false negatives are common enough for only a positive result to be certain and a negative result to be taken as possibly false. This is because the affected cells my not be in the 1cm piece of artery they removed. Look up skip lesions. Unfortunately there are many arterial branches that are inaccessible and the cells may be there instead. I don’t know where the doctor got their information from.
Steroids are currently the best treatment for GCA and are very good at what they do. This is because they counter various pathways of inflammation. The biological drugs fairly available in the US (unlike UK) cover just one type of inflammation mediator Interleukin-6. If your GCA is mainly caused by this then the biologics will be useful. If your GCA is driven by other sorts, you’ll need the Pred as well. Usually they are given together and some people find they can reduce the Pred much faster but some find they still need the Pred. Nothing cures GCA but you do need protection from the inflammation while the autoimmune activity persists in order to save your eyesight and protect you from stroke and aneurysms. The lack of treatment options is not the Rheumatologists’ fault.
Sorry this is a bit rushed, I’m off to sleep! 🙂. You’ll get better responses in our morning.
As SnazzyD has said you can get a false negative result yet still have GCA - studies do vary with numbers- this based on ACR finding and comes from an article in Medscape -
The gold standard for diagnosis of GCA is temporal artery biopsy documenting transmural inflammation, but a negative biopsy result does not rule out the disease, because there can be unaffected arterial segments and previous steroid treatment could influence the results. In fact, up to 40% of temporal artery biopsies have been reported as negative in patients who have clinical findings consistent with GCA.
This in fact a fairly recent Canadian study states following -
The positivity rate of temporal artery biopsy was 23.7%. Treatment of patients with negative temporal artery biopsy was associated with maintenance of corticosteroid treatment when the initial clinical suspicion of arteritis was high.
Another article from BMJ quotes up to 60%.
Plus the amount of time patient is on Pred and the length of the actually sample taken can affect the result.
Always disappointing , not to mention unprofessional, when one specialist makes derogatory comments about others…
Thank you for the information. I also read that a negative GCA biopsy doesn’t rule out GCA. The vascular surgeon was so adamant that I don’t have GCA though. He didn’t explain his certainty, however. I also read that if you don’t have GCA, the quick tapering of prednisone is successful, ie no pain due to inflammation under control. Is this true? I’m not sure if I should call the rheumatologists for an appointment now to start further testing or wait, like they are suggesting, to get to 30 mg of prednisone (starting May 11) and they should be calling me.
A negative biopsy doesn't mean it isn't GCA - it means they didn't find the cells they were looking for and there are several reasons for that. A positive is 100% certainty it IS GCA,
How ignorant of the surgeon. In fact, that vascular surgeon is very unprofessional and he should either get himself better informed or keep his opinion to himself. Steroids are the mainstay for GCA - they are guaranteed to achieve a rapid reduction in the inflammation and so the risk of loss of sight, The "lots of tests" are done in the hope of avoiding the use of steroids. In other rheumatological conditions they do use biologics but there are far fewer risks of loss of sight or life while waiting for them to start working. There is a biologic used in GCA but it also has adverse effects - like all drugs - and doesn't work instantly. Nor does it work for all causes of inflammation in GCA, just one because it is so specific. If you have inflammation due to the other (at least) two mechanisms, Actemra doesn't work for them and you need pred.
If the biopsy is negative, then the diagnosis is made on the basis of clinical evidence and balance of suspicion. Whatever some may suggest, a bit too much pred is preferable to the risks of GCA which include total and irreversible loss of vision or stroke and even death,
Thank you for responding. I appreciate the information regarding biologics. I am pretty ignorant of what’s out there, their effectiveness, and the side effects. I prefer prednisone to loss of vision, stroke, or death too!
My biopsy was negative, done after I'd been on 60mg of prednisolone for 10 days, following loss of sight in one eye and visit to eye hospital A&E. Vascular surgeon told me no GCA and come off steroids in quick reduction! Went to GP (originally I had gone to my optician who sent me to eye hospital), and GP agreed with vascular surgeon except slowed down the later steroid doses. Discovered the neurologist/rheumatologist appointment linked to eye hospital that had been arranged for me had also been cancelled. Not happy, neither was eye hospital when I went back to them. Told me to stay on prednisolone and get a local rheumatologist/neurologist appointment asap. I persisted with GP and local hospital and eventually got my appointment.
It’s so difficult to find your way to proper care, it seems. Many times, we need to advocate for ourselves, which isn’t easy. I’m glad you persisted and were able to get rheumatologist/neurologist appointment. I will be curious to know whether they diagnose you with GCA or something else. Thank you for responding to my post.
This was Autumn 2016, and yes, LVV form of GCA deduced rather than diagnosed by further tests. Eye hospital had already done an initial blood test showing high CRP and ESR, which, together with other symptoms eg ache between the shoulder blades, all responded well to the prednisolone. Had good care since then from rheumatologist plus an annual neurologist check. GP just does as told by rheumatologist for prescriptions.
I didn’t realise this. So much to learn about this illness. In my case I ticked most boxes of GCA symptoms which were relieved almost overnight on 60mg. As for me with fatigue and pred side effects - a different story. Just as I’m feeling semi positive about languishing on 3mg to get adrenals going, I’ve caught the cold my husband had a few days ago. Lots of liquids and rest today.
I take your point but in my case the artery in my right temple was swollen and they could see the giant cells. They also scanned my left temple and both armpits but didn't see anything untoward there. I guess it's possible that they could have missed something there but if so the pred should be dealing with it
No, just inflammation of some sort thickening the artery wall, The giant cells are what they look for in the histology of the biopsy - enlarged cells with more than one nucleus, They contribute to the thickening but need a microscope to be seen.
Just tested negative on one of the newer tests from the pharmacy so just a cold. Covid was my first thought as I feel grim after a bad night’s sleep with coughing and a blocked nose.
When I first diagnosed the Rheumy ordered a biopsy (came back positive) and also a CT Scan of my whole body 6 days after commencing Prednisone and it should inflammation throughout my body ( was interesting to see). Can you request a CT Scan?
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