Temporal artery biopsy

[Helliwelli12]

Biopsy did not show positive result but I am told to continue tapering the prednisolone. How common is this?

[DorsetLady PMRGCAuk volunteer]

Quite common - if the tiny sample taken doesn’t have any affected cells you will get a negative result - but that doesn’t mean you don’t have affected cells elsewhere in that artery any other artery. GCA cells aren’t necessarily spread evenly throughout blood vessels. ….

The only foolproof result is a positive result… which is why we always say the symptoms are the key…

.. what symptoms do you have, and what dose are you now on?

[Helliwelli12 in reply to DorsetLady]

I'm on 17.5 mg now. Still getting a few twinges occasionally but not feeling spaced out or dizzy anymore. I've just tested positive for covid again. Attempting a phased return to eork next week if we'll enough but part time only and working from home due to covid

[DorsetLady PMRGCAuk volunteer in reply to Helliwelli12]

Okay -hope all goes well at work..but make sure you take action if twinges remain.

[Helliwelli12 in reply to DorsetLady]

I hope work goes well too going to take it easy. If my twinges continue do you suggest upping the dose to 20 mg

[DorsetLady PMRGCAuk volunteer in reply to Helliwelli12]

That probably would be sensible…. Returning to work may be more difficult than you think ,, even though you are at home initially.

[Helliwelli12 in reply to DorsetLady]

Yes it may be difficult but I feel like I should at least give it a try and see how it goes.

[DorsetLady PMRGCAuk volunteer in reply to Helliwelli12]

Yes of course…. and hope it works out for you…

[SnazzyD]

A negative result does not mean there is no GCA. This is because giant cells are not uniformly distributed and not everywhere. If the little bit of artery they removed from you didn’t happen to have those cells or any Pred had already changed some, it’s a false negative. Mine was negative but I was still treated with the usual protocol on the strength of the symptom history and good response to 60mg Pred. A positive result confirms diagnosis but a negative doesn’t confirm it’s not.

[Helliwelli12 in reply to SnazzyD]

Yes I understand it doesn't always confirm a diagnosis. I am just going to continue my taper on the prednisolone and returning to work next week part time we will see how that goes.

[PMRpro Ambassador]

The biopsy often doesn't show the presence of giant cells, for various reasons, but that doesn't mean you haven't got GCA, it means they didn't see giant cells. If the symptoms suggest it could be GCA, then it is treated as GCA.

[SnazzyD]

If the taper, which has already been quite quick for GCA, continues at this speed and if you have GCA, the symptoms will return at some point. In a way it helps to know it really is there. When I started on Pred for GCA with normal bloods and negative GCA it turned my life upside down for apparently no good reason. About 3 weeks in my symptoms returned due to temporary poor absorption of Pred (another story) and back they came. I knew then that Pred was my friend and GCA was really there. Time will tell for you.

Bear in mind GCA is a serious systemic condition and you are on a powerful drug that can affect judgement and concentration to greater or lesser degree depending on the dose and the person. Be wary of trying to do ‘business as usual’. Good luck!

[Helliwelli12 in reply to SnazzyD]

Ok thanks for the advise but I really have to keep working if at all possible and this is my way of finding out if I can or not. I will be cautious and see what happens. Did you continue to work?

[SnazzyD in reply to Helliwelli12]

That’s all you can do is try.

No I had to give up at 54, but we’re all different and every situation is different.You have to plough your own furrow in the end, but stay open minded and honest with yourself.

[KASHMIRI1]

Good morning, I didnt get a biopsy for my GCA due to the covid situation in May 2020. I did have an arterial scan when I saw my rheumy for the second time. It showed I had GCA which was a relief as despite feeling so much better on the high dose pred I kept wondering if it was GCA despite my markers both being over a 100,.

[Helliwelli12 in reply to KASHMIRI1]

I had an arterial scan too which was non conclusive so was hoping the biopsy would show something. I will continue with the prednisolone and go for my follow-up with the rheumatologist and go from there.

[KASHMIRI1 in reply to Helliwelli12]

I hope it goes wellfor you.

[phebamom]

Did the biopsy show negative or was the report written up negative. My temporal artery biopsy was written up in what can only be termed "ambiguous" language. I was undertreated for 3 years. I am very fortunate I did not go blind. I switched my doctors to an entirely different city. The first thing my new rheumatologist did was to send me to Mayo clinic in Rochester. The head rheumatologist at Mayo said: "I do not want to see a biopsy report, I want to see the actual biopsy slides". That took two weeks, and another drive across two states to Mayo. When I saw him after he looked at the slides he said: You have undertreated Temporal Arteritis. What were they thinking. You have "marked histiocytes in your cell walls." To this day I do not know what "marked histiocytes" means. But I knew the doctor was upset. My new rheumatologist started me on treatment. That was 10 years ago. Now I am dealing with cancer destroying my kidneys. I should be starting chemo next week. It's always something. The biopsy is only as good as the person who views the slides and writes up the report. Get a second opinion, preferably a second set of eyes to view the biopsy slides.

[PMRpro Ambassador in reply to phebamom]

The term histiocyte is used to refer to giant cells - and by "marked histiocytes" he meant there were plenty visible in the cell walls. Exactly what they are meant be looking for in the biopsy to confirm GCA!

[phebamom in reply to PMRpro]

Thanks, I always wondered what that meant.