Hello all. I started Prednisone a week ago, for GCA confirmed by positive ultrasound.
I've been booked for a TAB on Friday by which time I'll be 9 days into treatment.
I've asked the consultant (via their secretary) if the procedure is still necessary and heard back that they'd still like to do it but I can opt out if I prefer.
I'd like to ask the forum if there is anything to be gained from going ahead and what's it like to go through. Does anyone have any thoughts please?
Thank you.
Ben
Ben, I didn’t have a TAB so can’t speak from personal experience but do know people who have had it done without any problems.
However, if GCA has already been confirmed via the results of a scan, I’m not aware of any benefits to be achieved by now doing a TAB. Perhaps someone will correct me if I’m wrong.
Thank you, Celtic.
I agree with Celtic you can’t make a positive any more positive!
The only thing I can suggest is that if the TAB was negative, it might reinforce the fact that there can be false negatives with TAB. Depends how altruistic you feel 
Personally I’d take the U/S result and cancel the TAB. Concentrate on getting yourself well. No need for unnecessary stress.
I like that answer!
Hi Ben,
Like Celtic I didn’t have one, but think I might have told you that already in a previous post.
Once you've been diagnosed, which you have, and have started treatment I don’t really see the need. As you are on Pred it may well come back as a negative result anyway, so why put yourself through an unnecessary procedure.
Have a look at this discussion a few days ago about same thing
healthunlocked.com/pmrgcauk...
I’m so grateful this place exists. Thank you DL.
The question that used to be recommended was: "Will a TAB change my treatment?" i.e. are you going to treat me as if I have GCA even if the TAB is negative?
I'm intrigued at the desire to do a TAB having already got a positive by u/s - the TABUL study showed they are equivalent. Unless the hospital has in in-house audit going on, checking the skills of their surgeons perhaps and as Snazzy says, reinforcing the fact TABs aren't the be-all and end-all.
That’s the clincher. Thank you.
However - maybe it shouldn't be the clincher. I have just discovered this video
Unfortunately the soundtrack is very poor and you need headphones and care to listen to it. It is a short talk given at the Road Show last year by someone from Newcastle doing research on GCA.
They are able to take a sample of the TAB and separate it into separate cells and then they are able to look at the specific sorts of cells to be found around GCA lesions. They use half the sample for diagnosis and the other half for research. The giant cells in GCA have more than one nucleus - and we don't know why. It happens in some other conditions, sarcoidosis and tuberculosis are two. Is there are link between these diseases that causes the formation of the multi-nucleate cells? What makes it happen? Can we find a marker that shows it happening?
In the video they show how normal cells split into two, the cell body and the nucleus both split equally and turn into 2 cells. In another place on the image you can see a cell trying desperately to split into 2 cells. The nucleus spilts but the main body of the cells doesn't - and it all pops back together like a stretched piece of elastic. Which leaves a cell with two nuclei. The next time it happens there will be 4 nuclei - and so on. And so GCA develops.
GCA is a rare disease - so there are not many available samples to do research on, especially samples that haven't already been subject to pred because treatment is always started so quickly to reduce the risk of loss of sight. Sometimes researchers contact other hospitals to obtain samples to be able to get more data. But you do need to know that the sample is from a patient with GCA.
I'm not saying it is the case - but you are at Bristol aren't you Brizzle? They have always had an active GCA research group. Maybe they are collaborating with Newcastle - I don't know. But anyway - it is a reason why they might want to do a TAB even though they already have an u/s positive and maybe they have another aspect they want to look at connecting u/s, TAB and GCA. But if so - they should tell you.
Thank you, PMPpro. Perhaps I'd have decided differently if they'd asked me to participate for research but I've cancelled now, without regret.
The specialist here in Brighton (RSCH), who does the TAB, would not do the procedure on me, as he said he thought the risks out-weighted the benefits... at least for me. And similar to what PMRpro said, he mentioned even if the results were negative, he'd still start me on steroids... as he and A&E doctor were both sure it was GCA.
Thank you Mamici
As your diagnosis is confirmed and the treatment will remain the same, I would want my doctors to explain the rationale for a biopsy. You worry that these procedures can be driven more by admin than medical necessity. eg it’s booked and all set so we’d better go ahead.
I wonder if the doctors will discover important additional information about your GCA? Or just confirm what they already know?
I had four doctors come up with my diagnoses of GCA then I was put on 80 mg of Prednisone which made me feel better immediately. After I was on Prednisone for a week they wanted to do a TAB but I said no. I didn’t feel that it would be accurate at that point and I felt like it was just something else they wanted to check off their list of things to do in their protocol.
Interesting. Thank you.
I had TAB done but no scan. I have been told I do not have GCA confirmed by MRI. Personally I would not have TAB - nine was done on 5/12/17 and area still quite uncomfortable so I would say no. You already have a diagnosis - jan
Good to know, Jan. I hope the discomfort lessens soon. I’m going to spare myself that.
My rheumy said he did not think it necessary as usually they do it within a time block, and confirmed that I have GCA I'm very pleased with that decision, my GP agreed and I was early on in this complaint so very like yourself. Hope this helps but I am glad I never had it done.good luck
Thank you jamie. It does help. 😊
I was told if u are on pred it would be no use having a tab as the pred mask the results
Thank you
If ultrasound has confirmed GCA I don't see the need for a TAB. I had my TAB the day after my GCA was confirmed and it was very unpleasant and uncomfortable, so I certainly wouldn't have one unnecessarily. The surgeon explained that they can anaethetise the surrounding area but not the artery itself, as it would collapse and make the procedure too difficult. Having said that, my TAB certainly confirmed that I had GCA. The report says 'The vessel is surrounded by chronic inflammation which includes lymphocytes, few plasma cells and focal multinucleate giant cells. There are focal giant cells within the muscle wall.' I think I would have been rather upset to go through it and then receive a negative report.
I had a TAB done for GCA a week after being started on 60mg of pred, which confirmed positive. The procedure was fine, healed pretty quickly, and I am pleased in retrospect I had it done, although I was dreading it, as there was then no question about what my illness was and all the subsequent treatment. Over the last 18 months I have had to see three different consultants because of side effects of steroids and it was definitely massively helpful that they knew that GCA was confirmed .
Thank you, Sho-Sho. Interesting to hear from someone who has had the procedure and especially that it wasn't that traumatic.
As it happens, I've cancelled mine.
With Emma going head to head with The Beast from the East, I don't think I'll be the only cancellation tomorrow.
I too had GCA confirmed in 2014 by ultra sound started on 50mg Prednisolone and TAB 4 days later which was negative. Whilst it's not that nice I wouldn't call it traumatic, I was able to drive home afterwards because they said I could!
All the best
Thank you Telian. How widely peoples' experiences differ! Good to hear yours.
They certainly do, whilst preparing me for the TAB, all gowned up and local anaesthetic administered they realised I hadn't been asked to sign the consent form - so propped me up to sign, they started to explain the pros and cons as they have to and I just stopped them and said, yes I know all that whatever goes wrong it's not your fault....I'm no fool but looking back I was quite naive really - my excuse was I was so unwell I couldn't defend myself, I was diagnosed with cancer not long afterwards.
You've taken control, I admire that.
My best wishes to you, Telian. Thank you for your reply
Hi Ben my ophthalmologist and rheumatologist both diagnosed GCA/pmr in 2016 and I was put on 60 mg pred daily which took away the pain and made me feel normal again. However the rheumatologist told me I "absolutely needed to have a temporal biopsy". I trusted him, silly me, and had the tab 10 days after starting pred. The procedure was done with local anaesthetic and was the worst experience of my life, very stressful and traumatic causing headaches and crawling sensations on right side of my head for months. Naturally the result was negative because of pred and I realised it was just a tick box exercise for rheumy. I felt very very angry. Luckily that doctor has retired so I don't have to see him again. Sorry for the long reply but really don't think you need to go through this after a positive ultrasound. I am now on 7mg after various ups and downs. Good luck in your journey and take it easy.
Thank you very much, Provence. I appreciate hearing your story. Procedure cancelled!
I had a TAB 4 weeks after being prescribed Prednisolone - what was the point??? The procedure wasn't traumatic at all but I just couldn't see the point of it. I suppose it's another box ticking exercise. Good luck on your journey and keep reading the GCA posts on this site. They are not only informative but very supportive.
Of course there is a reason..$$$$$$$$.....cancel would be my choice, the ultra sound already showed the "halo" they look for..
Sorry what is a TAB?
Temporal Artery Biopsy - the traditional way of confirming giant cell arteritis. They cut out a piece of the temporal artery and look for histological signs of inflammation and giant cells with several nuclei.
My apologies, I’ve been immersed in the terminology for all of a week now it’s become second nature. Temporal Arterial Biopsy.
Is it worth having a TAB almost 8 weeks after starting steroids?
Is there a test for Adrenal insufficiency?
It really is all in your point of view...
there is a way out of this painful, stiff PMR!
