Temporal biopsy

[Rosina1871]

I have to have a temporal biopsy in the next couple of weeks and feeling a little scared. Looking for reassurance xx

[Songbird69]

Hi Rosina, I had one done around August last year. I felt just like you do. But the anticipation was much worse than the actual procedure. I would say, I felt nothing - and it was preferable to a trip to the dentist! Try not to worry - all will be well. Good luck. 😊

[Rosina1871 in reply to Songbird69]

Thank you. That’s reassuring. It’s always the unknown that is scary x

[Songbird69 in reply to Rosina1871]

You are certainly right - the anticipation always tends to be worse than the actual procedure, and you will almost certainly wish you hadn’t worried so much! These surgeons routinely carry out many of these procedures - all in a days work for them!!

[Rosina1871 in reply to Songbird69]

Thank you

[PMRpro Ambassador]

"In the next couple of weeks" - are you already on pred?

[Rosina1871 in reply to PMRpro]

40mg for just over a week. 6mg before that with pmr. Saw rheumatologist yesterday. Thinks is GCA but some things inconsistent. Seeing eye soecialist at hospital tomorrow, ENT and a rheumatologist follow up telephone appointment Monday. Have to have a Covid test before they can do biopsy and was told the result could take three days. Diary full but would have liked it with more enjoyable things!

[PMRpro Ambassador in reply to Rosina1871]

By that stage it may be pointless - if you are on high dose pred it can hide any signs in a test that isn't by any means 100% anyway. If it is positive it means 100% certainty that it is GCA. If it is negative it only really means they didn't find what they were looking for and there is a range of reasons for that!

What does he think is inconsistent?

[Rosina1871 in reply to PMRpro]

Started off with what I thought was a left ear problem . Antibiotics didn’t do anything. Scalp became slightly tender and felt quite poorly. Doc upped my prednisolone immediately and referred me. Rheumatologist wanted me to see ENT first. They only found BPPV on left where I was having ear problems. Said I shouldn’t feel ill with that. Follow up with rheumatologist. No temple pain. Dull ache across forehead. I can chew but jaws ache slightly after eating but mainly on the left hand side. I had a thorough examination and he feels 99% certain it’s GCA but wants to follow all routes as I still don’t feel well now. I had Covid jab a week ago and he wondered if that was making me feel off colour and adding to the problem. He said it was a bit late for biopsy but wanted to do it anyway

[Agavegirl in reply to PMRpro]

I agree with PMRpro. I had all the classic GCA signs(headache, double vision) but my rheumy wanted a biopsy. It happened about 3 weeks after I had high dose pred and, unsurprisingly, the results were negative. The procedure was OK but no one wants an unnecessary procedure.

[Rosina1871 in reply to Agavegirl]

Thanks. I don’t have vision loss or double vision but aware my cataract is worsening and my eye sight generally not as good.

[Rosina1871 in reply to PMRpro]

Just to add, blood tests revealed very high crp and esr. Can’t remember the readinds

[PMRpro Ambassador in reply to Rosina1871]

Ears can be part of GCA too - a PMRGCA charity got that research going and confirmed it! However - it does sound as if he's hoping to have real confirmation for future reference if he says it 99% certain. But if it were me I'd be asking if a negative result would change what he is going to do. If it wouldn't - I'd be a bit reluctant to have my forehead cut about even a little bit. It really isn't bad at all mostly and I wouldn't hesitate if it could be done immediately - but after 2 or 3 weeks of pred ...

[Rosina1871 in reply to PMRpro]

Thanks. I should be speaking to him next Monday so will query his decision on the biopsy . He did say it was a little late but then I got the call from the hospital this morning saying they are going to arrange it

[Rosina1871 in reply to PMRpro]

Just spoken to rheumatologist. Lots of research gone on in Leeds regarding GCA and they have found it has been found in a biopsy up to four weeks following high steroid treatment . Probably going for it

[Telian]

It’s normal to feel scared. I felt no more than tugging while they did it. No pain whatsoever. You will get soreness afterwards but only to be expected.

Try to relax and put your faith in them. We had a great chat during the procedure and time passed quickly.

[Rosina1871 in reply to Telian]

Thanks so much. Feel a bit better now

[Telian in reply to Telian]

My TAB results were negative, I’d started Prednisolone 4 days previously - had a positive Ultra Sound on the day of diagnosis but I know they’re not widely available. A negative TAB doesn’t mean you haven’t got GCA - they sometimes can’t get enough of the ‘bad bit’.

[Rosina1871 in reply to Telian]

Thanks for your reply. Just contacted rheumatologist secretary to ask if it’s really necessary to have biopsy because of the delay. Will see what he says when he receives message

[Marijo1951]

I was first diagnosed on 31st July 2017 and my rheumy arranged for me to have the biopsy the following day at Edgware Hospital. At the time I was feeling overwhelmed and it all felt a bit rushed, and I wondered why she hadn't given me a bit more time. Fortunately my granddaughter, then aged 17, was on holiday from school and came with me so my daughter didn't have to take a day off work at the last minute. I found out later from reading this forum that the rheumy had done exactly the right thing. I'd only taken one dose of pred and the test was definitely positive. I don't want to criticise my rheumy but if she'd taken 30 seconds to explain the advantages of having the biopsy immediately, it would have been helpful.

To be honest the procedure wasn't much fun and I wouldn't have been happy to have it when the outcome was likely to be inconclusive and not very helpful. Roll on the days when every hospital can offer ultrasound as a much less invasive alternative.

[Rosina1871 in reply to Marijo1951]

Thanks. I think the delay is all because of Covid

[Marijo1951 in reply to Rosina1871]

That's the reason for so much at the moment! My mum told me that during the war if anybody complained even reasonably about a delay, people would say ''Don't you know there's a war on?'' It's a bit like that...

[jinasc]

Follow this link, read and perhaps print off and take a copy to your Rheumy, they may not have seen it yet.

Involvement of the 8th Cranial Nerve.

link.springer.com/epdf/10.1...

[Ceathrua498]

Hi RosinaI had a biopsy 5yrs ago now and I was like you a bit worried but all went well. Good luck

[Rosina1871 in reply to Ceathrua498]

Thank you