Temporal artery biopsy: Questions... I've just been... - PMRGCAuk

PMRGCAuk
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Temporal artery biopsy

pattypoo01
pattypoo01

Questions...

I've just been told by my rheumy that I will be scheduled for a temperal artery biopsy because I'm having gca symptoms. Starting 60mg daily now. I've been taking prednisone since last September for pmr. Started at 20 got down to 7 1/2 then things started going downhill several weeks ago. I keep reading that a biopsy isn't going to show anything if I've been on prednisone already for months. Is that true? Am I going to have this invasive procedure for nothing?

25 Replies
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Probably. You can refuse the procedure. What difference will it make because a very high percentage of biopsies are negative even when the patient hasn't been on pred for long or not at all. And they still need to be treated because of their symptoms.

I think there might be some point if you had been on pred for even a few weeks, but for over half a year????

Have a look at the "discussion" section near end of this:

ncbi.nlm.nih.gov/pmc/articl...

Thanks for your advice, Heron. I just received an automatic type email from a vascular surgeon informing me of an appt. tomorrow afternoon. I have no clue if that's just a preliminary appt or for the biopsy. I;m not sure if my rheumy had his staff make the appt with just an order for a biopsy or if the rheumy includes any of my history. Well, whatever he did, the discussion regarding the efficacy of the biopsy will happen tomorrow. I'm not crazy about doctors and always have doubts but always wind up letting myself be talked into things which I later regret. Since the doctor is a vascular guy, I'm hoping he'll know SOMETHING!

Yes that is true, if more than 4 or 5 days, it won't show anything, the high doses are given to reduce the inflammation extremely quickly - as if not reduced quickly, partial or total loss of sight.

I declined the offer of a biopsy after being on a high dose for 7 days, my GP said the treatment would be the same due to my symptoms. I’m sure PMRpro will be along with the definitive answer. Good luck today .

Amayeee
Amayeee in reply to Dovelady

I wish I had declined the biopsy. If reports are correct there is only 30% chance of an accurate diagnosis from the biopsy. A lot of unneeded stress and cost for such low accuracy.

DorsetLady
DorsetLadyPMRGCAuk volunteer

Little point as others have said.

I was scheduled for one, seems to be the procedure whatever (in UK anyway), only to be told by the consultant it was a waste of time - it was obvious I had GCA from symptoms.

I had a temporal biopsy the day after I was diagnosed and it was very uncomfortable. However I didn't regret having it since it was very definitely positive. I would certainly have been resentful if I'd been given this invasive and rather painful procedure after taking pred for more than a few days when it was almost certainly going to give a negative result.

I agree with others - having been on pred for so long it will almost certainly be negative.

Unnecessary I think for you and it is not the most pleasant procedure as you are awake and have to have injections to numb the area.

It will take time for you to cut down on the pred - it has to be

reduced very gradually as you will have been told. Sometimes rheumys want to

reduce your dose but you must rely on how you feel and you will know what suits you.

All the best.

I agree, it’s too late. I had been on high dose Pred for over two weeks and was reluctant but it was worth it in my case as the cells were found. The purpose is that it confirms the diagnosis and therefore justifies the high steroid load.

You might like to read this:

ncbi.nlm.nih.gov/pmc/articl...

Thanks for all your replies. It seems as if having this biopsy is a totally useless endeavor. I have an appt today....don't know if its to discuss it or to have the biopsy. I'm hoping I can get some sense from the vascular guy. Not feeling too confident at the moment.

I started on prednisolone for GCA December 5th 2014 and had a biopsy on December 16th 2014 and it was positive, hope this helps. I didn't find the procedure a problem.

Thanks for your reply Saunders. I just found out my appt today is for the consultation before the biopsy. I will go well armed with questions,

Unless......... the hospital is carrying out research into GCA, and would welcome specimens for research.

I think a maximum of 2 weeks high dose pred; months is not going to give the +ve they’re hoping to find. They will have to base treatment on clinical signs and symptoms. They must think you have GCA or they wouldn’t be ‘wasting’ money on the TAB.

Thanks Soraya. The rheumy just phoned me! He just went way up in my estimation. He wanted to know more re my symptoms. I asked about the common false negative results for these biopsies and he said because of his suspicion of me having Wegeners (GPA) he thought I should definitely have the biopsy. After talking to him and doing some reading, it looks like he may have a point. I will ask the doctor today at the consultation about the possibility of him looking for the wegeners as well. Apparently it can show in the smaller arteries. But then I know nothing and have to try to decipher the double medical speak I read or hear. I wish I could take you all to my consult today!!!

Hidden
HiddenAmbassador in reply to pattypoo01

The visual image made me laugh.😂😂😂 Glad you feel supported.

PMRpro
PMRproAmbassador

I think the fundamental question is "Will this make a difference as to how you treat me if it is negative?" Positive is a no-brainer - but a negative result doesn't mean it isn't GCA, it means they didn;t find what they were looking for and there are a load of potential reasons for that.

The evidence is that there is usually going to be some signs of the inflammation even if it is "cured" and even after up to a few weeks on high dose pred. And let's face it - if you have symptoms there must be inflammation present - inflammation that wasn't prevented by the PMR dose you were on. Some doctors think that being on pred means you won't develop GCA - only if the dose is high enough. If 7.5mg was enough to deal with GCA, that is what they would use.

And if GPA is a potential diagnosis - that's another matter altogether;

Soraya_PMR
Soraya_PMR in reply to PMRpro

I was mulling this ‘time on steroids prior to TAB’ as I was driving, and concluded that if GCA has ‘broken through’ a lowish dose of pred, then inflammation is likely to be present despite pred. However 60mg is likely to reduce the inflammation, so time on high dose would be relevant, but low dose possibly not.

How long have you been on 60mg Patty?

Do you have nasal/sinus/chest symptoms? Have you had a chest X-ray? Do you have a +ve ANCA? Not sure they’re going to pick up Wegeners in temporal artery.

I have started 20mg tablets of prednisone 3 times daily since yesterday afternoon. (total 60mg daily) The gca symptoms feel better already. My jaw is still weird but my head isn't hurting! Yay!

This morning I read something about a TAB picking up some GPA cells from smaller arteries. I didn't understand it but it went with what my rheumy said about having the biopsy because he "90% sure" I have gpa and it would help to diagnose the gpa. I've had some nodules in my lungs that have been watched but nothing big enough to do anything about. I'm having a another lung scan in June. I just recently had a sinus scan which came out clear. A blood test in Dec. showed C ANCA and then he followed that with a proteinase 3 blood test which came out positive hence is suspicision of GPA. But nothing he can biopsy for the GPA.....SO FRUSTRATING!! I will definitely be asking the vascular guy this afternoon if he thinks he can find the dreaded suspected gpa in a TAB. And now besides being worried about what in the world is going on with me...I'm now stressing over the side effects of such a high dose of prednisone. There are so many of you that seemed to have handled that so gracefully but it scares me.

PMRpro
PMRproAmbassador in reply to pattypoo01

60mg pred and its side effects is nothing compared to the risk of the ultimate side effect of GCA: going blind.

Hmm, yes, in those circumstances and only on high pred for a couple of days, I think I would go with the TAB. I’ll be interested to hear what the vascular bod says about possibility of finding Wegeners in TA.

You split your pred dose? From what I’ve read, most GCA-ers are advised to stick with one dose per day.

DON’T STRESS! It’s not good for you! I’ve only ever been as high as 20mg so can only imagine what 60 feels like. But create a thread with your worries and people will tell you how they coped.

Rheumy said 20 three times a day....who knows what his reasoning is. But I feel better so thats ok. I decided to not have the TAB. I remembered pmrpro's comment about the treatment being the same and mentioned it to the vascular guy this afternoon and he agreed with my doubts whether I should go ahead with it or not. He said I should speak to my rheumy tomorrow and express my concerns. He didn't sound like at this point anything would show up in the TAB so even though he tried being non committal I got the impression he didn't think it was necessary. He also doesn't think the Wegeners would show in a TAB. So tomorrow morning I have to tell my rheumy that I who knows nothing am not following his orders. I'm dreading the conversation because this rheumy is very difficult to talk to. I have an appt with another one but its not until July so until then I'm dealing with this one. I am grateful he is keeping me from going blind but I need someone that will discuss things a bit more than 5 minutes. I keep hoping this one will grow on me before July but I'm 73 years old and I shouldn't be worried and stressing about a difficult conversation with him.

PMRpro
PMRproAmbassador in reply to pattypoo01

All the guidelines say in GCA the pred should be administered as a single one daily but a study did establish it seemed to make little difference in managing the inflammation. I would be asking that question. I imagine that if there are no visual symptoms then it probably doesn't make a lot of difference.

pattypoo01
pattypoo01 in reply to PMRpro

Thanks pmrpro, it is very early here and I haven't told him yet I'm opting out of the TAB he's ordered. Questioning his dosage schedule is really going to make him blow his top! My head and my jaw don't hurt anymore so I think I'll just not wait to many hours between pills.

Spoke on phone with rheumy regarding opting out of the TAB. I'm glad thats over but I'm still confused and with a million questions. Somethings just don't make sense. He mentioned Actemra for GCA but can't take it for Wegeners but then he doesn't want me to repeat Wegeners blood testing. Since his Wegeners diagnosis was based on the blood tests done in Dec., you'd think he would check it again?? I have an office appt with him next Wednesday. I asked how long he wants me to be on 60mg ..will he do ESR or CRP again? Nope! Pred dosage will depend on my symptoms. I'm going to see my GP on Monday afternoon to tell her my tale of woe. I know lots of people have way worse problems but this just seems so hard and I'm very emotional. She's very level headed and will try to make some sense of it all. Thank you all for your comments and I hope everyone has a lovely weekend!! Sunny Florida is warming up in preparation for the boiling summer when we all melt!

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