Temporal artery biopsy

[Badpmr]

Bilateral temporal artery biopsy is scheduled to evaluate for GCA. Have any of you had this done and any tips or recommendations? Thanks.

[DorsetLady PMRGCAuk volunteer]

Not sure why bilateral biopsy being carried out, usually only one side is performed… plus as you have been on steroids for so long, not sure you are going to get anything conclusive.

Now you have posted there are related posts to view.

Although I had GCA a biopsy was not deemed necessary when I was finally diagnosed - it was obvious what it was.

[Badpmr in reply to DorsetLady]

Thank you. I have jaw claudication and headaches. I have been off steroids for 7 months. Bilateral is recommended for more tissue to analyze.

[DorsetLady PMRGCAuk volunteer in reply to Badpmr]

Jaw claudication and headaches should be enough to say GCA -and they really should be treating as such…when are biopsies scheduled ?

[SnazzyD]

What symptoms do you have for them to consider this?

I had one and it was negative, but they still treated me for GCA because of my symptom history and good response to 60mg Pred. I’d want to know how a negative result would affect their management. However, some doctors erroneously see a negative result the be all and end all of their diagnosis. This is because false negatives are common enough to make a positive result reliable but not a negative. The artery they access is not the only artery where giant cells can be present and these cells are usually not uniformly distributed which is why the sample can miss them. It is also down to the skill of the practitioner and it is recommended that a maxillofacial specialist does it. It is a very invasive procedure as it removes a sort of an artery branch and I be asking exactly why both sides need doing which isn’t usual.

What dose are you on now?

[Badpmr in reply to SnazzyD]

Thank you. I have jaw claudication and headaches. I have been off steroids for 7 months. Bilateral is recommended for more tissue to analyze.

[Dochaz]

I had both sides done a year ago to see if the inflammation of other arteries that showed up on my Petscan was present in my head also. Giant cells found on one side only. I hadn't started Pred yet. In and out of hospital within a few hours. Local anaesthetic. The injections weren't pleasant, but after that I felt nothing, though I could hear everything! No real pain in the aftermath, just minor discomfort at night when sleeping on my side. But I did sustain slight nerve damage on one side which left me numb to the touch from above my ear to the top of the temple. This has mostly faded, but not entirely. Doesn't affect daily life.

I was very relieved to finally know what was wrong with me as I had never heard of GCA before. It was also good to have a plan of action and to know that remission will come SOME day!

Good luck to you and "bon courage" 🍀

[Badpmr in reply to Dochaz]

Thank you and good luck to you!

[Nextoneplease]

Hi Badpmr 😊

I had an ultrasound scan of my temporal artery, also a similar scan under my arm. This is I think becoming more common in the UK and is much less invasive than a biopsy.

In any case the results were inconclusive. As Snazzy and DorsetLady have said, false negatives are common, especially after being on steroids for a longish time…..so like Snazzy I was treated for GCA on the basis of symptoms and of my response to, in my case, 40mg daily of prednisolone.

I wonder has something changed for you that has resulted in this biopsy being scheduled? All the best 😊

[Badpmr in reply to Nextoneplease]

New symptoms of jaw claudication and headaches. I've been off steroids for 7 months after being on them since 2016 for PMR. I still have a lot of muscle pain, but GCA can cause blindness so I need to know for sure. Thanks.

[Nextoneplease in reply to Badpmr]

Hi Badpmr

I certainly understand your need to be certain. However, as you say in another post, these biopsies are far from 100% accurate (in fact false negatives are common) so I hope you are or soon will be on a good dose of steroid if your symptoms ontinue to indicate GCA .

Yes, steroids have considerable downsides, but compared to possible vision loss? Well, I took the steroid option, despite the difficulties.

Good luck with it all 😊

[Badpmr in reply to Nextoneplease]

Thanks so much!

[Badpmr in reply to Nextoneplease]

Yes, new symptoms of jaw claudication, intermittent throat pain, and morning headaches. I am not currently on any steroids and tapered off 7 months ago. I think high dose steroids will mask almost any and all symptoms regardless of etiology.

[Janstr]

Get your hair cut/coloured or whatever you before the procedure. I wished I had as didn’t want a hair dresser anywhere near me for a while after it.

As far as I can tell the only reason for having the biopsy is to be absolutely sure you do have GCA. Given that the treatment is the same regardless of the outcome of the test, I question the need for this invasive test.

Moreover , my brother in law, recently had a ct scan of his head to try to identify the cause of his headaches. Amongst other things, he was told that the scan shows he doesn’t have GCA. ; this is a much more pleasant procedure

[Bluey-1 in reply to Janstr]

I had scans - much more pleasant procedure

[Badpmr in reply to Janstr]

Yes, I think biopsy is the gold standard and I know it isn't 100%, but I don't want to risk my vision. Plus, high dose steroids have significant risks too and I don't want to take them unless I really need them. Thank you.

[PMRpro Ambassador in reply to Badpmr]

Despite what many doctors think, gold standard doesn't mean it is infallible though - it is just that it is the best they have on offer! And the vascular ultrasound was validated as equally as good in a study.

[Badpmr in reply to PMRpro]

Yes, I agree and know there are false negatives with biopsies. Most biopsies are helpful mostly when they show disease and are “positive”. I would be interested in this ultrasound you referred to as actually, I am an MD (radiologist) in the USA and haven’t seen many studies on this. Thank you for your input.

[PMRpro Ambassador in reply to Badpmr]

pubmed.ncbi.nlm.nih.gov/279...

There must be other papers linked to the TABUL study but I'm a bit busy this weekend

[SnazzyD in reply to Badpmr]

With your symptoms, especially the claudication, to avoid risking your vision is to treat with steroids whether you are positive or not. I have read guidelines saying that Pred should not be delayed in order to get the biopsy result first because of the risk to sight. When I presented with those symptoms in A&E I was given 60mg of Pred within half an hour of arriving.

[Nextoneplease in reply to SnazzyD]

Agreed . I don’t understand, Badpmr, why you’re being left without steroids while you wait for the biopsies…..🤔

[Bluey-1 in reply to Nextoneplease]

I was treated with high dose steroids immediately prior to the vascular scan - thank goodness, certainly saved my sight.

[Nextoneplease in reply to Bluey-1]

So was I Bluey. Rheumy rang me at 7.30 at night and insisted I increase the dose immediately to 40mg (still not especially high), pending scan….

[Badpmr in reply to Nextoneplease]

Very low index of suspicion and low pretest probability. Thank you for your reply!

[DorsetLady PMRGCAuk volunteer in reply to Badpmr]

High doses of steroids may have risks -but not having them when waiting to be diagnosed can -and does -have higher risks -sight loss!

If proved unnecessary, steroids can be tapered and/or stopped -irretrievable sight loss cannot..

Take it from one who knows.

[JanetRosslyn]

One tip I received before mine.... Don't put your glasses back on too soon, wait until the spray on wound covering has dried properly otherwise your glasses will be glued to your face. 🤓

[Sophiestree in reply to JanetRosslyn]

😂 great tip

[Makmar]

My rheumatologist wanted bilateral temporal biopsies but the vascular surgeon said wasn't a good idea and so only did the right side, which was the one that hurt. His thought was if symptoms reoccurred the left side could be checked if initial biopsy was negative, which mine was.

[Missus835]

Yes. Had one done Feb. 1/23. It was a simple procedure and the surgeon froze the area in and around the artery. I did have anxiety about it, but surgeon and nurses were great and kept me relaxed. I was able to talk throughout and of course babbled.

I have been on steroids since Jan. 2022 and so GCA was ruled out, as no sign that artery had healed or was weakened. They only take a 3 cm. piece. After this I was referred to ophtamology clinic to check eyes. They also said no sign of GCA. After starting my taper from 60 mg. Pred to 35 at this point, I'm having some head pains again. Best of luck to you with your biopsy.

[Badpmr in reply to Missus835]

Thank you. Surgery has never bothered me. So they still put you on high dose steroids despite the negative biopsy? Best of luck and I hope you are feeling better very soon.

[Missus835 in reply to Badpmr]

I was put on 60 mg. during trip to ER due to head and jaw pain. Also to protect my eyesight. This was Jan. 21, 2023. After finally seeing Rheumatologist Feb. 8, she has me now tapering. Some head pain has returned. Maybe too quick a taper from 40 to 35 mg.

[Hisue]

Has ultrasound of the temporal arteries been offered?