I was diagnosed with GCA in late May. I had never heard of this before and was dependent on advice from my rheumatologist and the booklet produced by the Arthritis Research. My rheum said I should have a temporal biopsy but COVID meant he had to arrange for this to be done at a private hospital. It happened four weeks after my first steroid infusion. It was a very invasive procedure. The results were negative because I had already had high dose steroids for four weeks. He had warned this might be the case. I took the actual biopsy in my stride but since then wonder if the procedure did me some harm. I continue to have sensitivity and discomfort in my temple and head on my left side and can’t tell if it is the GCA or the biopsy. Do others have experience of this to share? I understand some hospitals can do temporal ultra scans but mine doesn’t have the facility yet.
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Agavegirl
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Hi and welcome - so sorry you have had a bad experience. On top of Covid-restrictions it must have been horrible.
They won't be able to do ultrasound now the artery has been removed for the biopsy and to be honest I would be upset that the TAB was done at all after so long on pred. It will have cut and damaged nerves in the area, like any surgical scar, and that is where your pain is coming from.
DorsetLady and Snazzy will be along later - they both have had GCA so will be able to help more than me.
Had biopsy on Friday p.m. PMPro has identified more knowledgeable people than I. I have had ultrasound and the results were inconclusive, primarily as an earlier intervention would have been preferred and 1 week of high dose steroids will have masked the presentation. No criticism of the NHS, the potential loss of sight was the overarching influence determining who saw me first and COVID made the facilitation of care more complex.
Too early to reflect on post op pain in the longer term, but apart from the obvious discomfort should I touch the area. Pain free.
I had one done and, like you, it was negative but they still treated me as positive because of my history and great response to 60mg Pred. My wound was on the tender side for months and it took more than a year to feel fully comfortable. At one stage the pain was getting worse and worse and my husband found an ingrown hair had gone into the wound and was causing inflammation. When I was a nurse, the one thing that drove me up the wall was the tendency of surgeons to play down how long wounds actually take to heal. If things are a go home afterwards minor op’ (and this is what it is) it is assumed that it is like a minor scratch and should be ok in a week. The dawn of kicking people out of hospital when they used to stay for a week, brought in the assumption that somehow the body heals faster too.
Anyway, off the soapbox. To put it into perspective, they have cut through skin and nerves, blood vessels, fat layer and the tough fascia with sutures all the way. It takes months for a wound to mature and often even longer for nerves to sort themselves out, though that too can be never the same again. The skill of the surgeon comes in here too and permanent damage to the nerves can occur. It won’t feel right for some time. I would become concerned if pain worsens or is persistent, it keeps weeping, swelling or pinkness develops. But don’t expect to feel happy about lying on it for some time.
I never had a biopsy - it was very obvious I had GCA, so cannot help on that front, but have had a few ops in my time, and yes they do take a lot longer to heal than implied - as SnazzyD says.
As the discomfort is just around the biopsy site, then that’s what it is, not GCA.
It is a recognised way of dealing with GCA. Studies suggest that starting management of GCA with a 3-day pulse therapy using up to 1000mg/day (i.e. it can be up to double what you were given) results in a LOWER cumulative dose of pred by the end of your treatment and the reduction is often more straightforward. You haven't had anything like as much pred as a lot of us yet!
My rheumatologist arranged for me to have a biopsy the day after she first diagnosed me which clearly made a lot of sense. The result was positive which seemed to make the procedure worthwhile. I wouldn't have liked to go through such an unpleasant and invasive procedure with an uncertain result. I was left sore for some time afterwards. It seems a pity that your rheumatologist insisted on it going ahead given the circumstances.
Some time ago I complained on this forum that all hospitals aren't able to carry out an ultrasound scan for GCA, which would be far less invasive and far more likely to be accurate. PMRpro put me right as to the complications involved in training enough staff to do the job - something that can only have been made worse (like so many other things) by COVID.
Thank you. My rheumatologist has been trying to get ultrasound scan facilities and I have written to the radiology lead through the PALs about the issue so I hope it supports his case.
I had an ultrasound just under 2 weeks ago, for GCA, after 6 days of 70mg PRED. The rheumatologist spent about 1 1/2 hours checking arm pits and head. Given the 6 days of medication he said when I arrived that he did not expect to get any meaningful result, which proved to be the case as it was inconclusive. So unfortunately, unless ultrasound can be done quickly, a number of papers debate how long, it may be of little use.
After the temporal artery biopsy, the area around the scar was tender for some time, so much so that I couldn’t bear the thought of getting my hair cut. It did come right, but only after several weeks
The Surgeon who did mine was so caring. Even sent a nurse off to get a much finer needle to inject the anisthetic as no fat in that area on my face. No big scar and never had problems with it then or afterwards. Result was false negative.
Thankfully my experience of a temporal biopsy was good as I’ve had no ill-effects since, just a little itching where the hair was growing back. I had an odd experience with it though....I’d been told I needed one to confirm whether I had GCA or not but hadn’t heard about an appointment after a week so I chased them up. Early the next morning I got a call asking if I could go in on the following Friday which was fine. About 3 hours later, I had gone to visit my parents’ graves in Leicester (I live 15 miles away) & got another call asking if I could go in then & there!!! They’d obviously forgotten me previously! Long story short, I was fast tracked through & didn’t have time to be nervous or scared! ...a miracle as it was my first time ever in hospital in 70 years! I had 3 people around me...a junior doctor, a senior & the head of department!! Quite an experience! Sadly the results were positive so I have that & PMR but I have to say a big thanks to this forum as I’ve learnt so much!
Same experience here, negative result because of steroids but some thickening. My incision had to be made round a mole so it is inclined to be itchy now and then a year on!
I have had 2 negative temporal biopsies.Disappointing but I was not hopeful either as I had also been on steroids for a few weeks. I also have sensitivity around the scars especially when I put my head on the pillow and onto the latest one from 3 weeks ago. I put it down to the fact that there is not much flesh around the temple. The first one is 8 weeks old and almost pain free. I dont think it is the GCA as it is not associated with a headache and the steroids seem to be doing the trick
My diagnosis of GCA was clear without the biopsy. Bad headaches and double vision - both cleared by immediate steroid fusions and ongoing steroids etc. Fortunately no PMR symptoms. The NHS responded well despite COVID and I am now wondering what the future holds. So grateful for this forum!
I also had blurred vision and headaches but no jaw pain also cleared up after one overnight dose of pred so rheumy sure that's what it is. It took me 3 more weeks to develop PMR. So far all good with treatment
I had a positive ultrasound on my first visit to Rheumatology - had a negative TAB four days later - no surprise as I was on pred. The TAB caused some discomfort and couldn’t sleep on that side for a couple of months but okay now - no visible scar but would be covered as they shaved quite a bit off that side.
Your discomfort could be a mixture of post op and you’re GCA settling each time you reduce. It will improve with time. I suffer bad withdrawal symptoms each time I reduce with no improvement after 6.5 years - my TAB scar isn’t affected at all now.
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Temporal artery biopsy
Temporal biopsy 
Temporal Artery Location Difficulty Locating for Biopsy
Just wondering how many have had negative temporal artery biopsy?
Biopsy coming up
