After 5 days post diagnosis I have to say the NHS are moving pretty quick for me. I had my first appointment with the rheumatologist yesterday and had all sorts of tests. The next one is a temple biopsy... has anyone had one and how was it? As I have jaw claudication they are checking for GCA. Must say I’m pretty worried.
Thanks in advance
Karey
I am sure you are worried but at least it s being investigated very quickly. I hope everything goes ok and you get relief. Please let us know the outcome. Good luck 🌻🌻
Thank you x
Hello,
I was terrified but everything was moving too quickly and was too much of a shock for me to really research it properly. There is a reasonsbly high risk of getting false negatives either from the effect of the steroids, too small a sample or it just wasn’t in that bit. Opinion seems to vary as to how long on steroids is too long and I’ve seen ranges from 4 days to 6 weeks. My Rheumy in East Anglia said two weeks. Also make sure the surgeon is qualified such as a maxillofacial surgeon, not just any old sort who happens to be free as has been the case for some. They absolutely need to understand the importance of a decent sized sample and be recently familiar with facial anatomy as your nerves are at stake. My surgeon located the artery by ultrasound first and drew it on in pen.
I had it done in the end because I felt that a positive result would tell me it was 100% GCA and worth the steroids etc. After 8 days of 60/40mg it was negative and I had fairly classic symptoms. With hindsight would I have had it? No. If I was back there again? Probably because I was on the borderline of too long after starting steroids and I was clutching at straws for any light on the devastation that happened almost over night.
I watched it on YouTube because I’m like that and need to know exactly what is entailed. It is a small operation really rather than biopsy as we normally think of one but we’re not talking brain surgery as it stays above the skull. It takes a few months to settle as any wound does.
As a procedure, under local anaesthetic it is that juice that stings for a few seconds then it is numb. I could not feel the procedure at all except for aching in my scalp round the back of my head which surprised the surgeon who had done quite a few. Took about an hour, I walked out and I was driven home. V Tender and oozy for 48 hours and then slowly got better. I still get a bit achey there during steroid withdrawal or if I’m ill 9 months down the line but I get that with any ‘war wound’.
Search on the top right for this subject as so much has been posted about people’s experiences (there will always be bad ones in anything) and research. I’m sure others will reply too.
I was put on high dose steroids (50) on the Wednesday saw rheumy on the following Tuesday, increased to 60 then biopsy on the Thursday. It was positive.
It was a scary but no need to worry as I had a local anaesthetic and there was no pain. They even provided a nurse to hold my hand if I wanted to.
I am really pleased to have had it done as the positive result has removed any doubt and every time (frequently) I see my consultant it is from the base of 'I HAVE GCA'. I was lucky enough not to have eye symptoms.
I was also pleased to get GCA diagnosis as I was scared of alternatives. Like many I had never heard of GCA.
Thank you. Hope my experience is the same x
I live alone but had to have someone stay with me that night - hospital’s requirement. I had to ice the wound for 15 minutes every hour that evening. I stayed home from work the next day. I’m glad to have had it done and was also relieved to have gotten a positive result. (Not thrilled with the diagnosis, but knowing for sure took any guesswork away on where to go from there) .
Thanks for your reply. How are you now ?
Doing realitively well considering. That was 7 months ago. One flare along the way and am tapering from 15 to 12.5. Still able to work and so far have only had to take a few days off. This forum has been such a blessing. Thanks so much for asking. Best wishes with the biopsy; try not to worry. It’s fast and pretty much low pain.
You are right this forum is indeed a blessing. I’m learning very fast 😳
Hi KareyA. I had a TAB 21/2 yrs ago. Before I went to the rhuemy apptmnt I told my friend that there was no way I was having a biopsy if the suggested one as I had heard some negative "stuff" about them. Anyway the consultant reassured me that they had never had any problems as they only use vascular surgeons who take time out from dealing with the aorta. So I figured I was in safe hands and went for it. Lovely team in a nice little theatre. I was spoken to all the time and felt quite relaxed. I was given some food and a hot drink after on a recovery ward with a few others being done that day. I have had no ill after effect and I don't recall any pain as the anaesthetic wore off which really suprised me. The wound was neat and no visible scar. Mine was negative (but had been on 15mg steroids for over 2 months at that stage for pmr) but all the symptoms pointed to it being GCA so I am being treated for it along with the pmr. I would put myself in their hands again, great team. As others have said check the skills of those doing it. All the best cc 🤗
Hi. Thank you for this really reassuring. How are you doing now?
Karey, I had the biopsy immediately after being diagnosed with PMR. It was a breeze! I was in the hospital and went home that afternoon, had a tiny little incision by my hairline that is gone now and it was easier than teeth being pulled. I was lucky that mine was negative.
Brilliant- thanks
Exactly the same as Granny-B - dreaded it but not too bad, very little pain and also got a positive diagnosis which was good as knew then exactly what treatment was needed, also stopped me worrying that there was something else wrong with me as I felt so ill.
Good luck.
Temporal Artery Biopsy
Temporal artery biopsy
Temporal artery biopsy
Temporal artery biopsy 
