Just to update… I am hoping to have a temporal biopsy this week. I am absolutely dreading it but realise it may possibly provide some answers. As previously posted, I had an ultrasound 6-8 weeks ago which showed nothing up. I have had occipital headaches for over 2 months with increasing soreness at the top and sides of my head. Wearing my reading/work glasses can really aggravate or bring on these headaches. They come and go - sometimes I feel that paracetamol helps and then other times it doesn’t. In the recent past I have had jaw aches (but not whilst chewing), sore teeth, an unusual sudden soreness in my tongue (this has only happened a few times), night sweats (which again are relatively rare), face aches in my cheeks, intermittent earache and tinnitus. Early last week I had 3 days with no headache at all, so I contacted my Rheumy in great relief - she decided not to book me in for a biopsy, but then… the headaches came back! She is getting back to me this week with a date for a biopsy. As I live 2.5 hours drive away from where the procedure will be, I was wondering if I would be well enough to drive back home after the op. Could those of you who have had a biopsy please advise? I do have the offer of a friend’s spare room nearish to the hospital but don’t particularly want to leave my teenage kids alone overnight or cause a fuss for my friend. So I would prefer to get home if I can. I realise that the biopsy might not give true readings, especially as I have been on pred for over 2 years (currently on 9.5mg pred). My Rheumy suspects that my symptoms could be caused by something similar to a spondyloarthritis condition that is affecting my neck IF it isn’t GCA, but we both want to quickly rule out GCA before heading down that investigative route. So here I am, dreading what’s to come, hoping for some answers and also that I can drive myself home safely!!! And if it is GCA, well I will have to deal with it and increase the blasted pred which will not be fun. I was skittish on 15mg so goodness knows what I will be like on 40mg or more. Another question… How quickly do biopsy results come back?
Biopsy coming up: Just to update… I am hoping to... - PMRGCAuk
Biopsy coming up
It's a long time since I had a biopsy but I'd just like to reassure you that it isn't dreadful and you will be fine. However I was also wanting to drive myself home afterwards and asked if this would be ok. My journey would take 40 minutes. They said they hadn't been asked this question before (can't believe that!) but I would be tired afterwards so would advise against it. 20 minutes into the journey home I realised I would have struggled on my own. I hope this helps.
So sorry that you are in this place of dread. In my experience the thing we dread is often not as bad as the dread itself. I hope that you find this too. I would bear in mind the possible threat to my eyesight by leaving this un-examined which would get me through, I imagine. My GCA was picked up by a specialist ultrasound scan but not in my temples. So I cannot give first hand experience of a biopsy. I wouldn’t drive after any kind of operation, minor or not. The stress when you are unwell is not advisable . You need an alternative plan that sees your teenagers supervised and you either driven home or staying with your kind friend. I wonder if the NHS had anything in place for patient transport that you would be entitled too? Could your children have a sleepover with friends or relatives?
Good luck with the biopsy. However, you do need to bear in mind that a negative biopsy does not necessarily put you in the clear. There are cases where the wrong section of artery is looked at, or Pred has dealt with the visible inflammation and shows no evidence of abnormality in the cells. I would still be paying close attention to my symptoms. Your symptoms don’t sound very arthritic to me. My relatively recent experience of a GCA/LVV dose of 40 mgs of Pred was not bad at all and with the help of Actemra/ Tocilizumab I was soon back at 10 mgs. I will be thinking of you.
Thank you x My Rheumy has mentioned that she will be probably putting me on Tocilizumab along with methotrexate following these “tests”.
Hi
I didn’t have biopsy -was booked then cancelled as it was obvious I had GCA, so can’t help on that front, but believe it’s uncomfortable-but only that.
As for driving afterwards, definitely a no-no particularly as far as you have to go.
As SheffieldJane suggested any chance of hospital transport? Whether that be nhs or a voluntary service like RVS or a locally run organisation.
Suggest you contact the hospital initially and then have a look online for volunteer drivers near me -they just charge an amount for fuel..GP surgery may know.
I had my Temporal biopsy about 3 months ago after being sent to hospital by my GP with suspected GCA at the beginning of January this year. I was immediately put on 40mg of Prednisolone as my vision was blurred along with the head and jaw pain. They referred me to the Rheumatologist who arranged various scans including the biopsy which confirmed GCA. It was done under local but I was told not to drive afterwards and like annimills I agree even though I felt ok I too would have struggled as my head felt numb and not sure how i would have reacted driving. Hope it goes ok
It would get your hair cut before the biopsy as I found I didnt want anyone near that area for quite some time. The results took about 3 days. I was told that being on pred for 2 weeks could mean a false negative, so I’m not sure of the likelihood of getting a positive if you do have GCA, when you’ve been on pred for 2 years?
I definitely wouldn’t have wanted to drive after the procedure, even to a friend’s place close by.
I had a temporal artery biopsy at the end of December and the advice was not to drive after the procedure. In terms of the biopsy itself it was quite painless Everyone was very kind and considerate. I was concerned about it all beforehand .
I had a temporal biopsy before my GCA diagnosis & at age 69 & never having been in hospital for anything more than a few stitches, I was terrified! But it was completely painless! However, I was told not to drive, despite having my car at hospital (having been told earlier it would be ok) so a friend came over & drove me back home. Also, if you wear contact lenses, you have to remove them so take glasses too! And I only had the tiniest bit of hair removed which was unnoticeable under my fringe. Good luck & hope all goes well.
Having been on pred for 2 years and given the vagaries of a TAB - I do hope the rheumy doesn't think that a negative result will rule out GCA. Fewer than 50% of biopsies have positive results which isn't a good basis for what you are looking for, there are a lot of reasons for a negative result that mean it could still be GCA. GCA causes what are called skip lesions - they are irregular and all too easy to miss both in taking the biopsy and selecting the slides to be examined. A positive result is 100% certainty it is GCA - a negative just means they didn't find what they were looking for and it becomes a clinical decision.
On that basis - I'm far from sure I would want a biopsy at all in your situation. How patients react to them seems to vary from "what's the fuss about?" to being quite shaky because they found it painful. I wouldn't drive home - are there other options?
Yes I know exactly what you mean but I completely trust my Rheumy and she really is an expert in the GCA field so I feel that she would only push for a biopsy if she felt it would possibly help to give a fuller picture. The other options would be an increase in pred I suppose. It is really difficult to have a decent conversation with my Rheumy as she works part time and is so far away - the quickest means of communication is via email which can be a bit limiting at times. I think I will try and telephone her tomorrow or at least email with a request for a call.
Hi Burroughs123, I had my biopsy last October. It was an interesting experience, and not at all frightening, but then I am a biologist and not squeamish. They did shave a small patch of hair off. The hospital staff were wonderful, so kind and reassuring, and the surgeon had a student with him and talked through the whole procedure explaining what he was doing. They gave me 1g of paracetamol before they started, but the worst bit was the local anaesthetic which stung like a bee sting. Regarding the biopsy, as long as you relax and keep absolutely still, it is fine. They covered my eyes with damp cotton wool pads to protect them from the bright light. I nearly went to sleep! They went out of their way to make sure I was comfortable before they started - pillows etc. It took about 20 minutes (he said it was a record time and it usually takes longer) and the surgeon said I had very good arteries (whatever that means). He got the student to do the stitching, which took as long as the arterial dissection, the stitches are dissolving and tiny. The nurse asked me if I wanted to see the artery they had removed. It was minute and looked like a tiny red worm. Afterwards they gave me a drink and a sandwich and I was discharged as soon as the paperwork was ready - about 45 minutes later. I felt absolutely fine. I drove home with no problems. Once the anaesthetic wore off the area was rather sore for a week or so; I felt like I had been punched in the temple. But nothing too bad, no worse than the GCA headache! I had to apply antibiotic eye ointment to the wound daily for a week. It took 3 months for the stitches to fall out/dissolve though! Hope this reassures you.
I would question the wisdom of the biopsy at this point. It is very unlikey to find anything after so long on steroids.
I had my biopsy the day after I was diagnosed, nearly 5 years ago. I was advised to take somebody with me which might have been difficult at short notice, but my granddaughter (then 17) was on school holiday and happy to come with me. We went to the hospital on public transport, but I was a bit shaky after the procedure and took the hospital advice to get an Uber home - all pretty simple for me as it was Edgware Hospital and I live in north London. In my case I think the procedure was useful as I had only taken one dose of pred so there was a very definite positive result. It isn't the worse thing that one could undergo, but it is definitely uncomfortable. The doctor explained to me that they can anaesthetise the surrounding area but not the artery itself as it would collapse.
I don't think it would be advisable to undertake a long drive after the procedure, and I can't help echoing PMRpro (who knows far more than I do by the way!) in wondering whether it's worth it at all in your circumstances.
I had a temporal artery biopsy (positive) last year and it only required an incision of around 1 inch - and no post-op pain. I did have light anesthesia, and that is why you would probably need a driver post-op. Our hospital would not let one drive after anesthesia. Your friend’s place would probably be a good idea because of that.
I had the biopsy, which only involved a local anesthetic at the removal site. I drove to and from the clinic, about 30 minutes each way. You have a much longer drive, so you may want to arrange a ride just to be safe. The procedure itself was simple and only took 20 minutes. I had minimal soreness after the anesthetic wore off.
I had a biopsy and was advised not to drive ,although after resting I felt absolutely fine , They explained exactly what they were doing and all that was required of me was to keep as still as possible. My result was within a couple of days ,unfortunately it was positive GCA , I started on 75mg of prednisolone and after 3 years I am down to 4 mg . It has been a long haul but it has not stopped me walking ,gardening ,decorating or dancing , I have had excellent advice throughout . Good luck w ith the proceedure .
Try not to worry, I was quite scared of the procedure and I’m a retired nurse!! It not a awful as you think it will be I promise and worth it to reassure yourself on the diagnosis, although sometimes it can be inconclusive. Good luck👍
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