Diagnosed with GCA and prescribed high Steroids 4.5 weeks ago.
Booked in for Arterial Biopsy tomorrow any tips o... - PMRGCAuk
Booked in for Arterial Biopsy tomorrow any tips on how to cope and what to expect please. Trying not to let anxiety get the better of me.
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Ineedadog
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Hi and welcome!
How high a dose of pred are you on? After nearly 5 weeks at a high dose, I would ask the surgeon if they really think it is worth doing the biopsy and what they will do if it turns out negative - which doesn't mean it isn't GCA but that they didn't find the giant cells they were looking for as confirmation. There are several reasons for that - but 4 weeks of high dose pred is one of the more common ones. A positive biopsy is a very useful thing if you get one but the chances tomorrow are lowish.
I'll leave others who have had the biopsy to tell you more about it. If you are lucky it will be along the hair line and the scar will be hidden.
Thank you for the reply. Good advice which I will use to ask questions tomorrow.
My own GCA was diagnosed by a Vascular Ultrasound Scan. of my head, neck and armpits. Abnormal cells were found in my left armpit and non cranial GCA was diagnosed. Not invasive and seemed more reliable given that a negative result does not necessarily mean you don’t have it with the biopsy. The trouble is that specially trained technicians are still rare. Good luck though. I would want a sedative but I am getting braver.
I had been on high dose steroids for 6 or 7 weeks -had just dropped to 30mg from 40mg -when I had my biopsy. I nearly cancelled the appointment because I thought it was a waste of time. I expressed my concerns to one of the surgeons and she said not to worry. If there were signs, they would find them, which they did. My biopsy was positive. The procedure was completely painless and left no visible mark.
Having had a biopsy I am left thinking I would never recommend it and favour a non invasive scan, which I would insist on.
I had the temporal artery biopsy & it was painless. I was naturally anxious as I’d reached 69 years old & never been in hospital for anything other than blood tests! But it was fine, & no scarring after. Good luck.
I am number one chicken! I was so scared to have the biopsy. To my amazement it was painless and quite easy. I had a wonderful and caring doctor. I am not sure if at this point you need one. To talk your doctor.
The hospital were wonderful. There was a chap there just to reassure me, he was lovely. I was made to feel very comfortable on the operating table before they started - pillow for my knees, blankets, etc. The (opthalmic) surgeon had a junior with him and was explaining the procedure to him as he went along. As a biologist, I found this very interesting (I watch all the medical programmes on TV). I was able to ask questions and even joke with him during the procedure and all the while there was a female nurse if I needed reassurance. You need to lie really still, with your head turned slightly to the side. The procedure took about 25 minutes and I felt so relaxed I nearly went to sleep! They covered my eyes with moist cotton wool pads to protect them from the bright light. That also helped me relax.
The worst bit was the local anaesthetic which was like bee stings. You can tolerate it. Also afterwards you are put in a room to "recover " on a chair. But no food or drink was on offer and I had to ask for it - I was starving! (It was a midday op and by now, well past my usual lunchtime) They wouldn't let me go until the paperwork came through. 3 hours later. So take a good book!
For the next few days the operation site felt bruised and tender in the wound spot, like I'd been hit on the head. I was given cream (antibiotic eye ointment) to apply to the wound and told to take paracetamol. It healed nicely but the stitches took 5 months to dissolve and I ended up rubbing them off. I had no ill effects otherwise. The result came back negative. (They asked me if I wanted to see the bit of artery they had removed. It was tiny!)
I imagine experiences differ around hospitals, but I can say I was very impressed with the way they dealt with me (except the long wait afterwards!) I did ask why I couldn't have ultrasound. They just said they didn't do that here.
Good luck with yours! I'm sure it will be fine.
I am late to the game here: sorry about that. You maybe are already done with the biopsy. I had one 2 weeks ago. I’m in California. It was done in a medical office setting on a surgical table. I was given local anesthetic by injection, which isn’t comfortable, but not bad. My doctor is very skilled, and my incision was up very near my hairline, and only about an inch long! I’d seen pics online that looked long and terrible. It’s healing nicely, and I am so grateful for his careful hands. The worst part for me was that I could feel the tugging and tugging, which felt uncomfortable. Maybe I didn’t get quite enough anesthetic, or maybe that’s the downside of having such a small incision. I was also told to take Tylenol. It ached later as the anesthetic wore off and that night I had a hard time sleeping because it hurt. Not badly, just enough to disturb me. The next morning it felt fine except it felt bruised and tender for a week and a half.
Similar experience to Lenore58 and Broseley. The sorest bit was the local anaesthetic injection, after that no pain, but I could hear all the cutting and tugging and also the conversations between surgeon and nurses moaning about other staff members! It seemed very routine for them. In hospital for 8 am and out again at 11 am.
I have been left (one and a half years on) with slight scalp numbness on one side. The biopsy was done on both sides. Strips to close the wound rather than stitches and the 2 cm scars are hidden in the hair at ear level. Result positive for giant cells on one side
UPDATE
Thank you for all your very helpful replies. As suggested I asked if after 4 weeks+, would they expect to find any giant cells and if the result was negative would they still treat me for GCA. My latest blood result was checked and together we decided that it was highly unlikely that any cells would be found. As a result the biopsy was cancelled and I had an informative chat with the amazingly knowledgeable staff.
I feel confident that I am well on the road to recovery and looking forward to feeling better soon. Steroids are horrible to have to take with their many side effects, but for me they have worked very well. I am now on a planned reduction which if all goes according to plan will take about 1 year.
Don't build your hopes on it taking only a year. It is unlikely to be that fast - and rushing at it will run the risk of a flare and that will put you back. That is - unless there are plans to put you on to Actemra which can speed the reduction of pred up that much if you are in the approaximately 50% of patients for whom it works 100%.
I'm not saying this to depress you but so you aren't disappointed when it takes longer.
Probably wise not to have a biopsy and and not required if you are being treated for GCA anyway.
What side effects are you having… most can be mitigated with appropriate action and/or medication.
Please remember that although you might have planned reduction, your GCA and life has a habit of getting in the way…and upsetting the apple cart…and if you are off Pred within a year you’ll be one of the lucky ones.
You might like to have a look at this link -
healthunlocked.com/pmrgcauk...
And plenty for info on GCA in the FAQs -
