Hi,
My ESR was 63 at the end of April. Started on prednisolone on 2nd of May. ESR down to 5 yesterday. Booked in for a temporal artery biopsy on the 25th of June. How many of you have had a diagnosis of GCA without biopsy? Is it worth having the procedure when it gives a falsely negative result in 40 per cent of cases and should have been done, at the latest, within 2 weeks of starting steroids? I would be grateful for any feedback.
I had the biopsy the day after I was diagnosed, which I now realise was ideal. I'd only taken 2 doses of pred and the result was very definitely positive. I don't know what I would have done if I'd been in your position. Although over quickly, the procedure isn't much fun and I'm not sure I would have been pleased to have it done and to get a false negative. Sorry, I can see this isn't very helpful to you.
I really hope that ultrasound as an alternative will be generally available soon. It's so much less invasive and they can examine a much wider area. There is a post somewhere on this forum in which PMRPro explains why the changeover to ultrasound can't be as quick as we'd like it to be.
Hello. I guess the question I would ask is, if the biopsy were to be negative would that change your management? Normally if you have compelling symptoms then it doesn’t. If you DO get a positive you know it’s all worth it. If it was me and what I know now I’d decline because there other reasons on top of the Pred that can make it negative, but that is just my opinion. At the time my world had been shattered over 48 hours and any chance of getting justification for the high dose of Pred that was debilitating I wanted it. However at that time I had no idea about the high rate of false negatives and the docs never made that clear. Mine was done 8 days after starting Pred from which I had relief within 2 hours. My ESR was only 16 even when my eyes were shutting down.
What dose of pred have you been on in the meantime? If it was a PMR-dose and you now have signs of GCA then there might be some point but if you have been on a GCA-level dose of pred I doubt there is any point at all.
The question you should ask them is will it make any difference to how they continue to manage you since the chances af it being positive are very small now. But they could well decide that as it is negative they will stop the pred anyway - with no way of knowing whether it is negative because of the pred or because the GCA wasn't in the temporal artery (not uncommon) or because it wasn't GCA in the first place.
GCA should first and foremost be a clinical diagnosis and the TAB just part of the evidence - except when it is positive when it is certainty.
Quoting your post of 5 days ago: "Got the symptoms of GCA starting 24th of April. Woke up with a worse headache than usual, tender skull and prominent temporal arteries. Went to the Drs 3 days later and was asked to do a blood test. 3 days later (my 68th birthday!) I had all the symptoms of flu with a very sore jaw and a ferocious headache. Dosing myself with parecetamol every 6 hours so could function. Woke up 3 days later with a swollen face. Cheek bones had disappeared -decided to give having my passport photographs taken for renewal a miss- did blood test that day, contacted by surgery the next to come in the following day. Urgent priority referral made that day. ESR 63 and SED raised. I was started on 40mg of Prednisolene. That was 2nd of May. "
YOUR SYMPTOMS INDICATE YOU LIKELY DO HAVE GCA.
YOUR TAPER OF 40MG PRED MAY 2 TO ? now.
IN ADDITION TO ESR YOU SHOULD ALSO HAVE CRP TESTED. [NORMAL IS <8MG/L]
QUESTIONABLE WHETHER WORTHWHILE TO HAVE A TAB AT THIS LATE DATE BUT
PERHAPS WORTH DOING???
WOULD BE USEFUL FOR YOU TO UPDATE YOUR PROFILE SO CRITICAL INFO IN ONE PLACE
Thanks for your responses. Very helpful. Helpline, consultant more or less said same as you. Consultant said 10 per cent chance. Saw Dr today. He said as far as he was concerned I had GCA and he was treating me as such. Been on 40mg of Pred for 6 weeks, going down to 30mg tomorrow for 2 weeks then if everything OK 20 mg for a month- July in Greece with daughter expecting first child on 17th. Decided not to have TAB and hope to be able to register the reason why- that it should have been done within 2 weeks of my starting steroids and this should be a uniform response across country and not subject to postcode lottery. Also NHS wasting money doing it at 8 weeks. An urgent priority referral should be just that - with a time scale depending on the context. Thanks again everyone who responded.
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