Newly diagnosed with GCA does anyone have experience of temporal artery biopsy and the ultrasound option?

[EdithWales]

The literature says it's not dependent on the treatment which I have started Does anyone know where it can be done, will travel?

[polkadotcom]

If you are being treated by the NHS it is unlikely that the ultrasound will be an option. Biopsies are usually done at your local general hospital. Could you give us a bit more detail? What symptoms, when diagnosed, current dose of steroids etc would help for a more informed answer.

[EdithWales in reply to polkadotcom]

Thank you I have private health insurance so that's not a problem. Stiff neck and headache treated with paracetamol and physio. Told by physio was improving but I was getting worse. So bad couldn't raise myself in bed because of the pain in my arms was struggling with walking as so stiff . Had blood done and ESR 121 so put on Prednisolone 40mgs immediately by the rheumatologist who I saw 4 days later when symptoms had improved miraculously. Told I had GCA and would need to see a rheumatologist. Researched the internet and found the article about the alternative ultra sound so very interested Delighted to find this forum because even married to a GP there is nothing like fellow sufferers for support

[PMRpro Ambassador]

As polkadotcom says, it is unlikely that the ultrasound will be available. When the study was done that confirmed it is good it was the research registrars who were trained to do it (doctors) and it has not yet been possible to train technicians to be able to role it out as a generally available test. It takes 6 months to train someone and that means taking them away from other duties in the meantime plus there is the cost of having the equipment and accommodation. The funding simply isn't there in the NHS.

I was watching a TV programme about GCA last week and the doctor was shown doing U/S on the patient they were following and he pointed out what he was looking for, there was no mention of biopsy at all. However - it was in Germany where it is obviously in common usage! Most scanning in Germany and here where I live in Italy is done by doctors, not by technical staff. And that, believe me, is a pricey option!

[EdithWales in reply to PMRpro]

Thank you so much. As I said the money is not an issue if it avoids an invasive procedure, I have been shocked by the diagnosis and would avoid a biopsy if possible but only found one article so it's maybe not an option. So pleased to have found you

[PMRpro Ambassador in reply to EdithWales]

I don't pay a lot for medical care here and it is superb it has to be said. The biopsy isn't too bad I don't think - the scar tends to be along the hairline. You do know that it isn't always conclusive don't you? You could ask your consultant if a negative result would change the way he treats you - it should be a clinical decision anyway. Having a positive result does mean no one argues later - the question is though if it is negative now would he change his mind.

Did you have GCA symptoms? You describe PMR perfectly and you can have a massive ESR just with PMR.

[EdithWales in reply to PMRpro]

The rheumatologist thought so hence 2 years on Prednisone I didn't have the hip symptoms though

I have read the biopsy

is inconclusive

[PMRpro Ambassador in reply to EdithWales]

Not everyone has the hip problems, some don't have the shoulder problems - every patient is a bit different.

[EdithWales]

Yes the Germans do seem to have good services

[PMRpro Ambassador in reply to EdithWales]

Not as good as they once were - they're running out of money like everyone else!

[EdithWales in reply to PMRpro]

Yes it's a problem Have been in the Welsh health service so far and it's been faultless

[PMRpro Ambassador in reply to EdithWales]

Then you are the first person I've come across who's said that! The others have truly struggled!

[EdithWales in reply to PMRpro]

This has been the Royal Glamorgan Hospital and as a former nurse I can't fault it so far.

Perhaps I have been fortunate. It's interesting that few people including myself have any knowledge of this disease and I have learned so much from friends in this Forum. It's so helpful to have others who really know what it's like.

Best wishes

[jinasc]

Edith Wales

This is the link to the Tabul Study, ndorms.ox.ac.uk/clinicaltri...

You could probably make contact with Dr Surjeet Singh.

NIHR HTA Logo

TABUL (Giant Cell Arteritis)

This clinical trial is a multi-centre blinded study to compare Temporal Artery Biopsy and Ultrasound in diagnosis of Giant Cell Arteritis funded by the NIHR Health Technology Assessment programme for four years. We plan to recruit 400 patients and follow each one for six months. It is led by Professor Raashid Luqmani and the trial co-ordinator is Dr Surjeet Singh ([e-mail], 01865 227326).

A patient information sheet (78KB PDF) and patient invitation letter (33KB PDF) are available online.

HTA Project Reference: 08/64/01

Details of the study are to be found on this website under Research pmr-gca-northeast.org.uk/re... Item numbered 8.

[EdithWales in reply to jinasc]

Thank you that's most helpful. I will make an appointment to see the ophthalmologist tomorrow and discuss it with him. I am reluctant to have an invasive procedure especially as I have read it can be inconclusive and my levels have dropped rapidly after 4 days of Prednisolone.

[Hidden in reply to EdithWales]

Hi EdithWales,

I had looked at the TABUL study previously. You need to have the ultrasound within 7 days of starting prednisolone. The TABUL study requires you to have a temporal artery biopsy as well ( for the purpose of comparison ). I don't know if it is possible to have the ultrasound without enrolling in the TABUL study.

Best wishes

[Vpankhurst in reply to jinasc]

when I was diagnosed with GCA I was under Professor Luqami at oxford and went on the Tabul study using the ultrasound technique but also had the biopsy as well. for people about to have the biopsy I found it pain free and nothing to worry about it confirmed I had giant cells in the artery. The wound healed very quickly and was no problem.

[EdithWales in reply to Vpankhurst]

Yes I made a silly fuss. Other than going to theatre it was better than the dentist. They found the giant cells. I used bio oil on the scar and 4 weeks later you wouldn't know it was there.

Best wishes

[EdithWales]

It says you need the biopsy anyway and I will have been on prednisolone for over a week before I see the ophthalmologist

Best wishes

[suzy1959]

I had the ultrasound done with private health insurance at the Nuffield Hospital in Tunbridge Wells but it was just precautionary and before I had any Pred. It was negative. Don't know if that helps.

[EdithWales in reply to suzy1959]

Thank you Suzy that's really helpful and good to know it can be done in Tunbridge Wells.

Best wishes

[Runrig01]

I had a temporal biopsy, and found it less painful than a visit to the dentist. Scar is hidden under hairline when healed. I even managed to drive home afterwards, it is really nothing to worry about. Hope this helps. Cheers Runrig

[EdithWales in reply to Runrig01]

Sorry Runrig I couldn't find you so didn't reply before. You are absolutely right, in fact it was preferable to the dentist other than I had to go to theatre albeit in my clothes and shoes. The worst for me that as a nurse I knew what they were talking about when he said pass the mosquito artery forceps. Because I am on the aspirin I had a zonking great bruise and bad black eye. However despite being 12 days on Prednisolone it was still positive and finding the giant cells it had confirmed GCA which justifies the high dose and two year steroids so it was worth it. I apologised to the Ophthalmologist for making a silly fuss.

Best wishes and thank you again it really helped.

[jinasc in reply to EdithWales]

EdithWales

Do not' bank on two years only. It took 5 years for my remission.

I only know two people where the GCA has gone into remission just around the two and a half year period. I do not want to upset you, just be warned. You can read patients stories on pmr-gca-northeast.org.uk.

Good Luck on this journey none of us chose to take.

[EdithWales in reply to jinasc]

Thank you I will read it. What I have done is look after myself better. I got into this state by behaving as I did 50 years ago and am now very good at listening to my body.

I eat healthily, have lots of rest, walk lots when I feel like it and leave everything that can be left. As it's lift changing I have changed my life. Best wishes

[EdithWales in reply to jinasc]

Very good article. There is no such group in South Wales or West of England yet a lot if research has been done in Bristol.

Best wishes

[EdithWales]

Thank you Runrig. My rheumatologist seemed to treat it very lightly but then I watched it on U Tube and was horrified. That was before I found this wonderful forum. Lesson to be learned there!

Best wishes

[PMRpro Ambassador in reply to EdithWales]

When all is said and done - most things posted online look far worse than the reality! If you are associated with healthcare you must know how far a little bit of blood can go! In fact - even having kids is enough to show THAT!

[EdithWales]

I know but this disease has made me illogical, it's the drugs!

Best wishes

[polkadotcom]

Oh dear, reading this through made me laugh out loud! I think I've always been illogical and the steroids have tried to correct that with very mixed results!