Temporal arteritis - finding a UK consultant

[GCAJourney]

Hi, I believe I may have Temporal Arteritis and am looking for the right Rheumatology consultant to confirm the diagnosis in the UK. Does anyone have any recommendations please?

[SnazzyD]

If you seriously think you have GCA you may not have the luxury of shopping for a decent rheumatologist unfortunately. Normally it is regarded as a medical emergency due to the risk to eyesight. Could you say why you think you have it and perhaps we can direct you a bit better.

[GCAJourney in reply to SnazzyD]

I have a history of inflammatory disease and so have been on different levels of steroids for a while and this is why the symptoms haven't been presenting as extreme. I got sent to a maxillo-facial specialist via the NHS who wouldn't test me so now I'm looking for a Rheumatologist.

[SnazzyD in reply to GCAJourney]

Where are you and do you mean a private Rheumatologist? If you are getting symptoms a GP would be a port of call even if you go private. The issue with GCA is that severity of symptoms aren’t necessarily reflective of the seriousness. Are you familiar with the tests done? If you are on steroids the dose and for how long is relevant to the likely reliability of results. Which test did the Max Fac refuse to do? Sorry about the 20 questions but they are relevant to how people here can signpost you.

[GCAJourney]

In the UK and yes I mean a private Rheumatologist. What I'd really like please is for people's views thoughts on Rheumatologists who understand GCA.

[SnazzyD in reply to GCAJourney]

What is your region or are you prepared to travel?

[PMRpro Ambassador in reply to GCAJourney]

One problem is that a lot of the ones who are really good don't do private work. Under the NHS you should be seen quickly if you really do appear to have GCA - many hospitals have a fast track system so you are seen and diagnosed quickly.

[TandemTime]

Dr Goh who is with the Nuffield in the South West I can recommend. He diagnosed my PMR. I remember he took a lot of interest in possible GCA systoms to check me out for them. Although until I joined this site I had no idea what they were or what he was looking for! Without the holidays I think you would wait 2 or 3 weeks...Privately. I then has blood tests via the GP as he wrote to them.

[keeptalking]

I have just gone through the NHS route for possibly GCA which started with a visit to my GP. She sent me straight to A & E and although l was there for a long time I was treated well and efficiently.

I protested at being asked to take 40mgs. Pred. Immediately as I knew this could give a false reading of the ultrasound scan given three days later. But with hindsight they did the right thing to persuade me to take it. As no damage to my eyes so far. 🤞🤞

All three doctors seen went by symptoms and not scan findings At this stage I can’t see how a private consultant could have dealt with it more efficiently

Why not give your GP a chance first as time is of the essence with GCA

Good luck with it

[PMRpro Ambassador in reply to keeptalking]

All the guidelines do say that high dose pred should not be delayed for testing if GCA is suspected - it may be too late even next morning as one member of the forum found, They were told to take 60mg pred immediately but it wasn't impressed on them that immediately meant NOW, They waited until next morning but woke with loss of vision in one eye.

[Bluey-1 in reply to keeptalking]

I balked at the idea of steroids as I’d had them for Oral Lichen Planus a few years previously. The doctor in eye casualty literally told me I wasn’t leaving until he’d seen me take the 60mg prednisolone put in front of me. I was hours from loss of sight. Do get to A & E if GCA is suspected. I went to Eye Casualty as I was already experiencing visual disturbances.

[PMRpro Ambassador in reply to Bluey-1]

That's the sort of doctor I like to hear about. And you did the right thing, I remember one lady who had had her first visual symptoms over about 20 mins while on the phone to her daughter. She went to the GP about 3 or 4 days later. She was incredibly lucky but I was just so mind-boggled at not dropping the call to someone and calling 999!! It could have been a stroke even of you hadn't heard of GCA!

[Bluey-1 in reply to PMRpro]

A stroke was one of the things he was worried about too. I will be forever grateful to that doctor.

[PMRpro Ambassador in reply to Bluey-1]

GCA IS a stroke actually - same thing happens, just a very specific effect. You should have him on your Christmas card list!!!!

[Bluey-1 in reply to PMRpro]

I did write to him a couple of weeks later to thank him. I also ended up speaking to him a week on from being on 60mg pred. He took 15 mins out of a busy casualty department to give me further advice. He said he was pleased I’d rang. Life is so random. I arrived at casualty just as there was a shift change and he was the registrar (I think) on duty.

[PMRpro Ambassador in reply to Bluey-1]

Being told they have made a difference makes the agonies of the ED more bearable. My daughter is in the ED - she has the joy of nights before and after Christmas Day ... She is quite good at GCA - I made sure of it!!!! Though their ED does have a protocol and it kicks in at quite a low threshold.

[Bluey-1 in reply to PMRpro]

Absolutely. I think it’s important to thank medical staff who do their best under difficult circumstances. I told the doctor he’d saved my life and that I was very grateful. He said there had been a patient who had died and he was very concerned for me. I valued his openness. Lovely man.

[KASHMIRI1 in reply to PMRpro]

Good morning PMRpro I picked up your message to Bleuy a bit late and was interested to see that you had referred to GCA as being a stroke. I have never seen this before and wondered if you have the time please could you explain it.

[PMRpro Ambassador in reply to KASHMIRI1]

There are two types of stroke but the more common one is due to a clot slowing or stopping the blood flow to areas downstream of where it happens, leading to death of nerve cells in the brain and neurological deficits. That is also what happens in GCA when various neurological deficits - visual or aural - develop due to poor blood flow.

pmc.ncbi.nlm.nih.gov/articl....

If it were presented to doctors as a potential cause of stroke - they might take it a bit more seriously.

[KASHMIRI1 in reply to PMRpro]

Thank you for your reply at this busy time. Have a great Christmas.

[keeptalking]

wow. Makes me feel even more lucky.

[Downsizer]

After result of blood tests my GP phoned me and sent me immediately to ambulatory emergency care department at my local hospital where GCA was diagnosed and i was given steroids straight away as it’s a medical emergency. I was given appointment with Consultant Rheumatologist the following week. So your first step is see a GP asap.

[Hidden]

It would be advisable going to your local A and E asap. The Christmas holidays cause appointment chaos.

[Hidden]

It would be advisable to go to your local A and E asap. The Christmas holidays cause appointment chaos.