Still pushing for GCA diagnosis…

[AgathaC]

Morning. So many of you were wonderful when I first posted on here 3 days ago. I revisited A & E on Sunday who made an emergency referral to Rheumatology as, again, I was presenting with GCA symptoms but clinical diagnostics were all clear. The referral was in the form of a phone call with yet another Rheumatologist who emphatically said that it couldn’t be GCA because I’m too young (53) and my ultrasound in April was negative. I have been passed to Neurology. My heart sank. Any advice HUGELY appreciated.

[RoadTrip]

I was diagnosed with GCA at 55, but had raised blood markers as well as various other symptoms. My ultrasound was inconclusive as had been on 70mg pred for 6 days before it, so hospital rheumie was not expecting to get any good results.

Can only suggest that you go down the private rheumie route if able to afford it. I have one, who I have never seen f2f, my choice, but who is confident of my diagnosis even given my age!

[AgathaC in reply to RoadTrip]

This is really helpful thank you. I have emailed a private Rheumatologist and am waiting to hear. My bloods are unremarkable and my ultrasound in April was all clear but interesting to hear you were told that a conclusive result wasn’t anticipated. I too had been on 60mg of Pred x 6 days when ultrasound was done but was assured that this was proof that I didn’t have it and this result is still being wheeled out whenever I query it.

[RoadTrip in reply to AgathaC]

As soon as I arrived for the ultrasound the Rheumatologist asked how long on pred, as soon as I said 6 days he said results were very unlikely. He did try, spending about 1 1/2 hours looking on temples and arm pits but found nothing conclusive. He said not surprising given pred dose.

[AgathaC in reply to RoadTrip]

This is really interesting, this is absolutely not what my Rheumatologist said when I arrived for my ultrasound…

[PMRpro Ambassador in reply to AgathaC]

It depends on which study you read! There have been studies claiming there is still inflammation to be identified after several weeks on high dose pred. Others found it was already gone - if of course it was ever in that length of artery.

[RoadTrip in reply to AgathaC]

Might be worth reading thread by feathercraft re: GCA diagnosis, not all Rheumatologist, private or not have the same views on GCA!

[AgathaC in reply to RoadTrip]

Will do, thanks so much.

[PMRpro Ambassador]

How long will you have to wait to see the neurologist? Have you also been to get a full eye exam to look for signs of AION - dilation of the pupil so they can examine the retina?

In the meantime it may be a good idea to pursue the private option and hope for a more broadminded doctor who won't dismiss your symptoms out of hand.

[AgathaC in reply to PMRpro]

Haven’t heard about Neurologist yet and I had a full eye check with emergency eye doctor when GCA was first suspected back in April. Vision much more blurry now. Will chase for a private appointment. Thanks again.

[PMRpro Ambassador in reply to AgathaC]

SOMETHING must be causing the blurred vision - some curiousity seems required.