Sudden GCA symptoms

[Topcar]

I've been struggling with pmr symptoms and some blurred vision since taper from 7.5 in January my GP first said it was my neck arthritis not pmr flare but arthritis responds to pain meds, my pmr symptoms remained!! he reluctantly increased my pred dose, then Thurs evening 9th April I developed a terrible pain on right side of my head and double vision I thought I'd just been too vigorous with my mixer making bread!! However the pain kept me awake most of the night and still hadn't gone next day! I rang gp who saw me in the afternoon and sent me to eye casualty as I had no right temporal pulse and tenderness on right side of head luckily they found no eye damage and only my crp was slightly raised all other tests within normal range I was started on 60mg prednisolone and apart from the blurred vision by Sunday the tenderness was gone. Eye casualty couldn't get hold of the on call rheumatologist so made me promise to call gp mon for an urgent referral which I have done. My concern though is do I have gca or not? no one seems to be able to make a decision one way or the other, although they've responded very quickly and started treatment, "will I ever know"? I haven't seen a rheumatologist before as when I asked, the GP said he was managing it. I saw a different gp Fri who asked who my rheumatologist was, as did eye casualty and both were concerned as they said I needed input from both!!! Sorry this is such a long rant but I'm feeling a bit confused and very fed up at having to go back to high dose pred!! It's lovely to have this forum as having read other people's progress I know I'm not alone with all these peculiarities and uncertainty, I'm sure the docs try their best but there's nothing like hearing from people with first hand experience!! Thanks for listening and hope everyone had a nice Easter break 🐔 🐰

[SheffieldJane]

Well done for having the wit to do all the right things. DorsetLady and other GCA experienced contributors will be along. I hope I have your presence of mind to take action if it happens to me. 🌹stick with us!

[Topcar in reply to SheffieldJane]

Thanks it was quite scary 👻

[PMRpro Ambassador]

If you have GCA then you need a rheumatologist - and I'm a bit surprised eye casualty didn't pursue it for you. The GP this week could have called the hospital - GCA is a medical emergency and I'm sure that the hospital isn't turning away query stroke or heart attack patients! However - in the absence of a positive biopsy or ultrasound result, they will treat on the basis of the clinical diagnosis made on the basis of symptoms and response to pred. I would, by the way, take what the eye people said as the truth quite happily. In many countries it is the eye people who manage GCA.

And yes, I hear you about being fed up about more high dose pred - but your sight should be safe.

[Topcar in reply to PMRpro]

Thanks for your reassuring reply, the gp was surprised that eye cas didn't pursue more tests and left it to her to fast track a referral which she said she would do immediately, I really can't fault her prompt and caring response. I can only imagine that I chose the wrong time to get this!! what with the dreaded virus taking over everything and it being a bank holiday weekend too!! Oh well back to becoming a weeble again just when my face was back to normal and I'd lost 21lbs salad whilst jogging at walking pace round the garden 😂

[PMRpro Ambassador in reply to Topcar]

If you stick to the salad (not US-style salads though) you might avoid the weeble fate

It always happens at the weekend and long weekends are particularly popular!

[Hidden]

I agree with all that's been said. At least you knew what the possibility was and are safeguarding your sight. Good luck and don't let them fob you off. 🌻

[Topcar]

Thanks I'll keep on top of it 💊

[DorsetLady PMRGCAuk volunteer]

Do I have GCA or not?

Very possibly from what you’ve said, so correct action taken by all.

You might be fed up at having to go back up, but absolutely no choice!

Hopefully you will get Rheumy appointment quickly and know definitely whether it’s GCA or not. Whatever the result then comes the next step - either a slowish taper if it is, a much quicker one if it’s not.

Keep us informed please..

[Topcar in reply to DorsetLady]

Will do Thanks for your reply 🌸