When do I panic? GCA symptons more severe this time.

[91066Jackson]

Have both PMR and GCA. Started at 60 mg last September (second recurrence of PMR in past 6 years) and now tapering, at 17.5 mg. Have had break-thru symptons but short-lived. This morning my left temple area is visually swollen, sore to the touch and going down to my left jaw. Rheumy has told me to head for hospital at the first sign of impairment in my vision - which I don’t notice yet. Should I panic now and head to the ER? Or wait to see if my vision diminishes? Please advise!

[Nextoneplease]

Hi there 😊

Sorry you’re having recurrence of symptoms. Whilst you don’t specifically have visual problems, with your symptoms and knowing you have GCA, I don’t think I’d be taking any chances. So I’d be heading to the emergency department if I were you, your sight is too important to do anything else.

I hope it turns out all is well xx

[91066Jackson in reply to Nextoneplease]

Thanks for your kind reply. I’m sitting here considering it. I know some people up their dosage - at least temporarily - and I might try that. Thanks again.

[Nextoneplease in reply to 91066Jackson]

You could try it temporarily but don’t leave it too long…..I expect you’ll have more replies soon…..maybe in a few hours as it’s 2am currently here in the UK, where many members are.

Take care xx

[SheffieldJane]

I really would in your shoes 91066Jackson. My Rheumatologist would always manipulate and examine that area for signs. Don’t panic at all but head calmly to the hospital and get them to examine you and treat if necessary. I don”t know if 111 would be of assistance if you want and how much delay that would add in but I wouldn’t really want to delay much with these symptoms.

[SnazzyD]

I think waiting for vision issues is potentially leaving it a bit late. The Rheumy is making the assumption that if you do get them, you still have time to reverse the damage by the time you are seen and that it comes as a convenient spot or two instead of a rapid shut down. I’m quite surprised they have said that to be honest.

[DorsetLady PMRGCAuk volunteer]

As others have said, don’t panic but please visit ER - might be a false alarm, but better to know..,than sit at home wondering.

[PMRpro Ambassador]

I wouldn't wait for visual symptoms - but if you head for the ED, take a good book and food and drink! You may be there a while ...

And don't waste time with 111 - someone rang them yesterday morning and was told there would be a call-back. They rang in the evening to apologise that they had been busy

[jinasc]

When do I panic ? Short Answer NOW. Your sight is important - you take no chances.

[Sharitone]

It isn't only about the vision. My GP told me to go to A&E with the headache etc even though my vision was ok, Why wait for it to get even more serious? If your vision dos start to diminish, it might be already too late to save it. It's not likely to get better on its own! I don't think that would count as panicking!

[91066Jackson in reply to Sharitone]

Thanks so much for responding, Sharitone. I woke up this morning to continued swelling of temple and headache as well as jaw pain. Did go in and tonight I start back at 60 mg again. So I’m glad I went and sad to be starting over again! 😘😊🙁. So appreciate your response!

[DorsetLady PMRGCAuk volunteer in reply to 91066Jackson]

Glad you went, and hopefully the 60mg will sort things, please keep us informed.

[Sharitone in reply to 91066Jackson]

Well done! But sorry for the disappointment. Better luck with the next reduction - maybe it will have burnt out by then.

[Flutterbies57]

I hope you get some answers from some who have unfortunately experienced this . I have totally got over worrying about overreacting when I have pain near my eyes . My optometrist said “if you lose your sight , come in straight away to see me”. 😅😂🤣I don’t think she realised what she had actually said . I am now paranoid about losing my sight .

[DorsetLady PMRGCAuk volunteer in reply to Flutterbies57]

Not the best thing to say -and an oxymoron to boot! 😊

Please don’t be paranoid, but aware…