Is this possibly GCA again?

[pamela4215]

I am looking for some advice please. I was diagnosed with PMR 4four years ago and this was followed by Giant Cell Arteritis. I was given 60 mgs Prenisolone and gradually tapered down. Unfortunately I had a flare a few months later and I was not given appropriate advice and the sight in my left eye was damaged. Since then I have been gradually tapering and two weeks ago I was able to reduce the dose to 2.5 mgs. Apart from some fatigue, I have been feeling OK. However, this morning I have started to feel twinges in my jaw and have had slight headache in my left temple and the left side of my head. My left eye is now feeling sore.

These symptoms all feel quite mild - certainly not as bad as on the previous occasions. I am just wondering whether I am making too much of this or should I perhaps speak to someone about the symptoms. I am quite frightened at the thought of further eye damage.

Thank you for any advice.

[SnazzyD]

Whilst it could be different things like neck muscle tension (can make the eye hurt), jaw joint issues or neuralgia from a virus for example, I would seek urgent advice today; you’ve already had lasting sight damage once. If it is GCA, you need medical go ahead to up the dose properly and if it isn’t, hopefully they can tell you what it is so you can rest easy. Have you tried Paracetamol yet? I can’t quite work out how long ago you were last on 60mg with your flare.

[pamela4215 in reply to SnazzyD]

Thanks for your help. Sorry I wasn't very clear. My last flare was just over 3 years ago. I will try and contact someone although it is probably difficult at this time of day.

[SnazzyD in reply to pamela4215]

Are you UK?

[pamela4215 in reply to SnazzyD]

I am in the UK and I have taken your advice and contacted my Rheumatology Dept. I am told my Rheumy will ring me back this afternoon. Thank you so much for your help.

[SnazzyD in reply to pamela4215]

Good, and as DorsetLady says 111 is another option especially if the Rheumy Dept doesn’t get back to you.

[DorsetLady PMRGCAuk volunteer]

Think you do need to get this checked, and preferably asap……it does sound suspiciously GCA-like, and of course it always in your mind, but as SnazzyD says it could be something else.

Are you still seeing a Rheumy? If so, maybe ring the helpline if you have details…or contact your GP. Failing that, then 111.

It may be a false alarm , but always best to get it checked, and please let us know….

[pamela4215]

Dear Dorset Lady

I did send you a reply but it seems to have disappeared. I am 85 so my technical skills aren't very good.

Thank you so much for your advice. I have managed to contact my Rheumatology Department and have been told that my Rheumy will be ringing me back this afternoon. I will let you know how I get on. Thank you so much.

[DorsetLady PMRGCAuk volunteer in reply to pamela4215]

Please do…And the forum does have a habit of making replies disappear, happens to us all at times.

[pamela4215 in reply to DorsetLady]

Sadly no-one got back to me from the Rheumatology Department and no-one was answering the 'phones so I decided to ring 111 as you both advised. Then strangely the pain in my jaw and head disappeared and has not returned. It was obviously a false alarm and I feel a bit stupid now but at the time I was really worried. If this does re-occur I think I will ring 111 as I can't seem to get help from my rheumy or my GP. Thank you once more for your support.

[DorsetLady PMRGCAuk volunteer in reply to pamela4215]

Good to hear pains gone, but bad on the GP/Rheumy front.

[PMRpro Ambassador]

If they don't ring you back - don't hesitate to use 111 once it is "after GP hours"

[Carrollee]

Hi Pamela I was getting all these symptoms (headache, jaw pain, teeth pain and feeling rough) two weeks ago. I was worried about GCA returning but for some reason took a covid test and it was positive. Now, just over two weeks later, I am thru it all (apart from some breathlessness). I was actually relieved it was covid and not the return of GCA. Hope it goes well for you and it’s not GCA returning. All the best 🤗

[pamela4215 in reply to Carrollee]

Hello Carrollee Covid never occurred to me. I have taken a test and it is clear but thank you for replying to me. I hope you recover fully soon. I'm afraid no-one from the Rheumatology Department got back to me and no-one was answering 'phones in the Department. I decided I would ring 111 as advised by SnazzyD when strangely the pain disappeared from my jaw and head and has not returned. I can only assume it was some sort of nerve pain or neuralgia. So false alarm this time but if it reoccurs I think I shall ring 111 immediately as I can't seem to get any help from my rheumy or my GP. I feel a bit stupid now but I was frightened at the time and really appreciate the support from the members of this forum.n Thank you again.

[Carrollee in reply to pamela4215]

Hi. Don’t feel stupid, it is very worrying. I was relieved it was “only” covid. Am glad it’s resolved itself for now. 🤗

[pamela4215 in reply to Carrollee]

Thank you

[DorsetLady PMRGCAuk volunteer in reply to pamela4215]

Don’t ever feel stupid or embarrassed any symptom that is GCA-like needs to be checked out. Much better a wasted journey or time than miss something significant.

[pamela4215 in reply to DorsetLady]

Thank you.