GCA - feeling strange!

[Janeval]

I'm tapering down to 10mg from 12.5mg Pred & this is week 5 of doing this. I'm feeling very strange today- my head & face are feeling all 'fuzzy', pins & needles sort of feeling, no pain, but very odd. I did have slight pain in my temples yesterday but nothing lasting or which bothered me. I'm a bit concerned as I'm flying to Denmark next week to see my son - I'd already decided to not reduce any more until I'm back from there but also to maybe ' up' my dose the day I'm flying there & back. Any ideas on why I'm feeling like this? The fuzzy weird feeling is also around my eyes & eye sockets as well. I feel ok, no pain, but not had this before.

[Janeval]

The feeling is also down both sides of my cheeks too!

[PMRpro Ambassador]

I think you need to contact your medical team asap - is there a helpline number that is actually monitored? If no, insist on an emergency appointment with the GP who is able to contact the rheumy team for emergency advice.

[SnazzyD]

There is a nerve (trigeminal) that supplies the face and comes in near the cheekbone. You need a doctor to tell you if that is being upset by inflammation from GCA in the blood vessels in the area or some other cause and effect. I’d want to try to get medical opinion today.

[DorsetLady PMRGCAuk volunteer]

As others have said, you need medical input to check out what is causing your issues…and asap

[Janeval in reply to DorsetLady]

I've rung 111, spoken to a Clinician, told them my symptoms & they've booked me in with my doctor first thing in the morning. If it gets worse or I get pain or it starts to affect my sight then I have to call them straight back of course. I feel ok, no pain but it's just very strange & prickly all over my head & in my face.

I do have an awful lot of stress still at the moment so not sure if that has triggered something off.

[DorsetLady PMRGCAuk volunteer in reply to Janeval]

Glad you’ve contacted 111, and obviously it you need to, follow it up overnight - hopefully you won’t need to. Stress could well be a factor….and please let us know how you get on tomorrow with GP.

Hope you can get some sleep tonight.

[PMRpro Ambassador in reply to Janeval]

That's a start at least - hopefully it will turn out to be nothing much.

[Janeval]

Thank you to you all. It's just really strange, no pain, but of course it starts alarm bells ringing when anything in my head is not quite normal after experiencing the awful GCA symptoms initially before diagnosis. I have my phone by my bed but hope I won't need to use it

[SheffieldJane]

We sometimes get little warning with Cranial GCA before it is too late for our eyesight. I would urge you to obtain medical advice before flying.

[Viveka]

I experienced that on my GCA journey - head and face tingles and pricking, with the odd scalp stab. On my face my tingling was particularly noticeable on the L cheek and sometimes the chin. These were not my original symptoms. Nothing round the eyes, like you describe,though.

As this sounds continual and intrusive, and started five weeks into a new dose, it sounds like you are on too low a dose of pred, particularly as you are only a few months from the start.

Let us know how you get on.

(For future reference, sometimes you can get symptoms like this that are intermittent and light, which my rheumy calls 'escape arteritis' which you just need to monitor. I can also get them during the pred withdrawal phase.)