GCA? or something else?

[agingfeminist]

It is almost 3 years since I was diagnosed with GCA (following a month after PMR diagnosed).

I have tapered from the 60mg for GCA down to 3.5mg fairly smoothly...(now stuck at this dose). But yesterday I developed a very odd pain under my eyebrow and extending into the area behind the eye. Not a sharp pain just a dull spreading pain if I touch just below the eye brow. No visual problems. But it is something I have never had before and feels very odd. I will take myself to the hospital ophthalmologist next week, if I can get an appointment.

Could this possibly be GCA raising its ugly head again in a different disguise??? (last time I had sudden visual problems)

But could I/should I take an extra dose of pred to see if it helps (extra 10 or 20mg just for a couple of day)?

The other unusual thing I had a week ago was numbness along top of forehead...very odd ...but that's gone.

Feeling baffled (and a little anxious). Many thanks in advance to anyone who has any idea what's going on.

[DorsetLady PMRGCAuk volunteer]

Obviously needs checking, but doesn’t sound like GCA, perhaps sinus or tension headache or even beginnings of glaucoma…..

Perhaps try ordinary painkillers initially, and if they don’t help then maybe extra Pred - and if it worsens then ER.

[agingfeminist in reply to DorsetLady]

Thank you for your wise reply. Reaching for the paracetamol now...should have done that straight away...Many many thanks...has helped steady me...

[DorsetLady PMRGCAuk volunteer in reply to agingfeminist]

Hopefully will do the trick, but please do get it checked and let us know what it it ….

[agingfeminist in reply to DorsetLady]

I sent an email yesterday to my GP and he rang this morning and told me to go off to ER. A very thorough examination by an ophthalmologist said all was well.....he doesn't know what is causing the pain but really nothing to worry about...I have another appointment for a week's time (just to check). Thank you for your really helpful reply.

[DorsetLady PMRGCAuk volunteer in reply to agingfeminist]

Good-fingers crossed it’s just ”one of those random things” but always best to check-and please keep us informed.

[agingfeminist in reply to DorsetLady]

I now know what it is! I have been puzzling over it...and realized my description of it as a nerve pain was probably helpful. I looked where the trigeminal nerve goes...and one branch goes to exactly the right spot on my eyelid! I dropped a line to my GP and he agrees it is probably a trigeminal neuralgia! Interesting that this can be associated with various autoimmune diseases but not GCA, according to the literature, But maybe there is a link???

[DorsetLady PMRGCAuk volunteer in reply to agingfeminist]

Who knows -you haven’t had shingles have you? … looks as if that may be involved. Glad you seem to have sorted it though..

[agingfeminist in reply to DorsetLady]

Docs were sure this isn't the beginning of shingles. So might have escaped that. You never know what might be lurking ahead!

[DorsetLady PMRGCAuk volunteer in reply to agingfeminist]

Can be after effects of shingles …sorry didn’t make that clear.

[123mossie]

Just a thought, if this is one side only it could possibly be beginning of shingles. Time will tell but look out for a rash/redness or spots.

[agingfeminist]

Thank you for this suggestion...didn't know about this possibility...I will also contact my GP ...what made you think of it? Many thanks. I wish it wasn't the weekend!

[Happyexplorer]

Sorry, I've come into this a bit late and so glad you had it all checked out! I just wanted to say I have had very similar occasional pains around my left eye socket since being diagnosed with GCA a year ago, sort of a deep ache, plus flickering pain across my cheek, and also a one sided head ache, a bit like when I was first diagnosed, but no scalp tenderness or vision problems. When it first happened I was very concerned re loss of sight and went to the wonderful optometrist at Specsavers who was able to take pics of the eye and reassure me, and, as you have found, it's just one of those random aches we get that wouldn't make us so nervous if we didn't already have GCA! Once reassured I didn't bother with pain killers or changing the prednisone dose, as the relief made it quite bearable. (I've found the Specsavers optometrist brilliant as it's possible to see them so quickly and have been afew times for a check during the year)

Well done getting the pred so low, even with Actemra I'm still on 7mg after a year, reducing by .5mg every few weeks when it feels right.

Fingers crossed it's not shingles and best of luck!

[agingfeminist in reply to Happyexplorer]

Thank you for getting in touch. Yes definite similarities. Difficult pain to describe..it causes a deep ache in my eye socket but is transient. You have certainly had a lot to deal healthwise over the years...you are amazingly resilient and positive. Power on my friend.(One thought...it is worth getting an annual checkup with an ophthalmologist because of the risk of pred induced glaucoma ...something else to add to the list of possible pred side effects)

[Happyexplorer]

Thanks for the kind message... and good advice! I know exactly the pain you mean, mine was/is the same but occasional, often returns when I first lower the pred dose slightly and then resolves. I think perhaps a wide variety of nerves are affected as the wretched GCA fights our artery walls, especially in head, neck, arms etc..... but we'll get there in the end I'm sure. Hang in there