Pain around left eye & head pains

[Saintmalo]

I read Health Unlocked every day and get so much help and support from it - thank you all so much. Currently I am having continuous sharp pains around my left eye. This scares me enormously as my GCA diagnosis was almost 9 years ago and I am now told that I shall be on pred, mtx etc for life. Loosing my sight becomes a daily concern and constant sharp pains don’t help! As my condition isn’t ‘new’ I find medical help spasmodic at best. It’s a case of get on with it! Any advice/ support would be gratefully received. Do hope that you are all having a good day.

[DorsetLady PMRGCAuk volunteer]

I can fully understand your concern… and any new head pains should be investigated.

It may have nothing to do with your GCA, but that is always the first thought. Would think more likely to be migraine or cluster headache, have you tried painkillers? If they help it’s probably not GCA - if they don’t then can you increase Pred for a week or so and see if that helps.

See from post a month ago you had a flare followed by a quick reduction… has this new issue come in since then?

Have you have eyes tested recently.. if not might be sensible.

Link re cluster headaches -

nhs.uk/conditions/cluster-h...

Please let us know how things go - and fingers crossed it’s not what you think…

[PMRpro Ambassador]

Since I imagine you are having problems getting much sense from a GP - have you tried going to the MECS/CUES service to ask an optometrist?

primaryeyecare.co.uk/servic...

[piglette]

A decent dose of pred should protect you from losing your sight, so you should not worry about that.

[CoziNess]

I get those symptoms, and my central vision goes sometimes, but I've been reassured that you can never go blind if you're taking steroids. I do hope it's true.

[DorsetLady PMRGCAuk volunteer in reply to CoziNess]

but I've been reassured that you can never go blind if you're taking steroids

Not sure that’s strictly true - you need to be on a high enough dose of Pred to ensure that.

[PMRpro Ambassador in reply to CoziNess]

Only if it is ENOUGH pred. If that was true then they wouldn't be handing out 50mg plus to people with GCA would they?

[CoziNess in reply to PMRpro]

I'm not sure. Is there evidence? I only know my problem goes away..

[DorsetLady PMRGCAuk volunteer in reply to CoziNess]

If yours comes and then goes without increasing your steroids, then I would question it is totally GCA related. As we know there are other things that cause sight disturbances.

As we both said when it GCA related you need to be on a high dose to control it . Lower doses don’t-and it’s a brave person who says you can never go blind when on steroids.

[PMRpro Ambassador in reply to CoziNess]

Then it probably isn't GCA-related - plenty of evidence that being on pred doesn't protect you from GCA starting up or flaring.

[CoziNess in reply to PMRpro]

I get it when I'm tired or done to much, just like my PMR symptoms(sore sit bones and thighs). I can understand why advice has to be given very carefully though as this can have such catastrophic results.

[AtopicGuy]

I get a terrible headache around my eye (the left one, usually) about ten times a year. It builds slowly and will last for days if untreated. Eventually, it will spread across the head/scalp. Paracetamol doesn't work, but dispersible aspirin does: a single 1000mg dose, with food, if possible. I suspect it's caused by the cold sore virus irritating a nerve in the face, but have no proof of that.