GCA Eye Pain

[Auditor1234]

Hi I was told I have GCA on Christmas eve and was put on 50mg of Steroids, but I still get times when my eyes hurt to move. Is this normal??

[PMRpro Ambassador]

Has the pred helped the other symptoms you had? I think eye-pain isn't necessarily GCA - GCA doesn't really directly affect the eye structure - it is the blood supply to the optic nerve and, very rarely, the retina that is the problem. I'm sure DorsetLady or Snazzy will be along soon. Unfortunately HU is playing up and not telling us there are new posts!

[DorsetLady PMRGCAuk volunteer]

As PMRpro says eyes shouldn’t hurt as such / what exactly do mean ? Do you mean when you physically look up or down or side to side? Or they seem to ache when you look from close to long range?

Or painful to open and close?

[Blearyeyed]

I found this normal on the higher steroid doses when my GCA was first diagnosed.

I found the dull ache in the eyes and general feeling of soreness was one of the last things to improve.

I do have other conditions that cause eye pain and dryness anyway , but steroids did add to that dryness and the eye soreness as well.

The pain from that feels more like pain you may have experienced off and on before though when your eyes were tired from overwork or if you had a normal headache ,and doesn't usually effect your sight, or is not quite as intense at the temple area, in the same way as the GCA may have effected the eyes . It all really depends on exactly what type of pain it is and when to be able to ascertain if it is GCA related or not.

Keep a watch on all of your symptoms , if the head or jaw pain is also increasing you should get that checked immediately.

In the meantime see if some self care will help relieve your eyes.

It does for me when I am on higher doses of various medications.

Reduce your screen time and reading for a while until it improves.This is key to reducing lots of types of eye strain .

Keep your eyes protected while you are outside .

Try using a warm damp cloth compress over closed eyes a few times a day while relaxing on a chair or on your bed.

Slow , gentle eye opening and closing exercises , just two or three each time you do it can help , try it after using a compress.

If nothing improves your eyes or they do feel worse though don't delay in getting medical advice .

[Auditor1234]

Hi all thanks for your reply. The other symptoms came and go (side of head and around the ears pain / pressure and jaw pain plus pain when eating all comes and goes, good days and bad. I find morning are usually better and as the day goes on I get worse, some days very bad in the afternoons (again do not know if other people feel poorly in afternoons?). The eye pain is at the back, like a tight rubber band when I "move" the eye, even if I am not focusing on anything.

[DorsetLady PMRGCAuk volunteer in reply to Auditor1234]

Are you still on 50mg or have you been reduced by doctors?

Sounds as if dose is not enough, and not lasting the 24hours allowing symptoms to creep back.

You need to seek medical advice and preferably sooner rather than later,,,as it’s now weekend suggest you ring 111, they may advise you to increase Pred - and then contact your GP/Rheumy Dept on Monday.

Please keep us updated.

[SheffieldJane]

I get a very unpleasant bursting sensation in my eyes, definitely brought on by too much screen time. Although I use dry eye drops, ointment and heated eye masks, the thing that really helps is having my eyes closed in a darkened room. I have been tested for glaucoma etc. an eye check would be wise. They can take a look at the back of the eye, peripheral vision and possible cataracts too. GCA/LVV.

[Sharitone]

I wonder if 50mg is quite enough. I had 3 days on 40mg when I didn't get better at all, but then dose was increased to 60mg, and that was effective. Hope it is better today. Lots of people, including me, seem to have a 'trough period ' in the afternoons and lots of us go to bed after lunch!

[USAGCA]

It sounds like you might need higher doses of prednisone or split dosing. Eye pain was a prominent symptom of mine. I was eventually put on 60 mg of prednisone because 50 mg didn’t work.

[Zebracorn]

I initially had relief from Prednisone for about 2 weeks, then my symptoms came back. I was put on Prednisolone (60 mg). That ultimately did the trick (still tapering)