GCA what to look out for

[Caulkhead63]

what symptoms should I be looking out for? I'm due a eye test as need stronger glasses. Do I say I have PMR?

[DorsetLady PMRGCAuk volunteer]

Yes you do tell optometrist you have PMR …this link explains GCA simply -

rnib.org.uk/eye-health/eye-...

[PMRpro Ambassador in reply to DorsetLady]

Very good article but a few questionable bits of info! Such as age - over 60, no, it's over 50 but only less likely under 50, can still happen. And headache - no, not necessarily the first sign/symptom. No doubt there is more ...

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

True -but whatever you read has “missing bits” thought it was easier to read for a newbie than some.

[PMRpro Ambassador in reply to DorsetLady]

Very true

[123-go]

When you book your eye test it would be a good idea to ask for an OCT scan which costs around £10 at high street opticians. This explains:

nhs.uk/Services/UserControl...

[SheffieldJane]

As I have said often. My optician has state of the art equipment. On top of eyesight tests, he thoroughly tests my eye health, peripheral vision, glaucoma, back of the eye examinations and more. He understands GCA and compares the slides he has of my eyes for any changes. I opt for this every 6 months and pay (U.K.) £60.00. It is probably overkill but it reassures me. I was told years ago that I had the beginnings of cataracts, apparently this is no longer the case. Dry eyes etc. are treated and anything relevant is conveyed to the GP. I have been referred to an Opthalmologist for a chronic eye infection when I was on Tocilizumab. He was more interested in the signs of old exopthalmic goitre from my 40 year standing Graves Disease (thyroid). I have non cranial GCA but thankfully it has not yet affected my temple arteries or optic nerve.

[Kendrew in reply to SheffieldJane]

Hi Jane,

I too have a fairly clued up optician and pay for more frequent eye checks and have all those 'other' checks done too.

I've been told I have the beginnings of cataracts but they've not got any worse over past few years so I'm really interested in your comment;- "...apparently this is no longer the case"

Are you saying the cataracts have somehow healed themselves (didn't know that might be possible) or that you didn't have them after all?

[SheffieldJane in reply to Kendrew]

It’s weird isn’t it? I can only think that they were mistaken initially or like you the beginning of Cataracts has got no worse over the years so he doesn’t regard it as a significant issue. It only struck me as odd after I got home. I don’t think they heal up or go away. I will ask for clarification when I next go.

[HeronNS in reply to SheffieldJane]

A couple of years ago my eye doctor mentioned I had the beginning of cataracts. Last year I asked him about that as he didn't mention it again and he basically brushed off the question. No comment at all at the latest appointment so I can only assume that they are developing extremely slowly. Doubt they have anything to do with pred. An acquaintance of mine said hers started the same way. Nothing, nothing, nothing for several years and then, apparently rather quickly, they became a nuisance, and she has now had the operations. She didn't need an eye examination to know when they were needing treatment because her vision became so poor she had trouble reading.

[SheffieldJane in reply to HeronNS]

That will be the case with Kendrew and me as well I imagine.

[Kendrew in reply to SheffieldJane]

Thanks 👍 I'm picking up my new prescription sunglasses next weekend so I might have a chat about my cataracts then. It would be nice to think they might remain in a kind of 'dormant' state..if only for a while.

To be honest, I'm not too phased at the thought of needing them sorted in future. I'd relish the idea of not needing glasses anymore and probably pay to have a multifocal lens replacement.

I treat my cataracts though with the same respect I do any of my potential pred side effects and try to do everything I can to at least slow down any further deterioration.... I stay out of the bright sunlight and always wear my sunglasses. Even my regular glasses have a protective filter on them.

Thanks for replying.

[SheffieldJane in reply to Kendrew]

Yes me too. I have positive feelings about the prospect of that operation too. It makes sense to invest in the best you can afford.

[Nextoneplease in reply to Kendrew]

“and probably pay to have a multifocal lens replacement”

I’ve had my cataracts done Kendrew, and in retrospect, that’s the one change I’d make. I can see distances pretty well without specs now, but am constantly putting on/off reading glasses, varifocals for things like cooking, sunglasses in the garden…..If it’s financially feasible, I’d say that from my experience, multi focal lenses would be worth it 😊x

[Kendrew in reply to Nextoneplease]

Thankyou. Appreciate your thoughts and advice.

[Nextoneplease]

Hi Caulkhead 😊

Yes, it would be wise to say you have PMR, and also to tell the optician what dose of steroids you are on, so they are fully informed.

Like SJ I have a full eye examination at the opticians every six months or so, with up to date equipment - as I have GCA I find this reassuring and worth the cost (I pay £14 a month and this includes 30% off the cost of new glasses, as well as the eye scans) x

[HeronNS]

An ophthalmolgist is my regular eye doctor. When I saw him after PMR diagnosis (I purposely booked my regular appointment a year early and as long as I'm on pred I see him more frequently than before) I did tell him as I particularly wanted to be checked for any signs of GCA. This he was able to do. He also found my ocular pressure was increased - this can be a pred side effect. Fortunately although raised it was not quite high enough to mean I needed to use drops, and as my dose was tapered the pressure came down to normal . No sign of GCA by the way. However he did chat to me while doing the exam, told me more about pred than my GP had, and also mentioned that GCA should be treated as quickly and as seriously as a stroke. My GP hadn't even mentioned GCA to me.

[SheffieldJane]

I would have been devastated at 40 too. I am much more accepting of life’s trials and tribulations these days.