Eye Tests before and after GCA

[Brizzleben]

Hello all.

I developed PMR nearly two years ago and then GCA in February 2018, treated with Pred by infusion. Now down to 7mg / day. I've been reviewed by the eye hospital every 3-4 months and they've never been concerned about what they saw.

My last eye test prior to GCA was about 5 years ago, since which time my varifocal lenses have had quite a hard life: the coatings have delaminated and they're a bit knackered generally. I think my eyes have changed to, as I've been finding it harder and harder to see, whether at close distance or further away.

I put it off for as long as I could but three weeks ago finally dragged myself to an optician for a test and braced myself for the hard sell.

I came away somewhat puzzled: I remembered from previous tests a point when the optician hit a particular lens and everything jumped into amazing, sharp, fuzz-free, unghosted clarity. But this time it never happened. The process of "is this one better than the last one or worse than the last one" went from "much worse" to "a bit better" to "hmm not much in it but they're both a bit rubbish" One would be a grid of blurry dots, the next would be a grid of dots with ghostly shadows.

I had the test at what looks like a posh place called Ace and Tate, which are Dutch and had very impressive testing equipment. I hate being sold at and one thing I liked about them was their limited range of lenses options: they only do, "the best" they said, and none of this buy one get one free b*ll*cks - but when they came, the glasses, despite being reassuringly expensive, were disappointing. The optician hadn't changed my prescription much, saying that much of my poor vision was down to the state of my glasses, and the vision didn't improve gradually. OK for reading but anything further than a room's distance away gets increasingly blurred and subject to ghosting.

Two weeks later I had another test from good old Specsavers which was much more clunk click but basically did the same thing.

My concern is that I didn't get that moment of clarity with this test either. At no point was the lettering perfect or the pattern of lines and dots completely crisp. They said my Ace and Tate prescription was too strong at distance, adding that if I had a 100 eye tests I'd get 100 different prescriptions!

But could it be that the GCA has caused damage?

Given a good light, looking through precisely the right part of the varifocal I can form a decent image, so that suggests that my optic nerve is capable of transmitting the image if it's properly formed in my eye but maybe it's not that simple.

I don't feel like either optician really listened when I said that none of the images was satisfactory. Maybe when I recall that "aha" moment in previous eye tests I'm just seeing the past through rose tinted spectacle, as they say.

Has anyone else experience this?

Thank you.

[Yellowbluebell]

Hi, i havnt got gca but have worn strong glasses since i was 11. I did have thise 'eureka' moments until about 4 yesrs ago and now just have more 'ok' times. This was all before pmr. My optician has explained there comes a point where you have to settle for less than perfect because its near impossible to have perfect long distance AND perfect close up vision. I am extremely short sighted (-9.75) so i prefer to see more at distance and lose a bit on reading vision and i can ususlly be found reading things like my phone with my glasses on my head which i was sdvised to do by my optician.

Not sure if this is reassuring to you but i am trying to explain maybe you have reached that point where perfect long and short vision isnt possible. Good luck. YBBx

[Orpheus82]

It’s a common misconception that poor eyesight is always due to having the wrong prescription. As you have now had two tests with different optometrists and are still experiencing less than perfect vision it is likely that this is due to other eye conditions. I cannot speculate what those might be as there are a host of possibilities including your GCA. Your best option is to question your ophthalmologist at your next appointment. If you notice any sudden changes then it is wise to immediately contact your eye clinic. Meanwhile good lighting is essential. As we get older we need more light than when we are younger. It’s also advisable to have regular checks with your optometrist - a good one will not push you to buy glasses if there is no change. Glasses only focus images onto the retina but if they are still not perceived as clear then it is likely that there is an ocular problem within the eye or visual pathway that is reducing the quality of sight.

[SnazzyD]

A few things might be the case. You might have damage to the eye but extremely subtle; noticeable to a highly sensitive human but not to equipment. I’m sure if you were to see through your eyes as a 20 year old and then a couple of decades older it wouldn’t be the same. Your eyes may also be at a stage where no prescription is going to adjust for all fields of view; it’ll always be a fudge of sorts to make the best of a bad job. You may have a film of a starting cataract from Pred.

[Hellyowl]

I have recently been very frightened that I was losing vision due to having GCA for 3 years, when common sense told me it was caught in time and there was no damage to my optic nerve, I had three different conclusions from three different eye consultants at the hospital and my lenses adjusted four times before I felt my vision was good enough. But at my last visit to the hospital the consultant took the time to explain that because I am very short sighted and have been from childhood, my sight was getting worse because of this and aging. She showed me films of my optic nerves which are not straight like the majority of people's, and explained they have been like this from birth and account for a lot of my sight difficulties which are becoming more noticeable through natural aging and Glaucoma. I feel more reassured now that although my sight will get progressively worse I will not go blind. It was luck that I saw a consultant who seemed to realise I was worried and spent a bit of time with me. Boots Opticians have been very patient adjusting my prescription every three months until I was satisfied. I do wear contacts though so it is cheaper than changing spectacles.

[SheffieldJane]

I have PMR too and varifocals after detailed and thorough eye examinations. The vari- focals correct my distance vision to an extent and enable me to see prices in shops. They wouldn’t be comfortable for reading a book or e-book. My much adjusted contact lenses enable me to get by. I wouldn’t wear them for theatre or Cinema and I struggle to read some menus particularly in dim light. Bright light is now a revelation.

I have come to the conclusion that this is as good as it gets and I need some mental adjustment. I read for pleasure with no glasses at all which is a bonus but makes my eyes tired some days. I am often aware of “ floaters” and a sort of misty film that makes me rub my eyes. I probably need to have another cataract check. I am 5 years older than when ill health struck. Nobody warns you do they?

We in particular , need to be vigilant as regards eye health. My first glasses at 13 were a miraculous restoration of vision, alas - no more.

[DorsetLady PMRGCAuk volunteer]

Hi,

It may be the Pred affecting your eye sight, it does for some especially if you’ve been on high doses - but I think you should get it followed up.

Obviously as we get older our eyes, along with most other things do not work as well as they did.

As said, it could be cataract problems, or glaucoma or even macular degeneration (don't want to be alarmist) - or none of the above - but ask for referral to eye clinic. Better safe than sorry!

Keep us informed please.

[maria40]

Yes, I'm experiencing this right now. I've had GCA for nine years and haven't had much trouble with my varifocals until now. Now my experience is like yours: I went to my usual optician didn't struggle too much with the test but when the spectacles were made up I couldn't see properly at middle distance, so bad for tv and reading was not improved. Went back to optician who insisted prescription was correct but I asked for a refund on glasses and next Monday am going to a more specialised optometrist who offers an advanced eye test with all tech bells and whistles so hope this will be better. This morning my outside distance vision , still with my old specs, was blurred; this passed off but makes me suspect that GCA may be playing a part . I've had some trouble with double vision when reading as well.

[PMRpro Ambassador in reply to maria40]

I experience that too - and it isn't GCA. Probaly dry eyes ...

[maria40]

Forgot to say that I have had cataracts removed from both eyes and my usual optometrist did check for thickening.

[PMRpro Ambassador]

I have always refused variofocals - I much prefer having separate specs for distance (can't see clearly much beyond the end of my nose) and for the computer and, like YBB, simply take them off to read close to (though I'm not as blind as she is )

My husband discovered several years ago that his distance vision was better without specs than with - meaning he had to get his driving licence altered to allow him to drive without glasses! OTOH, he can't read anything without a reading prescription and even with specs struggles without really good light.

As we age our eyes change in all sorts of ways and one of the critical things is light. Your eye test is done is ideal light conditions that just don't exist in many other places. It may just be a simple question of aging - the changes start for many in their early 40s

aoa.org/patients-and-public...

Maybe like me you have been lucky - I have only noticed much change in the last few years, since my early 60s.

[maria40 in reply to PMRpro]

Perhaps I've been even luckier then, I'm 79 and these problems have only started recently.

[Jennykk]

Hi. I have had the same! Numerous trips to the optician (over the last 2 years or so) a -9 glasses prescription and being told it was the best I would get. Due to an ongoing retinal issue in one eye I had an appointment at the ophthalmology department. I have fast growing steroid induced Cataracts. Which explains a lot. One was picked up by an optician a while ago but no sense of urgency as age related cataracts grow very slowly. These steroid induced one grow quickly. Sort for the really long answer!! Good luck.

[Brizzleben in reply to Jennykk]

thank you Jennyk. NINE prescpriptions! I've had a lot of prednisilone (about 13g by now) so I'm worried about cataracts.

[Jennykk in reply to Brizzleben]

Hi, not nine prescriptions! My prescription is minus 9! Hope you get someone to look closely at your eyes.

[PMRpro Ambassador in reply to Brizzleben]

I have been on pred for over 10 years, a cumulative dose of well over 20g pred - and no sign at all of any form of cataracts. I wish ...

[Brizzleben]

Thank you all for your replies. As before, I'm so grateful for the care taken by members of this forum to hear and reply, and the breadth and depth of experience and knowledge offered.

YBB: thank you. Perhaps if the optometrists had told me that I shouldn't necessarily get a 'eureka' with these new glasses like I'd had with previous new ones, I would have adjusted my exceptions. They must see people in my age group all the time. I wonder why they didn't.

Orpheus: I'm seeking a referral from my optometrist back to the eye hospital. And thank you for the tip about good lighting. I'm finding LEDs a lot better than those compact fluorescent ones.

Snazzy: yes, I may well "be at a stage where no prescription is going to adjust for all fields of view," sigh. But cataracts can at least be ruled out as they've been identified and judged to be at too early a stage to be significant, thankfully.

Hellyowl: as with my reply to YBB, I'm beginning to see that I may need to accept some permanent deterioration if only due to normal ageing. I might try Boots.

Jane: "Nobody warns you do they?" Nope! you've given me an idea though: maybe varifocals just aren't up to the task and I should look at alternatives.

Dorset: hopefully it's not glaucoma or cataracts as I've had more people looking into my eyes over the last two years than in the previous many many. So I'm heading back to the clinic before I get new glasses and yes, I'll keep the forum posted.

Maria: I didn't know that GCA persisted. I just assumed that I was still on the pred to control the PMR symptoms: it's alarming to realise that the GCA could flare up again too.

Why did you refuse varifocals, PMRPro? I've had reservations, feeling like they encourage laziness in the eye as the hard work of focusing is done for it by the lens.

Thank you all again.

[PMRpro Ambassador in reply to Brizzleben]

Because - to be frank - I was scared of them! Some people find them very difficult to adjust to and tend to trip as a result. My wonderful optician at the time, sadly now retired, told me he wouldn't leave me with paying for specs that didn't work well for me but the price also put me off. And at the time I didn't need them.

I require quite thick lenses (not a patch on some prescriptions mentioned though) and got a sore nose unless I got the thinnest lenses available at that time. It is better now but at the time the price of the lenses was high! For the vast majority of life distance lenses that I remove to read is fine for day to day. I also have a pair for computer use which was important at the time when working - they were good enough to be able to read the printed texts I was translating and to walk from the computer to the loo as required! They live with the computer - always available as required. I used old frames and cheap lenses. The combined cost was far less than variofocals would have been. During the years of PMR and then pred my eyes have changed back and forth - no idea why it happens but I know others who have said the same. I just move the position of my specs on my nose - so cheap!!!! I have several pairs of old specs that also fulfil a similar purpose.

[Constance13 in reply to PMRpro]

I never got on with varifocals either - they used to make me feel sick and I always thought the ground was moving under me.

[prunus in reply to PMRpro]

How different our experiences can be. I inherited moderate myopia from my mother. I could not get on with bi-focals in middle age and went for varifocals and never looked back. I agree they are expensive but to me my eyes are so valuable that I would rather economise in other ways than on my eyes. I do know that the glass (or whatever it is made of) varies in quality depending on what one is prepared to pay.

[PMRpro Ambassador in reply to prunus]

I don't use bifocals either - and I don't regard what I do as economising on my eyes. I get top quality lenses and save on the frames - they are just fluff...