Opthomology: Is ophthalmology consultation standard... - PMRGCAuk

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Opthomology

Body_bonkers profile image
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Is ophthalmology consultation standard with GCA or do you have to demand it ?

Everything is blurred now which came on with steroids - saw my usual optician out of concern but only very slight decline in vision and eyes otherwise healthy. I was surprised when he said come back in two years.

Been asking for help with the dry eyes too (rheumatologist and optician suspected Sjogren’s but those blood tests came back normal). My eyes are often flooded with tears and nothing has helped - prescribed/non prescribed from GP and optician.

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PMRpro profile image
PMRproAmbassador

If you have dry eyes (symptom is flooding tears!) then you need good eye drops and use them at least 2x daily,

If you have problems, get an appointment with the local MECS/UES optician who will be able to do all the tests a hospital can do, sometimes more. Eye specialist appointments can be hard to come by so the service has been set up as a triage for the patients who need to see a specialist.

primaryeyecare.co.uk/servic...

Body_bonkers profile image
Body_bonkers in reply to PMRpro

Thanks PMRpro - will have to see what is available in Wales

PMRpro profile image
PMRproAmbassador in reply to Body_bonkers

nhs.wales/sa/eye-care-wales/

if you haven't found it - I went round in circles!

Body_bonkers profile image
Body_bonkers in reply to PMRpro

Well done - thanks ! This is yet another example of my care not being what it should be. The GP’’s warned about diabetes and tried to push drugs for stomach and bones but not a word on eyes. Maybe I’m considered low risk but will get them checked every 6 months and not the suggested two years. The optician offered to refer me to specialist but I’ll have to pay

Suffererc profile image
Suffererc in reply to Body_bonkers

have you tried Asda Opticians. They seem to have all the gear. We go to one in Boston, England 😊

Body_bonkers profile image
Body_bonkers in reply to Suffererc

Thanks Suffererc but unfortunately the nearest is two hours drive away

SnazzyD profile image
SnazzyD

I only had an ophthalmologist when I was in A&E being diagnosed with GCA. After that nothing further because they decided Pred three hours previously was doing the trick and it sure was . My optician however, said I should get my eye pressures checked every 3 months with him because steroids can cause an increase. He wasn’t just after my money because he did it for free. I had another checks every 6 months to watch for cataracts. My focus was all over the place and ever changing until I got to very low doses.

Body_bonkers profile image
Body_bonkers in reply to SnazzyD

Thanks SnazzyD - checks every 3-6 months is what I was expecting too so that’s yet more ‘professional’ advice to ignore !

Bluey-1 profile image
Bluey-1 in reply to SnazzyD

Snap, same as myself re seeing the specialist at Eye Casualty when diagnosed. I see my optometrist six monthly. He does pressure checks and eye scans. I do pay £9 monthly but worth it as I can have checks as required. He is also knowledgable about GCA which is a bonus. My prescription has just changed but having glasses just for reading up until 68 I can’t complain.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Not always involved in the UK - unless in the diagnosis process if that happens to be in A&E..as SnazzyD and myself. As I said before because I’d already lost sight my first few months of treatment was under direction of consultant ophthalmologist - but that is unusual.

As you have mentioned the higher doses of Pred can cause blurring, so as suggested by PMRpro best to make appointment with MECS/UES optician. .. and you really should be seen more regularly.. Pred can cause other eye issues - 2 years is too long.

Body_bonkers profile image
Body_bonkers in reply to DorsetLady

Seems like a grey area in more than one sense ! Not a word from the GP’s so guessing no services available until you actually get glaucoma/high pressure. Thanks DorsetLady

HeronNS profile image
HeronNS

In Nova Scotia my ophthalmologist continues to see me annually as long as I'm on even a vanishingly small dose of pred. Had increased ocular pressure in early days and that was monitored more closely but it returned to normal as pred dose tapered. Normally eye appointments would have to be paid by the patient as it's not part of our so-called universal medicare, but I understand in my case he can bill the public plan.

Body_bonkers profile image
Body_bonkers in reply to HeronNS

Thanks HeronNS - I have to pay for own eye tests but had raised pressure many years ago and the NHS did step in to help at that stage

Bcol profile image
Bcol

I have annual eye tests with my own optician's and when I was first put on Pred for PMR they were worried about possible Glaucoma implications so they referred me to the local MECS who saw me every six months for the first two years until they decided nothing was deteriorating. All this was free.

Bothan profile image
Bothan

I have been off steroids for 6 months when I started having same symptons. Got an appt with optician and put on 2 sets of drops, Hylo day (4 to 6 drop) Hylo night 1. No change, got appt with Opthalmic surgeon. Small catarachs and very dry eyes, found it difficult to do scan as so dro. Put in tiny little cups in tearduck to help also suggest form of blepharitis. You get warm compress, facecloth with warm water, or commercially available eyemask/eyebag in chemist. Also eyelid cleansing wipes (pharmacy). Good luck, sooo sore and uncomforfortable.

Body_bonkers profile image
Body_bonkers in reply to Bothan

Thanks Bothan - I’ve just brought a heated eye mask to try but been using warm flannel in morning which literally opens the flood gates. My eyes don’t feel particularly dry but then there are lots of tears - more like a sensation as if bulging in the eye socket

Gimme profile image
Gimme

To answer the question, I'm not sure if it is automatic or not. Certainly my GP did not send me to an opthalmologist initially in Nov 22 when I had the first PMR diagnosis. But when I spoke to the rheumatologist in Feb, he was not at all happy that I had not been referred to have my eyes checked out. Then not long after, I was having problems with my eyes and I was also having some symptoms that might have been early signs of GCA, so (different) GP called the hospital and asked the opthalmologist to see me directly and I was given an appointment for next day. I got the full check and was given the all clear for GCA.

When I saw the opthalmologist, I was prescribed Hylodual drops for dry eyes, but then I have also been told that I have a problem with the meibomian glands. The excessive tearing is because my tear layer is not good enough and the eye tries to compensate. I was also told to get a heat eye mask and some sterile opthalmic wipes to massage my upper and lower lids. tbh, the thing that gave me the most relief was the heat mask, but I found that a warm damp face cloth worked the best, applied 2 or 3 times a day, especially on first waking. The advice you read online is to persist with applying heat (not too hot) and eventually you will get a result. Luckily for me, I saw an improvement after a day or so, and I keep this up a couple of times a day. I don't get much of a problem with it now as long as I keep up the compress.

Though when I say that, I already have a positive diagnosis of dry eyes and you may not be the same. If you can't get to see an opthalmologist, I would at the very least speak to the pharmacist before embarking on self treatment. You can't be too careful with eyes. Though I would think that it would be safe enough to use the warm compress to see if that gives you any relief. It's a good excuse to relax for a few minutes, if nothing else. :)

Body_bonkers profile image
Body_bonkers in reply to Gimme

Thanks Gimme - it’s beyond ‘normal’ as had Schirmer’s test which was just 2mm and my optician used a dye which confirmed but suggested using drops up to six times a day and using heated eye mask - glad it worked for you and definitely right about using the time to try and relax !

Gimme profile image
Gimme in reply to Body_bonkers

ugh! Sorry you are still suffering then. Yes, the heat mask worked like a dream, my eyes are worst when I first wake, itchy, gritty and they stream. but if I do the mask first thing, I get a lot of relief from it. This whole business sure is the gift that keeps on giving.

Sophiestree profile image
Sophiestree

I have LVV and see an ophthalmologist twice a year on the advice of this forum. I pay for one of those but he says that due to my condition he can claim for one a year. He's very thorough and each time my prescription changes very slightly but not enough that he pushes for new glasses. I have very dry eyes and use drops a minimum of twice a day morning and night and try during the day when I remember. The worst thing for me is not just the general blurriness but the floaters. They are bang in the centre and have been like this for nearly two years now and don't seem to be going anywhere. I also have the start of cataracts which are progressing but not enough as yet to warrant surgery but he did say he would refer me when he thinks it would be the right time. Right now I have pressure in one eye so washing my face or drying it is uncomfortable. I am seeing him next week so will see what that's about. Maybe you need to try and find someone else who will take it more seriously. Feel a tad blasé to me.

Body_bonkers profile image
Body_bonkers in reply to Sophiestree

Thanks Sophiestree - agree generally consensus seems to suggest this is not taken serious enough but then my medical care to date has not been what it should be

Golf-1 profile image
Golf-1

When I started on Prednisolone March '22 I had blured vision, my GP suggested I book an eye test. As a pensioner had been having Free 2 yearly tests, after the test the Optician said that as I was on Prednisolone and possible connection to Cateracts they would arrange for me to have a Free test every 12 months.

I had my second test this week and although my eyes have not changed, the opticiam mentioned that there was a sign of dryness in my eyes. She asked if I was taking any other medication, when I said that I started on Methotrexate in March this year she said that was known to cause dry eyes and recommended I use Thealoz Duo.

I have only been using it for 2 days so cannot say if it works or not

Body_bonkers profile image
Body_bonkers in reply to Golf-1

Thanks Golf-1 and hope the drops work for you. I’ve probably tried a dozen different ones now and currently using Hysocan Extra four times a day with only slight improvement

jarn profile image
jarn

PLEASE, do not be turned aside by optician. I went blind in one eye because my optician didn't refer me to opthamologist!! So trust your instincts. Paying for a visit is less painful than blindness. PMRpro gave excellent advice, as usual.

Body_bonkers profile image
Body_bonkers in reply to jarn

So sorry to hear that jarn but thanks

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