Hello all. This morning had my annual eye clinic tests. Am on hydroxy & myco daily + amitrip, and have been conscientiously getting NHS eye monitoring since this treatment began 3 years ago. This forum & lupus uk have been v helpful re making sure I know the monitoring someone on my sort of treatment plan needs
Today THE best nurses so far conducted my tests. What a pleasure! My clinic has v sophisticated VFT equipment, and I've been assuming I was getting tip top monitoring...BUT the young woman who gave the VFT today told me that I 'need to know' they could 'only' give me a green guide light, cause their equipment hasn't got a red guide light....apparently my notes specify I need a red guide light
Does anyone know what this red vs green guide light colour issue is about/signifies? I'll ask at my follow up clinic appt on July 17, but I'd like to be as informed as poss before that appt...
(As far as I know, I'm not & have never been colour blind)
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Barnclown
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To check whether you get optic neuritis - the inflammation of the optic nerve can cause loss of perception of colour red. Lupus can cause optic neuritis. Other than this, Plaquenil can affect colour perception and field of vision.
I'm sure there are other reasons, this is just my view.
Ah ha! Many thanks! V helpful! Now I can make a point of feeling am questioning the consultant from a stronger position....but first I'll follow your lead up online to learn what I can
Hi Barnclown I had my hospital eye checkup this week (as recommended for long term use of hydroxychloroquine, as well as Sjorgens). For the first time I was given the colour blindness test because I've been on steroids since November and apparently they can cause a problem - first time I'd heard of that, but glad the hospital was listening when I explained changes in meds since last appointment
My regular optician (specsavers, were also absolutely fantastic when I first started losing my hair/eyebrows with DLE 3 years ago, and was having to choose glasses wearing baseball hat and crying ) is also very thorough as they know all meds and lupus related conditions, I only see them every 2 years as they're happy the hospital see me every 6-9 months - if not, they would expect to see me more often, so maybe you could pick up a free eyetest voucher from a reputable optician and just have a regular eye test? they should ask you about meds/health as per normal x
Specsavers: will do: my husband is a big fan....but I've been staying with a small local family firm that has cutting edge retina scanning equipment & had been doing my 6 monthly eye check tests re hydroxy & pred before the hospital took me on last year.....so, will drop in at our specsavers now & check them out
Thanks!
Ps I laughed + gave a sob at your baseball cap tale: keep smiling!
Hi barn clown I was told exactly the same at eye clinic I have optic neuritis so test was quite important have permanent double vision so had to get prisoms in glasses my opticians have all the latest gear so they did Sheffield of vision tests wile doing the restbof tests they do it's a local single shop opticians relay good
After using most of the multi national opticians I give them a wide berth now properly diagnosed and fitted glasses make such a difference to everyday life I think it's worth a few extra pounds g
I have prisms too! V glad to learn about your situation...but v sorry you have optic neuritis: no fun! Does having O.N. limit the lupus meds you can take? Would be v interested in any details you're up for sharing.....
Yes, I am vvv cautious about optician chains...and will be vvv careful, but my feeling is: no harm checking out our market town's specsavers....just to satisfy my curiosity (good to be aware of my options locally)
Am feeling quite sad: the ophthalmology consultant who sorted me out at our clinic, & is an expert in immune patients, is moving on....my impression is that the remaining consultants are v good but not expert in cases like ours....hmmmm
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) is also very thorough as they know all meds and lupus related conditions, I only see them every 2 years as they're happy the hospital see me every 6-9 months - if not, they would expect to see me more often, so maybe you could pick up a free eyetest voucher from a reputable optician and just have a regular eye test? they should ask you about meds/health as per normal x
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