Eyesight Deterioration

[greencyclist62]

Hello, me again, sorry to keep asking questions but cannot get to speak to my gp.

Started Pred in June 2024, 15mg then reducing to 12.5 after 1 month. You all know the story, reduced too quickly but just following gp's advice but have since learned a lesson.

Had a flare in Sept 2024 so then tried DL's 5 week taper and seemed to be going well until i got down to between 11 & 10mg just before Christmas. Had to go back up to 15 for 3 days to get on top of the pain but suffer side effects on 15 which make it difficult to stay on that level. Now trying 13mg but don't think it's going to be enough.

Anyway, to get to the point I am finding it increasingly difficult to see even though I have reading glasses and distance glasses. I have had to change my glasses in November to try to keep up with the deterioration but honestly feel I could be going to the optician weekly.

Does anyone else have this issue when increasing their dose?

Thank you for being so patient with all my questions, I really do appreciate the time that you all take to reply.

[PMRpro Ambassador]

Several of us found that PMR or pred or both made our focal length shift around all over the place!! Instead of new specs all the time, at least I and SnazzyD just moved our specs up and down our noses to accommodate it!!

Another factor may be dry eyes - not a good supply of good thick tears and one sign may be your eyes watering. Get some eye drops from the pharmacy or the opticians and see if that helps.

[greencyclist62 in reply to PMRpro]

Thank you I do try the moving glasses up and down my nose, much to everyone's amusement at work. I will try the drops.

[SnazzyD]

Pred can monkey about with focus and as PMRPRo said it wasn’t consistent. My optician said I’d probably need a new pair of glasses every few months as the dose changed, so not to bother unless it was unsafe. My biggest issue was changing from one depth of field to another. I had the fright of my life the first time I looked up from my book to the garden and it was blurry. Given I was long sighted I was shocked and thought it was GCA. I also struggled with moving objects and scenery when I was on high doses.

The other issue was dry eyes and I had to have watery drops by day and goopy drops at night.

[Thelmarina in reply to SnazzyD]

I had constantly watering eyes which was really getting me down. My tear ducts are not blocked but narrow apparently. Thea has brought out new drops called TheaLipid for dry eye relief that ‘restores ocular surfaces’. I have been using them since October and they have worked for me. Such a relief! Just a thought as I too was using gel and gloop!

[greencyclist62 in reply to Thelmarina]

Do you buy the drops privately, or are they available through the NHS?

[Thelmarina in reply to greencyclist62]

I buy them from my optician, who put me onto them. But I’ve seen them in pharmacies 😀

[greencyclist62]

Thank you that's very helpful.

[Perigrina]

Thank you for posting this question and the responses. I too feel my sight has deteriorated.

[Manihiki]

I didn’t experience this my first GCA flare but really have this time. I have had cataract surgery and was shocked when I had to go back to glasses to drive safely and even then my eyes are not stable! I am glad you posted this because I find it reassuring to read the comments

[greencyclist62 in reply to Manihiki]

It's scary isn't it! I never had a problem with my eyesight before and just thought I'd ask the question.

[Manihiki in reply to greencyclist62]

Yes everything puts us in combat zone. I also find and learn so much more from this site than any doctor or medical professional has explained or understands in truth. I have an amazing rheumatologist who is a lead expert but even he is short on information and all about treatment. It’s the underlying disease that I just didn’t have explained and the role of steroids and other treatments. Thank goodness for the expertise and knowledge so freely available on this website

[ladygigger]

An interesting topic and another sufferer here. I visited my optician for standard 2 year check at the weekend and was told I'd had a shift - one eye improved, the other worse so new lenses required. They also noticed a shadow on my retinal map test so they're going to try an extended test plus an OCT on the next couple of weeks, then next test in a year rather than 2. I have the added complication of Horner Syndrome after an epidural affected my optic nerve and means I have a slightly saggy eyelid, a fixed pupil, and dry eye.

[greencyclist62 in reply to ladygigger]

Yes I've been put on yearly check now as I have the starting of a cataract. I also have complication due to a retinal tear a few years ago. All good fun.

[ladygigger in reply to greencyclist62]

Cataracts can take years to grow - I've probably had mine for 10 years at least but they're still not affecting my vision, although I have noticed I'm slightly less confident driving at night.

[greencyclist62 in reply to ladygigger]

Yes I think it depends on the person as I was told that the change can be dramatic in 12 months.

[DorsetLady PMRGCAuk volunteer in reply to greencyclist62]

May also depend on Pred dose .

[proactive]

I developed cataracts very quickly after a few months on Prednisone. The optometrist I went to for a vision check said "You don't need glasses, you need surgery!" He referred me to an eye surgeon and both eyes have new lenses now - no glasses needed.

[AmberGamble]

My vision is till anything but stable after a year on Prednisolone. I am struggling atm so had my eyes tested, and I do new a new prescription but I’m aware they may change again, and again… Opthalmology advised not changing glasses when I was under their care months ago, but I’m finding it difficult to manage so I may have to!

[greencyclist62 in reply to AmberGamble]

It's difficult isn't it, to know what to do for the best. I kept my old glasses in the hope that my vision may change back if and when I am able to reduce steroids.

[AmberGamble]

I know, I’ve resisted changing for the past year but now I’m really struggling and driving is my concern. So I’m going to get the new prescription even though it might not last long!

[PMRpro Ambassador in reply to AmberGamble]

I had a decent pair for driving - but cheap frames and basic distance lenses. I didn't risk expensive lenses, especially variofocals (or whatever they are called).