blurry eyes: Anyone experience a Vaseline type... - PMRGCAuk

PMRGCAuk

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blurry eyes

cassey1879 profile image
16 Replies

Anyone experience a Vaseline type feeling in eye or eyes. Seems to come on worse when I lower the prednisone. Originally on 60 Dec 2014 tot down to 14 two months ago, went backup to 20 as was worried about eyes. Retina specialist has been saying for past year it is floaters, but now I told him seems worse when I lower the prednisone (plus had all symptoms return, temple headache, nose pain on that side and nosebleeds and eye paio and raised artery) He says I may be right maybe GCA related. Going to see about cataract surgery in the one eye as it is really bad. It is like a strange Vaseline like feeling, and is only when I more the eyes slightly. If focus straight ahead it is fine, but the slightest movement of eye brings this glob into my vision. Seem much better last 10 months hen I was on heavier doses of the prednisone. Just wondering if anyone else has experienced this?

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PMRpro profile image
PMRproAmbassador

I know a lot of people find that pred causes blurry eyes - but they have never described it.

I do have a large floater in one eye - which now does come and go far more than it used to. But it appeared with the PMR. Used to seem to be where I needed to look while driving but it would disappear if I screwed my eyes up. It disappeared when I was at higher doses of pred and is sort of there again now.

My optician did a retinal photograph and showed me it on the photo. The same eye sometimes feels as if it isn't doing anything - if you see what I mean. Don't really know how to explain it better. I also have always said it is like a blob of grease on my glasses.

PMRandRA profile image
PMRandRA in reply to PMRpro

Both of my eyes "went" individually, about a year apart. It started with bright lightning type flashes in the outside vision, so much so that I counted waiting for the thunder, which never came. Then a big black mass appeared, burst and lots of little and one big floater (called a doughnut!) appeared, Rushed off to Optometrist after looking up eye flashes online where they said, don't wait, go to the Opto.

They referred me urgently to hospital. Nothing wrong! Both times, a year apart.

Well, now I know that it was GCA and I was darned lucky not to go blind, but a year later I got full blown PMR/GCA and pred saved the day.

So, I have a large doughnut in each eye smack in my line of vision, , lots of little floaters, my vision is definitely impaired with cloudy areas and the goggles I have are no longer fit for purpose. But I will just carry on, next appt due in March. Lets face it, those with this weird disease know loads more about it and what goes with what and when, than the highly paid people who tell us the wrong things incessantly.

Have just realised how angry I am.

Rheumy on Monday, must hold my tongue!

Although only diagnosed 15 months ago with PMR etc, it seems I had it a lot longer than that. So perhaps it is receding after the 3/4 years that it really is.

could even be 5 years. Must get a print out of my medical record to trace it.

PMRpro profile image
PMRproAmbassador in reply to PMRandRA

They all seem to forget that the damage being done in GCA is to the optic nerve. There is something called AION - anterior ischaemic optical neuropathy. If it is low grade over a longer period you can see it in the appearance of the optic nerve where it joins the retina. So if the blood supply is still there but greatly reduced you'll see something. If, on the other hand, the blood supply is stopped altogether for a short time you may not be able to see anything until the visual loss is advanced or even total. By which time it is often too late. It's like a TIA and a full-blown stroke - the effect of TIAs goes within 24 hours, by definition.

Funny isn't it - we accept such a lot for so long and then suddenly we write something and a light bulb goes on - we are ANGRY, really angry at being dismissed. As if what we experienced is of no value or interest.

I've had PMR for a good 11 years now - I do wonder if it has finally gone but the last time I tried to go below 4mg I had sore wrists which was where flares always started. The worst thing though was the fatigue - so has IT gone but the adrenal function is a bit dodgy? Tried to persuade the GP to get me an adrenal function test but she'd never come across it. Have an appointment in March for atrial fibrillation/BP check - must write a shopping list for the medic...

autrainriver profile image
autrainriver in reply to PMRpro

There is a blood test called the AM Cortisol. Information contained in this link: mayomedicallaboratories.com...

Had this done while at Mayo and the adrenal was definitely suppressed after one month of 15mg prednisone. A good test to get when you get to low dose for an extended period of time to see if the adrenal is doing its job.

PMRpro profile image
PMRproAmbassador in reply to autrainriver

Yes, I know about the synacthen or adrenal stimulation test. I also know all about adrenal suppression and having been on pred for 6 years adrenal function will definitely have been suppressed. However, if you reduce slowly enough the adrenal glands - or rather the feedback system governing them - should start to settle down and top up the levels after about 7mg of pred. If for any reason they DON'T wake up then there is a problem and that is when the test is appropriate. My task is to convince my GP - and I can't give her your reference as she doesn't speak English.

Nap1 profile image
Nap1 in reply to PMRpro

So pro what happens if the adrenals don't wake up? I remember after 3 years of pred treating my PMR having enormous fatigue. I can't imagine after GCA what I will feel like. I am jumping the gun by a few years, I know

PMRpro profile image
PMRproAmbassador in reply to Nap1

If they don't wake up and start producing cortisol you need "replacement therapy". Which takes the form of a low dose of pred or other corticosteroid as long as you need it - probably life.

polkadotcom on this forum is in that situation.

Nap1 profile image
Nap1 in reply to PMRpro

Thank you. I kind of thought that was the answer. Not terrible. I might have to be on prednisone forever anyway.

PMRpro profile image
PMRproAmbassador in reply to Nap1

That's how I look at it...

Zhenya profile image
Zhenya

Yes I have had blurry eyes and floaters since PMR diagnosis and going on Pred about 15 months ago. The first time it happened my optician told me to go straight to Moorfields, which I duly did. They said nothing was wrong. Now I go to the optician every six months or so for a check-up ( I wear daily contact lenses), just to be sure nothing sinister is going on. It seems it is just another thing we have to contend with!

I have to say that my chipmunk face bothers me more right now...it seems to be getting worse with the accumulation of the drug I guess.

Car00b profile image
Car00b

I have just been diagnosed with glucoma probably related to steroids ,so want to get off of prednisalone as soon as possible .

I do not understand why you appear to be controlling you steroid intake .

The norm. from what I understand is to have blood tests every 6 to 8 weeks and then a desition is taken between patient and doctor as whether to lower the dose . I have been at 8 mg for the last 4 months because my esr has stayed the same ,39.

Have you been tested for glucoma ?

Also my doctor is of the opinion that it is better to reduce pred slowly not go up and down with the intake as it can make things worse.

I have a floater in each eye, they are large and a few small ones . It is a fact that prednisalone or as I have been told and read can cause cataracts and I now have the start of those however on the opticians advice I am waiting to come of the steroid before they are dealt with as she wouldn't want to much in the way of ops on the eye . Hope this helps . I am an artist and craft person so do know how annoying and scary this all is .I try not to get to hung up on blobs floating around as it can make drawing frustrating and depressing however when thing get to bad I look at the trees and hedging and you cannot see the bits bobbing here and there and it gives the mind a rest also get some thing from your optician for dry eyes it sound as though that could help .Good luck ,but do get checked for glucoma 💐💐

Reani profile image
Reani

If I was you I would increase the pred ASAP. I also had the "vasaline" effect which is exactly the way I explained it to the Dr's, along with headache and scalp tenderness. I was seeing 3 Opthamologists, 1 Retina specialist and 1 Neurological specialist, and all said I didn't have GCA. None could see a problem with optic nerve, until I lost vision in my right eye and ended up permanent damage to the optic nerve. This happened during Pred reduction when I got down to about 17.5 mg. Go with your intuition. If you think something is wrong, it probably is. I wish I would have, and I certainly do now. Don't wait until the damage is permanent.

cassey1879 profile image
cassey1879 in reply to Reani

Thank you reani, I am so depressed, was scheduled for cataract surgery next week right eye really bad. Both Retina Specialist and eye doctor saw o n Monday scheduled me. Called my dr. in Philadelphia at Wills eye, and the called back and said now way, cancel the surgery as he is not happy with the blood work. am on 20 mgs. now 10 days and may even bump up. Called University of Pa. and told to stay on what I am on, till doctor reviews. They never get back for weeks at a time and I am pretty much medicating myself. Went up from the 14 to 20 and the temporal arteries have gone down and 9 of my other symptoms, but still have some temporal pain. Thank you again.

PMRpixie profile image
PMRpixie

Yes Cassey, I have the same blurriness. For me it gets worse the more I read. Changing glass prescription doesn't help because by the time I got my new lenses my vision had changed again. My ophthalmologist seems to think my only recourse is cataract surgery. Do you have high intraocular pressure? Since I have been using prescription eye drops my eyes have hurt a lot less.

cassey1879 profile image
cassey1879 in reply to PMRpixie

Thank you for your reply. They called today and told me to cancel the cataract surgery due to my last two blood work ups.

PMRpixie profile image
PMRpixie in reply to cassey1879

So sorry Cassey. If you're like me you are yearning for some good vision. What is it in your blood test results that prevents surgery? Hang in there. This disease sure tries our patience doesn't it. I am hoping for cat. surgery in May or June.

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