Sudden problems with vision: Hi Friends! Has onyone... - PMRGCAuk

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Sudden problems with vision

Allum profile image
25 Replies

Hi Friends! Has onyone else, on Pred, suffered from vision problems? I've been on Prednisolone since August 2021. Starting on 15mgs and now very slowly reduced to 2.5mg. Last week I was doing a crossword and suddenly realised thet I couldn'd see the squares to write in! I had a big blind "hole" in my vision! The "blind patch" got quickly worse and finally I had no proper sight at all, just flashy zigzags and felt sick. I decided it was a migraine (not that I have experienced more than one - many years ago) I went to bed and fell asleep, waking an hour later with a thumping headache and feeling ill.

That was a week ago and this afternoon I had a similar experience with a round "hole" appearing in my vision path, followed by a square with zigzag outline and rainbow lights! It wasn't as severe, so I rang my optician for advice. The answer was to get myself over to A&E! As I was, by this time, feeling queesy, I just laid down to rest for a while and problem passed again.

Could this be a side affect of Prednisolone?

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25 Replies
jinasc profile image
jinasc

No and you should have taken the opticians advice................to go now and do not wait.

Any vision problems when you have PMR must to dealt with and not delayed........you could be putting your sight at risk and once its gone, its gone.

Yes, this is harsh but you really need to take notice.

Allum profile image
Allum in reply to jinasc

Oh dear, thank you. My problem was that it's at least an hour's drive, but I guess that's a small price to pay for your sight!

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Allum

yes it is - once sight gone with GCA -cannot be reversed -take it from one that knows.

So please get it checked -and optician/optometrist was spot on!

Same advice from mine 10 years ago did at least save sight in one eye….albeit that he initially thought it might be a detached retina not GCA. I will forever be grateful for his advice.

SnazzyD profile image
SnazzyD

You really should have it seen to urgently and without delay. Just because it was intermittent doesn’t mean that’s ok. Often GCA sight issues come and go before it becomes permanent. There are also other eye emergencies that aren’t GCA related that need urgent treatment too. The optician wasn’t just overreacting to cover themselves. An hour’s drive (as a passenger) is a small price if you are in trouble here. Good luck!

PMRpro profile image
PMRproAmbassador

No - and you need to get to A&E pronto just as the optician said, And sudden onset vision problems need medical advice asap.

If you haven't someone to drive you as a passenger - call 999 and tell them the symptoms. It could be GCA, it could be a stroke, it could be a migraine - only a medically qualified person can tell the difference.

SheffieldJane profile image
SheffieldJane

This happened to me the other week. I spent 5 hours in A&E and was eventually examined by an exhausted young registrar. By this time the kaleidoscope type visual effects in my right eye had gone and I had a dull sick headache. The examination was manual eg taking a pulse from each temporal artery and giving me a sight test. I went to my optician the next day as he has state of the art equipment. He has noticed a bend in my optic nerve and contemplated sending me to an Opthalmologist. In the end he decided not to but to see me in 3 months. My main concern was that he said you do not get visual effects from one eye with migraine - this is what my Rheumatologist and the hospital doctor thought it was. I did take 5 mgs extra of Prednisalone. I have had no issues since.

Seacat30 profile image
Seacat30 in reply to SheffieldJane

nhs.uk/conditions/retinal-m...

PMRpro profile image
PMRproAmbassador in reply to SheffieldJane

I think it is probably better to contact the emergency version of MECS

primaryeyecare.co.uk/servic...

which although daytime only is 7 days a week, won't have as long a wait (and more comfortable chairs). They have all the equipment - A&E rarely does.

autumnlass profile image
autumnlass in reply to PMRpro

ABSOLUTELY RIGHT!

SheffieldJane profile image
SheffieldJane in reply to PMRpro

Thank you. My optician is on this list of providers, unbeknownst to me, but he’s got all the kit and my interior eye slides going back years.

PMRpro profile image
PMRproAmbassador in reply to SheffieldJane

There you are!!!! If there was a need for more than he can see/do, you would be referred appropriately. The main reason for an optician having all those lovely toys is because they are in this system which is aimed at taking the pressure off the ED.

Annamay17 profile image
Annamay17

this happened to me two years ago. I went to A&E. they done a brain scan to check if I had a mini stroke or a small bleed. Luckily I didn’t , they said probably a migraine. it hasn’t happened since then , but don’t ignore it and hope it will go away.

BiteyDelano profile image
BiteyDelano

I get these occasionally and have been described to me as VD - visual disturbances.

They can occur in one or both eyes, are painless (but disconcerting) and last about 20 mins.

My zigzags seem to start small and get progressively bigger until they disappear.

You definitely should not attempt to drive whilst you are experiencing a VD and should make an appointment with an optician asap.

Oddly, my wife also gets them occasionally.

Good luck.

YummyBear profile image
YummyBear in reply to BiteyDelano

The symptoms you describe sound like they are related to migraine, in fact classic symptoms of migraine. I have had this type on and off for over 60 years; they can start suddenly if looking at bright sunlight, pure white snow, if a beam of sunlight enters a window or sometimes if I've eaten a large meal or being hungry. When I see a flicker of zig-zag in corner of eye, I take 2 paracetamol and after the eye is completely zig zagged across the eye, it fades and I am left with a heavy head but by that time (20 minutes) the paras have kicked in.

Allum profile image
Allum

Thank you all so much for taking the trouble to help me. It's much appreciated.

Topps profile image
Topps

I have had a few problems but never associated it with pred.

Do please go to the eye A and E department. You need these symptoms to be assessed and treated .

PMArrrrgh profile image
PMArrrrgh

Yes! I had very similar. I've been on Pred for almost 2 years now and had 2 episodes of the psychedelic wiggly worms and loss of vision for approx 30mins after and then my vision returned back to normal.

Migraine without the headache I was told by the Rheumatologist. He also did a doppler scan for blood flow through the arteries in my temples (I'd voiced my concerns regarding PMR links to GCA), that was fine but the flow through the arteries in my neck is not so good and as my cholesterol is fairly high was referred back to the GP who put me on Statins (40mg nightly Simvastatin) and I've been monitored every 6 months or so for the reduction in cholesterol, 7.6 down to 6.0 currently, not enough change so I'm apparently being referred to a Lipid clinic.

My vision has been fine since the 2 episodes, the 2nd was most pleasant TBH, I enjoyed watching the colours but I am a fan of Hawkwind so it's not surprising really. 🤭

jinasc profile image
jinasc in reply to PMArrrrgh

Try this for lowering cholesterol -

Bowl of proper porridge for breakfast followed by a whole orange........not juice, everything except the skin.

Cousin advised this by stroke clinic and the level went down within 6 months.

Exflex profile image
Exflex

Yes, for 5 days now I’m seeing a white circle (just the circumference) in left eye. I was seen by an optician yesterday and had the most comprehensive eye test with dilated pupil, retina scan (twice), peripheral test (twice) and an extended peripheral vision test, again twice. I was there for over 2hrs and the optician said he could not see anything wrong with my eyes, but would write to my GP as it could be neurological. We discussed potential GCA and I mentioned intermittent low grade pain over my left eye when I arch my brow on that side, and intermittent low grade pain on the left side of my head. He said the pain associated with GCA is like no other head pain you’ve encountered - it’s been said by members here with GCA. But only recently I read the story of someone (something ghost) having low grade head temple pain and was diagnosed having GCA on the basis of symptoms and elevated inflammation markers (I think he said ESR from recollection).

Orpheus82 profile image
Orpheus82

We frequently see people in the Eye clinic who have these symptoms and they are often due to ophthalmic migraine. However, as everyone who has replied, it is important to be properly checked to rule out other ocular causes. If it is ophthalmic migraine the problem isn’t actually occurring in the eye itself. It is in the visual pathway and due to changes in blood flow. This will often manifest itself as a scintillating scotoma - the flashing lights- followed by transient loss of visual field often in one quarter of the field. Steroids aren’t generally the culprit for these but it’s advisable to consider general health. I have had ocular migraine very occasionally and have probably been stress related. The main message here is always have any unusual visual symptoms checked out by a professional. Vision is too precious to lose!

Nagswoman profile image
Nagswoman

Silent migraine. Mine never gave me headaches. They started as a dot, which expanded slowly until I had a flattened C of shimmering triangles. Had them before steroids. Not had one for 2 years.

winfong profile image
winfong

Ocular migraines. They are bizarre, and certainly seem like something is seriously amiss. Fortunately, they are mostly benign.

Allum profile image
Allum

Thank you everyone. I did go to A&E and it was only Ocular Migraines, but they are monitoring me now and my (never to be seen) doctor will be informed, as they can't totally rule out the CGA element xx

Storm-boy profile image
Storm-boy

Hi. I also had these I have always had mild migraines (max one or two a year). After I started taking Pred I began getting these regularly until it was daily or more. 13 in one week. Rheumy sent me for MRI and a neurologist who said it was migraines. I decided to double my water intake. This has worked wonders. I’ve had two episodes in 6 months

Allum profile image
Allum in reply to Storm-boy

Oh Brilliant! That is something I can do for sure! Thank you so much.

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