warning signs of losing eyesight?: Can anyone tell... - PMRGCAuk


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warning signs of losing eyesight?

Patchworkqueen profile image

Can anyone tell me what pre-warning signs of sight loss I should be concerned about? Seven months ago I had visual problems in my left eye, the only way I can describe it is a similarity to the circling on an ipad when opening it and closing it. Iridiscent almost sparkling white fragmented circles rotating slowly around my eye, it tended to last about 2 minutes. I found it highly disconcerting particularly as 2 eye tests in January revealed nothing wrong. I still don't know if it was connected to GCA which I was later diagnosed with.

Opthalmologist thought it could be macular degeneration or GCA, someone else suggested it could a torn retina. But no health professionals seemed to recognise my description of visual effects so none the wiser.

All I do know is that it stopped after starting course of Pred at a high dose 60mg and came back just once in all that time. Has anyone experienced anything similar?

6 Replies
DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Hi Patchworkqueen,

As you may recall I lost sight in right eye two & half years ago (GCA being undiagnosed at time). I never had any symptom as you described. Mine was classic (although I didn't know at time) of tender scalp, jaw claudication, difficulty in eating and swallowing following on from shoulder & neck pains.

As you are now on 60mg per day your eye sight should be preserved, and I would imagine that the symptoms you relate are connected to some other eye problem. However, as we all say on this forum we are not medical experts just patients that have been through most of the things you are going through at the moment, so if you are not happy then I suggest you monitor it, do a bit (or lots) more research - try the RNIB website, or helpline, and if still unhappy then go back to GP and explain your concerns. Good luck, and try not to worry too much (not easy I know). DorsetLady

Hi DorsetLady,

Did you have any warning before you lost sight in one eye or was it sudden? It must have been so traumatic for you particularly as you didn't know the cause at the time.

This site is amazing, so much helpful information and as you say from people who know about it from the 'sharp end'.

I'd guessed (dreaded) I had PMR as my mother had it and on informing my GP who up to that point had thought it was a 'stress-related illness' then arranged for tests, that was back in January this year.

I'd had a terrible headache non-stop for a month before Christmas but put it down to extreme stress and thought no more about it. Then in January I found it was becoming increasingly difficult to chew food. It was only after seeing 'jaw claudication' on the PMR/GCA website did I wonder if I had GCA as well.

I mentioned it to a locum at my surgery - my GP was on holiday - and found she hadn't even bothered to make appointments for either rheumatologist or eye specialist as I'd requested. It was my daughter who insisted on taking me back to the surgery immediately to insist on seeing a specialist urgently, if it wasn't for her insistence I'd probably have lost the sight in my eye as normal hospital appointments are running at about 8 weeks.

Having said that the treatment and speed I was dealt with subsequently were quite amazing, the hospital called and I was seen next day. I have nothing but praise for the staff at Southend Hospital Rheumatology department.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Patchworkqueen

Hi Patchworkqueen,

I had headaches, jaw problems etc for about a couple of weeks before I saw GP, who thought it was caused by a trapped nerve from my shoulder (diagnosed by her as a frozen shoulder), so she prescribed pain killers.

When these didn't work, and after another couple weeks when my right eye became blurred (starting at the bottom of my eye and working upwards after a day) I returned to surgery, seeing another GP who couldn't find anything wrong and didn't think the two problems were connected when I asked! He "suggested" I make appointment with optician, which I did.

However, before my appointment, the complete eye was blurred so, after speaking to optician, I went to local A&E dept who diagnosed GCA within the hour. And saved the sight in my other eye, for which I will always be very grateful.

Timescale - from original head/jaw pains to loss of sight - 5 weeks

From blurring of eye to loss of sight - 4 days!


A sobering response indeed. Appreciate your honesty thank you

Polywotsit profile image
PolywotsitPMRGCAuk team member

It's really sobering to hear your 'lucky escape' story, but fantastic to know that the information on the website has actually helped to save somebody's sight! Thanks so much!

I also had something similar to what you describe. I was diagnosed with PMR and put on 15 mg pred. Within a few days I started to get similar circles with jagged edges round my eyes. I was also extremely unwell with a mammoth headache and sickness. I came off of steroids and it stopped but of course pain came back from polymyalgia. Started again on preds and same thing happened so came off again. The optition said she thought I had had an occular migraine. A few days after this I developed soreness in my right scalp area and was diagnosed with GCA.

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