I had gca confirmed last August and started on 40mg pred.Have tapered to 1mg but recently cpr and esr levels have gone up again so am now on 5mg.
During reading I found that the first half of words were missing.At first I thought it was just the way the light was on the page but no,they were definitetly gone and when I looked at the tv,the left side of faces were distorted with no eye! It was like something from a horror film as if they were melted! This lasted for around 5 mins then it gradually stopped but I had a shimmering around the outer edge of my left eye for around another 10mins. Followed by a very slight headache but otherwise fine.
Has anyone else had this?
Thanks
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monkeay
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I used to get those exact vision issues just before I got a terrible migraine headache. The shimmering sensation you talk about would happen then the pressure would come and then the words were only half there like I covered part of the word with a piece of paper. Then unbearable migraine pain.
But with your GCA I agree with SheffieldJane I would see medical help immediately to rule out anything to do with the GCA.
I agree with the others - get down to A&E immediately and get your eyes checked. Once you go blind there's no reversal so it's best to be safe than sorry. I had visual distortions three times in my first year of GCA which were disturbing enough to go to the emergency dept of my local hospital. Each time I had my pred dose raised by doctors to protect my eyes.
I have this now and again just as you describe. Doctor says it’s a kind of migraine. It predates my pmr and I have never come to any harm from it. However I think a doctor should check it out too just in case but it sounds exactly like mine.
Incredible diversity of advice from the medical profession [whats new?]
When I was experiencing this fairly frequently I was told that it was 'just' ocular migraine. Having never suffered from migraine in the past I investigated further, and since I had a flare up earlier in the year and finally had my Pred dose increased I haven't had another one since, touch wood. Not sure where that leaves things.
Another thing that I discovered on accessing my medical records was that I had been diagnosed with GCA four years ago [in the days when i had first embarked on the PMR 'journey' and hadn't found this wonderful Forum and didn't know anything about anything] - it makes me freeze up to think of what in my ignorance, could have happened. At least now, for the time being I 'only' have PMR and it's currently under control. What roller coasters we experience!
Monkey I second what others have said, check it out and get an explanation that adds up, sight is too precious to dice with [I'll try listening to my own advice !]
Because at the time, despite headaches an inability to chew and difficulty in opening my mouth because of jaw pain [and my own ignorance] I just took it to be and additional part of PMR which I had only recently heard about [NOT through the GP but by researching on line and then after three months of pain and exhaustion taking MY diagnosis to the GP who said something along the lines of 'Yes it could be PMR and put me on 25mg of Pred !]
It was only when I moved recently and went to another practice and began browsing though my old medical records that I found the diagnosis of GCA from several years ago. Looking back on this time I'm astounded but very grateful that I came out of it with my eyesight in tact apart from a Pred induced and progressive cataract.
Do you mean you were diagnosed as having GCA in August 2017? If so - and even if it was August 2016, that is a very fast reduction in dose from 40mg to 1mg - and the rising ESR/CRP is showing that.
Because you have rising ESR/CRP levels you cannot assume the visual signs are anything non-threatening and you must see a doctor and - at the very least - have your bloods checked again to be sure they are not still increasing. An appointment with an optometrist or, even better, an ophthalmologist would be advisable asap.
Thankyou for all your replies,this place is a godsend for answers and support when we are feeling anxious!!
The reduction was from aug16 ...sorry for any alarm!!
I saw my gp this morning who phoned the 'eye hospital' whilst I was there and I had an appointment with an ophthalmologist this afternoon!! He says the optic nerve of my eye is fine and that although without the results of my bloods ( nurse took them this morning) he cannot rule out GCA as the cause of my weird vision episode. He said the cause could also be from me taking Amitriptyline as this can cause dryness in the eyes.
So no extra pred until they get the results of my bloods. I've had no further sight problems today but my forehead ,esp above the affected eye ,seems a bit numb,the kind of feeling you get when a dental jag has nearly worn off !
Oh the weird and wonderful array of symptoms we get eh??
We are so lucky to have the NHS ,I really cannot fault them throughout all this.
( Although I do realise we are all not so lucky JD4pmr...shocking!)
I also didn't know that PMR/GCA could cause dry eyes. I was dubious about the amitriptyline causing my weird vision because I have taken it for years but it could be the combination of both.
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