The visual change is a circle of light seen by the left eye; headache above left eyebrow and at times pain above temple. Seen by an optician last Saturday who said both eyes were healthy, but referred me to my GP as he thought it could be neurological. Appointment with GP yesterday, then made an appointment with ophthalmology and I was seen the same evening, (I think the ophthalmologist stayed behind to see me). After a thorough investigation she said ‘I don’t think you have GCA’ but will see me again on Friday to investigate further the ring of light.
I asked about a TAB and she said it was not necessary, mentioning there’s a risk of stroke associated with the procedure so they don’t do it unless GCA is diagnosed by the non invasive tests. My CRP was measured at 10, down from 14 a month ago; ESR test result pending and I’ll be informed on Friday. All other bloods including full blood count, liver and renal were normal.
I’m on 2mg prednisolone steady-state and plan to remain at the dose until the new-year. PMR was diagnosed January 2020.
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I have a follow up appointment with the ophthalmologist tomorrow for eye scan etc. Having read the above that I’ve referenced, I have a better idea what it might be. Grateful to the OP.
BTW, I was told yesterday that she, the ophthalmologist, will write to me about the warning signs of GCA and what to look out for. I think she said carry 40mg and take immediately if visual disturbances beyond what I’ve already described. Never heard a medic say that before!
for clarification to others (I’m sure you got what I meant DorsetLady) she wasn’t saying start the dose now, but as an emergency in the future should the warning signs of vision changes turn up.
I wonder what would happen to the tapering schedule if you did to take a one off hit of 40 or 50mg?
Yes that's how I read it, as a one off...but just saying it might take more than 40mg. And a one off dose won't affect your normal tapering, just might make you feel a bit odd for a few days...
A single dose does nothing to the tapering - it takes up to a week to 10 days for suppression of the adrenal axis to occur if you are in that sort of realm.
Not that I’m about to swallow 40 or 50, but say there were signs of visual impairment how many 50, 60?
The ophthalmologist said yesterday if I thought you had GCA we’d start you on IV Pred immediately. Oral Pred can take some time to get into the system. One or two hours for uncoated?
It is "Take a high dose of pred and IMMEDIATELY seek medical advice" - that means the ED usually. A GP is pointless, you will have to wait and they can't do anything anyway. Taking a high dose of oral pred on the hoof will get there just as soon as you heading for the ED and getting i.v. pred by the time they have triaged and then examined you.
How weird it makes you feel depends on you - doesn't bother some people.
Usual advise for starting is 40mg for GCA - no visual impairment.... 60mg with visual impairment.
I started at 80mg - but had already lost sight in one eye.... IV varies between 500-1000mg for 3 days, then tablets..
Weird?.... a awful lot of cortisol whooshing around your body..... so an adrenaline high....if you think normal day's level is between 5-10mg (obviously higher when in the fight or flight mode)... so over excited to put it mildly...
I was on 4 mgs of Prednisalone for PMR when my GCA/LVV was diagnosed, by ultrasound scan. I was immediately put on 40 mgs of Prednisalone. I honestly didn’t feel anything unpleasant at all, just profound relief that I was safe.
I was concerned when I was put on 1000mg of pred intravenously for 3 days (June 21), the highest I had previously been on was 30mg for PMR. I had expected not being able to sleep and very anxious. I was actually oaky. After leaving hospital I went down to 60mg and then tapered down 10mg ever 2 weeks to 20 and then more slowly. Currently on 7mg!
I haven’t heard of this until now, but Googled and read the U.K. NHS guidance. I have a follow-up hospital appointment with an eye doctor this afternoon.
I’m wondering if ocular migraine is the same as silent migraine? When I’m stressed I can sometimes get a defocus and swirling coloured visual image, usually in one eye more than the other. My doctor said to take pain killers. I tend not to have a headache but mainly visual disturbance. I panicked when I had my first episode but when I found out what it was I now realise I’m stressed and just keep calm for about 15 mins until it passes.
I’m no medic, but, based on my own experience only, sounds like ocular migraine to me. I have suffered from those ever since treatment for an aneurysm in 2005
Update: diagnosis by ophthalmology today is ‘vitreomacular traction’ which may require surgery. Spontaneous resolution occurs in 10 to 30% of cases, otherwise surgery is required to prevent vision loss.
Interestingly, it sounds like it's related to vitreous detachment, which I've had, but which is nowhere near as serious. It sounds like there are several different treatments for VMT, and surgery (and vision loss) is not always necessary.
I had the same thing about 12 years ago before PMR. Mine was a small circular blind spot. It did resolve naturally but has left some residual scar that distorts my vision. O looks like 8 , edges are not clear. Hope yours resolves itself.
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Pain like tooth infection but really bad over left eye and temple
Migraine headaches and swelling of the eyes
Unbearable headaches, GCA sight loss
