Sight and GCA

[prunus]

Can some people just suddenly loose their sight without any warning when they have GCA or is it like I had when it comes and goes? What have other people experienced?

[PMRpro Ambassador]

I'm afraid so - it is thought that about 1 in 5 GCA patients have visual loss as the first noticeable symptom. In retrospect, many realise they DID have some signs such as brief episodes of double vision in the morning or mild symptoms of PMR that they had put down to aging but nothing that sent them to the doctor. Such patients MAY recover vision if the high dose steroids are started within a very short time but that is very unusual and usually once it is gone, it is gone. There are a few members of the forum who were diagnosed after sight loss and never recovered the vision in that eye. Once the vision is gone in one eye, the chances of losing it in the other eye is very high, even with high dose pred.

[prunus in reply to PMRpro]

Many thanks for that. Think of you with all that snow and however picturesque prefer to be here where we are still green but frosty. Last night temp down into lower negative readings - what is yours?

[PMRpro Ambassador in reply to prunus]

Last week it was about -15C overnight and never got above freezing all day. Snowing now and so it isn't quite as cold, but -5 to -10C overnight is normal. It's fine - there is no wind and that makes a big difference, in some ways it feels warmer/less cold than the UK!

[DorsetLady PMRGCAuk volunteer]

Many on here know my story, but I’ll repeat it for you as you may not.

I had undiagnosed GCA for well over a year (so obviously no medication). Initially treated for frozen shoulder whic made things worse, not better, followed by the inability to get out of bed easily. Fatigue followed, and about 15 months after initial symptoms the typical head problems - tingling scalp, jaw claudication etc joined in.

My sight problems as follows-

Day 1 - slight blurring in bottom of eye in evening (thought I might have got a piece of grit in it - been out in strong winds

Day 2 - same effect

Day 3 - blurriness moved up right eye slightly - emergency appointment with GP. He couldn’t find anything wrong and when asked if any connection to other symptoms he reply “no! Just see your usual optician and let me know results.”

Day 4 - during day blurriness travelled up to cover complete eye.

Day 5 - attended A&E - GCA diagnosed, Started 80mg - on for 2 weeks until Ophthalmologist happy other eye saved.

I may have saved some sight in right eye had I gone to A&E earlier, but it would only have been partial, and probably would have caused more trouble in the long run.

I had never heard of PMR or GCA prior to diagnosis. Unfortunately it would appear neither had my GP!

[piglette in reply to DorsetLady]

Did your GP ever apologise?

[DorsetLady PMRGCAuk volunteer in reply to piglette]

Well.... not exactly, but I think she did realise what a mighty mistake she made! The look on her face when I recounted what had happened in hospital was priceless.

[piglette in reply to DorsetLady]

I hope her expression helped, I just cannot imagine what I would have done to her.

[DorsetLady PMRGCAuk volunteer in reply to piglette]

See pm

[prunus in reply to DorsetLady]

That is frighteningly quick to loose sight in five days. Mine also in the right eye went completely opaque from time to time for short periods. This continued over a few months and as I've said it was nine days in hospital before they got to GCA.

[PMRpro Ambassador in reply to prunus]

It is said that once visual symptoms start, there is about a week to avert sight loss. Probably doesn't apply to everyone but once it starts I suppose there is simply increasing damage to the optic nerve and eventually a point is reached where it falls over the cliff.

[prunus in reply to PMRpro]

The more I read here it makes me realise I could have been been much worse. It is a lottery whether one has a GP who is on the ball or not where GCA is concerned. I had never heard of it before and remember getting pen and paper so I could write it down correctly in my hospital bed in order to tell the family.

[Telian in reply to prunus]

I was having slight visual disturbance for many years and being treated for migraine. I said they weren't migraines, which I'd suffered for 10 years when going through the change the same as my mother. However, only when we got a new GP at our surgery did anything positive get done. At that point he told me he was monitoring me for something that would cause irreversible blindness but said no more. He sent me to eliminate TIA first of all as I had facial numbness on the affected side. Tests were negative and migraine mentioned again! Then my vision worsened - I couldn't see at all in one eye with the worse headache on that side that I couldn't lift my head. I went back to the new GP, who said enough was enough and fast tracked me to rheumie and I was diagnosed with GCA within 24 hours. I had a positive ultrasound with a negative biopsy a few says later, once you're on steroids it reduces the inflammation making it harder to find - they have to guess where it might be by prodding and asking where it hurts the most before they choose where to open up! My now regular GP saved my sight no doubt.

[prunus in reply to Telian]

Thanks for your reply - very interesting to me. Like you I also get vision problems and my son had me up the prednisolone. I was reluctant but it has worked and my vision has stabilised.

[PMRpro Ambassador in reply to prunus]

And that needs to be reported to your rheumy - it very possibly means the GCA is still active and the inflammation not entirely under control.

[prunus in reply to PMRpro]

I don't see her 'til August. It should have been this January when I would have waited twelve months since the last appointment. Then last September I got an unexpected letter putting it back to August. My OH would like me to have a different rheumy, but how do I get one? When I had a relapse two years ago I could not get hold of her and finally sent a letter by recorded delivery because a certain member of PMRGCA was appalled by how I had been treated then.

[PMRpro Ambassador in reply to prunus]

I can see no good reason why your GP can't refer you again since she is obviously not bothered about a GCA patient. Is she still there? Where are you? Could you afford at least one private appointment?

[prunus in reply to PMRpro]

Originally she was fine. It was this relapse two years ago that prompted me to contact PMRGCA because I was getting frustrated. I'd had an unbelievable headache in the night when the pain was too great even to call for my OH. When the ambulance men came they took me to a hospital that specialises in strokes which is another trust. The Dr there thought it was my GCA back, but no CRP or ESR signs, (this had not entered my head having been in remission for two years) and came as a surprise. He could not refer me back to my rheumy. So I got an appointment in a fortnight at the Dr's. I rang my rheumy's secretary and was told I was queue jumping when my sight was at stake and got nowhere. The Dr's would not honour an old perscription and it was only after I made a scene that I got more predisolone. That was when I contacted PMRGCA and a certain lady that I shall always be indebted to came on the scene and helped me.

[PMRpro Ambassador in reply to prunus]

Did you see the rheumy? Or was it the receptionist/secretary playing god? I would have made a complaint.

[prunus in reply to PMRpro]

A month later, with effort on my part as I was still not feeling great, I wrote (recorded delivery) to my rheumy and did see her eventually. She did not comment on what I had to say other than A and E depts can no longer refer back to Consultants??? I said I could not have coped without the help from PMRGCA. The help I get from all of you keeps me going. I never received a reply to my letter in writing.

[PMRpro Ambassador in reply to prunus]

No - you need something better than that. She's right, hospital consultants have to re-refer via the GP which is stupid and wastes a LOT of time. But ?GCA needs to be seen quickly and so do flares - the patient's sight is at risk. So when the patient requests, at least a phone call should be forthcoming.

[prunus in reply to PMRpro]

It wasn't. I had to wait two weeks to see the Dr and in the meantime treated my self by trial and error once I had got hold of the predisolone.

[Telian in reply to prunus]

You do need to see rheumie though as said below, In the first instance you could request the appointment be brought forward via her secretary - alternatively, as already said, ask your GP to refer you to someone else. Don't wait around too long. You shouldn't be treated like that. Best wishes.

[prunus in reply to Telian]

Thanks for that. Another Dr at the same practice suggested I tried to get a cancellation but after my experience two years ago which was unbelieveable, it has put me off and I have had more help from PMRGCA.(See what I have written to PMRpro

[Telian in reply to prunus]

At least you are on steroids but is it enough to treat the inflammation? If things get really bad don't hesitate in going to A&E, we only have one pair of eyes!

[prunus in reply to Telian]

I could not agree more. Two years ago when I was desperate my son said give them 2hours and if I had heard nothing get a cab to Aand E. Fortunately I got the predisolone.

[Telian in reply to prunus]

You son is looking after you well.

[prunus in reply to Telian]

I have a negative attitude to taking medication but now my eyes have settled again I realise how necessary it was. The problem with GCA is that it is unseen. Like my OH says noone knows your body like yourself. Fortunately for me my elder son has been very involved in my GCA journey. It was providential he was visiting when the rheumy first came to see me in hospital. At that point I was too ill to take in what she was saying. He also downloaded the first I ever read about GCA for me from the computer.

[Hobbitses]

My first sign of GCA was jaw claudication, 10 months after being diagnosed with PMR, when my Pred dose was down to 6. The GP shot me up to 60 immediately, nasty shock but she said we must save your sight. I had a biopsy confirming GCA, but no headaches or visual symptoms. Six months later, Pred now down to 9, one evening I noticed a small dark spot on the upper vision of my right eye and went straight to my local A&E, not realising there was no emergency eye unit there. It was the first day of the junior doctor strike (although that may not have been a factor) - the young man who looked down the machine gave me a tube of cream for a scratch on my cornea. I saw my GP the and the Eye Unit during the next two days but in the end made an appointment with my optician, who showed me a photo of the back of my eye - a haemorrhage in my optic nerve. After that it was St George's, the closest out-of-hours eye emergency (Saturday by now), waited 11 hours. Basically there was nothing other than high doses of pred... I saw a private consultant a few days later, who confirmed I'd had an AION. He was so grave about it I finally understood I would be permanently blind in that eye.

I haven't met or come across others (apart from DorsetLady) who've lost sight through GCA, and would be interested to know of different experiences of sight loss.

[Purple-Owl in reply to Hobbitses]

My mother lost her sight in both eyes with GCA. It was many years ago, about 1989. She said she was reading the paper one morning when the letters started tumbling down the page. She did say later that before that she had had a headache, so that could have been a warning.

[prunus in reply to Purple-Owl]

Your poor mother. I suppose less was known then than now about GCA. Her sight loss

was very quick.

[PMRpro Ambassador in reply to Hobbitses]

You would be better to repost this as a new thread - then more people will see it,

[Hobbitses in reply to PMRpro]

Thanks PMRpro,will do.

[prunus in reply to Hobbitses]

Thanks for replying, but can I ask you what is an AION?

[piglette in reply to prunus]

arteritic anterior ischemic optic neuropathy

[Hobbitses]

As Piglette says...

At the risk of repeating myself immediately, I am going to take PMRpro's advice and repeat myself immediately (!), hoping to hear of others' experiences of sight loss.