My mum lost her vision in her left eye last Saturday and was diagnosed late for GCA by the optician after her GP and A&E department both missed it despite having all the classic symptoms.
She was put on intravenous then a high dose of steroids but then her right eye began to fail 5 days later. She can currently see from only the top half of her eye not the side (I assume the internal damage is flipped) she is back on the intravenous steroids again and very, very scared.
I know that there is nothing we can do to save the lost vision but is there anything we need to be aware of to save what is left?
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Jeromekjerome
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I`m new to GCA so can`t offer any advice, but just wanted to say how sorry I am to hear about your mam. She has been so unlucky. Good luck with finding a solution.
I'm so sorry but they are doing what they can - once vision is gone in one eye there is a 50/50 chance of the other eye going within a couple of weeks, Immediate very high dose pulse therapy with i.v. steroids followed by more high dose oral therapy is about all they can do. Unfortunately once a certain level of oxygen deprivation is reached in more than a certain number of cells the damage to the cells spreads - and in nerves they just don't recover.
How did she present to the GP and A&E? What did they manage to miss?
Thanks for your reply. That confirms what I’ve found out online.
She went to GP months ago with painful tingling scalp, extremely painful headaches jaw and tongue pain, double vision.
They diagnosed neuralgia and gave her ibuprofen which got rid of/masked the pain.
When her left eye felt like a white shade came down she got taken to A&E at Chester where they tested for stroke- when they ruled that out they sent her home.
She went to a small, local optician the next morning- now a white disk appeared in left eye. The young optician suspected temporal arteritis and sent her straight to Warrington A&E and rang them to advice immediate steroids.
The hospital did not have the steroids in stock and she had to wait a further 4 hours.
She still can see the top front half of things with the right eye, it’s been 8 days since diagnosis and treatment started.
Once you have recovered a bit I would be seeking to file a complaint. Because with that set of symptoms it shouldn't have been missed. I find it difficult to believe that there wasn't already some sign of AION (the enlarged pale optic nerve sign the young optician saw) the previous day - did they LOOK at the retina? Not having steroids in stock is utterly disgusting, It would have been faster to grind up a load of oral pred tablets to speed up absorption than wait 4 hours.
It is heartbreaking to hear this - this forum is here because a rheumatologist had a similar experience years ago and started a crusade to ensure it didn't happen again. It is better thanks to his and the charity's efforts. But we are fighting a rearguard action very often - we are mostly just patients but we know we have probably prevented quite a lot of families having the difficult future you are now faced with, How old is your mother?
I really feel for your mum and your family. Once things have settled please get in touch with the rnib. My dad lost most of his site through macula degeneration. The rnib got him talking books, some coloured glasses that helped his problem. They provided little reading tables, book lights and good magnifiers. Good luck 🌻
Hi again just to say how sorry I am for you and your mum I fortunately haven’t lost vision, but gca has gone into majority of large vessels including aorta. Had been to go numerous times over a period of 7 weeks with classic gca symptoms and then a trip to our local spec savers resulted in the optician sending me off to the doctor for urgent bloods , consultant and steroids the following day!! Your mum will need lots of love and rest, probably won’t be sleeping well at night but really important to rest
Ooh, I think that’s complaint time on a number of counts, when you have the energy. For a hospital not to have IV steroids beggars belief. Even oral steroids would have been better than nothing. So sorry, I hope she keeps what she has now.
Very sorry to hear about your mum - sounds very similar to my experience seven years ago - I had hoped that things had moved on since then!
Fortunately I was treated within an hour of reaching A&E after losing right eye, and left eye was saved (but as PMRpro rightly says it can take two weeks to know that for sure). That’s what should have happened to your mum.
What dose is she on now?
Hopefully if things haven’t deteriorated any more then what’s she’s got now will remain. Not what you want to hear probably, but certainly better than it could be.
Do contact RNIB - link below - they will be able help a little - and if she has only limited sight in remaining eye she should be registered as sight impaired and may receive help. They will give advice - please ring them.
You mum will need your support and reassurance - especially through the next few weeks- her life has been turned upside down - and she will have difficulties in coming to terms with that and with the side effects of high doses of Pred.
But life does go on - you might like to read this (for you as much as your mum) - my perspective of life with monocular vision -
As PMRpro says - in the fullness of time you need to think about making a complaint on her behalf - so while things are fresh in the mind make notes of everything that’s gone on, especially when symptoms have been missed.
If you want to PM me anytime please do - just tap on my picture and write message (not shown on open forum).
I have nothing more to offer you in terms of advice as I am not well versed in matters of GCA...i just wanted to reach out to say how very sorry i am for what your mum has gone through.
I cant even begin to imagine the impact the late diagnosis has had on her life and on yours. She is lucky to have a child like you. I hope you remain strong for her sake and obtain the help you need. I sincerely hope you make a formal complaint against such abysmal medical care.
I am truly shocked by your mum's experience not least because it could have been me. My GP didn't have a clue about GCA. When I saw him, he said the headache was caused by bad posture affecting my neck and that I needed to see a physiotherapist. Fortunately for me I also developed PMR the following month and he couldn't dismiss the symptoms in the same way, so I was referred to a rheumatologist before my eyes were affected.
I agree that you should file a complaint both because of the late diagnosis and the fact that the hospital was so badly equipped. These unnecessary mistakes should not still be happening.
So sorry for your mum. A a barrister i can only back up what pmrpro and dorsetlady have said about complaining but do it through your nhs trusts legal dept and not PALS. All my love to you and your mumxx YBB
How devastating for your Mum and you and I like many others here will feel very outraged that she didn't receive the timely responses needed to prevent this outcome. Having no steroids available on hand sounds crazy to me - someone - somewhere- must be responsible for that alone. As for doctors missing even the 'classic' signs and symptoms we hear that still too often here but fortunately not always with such terrible results. I know you must be feeling overwhelmed by everything at present - but yes maybe down the track a serious complaint (or two) could be filed.
All good wishes to you and your Mum - we are all feeling for you both !!
That's really awful, Jerome. It could have happened to me. I had visual auras - amazing light flashes, colour bursts, in and out of black swipes in the right eye. Also, jaw claudication and massive headaches. Misdiagnosed as a TIA and sent home with statins and painkillers. If I hadn't complained the next day and sent immediately to the Diagnostic & Assessment Unit of our hospital, given steroids intravenously - I would have been blind.
I wish you the best of luck with laying a serious complaint; doctors have a duty of care to seek a second opinion.
Give your Mum a hug from me (in New Zealand) and hope her eyesight is not further affected.
I am so sorry to hear of your mother’s vision loss. Sudden visual loss on this scale is devastating and she will be scared and worried about how she will cope. It is so worrying and disappointing to hear that the GP did not refer immediately. Even double vision alone merits referral. I’m hoping that she is now in the care of the ophthalmologists? Both Warrington and Chester have ophthalmic services. The RNIB are useful but there may well be an Eye Clinic Liaison Officer (ECLO) in the hospital. ECLO’s usually have a wealth of knowledge regarding visual loss and help that is available locally and can also help with counselling and support. There may also be a local society for those with visual impairment or a sensory needs team both of whim can provide support and information. Thinking of you and your mum and hoping the residual sight has been saved.
How awful for your Mum must have been a shock. I had PMR first then GCA but thanks to this wonderful forum and thresholds caring members I managed to up my steroids and saved the day although not without some damage. I also have had glaucoma for 8 yrs so have damaged optic nerves. I did look on line and saw some Gene therapy being piloted in Germany unsure of costs procedure etc. I currently see okayish but the future is unsure I have a great consultant I am hoping he can advise me it is outrageous that your Mum has had to endure this terrible experience. Knock on doors and raise Cain if there is any hope at all of getting some sight back for her they must take responsibility. My heart goes out to her all the very best andeals good luck on this journey x
Just to clarify- I wouldn’t want GCA sight loss patients to be lulled into a false state of hope.
Once sight loss has gone through GCA, there is very little hope of it returning. The optic nerve has been starved of blood via the ophthalmic artery - and once that happens there is very little chance of it being resurrected.
Terribly sad news, same problem occurred with my Father when he was 61, all the classic symptoms but missed by A&E and optician. He lost sight in one eye and the other was fine after high dose steroids and IV. He lived with one eye for 23 yrs and adjusted very well.
Good to hear your Father went onto live with his one good eye. Do you know how long he remained on steroids for his remaining 23 years ? Did he ever have flare ups in that time ?
He managed to live many years after that ; his steroid dose dropped to 0mg after 3years and he was fine with one eye.... I say fine he continued driving but started to scrape buses and car transporters and it was "always their fault" 😀
Thank you Cyclo5 for your prompt reply. So good to hear your Dad made a good recovery, and was able to come off steroids in 3 years, and went on to enjoy life with his one good eye. I love the bit about everyone else’s fault when having the odd scrape whilst driving !!!
I am now 5 years still on steroids after a brief loss of sight in one eye. I am about to reduce to two and a half mg. and hopeful I don’t experience any more very scary incidents with the beastly GCA.
I think we spoke on the phone yesterday. Glad you found the HealthUnlocked forum. A goldmine of information and empathy. My best wishes to you and your mum. 🌺
I am just home from visiting her - she lost a bit more vision in the left eye while I was there - right after today's steroid IV had finished - so scary - she also described sparkly light effects earlier. She said the right eye has behaved very differently from when the left eye lost vision.
The consultant who saw her this afternoon told her that there was a possibility that it could spread to the brain - but admitted that he didn't know much about it. He also said he had heard of four women this year who this happened to and wondered if it was a virus.
Is this true? I have not read anything that indicates this, but maybe I've been just remembering the optimistic things. This is scaring her more than the vision now.
I'm glad he admitted he didn't know much and frankly people like him should keep their mouths shut, especially to a patient who has already lost their sight. That is more than enough to be going on with.
When I read experiences like this I feel infuriated - we are not talking about some very very 'rare' disease. Surely when there is this degree of ignorance there should be some comeback or accountability. I shudder to think of all of those people who will lose eyesight in similar circumstances with 'consultants' looking very 'vague' and apparently unable to inform themselves when there are clear gaps in their knowledge. This makes me especially angry when even without any medical or 'scientific' education many people here on HU have managed to inform THEMSELVES well enough to demand appropriate treatment. But the fact is we SHOULD be able to rely on quality professional support when we need it most - isn't that their job !!! ?(sigh).
It is and I couldn't agree more. On a different question - one lady on the forum was admitted to hospital in the middle of the night because of a severe episode of atrial fibrillation. The weekend duty consultant sent her home next morning without even the basic essential of starting anticoagulation therapy. He was a diabetologist. Fair enough, it isn't your personal special field - then ASK, check!! When she told me I sent her to her GP who is outstanding - he was as horrified as me.
I am so sorry. I cannot imagine what it must be like for your mother and I am glad for her sake that she has your support. If you can get in touch with the RNIB you will get invaluable support and advice. Today it feels like the end of the world, but with peer support and companionship she and family will find a way forward, find a new way of being. It takes time, so please reach out and get support from people who really understand as soon as possible.
Something you won’t want to hear, but it’s not atypical - there is a 50/50 chance within the first 2 weeks following loss of first eye for the second to be lost as well. Plus she should have been on a higher dose than 60mg until that time had passed - I was on 80mg, others have been higher.
Please keep in contact - we can still help with the GCA issues, but you do need RNIB and local support for her sight loss.
See my long post just below - they needed to give the very high doses as soon as the vision went in the first eye since they had failed abysmally in preventing it beforehand. Had they started with 60mg when she first had symptoms that might have worked. By the time some vision was gone she needed far more to have a chance of retaining some sight. And then they just weren't aggressive enough.
Did she never see an eye specialist after the first visual loss? They are usually far more proactive than non-specialists and even some rheumatologists.
The only thing I would suggest in addition to pmr pro's advice is writing down everything you remember happening and the sequence. Once you all start to get over the shock you may want to at least make a complaint. The more evidence you can collect the better. 🌻💜
It may have been a factor- but it might not have been - nobody can categorically say that. As I said, there’s a fifty fifty chance - and for your mum obviously she came down on the wrong side - I am so sorry.
But when you feel the time is right, you do need to take this further whether it be through the hospital trust or via a no win, no fee personal medical claim.
It won’t bring your mum’s sight back, but it may provide some provision for her future - and highlight that system is still not working for some GCA patients.
Will PM you in the next day or so - I am a bit busy at moment - my sister died on Monday.
Just to add my weight to DL's post - exactly what I was about to say. My entire family works/ed for the NHS so I don't approve of ambulance chasing insurance claims. But this is different. Money won't bring her sight back - it will help with the cost of extra help.
Thank you. Lived about 60miles away - and 9 years age difference so not as close as some sisters - but we were the only siblings left- so a bit more special.
Trying to help nieces - one has bipolar issues - so not in a good place at the best of times. So trying to be a supportive auntie.
I am SO sorry - I really had hoped what was left was going to stay but it was only ever 50/50.
There is nothing atypical about that GCA presentation Jerome - where there is already visual loss the starting dose is 80mg without even thinking about it and it may require 100mg. Or a 3-day intravenous pulse therapy - up to 1000mg per infusion or more as the dose would be 15mg per kg body weight which is 1000mg for a 70kg patient which isn't particularly big. Ever so slightly more than 60mg ...
There is universal agreement that glucocorticosteroids are the mainstay of treatment for GCA and should be initiated immediately and aggressively, with the goal of suppressing inflammation and preventing visual loss and ischemic stroke. The initial starting dose, route of administration, and duration of therapy are still matters of debate, however, and depend largely on the patient’s potential for visual loss or stroke.
Oral prednisone is first-line acute therapy for GCA. The initial starting dose used to control GCA varies widely in the literature—from 20 mg/d in a mixed population of patients with either GCA or PMR but with strictly constitutional signs and symptoms, to more than 100 mg/d in a high-risk neuro-ophthalmic population with recent or impending visual loss."
and
"IV pulse methylprednisolone has been proposed as an induction therapy, particularly in cases where vision is at risk. Four studies have examined IV steroid therapy in GCA, 2 of which were prospective randomized controlled trials (Table 1). The study by Chevalet and colleagues showed no benefit for a single low induction dose of IV methylprednisolone, 250 mg, in reducing cumulative steroid dose at 1 year; however, the recent study by Mazlumzadeh and coworkers found that a 3-day course of induction IV methylprednisolone at a much higher dose of 15 mg/kg/d (about 1000 mg/d) allowed more rapid weaning from prednisone than placebo, and also reduced the cumulative steroid dose at week 78. Interestingly, the benefits of pulse steroid therapy became obvious later in the course of the disease."
I do hope you are angry enough about this to at least present every doctor involved in this with a copy of that paper I've given you the link for in the hope they will never abandon a patient like your mum again.
All they had to do was google it to be sure.
Big hugs from us to you all, because it is going to be hard for you too xxxx
For this to have happened is truly horrible and I feel for your mother and you - total loss of vision is a massively devastating thing. 'Atypical' - well maybe not given the lack of TIMELY treatment - but at present I'm sure even thinking about dealing with any serious challenges to the medical profession who were involved must be quite overwhelming - so maybe down the track. In the interim I wish all the very best to your mum and hope she now gets some really helpful and appropriate professional support and assistance to negotiate what must feel like a whole new world of obstacles.
I can’t add any more except to say I’m so sorry this has happened. It must be hard to know the next steps to take but advice on this forum will help in difficult times. Hugs.
I went to all my Mum's appointments with her at the hospital - We are discovering this world of darkness together and learning the best ways to navigate the likes of a busy hospital corridor, steps and doorways etc. She is being massively brave (beta-blockers help)
The ophthalmologist and rheumatologist both told me with some vehemence that 60mg was the biggest dose according to guidelines - they were adamant that she had been given enough steroids - I gave them the 20 page print out (that states 80-100mg once vision starts to go) mentioned above ^ with an online link.
The rheumatologist was very thorough and has booked more tests to try and rule out anything else - she is continuing treatment as if it is GCA but exploring other things just in case.
The ophthalmologist at Warrington who I won't name was very defensive and denied the delay of steroids when my mum was first admitted (why would we make that up?) She herself was not there at the time but her trainees were. The way she told my mum that she would never see again was absolutely terrible - we had coped well all day, some humour and other friendly staff had helped but this was handled very badly, considering we already knew this terrible fact - awkward and very negative no future info, no advice, no reassurance of help, she wasn't even going to issue the blind certificate that kick starts the local authorities etc until I told her to.
3 questions if anyone can help
1- My mum's hearing has been much worse than usual - can anybody tell me if this is to do with GCA?
2- The horrible ophthalmologist also mentioned that there could be small vessels deep in her brain that might be damaged too that we don't know about -that might cause a stroke - do the steroids still help to prevent this or is it like a time bomb? Her new ultrasound temple and under arm artery scan, MRI and MRA scans were negative.
3- Her jaw still hurts after about 4 chews on food - is this permanent like the eyes - or can this damage be reversed with the steroids?
1) Yes, hearing problems are part of GCA - involvement of the 8th cranial nerve to be exact - and the NE region part of this charity was involved in funding the pilot work which was the basis for an NHS-funded study:
2) Not sure about that - there is a risk of stroke with GCA but I would have thought it was greater if untreated so provided the GCA is now under control the risk is far less. She should be referred to the stroke clinic I would have thought - they are the experts. But the rheumy is at least continuing with treatment.
3) I would be inclined to wonder if she still needs some more pred but it is also possible something else is causing it. Obviously the rheumy still thinks 60mg is enough... But the ongoing ear and jaw problems suggest it may not be.
I'm speechless. I had heard bad reports of the NW area but nothing to match this.
I am inclined to think that they KNOW they messed up and are being defensive but it is totally unacceptable - as is the appalling level of communication skills exhibited by the ophthalmogist. Funny how "it's guidelines" is always used to fit what they want - claiming they can't do something because of guidelines or not doing something because "guidelines are only guidelines, only advisory".
Will you have to see the eye person again? If so, I would ask for someone with whom you can build a better relationship. I'm so sorry, you both deserve better than this - the NHS is stretched - that is no excuse for not knowing the right way to treat a not uncommon illness.
Put this out as a new post. You’ll get more answer answers then - everybody gets notified of new post, but not necessarily of replies unless they are specifically following post (like me ) or it’s a direct response to their reply .
Just copy your reply above and paste into a new post - head it up something like - Further comment to mums sight loss .
If you have a problem come back to me and I’ll ask one of the moderators to help
Quick answers in meantime -
Hearing loss can be affect by GCA recent study shows - will find it
Other vessels may have been affect, but the Pred should have stopped any further degeneration, so if nothing’s shown to date she should be okay.
The jaw problem should be reversed by the Pred, provided high enough dose, but it can also be caused by other things.
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